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Seeking advice
My husband was diagnosed with T1, high grade transitional cell bladder cancer last year. It was non-invasive, as well. He went through 2 cystoscopies along with 6 weeks of BCG treatments, which made him feel awful for about 3 days each time. It seemed that with every BCG treatment, he felt worse and worse. He was supposed to follow up with his urologist every 3 months for a cystoscopy, but did not.
In July of this year, he started having the same symptoms he had before. So, he went back and the cancer had reoccurred. Now, this year he’s went through 2 more cystos and started his first of 6 BCG treatments today. He is 62 years old and a smoker, which we have been told is the number one cause of BC. He has cut back, but just cannot seem to quit, which scares me to death. I’m so afraid that he will not continue his follow up treatments again this time. He has had bladder pain and burning when he urinates ever since the first cysto and is very discouraged. Has anyone else every experienced pain for that long (over a year)? Any suggestions to help relieve the pain as well as help with the side effects of the BCG treatments? -
1 Reply
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Tamcro,
Welcome to the forum. Thank you for being there for your husband.
His story is not unusual, Many of here were 20 to 40 year smokers and thought the world would end if we didn’t have our smokes. There is life after smoke. There being nothing worse that a reformed drinker or smoker who is full of him/herself, so at great risk may I suggest that he talk to his doctor and start on a high dose patch to ease the withdrawal symptoms. Yep, cigs are addictive – I didn’t believe it, I learned. No one quits until they are ready. Nagging is anti-productive. In 6 months, he will feel sorry for the poor smokers standing if front of stores, in the snow, having a cigarette break. End of my cigarette sermon. [after 15 years, every once in a while, a random thought pops up – a cigarette would be real good about now]
Bladder cancer does come back. I am starting year 4 (or 5) depending where I start the count. When the 3 month appointments don’t happen, you start all over again; better to stay on schedule.
BCG is the proven miracle drug for the majority with noninvasive bladder cancer. Individual reactions to BCG vary widely. I get hit hard, lose 2 to 3 days, and have strong meds available. BCG gets rig of my cancer, but it always comes back. Holding it at bay is not so bad, in my opinion.
I find that Pyridium helps (check with his doc), find the most comfortable position possible, heating pad placed over the bladder and HOT showers.About 2 hours after the first BCG void, things can get tough; burning, urgency,passing clots and just a dribble of urine. Getting through takes finding what works best for him.
Lie down or walk – urinate standing or lying down – heat or cold on the bladder – have company or be alone – drink extra (when allowed) Hot or Cold drinks. Keep in mind that BCG is what WORKS.
Talk to your doctor and care team. Thee them EVERYTHING that is bothering you. They are there to get you through the treatment. Don’t hold back.
You two together can get through this.
Best
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis 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# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
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