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Dad’s story of metastatic cancer
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.
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10 Replies
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Hi Tom’s Son
It’s been awhile since you’ve posted and I was just wondering, whats going on with your dad? My husband is doing pretty good for the most part.The cisplatin and gemzar cocktail didn’t work for him so they tried a few others(taxol,taxotere) which he had allergic reactions to. he is now trying a different one (ifosimide?) he is admitted to the hospital for five days for treatment. we won’t really see how it’s working til they do another bone scan hopefully they will do that next month. anyway hope to hear from you I do keep you and your family in my prayers. Jeannette -
Thanks for the info Wendy, very helpful. And no, this is a different oncologist who is very good, so we are happy with that.
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Hi Tom’s Son,
So sorry to hear how things went, but don’t blame yourself or your family…we put our trust out there, we are not oncologists. I’ve been there so I know how you feel. I lost my sister to breast cancer, another sister got bladder cancer (she is doing very well!) then I got breast cancer too. I’m fine too, I learned a lot from my poor sister’s disastrous experience…did things very differently and still here.
Gemzar is actually less toxic than Taxol or Carboplatin. The good thing is that all those drugs work for both breast and bladder cancer. Most breast cancer is HEr2 negative, but more aggressive cancers I’m sorry to say are HEr2 positive. Whichever cancer caused the liver mets, Herceptin is the drug of choice so your father’s doctor sounds like he has learned something (if it is the same one who lost control of the situation in the first place). Zometa is pretty state of the art, as is Herceptin.
The rule of thumb is that once a person gets cancer their risk for developing a 2nd primary is bigger. We become cancer friendly environments, I guess. Horrible thought, I know.
I wish you and your family all the best,
Wendy -
OOPS forgot to say good luck to your dad hope all goes well for him on friday,, I know the zometa is suppose to be very helpful for the bone mets,, (my husband is suppose to get that with his next round of chemo)
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Thanks for asking about my husband unfortunately he isn’t doing so well he went in for his chemo last monday (oct.30) and it made him terribly ill, he was suppose to go for his 2nd round yesterday but was still to sick to make it, he reshuduled for tommorrow but not sure if he will be up to it. I leave it totally up to him, he is the only one that can make the decission.. I’m just so heartbroken over the whole thing
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They have biopsied (sp?) the breast and said that the breast was a second primary site, defintely breast cancer. So what they have tried to figure out is whether it is the breast or the bladder cancer that spread to the liver and bones. They have done numerous “stains” on the liver trying to ID it and it was not conclusive. But the liver was HER-2 positive and the breast was not HER-2 positive. I think that most breast cancers are HER-2 positive. They treat it with Herceptin, so he has been on that and it may be the reason that the liver reacted well to the Herceptin.
He is feeling pretty good, now a few weeks off chemo, but still fatigued. He goes for second 3-week dose of Herceptin (and Zometa for bone) this Friday.
How is your husband doing?
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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.. -
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.
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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
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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
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