I neglected to comment on the second part of your post, and that is the lifestyle changes that you have made. I strongly agree with your moves to eat better and exercise more. I went very bung ho on the lifestyle clean up. I read all that I could find on how cancer manifests itself, and unfortunately , the fact that modern western medical profession is hesitant to promote these changes as a preventative measure, it became quite obvious to me that we in the west are slowly killing ourselves. I’m sure that the appropriate surgeries and follow up therapies are essential to dealing with this disease, what we do to help with the process is also very important. It’s just nuts to enter into BCG treatments or other immunotherapies,with the premise of coaxing your immune system into beating back and not doing everything in your power to help it out. For me the sense of empowerment, that I could actually do something to help , meant everything. Orillia
A little background on my history. I was diagnosed with T1 sarcomatoid bladder cancer 22 months ago . I submitted my pathology reports to two other urologists after my specialist strongly recommended RC and they concurred. It is now 19 months since my RC with neobladder and the results have been very good. The point I wish to make to you is that even with all the % ‘s on my side for reoccurrence , ( 3 - 5% ) , you never stop worrying that it may return. The best you can do is read as much as you can , use these terrific forums to get real life experiences that the scientific papers and reports don’t provide, get second and third opinions, and when you feel confident that you are adequately informed, then you can make your decision. I don’t for a moment regret the decision that my wife and I made. Good luck. Orillia.
Thanks for the compliment! You will and/or doing well with BCG! When I tell people it is "one day at a time" it still begs our mortality we face. The old joke of two things certain are death and taxes! I try not to get too low in life as all of us know people that have or fighting worse diseases. I just lost a good friend to ALS and I can not imagine a worse way to go!
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.
My wife and I read "Back to Life" which is a life account of Frank Sadowski and his fight against BC. He decided to skip the BCG treatments and had a RC early on (neo bladder). His doctor told him that the BCG treatments was like playing defense in football (a lifetime of BCG procedures and monitoring). While getting a RC was like playing offense in football (you nip the cancer from the offset and live with the new normal of the RC).
My doctor at UCSF gave me the probability of success of BCG treatments, and it looks as if the success rate justifies the procedure before a RC.
Sounds logical, eh? Except I worry a lot if the cancer will come back now. And if it does, will it come back with a vengeance!
I have been thinking about how I can help my immune system fight against this cancer. And I am trying to eat less sugar because cancer cells thrive on sugar. I am sitting mindfully and quietly to breath deeply as to supply my body with oxygen because cancer cells thrive on non oxygenated environment. Also, I am eating a plant base diet because cancer cells thrive in a acidic environment. I am drinking more water and special tea to cleanse by body. And I am doing light exercise to keep the juices in my body moving and to increase my metabolism.
I am not sure if these life practices will keep my cancer at bay, but I feel I need to do something that I can do, and besides, they make my body feel good at the end of the day. Alan, you have taught me to accept my life one day at a time. I feel these things are improving my life and I am enjoying what I am feeling on a day to day basis, even though I might have this cancer come back.
Plus, being with my wife and cats is the most important experience I have.
Having the means to be treated medically and improving my life experience is the best I can do. Sorry for the rambling....
I posted essentially the same question on another bladder cancer forum as JoeGrills (my real name) and got the following responses :https://www.inspire.com/groups/bladder-cancer-advocacy-network/discussion/high-grade-non-invasive-bc-recurring-bc/?page=last#replies
You'll note that some patients that had an initial high grade non-invasive tumor had subsequent low grad tumor recurrences