How long can my Mom live with stage 4 metastatic bladder cancer?
My mom has stage 4 metastatic bladder cancer. She had surgery 23 months ago to remove her bladder/complete hysterectomy. Last January she was given a year to live when the doctors found the cancer had spread to her lymph nodes in her left groin area and chest. Everything had been fine until last October when she had back problems, then we found out the cancer had spread to lymph nodes in the back. At this time she went on hospice, at the suggestion of her oncologist. Everything was fine until the first of June this year when she began having swelling in her left leg. It was finally diagnosed as lymphedema. Now she has lymphedema in both legs. Hospice didn't feel it would be beneficial to do lymphedema therapy due to her active cancer. A lymphedema specialist I have talked to is also uncertain it would be beneficial and may cause additional problems. When the lymphedema started we also started having problems with her urostemy bag. The feeling of the ostemy nurse I have talked with feels this is most likely due to the extra protein in her body with the lymphedema and that she is in bed much more now. My biggest questions are how can I expect the lymphedema to progress? What is the best thing to do for lymphedema (it is pitting edema to almost the knees)? What is the best thing to do for an ostemy bag that doesn't adhere because the adhesive is being deteriorated by the protein in the urine other than change it daily? And my biggest question is how long can someone be expected to live with stage 4 metastatic bladder cancer?
It is clear that you are facing a difficult and complex situation. In our 8 step method for family caregiving the first step is understanding the doctors' treatment plans. It will be helpful to ask your Mom's treating physicians the exact questions you post. They will tell you what they think is the best treatment for her cancer and lymphedema.
it is very hard to predict how long she will live. I suggest talking with all the health counselors you can find. That includes her doctors, nurses and anyone from hospice who is trained to help you with the emotional and spiritual questions around dying. Most of all, your support for your Mom and the good times spent together will create strong positive memories. Try and see how valuable your support is and take care of your self .
It is obvious how very much you love your Mom - I am sure she is very grateful to have you for a daughter. I personally do not think there is enough attention paid to bladder cancer in the world. The cigarette packages don't make reference to it, and there is hardly ever any fund raising events for it, and at funerals it seems no one ever requests contributions to bladder cancer research specifically. As we all go along concerning ourselves with pap smears, breast exams, lung cancer, colonoscopies, and heart disease, then "POW" bladder cancer hits out of the blue! And the treatment is life changing, traumatic, and dramatic - a person's whole bladder is removed along with nearby organs such as the uterus, and the bowels cut also to use in the surgery - all this, and as immediately as the surgery can be scheduled. The symptom of blood in the urine as a sign - red/pink urine should be attended to as soon as possible. The knowledge of the importance of this symptom is not well enough known. I went 2 years after this symptom because a lab tech at my clinic told me that was a common symptom in women so I didn't need to see a doctor about it. Then 2 years later I was diagnosed with bladder cancer and had the surgery your Mom had right away. Then my husband was diagnosed 3 years later also with bladder cancer - we got him in for the surgery right away because we knew the symptoms this time. We were told there is no good chemo yet for this type of cancer. He had chemo anyways, but maybe because he was older in age than myself, the cancer spread and he passed away last year from it. The hospital kept looking at his kidneys for a month (even with an MRI) and didn't see cancer so he was encouraged to "stay off the Vicodin" for his back pain - he wanted to go home. At home for one day, now with bed sores from the hospital, I could not get him out of the bathtub! I could not leave him alone to go to work, and he could not get out of the chair alone - so I brought him to a nursing home. The next morning he had a low sugar crisis at the nursing home and was taken to the emergency room. There they did a Cat Scan and informed us his liver and lungs were FULL of cancer that had spread from the original bladder cancer. He died a week later - thankfully he was now able to receive pain medication. All he wanted to do was to go home but he never got a chance. I am telling you all this because I want you to know that medical personnel cannot predict how long a person will live. I was shocked at the aggressiveness of this cancer. I thought my husband would be around longer - I even worked the day he died and was planning to bring him home on hospice the next day. In hind sight even though he didn't complain and was surprised he was terminal I should have noticed his present symptoms - it happened over time little be little so I didn't see the dramatic amount of change in him over the previous year. Like your Mom he had back pain and leg pain. He died on Monday but the weekend before he had an energy surge and was able to talk to all his siblings and children in person or by phone. He was in much pain but I brought him outside anyways in a wheelchair after much help from the wonderful nursing home personnel. He was ornery from pain, and wanted to escape to home. He did not want to eat or drink. It hurt him to bath him. He tried but could not squiggle out of bed even though he had managed to fall out of bed at the hospital. The last night before he died he had hallucinations in his dreams. He wanted to see pictures of the family. He did not talk about dying. Because he didn't say much I did not either - I realize now he wasn't able to talk - I could not read what was going on in his mind. I should have spent time talking to him had I been aware of this. I should have made others leave the room and spent time alone with him talking about our 26 years of marriage together, etc. I had no idea we had so little time left together.
I am telling you all this because I don't think you will get the answer from your Mom or anyone else as to how much time you and she have together. If she is already on hospice I feel you should take the initiative and tell her everything you feel about her as if she will be gone tomorrow. If she is with you another year or two it will not hurt to do this now as she is most aware at this time. Take off work, spend alone time with her, make sure she receives pain medication, and if she gets cranky at times don't take it personally, and take advantage of the breaks provided by the hospice team, etc. We have a daughter too and she had to stay and take finals at college and would be home in 3 more days, but her Dad could not stay with us any longer - that is how fast this cancer works, even though he tried so hard to hang on until she got home. Many parents do not want their children to worry about them or suffer their pain so your Mom may not let you know how bad she's feeling. I only hope if my bladder cancer spreads that I can be as strong as my husband was and not whine. He sat in bed with a little smile on his face to be social, not talking up until the end. It is good that you are trying to make her more comfortable about the lymphedema because it shows her how much you care. My husband and I were both in denial and its in this area I hope you can get through so you don't lose any of the precious time you have left with your Mom. I pray that God gives you the strength to help both of you during this difficult time. Tell her you love her, and give freely of kisses and hugs...... Kindest regards, Kay
Hi. It iss so obvious that you truly care for your mother. I cared for my grandmother for 15 months (she had pancreatic cancer). She didn't want to go to the hospital or have hospice so my mom and I cared for her round the clock and she passed away on 9/25/03 in our home. Last year, my mom was diagnosed with breast cancer. She had a right breast mastectomy this year. Last year she began having problems with lymphedema in her right arm (due to having lymph nodes removed). She is now in physical therapy three times weekly and has to wear a sleeve to help the edema move back into her system. My advice...address the lymphedema!! It can be very uncomfortable. At this point in your mom's care, comfort is key. Some may tell you that it is not important or the "least" important issue but I disagree. I think her comfort is key!!!
Hospice can refer you to person's experienced in relieving the discomfort of lymphedema. My thoughts and prayers are with you and your family. Please know that I will be praying for you all.
I am so sorry to hear of all that you are going through with your mother. I have lived through it- so I know it is a very difficult time. I just wanted to add to the comments already made. I lost my mother this past January to colon cancer. She was diagnosed in 2001 and fought for 8 years! In the end it had spread to her brain. I understand your question about how long can someone live because we asked it over and over again. Doctors really couldn't tell us how long she had to live. They were very vague and said it differs case by case-but they said it would maybe be 6 months. Which was SO frustrating because we just wanted to prepare ourselves for the worse. They discovered the legions on her brain in October 2008, she went into hospice in early January 2009 after having a seizure and she was gone by January 14th. But in the end the person that was able to give us the answer to that question was not my mother's doctors-but my mom herself. All the signs were there. She kept saying she felt so close to God- like He was in the room with her. She kept seeing relatives who had passed on. She kept asking to see family members. She was tired and she knew she was ready to go, but she wanted to spare us the pain. And we wanted to have hope. But ultimately we stopped asking the doctors and just asked her the tough question-'Do you feel like it's your time?' And her answer was-she was tired and she was ready. I was 9 months pregnant and I know that she would NEVER have let go if she didn't have to. I know she wanted to be here to see her grandaughter, but she couldn't hold on. I think giving her the peace in knowing that we were going to be okay if she did decide to let go-helped her to pass on. I told her I know she was in pain and I know she was tired and if she wanted to let go she could- that we'd be okay. She passed on the 14th and my baby was born 2 weeks later. So I say this to say to you dear heart-ask her the tough question. And even if she can't give you an answer-love her like she won't be here tomorrow. Hug her, kiss her, smell her (I miss my mom's scent), tell her you love her and tell her all you need to tell her, ask her questions-if she's able to talk, make her comfortable (do the crazy things she may ask of you-and don't take any yelling personally) make sure you have all her things in order and pray without ceasing for the strength to endure God's will. Whatever that will be. And like the other responder said- if she is here a year or two from now-then WONDERFUL. But if she's not, you will have no regrets and you will have the peace of these memories to last you. Eight months later-knowing I did all of those things helps ease the pain of missing her. I pray your mother survives, that you have the strength & support you need and that you all are granted peace beyond your own understanding. You are in my prayers.
I'm very sorry your Mother is having such a hard time. My experience with this is that my 28 year old son passed away this year after battling a very nasty soft tissue sarcoma. However one of his symptoms were his legs swelling from all the excess fluid in his body. What we found that helped tremendously was the compression stockings. They come in knee high and thigh high lengths and they gave him a lot of relief. They are available in any of the pharmacys and also Wal Mart has them. My son suffered from this for about 4 months before he passed away. I miss him every day. I hope this helps. Christine
Bless you all. I am so sorry. Yesterday I lit a candle for my Brother John. By you sharing your experience about your mom - I have been helped. Thank You! You see my Brother John is five years older than me. I came from a caring family of five. Dad, Mom, Brother Harry and Brother John. John and I are the last two living. We both have Bladder Cancer. I was diagonosed 11 years ago with Stage 1 Bladder Cancer - my brother was diagonosed 2 years ago with Stage 4 Bladder Cancer. I am so sad for my brother and his family. Like your mom, John's bladder cancer had metasosized and he had to have many organs taken out. Now he has been going through chemo since April '09 because the cancer had spread to his lymph nodes. Cancer is terrible. I am so sad. I'm sad but happy to know that others are sharing their experiences...which does help me to face reality. We all know that it's easier to white wash what's really happening. To face what's really happening is difficult. I could go on and on. Like I have always preached to others. "WHEN THERE IS NO ONE ON EARTH THAT CAN HELP YOU TURN TO YOUR HIGHER POWER....For me that is God.
I pray for a miracle everyday. My husband was diagnosed with stage 4 bladder cancer recently and the very sad part is that he told his doctor he had blood in his urine a year before and all they did was take a urine test. Did not send him to a urologist, did not do a cystoscopy. It could have saved his life so please if your doctor does not do more test and continue to monitor it please go to another doctor. Now after a year later he is stage 4 when it could have been caught so much earlier. I want everyone to know that all of us only has today. You can be perfectly healthy and something happens and you are gone. We can not live every day like we are dying or none of us would go to work for sure but we can live every day as good as we can. Let the people you love know it, do something special for someone you care about. Do your job well, say a prayer, whatever makes your life a little better. Stop and look at the sunset or some outher beauty that surrounds you. No one even if you are healthy knows when they will die.
Hi Kaytee, Your story is very touching. It'll be an eye opener to many who may not understand that they should spend quality time with their terminally ill relatives and express their love to the sick by talking to them about how they all love the sick relative. Many of us don't realize that people who have advanced cancer will not be able to talk because of their physical problems in addition to depression due to their disease and incapacity. Even if they are drowsy due to medication or if they are semiconscious, they can hear us well. Three years ago, when my father in law had Acute Myeloid Leukemia and was admitted in a hospital in the last days, my brother in laws, myself and my wife nursed him well and were with him one by one on turn, but never bothered to talk to him, as he was sick and was not able to talk. We also made a big mistake of not telling him about his disease. It was the doctor in a nearby hospital where he was admitted who finally told him about his disease, but in a crude way. At that time, my Father in law was not able to talk well. I and my wife feel every day for the big mistake of not telling him the diagnosis. May be if we'd told him soon after he was diagnosed with leukemia, he would have planned his life in a better way, talked to us a lot when he was physically stronger! No use repenting. He's gone! Our sincere prayers for you, Kaytee.
-Dr.Siva & Gita from Yemen
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My mother was diagnosed with stage 4 bladder cancer that had spread to liver,lungs, & spleen. She too was having UTI's and a CT scan was done we were told it was normal. So 3 months later she ends up in the ER due to stomach pains and all these tumors showed up on the CT scan. A shock. After 4 months of chemo, it now has spread to her bone which required radiation. Plan is to try a different chemo drug & see if it works. Looking at her for being in her 80's you would never know, doesn't even look sick. With cancer through out her body & her feeling & looking great now I'm wondering if we should pursue a second opinion. Any ideas of facilities that specialize in bladder cancer?
I have no idea of any of the answers to your question... but my heart and prayers go out to you and everyone in your family. This cancer is the most devastating illness. My mother has breast cancer and probebly, like you, and as hard it is for us... our mothers pain is the hardest thing to deal with. I wish your mom peace and strength.
Friends I've been reading up on cancer cures. Found this web site go to CANCER FIGHTING STRATEGIES.com Please read it all. Don't now I'm not a expert. but its worth a try. Please go to that web site.
As a 49 yr old man I was diagnosed with stage iv bladder and prostate cancer. They gave me 3 to 6 at the most. It scared the crap out of me. I had all the surgury done. complete removal of bladder and prostate. made me a new bladder out of small bowel and reconnected everything so i could urinate the same. surgery went perfect. Chemo was a must used taxol and gemzar at the same time it got ugly fast but it was the trick the one thing that you mentioned was time. everyday is one more day i didn't have positive thoughts and making your mind up that you can beat it is the key. sitting down with a family member and talking about it helps it lets you know how things really are. My wife was my strength she had lost her father during this and she was a mess I came out of the hospital and told her i was not going anywhere; so don't be afraid. I'll be 53 this dec. cancer free and work everyday doctors in nashville say I shouldn't be here and i tell them no place better than today to be right here talking to you. I hope the best for you and yours remember positve thoughts and lean on someone when you need to if only for a moment it will help you along the way. Bless you and yours. Ken
There are 14 cures for Cancer. Nobody need die from it, even when in the last stages. This applies to many other diseases that Allopathic Medicine cannot help with. firstname.lastname@example.org
I will pray for your mom. My dad was just diagnosed with bladder cancer a month ago.He also has a sarcoma in his hip, it has metastasized to his lungs.He is 65 has never been sick and all of this at once.I live in tn, but came back to florida to help him get through the appts and upcoming chemo treatments. Cancer is a horrible disease and has taken many members of my family. However I do believe that you also have to fight it!! My father is doing just that and I will help him to get through this.I'm hoping that he will come back to tn , and get treated there so he can be with his grandchildren, and want to make sure that we go with the right treatments so that he can continue with a good quality of life. Do whatever you need to do for your mom as I will continue to do for my dad and tell her you love her everyday. And Pray!
In July 2010 I was diagnosed with stage 4 bladder cancer that metastatsized to my brain. They found the brain tumor first. The neurosurgeon said right away that the tumor came from somewhere else. She was right it came from my bladder. The neurosurgeon removed the brain tumor and had that followed up by cyberknife radiation ( 2 treatments of 1 hour each.) Then I saw a urologist who removed 95 % of the tumor in my bladder. Then I had chemo therapy ( 9 treatments of cisplatin)) and radiation to my bladder (36 treatments. I needed to take 2 weeks off due to an infection that needed to be treated with gentimicin. I finished the treatments on January 12 2011 and in May 2011 I had another petscan. Ihad no evidence of any cancer anywhere and was told I was in remission.!!!! I do however have side effects from the treatments neuropathy in my feet and some problems with the bowels. Now I am starting to have dizzyspells and walk sometimes like a drunk ( without having had any alcohol bummer!!!!)Every day I could feel the chemo raging thru my body and also thru my ears and mentioned that to my oncologist. Now I am being referred to an ENT but I cannot be seen untill february of next year. So I have to wait almost 4 month to be seen for a problem that is known to be a side effect of the cisplatin and also of the gentimicin . So basically a double whammy. It really is sad that I have to wait this long because it causes some stress. I am wondering if there are any other people with bladder cancer who have had cisplatin and now experience earproblems. Would love to hear from you I jst heard that the singer Andy Williams was diagnosed with bladder cancer. My prayers will be with all of you!!!!
Having experienced the end stages of bladder cancer (father-in-law) and the end stage of lymphodema. I agree with those who say talk with her NOW. Share your love, your memories and all the comfort you have to offer. Don't forget to take care of yourself. By the time my grandmother's (1977) & father's (2006) lymphodema (both complications of CAD) advanced to above the hips we only had a week left with them. My father-in-law was actually told he had beaten bladder cancer mid-March 2006. Sudden abdominal swelling contined for about two months & exploratory surgery discover a thin tumor lining his abdominal wall (the weeping fluid caused the swelling) and metastasized to his right hip. He passed in 3 days.
My mother was diagnosed with bladder cancer in December 2011 ,I was deverstated we talked and laughed and cried together while I looked after her I loved our time together ,she died on may 4th this year as I sat by her side I will always miss her terribly but loved our time together so just enjoy your time left together
My husband, Phil, who will be 70 this June, was diagnosed with stage 4 bladder cancer 13 months ago. He had the surgery and the chemo. Said they got it all. 9 scans we have had in the past year. Blood test, you name it , they done it. Still no sign. Last week we found out the cancer is in his spine and ribs, they found this with an MRI. They suspect it is in his liver and stomach as well do to other symptoms. I don't understand how not 3 months ago, everything was "clear". And now this. I believe, the treatment they give for the "main" cancer, causes more cancer. All I know at this point is the Doctors are really just guessing. No REAL improvement on treating cancer since 1971. All the time, money, and research, and we don't have anything better today than we had in the 70's. I often wonder if there is a cure for all cancers but the Pharm. companies would loose to much money if they let it out. So in the end, the best advise I can give anyone going through this is, don't take one single minute for granted. You can never say "I Iove you" too much. And always pray. There is nothing too great for GOD !
I have always known that olive leaf extract works wonders with all cancers. Prayers to you and your family.
What I praying about is that God gives me an answer on whether or not I should have my bladder remove because of stage 4 cancer, which has not spread, thus far, to any part of my already, 70 year old, sick body. I met with a team of doctors a week ago at MGH in Boston and I trust them that when they say that surgery to remove it is best. However, before surgery I must go through many body testes to see if my body will be able to go through such a major surgery. My prays to Christ is should I have the surgery or just let it be? I'm not afraid of death, for as Saint Paul said, "I've run a good race and my Faith tells me that Jesus is at the finish line; yet I do not want to suffer through Chemo . . . and die anyway. I do not want to live just for the sake of still being around causing myself and family grief I have a few weeks to make up my mind, for that's how long it will take the doctors to find out whether or not my body can take surgery. Plus, they want me to talk to a 9 member medical team.
Do the surgery. If you have skilled surgeons, all should go well. There is an adjustment, but it gets pretty easy and routine after a while. If the cancer is contained, you could live for some time, possibly many years. If you die in surgery, it is a kinder death than cancer affords.
Go for surgery. My dad didn't. Now it's too late.
Supplement her with curcumin. Curcumin, a compound found in turmeric, is the most evidence based cancer fighting substance known to man. Earlier this year my father was diagonised with stage 4 bladder cancer with mets to his bones. He was in pain an could hardly walk properly. After hearing about curcumin, we began supplementing him wit it in capsule form along with his regular medical treatment. And now after about 5 months he is cancer free and back to his normal self. Please read about curcumin and the scientific evidence backing it. It's a sure-fire cure. The medical industry will hide this from you, else their billion dollar cancer industry will crash.
My mum too was diagnosed with stage 3 bladder and kidney cancer, she could not have surgery because she had a weak heart, which we didn't know until she developed chest pain, whilst on a monitor she had to use a bed pan that's when we discovered blood in her urine. Cytology and ct scan shown the cancer, she had 10days radiotherapy, she was first diagnosed in Oct 2013 then radiotherapy was Jan 2014 we went to see the urology consultant in April and he gave her a prognosis of 8-12months as the cancer was at stage 4, sadly I lost my most beautiful caring positive mum in Oct, st Anne's hospice were a god send, they helped her put things into place, she went to day therapy once a week, they did reflexology, aromatherapy head massage, they talked to her, she made lots of craft stuff and made a memory box for us, she also wrote us all letters, it's heartbreaking and I find it hard to believe I've lost my best friend but I also thank people for being honest enough for her to not only come to terms with her illness but to also be able to put things in order in her mind, she was so organised and such an inspiration to us all...!!! Chris
I don't know if you know anything about alkaline and acidic but acidity is the reason it keeps growing and spreading and whys she is not able to get rid of it and why she never will unless she alkalines here body. 100% of all cancer patients are acidic you can go to pinkblueprint.com and read the nobel prive Dr. report on this and more proof and how to counter act it.
It's been 12 years for me but I was first diagnosed with Metastatic Bladder Cancer. I smoked briefly as a kid but never after that. A co worker smoked both cigarettes and cigars during the day. My local hospital gave me less than a year to live and no treatment recommended. But we decided to go to DFCI in Boston where I was given not much of a chance but agreed to move forward with treatment.
At that point the cancer was in both lungs, liver, spine and sacrum. Treatment was brutal with M-VAC chemotherapy. Initially the cancer was found in bladder and ureter. The plugged ureter caused my left kidney to die so it was removed.
It's been almost 10 years cancer free thanks to the care of DFCI with my loving wife's support who carried me around for around 8 months during and after chemo. No matter how much I walk or exercise my energy level has never come back but at least I wake up every day and appreciate life in general.
My grand mother is affected with ironmaster bladder cancer . She is 85 years old
Doctors debuted for diagnosis because of her age.
Right now her bladder is swelling and two legs are swelling now one more hand is also.
I don't want her to struggle a lot.
Can anyone say what are the difficulties she is gonna face further and also any gone made temporary treatment available to balance it.
Hi this q. Is to matt m: Wich chemo you were given at DFCI boston? My dad has iv bladder :(
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