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Dec 2019
Radiation with Chemotherapy, followed by another course of Chemotherapy:
A bladder preservation strategy:My previous posts (see above) describe my bladder cancer journey from the stage of when I was first informed that I had recurrent tumours, and that one was muscle invasive (Sept 2016).
Good news! My recent PET scan and cystoscopy in early December 2019 were both clear. It is now about 3 years since I first started my Chemo/radiation treatments. While I am still on a 6-month follow-up schedule, that is a lot less hospital visits that when I first started on this journey. My bladder is still intact, and the “plumbing” functions are normal. I am most grateful!!
As I have written previously, very few BCC posts deal with bladder preservation (trimodal) strategies. I am not a doctor, I do not really know why the doctors suggested that I try chemo/radiation, nor do I know the selection criteria. But I do know that at least so far, this has worked for me. So hopefully my story will lead others to at least ask their doctors about this option.
Hello Derek,
Sorry for your experience. My father went the surgery route and my mother went the chemoradiation route for MIBC.
My mother is now dealing with radiation cystitis. I am wondering if there is any relief for this.
She had a clean cytology and will have a cystoscopy next month. She is unfortunately also dealing with colon and breast cancer. The latest radiation in the pelvis seems to have triggered more blood in the urine.
Please let me know as any information would be helpful.
Thanks!
Caroline
Hi Derek
When I had my RC in 2016 I think bladder preservation strategies were pretty new and there wasn’t a lot of in the literature to make doctors comfortable using them.
I found this criteria for selection in an article from 2018;
“The ideal candidates for trimodal therapy include those with (i) small solitary tumors, (ii) complete TURBT, (iii) early clinical stage T2-T3a, (iv) no concomitant CIS, and (v) no hydronephrosis. With these strict criteria, only 6-19% of patients with MIBC fit these criteria. ”
An article from 2020 says:
“The National Comprehensive Cancer Network (NCCN) recommends bladder preservation over RC be reserved for patients whose tumors are small and solitary, lack lymph node metastases, lack carcinoma in situ (CIS), are without tumor-related hydronephrosis, and have favorable baseline bladder function”
I suppose they have to think you would do well undertaking the chemo and radiation treatments as well. In most of what I have read it seems the outcomes are equally successful for either treatment so definitely worth asking about for anyone considering surgery.
Cheers
Hello Caroline,
I had radiation cystitis Sept 2018,( my radiation finished January 2017). I was absolutely shocked to see that my urine was almost just blood. And of course I thought that my bladder cancer had come back. I did an extensive Google search, and along with my urologist telling me that I have bladder scaring from the radiation, I persuaded myself that the cause was radiation cystitis. I read that this is one of the side effects of radiation and can occur years after the radiation treatment. Fortunately, I was scheduled to have a cystoscopy the following week and the doctor didn’t seem too concerned. I don’t remember the exact timing but the bleeding continued and at times very heavy, for about 10 days. Since then, I have had not had a recurrence.
My case of radiation cystitis seems to have been mild and resolved itself over a very short time period. There are treatments for more severe cases but that is something for your doctor to determine. Certainly if there are signs of infection, you should try to contact him immediately.
I act as a Patient Support Volunteer for BCC, and get calls mostly about tri-modial therapy for bladder cancer. Sometimes it helps to talk to someone who is not a family member but who has gone through the procedure.
If this is of interest to you, please contact BCC and ask to be referred to me (the official procedural route) or send me an email.
I hope this is helpful as I know that it is a stressful situation.
…derek
January 8 2021
Radiation with Chemotherapy, followed by another course of Chemotherapy: A bladder preservation strategy:
My previous posts describe my bladder cancer journey from the stage of when I was first informed that I had recurrent tumours, and that one was muscle invasive (Sept 2016).
Please see pages 1 & 2: “Radiation with Chemotherapy – a bladder preservation strategy” by DerekA
Another year of good news! A CT scan in June, a cyscostopy in September and a PET scan in December were all clear. I am now entering year 5 since my Chemo/Radiation treatments began in December 2016. My bladder is still intact, and my “plumbing” functions are completely normal. I am most grateful!!
As I have written previously, very few BCC posts deal with bladder preservation (trimodal) strategies. I am not a doctor, I do not really know why the doctors suggested that I try chemo/radiation, nor do I know the selection criteria. But I do know that at least so far, this has worked for me. So hopefully my story will lead others to at least ask their doctors about this option.
Hi Derek,
I’ve read your experience with much interest as there appears to be many similarities between my recent diagnosis and your 2016 muscle invasive diagnosis.
Similar to you, and until my recent diagnosis of T2HG muscle invasive bladder cancer, I have been very healthy with no other medical complications. I’m 66 years old and don’t rely on any medications to remain active. I go on long hikes and walks and skiing would have been part of my winter activity if not for the Covid-19 lockdown restrictions here in Ontario.
I’m reaching out to you as there are very few forum posts on bladder cancer preservation strategies. If you don’t mind, I would like to get a few more details to determine how similar our situations may actually be.
All my scans (CT, Bone, etc.) have come back clean and suggest that my cancer has not spread anywhere else, however the size of the tumour removed during my TURBT was rather large (6 cm) and the pathology report denoted evidence of carcinoma in situ (or Cis) although no visual evidence of Cis was apparent during the TURBT.
Being diagnosed as T2HG would generally suggest radical cystectomy (as you originally expected for yourself) as the logical treatment option. However your doctors saw something about your situation that gave them pause to believe that preservation was still a viable option.
I’m thinking that your tumour may have been less than 3 cm and that your pathology report may not have exhibited any evidence of Cis (which I am being led to believe would make for a better candidate). If you would confirm this for me, it would really help me in determining whether preservation may still be an option worth exploring for me.
Thank you for sharing your experiences.
Hi Scott,
Sorry to hear that you are in somewhat the same situation that I was in 5 years ago. It is a tough time!
Below is data from the 3 TURBS that I have had:
April 6 2016: NMIBC – Specimen A: Base of Bladder, superficial tumour. SCO An accumulation of polypoid soft tissue measuring 1.0cm x 1.0cm in aggregate.
Specimen B: Deep, 2.5cm x 1.15cm
Sept 2016: MIBC – A: Left Lateral trigon superficial and deep. 1.5cm x 1.0cm. B: 0.8cm x 0.7cm
Dec/Jan 2016/2017 Chemo/radiation therapy
June 9, 2017: After Chemo/radiation: Tissue fragments: 0.9cm x 0.7cm x 0.3cm
I really can’t give you a medical comment re the size of your tumour, the “carcinoma in situ”, versus my situation. However, my impression is that some doctors believe that removing the bladder is the “gold standard” for MIBC, whereas other doctors (still a minority), are willing to look at the possibility of bladder preservation. My first doctor at a smaller hospital, would have taken my bladder out after I had my MIBC TURBT, however (luckily) he didn’t have the certification to do the operation. He referred me to a surgeon at the McGill Royal Victoria General Hospital and that doctor suggested that I consider bladder preservation.
If you have major doubts, remember that you can always get a second opinion.
I am available for a phone call if you wanted to discuss this further. You can contact me through BCC or send me an email.
All the best
Derek
Feb 7 2022
Radiation with Chemotherapy, followed by another course of Chemotherapy: A bladder preservation strategy:
(My previous posts describe my bladder cancer journey from the stage of when I was first informed that I had recurrent tumours, and that one was muscle invasive (Sept 2016). Please see pages 1 & 2: “Radiation with Chemotherapy – A Bladder Preservation Strategy” by DerekA)
Another year of good news! Cystoscopies and scans were all clear. It is now 5 years since my Chemo/Radiation treatments ended. I had thought that 5 years was supposedly a milestone for being cancer free. However, both my oncologist and surgeon want to keep me under a 6-month surveillance program for quite a while longer as my original diagnoses was deemed a very aggressive type of cancer. So going forward, my schedule is: cystoscopies and “bloods” every 6 months, and a scan annually. From that very dark period when I was first told that I had bladder cancer, to where I am now, I am so grateful! My bladder is still intact, my “plumbing” functions work just fine, and my life is back to normal.
As I have written previously, very few BCC posts deal with bladder preservation (trimodal) strategies. So, I am writing this blog in the hope that my experiences will be helpful to those who unfortunately are just starting this bladder cancer journey. I am not a doctor, and I am not trying to give specific medical advice. But I do know that potential candidates have to be carefully screened and then medically selected. However, some doctors are definitely not predisposed towards bladder preservation strategies. In some cases, another doctor’s opinion might be warranted.
Hello DerekA,
So glad to hear that you continue to have good news to share with us 5 years later! Fantastic! I was wondering how you’re coping with the Chemo/Radiation treatments 5 years later. I have heard that the side effects are quite often difficult and so curious to know if you had to deal with any of that.
Thank you and keep well!
Hi Derek ;
I remember reading about your post on all what you went through with treatments and such. And like I previously said such helpful information.Thanks for the update with the great news! This is so inspiring. Cheers- Tana
Hello Nightingale,
I haven’t had any serious side effects from the chemo/radiation in the past 5 years except for a few short term cases of radiation cystitis. Scary at the time but went away on its own.
Take care,
Derek
Hi Derek
I have been diagnosed with T2 MIBC after Turbt in November with CT and bone scan completed end of December after which the the urologist contacted me mid January to give an all clear. I was referred to the top urologist in the robotic surgery dept. at the beginning of Feb. where cystectomy and bladder preservation was discussed. I preferred the BP option and he thought that could be a viable option so has referred me to meet with the oncologist Feb. 18. I’m not sure what awaits me at the meeting but I would think, like you, I will have chemoradiation treatment. After reading your great detailed posts I would appreciate any thoughts about chemoradiation effects or any other information you might deem helpful. By the way, I am 72, physically fit with no other health issues.
Brian
Hello Brian,
Sorry to hear that you have T2 MIBC. I remember well my shock/worry/uncertainty when the surgeon told me that my T1 had progressed to T2.
I would be happy to talk to you about my experiences, and try to answer any questions that you might have. BCC likes to have Peer Support inquiries go thought their system.
“https://bladdercancercanada.org/en/get-support/” or phone at 1 866 674 8889. Maybe you can try to register through them and ask to speak to me.
However if you can’t get through, I sympathize with what seems to be the endless wait times and stress that we all experience after being diagnosed with bladder cancer. So alternatively, sent me an email at “emailderek1941@yahoo.ca” with your phone number and when you are available for my call.
Take care
derek
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