My husband is 51 yrs old and was diagnosed with colorectal cancer 2+ years ago. He had his entire large colon removed and had a colostomy done. He was treated with radiation and 5FU. Last fall, the cancer "came back." He had an intestinal blockage from tumors, which they were able to temporarily relieve thru surgery. He was treated with CPT11. His cancer has spread again, despite the chemo. It is now in his liver. He just started Xeloda, which he opted for because of the (to him) unacceptable side-effects of the new chemo Oxyplatin (sp. His kidneys are involved and he has had 3 surgeries to have ureter (sp) tubes re/placed...His oncologist is withdrawing, it seems and seldom answers questions directly now...Can anyone tell me what to expect health-wise for my husband? We want the truth so we can prepare...Heartfelt thanks to anyone who can help.
I feel for your pain, as I have been through the same thing with my mother. My mother was diagnosed with cancer of the bile duct, and went through numerous procedures, and an operation to have it removed. She lived 2 more good years, then it came back. They would not do anything the 2nd time for her. It was the absolute hardest and most stressfull time in my entire life. What got me through it was the hospice my mom signed up for through the hospital. They helped and prepared us more than anything, so we knew what to expect. She got to stay at home, we all took care of her, and hospice came in to check on her, answer any questions we had, and also gave us pamphlets to read. They told us step by step what was going on and what to expect next, there were no shocks or surprises. I talked to my moms doctor in private and asked him right out how she would go, so that I could prepare myself mentally. I also learned from hospice what would help her and what would not, as it is up to the person what treatment they want or do not want. Is your husband in the hospital or at home and what type of treatment is he getting right now? I would see if they have hospice services where you live, and sign up with them, they were a Godsend for me. I would be happy to answer any more questions you have. Kamden
Some patients and their families don't want to know exactly what the medical prognosis is, and this may be why your husband's oncologist appears to be hanging back a bit. My mom managed to speak with the doctor while my dad was not there - she needed to know what was ahead while my dad never ever spoke of it. Once my mom asked, the oncologist was very straight with her.
Another thing that will help you prepare would be to get a copy of the biopsy reports. The "staging" of the tumor(s) in colo-rectal cancer is a real indicator of the outcome of the disease.. There are many websites available to help in understanding the technical language(not to mention the wonderful people on this board).
And, I can't tell you enough how right Kamden is about Hospice. They are wonderful. They are compassionate, practical and knowledgeable during an incredibly difficult time. Most insurance companies will even pay for hospice services if certain criteria are met.
In my family my mother & I grabbed every piece of information we could and did research until we were practically ocologists ourselves, while two of my sisters and a brother preferred to find things out little by little when things happened. If you let your husband's doctor know your comfort level, I am betting you will see a difference in how forthcoming he is with you.
And mostly, please keep a small smidgeon of Hope in your heart. Hope that he will be as pain-free as possible, hope that others have a chance for a relationship as strong as yours, hope that you will someday help else who is in your situation down the road..
Between my Dad's diagnosis & his death, most people avoided asking me how he was - except on Boards like this and in Hospice. It's weird that at a time like this a "stranger" who has been through it can sometimes be of more help than a friend who hasn't & who truly doesn't know what to say.
Please let us know if you have any questions.. Someone here always seems to have either "been there" themselves or have an excellent medical website to direct you to.
Hang in there, you are so smart to look for every avenue of support that you can find!