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Dad's Cancer was Up-staged and NOW really scared

1 month 4 weeks ago #57642 by Neelloo2626
Lee I’m praying for you. You are in good hands too and you and my dad will both live long happy fulfilling lives. Let’s support each other and get through this!

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1 month 4 weeks ago #57641 by NelsJenn
Dear Neelloo2626,

I have heard that Stanford is excellent.

My urologist doesn't have the luxury of being able to use blue light cystoscopy to make sure all the cancer cells have been taken care of. He told me that he will do his best, but since my cancer is widely spread throughout the bladder he could have missed some of the cancer cells.

With that said, I believe your father is in good hands. I will also keep my fingers cross for your father.

I am planning to have my second TURBT at UCSF, where blue light is utilized. I will hope the doctor's there will tell me the same thing about getting all the cancer cells out with the help of blue light technology.

You are amazing, Lee

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2 months 2 hours ago #57632 by Neelloo2626
Lee, keeping my fingers crossed for you. We are going to Stanford tomorrow. My father's doctor said after the second TURBT he got all the cancer out- using blue light cystoscopy- he said he removed all the spots that were "red" until nothing appeared via blue light. Now I am worried that doctor did not catch everything. We will see tomorrow.

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2 months 2 hours ago #57631 by NelsJenn
Dear Neelloo2626,

I have recently been diagnosed as a T1, High Grade, bladder cancer patient after my TURBT. I am sorry to hear about your dad's diagnosis. I believe it's similar to my diagnosis.

Sara Anne is right on point. She said to me that my diagnosis was not the best, but it was also not the worst. The good thing was none of my cancer invaded the muscle layer and the cancer seems to be superficial. The bad thing was that the cancer was extensive throughout my bladder.

I am now looking at another TURBT procedure and a series of BCG intravesical Immunotherapies throughout a couple of years. These procedures will hopefully eradicate the cancer cells.

The only other option would be to have a R/C, I believe.

At first when I found out about this bladder cancer thing I was stunned and afraid. I am still afraid. But I am trying my best to see the positive side of my situation. The mitomycin-C and BCG treatments will give me an opportunity eradicate the bladdder cancer, as well as the R/C if it comes to that.

I would do the treatments two times over and do a back flip if it gives me one more day with my lovely wife.

My best, Lee

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2 months 6 days ago #57588 by sara.anne
No, you should be concerned but not terrified. The cancer is still confined to the bladder and the biopsy confirms that it is indeed high grade. It has started to grow into the next layer of the bladder but does not appear to have spread into the muscle or beyond. The good news is that it should still be responsive to BCG. The doctor will be monitoring him closely for the next few years to be sure to catch any return or spread early.

You can best help your father and yourself by remaining positive and optimistic and encouraging. It sounds like he has a good medical team

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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2 months 6 days ago #57587 by Neelloo2626
So my dad's pathology:

Microscopic Description:
Specimen A.: Sections demonstrate involvement by high grade papillary urothelial carcinoma with
lamina propria invasion. Muscularis propria is identified and uninvolved by tumor. Background
biopsy changes are present.

Specimen B.: Sections demonstrate involvement by high grade papillary urothelial carcinoma with
lamina propria invasion. Additionally, some fragments show a flat layer of atypical urothelial
cells without definite fibrovascular cores.

which may be consistent with adjacent urothelial carcinoma in situ (due to specimen proximity to
bladder tumor, an
adjacent "shoulder" lesion cannot be definitively excluded). Muscularis propria is identified and
uninvolved by tumor Background biopsy site changes are present.

Representative slides have been reviewed in the daily intradepartmental consensus conference.

Synoptic Comment:
A. Right posterior bladder wall: SPECIMEN
Procedure:
TUMOR
Tumor Site: Histologic Type: Histologic Grade: Tumor Extension:
Muscularis Propria Presence: Lymphovascular Invasion: COMMENT
pT1NxMx

Transurethral resection of bladder (TURBT)

right posterior wall
Papillary urothelial carcinoma, invasive High-grade
Tumor invades lamina propria (subepithelialconnective tissue)
Muscularis propria (detrusor muscle) present Not identified

So what does this mean- the doctor still says BCG? I am loosing hope. I am terrified.

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