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RE: My husband is having much pain- others?

4 years 7 months ago #48110 by raider
Jannie,

In regards to your husbands pain it may be similar to the pain I was having for over a year before I was diagnosed with CIS. I was being treated for OAB for over 3 years and in the last year and a half I had severe urethral pain at times and my urologist kept saying it was a possible prudendal nerve issue.

IT WAS NOT!!! my bladder was so irritated and covered with CIS that when I sat for long periods of time the pressure of the pelvic floor was pushing on my very damaged bladder causing the pain. I'm in remission now and have NO pain

Best wishes and good luck

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4 years 7 months ago #48108 by Flamenco.
It is unusual that pain is caused by the initial tumour,although it can affect nearby nerves as Sara Anne said. I believe the majorityof people who are diagnosed had no idea they had a problem, until something showed up on a scan, they had visible blood in the urine, or something showed up on a urine simple check.
I would certainly ask your doctor if he can prescribe something that does not go in contra of the forthcoming op. What I would reccommend in the meantime is that he increase his liquid intake- it could be an infection, which would be helped by more "flushing", but also I have found from my own experience that becoming even slightly dehydrated has a negative effect on my waterworks as regards discomfort.

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4 years 7 months ago #48106 by fighterm
I read that cancers develop over decades, not one year. But that does not matter. Only the stage and the grade matter. My cancer was present on a ct scan a year ago, but was missed. They told me that it still small now.

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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4 years 7 months ago #48105 by Jannie
Thanks for the prompt reply Sara Ann- so appreciated. I just haven't read many folks say they were having so much pain early on. We'd love it if the pain stemmed from a nerve being pressed. That would be so lovely!

This forum is a Godsend! I meant to write CT scan- not MRI. Mick is actually having the CYSTO this Friday as my husband was seeing a local urologist until we connected with Hopkins. I imagine next steps will be the TURB, as he is not going to be put under this Friday. Hope the TURB happens soon. Like everyone, the waiting game is maddening!

I am relieved to hear that this level of pain does not necessarily mean advanced stages. Mick is tough about the pain- he's hanging in there.

Talk about Baptism by fire. I'm clocking in 6 to 8 hours a day reading. Then each evening my husband and I go over the key information as best we can. I learned a lot from reading the forums on this site. You folks rock!

We are embracing the "no fear, just faith and good docs" mantra. We are keeping upbeat and positive. Still, breathing is hard (I sometimes realize I was holding my breath without notice!). We have 7 kids who adore their dad, (me too!) and today is our wedding anniversary. So, lots of good blessings in our lives. Again, thanks Sara Ann. I found your post comforting.

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4 years 7 months ago #48104 by sara.anne
So sorry to hear about your husband's problems, Jannie. It is important to remember that while smoking and a few specialized environmental factors are thought to lead to bladder cancer, for most cases we will never know what started it.

I assume that your husband is having a TURB (trnsurethral biopsy) at Hopkins? This is a biopsy done under general anesthesia and samples are taken to send for pathology analysis for an accurate diagnosis. Most of the pain relievers have anti-coagulant properties and I am pretty sure that the uro doesn't want bleeding problems during the procedure. Hopkins is an excellent place for him to be treated.

Pain is not an indicator of the seriousness of the cancer. It is more likely that the tumor is near a nerve which is responding with pain. Hope he can hang in there until Friday. Perhaps he should consult with the doctor again if the pain becomes too much to bear and the doctor can come up with an alternative that does not affect coagulation.

Will be keeping really good thought for you both.

Sara Anne

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

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4 years 7 months ago #48103 by Jannie
Hello, my darling husband Mick (age 61) was diagnosed with bladder cancer last Friday via MRI. A urinalysis 3 days prior showed microscopic blood in his urine. The tumor is 4.5 cm large- yet we won't get staging and high/low status until after cysto/biopsies. He's going into Johns Hopkins (we're so grateful!) this Friday for the cysto.

Mick is experiencing EXTREME pain all the time (level 7 to 9). Pain started 10 days ago at a level 3 or 4 only with urination and increased daily and became fairly constant (in between urinating, during urinating etc.) Doc says no pain meds until after the CYSTO. My question: Have others on this forum had this level of pain prior to getting their staging?. Can this pain still mean my sweet dude is in early stages- or has the train left the station and we are off to advanced cancer?

Like everyone with initial cancer diagnosis- we are in shock. The absolutely odd thing is that my husband is lean, eats a pristine nutrient-based diet, has been taking antioxidants for a decade, exercises a lot, doesn't smoke, and drinks alcohol with moderation. He gets a physical each year, yet didn't get a urinalysis and the urologist suspects he's had this cancer about 1 year due to its large size. Mick had no symptoms at all until 10 days ago. His factor is likely family history of cancer (although not bladder cancer). His dad died of pancreatic cancer at age 43 and his dad's folks died of cancer at 61 and 62. We are sad and scared...and this pain level has us pretty freaked out. Any words to share with us?

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