1. < Bladder Cancer
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Just diagnosed with bladder cancer: Feeling overwhelmed

Posted by nano2ndlate @nano2ndlate, May 19 2:49pm

I had blood in urine went to emergency room. After CT Scan they said I had 3 tumors on my bladder largest one 3.1cm. 5 days later Urologist removed tumors. Path report said stage 1 or 2 but needed more testing. I’m scheduled for 2nd surgery June 2, 2026 to see how deep into the bladder wall the cancer has invaded. Does all this sound normal? No one in my family has ever had bladder cancer. I am a 74 year old woman and live alone as I lost my beloved husband 6 years ago. I’ve done a little research on the internet but I find myself feeling so overwhelmed and depressed. Needless to say, I am very scared.

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gemdoc25 | @gemdoc25 | Jun 4 8:11am

From what I have read, your surgeon is somewhat out of touch with GEM/Doce. Admittedly more work is being done with a much wider survey than the original 300 or so, but so far Gem/Doce is at least as good if not better than BCG.

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hummelb99 | @hummelb99 | Jun 4 9:53am
In reply to @michzn "Sadly it sounds all too familiar. I completely understand what you are going through and I..." + (show)
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Sadly it sounds all too familiar. I completely understand what you are going through and I am sorry you are going through it. I had my tumor specimens sequenced through Signatera - the ALTERA test. I also had my speciman sequenced through the VALAR LABS Vesta Test. Both tests revealed that I would be a better candidate for chemo type of treatments vs. immunotherapy. The Vesta test revealed that I am likely very likely for recurrence vs. progression. My diagnosis is High Grade Pappillary, stage T1a. I attempted to focus on getting as much info as possible from this forum and BCAN and asking questions. I also sought a second option after the second TURBT.
I tried to focus on one thing at a time, meaning the CT scan, hoping the cancer had not spread outside the bladder - it had not, next I focused on the surgery - just the surgery not the result and after the surgery I focused on the result. That was the only way that I could get through this depressing process. I wish you well and I am sorry you are going through this .

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@michzn I
I just completed my 6 weeks of chemo and I am scheduled for cat scan and cystoscope in July. My pathology report, evaluated through Vespa test, concluded I would benefit more from chemo than BCG, however also with a recurring possibility, less % than with BCG.
After reading so many very informative messages, I requested a BL cystoscope, since apparently it can discover lesions not visible with regular cystoscope.
Could someone please tell me, when members refer to „surgery“, is that the cystoscope w/scrapping, or different?
I am 82 and also live alone, my children are out of country and on the west coast. I don’t want to interfere in their lives and am presently encouraged by friends who have been very helpful.
Like you, I am very scared but keep assuring myself, medicine has made so many advances recently, that I hopefully will enjoy a few more good years.
Hopefully I replied to the new member of our forum, who is scared to walk this path to recovery.
My thoughts are with you and believe you will get through this.

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dks2500 | @dks2500 | Jun 4 6:02pm
In reply to @kevinpm "@dks2500 I have tolerated BCG well. No complications. Nurses said that some patients who have had..." + (show)
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@dks2500 I have tolerated BCG well. No complications. Nurses said that some patients who have had chemo prior to BCG have discomfort. Vesta biomarkers indicated only a 60 % chance of success. Just before my third scraping I asked the surgeon about the biomarkers. He said not enough research has been completed to justify the biomarkers predictions. That’s why they still do the BCG even if you have the failure biomarkers. They consider it the gold standard. For men it’s about 90 seconds of discomfort. Nothing to fear. Embrace it and see if it works for you.

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@kevinpm thanks so much for sharing, and for your insights. Bust of luck with your journey.

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michzn | @michzn | Jun 7 9:44am
In reply to @lacks "I am a 72-year-old woman who was diagnosed July 2025. This is an overwhelming process and..." + (show)
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I am a 72-year-old woman who was diagnosed July 2025. This is an overwhelming process and some days I am better. I just thinking about one action at a time.
I had the TURBT surgery got a second opinion on both the pathology and treatment protocol from UNC Chapel Hill.
My treatment is GEM/DOCE which are chemotherapy drugs placed directly into the bladder.
I have not had major side effects and mostly I have found. I can just focus on one treatment at a time.
I had six weekly treatments and just finished my eighth of 12 monthly treatments. So far no reoccurrence.
Please reach out if I can be a sounding board for you or a support.

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@lacks This is such promising news, I am happy for you. I am presently in the CCF system contemplating moving to NC. Would you be so kind as to share your care teams information.
I have had 3 TURBT’S in 5 months and now in the no detection for 90 days mode - NIMC, stage T1a. My biomarker test revealed I am not a likely candidate for BCG, but am highly likely for recurrence - high grade papillary - 1 2.8cm tumor removed na d 2 additional lesions that were benign. Many thanks for your post and I wish you continued non detection.

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lacks | @lacks | Jun 7 1:30pm

UNC Chapel Hill has an excellent bladder cancer treatment group.

Advent Urology near Asheville also uses non-BCG therapies

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rtowns | @rtowns | Jun 8 1:50am

I am with you i too was just diagnosed. I can talk with you maybe we can help each other. 74 yr old male in Arizona

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elglide | @elglide | Jun 8 5:28am

I have been cancer free for 15 years. Had stage 3 type 2 bladder cancer 2 resections and probably 12 bcg treatments dont remember exactly. This is definitely not the worst cancer to get even if it seems so at the time. Wish I would have seen the uroligist when I first saw blood would have been easier outcome though.

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hummelb99 | @hummelb99 | Jun 8 7:51am
In reply to @michzn "@lacks This is such promising news, I am happy for you. I am presently in the..." + (show)
Profile picture for michzn @michzn

@lacks This is such promising news, I am happy for you. I am presently in the CCF system contemplating moving to NC. Would you be so kind as to share your care teams information.
I have had 3 TURBT’S in 5 months and now in the no detection for 90 days mode - NIMC, stage T1a. My biomarker test revealed I am not a likely candidate for BCG, but am highly likely for recurrence - high grade papillary - 1 2.8cm tumor removed na d 2 additional lesions that were benign. Many thanks for your post and I wish you continued non detection.

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@michzn
I would be more than happy to share my care team information.
I am at UNC Chapel Hill.
My oncologists are Dr Westerman and Dr Raynor.
Please reach out to me once you have moved to NC.
Wishing you the very best care and procedures.
Anything else I can contribute, please send me a message.

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scott232 | @scott232 | Jun 9 10:21pm

Give it time. The 2 nd surgery is almost always done to make sure cancer has not penetrated wall.
Your urologist will set a course of either immune therapy or chemo. I have had both and tolerable but no fun. This cancer is very prevalent but most of us had never heard of it. Scary but very treatable for most. Good Luck

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Colleen Young, Connect Director | @colleenyoung | Jun 16 7:43pm
In reply to @drw5 "In case you consider having your bladder removed, I'm glad to share my experience and journey..." + (show)
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In case you consider having your bladder removed, I'm glad to share my experience and journey from 4 years ago (79 y/o male). All the best!

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@drw5, welcome. What type of surgery did you have 4 years ago? What do you have for urinary diversion: neobladder, an ileal conduit or a stoma and pouching system? How are you doing?

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