Calendar for February 2022 – Who is up for surgeries, tests and treatments?

[marysue]

Hi all:

We are heading into the second month of the new year already.  Where does the time go?  So far this winter has had a lot of weather challenges particularly in western Canada where we have just come out of one of the coldest cold snaps that we have had in a very long time.

The covid pandemic as we all know is still presenting challenges with the very contagious omicron variant causing staffing shortages in every sector of our society, particularly the health care system.  Our brothers and sisters with bladder cancer that are waiting for surgeries, tests and treatments are way more than anxious wondering if and when their needs will be met.  Let us continue as we have been doing – send out our positive thoughts, prayers, best wishes for those in this situation.  And for those of us that are past the treatment stage – do what we can to help those that are in the situation we once found ourselves in.

Hang in everyone – hopefully spring and an end to this pandemic is coming soon!!!  ((((HUGS))))

[Danielle]

Hi MarySue,

My 2nd course of BCGs have been more uncomfortable.  The nurse has been having difficulty getting catheter in and has had to use a more rigid one.  I’m now starting my 4th on Monday.  As a result I’ve developed a UTI and quite uncomfortable…..my results just came in today.  My question is, can I continue with BCG or do they stop until UTI is gone  My Dr. will only see lab results on Monday and probably prescribe an antibiotic.

Thanks.

Danielle

[Jack Moon]

Hi Danielle

My experience was that no BCG treatment was given while I had a UTI which I had several.

Wishing you all the best,

Jack

 

[marysue]

Hi Danielle:

I’m sorry to learn that the new set of BCG treatments are causing more discomfort and now a UTI.  As Jack replied, the general protocol usually is to stop BCG treatments if you have a UTI because the antibiotics used to treat the UTI will kill the BCG rendering the treatment useless.

As an aside that you have probably realized is that UTIs cause pain upon urination and the BCG also inflames the urethra as well as the bladder wall so that is another reason to suspend treatments.  You wouldn’t want double pain in that area. Temporary suspension of BCG treatments doesn’t usually affect the overall outcome but if you are concerned about that I suggest talking to your doctor.

I was fortunate that I didn’t have issue with UTIs during BCG treatments but did have difficulty when one nurse tried to insert the catheter at the beginning of my second set of 6.  My urethra is partially prolapsed as what she termed a  “casualty of war” with doing BCG treatments and so many cysto checks.  She switched to using a pediatric sized catheter and lubed it up with lidocaine gel which helped with the insertion.  I suggest maybe asking your nurse if this is a possibility for you going forward.

UTIs are a common and unfortunate nuisance for some when doing BCG treatments.  The other suggestions I have are – being female, keep your “area” really clean by pouring cool water over yourself when voiding post treatment and stick to showers while undergoing treatment.  That way water won’t back wash up into the urethra.  I also drank a lot of cranberry juice, water and herb teas like peppermint and chamomile.  I stayed off of caffeine while doing treatments as I found like some others did, the caffeine irritated the bladder and I believe the urethra as well.  I know this because to this day if I drink too strong tea, I get a burning sensation when I go.  I also took and still take cranberry pills as a preventative.  They do work for some.  Drinking lots of water will keep your urine diluted and help flush the bacteria out of your bladder.

Hope this helps.  Best of luck going forward.  (((HUGS)))

[Danielle]

Thank you Jack for replying.

This is becoming very painful since my 3rd surgery in December due to a recurrence.  My first session of  6 BCGs in October/November obviously didn’t work.  The surgery was more painful as there were 5 more smallish tumours, still noninvasive thank God.  I had to stay overnight with a catheter and sent home with it as well and it was to remain in place for a couple of days, when I could take it out.   It was so uncomfortable that I took it out within an hour of being home….felt better and was voiding fine….I’m a typical retired nurse, don’t listen.

Anyway, I’ve just continued with pain on voiding, so finally had a urine test done through my family Dr. and it shows a UTI.

So that’s where I am at the moment.  Feeling very discouraged I must say.  Better days ahead.  It could be so much worse, which is where my mind goes at times…positive thoughts are key.

Danielle

[Danielle]

Hi MarySue,

You and Jack have been so helpful and kind.  Thanks for all of your advice.  I do stay away from baths for sure and only shower, also trying to drink more cranberry juice now and more water.  I have never been a very good water drinker and tend to stick to coffee, which I’ve reduced to one a day, in the morning.  My oldest son is a herbal tea drinker and has sparked my interest and now I have quite the collection, especially chamomile.   I also am trying cranberry capsules.  This diagnosis has certainly been life changing with quite a learning curve for me.

The nurse said the same thing regarding my lady parts….”battle scars” so to speak, after 3 childbirths and a total hysterectomy a number of years ago, my bladder and urethra tend to prolapse.  She has also had to switch up catheters and I think we’ve finally found the one that works along with lots of freezing gel.

I will cancel my BCG treatment tomorrow and probably my Dr. will start an antibiotic.  I guess they just tack on the treatment I miss at the end.

Thank you again.  Stay well.

Danielle

[marysue]

Hi Danielle:

No worries.  That is what we are here for – to share ideas and give support.  The only hiccup I had towards the end of my 21 BCGs was that I developed a yeast infection which required treatment.  Since I was sore and itchy from that, the nurse agreed with me that I should postpone the BCG treatment for that week and treat the yeast infection.  I got a script from my GP and the infection went away and I resumed my treatments the following week.  They did tack the missed one onto the end.

I too, have had the same battle scars except it was 4 kids and then the hysterectomy.  I had a debate with the OB/GYN doing the surgery about leaving in the cervix to offer extra pelvic floor support but I opted to have it removed along with the uterus since as we know it is a potential cancer site.  I had the big H surgery because of a large fibroid.  Although it wasn’t cancerous it was causing serious issues and I took it as a warning sign that there was a possible cancer risk in my future.  Little did I know that it would be bladder cancer.

I have found yoga, walking and kegels seem to give some extra strength to the pelvic area.  I do have a cystocele that was repaired with the big H surgery but has since redeveloped probably due to the bladder surgeries and all the intrusions into my bladder.  So far it isn’t too much of an issue but I keep an eye on it. My current urologist told me that if it needs treating he will refer me to another uro at our urology center that specializes in female anatomy and bladder structural issues.

To get myself to drink more water, I place a cup next to me when I’m on the computer and I drink that the same way I would tea when I’m answering my emails.  I enjoy hot water with a little bit of lemon juice in it first thing in the morning and follow that with some green tea which does not cause issue like regular tea.  It is tough, but it is worth it to push oneself with this.  Your urinary tract will thank you for it.  (((HUGS))))

[Danielle]

Hi again MarySue,

I’m learning so much from you.  I too have had this vaginal itching and soreness, so bought vagisil wash which has helped ….I didn’t know what to think it was and with the UTI, it’s pretty uncomfortable.  Im always trying to cure myself so I don’t bother anyone.  Probably part and parcel with all the scopes and TURBTs along with treatments and betadine solutions.  I haven’t experienced much with UTIs or vaginal yeast issues over the years, so it’s all a learning curve for sure.

I too had a large uterine fibroid which caused severe monthly, painful and heavy periods.  My OB/GYN had the same conversation with me before surgery and opted to do a total hysterectomy, thus causing a bit of a bladder prolapse.

Thanks again for all your advice.

Danielle

 

[marysue]

Hi Danielle:

Yeah, the uterus does a good job supporting the bladder.  I didn’t know how much the muscles and ligaments in that area would be affected until after the surgery and I had to deal with all that.  For a while things were okay but then the cystocele redeveloped but as mentioned it isn’t a big issue so I leave it be for now.

I’d get the vaginal soreness and itching checked out.  It may be a yeast infection and that would require treatment either with an OTC or a script from your GP.  I too, like to try to treat myself but any new unrecognizable or first time symptoms should be checked out.  That way you can confirm what it is and if there is a repeat you know what you are dealing with.  When I got the yeast infection during the BCG treatments, I needed a script because the usual Canesten and Monostat didn’t work at the time.  Years ago I found a Betadine vaginal anti fungal cream was really good for eliminating yeast but I haven’t seen it in pharmacies for a very long time now. I have no idea why it is no longer available.

What I found with the BCG treatments is that they totally upset the balance in my body.  The effects I experienced are not on the list of side effects but I guess it is just the way my body reacted.  I am susceptible to yeast infections anyhow so, when my digestive tract got upset from the treatments, I wasn’t too surprised that the upset spread to my vagina.  Oral Canesten works for me along with the cream you can insert in the vagina.  Keeping sugar/sweet consumption to a minimum is a must for me to avoid triggering an infection.

I had severe constipation with the treatments which may have been part of the yeast infection as well.  I took Senokot with a stool softener as needed and when my treatments were over, my bowels got back to normal after a few months. For me the body systems seem to go hand in hand.  If I have a digestive issue, I will develop a yeast infection and sometimes that will lead to a UTI. Right now, I take a strong probiotic as well as the cranberry.  It seems to be enough as long as I watch the sweet/carb intake.

I have found that my body has been way more sensitive since finishing cancer treatment and I just have to live with that inconvenience.  However I look at it as a small price to pay for being able to have cancer in my rearview. Best wishes.  (((HUGS)))

[Danielle]

Yes, my whole digestive system is off balance, as well as constipation…..I wasn’t even relating it to the treatments….but now, after talking to you, I think it is.

Thank you again and I’m heeding all your advice.  I will be in touch with my urologist tomorrow.

Take good care.

Danielle

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