Looking for Advice / Similar Experience

[Rick B]

Hi,

I was diagnosed with superficial BC 1 year ago…Aug 2012 a biopsy discovered I had a low grade non-invasive tumor + carcinoma insitu (cis). I went through 6 weeks of BCG Oct/Nov however Jan 15/2013 another biopsy revealed a non-invasive (favouring low grade) but no cis which was a good thing. I had a choice of cysto follow-up in 3 months or another 6 wks BGC and follow-up after. I chose the 6 wks BCG which was completed Feb/Mar 2013. Early May a cysto indicated no sign of tumor however my urologist call me mid June to advise the cystology showed suspect carcinoma. A second cystology (my suggestion) indicated “inconclusive”. We decided on another biopsy where he found a very small non-invasive tumor (leaning high grade) + cis. I will undergo a 3rd BCG (Aug / Sept 2013) but this time the instillation will contain both BCG + Interferon.

I am nervous as to what’s next. My urologist indicated that if BCG failure results, a bladder removal would be necessary. He said he had done a few (he is 10 yrs as a urologist) and if a neobladder was my choice (I am 62) he would have his partner assist.

I would like any advice on if I should first seek another opinion…any experience or general advice would be helpful. Also, any advice as to where the best cancer centre is (experienced with BC) in Ontario specially, or Canada.

Thank-you.

Rick

[marysue]

I strongly suggest seek a second opinion. Firstly, because the cancer is non-invasive and not conclusive high grade. Although the majority of CIS is. Another doctor may have additional insight to your situation and may have other ideas. Since it isn’t invasive you do have a bit of time leeway to make decisions. Secondly, because an RC whether you choose a neo or illieut conduit is a very big extensive surgery with high risk for infection, complications and a lengthy recovery. You need to learn what is involved and how this will impact your life and be absolutely certain this is your best option before proceeding with it. If you do eventually decide to go for the surgery I suggest that you find a doctor that has done lots of these surgeries. As mentioned it is a lengthy and complicated surgery so you need the best with lots of experience. Our president Jack Moon can help you with contacts if needed. He lives in the Toronto area.

That all being said my suggestions if you do consult a second doctor; Ask what his protocol is if a third BCG treatment fails. Doctors are divided about the effectiveness of Interferon. What are your risks for going invasive? Ask for another biopsy to confirm whether it was high grade or not and if CIS was present. Have him look at your past pathology reports and get his opinion.

BCG can take time to take effect in some people so that is something to ask as well.

I hope this helps. Take care and let us know how it goes.

[Greg]

Hey Rick, thanks for asking such good questions.
Since this is cancer, a second opinion at a major cancer centre is important and would be highly recommended. Major cancer centres with urological oncologists need to be involved, especially when an RC is even in the discussion (RC = radical cystectomy = bladder removal).
Secondly, if your surgeon, however wonderful he is, has only done a few RC operations, definitely get to a major cancer centre where the surgeon has done a few this week! It has been studied in clinical trials that the more surgeries of this type a surgeon has done and a hospital has cared for, the better the outcomes. Since this is one of the biggest, if not the biggest, cancer surgeries, you want someone doing it who has seen it all and can do it all. You never want a surgeon saying “Oops! Never seen that before!”
I had multiple TURBTs (resections of tumours) and six rounds of chemo and immuno therapies and the disease progressed to muscle invasive disease necessitating an RC a couple of years ago (most do not progress, but high grade, as I had, certainly has a greater tendency to do so). I sought a second opinion at a major cancer centre at the advice of folks here on this site. I believe that advice and the subsequent treatment I got saved my life – though sadly not my bladder! So I am a firm believer in second opinions. It is no reflection on the current urologist. It is getting the best medical care available by someone who knows this cancer inside out and who treats it on a daily basis at a major cancer centre. And the after-surgery care is also extremely important and is more likely to occur at a major cancer centre.
Hope that helps.
Keep us posted.
Greg

[stumblegirl14]

Rick, Gregg gave you great advice and I hope you will follow as RC operations are definitely major surgery. Not having travelled this road myself I wish you the best going forward even though these are tough choices. Good luck.
Flo

[Rick B]

Thank-you all very much for the advice and kind/encouraging words.

I will certainly seek a second opinion. I spoke to my family doctor yesterday and he has been helpful…it was his doing that caught this in the early stage. I have no other medical concerns/issues which is favourably in the event this goes to RC.

Also, I’ve decided to seek out a cancer care center in Toronto. I live in Ontario but a couple of hours outside the city. I do not know who the expereinced (for 2nd opinion and bladder removal) urologists are in the City. I read a lot on the internet about top urologists in Toronto but from the patient comments not many talked about bladder cancer or RC…no doubt because there are so many other non-cancer issues to deal with.

Thank you again…will keep in touch.

Rick

[Greg]

Rick:
Not sure where you are from, but there are excellent docs in Toronto. Jack Moon, our President, can help with a referral if you contact him. He can also advise the docs you might want to see. Hamilton and London also have terrific docs if they are closer. Best regards.
Greg

[Rick B]

Thank you Greg. Marysue also mentioned Jack Moon’s name…thank you Marysue. I will most definitely contact him over the next while. I guess I should wait until the 3rd round of BCG is completed and assessed before going too far ahead…what do you think?

I live about 2+ hours east of Toronto in the Belleville area. We are relative new to this location…our intended retirement destination. Prior to that we lived in the Toronto area for 20 yrs…2 of our 3 children and 4 grandkids live in Toronto area hence another good reason to go there for further opinion and/or treatments, if such is the case.

Thanks again…will keep in touch.

[Jack Moon]

Hi Rick

I sent you a private message regarding 2nd opinion. Happy to assist you.
All the best,
Jack

[marysue]

If you tolerate BCG well, I would consider the third round. You have everything to gain (keeping your bladder). You could get this underway while making arrangements to see a second doctor. The BCG will hopefully work the third time round or at the very least buy you time for the second opinion. Best of luck!

[Dawn]

Hi Rick – sorry to hear the news of your diagnosis. I was diagnosed with CIS – high grade on 28 May 2012. What I found helpful when meeting with my urological oncologist in Hamilton was to better understand the statistical data behind the recurrence of CIS over time. This helped me decide the best course of action after finding out that the CIS was still present after 1 round of BGC. (I am 48 years old). You have come to the right place for information – the BCC Team is incredible! Keep asking your great questions! Dawn

[Rick B]

To all,

Just an update to advise that I’ve started the 3rd round of BCG but this time Interferon has been added. The treatments are staggered a bit to fit 6 in within the 6 week period so some are close together (i.e. #1 Aug 2 and #2 Aug 6)…my next one is not until Aug 22nd which I thought to be quite a gap. My uro indicated that skipping a week is ok. He and his staff have been excellent in getting me in for biopsies and treatments swiftly…he seems to be on top of the situation.

I’m handling the BCG treatments well…some burning, frequent voiding and at times with some urgency…that lasts for a day or two. Plus a slight headache for awhile.

In the past during my follow-up visits with him I’ve felt a bit rushed and wished we had more time for questions. So, I warned him this time “:)” that I will be asking questions during the BCG treatments to which he has been very accommodating.

Your advice continues to help and Jack’s offer to assist when I’m ready for the second opinion is tremendous. What’s key now is knowing when to seek the 2nd opinion without disaffecting my uro/patient relationship. He has been very open but generally only when I generate the questions. I told him I was very nervous about RC and he said I should not worry too much about that yet. He said managing the disease varies from patient to patient…sometimes RC is too early on the other hand we don’t want to wait too long. He said we are on this track now (BCG + Interferon) so let’s how this goes.

I will keep in touch…thank-you.

Rick

[Val]

Your situation sounds very similar to mine. I had CIS, two small tumours removed in 2008 – April and August. In April 2010 another CIS tumour presented. The tumour was successfully removed but the doctor still recommended an RC. I got a second opinion from the urologist’s partner, of course he agreed.
Enter BLADDER CANCER CANADA who got me a second opinion with an experienced BC urologist.
I am thrilled to say that 2.5 years later I am still cancer free – no operations, no reoccurrences, just BCG. I still have a healthy bladder and recently got moved to annual visits.
You know, changing to an experienced uro at a major cancer centre saved my bladder. Don’t worry about your relationship with your uro, worry about your health first. It is the most important thing!

[Rick B]

Thank you Val. I am really gald to hear of your sucess with BCG treatments…very encouraging as I look forward to being free of BC.

BCC support group responses have been very very helpful with encouraging words and offers to assist.

I had 2 recurrences early on and have decided to try another (3rd) round of BCG. I will seek out a second opinion from at a recoginzed Cancer Care Cencer.

Thanks again to all.

Rick

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