Husband newly diagnosed

11 years 3 months ago - 11 years 3 months ago #30910 by nancikay
Husband newly diagnosed was created by nancikay
Hello there,

My husband was diagnosed a couple of weeks ago with what the doctor believes to be superficial bladder cancer. He has a 1 cm tumor in his bladder per the CT Urogram, and had a cystoscopy to confirm and have a look. Tomorrow he'll have TUR to remove the tumor and will have one treatment of mitomycin-C in the OR.

After that, they said he'll have repeat cystos every 3 months for 2 years, then every 6 months and so on. He used to smoke and also worked his whole life in rubber manufacturing which I hear puts one at higher risk.

In reading the forum I don't see a lot of people talking about mitomycin. Is it not used very frequently? What kind of side effects has anyone had that I can be on the lookout for?

He's very stubborn and has not even agreed to take the week off work. Or maybe he's just optimistic!

We are in Northern California, the Sacramento area to be exact. He has not had a second opinion at this juncture but is that something we should consider after getting the pathology back?

Thanks for any input.
Nanci

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11 years 3 months ago - 11 years 3 months ago #30912 by mmc
Replied by mmc on topic Husband newly diagnosed
Nanci,

Sorry about your husband's recent diagnosis but glad you found us.

Mitomycin is very commonly used as a wash after a procedure (such as a TURP) to prevent seeding (inadvertently shedding cancer cells).

I was treated with it after failing BCG but it was as an instillation. That's where they used a catheter hose to pour it in my bladder and let it sit for a while and then just urinate after a couple of hours. That's different from what they are talking about for your husband but I was high grade CIS (Carcinoma in Situ).

Depending on the grade and stage, "watchful waiting" is sometimes the course of action. For higher grade but still superficial, BCG is very often recommended. It seems to work better on high grade.

Low grade still has frequest recurrences in many people but just removing them when they occur and doing 3 month cystoscopy exams and urine cytologies as regular follow up to cath it before it gets worse.

If you do research on mitomycin be careful not to pay attention to the information that is about using it as a chemotherapy drug in the vein. None of that information is relevant in the case of bladder cancer.

Sounds like, in your husbands case, they will be using it as a wash right after they remove the tumor. This one time treatment with mitomycin is common and has been shown to be beneficial.

Hope that information is helpful. Feel free to ask anything anytime.

Not so sure that it's wishful thinking. Depending on how the procedure goes, he might be fine going to work the next day. Of course, he could also wind up coming home with a catheter in for a couple of days, in which case I wouldn't recommend going to work. :)

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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11 years 3 months ago #30913 by Patricia
Replied by Patricia on topic Husband newly diagnosed
Nancy..as long as there is no hematuria present many uro/surgeons do a Mitomycin C wash after TURB. There was quite a shortage of it in some parts of the country for a while but i guess thats been taken care of now. Depending on the surgeon and whether there is any blood in the urine the surgeon may keep the catheter in a couple of days. In my case there was no blood and my catheter came right out after surgery. I think i'm a rare one though but i did have one of the top uro/surgeons in the country do my TURB..might have made a difference. I had no discomfort whatsoever after..but i'm female with a shorter urethra so that may be the reason.
UCDavis is a NCI designated cancer center near you..there is one surgeon there who works with bladder cancer but his main interest is prostate cancer
www.ucdmc.ucdavis.edu/cancer/our_team/biodetail.asp?bioid=276
You have many great bladder cancer centers in the state of California....UCSF is great....and i think the best is USC/Norris in LA and i know that is quite a ways..I forget how big California is. But you do want to go to a major NCI university or cancer center to get the care you need with this particular cancer. Always a second opinion and that means a second pathology opinion. This gets understaged all the time and usually not by NCI university or cancer centers.
A re-TURB is really recommended within 2 to 6 weeks of the first TURB.
If you need further recommendations at UCSF or USC/Norris let me know.
It sounds like your uro is expecting a superficial diagnosis..i hope that is true...only a seer can predict that from a cystoscope. I had a solitary 1cm tumor my uro thought was going to be nothing and turned into a T2 Grade 2 muscle invasive tumor. So again...a second opinion a must.
Wish you the best.......Pat

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11 years 3 months ago #30916 by Hox
Replied by Hox on topic Husband newly diagnosed
PLEASE make certain your husband does not ever skip any of his appointments, etc....

I went 9 years with non-invasive and in January they discovered I now had aggressive bladder cancer... and it came to light in less than 3 months! I am so fortunate that I had the check up. I had become complacent and almost skipped out on my appointment. I will lose my bladder and prostate in 2 days but I will not lose my life and for this I am exceptionally grateful. Rick

Rick

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11 years 3 months ago #30918 by nancikay
Replied by nancikay on topic Husband newly diagnosed
So how do we get a second pathology opinion? Do we need to say anything tomorrow to the surgeon? Thanks.

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11 years 3 months ago #30926 by Patricia
Replied by Patricia on topic Husband newly diagnosed
Nancy.....if you are with a uro who is in an office setting and not a university setting ask him what lab will be doing the pathology. You may contact one of the other major centers yourself for a second opinion and take the slides and written report with you. Sometimes the uro himself will decide to send them. Just ask. It just kind of depends on the doctor.
pat

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