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Painful cystoscope

1 year 4 months ago #53843 by sara.anne
Sorry that your husband has to go through this. I am going to sound a bit harsh here, but want to be sure there is no misunderstanding the situation. From what you said, your husband has "carcinoma" (that is the Latin word for cancer) and it is "flat," I am going to assume that he has "carcinoma in situ" which is a form of bladder cancer that is more like a rash on the bladder lining than a tumor. CIS is high grade and very dangerous if not treated. High grade means that it is rapidly dividing and thus has the potential to spread, rapidly.

I also assume that your husband has been prescribed BCG treatments and that these are what is causing the problem. BCG IS THE TREATMENT OF CHOICE FOR CIS and probably the one thing that can prevent it from spreading other than radical cystectomy (bladder removal.) If your husband thinks the cystoscopy for a few minutes is painful, wait until he has to have traditional chemotherapy or have his bladder removed....these make BCG treatments seem like a walk in the park. By not continuing with the treatments he may be signing his own death warrant.

I have had the full course of BCG....6 treatments followed by maintenance treatments for two years. I also had CIS and now have been cancer-free for almost 9 years. It was worth it.

I realize that as a female the cystoscopy entry is not quite the Big Deal it is with some males. He needs to talk seriously with his urologist about options. More numbing gel, perhaps even something like Valium prior to the treatments. If he does not get sympathy/help perhaps it is time to find a new urologist.

BUT make no mistake about it....abandoning the treatments now will only lead to much worse later.

I wish you both the very best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 year 4 months ago #53842 by Jack R
Marijodon,

Sorry to hear of your husband's issue with treatment pain. Pain associated with bladder cancer treatment is an age old topic, and the development of a variety of ways to minimize that pain has made treatment more acceptable.

Can you or your husband, if he is willing and would like to talk about the problem with the group, describe in some detail the problem ? In all likelihood, people here will have suggestion on dealing with the problem. This site has been a great help to me.

The cause of pain is a bit unclear from your posting. 'Cystoscopy pain' is typically described much differently than 'treatment pain'. Does the troublesome pain occur during or after bladder inspection, during or after biopsy or is it during or after treatment with BCG or other intravesical therapy ?

As a last option, if the current doctor has run out of ideas, a second opinion focusing on making treatment possible may be in order.

I would hope that help can be found here.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis T0

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1 year 4 months ago - 1 year 4 months ago #53840 by Alan
Marijodon,

Welcome! We are all sorry for the reason to be here but, pat yourself on the back for being an advocate!

Cystoscopes? No fun but, it is "uncomfortable for about 30 seconds going through the prostate. Painful? Not really. Yes, I pee razor blades for a few voids after. Make sure he does get the numbing gel/lubricant. Heck, I have had 15+ of those lovely tests. It is doable.

Just a few thoughts. First how bad are the side affects on his treatment? Some do have to stop...very few. Perhaps your husband could read some of our posts about BCG (I am assuming that is his treatment). While it is no fun, it is doable and it WORKS. Yes some pain urinating, some have bladder spasms, fatigue, chills etc. This is WAY easier than chemo. All of us will be happy to respond or interact if that helps.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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1 year 4 months ago #53839 by marijodon
My husband was diagnosed with bladder cancer in July, 2017. He has had two treatments and refuses to go back because they are too painful. We asked the doctor if he could get them in the hospital in order to be put to sleep. He said no. I am at a loss as to what to do. His cancer is carcinoma, early stage, flat cell non invasive.

Looking for some comments and help

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