How can I stop my aunt from refusing cancer treatment?

46 answers | Last updated: Dec 27, 2017
Lucinda asked...

How can I stop my aunt from refusing cancer treatment? My aunt is 56 and has been diagnosed with inflammatory breast cancer. It hasn't spread outside of the breast. She is wanting to refuse all types of treatment including removal of the infected breast. I believe the reasons include money and fear of the side effect of treatment.Can you give some advice on this issue? What would be the effects of the cancer left untreated? What would it entail for me to take care of her?

Expert Answers

Bonnie Bajorek Daneker is author and creator of the The Compassionate Caregiver's Series, which includes "The Compassionate Caregiver's Guide to Caring for Someone with Cancer," "The Journey of Grief," "Handbook on Hospice and Palliative Care," and other titles on cancer diagnosis and end of life. She speaks regularly at cancer research and support functions, including PANCAN and Cancer Survivor's Network. She is a former member of the Executive Committee of the CSN at St. Joseph's Hospital of Atlanta and the Georgia Chapter of the Lymphoma Research Foundation.

Hi Lucinda,

We need to stop and think about something: This may sound a little like "tough love," but why do you specifically want her to get treatment? It could be because you love her and want to see her healthy, or because you're concerned about the ability to care for her, or many other reasons.

It's important to understand your motives because it may be part of why she is refusing cancer treatment. Many cancer patients feel "out of control" because something is happening to them that they did not want and didn't plan for. They can't control people's reactions (like yours) and they can't control their own future.

What they can control is when they make decisions. Remember, she is "captain of her healthcare ship" until such time she signs Power of Attorney over to you and is deemed unable to make her own decisions. This means that regardless of her reasons - fear, monetary concerns, etc. - you must honor them, no matter how painful they are to you. But I suspect that part of her refusal is your insistence. Could you try another approach with her: give her information she needs about the progression of the disease (, as well as treatment options (from her oncologist) and funding options (on indigent programs from various pharmaceutical companies). Give her time to go through the information and understand the pros and cons about treatment. Offer her others to talk with through the Susan G Komen breast care helpline at 1-877 GO KOMEN (1-877-465-6636). Let her know you love her, you'll help out with whatever she decides, and that she can change her mind if she wants to. Then be there when she needs you.

That said, you'll want to do some preparation on your side. Read whatever you give her. Be prepared to talk about it. IBC has a lower survival rate than other forms of breast cancer, so find out the exact prognosis from her doctor and use the time wisely. If she still refuses treatment, do comforting and happy things together. For example, pull together a care basket of wonderful, soothing things to deal with swelling and discomfort of her breasts, like a soft robe, baby lotion, and bath salts.  Ask her how she feels about soft cup, non-underwire bras that will support her swelling - she may need larger bras and many women find comfort in these. Watch for topical infection, which must be treated immediately.  

She may be dizzy, tired, and irritable as well, so keep your flexibility with her changing moods. Suggest a little exercise (like walking), good nutrition and plenty of fluids.

Internally, she may deal with metastasis, or spread. Because IBC is an advanced form of breast cancer, it could spread quickly. With metastasis, there will be many other symptoms, depending on where and how fast. You probably won't know it has spread until you, she or the doctor notice the symptoms. She should still get regular checkups, even if she does not take curative treatment, to help regulate any pain, nausea or other discomfort she may have.

Lastly, if you are blood-related to your aunt, get yourself checked regularly for good breast health. There is some evidence that IBC is genetically linked and you'll want to be in good health yourself to take care of her.


Community Answers

A fellow caregiver answered...

The answer from the expert is so thorough and understanding - thank you.  Your Aunt needs your love and support now more than she needs anything.  Maybe your fears all come down to one fear - that you fear the death of your Aunt.  Totally understandable.  Please know that your Aunt is aware of the possibility of death and all the other concerns that you have as well. 

As hard as it may be for you to do, she probably just needs you to "sit" with her right now and not do anything other than just be supportive and understanding.  When she is ready to make some decisions regarding the cancer, she will.



Jorcna answered...

I actually applaud your aunt for her decision. As the expert said, she may be feeling out of control because of the diagnosis and your insistence on treatment. My guess is that she may have a change of heart when you back off and let her be alone with her thoughts for a while. Sometimes we, as caring relatives, are so focused on what WE think is the right thing to do that we forget about what the patient actually feels/wants. We also become quite selfish. We don't want to lose our loved one so we try to do anything/everything possible to save them. Please let your aunt have her feelings for a bit. She needs to feel that she IS in control.

Octoman answered...

I have decided this is not very clear. So I have put another answer in another answer.further down. well I refused cancer treatment And I have turned into a weirdo (Yes still valid) Yes just this this morning I saw a old couple struggling with a shopping trolly,before I knew what I was doing I was helping them into their car lifting heavy packages and .listening to the terrible suffering they have been through.and generally being helpful. I am a now a Do gooder! All my own fault. Using spirtuallity to help me fight cancer,caused this. I seem to love everybody.and every thing. I keep looking at the wonders of life all around and ignore the bad stuff. Being on cloud nine I think it's called . I even love my cancer, So beware Taking no treatment has side effects, Love from crazy Ken I forgot to say how wise I thought Bonnie the expert was. Seriously not having treatment is not a option . I refused the medical treatment that was offerred. But I give 101 per cent to fighting my cancer, with my diet exersize , My mind . with Spirituality and my,atitude,I fight cancer but I enjoy doing it. I have nothing to lose but my life.

Turning institute answered...

I wonder what this woman's doctor(s) have said to her, what treatment has been recommended or considered. Maybe a way to help her would be to suggest that she get another opinion or explore more of what is available to help her, whether she gets "treatment" or not. For example there are Gilda's Clubs around the country and other kinds of wellness programs--(Harmony Hill, in Washington State, is one example)... she could get support from others, whether or not she is receiving aggressive treatment, and find out more about how other people with cancer are approaching their care.

Octoman answered...

Having no not sensible. I say I have no medical treatment. But do see my Doctor on a regular basis. I have just come back from my doctors, This morning she examined the lump in my stomach by feeling it.but she wants me to have another get more information. In seven years I have had loads. (See how it grows:)So I declined. I told her it was a waste of time; when I feel the need,I will. She arranged a appointment for a blood count. She explains the pro'and con's of not doing what she wants. A Great Doctor. So when I say I have no treatment. I mean not for cancer which is stomach removal and no options. I have build a gym.I exercise every day, I eat nor drink anything that is bad for me, And everything that is good. My mind is of prime importance. Spiriuality that is dealing with your spirit, and keeping it positive. Am I wasting my time printing this? Negative thought ! ,kick it out. I love you all.Ken

Claudia413 answered...

I find it very sad that someone would choose NOT to fight IBC. In 2007 I was diagnosed with IBC (at age 65), and I went through almost 6 months of chemo, a mastectomy, then 33 radiation treatments. After rads, I started on Arimidex to keep the cancer from recurring. In our support group, we even have a woman who was diagnosed with IBC in 1991 and is still around and has NOT had any recurrence since her initial diagnosis. I would love to talk to this woman, have her join our IBC support group and learn about ways to get the treatment she needs if she has no insurance. Her life is worth it. Age 56 is way to young to just give up because of this diagnosis. My heart goes out to her.

Johnc answered...

I can imagine how consuming your worry about your aunt is. Some years ago my aunt had an operable brain tumor. She found out not long after diagnosis my next door neighbor had a successful operation for the exact same thing. She said she didn't want the operation. It didn't matter who talked to her about it. She even knew my next door neighbor since they were young adults before I was born.

We tried talking to her and asking her objections. All she would say is she didn't want the operation. The doctor was excellent, he was our doctor also. Her kids couldn't understand why she was refusing.

We all gave her a lot of time without bothering her about it. We would get it touch with each other and talk about how and when we thought we should talk to her about it and when we should let her be.

The sad thing about it was she never changed her mind. Her decision to do nothing was fatal. It's been many years and her 2 sons still, to this day, blame the doctor for her death. The doctor wasn't to blame and tried just as hard as the rest of us to get her to change her mind. They won't admit it but I think they still feel guilty of not being able to get her to change her mind. I know the whole ordeal still bothers them.

Everything else in her life was fine. She was living a wonderful life except for the tumor. She seemed a happy person even when she thought no one was watching. No financial worries. Plenty of loving family and extended family. People that would do anything for her.

It didn't make sense then and it doesn't now. The only thing I can think of is she must has been more afraid of the operation than dying from the tumor. She may have thought she was going to die any way. That fighting it and dying was more of a financial burden on the family than just dying. What a loss. We all miss her.

Sometimes people don't change their mind. It may just be to overwhelming for them to deal with so they do nothing. It may be fear of the treatment. Denial. It would be nice if people would say why they refuse so you could address those concerns or at least try. Some people never say why.

I can understand a fear of treatment. I had a different health issue and needed an operation. I even signed myself out of the hospital 3 or 4 times against doctors recommendations. Where they have you sign a paper that says you've been informed of the seriousness of your condition and may die if your leave. I left any way.

I always had an excuse but the real excuse was I was scared. More scared of an operation than of dying. One day I just changed my mind. I really can't even tell you why. I just woke up one day and made some arrangements to have things looked after and went to the emergency room. I didn't even tell my family I was doing it. The next day I had the operation.

That was 2 months ago. I don't have the money to pay for it. But I'm feeling so much better now and I don't care about the bills. It will get worked out somehow. Now that I feel much better and the worst is behind me I have a totally different outlook about it.

Everyone was telling me to just get the operation. I logically knew that's what I should do. It didn't matter. The change of mind and loss of fear came from within or was divine intervention. Not from people feeding me info and trying to convince me. I wish I could tell you there was something you could say that would change your aunts mind. But I don't know myself.

She might be like me and the answer must come from within. I will pray that her answer comes while their is still time for treatment. Blessings to your aunt and her family. Bless you Lucinda and may you all find acceptance, comfort and peace of spirit.

Octoman answered...


Angel of hope answered...

Dear Lucinda,

Your aunt refused medical treatment; but as Ken mentioned to some degree, there are other treatments - spiritual, healthy diet and exercise. Bonnie also gave some wonderful suggestions to help your aunt feel as comfortable and in control of her situation as possible.

I am a Christian naturopathic doctor and psychotherapist and want to suggest that there are numerous natural options as well. Truly, the medical doctors are not God and do not have all the answers. Think about it -- that's why physicians have medical "practices" physician (medical/allopathic or naturopathic) can guarantee a "cure" and "remission" is not the same thing as a "cure". Chemotherapy uses powerful drugs to "kill" the cancer cells, but they also destroy the body's God-given immune system. With or without allopathic medical treatment or complementary/ alternative/ natural treatment, there simply are no guarantees regarding the successful cure of the disease. You and your aunt might consider a far gentler, holistic approach to treatment. You might want to either contact the naturopathic colleges regarding qualififed practitioners in your area, or do an online search and share the information with your aunt as an OPTION for her. There are also some well-respected clinics just outside the U.S. (Oasis Clinic, Dr. Contreras). Let your aunt know that there are options for her if she so choses. Ultimately, the decision needs to be her decision. And a person's own mental outlook on the success of treatment (or not) can greatly affect the treatment outcome. If she has already "given up" in her mind (which, by the way, is different from finding peace and resignment to the will of God).

I lost my 54 yr. old husband on March 14, 2009, to small cell lung cancer which metasticized to his brain, liver, kidneys, stomach and colon. He died just 5 days after his diagnosis. It was a total shock for us because he had never smoked a day in his life and that type of cancer almost always occurs in heavy smokers. Nevertheless, upon diagnosis, we had decided against chemo. The plan was to keep him as comfortable as possible and move him to a hospice, where we had planned to begin some aggressive natural treatments. Unfortunately, the disease progressed with lightening speed and I am grateful that we did not cause him any further suffering from chemo or radiation side effects.

Only God knows your aunt's true prognosis. My experience as a healthcare practitioner, both in private practice and earlier as a nursing assistant on an oncology unit and also working as a Pastoral Care volunteer for over 20 years in a local medical center, has been that very often people just seem to "know" when their time to meet our Maker is near -- even without a medical diagnosis. If this is the case with your aunt, the best things you can do for her and your own peace of mind as well, are to give her the opportunity to retain as much dignity and control as possible through this difficult time, PRAY, and share quality time with her.

One more thing, remember that MIRACLES STILL HAPPEN! And, where there's life, there's HOPE.

God bless you both. I will keep you both in my prayers.

Magintob answered...

The truth is no one knows how they will respond to a situation until they are faced with it - everyone lives in their own shoes.

I have written a Living Will that I expect to be followed explicitly should I be in a situation that I cannot actively make medical decisions for myself. Your aunt is conscious, alive and in sound mind - she can make her decisions for herself. Respect her.

I am 62 and in good health - I choose NOT to have invasive radical medical proceedures for such things as organ failure and cancer. I only want radical medical intervention if my situation is a physical medical emergency (broken bones etc). My reason is that I do not have confidence in the diagnostic process or the marketing and pharmacy-driven prescription process. I have seen so many cases of mis-diagnosis and of guess-work treatment.

For recovery and healing I only want alternative treatments and processes which are gentler to the body without the harmful side effects.

Please let your aunt be - she has her reasons. Support her with love, kindness, compassion - talk with her about her feelings. She may be afraid and in talking to you you may find another solution, another way of treatment that would work FOR HER.

My thoughts are with you both.

Octoman answered...

Angel of god . Your story was so profoud and full of meaning. I am not afraid of surgery I have had so many operation I even agreed to my present cancers removal 7 years ago. I was told just the cancer would be removed, just before I going to be butchered I asked a question. and was told the surgeon was going to remove most of my stomach. I left a trail of dust behind as I departed . Later my surgeon told me I was lucky. as my cancer had spread to my liver and kidneys . I was so pleased, Now I could use god in the way god was intended for us to do . not to cure us. But I do believe gods purpose is to help people to a state where miraclescan occur . Like when the diagnosed cancers in my liver and kidneys became inactive,I did my bit by a complete live style I love every body just the natural consquence of changes made
Sorry if my views differ from yours,but I cannot make sense of a god,who plays a games with peoples lifes.God to me,has no favorites,no special persons. Your faith is stronger than mine.I guess.but one must believe that which that makes most to sense them Ken

Lizzieb answered...

I think all the answers have merit. My first reaction was to say - don't do anything, just listen. She needs to have a sounding board and that way she can come to her own conclusion without feeling pressured. That's what good counselors do, in my experience. Listening to the other without judgment is the best way to help anyone in a life changing situation. But it takes a lot of courage and I hope you will find yours, so your aunt can find peace in whatever she decides.

Octoman answered...

Magintob A very sensible person. in a crazy world. you are a rarity . I have had 7 years with what I call the KeyStone Cops. Silly is putting it mildly; a couple of months ago I discovered a new lump in my stomach.Doctor you must go to hospital as soon as possible. Sorry i have a golf match to play?I say,I get a scan. Oh !dear the cancer has grown you must have chemo to shrink it. first consultation , last week letter the surgeon is now refering to separate growths orignal cancer and a lump he has not a clue what it is,not that he admitted that.he has sent me two appointments both I cancelled. I am about to phone him, I need a fairy tale so you are so right . Ken

Octoman answered...

reading these pages i think should be required reading for doctors all people are not brainwashed. as they seem to think

Johnc answered...

I am a big alternative fan myself. I did surrender and have one operation but I had previously saved my life 3 times with alternatives. So I know if you find the right alternative treatment and follow through with it you can gain your health back.

Many years ago I came across a doctor that was talking about how she was being criticized and ridiculed by fellow surgeons. She was an internationally acclaimed orthopedic trauma surgeon and Chief of Orthopedic Surgery at San Francisco General Hospital. She was using high speed saws and drills. She wore a special suit the filtered exiting air to protect the patient. There were no filters for incoming air to protect her and she had them added to her suit. That's what started it all.

It turns out it was a good move. I believe she did this because she found out that viruses become airborne even in ways not previously considered and can infect doctors. I remember her talking about doctors that burned off venereal warts were getting warts. It turned off that viruses were surviving this process. The live viruses were in the rising smoke and infecting the doctors.

She was using high speed saws and other tools that atomized and vaporized body fluids making them airborne. She was the first person to have these incoming air filters added to her suit. Instead of acknowledging her insight many other surgeons ostracized her.

Later I found out she was going to be on a 4 hour radio show talking about a different topic so I tuned in. It turned out she had advanced breast cancer and cured it. She knew the outcome of medically approved treatment a.k.a chemotherapy and radiation. She knew that true survival rates weren't getting better. Cancer survival was being determined by a five year window. Since cancer was being detected earlier the window was moved away from the time that death started occurring or evidence of cancer returned. Turns out that what was making the survival rate look better was earlier detection not treatment. The U.S. General Accountability Office says the way the survival rate is calculated is misleading.

She rejected standard therapies because of their destructive side effects and because those therapies often lead to death. She decided to use natural inexpensive therapies. If you visit her site make sure you click the link to her pictures showing the huge tumor bulging out of chest. She has some videos there and I bought them but if you search for her on YouTube you can find them there. Just enter dr lorraine day in the search box.

Octoman answered...

johnc yes information is available It is ignored by most people, ignored because it has no profit potental may be. I used sensable methods to cure my other illness. that my brother in law died from .I am sure it was the was he. before it killed him , Any treated recovery. is a great success for the treatment. a death is ignored;unavoidable? I think we are going through the dark ages for medical treatment. so much brainwashing. at eighty this year, even with the cancer side affects I am so much fitter than I have ever been.that means in all my life. no medication no pills I can avoid pain natures way iron tablet for.blood loss but that is all, I did start this as just a johnc well done message; and here I am gas bagging again.sorry. ;

Octoman answered...

Lizzeb. Wise words indeed, So why does stupidity rule? Do intelligent people turn away, Discouraged by the system. Leaving the ignorant,the Freedom to perform,their. stupid acts. What can be done? We seem powerless: Against the powers that be. god lies dormant unused,ignored. or abandoned .

Lizzieb answered...

Without getting into a discussion about religious beliefs, I think people simply don't know how to deal with sickness, hardship and death, when it visits loved ones or close friends. It's not malicious ignorance or some powers that be conspiracy. Often, people don't want to do the wrong thing, so they don't do anything. Each of us can practice what we would like others to do for us and teach by example. That's all.

Octoman answered...

Lizzeb I just say what I think.., what you say also makes sense,to me. I know nothing about other people, my version of god just seems better for me,fits me perfectly,no doubts.just love. At eighty this year and two cancers to deal with.and a badly disabled wife that has angina.diabetes, odema of legs and feet, two replacement knee joints, 3 prolapsed disks in her back.hiatus hernia,all gained while receiving treatment for rheumatoid arthritis, that I refused treatment for twenty.five years ago. Now I can run,dance,jump.and I use a my gym daily.
Where my wife is not able to move unaided. She is a Jehovah Witness, and 9 years younger than me, Strange.Why her,and not me god? She believes in doctors.I dont.a matter of faith?
Yes I am a terrible man. I just try to help people think. Not what I think,just to think for themselves.

Wonder444 answered...

Hello Lucinda,

I have always contended that having this disease was much harder on the loved ones than the pt. Please understand at this point and time your aunt needs your support and understanding 100%. Even if you do not agree with her choices. Fighting the disease is hard enough without having to fight off the disapproval of others. Believe me she is in no way giving up. She may just change her mind on a moments notice. Her type is one of the worst types to have, which I am sure she has been made well aware of by her doctors.

Believe me when I say it was an honor taking care of my mother up to the very end. I also took care of my only brother in his later stages of cancer. I would not have traded this experience for anything. All they wanted was understanding hugs and showing each just how much they are/were loved. They both passed at home in their own rooms. What is so important is the fact that they both died with dignity. (I too have been living with this disease since I was 42 and I am now 63.) Had both breast removed at different times and was not able to have reconstruction because of the extensive surgery on the right side. I did reject all other treatments because it was my choice. (I too had an aggressive form(s) on right side. Left side was removed because of questionalbe test.) In my opinion its not how long I would live but the quality of life I will have while I am living. My body looks like a road map with all the surgeries but I am still here and live on my own. In fact everyone cannot believe I am still around. Just be sure your aunt's doctor(s) will keep her as comfortable as possible. With my brother they were afraid he would become addicted. With my mother, I was able to give her oral morphine. As for myself, I voiced my concern about my pain meds and my doctor told me to take them as instructed and we would worry about the other at the end of the problem I am now having. Besides, one of my first doctors told me I would not become addicted as long as I only took pain meds when I was in pain. The first time I was on heavy pain meds for over seven years. I did not become addicted and they were a God send in easing of the pain.

Now for you. Research at your local library or a medical library for any additional information you may want or need. Go to NCI for good info as well as the cancer soc. There are many cell types of breast cancer, so it is not one size fits all. Be careful where the info is coming from. There is loads of misinformation on the web.

Please know we are all stronger than we ever could image when there is a need. My thoughts are with you both. Lucinda, my son leads several church groups and I will make sure to have your name + aunt on their prayer list.

May God be with you both, stay strong for her and yourself. You may not think so now, but helping her will be a gift. Please take care of yourself for your sake too.

Grinch answered...

I was diagnosed with IBC in 1999, at age 49. I elected to try a 'bone marrow transplant/stem cell rescue/high dose chemo' at City of Hope, Duarte, CA (a group of angels)[controversial treatment at the time, & failed procedure & failed clinical trial]. As I had a history of being very healthy (aside fr Stage 3B IBC, lol) I accepted an offer to enter a clinical trial, which was a second dose of BMT/SCR/HDC. It was grueling; City of Hope was wonderfully supportive and upbeat (3 month inpatient treatment). I am told I am the remaining survivor (for several years) of the clinical trial.

The experience took me to Octoman's level of love and oneness with the universe (I try to sustain that, but I'm a lawyer); it convinced me that, no matter how painful surviving is, we humans naturally mount a tremendous battle to stay alive - it seemed to be an imbred instinct in me (everything went wrong, but my body & mind never stopped fighting for a second).

I have no idea why some people 'survive' (I say tolerate, as no one 'survives' life) cancer. I think part of the answer is attitude - humor, love, acceptance and appreciation of the life we are given, and part seems to come from other people's love and support and, amazing to me at the time - prayers - from all demoninations, all people. For whatever reason, God smiled on me, and I do try to pass on that smile.

To my fellow IBCers and cancer patients: I really felt the effect of 'chemo-brain' (as well as other side effects). I was a practicing attorney in Ca. when I was diagnosed in 1999. I retired (Prosecutor) in 2006, and passed the Texas Bar in 2007 (I say the brain damage from the chemo helped me to pass the Tx Bar). Don't give in to chemo-brain; getting off medications for pain and neuropathy made a huge difference in my ability to focus and think clearly. Don't accept the status quo - it will get better, if you fight it -- you just have to work at focusing and constantly push/test yourself.

The best advice I received during my treatments was: stay away from the emotional vampires in your life. It may be someone you love dearly: a spouse, a parent, a child ... certainly continue to love them, but limit your time with those people who leave you drained of energy. Increase your time with those people who feed you energy - they leave you feeling better about the world and your place in it. Very simple, and good advice.

Lucinda, I think we all have to travel the road of illness alone. We can feed off the support and love from around us, but it is an individual journey. If that were my aunt, I think I would try to talk to her about her illness, her feelings about it, her desires (bucket list?), and whether she wants/needs help in anything. Maybe she just needs someone else to take her to appointments & she would have treatments; maybe she is at peace with her decision not to have treatment.

I think the important thing is to be at peace with your situation, and your decision as to the options you've chosen. I would just try to let her talk, if she wishes, and listen for any request/desire she may have, and being selfish, I'd want to reassure myself that it was a decision not to have treatment, and not a situation where someone is frozen in place out of fear of making the wrong decision as to how to proceed (do they need more info, or maybe they have had sufficient & do not want any interference in their choice).

I would just try to understand my aunt, keep an ear out for any request on her part, and continue to love and spend time with her. Good luck, and God Bless.

Siva answered...

Hi Lucinda,

Your aunt is right in refusing treatment as she thinks that it may be mutilating.

The patient has all freedom to decide whether to take treatment or not. When the patient has decided not to take any treatment, we shouldn't always conclude that he/she is ignorant of the benefits of treatment and is dooming his or her life by denying treatment.

I'm a medical doctor working in a health care center in the Middle East. We don't have adequate treatment facilities for cancer in our set up. Once we detect cancer in a patient, we refer the patient to an oncology center in India.

My opinion is that many patients are right in decision making with regard to their treatment. I've come across very bitter experiences with the treatment offered by some specialists, especially the medical oncologists.

To quote a few examples:

I referred six young patients with Non-Hodgekin's lymphoma. For reasons known only to the oncologists, all were administered the very expensive Mono-Clonal Antibodies (Mapthera)after assuring promising results. Excepting one lady, all died within six months of treatment. Not only that, all of them developed severe bone marrow depression and succumbed to bleeding episodes, stroke and infections.

Another young male with Acute Lymphoblastic Leukemia was also administered Mapthera after the conventional chemotherapy did not benefit the patient.He went into shock after which he was revived with difficulty. In about a week's time, he developed severe myelo-suppression because of which he was discontinued treatment, given transfusions and asked to return home. When the patient was returning to his home town by plane, he developed severe epistaxis. After landing, he was rushed to a nearby hospital, after reaching which he developed a stroke. After an agonizing week, in the hospital in a comatose condition, he died. His family members still keep blaming me, for sending him for the treatment which in their opinion (and in my opinion too) has fastened his death.She feels that he would have been alive today, though sick, if only he were not given the treatment at all!

I am sure that all these patients could have lived more if they were not given these treatments.

One of my Romanian friends daughter developed histiocytosis (a 'near' cancerous blood disorder)with several osteolytic skull and bone lesions when she was three years old. He took her taken to top hematologists and oncologists in the Europe who all opined that no treatment would save her and she would only live for three months. When my anguished friend went to a Church to pray, the priest (who was also good in Naturopathy) came to his rescue and offered to treat the girl with healing diet, fruits, vegetables and herbs. They stayed at the church for three months and took treatment. Whether it was a miracle or mercy of God no one knows, she's been completely cured from her illness. After six months, my friend took her to the the team of doctors who finalized the date of his daughter's death. They all become annoyed with my friend that he is fooling them by showing another healthy girl. They flung the x-rays on my friend's face. They refused to believe that the girl is alive and kicking, completely recovered from her illness! (May be she would have died if they had treated her!) She's now twenty seven, in a good job in Ploieşti, working as an executive in a foreign firm and happily married. Today she's pregnant and she is the most beautiful pregnant women I've ever seen!

Three years ago when my father-in-law developed a prostate cancer and Acute Myeloid Leukemia together, the oncologists in a leading medical institution in Mumbai opined that he would live for only two months and advised chemotherapy in addition to orchidectomy. After discussing the pros and cons of chemo, my wife decided to give him only naturotherapy. We treated him with plenty of green vegetable juices, wheat grass juice, fruit juices, broccoli, cauliflower, sunflower seeds, red grape seed oil, plentyful of Vitamin C and Selenium. He lived for 14 months without any set backs in his health, happily attending to his office and driving his car!

Every one of us should read the book 'AntiCancer-A New Way of Life' written by David Servan-Schreiber, MD, PhD, and professor of psychiatry at the University of Pittsburgh School of Medicine. At the age of 31, Servan-Schreiber, one of the founders of Doctors Without Borders, had a malignant brain tumor surgically removed. After exploring the research on the connections between diet and cancer, Serban-Schreiber embarked on a series of lifestyle changes that he credits with preventing his brain cancer from recurring.

Two books by nutritional biochemist Richard Beliveau,'Foods to Fight Cancer'& 'Foods That Fight Cancer and Cooking with Foods That Fight Cancer', provide specific lists of foods and cooking suggestions that make following an anti-cancer diet straightforward and simple.

I always discuss with my cancer patients the merits of naturopathy, good life style and exercises along with positive thoughts, good deeds and prayers the merits and demerits of chemotherapy and leave them to choose. To my elderly patients, I always recommend naturopathy rather than chemotherapy which will make them bed ridden, drain their energy and hope, and drive them to their grave fast!

Jade1961 answered...

Hi Lucinda, My name is Jade & I am a two time cancer survivor. The first time required medical intervention as it was my ovaries and uterus that had the cancer. So at age 29 I experienced a complete hysterectomy. This meant that for the rest of my life I would be on hormone replacement therapy & I would never bear another child. I was devastated and opted out of any "prophylactic" chemo or radiation. Three years later I was diagnosed with Multiple Myeloma and given 18 months to live ... I had a 60% chance of chemo killing me so I went to God. I prayed and handed the cancer to Him to cure. He did just that, I have been in remission coming up on my 11th year in July of 2011. I have become very proactive, I am a leader of a LIVESTRONG Army, part of the Lance Armstrong Foundation. The Manifesto of the Foundation can answer your question much better than I can with the exception that you have to remember it is Her life and She WILL Have it HER Way!

"The Manifesto of the Lance Armstrong Foundation

We believe in life. Your life. We believe in living every minute of it with every ounce of your being. And that you must not let cancer take control of it. We believe in energy: channeled and fierce. We believe in focus: getting smart and living strong. Unity is strength. Knowledge is power. Attitude is everything. This is the Lance Armstrong Foundation.

We kick in the moment you're diagnosed. We help you accept the tears. Acknowledge the rage. We believe in your right to live without pain. We believe in information. Not pity. And in straight, open talk about cancer. With husbands, wives and partners. With kids, friends and neighbors. And the people you live with, work with, cry and laugh with. This is no time to pull punches. You're in the fight of your life. We're about the hard stuff. Like finding the nerve to ask for a second opinion. And a third, or a fourth, if that's what it takes. We're about getting smart about clinical trials. And if it comes to it, being in control of how your life ends. It's your life. You will have it your way.

We're about the practical stuff. Planning for surviving. Banking your sperm. Preserving your fertility. Organizing your finances. Dealing with hospitals, specialists, insurance companies and employers. It's knowing your rights. It's your life. Take no prisoners.

We're about the fight. We're your champion on Capitol Hill. Your advocate with the healthcare system. Your sponsor in the research labs. And we know the fight never ends. Cancer may leave your body, but it never leaves your life. This is the Lance Armstrong Foundation. Founded and inspired by one of the toughest cancer survivors on the planet. LIVESTRONGâ„¢"

Please Lucinda go to and utilize our services. If you want to reach me feel free to go to my army page Erie County Cancer Killers and I will do anything I can to help you find an Army in your area.

I know this is difficult for you. I lost my Great Aunt, she kind of stood in as my Baba when my Baba passed away, to colon cancer. I was by her side until she fell asleep in the lord. At home, with hospice comfortable in her own bed. Did I want her to go through treatment? Of course, I didn't want to lose someone I love to such an insidious killer. But I did and I grieved, got angry then got help and found closure.

It is not our place to demand someone we love do something medically that they are opposed to. This is her journey, unfortunately you are along for the ride, make your time with her count. Let her get 2 or 3 or 4 opinions if that's what it takes. But, most of all get her support through one of our armies ~ yourself too. You need the support just as much as she does.

I hope that I have helped you in some small way.

I will keep you & your aunt in my prayers and pray that God grants you understanding and your loved one survival.

Be at peace and rest with God he WILL carry you hon. I know he has carried me through many things for a lot of years.

Junemamadukes answered...

i had breast cancer in 1998. had cancer removed not breast. had 6 chemo and 33 radition. i still have side effects from the chemo. i live in pain even though i am on several pain meds. i'm glad i went through all that cause if i didn't i would have missed out on seeing my 3 grandchildren born since the treatment. even in the pain i'm blessed to have a great loving family. if she takes the treatment well i'll tell you about me. a little after the second chemo i felt tingling in my scalp . i had my husband take me for a hair cut. i had a buzz cut. i am glad i did cause next morning all the little nups was on my pillow. if i didn't cut it i would have freaked if it was long strands. i smoked pot during chemo and i didn't get sick to my stomach. i was the only one in my group who didn't get sick. i said we are being injected with poison with cross bones on it do you really think i'm gonna be afaid of a plant that is nature.if the cancer ever came back i wouldn't have treatment my body couldn't take that again.i'm a christain and i know where i'm going when i cross over thanks to GOD who sent HIS SON JESUS to take my sins. there is a huge difference in how people react when told they have cancer. the ones who are christians didn't have the same fear about it.

Bob0link answered...

Your aunt should try alternative treatments. I went through chemo and radiation, still the surgeon wanted to operate on my colon cancer. I said no and started looking into alternative treatments. Five months later the cancer was gone. Since your aunt refuses conventional medicine she could benefit from alternative medicine, at least she has a chance to live. Of course prayer is a very important part of any cancer treatment.

Rosana answered...

Hi, my name is Rosie now I am 60, I was diagnosed with breast cancer stage IIIA in 2008 and I also refused treatment I guess for the same things as your aunt is refusing treatment, money, no insurance and being extremely scared of the chemotherapy and surgery and so many other things, thank God I started my treatment in 2010, I was able to celebrate my 60 birthday and now Christmas and in January I will have to received my last chemotherapy, I didn't have insurance so it was less expensive for me to travel to South America and received the treatment and believe me I am so tired but I only have one more chemotherapy to do, I know how your aunt feels, she is the only one that is able to make the decision, I know it is so hard to do but believe me only prayers and believing in God and with Faith she will make the right decision, don't pressure her, she will do the right decision, you only need to pray and have FAITH, God works wonders, and I consider myself a miracle, I believe in miracles. God bless you and your aunt because I know how hard it is this whole process.

A fellow caregiver answered...

My 32 yr old daughter was told she had stage 3 breast cancer in may 2010, I could'nt imagine her ever refuseing treatment,or why she would ever want to, insured or not. There is help out there,she was not insured either, we applyed for the breast cancer program through medicaid and she's being treated in one of the best places in our state.Theres no excuse to refuse to be treated,why would you do that to your self and your family? The aunt needs to wake up and look at what she's doing to her self and her family!! Should'nt she be more scared of what will happen if she has no treatment at all? cancer treatment is not a fun thing,but no treatment at all is worse!!!

Bob0link answered...

Who can blame someone with cancer from refusing treatments, when you see what others have gone through by receiving traditional treatments. I also refused traditional surgery and turned to alternative treatments, I am now cancer free and without the pain and suffering that traditional treatments cause. If anyone with cancer wants to know how cancer can be defeated I will respond to their emails but I am not a doctor or even qualified to advise them, all I can do is refer them to information that is considered alternative care. My heart goes out to all cancer patients, I have been there and understand their feelings. All hope is not lost for your aunt, all she needs is to find out how to defeat cancer with mostly diet.

Bob0link answered...

I am always concerned when I hear about how terrible cancer can be but I found the silver lining and will be glad to share a treatment I used to cure my cancer using a flush and a very strict diet. But no surgery.

Ibc survivor answered...

I am an Inflammatory Breast Cancer, Stage IV survivor. I was diagnosed in January of 2010. After being diagnosed locally, I also got a second opinion from Duke Medical Center. I strongly advise your aunt to be sure she has the opinion of a breast cancer expert who has EXPERIENCE with Inflammatory Breast Cancer(IBC). It is a rare, but highly aggressive type of breast cancer that effects about 2-4% of all breast cancers.

Please tell your aunt to IGNORE the statistics on IBC she will see on line. Anyone in the IBC community will tell you those stats are outdated as new treatments have emerged in the past few years which have had much more promising results but have not been reflected yet in the officially reported results which were analyzed years ago.

I had the cancer in one breast, positive lymph node in Both axillary areas (in my armpit area), thus I was considered Stage IV.

After only 3 and a half months of chemo ( Never once was I nauseated. I had side effects, none of which were intolerable. I still have some "chemo brain" and neuropathy effects.), I was classified as No Evidence of Disease (NED). NED means they are unable to detect any signs of the cancer remaining altho there May be microscopic cancer cells remaining that are yet unable to be detected. Thus, you continue to do every thing that you can to keep that NED status.

Which, with IBC, means that you have a mastectomy performed on the effected breast FOLLOWING, NOT BEFORE, CHEMO and then typically 6 weeks of radiation (which I drove myself to everyday and able to take care of myself fully). Some women then continue on some type of chemo after the radiation but I did not.

I did retire after a 30 yr career in medical social work, but I continue to live a very full life and expect to live many more years to come.

IBC is NOT a death sentence by any stretch of the imagination. Only if you Think that it is. I don't know any IBC survivors (and I know many, in person and online), who has ever expressed that they wish they had not followed through with treatment. Quite the opposite.

I have a new life which is extraordinarily better and more enriched by the simple joys of life around me, richer relationships than ever before and a new gratitude for all the blessings I have received. I Thought I had a good life before, but now I have a new mission to fulfill. That includes raising awareness and hope for IBC. ALL women (and men) reading this response, Pleeease read about IBC online after you finish this letter. We owe it to ourselves. Knowledge is Power.

I also fully respect your aunt's right to make her own decision. I would only urge her to be sure she is making a properly INFORMED decision. With IBC, time is of the essence. Meaning she must decide Now as it is a very aggressive disease. And one cannot delay getting started on the chemo more than a couple of weeks or so at the most.

There are programs in essentially every state that assist someone needed breast cancer treatment. She (or someone on her behalf) should contact the social worker at the hospital and ask how to be referred to such programs AND/OR contact someone at her local Dept of Social Services or Dept of Health and Human Services. Also call the American Cancer Society and ask to talk with an Oncology Social Worker.

Please tell your aunt that she can apply for Social Security Disability through her local Soc Security office or have them do a phone appointment with her. IBC is generally always approved the first time and the decision of eligibility should be made within 30 days. I submitted medical records I had along with my application and received approval in a record 13 days! I will be eligible for Medicare in July 2012.

However, if your aunt has limited funds, she could qualify for what is called Supplemental Security Income (SSI). They will make that decision as well through the application process at the Social Security Administration office. This is important---IF SHE IS ELIGIBLE FOR SSI, SHE SHOULD GET MEDICAL COVERAGE UNDER MEDICAID THAT CAN BE RETROACTIVE (GO BACK) FOR 3 MONTHS FROM WHEN SHE SET UP HER APPOINTMENT.

I wish you and your aunt all the best. You can take a look at and see how many of us are living with No Evidence of Disease. Life is very worth living with IBC. She is ALREADY a SURVIVOR. God bless.

Sorry to be such a long letter. But I hope this response can be helpful.

Octoman answered...

Well I am eighty one now,I just celebrated my 50th wedding anniversary; I have been told I have a hernia,in my groin and it must be operated on,it will never recover it was done by lifting my doctor said,I disagreed; I changed from Y-fronts to boxer shorts ,(No support?) So I have changed back again,and find I am having no trouble now, I did see a surgeon; Who said,"I was right,it did not have to be caused by lifting",he also said it is my attitude that saved me from dying from cancer ,he wish more of his patient were like me,I said"You would be out of a job if they were"He laughed and agreed; he was lovely man, Chemo the great destroyer has been found is more effective in small doses,its side affect do not cause such great damage, actually causing bone cancer,in some cases,I read; I wonder how many people died to prove this?yes I know I am wicked ;but that is me old big mouth;I really love people,tears flood from my eyes,I am not crying,I just empathize;

Ab337 answered...

You need to back off. It is HER decision. "I believe the reasons include money and fear of the side effect of treatment.Can you give some advice on this issue? What would be the effects of the cancer left untreated? What would it entail for me to take care of her?" You have no way of knowing - unless you asked, and it sounds like you didn't - what she thinks or feels or is afraid of. Do you know that the "bill of patients' rights" allows her to REFUSE any treatment and any doctor and any medication? Are you a doctor? Still, back off. BTW, it sounds like your are worried about your responsibilities more taht anything else. Best of luck to both of you. Lots of hugs, too.

A fellow caregiver answered...

I am sorry to hear about your aunt, my partner was diagnosed with IBC but her cancer has spread to her lymph nodes but i have good news. She is refusing western medicine but has is using natural remedies and it seems to have been work better then Chemo. She eating right, working out, doing two foot detoxs a week and going to her local tanning salon where she tans and also uses RED LIGHT THERAPY. She went from a stage 4 to a stage 3b in one breast and 3C in the other. But the best part is it has not speard. If your aunt doesnt want to use chemo then dont force her but there are other options available to her. GOOD LUCK Angela

Sarahjune answered...

Hi Lucinda (and others), First off, I am so sorry to hear about your aunt. I was in a similar situation with my father many years ago.

I am a student at Columbia University's Graduate School of Journalism, and I'm trying to write a story about cancer patients who are refusing treatment or choosing alternative treatments, and whose family members are trying to be supportive despite being frustrated. Your story, Lucinda, sounds like what I'm looking for. I want to write about this dynamic. If you (or anyone else who reads this) would be willing to speak with me about your experience, please let me know (responding to this is fine).

Thanks so much, and best wishes to you all. Sarah

Octoman answered...

Sarah I am your man;All singing all dancing ,9 years of cancer' liver and kidney plus stomach;cancer no treatment given,and .still a liven; Sense of humor needed for a cancer that is continually bleeding All the rest got fed up with waiting ;and according to a PET scan stopped blood taking ; one big lump in my stomach is presumed my cancer spread but after two years. I am not dead; I have a friend with leukemia ,is being fed with chemo on a daily basis ,now chemo can kill you even if the cancer does not ;it can make you wish you were dead too,not great stuff ; doctors will treat you with it they have got they have no choice. I just hope my friend can survive the chemo,;I have not told her of my beliefs ;just that I have survived without treatment ,a big feat; But no Doctor would recommend it ,because it is more than their job is worth;Amen, you cannot prove I would have died with treatment But the prediction was not good ;;12% chance of five years life?? with just the one cancer not many;

I help her mind,as much as I can because.I find what you think mans you well or feel well

Caring community answered...

Hi everyone, In an effort to stay focused on the original question, any interests for 'sarahjune's' request should be sent to her through a private message via hug/prayer. To send a hug/prayer, simply click "Send Hug/Prayer" underneath a member's avatar.

In the same fashion, please remain focused on the original question or need of the caregiver who started the discussion. Presenting your suggestions and why they may be the best option(s), including your first-hand experiences, could be the most helpful input for that caregiver.

Thank you for your cooperation and support to fellow caregivers of our community. Please don't hesitate to be in touch with our team if you have any concerns or need help finding caregiving resources.

Kind regards from the Community Team

I said no answered...

Breast Cancer 12 years ago taught me a lot about the differences in the Doctors who are the "experts" The first Oncologist I went to insisted on Mastectomy, Chemo and Radiation. I could not agree to all of this. I studied my type of Cancer, and set up a second opinion in another city at a University Cancer Center. The difference in the attitude, and information I received were like night and day. I was given much more information on MY Cancer, from the same tests and information that the first Dr had. The second team of Cancer staff helped me to understand my cancer , my different options for ME. They told me my chances if I did not do the Chemo and Radation. They gave me all the "What Ifs" that I could now deal with. For Me.. I decided to do the Mastectamy, but no Chemo and no radation. For me and my cancer this was right .. I knew if it came back, how it would show itself and what we could do at that time. I urge you to help you Aunt find a second opinion, away from your home area. The difference was so dramatic in the understanding and care that I did not mind driving the 5 hours for checkups every 6 months for 10 years. Best of all, I felt great about MY decision. Second Opinion. Try it! It may even help you to understand your Aunts view point.

Ptowps answered...

My husband died of pancreatic cancer 7 weeks after diagnoses. He was my life. Our two children are grown and married. My job was outsourced to India after a very good career of 25 years. Even the dog died. I am a (I have been told) a very attractive woman of 55, smart, active, educated and usually pretty darn funny. Men think I am invisible. I have never wanted to be alone. I was a good wife, I honored my vows until death did we part. I would never want to go through what he went through alone and I know that nobody would be there for me like I was for him. I would refuse treatment.

Bat things are legal answered...

She is being very smart. cannabis cures cancer, baking soda cures cancer, dca, ahcc, rife machine. this things work. google: known cancer cures and you will see that there are several cures for cancer that the big pharma cant use to make money. chemo and radiation causes more cancer. diet is very important, cancer is a fungus some say. research waht cancer is and you will see that its really simple. no sugar, sugar feeds cancer, but cancer is stupid the think that vitamin c is sugar but its poison to them.

Cindy rose answered...

I currently have advanced IDC and have refused all chemo and radiation. I did agree to have my right breast, as well as axillary tumors and cancerous nodes, removed but I will never agree to anything more with the exception of pain control. I've had bone cancer and had my leg amputated at 15(I'm 41 now) so I've had my fill of chemo and treatments. It makes me very angry when anyone has the nerve to second guess anyone's decision not to treat. How dare you! People have their own reasons for what they will and will not agree to go through, and if you think for one minute that people who refuse treatments don't already have a detailed picture of their death in their mind your sadly mistaken. When she wants your opinion, she'll ask for it. Until then...But out! Sometimes the most selfish thing a family member can do is to worry too much about what they're going through and forgetting about the patient. I started keeping a blog/journal to try to get more people to understand people like me. I do wish you and your Aunt peace with her decisions. Cindy Cindy'

A fellow caregiver answered...

I am fighting leukemia. I have not accepted any treatments. I was told in 2007 that I had 6 months to a year to live. We are now in 2012 and I am still here. I used to own a monument company and we did headstones. Over the years I heard so many stories about the people who lost their lives to chemo. The doctors have admitted to me that the chemo won't cure me, they can only hope it will prolong my life.I have researched the effects of chemo and they are not good. If you survive, you will live with side effects and you will end up with leukemia at some point because of the chemo. I have a positive attitude and I keep myself busy. I focus on the Lord, He is my comfort through this storm and I am always looking to help others. I am not in denial about what I am going through, it is what it is, and ultimately it's my choice and no one else. I could choose to do chemo and suffer for approximately 3 months like I have seen so many others do and then die as they have or I can continue with diet change, keep my hope in the Lord and continue to be able to function. People can't even tell when they look at me that there is anything wrong. The doctors are amazed and can't understand how I am doing so well and look so good. They tell me I am in stage 4, last year I was told again if I didn't do chemo I would die in less than a year. I am thinking of going to see that doctor to show him I am still here and it has been 1 year and 2 weeks since he told me that.People have to decide for themselves what is best for them. I have a daughter that called me selfish for not taking chemo, how do you think she would feel if I took it because that is what she wants and then I suffered and died. She would live with that. I made my decision and I am sticking with it.This is my life and I am fighting with everything I have, I will not poison my body.

Pepita estercita answered...

In 2001, I feel a lump in my breast, after a needle aspiration they told me I had a lump and I can get rid whenever, no rush; I was worry I went to a second opinion, I told the surgeon please took a lump out; after they removed they call me home, you have to come back for a lumpectomy because of CISTOSARCOMA PHILLOYDE, a very rare cancer, they treat me with pills for 5 years, TAMOXIFENO, this pills are suppose to stop the recurrence. In 2012, a different kind of cancer show in my right breast, CARCINOMA IN SITU, in the stage 0, in the left breast they said I had calcifications that they could converted in cancer. Dr. tell me you have 2 options, another lumpectomy and radiation or mastectomy. I told the doctor I came back in a week for the answer . I went home and read about it. I was scare.... I pray for clear my mind and do whatever is the best. When I came back to the doctor I told him I would go for the mastectomy and reconstruccion. In 10/22/12 I have the surgery and now in June they will complete my reconstruction. Oncologist told me I am 99.99% cancer free. I did not have any radiation or chemo. I was bless to decide this option. It was a little painful but I am in the process of recuperation. I am 69 years old in June will be 70 years old , and I feel the Lord is given me a new opportunity of life. I wish your aunt who is only 56 years old , read this message and my advise for her is not to be afraid. I am also single. I want to tell her that for me, the best option is to be treated on time , in the early stages. It is very important to find a good surgeon, a good oncologist, a good doctor to replace your breast, the best option is a simple mastectomy and reconstruction. My best wishes for your aunt and tell her , "do not be afraid" God is with her!.

A fellow caregiver answered...

I apparently have lung cancer, and had been treated for prostate cancer 12 years ago with IMRT (Intensity Modulated Radiation Therapy). The side effects were minimal, but knowing what I have since learned, I would not have done any standard treatment.. I think the PET scan and CT scans with contrast (injection of radioactive Technetium) that I got when they were exploring for the prostate cancer might have caused the lung cancer, but no one can say. The nurse who set me up for the PET scan said I was hot and had to leave the room. After the PET scan, I went to work and held a Geiger counter, which went off the scale..

I have read many times of chemo killing off the cancer, then 5 to 10 years later, after the doctors have gotten their credit for that, killing off the patient with more serious, untreatable cancer. There are alternative treatments available that are very promising and mostly inexpensive with little to no side effects:

DCA (sodium dichloroacetate, used in Canada)

AHCC (Active Hexose Correlated Compound, from specially processed, Japanese medicinal mushrooms)

Cannabis (heated THC seems to be the best)

Falcarinol (from juice of 5 pounds of carrots per day)

Hypertherapy (a machine that carefully raises the blood temperature to high fever levels for 15 minutes at a time, used mostly in Germany, and is the only one that is not cheap and not DIY)

You might research these and tell your aunt about them. For myself, I am starting the AHCC and DCA for a few months and refusing standard treatment. Then we'll see what happens.

Then there is the whole issue of possibly dying soon. I have had several out of body experiences, and know that death is not to be afraid of. I highly recommend meditation, since that (specifically TM) is what started these experiences. Other people don't need that type of confirmation, and are still ready go when it is time. Maybe your aunt also knows not to fear death.

Acml answered...

I want to know how to contact or communicate more directly with Mr. Octoman, as I am very interested in his experience and perspective, and completely support it. I have a rare gorm of leukemia, or an "overlap" myeloproliferative/myelodysplastic disorder (MDS/MPN) called "atypical chronic myeloid leukemia" (aCML), which "looks like" CML, but is "Philadelphia negative" (does not have "Philadelphia" chromosome, and so cannot be treated with breakthrough drug "Gleevec" [imatinib], which gives patients back normal life expectancy). This is more a type of MDS. Anyway, I was diagnosed in August 2016, have so far luckily been pretty stable and able to "watch and wait", but am now edge of being mived to "light chemo" of hypomethylating agents azacitidine (Vidaza) or decitabine (Dacogen), prior to a probable stem cell transplant, none of which I want at all!! I absolutely agree with and side with what I think Octoman is saying - that I don't want any of this, and am not persuaded that any of it is necessarily better or more certain as a reliably effective treatment than doing nothing,mat least fot as long as one can, and maybe even al the way to death. I have seen and read of countless patients being treated with chemo and the result seems to me almost universally to be an experience from the chemo that is pretty miserable snd results in their dying anyway, being killed by or having their death hastened along by the chemo as much as by the disease. I have personally had a cousin and a sister both treated by Dana Farber (near me) eho have had rough chemo experiences and just died anyway - seemingly hastened along by the chemo. I had an aunt who refused most all treatment, except surgery of a small part of her lung, for lung and related cancer, and went on for quite a while, fairly comfortably, and longer than the standard chemo progression, until she finally died fsirly gradually. ACML

Acml answered...

I will further say that I am not stupid or irrational about this. I am an Ivy League grad from UPenn, top U.S. prepschool prior, graduate degree with honors in library science, and almost 40 years experience in library research in major law firms, banks, medicine, and general research. I do not have expertise in this (though constant rigorous medical lit research), but I sm balanced and rational, and though I do have a leaning towards trusting nature and my body's healing/coping ability, and a leaning towards naturopathy (though a clear eyed awareness that many/most of these practitioners are nuts, pseudoscience [at best], even frauds and scams), and a strong skepticism of both the true success rate snd results of standard medicine and also "alternative" medicine; I am strongly science oriented and try to evaluate things rationally and with fact basis. It is clear that the science for standard medicine is more solid and fact based, demonstrable, etc., as far as it goes, than any other source of knowledge about cancer - but it is also inadequate, dtill bumbling around with only a partial (a very tiny partial) picture and understanding of cell biology, how cancer works, how the body wotks, and trying this drug and that drug and adding in various combinations in various "clinical trials" (read: using patients largely as guinea pigs). Whereas, though nontreatment will probably mean patient death, and maybe a more horrible one (though I'm not sure about this...body often declines gradually, and palliative drugs can often make the process fairly tolerable); the body does iften seem to have a way of going on in its own way for a fairly long time - as Mr. Octogen's experience, my aunt's, and others seem to indicate - and it is not at all necessarily true that the alternative to chemo/radiation/standard medical treatment is an immediate horrible death, I don't think, as the medical establishment would have you believe. Quite the opposite posdibly - many people who "just say no" to conventional medical treatment seem to do fairly well, or okay, and in fsct maybe better than the chemo patients. My wife, who is a medical professional in private practice (not doctor) has had breast cancer patients who have survived without full medical treatment. Newsweek had good snd persuasive article a few years ago,nwith picture of patient on cover, on operating table witj surgeons with scalples hovering over him. Eith caption "just say no" - which argued that except for urgent, emergency repair situations, patients might live much longer and do better if they avoided medical treatment for msny chronic problems. ACML