Homepage – Forum › Forums › 2nd Time Around with Bladder Cancer › options for treatment second time round
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Nightingale.
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January 23, 2025 at 5:43 pm #48098
wendyw
ParticipantHi everyone,
I am new to this but desperate for some discussion about options. After first diagnosis of high grade, and 2 years of BCG, its back! The BCG has made me very very ill. I had the last treatment in September 24, and I still have severe pain when I pee, I sit and walk with what feels like a red hot poker up inside me, it hurts when I have a BM, and my entire pelvic area including hips, mid lower back, and lower abdomen ache. My urologist is a young, replacement, brought to our area because of his up to date technical knowledge re blasting kidney stones. He inherited us elderly cancer patients, but he seems to be just going through the motions. He has zero ideas on helping with my pain, or my two hourly night time pees.
On my latest cysto it looks like its back. Surgery and biopsy in 4 weeks. When I asked what would occur after that he said chemo instilled in the bladder, like the BCG.
Im 82. Until all this started I was in good shape. Now I am in constant pain, tired, and general malaise. I cannot imagine how painful chemo will be in a bladder that is already very unhappy. Am I wrong? Is it not painful? Does it not irriitate the bladder?
If I refuse, I would like information on how fast these things grow, where they mestatasize, etc. I don’t want to live to be 100! A few good years without pain would be optimum. Continuing to fight a rear guard battle that renders me sick and in pain, does not seem optimum! Do the other divisions of this forum give experience of people dealing with the ongoing battle?
Thank you all for reading. I look forward to your experiences with the chemo instillations.
January 23, 2025 at 6:50 pm #48099marysue
ParticipantHi WendyW:
I too had a lot of issues with BCG. I’ve had 3 rounds of it 2008, 2010-12 and then another round after a second recurrence in 2022. Yes, I had a 12 year gap between recurrences and thought I’d beaten it but who knew? I managed the side effects on the first two rounds with a lot of difficulty and them reducing the dosage to 25% in the end. With the 7 that I did between late November 2022 and January 2023, it was way worse because it was a different variety of BCG that massively inflamed my bladder and I had to stop. I’m on regular checkups right now and it is a wait and see game but I’m over 2 years cancer free.
When BCG doesn’t work a chemo regime is often the second choice. The newest combination is Gemcitabine/Doxataxcel or GEM/DOC for short. I have not had this treatment but others I have talked to in some cases have found the treatment more tolerable. Side effects can be similar to BCG.
4 months is a very long time to be in pain from the treatment. But that being said, this last round of BCG made my bladder so inflamed that it took over a year to heal completely.
Suggestions:
1) If you haven’t already done so, please get checked to see if you have a UTI. UTI symptoms and pain from the BCG can be very similar. A UTI can also irritate an already irritated bladder and urethra. Pelvic pain can be from a UTI as well.
2) If your doctor(s) agree try Tylenol and or Ibuprofen to manage the pain.
3) Applying a hot water bottle or heating pad to the abdomen does wonders for abdominal pain.
4) Some of your pain could be from any tumours present. I had back pain with bladder cancer and that pain disappeared after the surgery. The nurse told me it is often called “referred pain” because that is the location that the pain caused by the tumours chooses to go.
5) If you haven’t already done so, I suggest eliminating caffeine from your diet. So that means no caffeinated coffee, tea, cola drinks and maybe even chocolate. Caffeine and BCG are not friends. Drink lots and lots of water, herbal teas like peppermint and chamomile, nourishing soups. The extra liquid keeps your urine diluted and less irritating for a sensitive bladder.
6) I would also get checked for a yeast infection. A yeast infection can irritate the bladder, urethra, vagina, lady parts and if severe enough irritate the bladder and cause colon irritation. Been there done that. I found that this was a side effect of the BCG. I was lucky enough that over the counter meds worked to clear it but if you haven’t had a yeast infection before, I recommend getting checked by your family doctor to make sure you actually have an infection and ask what meds are appropriate for you.
7) For frequent peeing – ask about meds for an overactive bladder. My uro prescribed the guy’s prostate med Flomax for me. It took a couple of weeks but it slowed down the frequent night time trips. I was only allowed to be on it for a short time being female. An overactive bladder and inflammation seem to go hand in hand. I found as my bladder healed from the inflammation the bathroom trips lessened even more.
As for the decision about continuing treatments post surgery that is a discussion to have with your doctor. I understand your position. My late mother-in-law was diagnosed with lung cancer at age 80. If she was younger and stronger all she would have needed was a surgery and the outcome could have been pretty good but she was too frail to undergo general anesthesia. That left the potential options of chemo and radiation. She chose not to have any sort of treatment because like you she wanted to live the last part of her life as well as she could so if it meant fewer days but of better quality then that is what she wanted. She lived for another 3.5 years before the cancer claimed her.
My understanding of metatisis with bladder cancer is that it usually goes to the lymph nodes just outside the bladder and then to distant locations in the body from there. It can go to the lungs, major organs, bones. How fast it grows and goes seems to vary from person to person. How pain free you would be, I can’t say. Again, I suggest asking your doctor for this information and if no treatment does become your choice I suggest asking about palliative care where you would be under the supervision of a team of professionals to manage symptoms as they appear on the last part of the journey.
I suggest consider attending our Women’s Only Support Group meeting. We meet on the first Wednesday of the month and are from all across Canada and have a wide range of patient experience and some may be able to offer more valuable suggestions than those I’ve made. We do have patients with metatisizing cancer and some that have done the chemo in the bladder. Both could probably answer some questions and give you some insight that may be useful and maybe help give you the strength to carry on. It is not uncommon to feel like throwing in the towel and say, “What’s the use? It keeps coming back.” This journey is often a long, winding and very hard road. That is where the company of fellow patients comes in. You are not alone.
The next meeting is on Wednesday February 5th at 7PM Central Time. This month the time might be a bit different due to my co-facilitator being in her home province of Newfoundland versus her regular residence in Manitoba. We meet on Zoom but you can join by phone if you are not a Zoom user. If interested please reach out to Angela Peletier at angelap@bladdercancercanada.org and she will send you the Zoom or phone link.
All the best. ((((HUGS))))
January 23, 2025 at 8:51 pm #48101wendyw
ParticipantThank you MarySue. Such a fast response. I have had several tests for UTI. Always negative. Will get another one. Yes, a long time to be in pain. I actually have been given tramacet, which helps for a period of about 5 hours, and I don’t take more because it makes me feel weird.
I have been wondering if I have developed a BCG infection somewhere, but when I mention it, my GP says I have to speak to Urologist….Ha Ha.
But yes, the thought of something more to add pain, that may or may not work, seems awful.I will defintely try to get on to the women’s forum meeting by zoom in Feb. I’m sure someone will have had similar experience, and good advice.
Such a relief to find help! Thanks again.
Wendy
January 24, 2025 at 3:14 pm #48102Nightingale
KeymasterHello Wendyw,
MarySue is one of our exceptional moderators and always provides detailed explanation based on her first hand experience. Before I saw here reply to you, in my mind I was thinking this is a case for MarySue!…and then I scrolled down to see she has already replied.
I would like to add something that is somewhat contradictory to what MarySue has indicated about staying away from caffeine. I first want to say that I’ve never had BCG treatment so take my thoughts with a grain of salt. When I was recovering from my Turbt’s (scraping of the cancer) I drank green tea made from loose leaf, which has less caffeine. In addition I had with my oatmeal breakfast blue berries and strawberries with a splash of milk and some yogurt. I found that combination to have a calming effect on the irritation in my bladder and ureter (tube leading from the kidney to the bladder). At minimum, eat the berries as they are antioxidants and can help.
That is all I can offer. I hope these ideas help you. Do keep us informed of your progress as it also helps other patients who might be wrestling with similar issues.
My Best,
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