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Treatment Options and Second opinion

2 years 5 months ago - 2 years 5 months ago #51366 by Kas
Thank you Sara Anne and Camille for all the help. It is much appreciated :) A lot has happened since I wrote my first post but, all to say, things have turned for the better :) In short, I went to USC and they wanted to do TURBT themselves (the first one I had was with another surgeon) and they re-diagnosed it as T1 instead. So now I will start BCG treatment next week and see how it goes. We are all hoping and praying that the treatment works. I'm very fortunate that God has given me this opportunity, so now I gotta do my part and see where it takes me (hopefully, back into living a complete, healthy, and cancer-free life).

My best wishes goes out to you both in your journey and it's great that we are able to have this forum to connect and support each other despite an unfortunate circumstance. Take care and stay strong <3

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2 years 5 months ago #51357 by camillewhaley
With your background, I would do a lot of research and think about your options since you are so young and have things that are very important to you. I have a neobladder currently (surgery 6/15) and I am going to have to convert to a different diversion due to the neobladder having a fistula between the vagina/neobladder. I spoke with Dr. Schuckmann and Dr Ginsberg at USC and many have recomended them-- I live on the East coast in CT close to NYC, but I did consider going to USC from here because USC/Keck is world reknowned and some of the best in this medical area have studied there (under Dr. Skinner) and are still there, or they have moved on to new NCI top level BC facilities. If you are not on BCAN, you might want to join that forum and seek out "Lidogal" (her user name)- she had her surgery at USC and would be really great and helpful to connect with if you wanted to speak with a young female who's been in the same boat. She went with a neobladder and is doing quite well. Best of luck to you - just do research and know there are tradeoffs and pluses and minuses to whatever you choose but you will get past it. I was pT3n0mo fully invasive to the muscle and halfway into the fatty lining - scary - and just had my one year clean scan. I had 4 months of neoadjuvant chemotherapy before my RC/Neo/Hysterectomy surgery (Gemcitabine/Cisplatin, every Friday, 3 weeks on, 1 week off for 4 months). I worked full time during it, taking a day off usually the Tuesday after a treatment week. Anyway, I'm looking forward to a new diversion so I can get out of diapers and catheters and leg bags and live my life again. BUT, as long as I'm cancer free I will never ever complain!
The following user(s) said Thank You: Kas

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2 years 7 months ago #51014 by sara.anne
So sorry to hear of your diagnosis. That is a tough one. BUT you are at one of the very best places in the country for treatment and surgery, especially for a woman.

As you may know, neobladders have been problematic for women....,IF I were going to try to have one, I would definitely go to USC.

A second opinion on the question of chemo/surgery or surgery/chemo would be very useful. I understand that the National Cancer Institute offers advice on second opinions in complicated cases. I was told this by
Laurie Cynkin of the Office of Advocacy Relations, NCI.
This email address is being protected from spambots. You need JavaScript enabled to view it.

You might wish to inquire from her as to what the procedure might be.

Good luck to you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: Kas

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2 years 7 months ago - 2 years 7 months ago #51013 by Kas
Hi all! This is my first post but have stopped by a few times to find info, perspective, and comfort. I'm glad to have found this place to do that amidst a very tough situation.

I have been recently DX T2 Stage 2, high grade, invasive and had my tumor removed on March 20. I am a 31 year old female and was referred to USC for treatment. The specialist game me treatment options considering my age, sex, and fertility (my husband and I want to have kids of our own). Option 1: start chemo and then have reconstructive surgery (either Indiana Pouch or Neobladder). Option 2: Reconstructive surgery first, then see if chemo is necessary or not. The urologist said that chemo might lessen the chance of me being fertile, but I need to talk with the medical oncologist and ask the likelihood of this. I am at that stage where I am not sure which decision to make. Do I get chemo done first and then reconstructive surgery but lessen the likelihood of being fertile? Or take my chances of getting the surgery done now and hope that I don't need chemo after? Also, which one should I decide on Indiana Pouch or Neobladder? I am trying really hard to not stress myself too much and have anxiety. I am thinking of getting a second opinion from UCLA but not sure which specialist is best to see me regarding my case. Any perspective, help, or insight would be greatly appreciated!

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