I had my first in-hospital TURBT in 2007 (removing a large tumor plus a large bladder stone), my second in 2013, my third in 2016, and my fourth this week (June 2018). All these were performed in the hospital under anesthesia - to save me pain. Over the years, I have had eight other milder fulgurations of bladder tumors done in the urologist's office with just mild pain - so over the past 11 years, I have had bladder tumors removed a total of 12 times - 8 just from zapping in the doctor's office, 4 under anesthesia in the hospital. The last two visits to the hospital, I was told that he could have easily done the TURBT in the office, but he worried about causing me pain. Over the past 11 years, I have had 31 cystoscopies, of which 8 were followed by tumor resection in the office, and 4 which were followed with hospital visits. All the tumors so far have been non-invasive, and although I am 88 and have numerous aches and pains of old age, I feel generally OK even after numerous TURBTs. Each person and I guess each tumor is different, but if the tumors remain non-invasive, you can keep enjoying life for many years as long as you go in every few months for another cystoscopy to check for regrowths. Back in 2010, I had thiotepa treatment for 6 weeks, and following that, I had no regrowths for three years. Been trying to convince my doctor to try that again.
I have been following your posts and first let me say that it is wonderful that your father has such a loving advocate.
One of the problems with doing a lot of internet research is that it is very hard to weed out what is applicable to your fathers case. There are multiple types stages and grades of bladder cancer and even if all is equal no two cases will ever progress in the same way. I know as humans we want A to equal A but everyone is different and thier paths will differ because of these differences. Another problem is that if you do a search on cancer you will get over a million matches. Now they tell us that 10% of all internet sites are a scam so that gives you a 100,000 off the top to watch out for. Then there is the whole subset of people that will tell you they cured thier cancer using this or that. They have no studies to show that thier cures work other than antidotal reports. They say things with such authority using great key words that one can walk away feeling they maybe onto something. We have to be very careful because opinion without proof in this case can be deadly.
Your list for juicing was impressive to say the least. I have seen cases where the juicing cased gastro intestinal problems and people were actually losing nutrients. It is always a good idea to talk to your fathers doctor to get a referral to a nutritionist. I read research day in and day out and the conventional wisdom is a balanced diet high in vegetable content is the best bet. Broccoli does show promise in research, check it out. The key in my humble opinion for all of us cancer survivors or not is clean water, clean food, clean air and exercise. Be aware that people are dead because they decided they could beat cancer with unproven alternate therapy found on the internet. Some alternative treatments may have a place in your fathers treatment but always make sure to discuss them with your fathers doctors to make sure they don’t interfere with his conventional treatment path.
The changes to the dna in the bladder lining that allows the cancer to grow started many years ago maybe in his youth, cellular changes is the reason that bladder cancer has a high rate of reacurrance. Some people have a noninvasive tumor get it popped out and never deal with it again clean check ups are the norm. Many doctors see low grade nonivasive bladder cancer as being a nuscance cancer and for many it is as easy as that. Low grade can take years to grow as you said but low grade is the key. Once you get into high grade you are dealing with another beast entirely. Grade tells you how quickly the cells divide, stage tells you how advance the growth is. Now low grade can reacure and stay low grade or become a higher grade. That is the reason you have to stay faithful with your checkups.
I wish your theory that just getting TURBS over and over if needed was the answer and for some it may be. But when you get into high grade that is not the case. For many with non invasive high grade or even low grade with multiple reaccurances BCG a non active form of the TB virus or other agents are instilled into the badder and has been found to be in many cases effective. If that does not work Radical Cystectomy has proven to be life saving for many. I myself was diagnosed at 48 with invasive high grade bladder cancer. I was terrified of losing my bladder and chose to take part in a bladder sparing protocol using radiation and chemotherapy. Even during treatment the cancer returned again and again and was fast growing. If I had not had a Radical Cystectomy 12 years ago I would not be sitting here today. I live a good full normal life in every way, it was not easy but sure beat the alternative. My point being there is no one size fits all easy answer here. Research is not a bad thing in its self but your first line of defense has to be a Urologist that deals primarily in urological cancers that you trust to set a treatment plan that fits your fathers situation.
The reason I replied to your post was to remind all of us that this is a very complex multifaceted disease that people have studied for a lifetime and still do not have all the answers. We can not hope to find the answer on the internet it is not there. Again your first line of defense has to be a Urologist that primarily deals with bladder cancer that you trust.
Good luck and keep us informed.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
I recently read an article where someone had 11 TURBTs over 10 years, and he was very happy as he could keep his bladder.
I did a lot of research and if the tumor keeps returning, it's usually T0 or T1 stage. It takes many months (or years) for it to become a T2 or worse. Worrying that it could spread outside of bladder is over-reaction and bladder removal is over-treatment.
I will suggest to our doctor that we keep doing TURBTs if the tumor comes back. You just scrape it off, and live for many months happily again.
A TURB has two main purposes....to remove any removable tumors and to obtain samples for pathology. If it came back a third time the urologist would do a TURB to determine the grade and whether the cancer had spread beyond the bladder.
IF the bladder cancer keeps returning multiple times the danger increases that it could spread beyond the bladder. In that case, bladder removal would not cure it. If caught in time, bladder removal does cure it. If, however, it has spread the prognosis is not nearly as good. While not something we would wish for, bladder removal is not the end of the world. I would much rather live without a bladder than not live at all.
However, at this point you are worrying about something that probably will never happen. Better concentrate on today, not what MIGHT happen tomorrow. And watch out for big trucks when you cross the street!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society