Hello, Confused about treatment? IS there a guidline of what to expect somwhere that Ontario Dr’s should follow?

[gilron]

Hello All,

Feb 24th 2015, I had 3 tumours removed, the largest was 1.5cm and the pathology report cam back as taHG or High Grade papillary urothelial Carcinoma, non-invasive. But the dr said that I should not worry that he cured me. He got all of it out.

Of course he did not give me any more info which now I have done some research and there are many sites like this one that have documentation that advises he should follow a high risk approach in treating high grade non invasive BC.

3 months received Cysto, all clear, 6 months received cysto all clear. dr says he will see my in another 6 months.

March 2016, cysto, 7 small tumours were removed, pathology report came back low grade

June 2016 cysto, 3 small tumors were fulgurated without sending biopsy to pathology, dr says he is positive they are low grade not to worry and he will see me in another 3 months.

Following some other posts at other BC support group sites, one person recommended that I get urine test strips and test for blood in the urine since this would be a good indicator that maybe a tumour had come back. So I did and after the cysto or TURBT or fulguration there was blood for about 2-3 weeks but it cleared up. Now at the beginning of August I have blood showing on the test strips, even though, my urine is not pink, the strip is indicating now that blood is 4+ca,250Ery/ul . Spoke to my urologist about this and he said if you don’t see the blood not to worry and he will see me at my next cysto on sept 27th.

Here are a few questions?
Should my urologist not follow the Dr Lamm protocol when it comes to High grade non-invasive BC?
Is it normal for recurrence to occur that quick between each cystoscopy?
Is it normal for urologist to simply fulgurate (burn) the tumours and not send any sample out to pathology because he “knows” they are low grade by the appearance?
Should I demand that he refer me to an oncologist so that I can get some type of treatment either Mytomycin or BCG started?

[Dunc]

You seem somewhat unsure about your Doc. I believe you should see another urologist for a second opinion. But I think everyone should.

[Jack Moon]

Hi Gilron

Go to our home page under facing bladder cancer.
Download the brochure for non-muscle invasive bladder cancer.
http://forum.bladdercancercanada.org/en/facing-bladder-cancer/guidebook
The same information guidelines can be found on the Canadian Urologist Association’s website, but is a little technical with many medical terms.
I recommend you get a 2nd opinion at a major cancer centre with a Urologist/Oncologist.
Usually patients diagnosed initially with non-muscle invasive bladder cancer high grade are given BCG treatments.
Usually you would have a cysto every 3 months for 2 years and if all clear then moved to 6 months.
A doctor can not tell if a tumour is high grade or low grade unless a biopsy is sent to the lab.
If you would like assistance in obtaining a 2nd opinion I can assist you if you wish.
Telephone: 905-691-6500
Jack Moon
Co-founder
Bladder Cancer Canada

[DDep]

Hello gilron,

Welcome to the site that “no-one wishes to belong to”. It is certainly troubling to be diagnosed with Bladder Cancer.

I sense that you are troubled with the recurrence and treatment of your Bladder Cancer case. You ask if there is a “guideline” Medical Doctors should follow.

I would start with trusting my medical team. They know my medical history and they know what is best for treating me. Example. What medications I can take, at what dosage levels and over what period of time. With all due respect, I do not believe anyone can understand your medical history or your health and what treatment is best, based on a post to this forum.

I also think it is good to be informed in order to have an intelligent discussion with my medical team. I think using a reference as a basis for discussion helps me understand what my Doctor(s) are thinking and makes me comfortable with treatment.

The “Guideline” I would use is: CUA (Canadian Urological Association) guidelines on the management of non-muscle invasive bladder cancer, July 30, 2015. (Ref. https://www.cua.org/themes/web/assets/files/nmibc_guideline_for_mem_rev_09_06_15.pdf )

Looking at Page 2 of the CUA Guidelines, Prognostic factors for recurrence and progression of Non-Muscle Invasive Bladder Cancer (NMIBC) can be based on the European Organization for Research and Treatment of Cancer (EORTC) risk tables or EORTC calculator ( http://www.eortc.be/tools/bladdercalculator ).
Stratification into what level of risk you are at can be done by using the EORTC tables in this site: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3263923/pdf/10.1177_1756287211431976.pdf .
Using the following steps:
1) On page 19, look at Table 3. Add up your total “Recurrence” and “Progression” Scores.
For example, Your initial “score” on Feb 24th 2015 would have been based on the 3 tumours, the largest was 1.5cm and the pathology report cam back as TaHG. So… 3 tumors: Recurrence 3, Progression 3. and TaHG … or TaG3: Recurrence 2, Progression 5. TOTAL Recurrence 5, TOTAL Progression 8.
N.B. I will leave it to you to work out your current “score”.
2) Now go to page 20, Tables 4 and 5. and match the example scores to the tables. With a Recurrence score of 5 that would have (in February 2015) been and Intermediate Recurrence Risk. A Progression score of 8 (at that time) would have meant a High Risk of Progression. As I say, that was applicable in February 2015.

Now on to treatment. It could be Chemotherapy or Immunotherapy. Using BCG Immunotherapy as an example,
In accordance with Page 12 of the CUA Guidelines:
” – BCG induction with maintenance therapy is the standard of care for high-risk NMIBC (Grade A recommendation)
– Although we recommend intravesical chemotherapy, patients with intermediate-risk NMIBC may also be treated with intravesical induction course with BCG followed by maintenance as an alternative option (Grade B recommendation) ”

Only you and your medical team know what is best for you. They are aware of you general health. The example above should only be used as a basis for discussion and is only on paper. Medically treating people is more complex than the stoic writings on documents.

Answers to your specific questions:

1) Should my urologist not follow the Dr Lamm protocol when it comes to High grade non-invasive BC?
Ans.: It depends on the evaluation of your medical team, your health, your current risk level – I would have an informed discussion with your Urologist – perhaps using the EORTC and CUA References above as a starting point. On the surface of it, based on above, (high risk) you should be treated with BCG in accordance with the South West Oncology Group (SWOG), Dr. Lamm protocol. Again, your medical team knows your situation best.

2) Is it normal for recurrence to occur that quick between each cystoscopy?
Ans.: Bladder Cancer has a high rate of recurrence relative to other cancers. Ask your Urologist whether your situation is normal for such a recurrence rate. BTW, The EORTC calculator referenced above will give you an idea of the recurrence rate (FYI multiply the number by 100 to get the percentage chance of recurrence)

3) Is it normal for urologist to simply fulgurate (burn) the tumours and not send any sample out to pathology because he “knows” they are low grade by the appearance?
Ans.: Your Urologist is the expert and has probably seen many tumors. “The visual judgement of urologists in superficial bladder tumors is very good.” (Ref. http://blcwebcafe.org/content/view/103/113/lang,english/ , Bullet 5 in “Guidelines” at end of document). The Urologist is also best trained to treat what he sees. Consider this … If the tumors were very small, and they looked low grade, the tissue could have been “burned” by the cauterization process used during a TURBT. The samples then, may not be good enough for pathology. So, fulgurating the tumors, if they were very small, would give the same result. On the other hand, if they were large enough, usually they would be TURBT’ed and sent to Pathology.

4) Should I demand that he refer me to an oncologist so that I can get some type of treatment either Mytomycin or BCG started?
Ans.: Have an informed discussion with your Urologist/medical team (perhaps using the References above) to understand what may be the best treatment for your case. Again on the surface of it, it looks like you should be getting some type of intravesical treatment. If you continue to feel unsatisfied, take Jack Moon up on his offer.

Finally, just curious, in accordance with CUA Guidelines, page 10,
” – Immediate postoperative instillation of a chemotherapeutic agent is recommended for all patients with NMIBC after TURBT (Grade B recommendation)”
Did you get a post-TURBT “wash” of Mitomycin or doxorubicin or epirubicin?

I trust this information will help you with any further discussion(s).

God Bless

DDep

[marysue]

Hi Gilron!

Welcome to Bladder Cancer Canada. I too, had high grade uro carcinoma in 2008 and 2010. I had BCG after both tumour removals and have been clear since 2010.

Personally, I agree with what Jack says, seek a second opinion. The fact that you’ve had two reoccurrences and your uro doesn’t seem too concerned kind of bugs me. I believe all tumours should be sent to pathology for analysis. That is the pathologist’s job, to determine the stage and grade of a cancer. Since bladder cancer has a really high reoccurrence rate we always need to be one step ahead of it.

A second opinion would confirm or change the first doctor’s diagnosis and also give you an idea if BCG should be given in your case. High grade cancer has a higher risk of going muscle invasive (invading the bladder wall muscle) should it keep reoccurring so you want to reduce that risk as much as possible. BCG treatments can help with that so I think getting a second opinion would help with that decision.

If you decide to go the second opinion route and need help, contact Jack. He has a lot of contacts and can give you names of doctors. It is your body and you have the right as a patient to be able to be sure of getting all the correct information to be able to determine what is best for you and go for it. All the best and let us know how it goes. (((((HUGS)))))

[gilron]

Hello Everyone,

Thank you for your replies.

Answer to DDep’s question is no, I did not receive any type of postoperative instillation of a chemotherapeutic agent throughout my history so-far.

The information and advice from Jack and DDep is the best starting point I have had. I believe the biggest problem is that my urologist lacks communication skills. In his office he has many brochures and literature on Prostate cancer, kidney stones, but I never saw one brochure on Bladder cancer.

As you can see once he told me I had high grade superficial bladder cancer on my first office visit with him, he said he removed it completely and said I was most likely cured.

The lack of information given to me by him has sent me on a hunt to find out more about bc. (hence how I found this site, and tons of other information). We are thought to respect our Doctors recommendations and this is why it has taken so long for me to reach out. My family GP thought is was a good idea to become a member of a support group like this web site.

I believe the biggest shock to me, is that I am now the 3rd person in my paternal family to be diagnosed with Bladder cancer. My father’s sister was 52 when she passed, my first cousin passed at the age of 50 last summer (6 months after I was diagnosed and only 14 months after she was diagnosed) And here I am now at 47. The key difference perhaps is that I was lucky and found the growth early by accident from a ct scan while investigating another issue. Up until then, the only symptom I had was the odd urinary infection (so I thought and) and it usually went away on its own after a week or so.

I will stop rambling on now and follow up with my urologist. Being in Sudbury, I have limited possibilities of reputable urologists. I am not sure we have a Urologist/Oncologist at the Northeastern Ontario Cancer Centre.

I will recommend to him that he get in touch with this site so he can get information to hand out to his patients and perhaps, this may guide him in the right direction with his patient skills….

Regards,
Gilron

[Val]

Hello Gilron

Please listen to Jack & DDep, they have given you great information.

I am from Northern Ontario myself, Sault Ste. Marie, but spent quite a bit of time visiting friends in Sudbury. I’ve lived in Calgary for over 30 years. When I was unsure about my original urologist I got a second opinion of a doctor in Toronto who recommended more BCG treatments instead of bladder removal (the original Calgary doc only gave 6 and didn’t follow up with maintenance BCG.) I flew to Toronto for my checkups for 5 years, although I got my BCG treatments in Calgary. After 5 years of cancer-free years I am now seeing a new Calgary urologist whom I trust.

Bottom line, don’t let your geography define you. Get a second opinion from a major centre, stand up for your health.

Valerie

[Author]

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