Bladder cancer TCC
Sun, 15/02/2009 - 12:24
i am a 49 year old male and was diagnosed with bladder cancer (transitional cell carcinoma) 2 years ago, my urologist was goiing to remove my bladder and sent me for a ct scan first and thats when it was found to have spread to my liver. i had a liver biopsy and it was confirmed to have metastasised from the bladder to my liver, they also found a spot on my lung. i went on chemo and the urologist decided not to take my bladder out. 18 chemos later i was found to be in remission. i had my last ct in August and was once again found to be in remission. On Oct 1st 2008 i went to work and found i could not type anything as i couldnt find the keys on the keyboard. i got in my car and drove to my oncologists offices. on ther way i was stopped by the police as i was driving with my door wide open and i only had one shoe on. they rushed me off to the oncos office. i was admitted to hospital and had a brain scan where they found a 50mm tumor on my brain. I had a craniotomy on 20th October 2008 and the tumor was complely removed. i am now recovering at home and am getting stronger every day. I am going for 9 blasts of radiotherapy starting on monday. they biopsied the tumor and it was a secondary tumor. the primary cancer being bladder cancer. who would have even guessed. i feel i have been truly blessed and thank my lucky stars. it could have been much worse.
Sun, 15/02/2009 - 12:26
#2
Bladder cancer TCC
Hi Slipslop, You sure have been through some wars, you've certainly got the right attitude. How did you go with your first round of radiation. I didn't have radiation or chemo, just the operation. I'm having a few problems at the moment, a little bit of blood in the urine. I've had a urine test, see my GP for results on monday. I go back to the Mater in Newcastle on the 18th Dec, to see my oncologist, if everything's ok, it will be twelve months before I go back, if not, on the roller coaster ride again. Wazza
Sun, 15/02/2009 - 12:27
#3
Bladder cancer TCC
Hi all, I'd like to share my journey with you. At the age of 57yrs. I was diagnosed with Bladder Cancer, Muscle Invasive/TCC. I was a very fit man, going to the gym three times a week doing a heavy workout. I'd never been sick or hospitalised before. In march 2005, I was diagnosed with TCC cancer in the bladder. The cancer had gone through the bladder wall into the muscle. I had two operations, one to remove the tumour and a second which took nearly thirteen hours to reconstruct a Neobladder, where surgeons removed 42cm of my bowel to reconstruct a new internal bladder, connecting it up to my internal plumbing. There are some changes you have to make to your life. For a new internal plumbing job, it's a small price to pay. If there is anyone out there who need answers to this procedure, please contact me, there is so much more to tell. I will answer all your question asap. Cheers, Wazza
Sun, 15/02/2009 - 12:27
#4
Bladder cancer TCC
hi wazza reading your posts, you seem to have been through the wars yourself. i hear that that type of operation is very painful. im lucky that i have had little to no pain at all. when i had the craniotomy i dont recall getting a single injection except a blood test or two, (i freak out at the sight of a needle). the worst part was the catheter aaaargh. i also had a catheter when they did a cystoscopy in 2007 it was in for 9 days and boy was it sore when they removed it. i still cringe thinking about it. i havent started the whole brain radiation yet i get zapped this coming monday. my oncologist wants me to have a course of chemo as well aaaaargh i had taxol and carboplatinum last time and as lousy as the side effects are, it was very effective. i had a full response. like they say what doesnt kill us makes us stronger, anyway cancer is just a word, not a sentence. im sending you good vibes
Sun, 15/02/2009 - 12:28
#5
Bladder cancer TCC
hi slipslop! my radical nerve sparing neo bladder cystectomy (sounds impressive, does'nt it?) did'nt hurt at all, rather, it was mainly a lot of discomfort. What gave me pain and literally the sh*ts was the fact that my bowels went on strike on the day of my hospital discharge. I've been told that I sometimes talk crap, well, the crap had only one place to exit and that was via my mouth. I literally talked crap for about a week and lost about fourteen kilos in weight, otherwise I felt O.K. All that added an extra week in hospital (three weeks in all.).......Speaking about catheters, I once pulled my own out, cut the little balloon part and slowly pulled it out....great party trick, but I don't think I would do it again......Enough about me. I hope your radiation goes well on monday and maybe another round of chemo is just what the doctor ordered!...another full response would be great. Considering what you are going through, you have a great attitude. Good vibes to you. Wazza
Sun, 15/02/2009 - 12:29
#6
Bladder cancer TCC
Hi All, I've received my medical report, and things aren't working out too well for me. My TCC cancer has returned after four years. There's a mass of 38cm x 37cm x 36cm between my neobladder and my rectum. The tumour has penetrated my neobladder causing bleeding. I've had a catheter in a few times, due to my neobladder blocking with blood clots & mucus. I feel fine, look the picture of health. My specialist are having a meeting next week to see how their going to attack this. As its secondary, it will be palliative care. I have a friend that had the same operation as me about two years prior. He's doing fine. He hasn't had a problem since his operation. No sign of cancer what so ever, and he's in the best of health. Wazza
Sun, 15/02/2009 - 12:30
#7
Bladder cancer TCC
Hi Wazza,I'm sorry to hear the news.Just wanted to say I'm ending you my best wishes. Keep us updated,Totocol
Sun, 15/02/2009 - 12:31
#8
Bladder cancer TCC
At 85 year diagnosed with bladder Tumour,at 86 Had tumour removed, do not as yet know report.From second day bled profusely, and continued for aboutFour weeks, When suddenly stopped , at this time I began to feel very weak ,and could only walk a few paces ,then completely out of breath and collapsing,was then taken off Clexane, for two weeks,before resuming Warfarin.I am now physicly useless, cannot bend down,or walk far withouthelp, this is imposible as I live alone , since my late wife died of lung cancer, three year ago.There does not seem to be any assistance available, just my GP .is treating me for multiple problems.
Sun, 15/02/2009 - 12:32
#9
Bladder cancer TCC
I've just read your post. Things aren't going too good for you at the moment. Have you contacted the cancer help line on 131120. They can help you in so many ways. You must tell the cancer council of all your concerns, so they can get the right help for you. You shouldn't be going through this stressful time on your own. You need to ask for help. The cancer council is the first stop for you. Think about all of your needs & write them down, have that list in front of you when you ring the cancer council, so you don't forget anything. Let me know how you go, Wazza
Sun, 15/02/2009 - 12:33
#10
Bladder cancer TCC
My dad was diagnosed with high grade invasive carcinoma of the bladder 06/08 and had surgery 09/08. the tests revealed papillary cells and has spread into the lymph nodes. the doctor has not stated the severity of the cancer in the lymph nodes yet but has taken this case to a tumor board which I know means it is malignant. he has complications with blood clots in his legs and an enlarged aortic root at 4.7 cm, which requires reconstructive surgery at 5cm. he also has epilepsy. with his surgery he received a stoma instead of re-constructing his bladder. I know the outlook is grim and am trying to come to terms with it. What I want to know is how long do I have left to spend time with my dad?
Sun, 15/02/2009 - 12:34
#11
Bladder cancer TCC
Hi, I'm sorry to hear about your dad's diagnoses. You asked, how long your dad has, I don't think anyone could answer that question. I know how devastating you must be, seeing what your dad is going through at the moment. I had bladder cancer, high grade, muscle invasive, it's over three years now, and I'm still here. My wife had lymph node metastasis six years ago, she's fine now. I'm sure your dad has a long way to go, and of course your worried about his outcome. The best advise I can give you, is, write down all your questions concerning your dad's health, then take that list to your dad's specialist. That way you won't forget to ask his doctor questions on matters that are worrying you. Don't be afraid to ask questions, doctors expect you to. Let me know how you go, Wazza
Sun, 22/03/2009 - 06:58
#12
Re: Bladder cancer TCC
Hi Guys',
Thanks' for all your support and well wishes. I returned from my urologist with bad news. Nothing that wasn't expected.
I asked my urologist how much time I had. He said 6 months without treatment or 12 months with treatment. I felt sorry for him, to be put in a position of telling someone their terminal, not a good position to be in. He looked very uncomfortable about it.
I'll be more interested in my oncologist opinion on what time I have. I see him on the 30th March, about starting chemotherapy & or radiation. As you all know, cancer has a mind of it's own.
I've been reading my bible, it's helping me a lot mentally. What's the first thing you do when your planning a holiday. You read the brochures on where your going. That's what I'm doing, reading the brochure on my trip. I've written on the side of my bible.
"Dads' Travel Brochure".
Merkel (wife) & I are handling it well. We went out dancing on Friday & Saturday night. We do a lot of dancing, swing, jive, rock'n'roll & ballroom. We won Mr & Mrs Rock'n'Roll a few years back. I play guitar & bass, music gives me a lot of pleasure.
We have a son, daughter and four grandchildren. I think it's harder on the children. Our son said, when I loose my hair he's going to buy me one of those plastic Elvis Presley wigs to go dancing in. Where would we be without humour.
Wazza
Sun, 22/03/2009 - 08:14
#13
Re: Bladder cancer TCC
Hi Wazza,
Thanks for sharing this. You and Merkel are an amazing couple. Please let us know what the oncologist says and please keep us updated with what happens.
Sounds like Friday night was good. I was also dancing that night. Not Rock'n'Roll though. I was doing salsa. 
Best wishes,
Totocol
Sun, 20/06/2010 - 08:32
#14
Re: Bladder cancer TCC
Hi Totocol,
I'm sorry to inform you. Wazza past away last August.
Keep on dancing Totocol. That's what I miss the most,Dancing. Wazza had razor sharp timing in dance, that's what separated us from the rest. How I miss those days & what great memories I have.
Totocol, I go under Merkel on this site,
Regards, Merkel
Sun, 20/06/2010 - 07:07
#15
Re: Bladder cancer TCC
Waxza, If you are willing I would love to talk with you. My partner Mike was just diagnosed with TCC in the kidney/ureter. We are still in shcok and trying to information gather. He has developed a terrible cough and lost a lot of weight and I worry that he may have something on his lung too. Thanks
glendalee
Sun, 20/06/2010 - 08:18
#16
Re: Bladder cancer TCC
Hi Glendalee,
I'm sorry to hear about your partners diagnoses.
I'm Wazza's wife, I go under the name of Merkel on this site. I'm sorry to inform you Wazza past away last August.
If I can help you in anyway with questions you may want answered please contact me under Merkel. I know everything there is to know about Wazza's case. Wazz had his cancer in the same place as your partner.
Regards, Merkel
Hi slipslop, Thanks for sharing your journey and wishing you all the best with the radiotherapy. Bast wishes,Raul