-
Confused & a Bit Scared
I’m sorry that my first post is all me, me ,me. It is also quite long but i feel the need to get things off my chest so to speak. it, I have just found this website, thank goodness, and I’m looking I suppose, for people who have gone through the same experiences and come out the other side.
My story starts in May 2007. My wife and I are motorhomers who like to spend the winter months in Portugal, in order to avoid the British winters. Anyway, having returned home, one day after going to the loo, I noticed that there was blood in my urine. It only lasted for a day but it was clearly no small amount.
Having friends who have been diagnosed with Prostate cancer, and having a slightly, enlarged prostate myself, I thought it best to visit the local GP. Not really expecting major problems. Indeed the Gp having given me a quick once over declared that the blood was most likely caused by passing a stone.
Anyway, the GP ordered some blood and urine tests, to be followed by a check Cystoscopy. The results showed that I had Transistional Cell Bladder Cancer. I was admitted to hospital for a TURBT in July. At a follow up appointment, I was informed that they had found Grade 2 stage 1 cells and that I would need to have a further biopsy and a six week course of BCG. All this to commence before the end of August(last year).
In the event the end of August slipped to the middle of September, before the Biopsy took place. After coming round from the operation I was informed by the Registrar, that there was no visible sign of cancer and that I would not need to undergo the BCG therapy.
I did query this , but was informed that there was no need for BCG. I was left feeling concerned and confused about this conflicting advice. In addition I was also left with a urinary infection which took some clearing up.
However, I was given an appointment to see the urologist, for the 4th of October. Ha, I thought a good chance to clear the air and sort this out.
Unfortunately, on the evening of the 3rd of October, I suffered a heart attack. Which, vey nearly killed me, but seemingly, has not caused a lot of heart muscle damage. I eventually, got to see the man himself (consultant) in November. i was told that i needed to start a course of BCG treatment which was carried out during November and December. Seemingly, I had Carcinoma in Situ, but it had not invaded the bladder wall.
Anyway, and I do aplogise for the length of this post, I had the treatment, and at the end of February, underwent a further biopsy, which revealed more tumour. I have now been informed that the cancer has progressed to grade 3, and is attacking the bladder wall. Furthermore, I need to have a full body scan to determine if the cancer has spread, to be followed by Chemo/ radical cystectomy.
At the moment I am waiting for my scan appointment, and wondering whether I might have not been better off not surving the heart attack. The thought of going through life attached to a plastic bag, given that I can survive the surgery, apparently the risk of another heart attack is considerable following surgery, Is, frankly a bit scary, and not something I’m sure I want to do.
I know that the treatment will depend, to a large extent, on the results of the scan. Can you really enjoy life, please excuse the language, peeing into a plastic bag, having been literally gutted by the surgery.
I need information from guys who have been there and got the tee shirt so to speak.
Anyway, thanks for reading this post, I admire your tenacity, if nothing else.
Regards
Paul
-
9 Replies
-
Snowy,
I to had an r/c on Sept. 14th of 2007, I now have the bag. Once I thought I cannot do this bag thing but have become use to the fact its part of my life now. I was stage 3 T-2, I have no cancer outside the bladder, a clean path report after surgery. My friend you will make it through, and you will survive, live isn’t so bad with the bag, just a small incovenience. We do everything we did before, no problem traveling, it just seems unthinkable now, but after you are done you will see its all okay!!!!!Gene -
I am a candidate for an RC, had my scans done, and am waiting for the URO appointment that will determine when the op is to take place. I am going with the outside pouch for several reasons. I am 64. I figure I will get used to it, will probably end up not thinking about it a lot, other times, might have to hassle with it. In any event, extending my life to enjoy my family, my grandkids, is my greatest consideration. There are a lot of other “disabilities” that would be a whole lot worse than this one. So, we should all take heart if we get that other chance.
BC diagnosed 01/2007
Cystoscopes and Miomyacin in 2007
R/C ilial conduit 04/27/2008
Hello PeterK
Thanks for your response. I’m glad to hear that you are doing okay. I know that coming to terms with the bag is a matter of time, its just that the scale of the change is a bit daunting. I think that the sudden change of direction of the cancer has caught me a little unprepared.
Anyhow, thanks to all who have sent me good wishes.
Regards
Paul
Hello Paul,
I can relate to your story. My doctor for two years told me I had passed kidney stones until I finally saw a urologist who identified stage 3 bladder cancer and I had a RC in 11/07. So far, my follow-up tests are clean for mets. I didn’t have any chemo and the operation was not that bad as long as you have pain drugs. I have a bag, which started out as a bother, but you get use to it and it doesn’t hamper any activities. At 67, I decided that a neo-bladder sounded like it could become a nightmare. Yes(I am also pain free)you can really enjoy life even if you have to pee into a bag. I watch my grandkids grow, enjoy my daughter and friends as wellas fight with the wife of 48 years. Unfortunately, the american docs remove the nerve that enables you to have an erection, but there is a solution for it involving a needle into the base of the penis. Gene Beane is going to try it, and I am waiting to see if his dick falls off (HA HA). I understand some surgeons can replace the nerve with a nerve from your ankle. You might want to talk to your doctor about it. Paul, I hope your scans, etc. come up clean and God keeps you safe during and after your RC. Don’t pay attention and worry about negative survival rate percentages, as my wife (breast cancer survivor)keeps telling me; “until you find out different you are in the percentage that survives”. Let us know how you are doing.Regards,
Peter Konomos
Tempe, Arizona
Thanks guys for the responses. I guess that feeling a bit down is all part of the problem. I think that the waiting is almost the worst part.
Regards
Paul
Paul there are 3 diversions you can get but you having suffered a heart attack the Ileal Conduit Bag is a less stressful and shorter surgery I have a friend who was in your boat ( had a heart attack ) and he has the bag and he is doing fine. I wanted the neobladder but when they opened me up I had cancer cells around my uretha so no neobladder so I got the Indiana Pouch and I am quite happy with it never leaks, it wasn’t what I wanted but now I have learned to live it and I really like it things happen for a reason. The question is if the bag say were you’re only choice would you be happy peeing into a plastic bag in order to live, I know I sure would. None of us wanted this cancer and no matter what diversion they give you nothing beats having your real bladder and then you have all the other consequences to deal with but it can be done. I have my days also some are good and some are not so good but I consider myself a lucky guy to have survived. All this piling up on you but you survived your heart attack and if you get the bag I guarantee you will be happy you did down the road life is so valuable and sometimes we have to deal with situations to survive. I wish you the best on your decision. Cheers, Joe
Hi Dale,
Thanks for the encouraging words!! It sounds like you are making great progress. I too am hoping to go back to work at the 4 week mark. Fortunately, I live very close to my place of employment, and my boss has promised to help me transition back to full employment gradually if necessary.
Thanks again,
Dan
Dan,
Next week when you get your catheter removed will be a great day and the first day of a new life. This week you should be plugging the catheter and stretching the neo-bladder and this can be a little uncomfortable. I am 17 weeks post-surgery and mine is working great, sleeping 4 to 5 hours at a time at night and I returned to work after 4 weeks. I just wanted to say good luck and remember we all had to learn bladder control as babies and this will take a little time as well but it gets better every week.
Dale
Houston, TX
Hi Paul,
Sorry to hear about the inconsistent diagnoses that you received so far. That must be very frustrating.
However, it’s possible (even probable if the cancer is still contained in the bladder) that you will have a good outcome.
I had high grade, muscle invasive diagnosed on November 5, and had my bladder removed on March 13. The surgeon constructed a neobladder, which was made with part of my intestines. I won’t have my catheter removed until next week, and then it will take a while for me to adjust to the neobladder. At this point, I am very optomistic.
As you are probably aware, the external bag is only one of three possible options. That being said, people who have the external bag are generally quite satisied with them. In fact, from what I’ve read, people seem to be satified with their choice of urinary diversions, reguardless of which one they ended up with. They each have their advantages and disadvantages. Generally speaking, people say that life goes on pretty much normally after they become used to their new equipment.
The important thing is to get the best possible care available to you. The success of your outcome will be related to the skill of your surgeon and his team. It’s best to choose a team with lots of experience.
The collective knowledge and experience of people on this forum will be very helpful to you.
Best wishes,
Dan – FloridaSign In to reply.
