Maintenance treatments or no maintenance treatments ?

[Farm Boy]

Got my first all clear this morning three months following surgery.

At the Bladder cancer meeting in Ottawa, last November, presentations suggested a maintenance program of 3 BCG treatments every 3 months.

I asked my BCG nurse about that and she said my urologist is a little more old school and doesn’t do them. She said the younger doctors often recommend them though.

I asked at my cystoscopy this morning, and my urologist said he really didn’t know much about a maintenance program.

So, feel like I am stuck between a rock and a hard place.

Do they really make a difference?

Should I call and insist or trust the doctor?

I did get an all clear this morning and he had been worried as I had three larger high grade tumours removed. He said we’ll just do cystoscopies every three months for a couple years.

Any thoughts or advice from those of you who have been around longer?

[Jack Moon]

Hi Farm Boy

I can share my experiences, which I did have BCG maintenance treatments and am now 7 years all clear. Although my Uro is in his 60’s, he believes and agrees with the Canadian Urology Association regarding BCG maintenance, although there are different schools of thoughts on this subject.
Here is a link from Dr. Lamm in USA, who has done alot of research on BCG and is thought of as 1 of the leading experts on the subject.
http://www.bcgoncology.com/treatment/bcg.html
Your can also read the study on non muscle invasive bladder cancer regarding BCG maintenance on the Canadian Urologist Association’s website.
All the best,
Jack

[marysue]

I’ll just add my two cents worth. I had several non-invasive high grade tumours when diagnosed in July 2008. I had a TURBT followed by 6 weeks of BCG. My first uro doesn’t always prescribe maintenance BCG. I didn’t know about any such thing back then. I was clear until July 2010 when a single non-invasive high grade tumour was discovered at my cysto. I had a second TURBT followed by a second 6 week round of BCG and then 3 sets of maintenance treatments that were spread out over a year. That made for a total of 21 treatments. I switched uros in the middle of the second round of treatments. My second uro highly recommends maintenance treatments as he is of the opinion that they improve the odds. Jack is right. Docs really vary on their opinion. So in my case I have to ask myself if I had had the maintenance treatments after the first 6 week round would I have avoided the reoccurrence? I’ll never know. I’m going on 4 years clear and feel that all the pain and discomfort was worth it although I wouldn’t have said that at the time.

My suggestion is look at the link that Jack has posted. I have read Dr. Lamm’s work and it does make sense. However the more BCG you do the higher likelihood of more side effects. I had to tolerate a lot of side effects right from the get go but rode it out as I was determined to keep my bladder. That being said it would be worth having a second discussion with your uro about this and even ask for a second opinion. Good luck and keep us posted.

[Rick B]

Hi Farm Boy,

I spoke to my Urologist about the same and we’ve decided the maintenance would be better than not. It will strength the immune system and help the Bladder fight off future agressive cells. I will start my first maintenance round (1 per wk for 3 weeks) 6 months after my last 6 week BCG treatment.

From what I have read and hear, BCG maintenance treatement is a good approach.

Hope this helps.

Rick

[KIOWA]

I really can’t make a call on this except to say that my own experience was such that my body reacted rather violently to BCG so maintenance was not an option for me. I have read a fair amount about it and spoke with my urologist about it for information. The thinking varies greatly. Personally, I think it is best to go with the maintenance than not to.

Ki

[Leigh]

Hi I’m new to all this, I just found out yesterday that I’m in a battle with Urothealial carcinoma in situ. I’m still pretty uncomfortable three weeks after having half of the wall of my bladder scraped away. My urologist has recommended this bladder wash treatment once a week for six weeks. Says it’s showing positive results. Getting the rubber catheter out was brutal, is that the same for everybody?And peeing after that was a nightmare (lemaze, take a deep breath) and is still pretty uncomfortable is this normal?

[Jack Moon]

Hi Leigh

After my 3 Turbts the catheter removal was very uncomfortable also. Urinating after my turbts was extremely uncomfortable due to the burning for a few days. Although during my BCG treatments, I did not experience any pain at all with the removal of the catheter, as jell had been inserter prior to the treatments.
Good luck with your upcoming BCG treatments.
All the best,
Jack

[Rick B]

Hi Leigh,

I experienced much the same as you following the TURBT. Let’s hope you won’t have to go through that again. If you do, like I did, ask to have the “happy drug” turned up a notch. That will help!

I did not find the BCG treatments as severe. As Jack mentioned, they will insert a jell prior to the treatment. My urologist waits a couple of minutes for the jell to kick in so the discomfort is minimal and it takes about 5 minutes from the time the jell is inserted until completed. They should give you a phamplet or instruction sheet to understand what to expect after (i.e. avoid voiding for 2 hrs, ly on your front/back/each side for 15 min each during the first hour, you may experience flu like symptons, etc). You will propably experience some burning when you urinate that could last for 2 to 3 days and even a trace of blood occasionally. Whenever I felt, saw or sensed something different than what the phamplet said, I called/emailed my Uro. Most times it was not a concern, but better be certain than not.

I’m glad you connected with BCC. You will find amazing help on this website. I’ve been a member here for a year and a cancer patient for nearly 2 years. Like you, I had Caricinoma in stiu (CIS) too and was given an “all clear” during my last 2 follow-ups. I see my Uro every 3 months.

If you wish, keep us posted on your progress and never hestitate to ask questions.

Wishing you the very best!

Rick

[marysue]

I too, found the catheter the beast to endure. With BCG your urethra gets irritated from not only the catheter but the drug itself. I found it helpful to ask the nurse to insert gel into the urethra prior to the catheter and then have her grease the cath as well. That made for smoother entry. I also asked for her to give me heads up before removing it and I would take a couple of deep breaths and then exhale as it was being removed. Afterwards, I found sitting on a heating pad helpful as well as a couple of Tylenol. Drinking lots of water helps keep your urine very diluted and less acidic so it doesn’t irritate the urethra as much. Avoiding caffeine while doing BCG helps as well. Being female I found that my genital area got irritated from the BCG. Careful washing and rinsing after each void helps and then I would slather on Lanacaine cream over the whole area. Hope these ideas help. Good luck with the rest.

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