Dad's story of metastatic cancer

17 years 4 months ago #1903 by Jeannette
Replied by Jeannette on topic Dad's story of metastatic cancer
Hi toms son
hows your dad feeling? hopefully he is having a good day,, i have a question for you,, when you say it may be breast cancer you don't know.. did the doctors biopsy it? i'm just wondering if the bladder cancer metastised to the breast..

Please Log in or Create an account to join the conversation.

17 years 4 months ago #1834 by fightcancer
Replied by fightcancer on topic Dad's story of metastatic cancer
I agree that second opinions are necessary, we learned that too late we feel.  We went for a second opinion on the bladder, to a different urologist, but it had already spread to the liver and bones at that point.  We have also sought two opinions on the chemo, kind of complicated, but we are staying with the first doctor we went to.  The lesson we have learned from superficial bladder is to continue to ask questions and seek a second opinion early.  The BCG treatments are clearly the standard of care, but my dad had Carcinoma in situ (CIS) the second time it came back, which as I understand now is more likely to become invasive and spread.  Therefore, taking the bladder out would have been the better option at that point (or at least to have that explained and have that option would have been nice).  And don't apologize for your comments toward the doctor, you sound just like my mom and our family, we weren't happy in retrospect with the lack of information.    

Dad's cancer reacted well to the first 6 months of chemo, but again, his secondary cancer may be breast, not bladder, we just don't know.  Therefore, the Taxol and Carbo were used and yielded good results.  But as I understand, Gemzar is normally used for bladder and secondary bladder.  And I think the toxicity is worse.  I am sorry to hear that it is hitting him so bad.  My dad hung on to something Lance Armstrong said in his book or somewhere, which is that the worse he felt, the more he believed the chemo was working (it is, after all a poison, so if it is killing good cells, it must be killing the bad ones too).

I am thinking of you and your husband as well, keep up the positive thinking during this second cycle.  Take care.

Please Log in or Create an account to join the conversation.

17 years 4 months ago #1832 by Jeannette
Replied by Jeannette on topic Dad's story of metastatic cancer
let me start off by saying  my heart goes out to you and your family..i know what a shock it must of been to your  family to get such bad news.. i do hope that your dad stays strong and keeps a positive mind..in my husbands case we had no idea the news was going to be so devasting.. like i said before if i would have known superfical bladder cancer could spread the way it did, i would have demanded testing , but unfortunately i was ignorant  and when the doc said there was no need for futher testing i took him at his word (what an ass) sorry can't help but blame myself.. my husband started his 2nd cycle of chemo on monday (1st week gemzar and cisplatin 2nd and 3rd week gemzar 4th week off) the 1st week got him deathly ill last cycle and it looks like it may be doing the same this time he is feeling sick to his stomach now,, i do believe in the power of positive thinking and i will not let any negative thoughts go through my head,, its hard to watch someone you love with all your heart in pain.. has your father considered getting a 2nd opion? i now think its always good to hear from more then one doctor.. good luck and best wishes to your dad i will keep you and your family in my prayers

Please Log in or Create an account to join the conversation.

17 years 4 months ago #1828 by rentanag
Replied by rentanag on topic Dad's story of metastatic cancer
There are medical professionals who believe that 61 is old, but then they're probably in their 30's or even 40's and 60 seems a long way off.  There are many people who have survived different levels of metastatic disease (all cancers), and so I believe (but what do I know, not much) that your father's doctor who suggests to you that your father needs palliative care and maintenance may not necessarily be correct.  There's a book I've suggested to many others on this site that was written by a man who had been given thirty days or less to live as he had advanced lung cancer.  His doctors told him to get his life in order while he still could, but instead of giving up he started working at making himself stronger, and searching for others who'd been told the same thing who went on to survive.  He used the things he learned to help him fight his disease, and many years later he is still alive.  Greg Anderson is the author of the book titled CANCER 50 ESSENTIAL THINGS TO DO, and although it's not a guarantee of recovery I believe the author has put together some very interesting information.
There's another book I read not long ago that I found very interesting, and it's title is SURVIVING CANCER EMOTIONALLY Learning How to Heal, by Roger Granet, M.D.(he's a consulting psychiatrist at Sloan-Kettering Cancer Center and much more that I won't add here).  He offers real life examples of patients he's treated, and he also offers information about dealing with diagnosis, treatment, asking questions, and other places to search for information. This book might also offer you and your father information to help him in his fight against the cancer that's in his body.  
I do hope some of this information is of assistance to you and your father, and I offer my best wishes to you both and my prayers as well.

Lou Graham
RC/Ileal Orthotopic Neobladder 2/2004

Please Log in or Create an account to join the conversation.

17 years 4 months ago #1819 by fightcancer
Dad's story of metastatic cancer was created by fightcancer
My first post on here as well.  Sorry for the length.  My 61 year old dad is going through something very similar to what Jeanette described and I wanted to share that you are not alone.  He was diagnosed with superficial bladder cancer in 9/03.  He had first BCG and was clear until 2/05.  He then had second BCG and follow up in 9/05 was clear.  But then follow up in 12/05 showed cancer cells in washings in the bladder.  At the same time we were testing to see whether it had spread up into the ureter and kidneys, he had a CT scan of his chest and stomach.  Bladder and ureter were negative, but CT showed lesions in the liver.  He had an MRI and biopsy of liver.  The tests confirmed malignant lesions in the liver and it was likely secondary bladder cancer.  While consulting with surgeon, PET scan done and showed possible cancer in the pelvic area and breast (3/06).  Unbelievable, he had a small mass in his breast that he noticed a year before and it was treated with simple antibiotics.  But it was a second primary site of cancer, breast cancer this time.  So there was/is a chance that the liver was secondary from the breast, not bladder.  The biopsy of the breast showed an early stage of breast cancer.

He then went to an oncologist in 3/06 and was experiencing pain in the hip.  Simple x-ray showed a fracture and likely cancer in the bone in several spots in the hip and pelvic bone.  

Doctors recommended radiation first, then chemo.  He went through 15 treatments of radiation in April this year.  They hit the pelvic area, bladder and prostate area just to be safe.  It was very difficult, but he was strong through the whole thing.  The biggest side effect was on his bowel system since the radiation was focused in that area.  The pain has subsided even until today, so the radiation worked really well.

Next was chemotherapy to treat the breast, bladder and secondary sites.  He started with Taxol and Carboplatin once a week for four weeks, two weeks off, then four more weeks on, two weeks off.  During each week (even the off weeks), he also gets Herceptin for the breast cancer (and his liver lesions are HER-2 positive).  He initially did two cycles of this treatment (12 weeks total).  He had a CT, lesions in the liver were reduced.  He went through another 12 week cycle with the same treatments.  Again, some reductions in liver lesion size and the bladder looks good on the CT as well.

So he finished 6 months straight of chemo and the tough choices now came.  In the first week of October, at the recommendation of the oncologist, we stopped the chemo to take a break.  The oncologist explained that the benefits of the chemo would go down while the toxicity and side effects would increase.  A tough decision, but I think he is happy with it.  It is tough to stop even temporarily because you feel like you aren't being aggressive or fighting, but it makes sense.  The doctor says it is unlikely that the lesions will ever disappear completely so that surgery on the bladder or breast are unlikely.  Words like palliative care and maintenance are being used, which is very tough.  But he looks great and on some days feels pretty good.  He fights fatigue and neuropathy (sp?) in the legs (numbness).  My mom and dad are both going to counseling for the first time next month, which is great and I highly recommend.  

We have gone through the blame issues as well because there were questions about if the second BCG should have been administered (rather than removing the bladder- he had CIS at that time).  So we are trying to learn our lesson this time and continue to ask questions and seek out second opinions.  

To Jeanette and others that have asked similar questions, I have no answers on keeping spirits up, I am not close to home, so don't deal with it on a daily basis.  I know that getting him out to football games cheered my dad up and gave him an escape for those few hours.  But with football season coming to a close and the winter coming up, a new hobby would be great.  Please keep writing Jeanette and others and I will as well.  Good luck with the first few months of chemo.

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne