Looking Ahead

13 years 10 months ago #31894 by Joey
Replied by Joey on topic Looking Ahead
Young gun, I was dx in Dec 08 at age 51 with low grade TCC. at my 4 month follow up and after 6 weeks of BCG, two tests one the cytology and the other a Fish were negative and a review of my biopsy by 3 pathologists (two review and one was a supervisor at the lab) said I did not have a recurrence, a second opinion found focal CIS. Had a larger biopsy taken two weeks later and the opinions were split again. One pathologist said no sign of carcinoma, a benign sample. I have since then had 9 more BCG treatments and have not had a recurrence of the CIS and the last scope was advised the bladder looked good. If I am clear on my next scope on 06/10/10 then I will go to 6 month appts. I will then have 3 more BCG treatments in June. It is my understanding that BCG is effective for CIS.Even though I have had side effects, chills, fatigue, frequency, burning, some bleeding, temperature and even a rash it has been doable and has resolved within 24-26 hours.
You will be fine.
Joey

Please Log in or Create an account to join the conversation.

13 years 10 months ago #31892 by Patricia
Replied by Patricia on topic Looking Ahead
Young Gun......question..are you in the military? Where are you located?
pat

Please Log in or Create an account to join the conversation.

13 years 10 months ago #31884 by Melodie
Replied by Melodie on topic Looking Ahead
Young Gun,

I expected you to say you were in your 30's, not early 20. Yikes! I have a son age 22 who is a bird hunter so your post made me think of him. Sorry you have to deal with something like this at such a young age but given you are so young, you have the factor of age and strength in your favor. I am adding you to my daily prayer list, that you will find all the strength, information and the best medical care available to you during this challenging time of your life. I'm sure more of the guys will be on to post and share their experiences.

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

Please Log in or Create an account to join the conversation.

13 years 10 months ago #31869 by mmc
Replied by mmc on topic Looking Ahead
Young Gun,

Wow! Bladder cancer and prostate issues at 20. That certainly is young but not unheard of.

The symptoms you describe sound like the BCG is doing what it is supposed to do, which is cause an immune response in the bladder so it will kill off cancer cells.

CIS is serious stuff so you will likely be dealing with this for the rest of your life as you will need maintenance BCG on a regular basis and cystoscope exams to keep an eye on things.

The time for the burning to go away varies for people but it should go away.
You might ask your uro if he can prescribe something for that. Sometimes Peridium works but it makes your urine bright orange. It does help with burning though.

You should also consider a follow up second opinion at a major bladder cancer hospital. Highly recommended.

Why did you need a TURP? Did you have urinary retention issues (frequency. Urgency)?

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...

Please Log in or Create an account to join the conversation.

13 years 10 months ago #31868 by Young Gun
Looking Ahead was created by Young Gun
I've been told over and over again how unusual my case is, so I don't expect any perfect line up with me personally, but I'm guessing that people will go through treatments relatively similarly, and people who are further ahead in the process certainly know a lot more than I do.

I first found out that I had bladder cancer in January. I then had to have 2 different biopsies to get the staging, since the first time was inconclusive. Eventually, I got the final diagnosis of superficial CIS, which I think is about the best that I could hope for.

The only thing that makes my case different than most is that I'm a 20 year old college student. I've never had any sort of medical issues before now except for a couple broken bones from falling and sports and the like. I don't smoke, and don't seem to do anything that is listed as risk factors, so I'm not really sure how it happened. But it did, so I'm basically in the same boat as anyone else with the same diagnosis, only I have to think about hopefully the next 60+ years of my life.

I was started on weekly BCG treatments, and have now completed 4 of them. My schedule is to do 6, take 3 weeks off, do 3 more, then wait a month or so to do a biopsy. Symptoms so far haven't been too bad; the last 2 times I've had a little pain, and some blood and pieces of lining or whatever have come out, but I assume this is to be expected. What I really am most concerned about is the future.

From what I understand, BCG has a very good success rate on superficial CIS. But is this going to haunt me for the rest of my life? I feel like there's a whole lot of time left in my life for this to cause some sort of problem in the end. How likely am I to have to deal with this again after this treatment, and is it still entirely possible even if I manage to go through 5+ years of check ups? I'm used to being the strong, reliable one, and I'll need to be for a long time still, so it could very easily be terrible timing for this to come back on me later on.

Finally, this is a pretty general question, but how long should I expect urination pain or other symptoms to last? In my second biopsy, I also got a TURP done. Ever since then, there's been some pain in urination, though it is decreasing significantly (with small increases the day of BCG treatment), so I think that the majority of my pain is still from the recovering surgery sites more than the cancer itself. Anyone know how long until I can expect this to be gone completely?

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne