Hello...we are new to the forum..hopefully tagging in here is ok. My 63 yo husband was diagnosed 3 months ago with stage 2 bladder cancer. Have gone thru 3 brutal aggressive rounds of chemo so far with one more to go. Removal of bladder is next. His health is ok so drs are offering neo bladder. We’ve read up about ileal conduit vs neo bladder but just don’t know what to do, sounds like many here have ileal conduit but is that just because they weren’t necessarily a candidate for it? Self catheterizing is not high on my husbands list to do but if it’s infrequent he might be able to tolerate it. I guess I’m hoping there are men with neo bladder that highly recommend or give us fair warning? Let me start with this and I can answer questions if that helps. Thank you folks..I’m sorry this forum is necessary as I don’t wish what my husbands going thru on anyone
Glad you are done. Out of the woods? Heck, we are never out the woods, something is gonna get us. Since my bladder cure (13 years+ free) I have had a triple bypass, carotid surgery.....both 4 years + ago, a melanoma cut out about 3 years ago. Result? I am probably better heath wise off than 13 years ago. Lesson learned simply enjoy each day we have on this earth and tell your friends and family you love them!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
I am five years out and I am very thankful that I don't have to go through it all again - so far. I too wouldn't wish bladder cancer on anyone. It was no fun. I feel very fortunate while knowing that I will never truly be out of the woods for good.
08/16/16 - TURBT - 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 doses total - last March, 2018). As of latest cysto, July 1, 2021 - cancer free!
Congrats on one year anniversary and thank you for sharing your journey up to now. Best of all, yes, you are very blessed to have such a caring wife. I know a fellow and his girlfriend fled as soon as he told he had bladder cancer and had to deal by himself with the recovery after radical cystectomy. Luckily he had some friends who helped him.
I personally know several people who had chosen a urinary diversion with an external bag. As you have experienced, the first year is an adjustment year with the change. But most say dealing with ostomy bags will become a routine and the life becomes routine. I believe your ostomy nurse will help you along when some issues occur and I believe there are many participants in this forum who have gone through a similar experience. So drop a question here whenever you have a question. There are a few things I remember an ostomy nurse and a physiotherapist has mentioned.
1. Drink 2 liters of water (liquid) a day. About 20 cms of the last part(ileal) of small intestine is now being used as
channel to remove urine (which tends to be acidity and has toxins which kidney excreted) to your stoma.
Drinking enough water will prevent urine to stay in the channel for a long time.
2. Avoid heavy rifting. It may cause hernia. If possible, hire a physiotherapist who has worked with the patients who had the same surgery as yours. They can help you to regain the strength in core without risking hernia.
3. It is known that the section your surgeon cut it out from the small intestine is the section vitamin B12 is absorbed in to the body. So, you may want to check your B12 level, which is likely your doctor has tested your blood.
In terms of chemotherapy, it sounds like you had neoadjuvant chemotherapy using MVAC. MVAC consists of methotrexate, vinblastine, doxorubicin, and cisplatin. I am glad that you were able to go through it as there are some patients who cannot tolerate the side effects of the chemotherapy. The neoadjuvant chemotherapy is supposed to kill microscopic cancer cells if it had escaped from the bladder. It is known to improve the prognosis
and survival rate. A study I read says Noadjuvant MVAC resulted in a 14% higher rate of complete remissions.
I think it is mechlorethamine (not methotrexate) which is based upon mustard gas which was used as a chemical weapon in WW I as you have mentioned. Mechlorethamine is also called nitrogen mustard. The chemical composition of mustard gas and nitrogen mustard is very similar. Both binds to DNA and stops the duplication of cancer cells. The difference is that mustard gas has sulfur (S) which is very toxic and affects the skin but nitrogen mustard chemo has replaced sulfur with nitrogen (N)which is not toxic. It is ironic that the chemical weapon which killed soldiers became the first chemotherapy to save cancer patients.
Incidentally, according to Googling, MVAC consists of four different chemo drugs each designed to kill cancer cells in different way. For example, (M)ethotrexate kills cancer cells by making folic acid deficiency. (C)isplatin as we already know is to kill cancer cells by stopping DNA dividing into two RNAs in cell division process.