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Bladder cancer metastasis to lung

edrac
Posts: 4
Joined: Dec 2009

Am new to the site. In August 2008 I had my right kidney and ureter removed because of cancer. In Sept 2009 I had my bladder, prostate and left ureter removed and wear an urostomy bag. I am 67 and was in excellent health till 2008. I went to my oncologist and he said my last ct scan showed a nodule on my lung that was growing. I am scheduled for chemo (pemetrexed) for the next 3 months. I don't know the prognosis, so I am very apprehensive. Has anyone else experienced similar situations?

pkaz53
Posts: 84
Joined: Nov 2005

I haven't posted on this site, I am usually on the lung cancer site, but I saw this post.

I had a 23cm tumor removed from my bladder in 2001,what suprised me and my Urologist was that it was low level, I was able to keep my bladder and started doing several cycles of BCG and Mitomycin did several biopsies some small polyps removed but everything was ok.

Fast forward to spring of 2003 I was scheduled to do a biopsy of the bladder at a local hospital 6 months had lapsed since my last chest x-ray and a new one was ordered the results of that x-ray revealed that I had a shadow on my right lung. I did two bronchoscops with tissue samples removed,Cat Scans and MRI's. I was diagnosed with small cell lung cancer and started chemo (cisplatin and etoposide)in combination with radiation to my chest and then PCI to the brain.

My Urologist told me that the bladder cancer that i had was non-invasive and shouldn't have went to the lung my Onocologist seemed to agree.

By the good graces of God,my Doctors,Family and many prayers I'm still here.

I still get scoped every 3 months and do cat scans upper and lower twice a year-- lots of side effects but the options are unacceptable.

I am 56 years old ....

My thoughts are with you I wish you the best---Paul.

edrac
Posts: 4
Joined: Dec 2009

Thank you so much for your words of encouragement. I have excellent news to report. I went to the doctor yesterday and he said the ct scan showed no cancer on the lung or any other organ. There were small nodules on the lung but they were stable and so he wasn't concerned about them. I will finish the last cycle of chemo on April 14 and then it will be a ct scan 3 months after that to insure the cancer has not reoccured. Anyway thank you it was a help just to read your story.

pkaz53
Posts: 84
Joined: Nov 2005

I'm so happy for you, this made my day, keep up the good fight don't ever give up stay on top of this ---You're a Survivor ----Be Well....

edrac
Posts: 4
Joined: Dec 2009

After my last post, I went for another CT scan my oncologist said it showed more nodules on the lung. He said they were small, but they had multiplied so all indications are it is cancer. He didn't schedule any chemo as yet, and said they were too small to biopsy. Of course this was not news I wanted to hear, eventually I expect to have more chemo. Everything I read does not offer much hope for living beyond 5 years and probably less. I am trying to keep a positive attitude and hopefully the nodules won't grow and they can be controlled with chemo. Has anybody else had experience similar to this? Any encouragement would be appreciated.

pkaz53
Posts: 84
Joined: Nov 2005

What type of treatment is your Doctor suggesting-- is it radiation, chemo or a combination of both.

BobbinJim
Posts: 3
Joined: Oct 2010

Hi, My husband was diagnosed with bladder cancer in April and on June 2, 2010 had his bladder removed; ct scan showed no spread. The preliminary results after surgery showed no lymph node involvement so we thought it had not spread, later results showed some cells outside the bladder. He did 3 rounds of chemo, cisplatin and gemzar. Started running a fever and they did chest x-ray for pneumonia and found nodules on his lung. Today we got the results of the biopsy and it shows that it is bladder cancer that has metastasized. Our Oncologist did not seem to have much hope that there is any cure. He is talking about only hope of slowing growth is going back to old chemo because he did not have it in his lungs before the surgery and the nodules are growing while he is getting the aggressive chemo treatment. How are you doing? What chemo are you taking, I'm grasping for some hope...Bobbi

pkaz53
Posts: 84
Joined: Nov 2005

Hi Bobbi, I'm doing ok I am out of treatment for quite some time. I was diagnosed with small cell lung cancer and did 4 rounds of cisplatin and etoposide in combination with radiation twice a day to my chest for 30 treatments, when that was completed I did pci to the brain.
I did no clinical study and did nothing different, other than the standard treatment for both the bladder cancer and lung cancer.

All my hopes and prayers are with you, Paul..

BobbinJim
Posts: 3
Joined: Oct 2010

Hi Paul, thank you for your answer. I am so glad you are doing so well. Right now we are so frustrated. My husband has had an infection at least once a month since having his bladder removed. He had his surgery 4 months ago and still has stints in place with a urostomy bag. He has been doing chemo, the cancer is now metatasizing and he has not been able to get new chemo because he is so sick from infections. He is currently getting IV antibiotics for 2 weeks. Has anybody else had this problem while on chemo?

lulacou2
Posts: 1
Joined: Feb 2011

Hi my brother in law had Kidney cancer 20 years ago and last year developed bladder cancer, and they removed his bladder and prostate, and has a urostomy bag. He also had infection and bacteria in his urine, come to find out the meds were making him sick and he didn't have infection. They had to go to an infection Speacilest and he explained that his urine would alway show bacteria or infection because he didn't have any more filtering system and the urine coming out the tube would alway show contamanation. They took him off meds and he starting eating and gaining weight the meds was not what he needed. I myself don't have cancer but you may check into this. My sister was whit's end trying to figure it out, the suergon said his job was compleded and what he done was working, the internest and oncologist were lost finally she found the right Dr. and he explained things to them and gave them peace of mind. He started getting better the very next few days, Good luck and hope your is solved soon.

nhabib
Posts: 1
Joined: Mar 2011

Hello, my father was diagnosed w/ Metastatic Bladder Cancer (stage 4) last year around this time. At first they told us he had nonivasive bladder cancer and they did a few BCG treatments. They a few weeks afterwards, he began to cough up blood. Now almost a year later, despite multiple rounds of chemo (which made him very ill) we have decided to stop chemo. He continues to urinate blood and cough up blood and it seems like alot the last month. He is continuing to lose weight and the our oncologist is just saying focal radiation is the only option left but this is only to help stop the bleeding. They tell us his disease is very agressive and very advanced. We are very scared and I'm looking to do more research and become more involved w/ support groups. I'm sorry for all the negative/depressing news but its a reality I have to live with everyday. It has been an emotional roller coaster. I hope and pray your husband is in better health and treatments are going well.
God Bless

dalehagen
Posts: 1
Joined: Sep 2011

My husband and I are going thru a similar challenge. He was diagnosed 4 years ago. He had a redical cystectomy. Went thru chemo and had a few good months..Althought my time line may be a little off. Then last Dec. was diagnosed with a mets to the lungs...Again went thru chemo, Ct & PET scans indicated that the tumors were, not only still there but growing. He was then put on a targeted therapy called sutent. Recent scans show no improvement. His cough is really debilatating and I am beginging to melt down.. Very tearful and so scarred about our future. This is so hard. Just joined this site to talk to others about coping skills and so on... He has a large tumor near the hylum of the lungs and it is to dangerous to try radiation..I think he is now in a 15% of people who survive this long. I feel so lucky to have everyday with him..

Fran Chandler's picture
Fran Chandler
Posts: 29
Joined: Feb 2010

Hi Paul
I was reading your comments and I had my right kidney,tube,cusp of bladder and lymph nodes taken out Feb of this year. Thought I would be getting a clean bill of health but on June 30 of this year I was told I had Bladder cancer. Last week I had my first BCG treatment and will have another one tomorrow. Do they get harder to take each time? I have 5 more to go counting tomorrow.I am so sorry to hear about your lung problem now. I guess we never know what life has in store for us.Take care and I pray that all will get better for you. Fran

pkaz53
Posts: 84
Joined: Nov 2005

Hi Fran,
My, oh my you've had a rough year don't get discouraged, treatments are never easy,I wish I could tell you they are a piece of cake but I would be lying. You already had your first treatment so you know what to expect there was more and more of a burning sensation as I went further along in my treatments I did around 50treatments of BCG and maybe 10 0f Mitomycin and I always dreaded getting the cath inserted into and out of me--You may get nauseated and you will definitely be fatigued.

I wish you the best of luck on your treatments, I will light a candle for you tonight and keep you in my prayers. Paul....

Fran Chandler's picture
Fran Chandler
Posts: 29
Joined: Feb 2010

Hi Paul,
Thank you for your answer to me. I had the 2nd treatment yesterday and yoy are right about ths burninng and fatigue. We came home and I slept all day except for having to go to the bathroom. I sometimes wonder where all th fluid comes from when you are hardly drinking anything.

Thanks for keeping me in your prayers and I will do the same for you. Fran

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

Fran:

I replied to you on another thread. You may have missed it.

For me, the treatments were the same. Yes, I had one treatment weekly for six weeks. Psychologically, the first one was the worst. It was a fear of the unknown, and add to it some horror stories I read on the Internet -- people having bad reactions. I guess I would describe each treatment as "uncomfortable" but not painful. The worst part was the insertion of the catheter. The actual insertion of the BCG into my bladder was painless. I experienced slight discomfort when the catheter was removed, but the discomfort was tolerable because I knew the procedure was over. The hour and day afterward (the rotisserie turns you have to do, bleaching the toilet, etc.) was just a hassle, but no big deal. I did not suffer any after effects of any treatment or the treatments as a whole. Because you're having BCG treatments, I would imagine your cancer is superficial and hasn't invaded the surrounding tissues. If this is the case, you're "lucky" and have a great chance to subdue this monster. Fight like hell Fran!

About your July 30th post: I didn't experience fatigue, burning, or excess peeing. I'm not sure if you're experiencing burning in the bladder or the urethra, but one bit of advice I've given a lot of people (men), if you go in for a cystoscopy, get a prescription beforehand for Phenazopyridine (200 mg) and take one ASAP after your procedure. Otherwise, you'll feel like you're peeing razor blades with a hot sauce chaser. I refer to this as "the orange pill" and I take these about two or three days after the procedure. The pill is orange and will make you pee orange. Ask your doctor if this would help with the burning. Any men that read this post -- if your doctor performs a cystoscopy without prescribing this medication, he/she is INHUMANE!

As a side bar, I don't know how I did it, but four days after my last BCG treatment, my wife and I hopped on our motorcycles and rode them all the way to Alaska and back. The doctor couldn't believe it.

Fran Chandler's picture
Fran Chandler
Posts: 29
Joined: Feb 2010

Hi There,
Am so glad you and your wife made that incrediable motorcycle trip. it will be something you will remember forever. So glad you are doing so well. I was wondering what you meant about the rotisseire turns you mentioned. They give me the treatment and tell me to just lay down in the bed.
so I sit in the bed and crochet afgans or baby blankets to pass the two hours. Does turning help? I was just wondering! I have one advange then you being female, but bladder cancer don't care which you are. I was even reading about pets getting bladder cancer. Cancer is just one sneaky thing to pop up to throw a monkey wrench in life. I thank God there are good people out ther will be there to give you support and advice.
Thanks for your prayers and you and your wife have mine.
Fran

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

After the catheter was removed, I was told to retain the BCG "treatment" in my bladder for an hour (i.e., don't pee). The doctor said to lie on my back for 15 minutes, do a quarter turn and lay on my left side for 15 minutes, my stomach for 15 minutes, and right side for 15 minutes. I was then to void, put a cup of bleach in the toilet for an hour before flushing, and continue the bleach in the toilet thing for 24 hours. The husband of a wife I work with had BCG treatments (different doctor) and was told the same thing. I also used the Internet to research the experiences of others and found that this seemed to be routine. I guess the rotisserie turn ensures that all parts of the bladder are "coated". I don't want to question your doctor, but I wonder if the two hours of BCG (rather than one) is causing some of your irritation? I had two tumors and the BCG during April/May, 2007. I'm on a yearly rotation of cystoscopies now (next one in December), but so far, everything's been fine.

Fran Chandler's picture
Fran Chandler
Posts: 29
Joined: Feb 2010

When they did the cysto they found I had developed cancer tumors since the right kidney had been removed in February. The doctory went in on June 30 and removed about 30 tumors. He said they were non invasive to the mussel walls so that is why he is giving me the BCG treatments. Hr feels like that will kill all the cells and no surgery will have to be done. I am praying him and the entire team are on board with this. I am in a research group at the hospital.If things don't go as well as they hope at least they will learn something and it will help with the research.This sneaky little fellow needs to be found out.God gave us a certain time and only he knows when it is. But if they can learn even a little from each one the young ones will never have to go thru this. That is my hope and prayer that research will one day find a cure.My husband and I bought a little cabin in Colorado and are hoping to go out to stay a few times. But he has had two strokes so far in 2003 and 2005 but is able to walk with a cane and is Able to drive and take care of himself. So all in all we have both been blessed by the Good Lord. Enjoy a little of each and everyday.
Thanks for all your help. Fran

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

A cabin in Colorado sounds great. We all need to have a "dream get-away" to get us through this. I hope you're both able to get there soon and put this stuff behind you. My tumors were superficial (i.e., had not gone through the bladder wall to the muscle). BCG treatments have been very successful in resolving these issues, so there's every reason to believe you will have a positive outcome. Other than the discomfort/pain, the worst part of this is the waiting -- the time between your last treatment and the cysto that will show the results.

Fran Chandler's picture
Fran Chandler
Posts: 29
Joined: Feb 2010

I really want to thank you for taking your time to give me the time and advice you have given me. I know that you and your wife will have a long and happy life. Attitude is the biggest help anyone can have. You all take care. Fran

ketziah35
Posts: 1138
Joined: Jun 2010

My dad had bladder cancer and had his bladder prostrate and urters removed. He now has blood in his urine wich ia pink to red and no one can find out why. The CT scan revealed no kidney cancer or bile duct or gallbladder cancer. So I know how you must feel in a way. This cancer thing is like a bad lover thgat won't go away.

karenbutler's picture
karenbutler
Posts: 2
Joined: Mar 2011

My husband has bladder cancer that ended up spreading to bone, brain, liver,lung. they passed a law Social security did about Compassionate allowances so we would not have to wait so long for financial help but they still are treating us like any other illness. saying he will not begin to receive payments until august even though it stated on their website under the compassionate allowances act that they could only take 1 to 3 weeks. I dont know who to talk to about this. we will run out of money before then he is very sick and the only one of us that worked. I have two small children at home who they also did not included in his social security payments like they said they would. Its such a fight to get people to know and do their jobs correctly and I was raised up never to ask to for anything from anyone. we have worked all ours lives. i feel so ovewhelmed and i feel the state and y=u.s. goverment is letting us down at a time when when we really need them. I do not feel I should get a lawyer since he is documented as havinig stage 4 cancer of the bladder, bone, lympnodes, lungs, etc. I applied for social security in feb. beginning of feb. a week or so after we found out how sick he was. without my church and family we would be in big trouble but I cannot rely on them until august. i dont know whay to do. does any one else know what I should do.?

thanks,
Karen Butler

karenbutler's picture
karenbutler
Posts: 2
Joined: Mar 2011

My husband has bladder cancer that ended up spreading to bone, brain, liver,lung. they passed a law Social security did about Compassionate allowances so we would not have to wait so long for financial help but they still are treating us like any other illness. saying he will not begin to receive payments until august even though it stated on their website under the compassionate allowances act that they could only take 1 to 3 weeks. I dont know who to talk to about this. we will run out of money before then he is very sick and the only one of us that worked. I have two small children at home who they also did not included in his social security payments like they said they would. Its such a fight to get people to know and do their jobs correctly and I was raised up never to ask to for anything from anyone. we have worked all ours lives. i feel so ovewhelmed and i feel the state and y=u.s. goverment is letting us down at a time when when we really need them. I do not feel I should get a lawyer since he is documented as havinig stage 4 cancer of the bladder, bone, lympnodes, lungs, etc. I applied for social security in feb. beginning of feb. a week or so after we found out how sick he was. without my church and family we would be in big trouble but I cannot rely on them until august. i dont know whay to do. does any one else know what I should do.?

thanks,
Karen Butler

spartans71
Posts: 5
Joined: Feb 2007

I am assuming you do not have insurance? please request a meeting with the hospital social worker. They should be able to help you with the expenses of treatment. Also, your husband may be eliginle for medciaid and the hospital social worker should be able to also help you with this issue. Just another reason why we need health care reform yesterday.
Goodd luck and God bless.

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