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New to the site, going through treatment
All,
I found this site and wanted to say hello and mention my story.
Last month I was diagnosed with T1/S1 high grade bladder cancer.
I have already gone through the surgery (6/13) to have the tumor removed. I have also gone in, a few weeks later (7/11), to have a second biopsy to test random areas of the bladder and the original site to confirm all of the tumor has been removed. The great news is that the doctors have said to have got it all and none of the follow up biopsys have indicated any cancer cells!
Two days ago (7/26), I started BCG treatment to prevent any further tumors or the cancer from coming back.
Finally, I am hopeful, have a wonderful support group (one that may now includes you all), I plan to beat this, and I hope to develop some additional support and friendships on here as well.
Jason
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14 Replies
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Jason, enjoy the cool weather, here in Missouri it has been in the 100s with 80% humidity. It’s almost unbearable. I have been dealing with my cancer for 6 years now. My doctor and I are very aggressive with it. I have had the BCG and still have had recurrences, so hang in there and don’t get discouraged if it comes back, just get it took care of and stay aggressive and don’t miss any appointments. We are here for you and you are part of the crew now!! :) ;)
T1,NO,MO battling bladder cancer since 2005
Hi, Jason, sounds like you are on the right track with your last post. You will find this group to be helpful as well informative. Welcome to our group!
Jason
Glad you are here. Sorry you are here. At such a young age, it is too bad you had to get this. You sre on the right track and I predict a LOOOOOOOOOOOOOOOOOOOONNNNNGGG Life and this bump in the road will only serve to make you stronger.Besides…….. You are one of US now! The twisted, the strange, the weird, the hopeless optomist, the anti pessimist, and the eternally youthful.
Or is this just me?
Anyway, Welcome and Long live the Survivor!
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
It would be worth asking about.
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Patricia,
I am sure I would have developed diabetes if I continued with my poor diet and lack of exercising.
I am 6 feet tall and I weighed 265lbs. I just took it among myself back in October 2010 to start eating healthy and cutting out carbs, alcohol, minimizing my dairy, and exercising regularly. I am now down to 225lbs, and I was back to my usual routine from a few years ago which was going to the gym twice a week and playing soccer on three different teams.
Mike,
Thanks for the link. I am wondering if the doctors should reduce the dosage amount since the side effects that I am already experiencing are at what seem to be on the higher side.
Jason…just curious as you said you had lost 40 lbs. Were you diabetic and perhaps on the drug ACTO’s?
Jason,
Here is a link to Dr. Lamm’s website. Start here and then search around for other info he has on BCG and why the maintenance doses are so important.
http://www.bcgoncology.com/treatment/bcgInst.html
Summer did show up for you. I’ve been coming to Seattle (well Bellevue) Monday through Thursday or Friday for the past 4 weeks and have two more weeks to go. You had summer two weeks ago for about 4 days. I think Sara Anne is right. Somebody may have stolen it. However, I think I like they 65-70 degree weather better anyway.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Stolen??? :)
It never showed up! :(
Thanks, and I still need to follow up on the dosage and dilusion amount. The other benefit I have is that the wonderful woman in my life now, her step-mother is an ER doctor out of Portland. So she helps us to ask all the right questions. Like going in and storing some swimmers for a later date. :)
Jason, in my opinion, you definitely want to do the maintenance BCG treatments and I am glad that your uro is recommending them. There are all sorts of statistics that show much better outcomes with the maintenance regimen. You are going through the “agony” now, make the most of the effectiveness!!
That being said, it is no secret that the more BCG you get, the more side effects you will have. As your body gets sensitized to the BCG, it reacts more strongly (and after all, we are taking the BCG to stir up the immune system in the bladder to fight off any more cancer.) If you read the material available on BCG, especially Dr. Lamm’s work, you will find that, if side effects become too uncomfortable, the dose of BCG can be reduced significantly and still be effective. By the time I finished my treatments, I was down to 1/3 dose. Some people even go to 1/10 the original dose.
My uro told me that the only reason for the choice of the initial dose is that, when it was first being used, this is the dose that the manufacturer packaged it in! Very scientific!!
You are fortunate to be in Seattle…there are some awesome cancer treatment choices there!..BTW, I am in Portland. Who has stolen our summer?
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Thank you all so far. :) Much appreciated!
Wish I joined before starting treatment, but it seems I now know what to expect. At least for me, the side effects are, fatigue, body aches, headaches, little lightheaded, and of course, bladder discomfort.
Some added info from my post yesterday, I had one urologist do the first diagnosis (ct-scan and cystoscopy) and surgery and a second specialist, a urology oncologist, do the second TURB and second diagnosis. The second doctor is part of the Seattle Cancer Care Alliance, and he is working out of the University of Washington Medical Center (UWMC). So I think I am in good hands with the specialists as well as the people around me including you all. :)
The one interesting fact is that the specialist is recommending the traditional 6 week treatment and then a follow up 3 week treatment every 3 months for the next 3 years. Has anyone else gone through the additional treatments?
The last bit of info… 38 year old male, no history of cancer in the family, and a non-smoker. So lucky me!!! The 1% of the 1%. The benefit I have is my youth, and the fact that in the 8 months prior to my diagnosis I had lost about 40 lbs and that I eat very healthy. So I think I coincidentatlly started out in the right direction. :)
Well, thank you again, and I will keep you all up to date on the progress. :)
Jason
Hi Jason, if you need any information on the BCG treatments and side effects, just let us know. Many of us here have much exeperience.
Joey
Hello Jason… Welcome to the site. You will find a very eclectic, interesting, funny, informed, and supportive bunch of folks here. You’ve had a couple of very scary months for sure.
Glad your treatment is going well.
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Jason,
Welcome to the team!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Jason, welcome to a group you probably didn’t want to join!! I know that you will find a great deal of information here and a lot of people who have “been there, done that!”
It sound as if you are in good hands. And a second TURB (the biopsy procedure) is the way to go. Some urologists don’t do this and it is very common to miss some the first time around. In my case, the second biopsy showed CIS which was a bit scary, but after BCG I am now three years clean!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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