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Newly Diagnosed at 27!
I have been lurking the forums here for several months, however have just now gotten the courage to tell my story!
All the reading that I have done has been very helpful and has been great to help ease my mind.
Here is my story:
I am a 27 year old male, non-smoker that has just recently been diagnosed with the dreaded bladder cancer!
As you guys can imagine this came as a total shock to myself, my wife, and our families. Each of you guys know the feelings that go along with finding out such a diagnosis.
My wife and I went out for our 2nd Anniversary, but before the fun could begin, I had to make a stop in the restroom to relieve myself of the glass of wine we had just drank. As I urinated, I noticed some serious blood issues that couldn’t be mistaken or ignored! I immediately left the restroom and told my wife what had happened. Being a guy, it worried me, but I didn’t want to make a big deal out of it, being that it was our Anniversary. The wife insisted that we make a trip to the emergency room, where they ran several tests, CT scan, etc., and determined that it was a urinary tract infection. They told me to follow up with a urologist,,,,,,,,,if I wanted to.
Long story short, I went to see the urologist, and he scheduled a poke and peek, where he discovered a tumor in the bladder. Low and behold, pathogy report returns the verdict that no-one expected. “Low Grade, Non-invasive Trasitional Cell Carcinoma of the Bladder”. The tumor was staged as stage 0.
Beyond the initial shock of finding out this information, and the new addition to the family (our first born, beautiful girl), the stress levels were riding high!
It has since been 2 and a 1/2 months since the initial finding, and I am scheduled for another bladder scope in early January. No treatments were given, due to the pathology results, and preventive measures are being taken.
I just wanted to share my experience with others, and hope that some of you guys out there have some encouraging words!
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48 Replies
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[quote author=banxs link=topic=1638.msg15777#msg15777 date=1208536203]
Landon, that was great news. I have written before on your page and I also got a all clear view from my 3 month cysto done this past tuesday.Joe
[/quote]Joe, that is great news. Did the BCG go well, or did you follow through with it?
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Landon, that was great news. I have written before on your page and I also got a all clear view from my 3 month cysto done this past tuesday.
Joe
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I too had a 6 month cystoscopy this morning and it was clear. I have much more discomfort than with the other ones though. But I am off to a ladies retreat on Lake Huron so I’ll deal with it! The sun is out and I’m ready for a couple of days away from it all. We had a devastating senior apartment fire recently in the community in which I work (made national news) and though the trauma didn’t happen to me, being there in the midst of it helping the 200 evacuated seniors has had an emotional affect on me and I am a little weary. I know I seldom post but I am always here listening and learning. There is so much knowledge here and not just about cancer, perhaps just as important, about living. Here’s to rest, relaxation and renewal.
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Good news was brought to me and my family yesterday! Another clean cystoscope. It has now been 6 months since the original tumor was found. I hope and pray daily that the scopes continue to have the outcomes that they have had.
Has anyone else had clear cystos for 6 months to a year and then seen a reocurrence?
I know that this thing can come back at anytime, I just wanted others opinions or experiences. Thanks.
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Ben,
I think you are absolutely nuts still smoking 2 packs of cigarettes a day. I’m not going to go digging for the research, but I believe there have been several studies that show a more negative prognosis for continued tabacco users. The cancer cells are linked to carcinogens from tobacco use being filtered out of the bloodstream by your kidneys and dropped into your bladder… where they sit and mutate your bladder lining.
So, if you are willing to gamble with your bladder or life, I guess it’s up to you! I was a can a day tobacco chewer for 20 years and got my wakeup call at 35YO with an agressive superficial tumor (T1G3)… I quit the day I found out I had cancer and haven’t touched the stuff since (and no desire too). Luckily I have been cancer free over 2 years.
Off my high horse now – I do enjoy a few shots of whiskey every night and I don’t take any Oncovite :)
Chris A.
Diagnosed T1G3 – 3/01/06
37 yo, Seattle, WA
Karen,
That means a lot. I will do the same for you when I say my bedtime prayers tonight. I hope all is well for everyone else out there fighting this disease!
Landon,
I just said a prayer for you.
Wishing you the best possible outcome,
Karen
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
Well…..Here we are again at the 3 month cystoscope!
I will have this scope done in the O.R. since it was only six months ago when the original tumor was discovered and biopsied. If all goes well, and I believe and have faith that it will, this will be 6 months with no recurrance!
I hope that everyone else is doing well.
I will keep you guys updated once Thursday’s scope is over with. Your prayers are appreciated.
[quote author=banxs link=topic=1638.msg12135#msg12135 date=1199134922]
Bill, thanks for the info. I will be starting the BCG first week of Feb. Could you take anything for the burning? How long did it last?Joe
[/quote]The burning, I assume you mean when urinating and if so I was given a doctors script for pain pills which discolored the urine to a orangish color. Pills for about 5 days. The burning lasted 1-2 days. Pain so it made me not want to urinate at all. Of course I drank alot of water for days. Hope this helps – it does not last forever was my thought.
Don
Landon,
I am 55 now and at 52 I had the same,(I never smoked) blood in the urine, went to family doc. first and treated as infection. Months later went back to family doc. – then referred to urologist. I had 3 tumors surgically removed in the hospital. Two weeks later in doctors office cysto found 1 more small tumor which was hidden behind one of the three others…that was removed in office. Total if placed side by side would be approx. 10 cm. WOW Had 18 BCG treatments over 15 months and with NO REOCCURANCE. Path report was non-evasive superficial. I am now on the 6 month plan to visit the doctor for cysto after 3rd year.
I am very comfortable with my doctor – which means alot. My wife did alot of research online which she is great at — make a list of your questions to ask your doctor thats what he is there for /and of course this web site it has been very helpful. I feel very good now and I’m sure you will. Think positive over time will help. The more you understand the whole process in our sitution I do believe will help through this stage, it did for me…
Don
Don
Ben,
I have created a thread for you under Superficial Bladder Cancer called, “shock from cysto.” I am hoping tht you will get your own feedback there.
Hey, Landon!!!
Regards,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Ben,
Thanks for the uplifting story. Over the last few months, especially since my last cysto, I have really not thought much about it. I have begun to realize that there is not much worrying is going to do! I try to not even think about it, and realize that this is something that I am going to have to deal with for forever. Your story is a positive one, and I hope to have much of the same results.
Thanks.
Landon
Ben that is very encouraging. I recently had a 4cm low grade non invasive papillary tumor removed on December 4. Because of the size I have had so far 2 BCG treatments ( No side effects yet). What was the size of your original tumor.
Joe
Landon,
Just want to give you some comfort by telling you my story with Bladder cancer.
I was diagnosed March 2002, few months after I started my new job and did not have time to buy a life insurance through my employer. I was blaming myself for not having life insurance and worrying about my family after I am gone.
The tumor was low grade(4) and non-invasive. The tumor was removed and I had to do Cysto every 3 months for the 1st two years, every six month on 3rd year and once every year after that. I submitted an application for life insurance with the reports on my bladder cancer diagnosis and prognosis. I was accepted as if I did not have any cancer and with regular/normal premium. That means that it is not a fatal disease and I am not a big risk to the insurance company. That was a big relief to me and my family.
During the last 6 years I did not have any diet what so ever. I smoke two packs a day for the last 40 years and drink 2-3 shots of Vodka every day.
All cysto results were clean till the last one at the end of the 6th year. The doctor found a very small growth and removed it all when he was taking a biopsy in clinic and sent it to the lab. The lab report indicates that it was Non-invasive papillary urothelial carcinoma. I have been told that I am not at risk and to be in the safe side my doctor recommended having a Cysto every 6 moths.
I do not think and worry about it at all. The only thing that reminds me of it is the reminder on my calendar for Cysto. I live my life as if I never had this experience and enjoy my life with 2 packs of cigarettes and 2-3 shots of Vodka every day.
I will be 60 years old in March and I feel I have a clean bill of health. I think you would better have same attitude and enjoy your life, family, and specially your kids.
regards,
Ben.
Rollin,
I think that we all have to learn how to deal with this disease, and for quite some time I was just like you. Even still, if I find myself thinking about it, then I automatically think the worst!
My Urologist is very, very positive, and feels as if we can stay on top of this thing and win! He even seems like we may never deal with it again. I know that the statistics show otherwise, but we try to stay as positive as possible. I just had my first 3 month cysto, and everything was clear! My cytology (spelling) report also showed no signs of “floating” cancer cells in the urine during the cystoscope. I am relieved to be three months cancer free!
Keep your head up, and realize that we now have to take everything one day at a time. Shocked as we all were when we were diagnosed, we must all keep a positive attitude. I see others, and have others in my life with other cancers and concerns, and some of these guys have way worse prognosis. I know that things could always be much harder for me and my family. Really, I am blessed.
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