Am I stupid to keep pushing for BCG with T1HG?

[Sara]

Hi All.

I am 37. I was diagnosed with T1HG papiliary carcinoma in December 2021. Multiple tumors. Had an incomplete resection within a few days. Results came back as above, with laminar propria invasion, as well as “sarcomotoid features” found (this part freaked my Urologist out and he recommended RC straight away) I asked if we could try another turbt and then bcg first.

Had another turbt 4 weeks later. Results came back with NO muscle invasive, NO laminar propria invasion.  No further sarcomotoid features found. However there was more HG papilliary found. Doc said we need to have a clear histology before beginning BCG. So we scheduled another turbt in 4 weeks. And so it went on.

I have now had 4 turbts. The last one came back with 2 of the biopsies also containing CIS. (Still no more sarcomatoid or lamina p. or muscle invasion) The doc says its time to give up and do RC.

I then found this site, and have spent hours and hours reading all of your stories and have found so many people who did bcg after the 2nd turbt without getting a clear result first. In fact it seems common practice in the case of CIS! Why does my urologist insist on doing turbts until clear and not just start BCG?

I know that some don’t respond to bcg but isn’t it worth trying first? None of my results since the first turbt have had any T1, all T0.

I know there is a risk of progression during bcg, but I feel like we’ve now wasted 2  months doing extra turbts when we could have tried bcg and seen if it was effective?

One factor that is probably clouding my judgement is that I really want to have a 2nd child and that makes me more willing to take a risk delaying RC in the hope that I’ll be in the 60% that bcg is very effective.

Changed my diet and lifestyle (which wasn’t terrible) after diagnosis. For the last month I have been doing keto, very clean, mostly raw, hardly any meat or dairy, as well as high dose full extract cannabis oil (just in case it helps).

Apologies for such a long post.

Should I give up and do RC, or ask for a 6 week course of BCG first and then RC if it doesn’t clear?

 

 

 

[Nightingale]

Hello Sara,

I want to begin by first stating that we are not medical doctors.  Most of us who participate in the forum are patients who are sharing our own experiences.  I am not sure where you are located, but it’s worth asking your doctor again for his rationale.  That said, I found this statement in the National Library of Medicine, and it supports your doctors suggestion.  I know you’ve indicated that after the additional testing, it was found that the cancer is non-muscle invasive, which is better.

Context: High-grade T1 (T1HG) bladder cancer (BCa) has a very high likelihood of disease recurrence and progression to muscle invasion. Radical cystectomy is considered the best chance at cure, albeit with a high risk of morbidity, and is overtreatment for some patients. Treatment with bacillus Calmette-Guerin (BCG) allows bladder preservation but may risk disease progression.

Only your doctor would have your family history along with other health information to make a recommendation.  Also, you may want to consider getting a second opinion from the medical people in your area.  Especially given the new findings.  Here in Ontario, we will in some cases seek a second opinion from another medical doctor before making a decision.

Again, I want to emphasise that we are not medical doctors and therefore don’t want to even attempt at providing a recommendation. I hope this helps.

My best,

[marysue]

Hi Sara:

Welcome to Bladder Cancer Canada but sorry that you have need of us.  I second what Nightingale has posted.  We are not medical doctors so we cannot specifically advise as to which route is best for you to take.  I agree with Nightingale that seeking a second opinion would probably be most helpful especially with weighing the pros and cons of each treatment option.

While those extra TURBTs were not convenient, they did eliminate the extra cancer even if it is only temporary.  If I’m reading your post correctly, you have had more than one type of bladder cancer plus being Stage 1 the first time.  That makes your situation a little more complicated than if you had only one type.

As a mother of 4, I understand your desire to have another child.  However, I strongly recommend that if you have not already done so, include this topic in any conversations that you have with your medical team.  If it is determined that you can proceed with BCG treatments, you will need to find out the risks of BCG and pregnancy and/or breastfeeding if that is an option you are considering.

A major consideration to think about and maybe get some additional advice from an OB/GYN as well; and it would be around how to handle the recurrence risk should you be pregnant at time.

At 37, I know that your biological clock is definitely ticking but no matter what, you need to put you and your health first.  You have a child already and need to keep him/her in the picture regarding any decisions. Right now, you have no way of knowing when exactly you will be in the clear.

I, in no way am suggesting that you don’t have any more kids.  I’m just recommending that you put yourself and your health first and get as much advice as you possibly can on which option could be best for your future survival.

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