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Hello all. My husband Mick (age 61) got his path report back today. He has been diagnosed with a rare bladder cancer called carcinosarcoma. [strong]Does anyone on the forum have any insight on treatment for rare cancers? [/strong]We are scheduled to speak to his surgeon at Johns Hopkins (in the states) on Tuesday morning.
All we know is that Mick will soon have surgery to remove his bladder and prostrate. Hopkins is not suggesting chemo or radiation. We are researching now on the neobladder or Indiana pouch…so much to learn so quickly.
Like many, he doesn’t profile for cancer. He’s physically fit, eats a nutrient dense diet, avoids trans fats like the plague, never smoked, didn’t work with chemicals, limits alcohol, and has no family history of bladder cancer. We are still digesting the news of him having this aggressive form of bladder cancer.
We vow to remain positive and optimistic and are fortunate to be surrounded by our loving kids, family, and friends. This rare form is such very tough news . . .
We wish all of you the best of success in your treatment. And insights into carcinosarcoma is much appreciated. 11 short days ago we were planning a vacation to Costa Rica… life is so bittersweet at times.
Warm regards,Jannie
Hi Jannie:
On behalf of all of us at Bladder Cancer Canada, welcome to our site although I’m sure that you wish you didn’t have to be here. I didn’t have a rare form but have had my journey with bladder cancer just the same. Hang in there. I’m sure that someone will reply at some point. Getting as much info as you can and getting the questions lined up to ask the doc is crucial right now. I know that your head must be in a spin, mine was. The key thing I suggest is when deciding on which diversion to go for is to ask about the pros and cons of each as it pertains to his situation. One option is sometimes better and the doctor is the best guidance on this. The type and location of the cancer is one of many deciding factors. Many folks here have had experience with the three main options; the outside pouch referred to as an IC here on the site short for ileuil conduit, IP or Indiana Pouch, and lastly the Neo or neobladder. Let us know when the surgery will take place and don’t hesitate to post questions. As for the exact cause of bladder cancer, it can be a puzzle when no obvious cause is present. That is what some of the research is looking into; to see what makes cancer cells develop in some people and not in others. Best wishes and stay in touch.
Sorry Mick has been diagnosed with this rare form of bladder cancer. I have no experience with this type of cancer. I have many friends in USA and many of them praise John Hopkins for their expertise in dealing with bladder cancer. The key is Mick is at the right hospital who will have experience in dealing with rare bladder cancer.
I you wish you both all the best,
JackHi MarySue and Jack. Thanks for responding. I much appreciate you taking the time. Both Mick and I are remaining amazingly calm (denial?) because we know lots of people are praying for us. We decided to take the upbeat route for now (if you gotta be blue- be a bright blue!) and look to find good bit of joy in each day. In addition to the Western medicine, Mick will be getting some REIKI or acupuncture and we are opting for a holistic and organic diet (although we were pretty close to that already). Like everyone, we don’t know what the future holds. One friend gave us some really good advice. She is a researcher and said we should NOT look at the studies and survival rates in isolation. Sadly, the prognosis for this rare cancer Mick has is quite on the dreary side. But someone has to beat the odds. And so, I hope that each one of us on the forum fares well. I would love it is my wonderful husband was an “odds beater.” For now- we are suiting up in our best armor. We trust the surgeon- he’s very good. Co-chair of the urology department and on the ball.
I found a combo of “western” medicine in the form of a TURBT and followup BCG immunotherapy and later acupuncture, yoga, exercise and revised diet is what worked for me. I have had urolethial carcinoma twice (the tumours that look like little mushrooms or pieces of cauliflower – it is the most common kind of BC and TURBTS followed by BCG is the usual treatment route). Each of us will find our own path in this journey. If you embark on any form of alternative/complimentary health care I suggest that you make sure that you deal with practitioners that are well trained and are aware of the cancer that Mick is dealing with. I called it “fighting back with what I know”. If you do what you can to strengthen your body then I truly believe that you give yourself a greater chance of beating the disease. All the best and stay in touch.
Jannie: We are all here because we trusted our treatment teams.We all made our best decision with the info we were given. The uncertainty for me was the toughest thing to deal with. Reach for faith, Believe in HOPE ! Know you are LOVED
May the breath of Heaven surround you in this time of need.I have no experience with this type of bladder cancer. What I can tell you is my own experience with my bladder cancer.
Late 2013, I was diagnosed with stage 3, aggressive and invasive bladder cancer. I took 4 months of Chemo prior to surgery. Surgery was done 26 May 2014. Bladder, seminal vesticle, 21 lymph nodes and the prostate were removed.
I have fully recovered. I took 5 weeks of 5 times a week of radiation. The last SCAN was good with no tumors detected.
It was quite a journey and quite an emotional roller coaster. I am 73 years old.
Any questions prior to your surgery? Feel free to ask.
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