- This topic has 15 replies, 5 voices, and was last updated 2 months, 2 weeks ago by
.
-
Posts
-
As a 74 year old male, until now I have escaped needing ANY hospital treatment. It’s scary to know that like some friends and relatives, I too contracted the big ‘C’. After getting many tests in rapid succession I had my TURBT last month. Dare I say I was fascinated and intrigued by the whole process of prepping for the morning surgery (reward after was 2 popsicles!) and going home in relative comfort that afternoon.
The resulting changes from the day before raise my questions: a) What is actually causing the burning pain when urinating (which gets better as time goes on)? b) Why does is seem my bladder is half empty (or more) when I empty out? c) What is triggering the accentuated urge to urinate? My inquisitive mind just got “it’s normal” from the urologist’s office.
My diagnosis is “invasive high grade papillary urothelial carcinoma; invades lamina propria; muscularis propria not identified”. Growth was 17mm x 9mm. My urologist/surgeon advises I need another TURBT to get a biopsy of the muscle. (Hmmmm… maybe add some more gemcitabine chemo then) As I understand it, the stage might be as nice as Ta or possibly T1 or higher. The latter might lead to a cysto.
My next TURBT is 9 days from now. I’m hoping the prognosis is NMIBC, that it’s been caught early enough.
This BCC forum with so many helpful, supportive discussions on conditions and treatments gives me hope that I’ll get through this chapter after the results are further determined for planning in a few weeks. It’s the current unknown that causes me anxiety.
I believe that the burning pain during urination is the effect of the insertion of the invasive instrument through the urethra through which the tumour was removed. It will improve over time but drink lots of water. It is not a pleasant experience -I know. The urge to urinate also is a consequence of the procedure along with the healing wound inside the bladder where the tumour was scraped off. This also will improve but more slowly. Give yourself lots of time to heal as you may feel easily exhausted as well. You may not hear the results of the biopsy for many weeks. Try not to read too much into the timeline. I hope your healing goes well and the outcome for you as well. Be prepared to address this life changing diagnosis over the long term.
Hello Cruiser22,
Welcome and thank you for posting your situation. As Cdn indicated, the burning is caused by the procedure and will subside and eventually stop. Eveyone is different, but I found that green tea helped calm the sensation. It along with lots of water. I found the more I urinated, the less the ‘sting’. BTW, I am a 15 year survivor. My BC was low grade non-muscle invasive.
Here’s wishing you a great outcome and ‘uneventful’ next turbt!
My Best,
Hi Cruiser22:
After effects of a TURBT as mentioned can vary from person to person but what you are mentioning seems to be within normal range. Bladder spasms and urgency often occur after a TURBT surgery. Things will improve with time but if they don’t reach out to your doctor. Placing a hot water bottle or heating pad on the abdomen helps with spasms. It is the spasms and urgency that causes your bladder to want to empty when it is only half full. I have discovered that the intrusion of scopes and catheters can trigger this effect.
The main thing to be on the alert for is post op infection which would give you symptoms like fever, chills, cloudy or foul smelling urine and a general feeling of being unwell and possibly burning when going and some abdominal or back pain. If that happens contact your doctor ASAP or if needed go to the ER at the hospital where you had the surgery.
I’ve had 3 TURBTs 2008, 2010 and most recently in 2022. What I learned about recovery is as mentioned drink lots of water and I agree with the others the increased water intake will help alleviate the burning which was caused by the surgery itself. Your poor urethra got the shock of its life with the insertion of the scope used to remove the tumours. As one late beloved member of Bladder Cancer Canada described it – your urologist will boldly go where no man has gone before; sorry for the Star Trek reference but many of us found it funny. The use of the scope instrument also causes some swelling in the nether regions which will subside with time. For guys, use of an ice pack in that area sometimes helps. Many guys do this for a prostate resection (TURP) which causes swelling.
Recommended steps for recovery in addition to the increased water intake:
1) Take short walks as able, gradually increasing the distance.
2) Rest as needed including extra naps.
3) Check with your doctor before resuming driving, having sex if you are in a relationship, going back to work if you are still in the workforce.
4) Avoid heavy lifting and heavy activities for 4-6 weeks. The surgical sites are open wounds in the bladder and if you strain too hard you will disturb the scabs on the surgical sites and start bleeding. If that does happen increase water intake and rest more. Call your doctor if the bleeding doesn’t stop.
5) Nightingale says green tea worked for him and some others have said the same. Caffeine was not my friend. I avoided it entirely until I was healed.
6) Avoid constipation as straining can cause bleeding from the surgical sites. Use a stool softener/laxative if needed. Check with your doctor or pharmacist if you are unsure about what product is right for you. I found Senokot S the most helpful.
As you already know, the second TURBT will confirm the diagnosis of the first. It sounds like you are a borderline case for MIBC (muscle invasive bladder cancer) so your doctor is doing due diligence by confirming the diagnosis since it will make for a different treatment path. And yes, there will be a bit of a wait to find out the results and it can be an anxious wait. Most of us find this one of the most difficult parts of the bladder cancer journey. Even though the upcoming journey might be a bit rough in places, your mind does settle down a bit once you know which road you are on. Many of us, including myself just try to stay busy to pass the time and take our minds off the situation. The one small positive thing is that with the surgery and now a second surgery, the cancer has been removed or at the very least slowed down and bought you a bit of time. Hope this information helps. (((HUGS)))
Thank you all for your kind words, helpful knowledge and experiences. I’m doing most of the recommendations suggested except for the green tea and hot water bottle – I’ll have to try that.
After my next TURBT I’m off for a European vacation in 4 weeks. Surgeon says okay but “take it easy”. If the diagnosis becomes MIBC, that recovery will be planned in consultation with my GP and Urologist. I see many considerations and options apply so I would likely have many questions. Hopefully, I’ll be back with a more positive outcome, otherwise I’ll transfer over to the ‘invasive’ forum. I chuckled at that Star Trek reference which was spot on! 🙂
It’s the end of my ‘foreign lands’ vacation and 5 weeks after my second TURBT on July 3. The pain has gone but the ‘urgency’ continues. Being anxious for the pathology report, I was able to finally access it. The diagnosis was “BLADDER MUCOSA WITH ACUTE AND CHRONIC INFLAMMATION AND REACTIVE CHANGES” which concerned me. I emailed the surgeons office to check the meaning and the surgeon replied “its actually good news as its inflammation, not cancer.” Relief! Seems like a positive outcome so far.
My call with the surgeon to review with potential next steps will be in 2 days. For those that can relate to this, what questions should I ask to get a good, detailed understanding of my condition and further recovery expectations? I assume there will be at least scheduled tests over time to monitor for any new BC growth.
The call with the oncology surgeon indicated that the pathology report did not state that there was evidence of any cancer reaching the detrusor muscle (the main reason for the 2nd TURBT biopsy sample). He submitted a request for this specific information. So cystectomy not ruled out. Marysue appears correct that I am a “borderline case” at this point. In the meantime, as the cancer is high grade invasive, he suggested to start BCG to reduce the risk of a tumour recurring. So I’ll be starting this program in 3 weeks.
Hi Cruiser:
Starting BCG sounds like a reasonable plan. It will at the very least slow down a recurrence and at best turn out to be the correct path and be successful. With T1 staging which is what sounds like where you are at, people are often given the option of trying BCG first and then if there is a recurrence a cystectomy may be the next recommended option. It seems like it will be a case of wait and see for you. Best of luck with the BCG treatments. (((HUGS)))
Hi Mary Sue.
The 6-week BCG treatment went well – no appreciative side effects. Post-treatment, the suggestion was further treatments in the new year. The ‘urgency’ still remains. As a side note, it was fascinating to learn how the brain receives changed nerve signals from the altered bladder which triggers urgency. My next chat with the oncologist is end of this month. As I think you elude to, further treatment along the lines of intravesical therapy methods are likely due to my ‘high risk invasive’ condition. I do however have some exploratory questions for the doc.
So what’s next? I’d like to know the condition 8 weeks after the BCG – is it suppressing new growth or not? Simple would be urine sample and cysto exam. I think this would help identify if the BCG is working or not. If working, the logical route would be to continue with the same gold-standard treatment. I also wonder if giving my immune system a boost by intake of echinacea might be worth experimenting (although there’s no clinical support at this time). Any further thoughts?
If BCG is not effectively working, why? There’s a study where a molecule (ITG BB) is found on the surface of cancer cells that weakens the effect of BCG. For therapy alternatives, there are newer treatments, such as immune checkpoint inhibitors [e.g., pembrolizumab] and chemotherapy [e.g., gemcitabine with docetaxel], that are emerging for BCG-unresponsive cases. Have you or anyone else come across this research?
So as you put it “it’s a waiting game”. so we’ll see what the oncologist thinks for next steps. So far so good.
Thanks for your continued support and encouragement (HUGS back)
Hi Cruiser22:
I’m glad to learn that you got through the 6 weeks of BCG without much issue. As for finding out if it is working most people have a follow up cysto a few weeks after completing a set of treatments. That is necessary because if a tumour or tumours have shown up despite the treatments then treatments will stop and you would have to have another TURBT to remove them and the pathology results would guide your doctor as to next steps. It is fairly common to have recurrences during BCG treatments. If there are repeated recurrences during treatment sets that is when most doctors will consider other options like trying another drug in the bladder or if there is sign of progression or high risk of progression to the muscle invasive stage that is when your doctor may suggest considering having your bladder removed.
I know of people that have tried the Gemcitibine/Docetaxel combo with good results when BCG didn’t work or they couldn’t tolerate it. As for the other drugs you mentioned, I don’t have any knowledge of them, nor know anyone who has tried them. Gem/Doc is a dual chemo treatment in the bladder. The nurse will put in one drug first for about an hour, drain it out and then put the second drug in for the second hour. I believe the Gem goes in first. I have heard from the women in our Women’s Only Support Group who tried it that the Gem which goes in first can be a bit uncomfortable but the Docetaxel cools the bladder afterwards. They mention that side effects are similar to BCG.
As for which drug treatments are best for you if BCG doesn’t work, that is up to your doctor to decide. When it comes to taking extra supplements while doing BCG, I suggest checking with a knowledgable natural health practioner and keep your uro/oncologist in the loop if you do go ahead with anything. Certain supplements can interfere with BCG and other cancer treatments. One supplement that is safe is taking additional Vitamin D. There are studies out there that support taking extra Vitamin D (about 2000 IU) which are supposed to boost the BCG. When I was doing treatments that was all that I took. I resumed other supplements once my treatments were finished. As an additional FYI – if you develop a bladder infection or any other infection that requires antibiotic treatment while undergoing BCG treatments you will have to stop the BCG. Antibiotics kill off the BCG rendering the treatments useless. Treatments can resume once the infection has cleared up. If you need to stop BCG to take an antibiotic it generally does not affect the outcome but it would be prudent to have a discussion with your doctor should this situation occur. Hope this helps. Best of luck going forward. ((((HUGS))))
Hi Mary Sue,
Feb 12/26: 2 weeks ago I had my cysto after first round of and sadly, the oncologist viewed recurring cancer. I was feeling great and positive, until this. The image was unclear to me (looked like CIS compared to the previous tumour lump) but with his thousands of prior experiences cancer was obvious to him. So I have another TURBT scheduled for early March. I’ve since had a short email discussion about next treatment options, including some trials and those products not yet approved by Health Canada. He seemed to lean towards GEM/DOC, which at this point I think for me is best. We’ll see what the TURBT and pathology report detects, if it even changes the type of cancer seen.
As I mentioned before, there’s new research on BCG effectiveness for NMIBC conditions: https://pmc.ncbi.nlm.nih.gov/articles/PMC12730356/ This is new in December 2025. I’m one of those that fits into the 40 to 60% recurrence. I can understand BCG is the”gold standard” for NMIBC as it’s relatively simple and the least invasive (in my opinion). The pathology report does not detail any testing for integrin β8 which, according to the research, is immunosuppressive to BCG treatments. I spoke to a local oncology nurse and received some advice. Now, I’m going to work with my GP for contacting the pathology department to see if this integrin β8 test can be added to the pathologist’s repertoire of tests. If it is possible, it could help oncologists with cases like my BCa, diagnosed as ‘aggressive high risk’ that might initially upgrade treatment over the standard BCG. I’ll report back as next steps conclude, but I was wondering if anyone else has seen or reviewed this path of research? ((HUGS))
I had my third TURBT yesterday. Same routine but after affects found the vacating a bit more painful/stinging so will apply suggested products Mary Sue and Nightingale recommended. Biopsy sent to Pathology and results in 3 weeks. Followup with oncologist in April for next treatment. So far, GEM/DOC protocol appears to fit best for my T1 condition. Research on treatments continues.
While in Pre-op I asked the surgeon/oncologist for clarification on status of testing for the Integrin β8 on cancer cells (Pathology advised they do not discuss testings with patient – refer to doctor). Oncologist said the pathology test is “…not available as it’s in limited small trials”. I recall reading there are 2 companies in California that can test this cancer molecule, but this seems a bit too much to undertake, if even possible.
I’ve done some checking on other forums for this topic but it appears this revelation may be too new. Cdn, have you (or others) found any other research or trial testing for presence of the Integrin β8 on the cancer cell?
I will try to answer your question on integrin b(beta)8 – ITGB8. I am not sure ITGB8 is a cancer molecule. Integrin is an adhesion molecule between epithelial cells and the basement membrane of the bladder wall. The bladder wall is composed of epithelial layer/tissue (T0), basement membrane, connective tissue (T1) and muscle tissue (T2). Cancer stars in urothelial cells in epithelial tissue. The role of the epithelial tissue is to prevent urine to permeate through the bladder wall into inside our body. The epithelial tissue comprised of urothelial/epithelial cells consists of a singly layer of umbrella cells, 4-7 layers of intermediate cells and a single layer of basal cells. All those cells stick together to form a tissue and stick tight enough so urine will not go through. An adhesion molecules among urothelial cells are like E-cadherin and others. The basement membrane lay between basal cells which are the last cell layer (T0) of urothelial tissue and the connective tissue (T1). The role of the basement membrane is to glue urothelial tissue and the connective tissue. It is a complex layer and structure called extracellular matrix, which is made of collagens, Laminin, and other molecules. Laminin acts like an anchor to which Integrin of basal cells of urothelial tissue binds to so urothelial tissue stick to the basement membrane which is also stuck to the connect tissue. In this way, urothelial tissue will not come off as it needs to expand and contract when it needs to expand and contract in storing and voiding urine. Perhaps we can think of Integrin as a rope which ties urothelial cells to the basement membrane. In addition I understand that integrin participates in passing signals between molecules. Note that There are 26 kinds of integrins which consist of 18 alpha (a) integrins, ITGA1-18 and 8 beta (b) integrins, ITGB1-8. Integrin alpha and Integrin beta come in a fixed pair. ITGB8 pairs with ITGAV.
There are a few studies available on internet which support your premises
Integrin β8 facilitates tumor growth and drug resistance through a Y‐box binding protein 1‐dependent signaling pathway in bladder cancer – 2020 Univ of South China
- The elevated expression of integrin β8 was observed in highly malignant bladder tumor tissues from patients.
- Pharmacological targeting of integrin β8 by Arg‐Gly‐Asp‐Ser efficiently suppressed sustained growth and drug resistance in bladder cancer cells.
The study suggest the use of integrin B8 as a biomarker for identifying bladder. Note the study was mainly carries on labs, no clinical data.
Immunosuppressive Role of Integrin β8 in Recurrence After Bacillus Calmette–Guérin (BCG) Therapy for Non-Muscle Invasive Bladder Cancer -2025 Univ of Fukushima, Japan
- ITGB8 may contribute to post-BCG therapy recurrence of NMIBC by suppressing tumor immunity through the activation of TGF-β1. Evaluation of ITGB8 expression in preoperative NMIBC could potentially predict recurrence following intravesical BCG therapy. Note the clinical study was carried on only 13 patients.
You can find the link to the studies by google search those titles of studies.
Clinical trial
In 2019 Pfizer started a phase 1 clinical study on PF-06940434 (Integrin alpha-V/beta=8 Antagonist) in patients for various cancers including bladder cancer in patients with advanced or metastatic solid tumors.
Note that integrin alpha and beta comes in a pair. ITGB8 pairs with ITGAV.
This study indicates that ITGB8 combined with ITGAV act as cancer promoter. So the trial is to try to find out if PF-06940434 which inhibit ITGAV/ITGB8 will mitigate various cancer will work well.
According to Clicaltrial.gov data base, the trial was terminated.
“clinicaltrials.gov/study/NCT04152018”
- You must be logged in to reply to this topic.
