Recently Diagnosed

2 years 11 months ago #60363 by DonaldK
Replied by DonaldK on topic Recently Diagnosed

The fact that you are working with a team is excellent news.

As you mentioned - it's the unknown that scares the hell out of us.

Try your best to work up questions and write them down before your meetings.

There is lots of good info out there on the web as long as you are diligent about the sources.

Things from PubMed (a repository of peer reviewed journal articles) are usually a good bet - reading this type of material can provide knowledge. Remember all scientific article are for information, not cut and dry outcomes.

Again, it is great to have you in the community and we shall be with you in spirit during your journey.

Keep us in the loop and we will do the same.

Happy holidays to you and yours.


Hi Grade T1 CIS

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2 years 11 months ago #60361 by Jean_Pierre51
Replied by Jean_Pierre51 on topic Recently Diagnosed
Thank you very much Mike, DonaldK and Sara Anne.
I appreciate your knowledgable input.
These can be scary times, particularly when the cancer has just been discovered and each medical appointment is 2-3-4 weeks down the road. That's a lot of time to allow worry to fill in the blanks.
I visited with a Chemotherapy Specialist last week and i will have a return visit with the Bladder Cancer Specialist the first week of the new year to plot my course.
I will keep you posted.
Again, thank you.


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2 years 11 months ago - 2 years 11 months ago #60351 by sara.anne
Replied by sara.anne on topic Recently Diagnosed
Jean-Pierre, as you probably know, the "nested variant" form of bladder cancer is relatively rare and is regarded as high grade. I was glad to see that you are seeking a second opinion. You didn't mention where you were going but I hope that it is a major cancer center such as a medical school or National Cancer Institute-designated cancer center.

You need to be seen at a place that sees LOTS of bladder cancer cases and has experience with the "nested variant" form. This is not "garden variety" bladder cancer such as most of us have had. BCG may indeed be the treatment of choice but you need to be sure. A major cancer center will have access to the latest thinking/treatment options.

Please let us know how your journey progresses since others who find themselves with your diagnosis will be looking for information also.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 years 11 months ago - 2 years 11 months ago #60349 by mikequestions
Replied by mikequestions on topic Recently Diagnosed
Jean Pierre51,
I have little to add to Donald's very excellent explanation of the BCG treatment, other than the fact that I'm in a similar situation with a T1 aggressive carcinoma in-situ diagnosis, and I'm receiving my 6th instillation of BCG today. I will echo that it's immunotherapy and not chemo, so it's your immune response that attacks the cancer cells, and not a chemical treatment. I'm not a urologist, but I have a strong feeling that this is your best bet in your fight against this disease, considering your secondary issues.

Listen to your urologist and take notes if you can. I dragged my wife along with me when I received the diagnosis, which was helpful because it's very traumatic to receive this information and can be difficult to retain details you'll need for dealing with this situation.

I'm thinking about you and am happy to share any information I can. Please keep us informed of your progress.


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2 years 11 months ago #60347 by DonaldK
Replied by DonaldK on topic Recently Diagnosed

Welcome to the forum and I am so sorry to hear about your recent diagnosis.

You have come to the right place for input and support, all of us here have been through your situation at one time or another.

I received the same diagnosis in April of 2019, mine started as low-grade, but after the second TURBT and another tumor was found it was changed to high-grade non-muscle invasive urothelial carcinoma with CIS.

BCG s an immunotherapy treatment that has been around since the mid 80's (someone can correct this date if I am wrong). that has excellent success rates. It is not chemo or radiation, it uses the body's own immune system to fight the cancer.

The markings on the bacteria are similar to those on the cancer, so the body 'sees' the bacteria and mounts an immune response. This treatment does not compromise the bodies own immune system, nor does it destroy other cells as it works ( the biggest downfall of chemo and radiation treatments). There is no vomiting, hair loss, malaise, etc. (although some people have various side effects, as I did) - it is a relatively straight forward method of treatment.

The onco doc (actually the onco staff) will place a catheter and instill a small volume of the BCG into your bladder (sometimes they move your body position to ensure it 'washes' the entire bladder interior), you will be asked to hold the BCG (no peeing) for two hours - but if you can't don't worry about that. Afterwards you will be told to put around 2 cups of bleach into the toilet and allow the urine to sit for about 15 minutes to kill off any BCG before you flush (we don't want live BCG in the water reclamation system). Usually, you are also asked to bleach your urine for the next 4-6 hours (approximately same amount of bleach to the amount of urine).

The initiation phase will consist of weekly instillations for 6 weeks (typical) after which you will enter into the 'maintenance' phase where you should receive weekly installations for 3 weeks. The maintenance phase will follow a schedule at specific times (3 mos, 6 mos, 9 mos, etc.) getting further and further apart as you progress.

You will have cystoscopies at regular intervals so the doc can visualize the interior of your bladder (they will also collect cells to send to cytology - this will just be liquid from inside the bladder through the scope that has been inserted, so no real extra work or anything). The bladder will show signs of inflammation, redness, etc. - this will be normal because of the immune response. The cytology usually comes back within a couple days stating whether cancer cells are present or not.

There will probably be discomfort from the treatment (everyone is different), there may be urgency to pee, malaise, aches, bladder spasms, and tiredness. All of these are usually pretty manageable - especially by keeping the onco doc and the onco staff informed of any issues you are having. Spasms can be treated with OTC or prescription meds (Oxybutynin and Myrbetriq are two common meds for bladder spasms).

I hope this is not too much information at one sitting, my apologies if it is - you can digest it slowly.

Remember we are here for you and to help you go through this difficult time - at least in spirit.

Use whatever resource you have available to their fullest, ask for help and understanding from those around you and the group.

Keep us in the loop as you progress - both the GOOD and the BAD - we want to know.

I have faith you will get through this and come out the other side with dignity and grace.

Let us know if you have questions and concerns and we will all provide our experience, strength, and hope.

Try to have a happy holiday season as best you can.


Hi Grade T1 CIS

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2 years 11 months ago - 2 years 11 months ago #60346 by Jean_Pierre51
Recently Diagnosed was created by Jean_Pierre51
I am in dire need of information. I am male and 69.
I was diagnosed with badder cancer, nested variant, about one and a half months ago. Seems longer since treatment is still on square one.
It hadn't reached the muscle yet, much less the lymph nodes, although I am told by my bladder doctors that this type of high-grade T1 urothelial cell carcinoma can spread far and wide quickly.
I talked to a Cancer Doctor a few days ago who thought that BCG was the way to start.
One mitigating circumstance here....I have COPD, pulmonary disease, which makes Chemotherapy risky and removal of the bladder more risky, or so I am told.
I have an appointment with another specialist in early January.
Any advice or information to share?

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