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unable to tolerate BCG treatments
Hello,
I have had high grade non-invasive bladder tumors and bladder surface cancer. which was successfully treated with TURB, BCG, BCG/interferon treatments. I then developed in situ cancer on my urethra/prostrate which was successfully removed via TURP. All biopsy and cytology studies show no cancer, but I am unable to tolerate the BCG/interferon treatments due to issues regarding frequency and urgency. I have tried pretty much every medication in the book for frequency prior to my diagnosis of bladder cancer, none of which did much good. I don’t want the cancer to come back but can not tolerate the BCG/interferon treatments anymore. Any suggestions on treatments to prevent the cancer from coming back?
Thanks
Dave -
13 Replies
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Just to add my 2 cents,,,,after about my 20th BCG treatment the nurse had a hard time inserting the catheter and had to get the Dr, to insert the Catheter. The Dr, said that because of the previous insertions my prostate was a bit swollen. They were using a #14 straight catheter and started using the Tieman catheter that Joea73 referenced – it is curved and has a rounded tip for easier insertion for males. BTW- the always used Lidocaine for all of my treatments.
In my case I had #24 BCG treatments and my prostate has never been the same – not that bad and not complaining – 5 years NED.
Peace
08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG
Void would be similar to urinating or peeing.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
My heart is with you dear Alan. Hope you hurt as little as possible!
Can you please reword ‘voids‘ ? (English is not my mother tongue language )
” The worst part for me was the next 1 or 2 voids after caths or scopes. “
Thank you dear joea73.
I am NOT discounting the pain/discomfort in your catheter insertion with my following comments as everyone is different. Different size prostate, urethra, sensitivity etc. At the same time using a smaller cath if it works makes sense. The way I got through 12 of these plus 15+ scopes was to semi take my mind elsewhere (I know easier said than done). Also, it is such a short duration passing through the prostate area….maybe 15-20 seconds that I kept telling myself this is a lot better than losing my bladder. The worst part for me was the next 1 or 2 voids after caths or scopes. THAT is painful.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Thank you for the updates and educating all of us. Also congrats on coming through BCG treatment with less pain this time.
Wikipedia says Lidocaine was discovered in 1945 and now it is included in WHO essential drug lists, also it is sold under different names. Esracain site also says it is Lidocaine Hydrochloride. So, it is likely Esracain is a trade name and Lidocaine is generic name.
In term of catheter, 8 is really small. They must have chosen it for you. The nurse manual of a Canadian hospital says #12 or #14 straight silicone catheter for females #12 or #14 Tieman catheter for males. But, European Association of Urology Nurse manual (EAUN15) for BCG instilment says to the use smallest possible catheter.
In regards to Chief nurse’ comment on Estacaine (Lidocaine) on its impact to BCG efficacy, it may be true that no large scale studies are done for Lidocaine to compare the BCG efficacy with and without Lidocaine. The referenced study in the recommendation of Society of Immunotherapy and Cancer, which Dr. Ashish Kamat – a world well known urologist of MD Andersons was involved in preparing the recommendation, was done in 1996 in Germany. The study tested 5 different lubricants, including Lidocaine and identified that several components including Lidocaine hydrochloride were responsible for the inhibition of BCG viability. Fluid recovered from the bladder after lubricant assisted catherization also showed a inhibitory effect. I do not have access to the quantitative results.
Accordingly, European Association of Urology Nurse manual 2015 edition says if possible choose a hydrophilic (self coated) catheter to reduce risk of discomfort, trauma and infection. In terms of lubricant, for non-hydrophilic catheters, 10-15ml of lubricant with lidocaine and chlorhexidine should be used. This does not significantly reduce the efficacy of BCG therapy.
Intravesical Administration of Therapeutic Medication for the Treatment of Bladder Cancer Jointly developed with the Society of Urologic Nurses and Associates (SUNA) manual by AUA says in Administrative Precautions states Lidocaine Jelly (2%) may be used. Some urologists prefer it not to be used with BCG, Mitomycin, Gemcitabine, or Docetaxel. Follow facilities guidelines regarding to use. ** it does not say why some urologists do not want to use lidocaine.
It seems that European Nurse manual and American Nurse manual are not fully consistent in terms of the use of lidocaine.
Also, it seems that the policy for using Lidocaine in BCG instilment is not fully consistent in what the urologic nurse manual says and Society of Immunotherapy and Cancer and Dr. Ashish Kamat is saying to bladder cancer patients. I think this reflects to patients commentating that some hospitals use Lidocaine always and some don’t. It is noted that some patients who have lidocaine always are posing that BCG has worked well resulted in NED several years. This tells that Lidocaine will not make all BCG bacteria inviable.
I am curious to know what is MD Anderson nurse practice manual in administering BCG.
https://nurses.uroweb.org/wp-content/uploads/EAUN15-Guideline-Intravesical-instillation.pdf page 34
https://www.auanet.org/guidelines/guidelines/intravesical-administration-of-therapeutic-medication Sec XI. Administrative Precautionbest
Apparently, Esracain gel injected in my BCG treatment is identical with Lidocaine*. and the catheter is 8.
*Chief nurse said that no problem of compromising the BCG effectiveness (by using Ezracain) are knownIn today’s treatment, the nurse waited 5-10 minutes after injected the Esracain and prevented it from going out ,and that seemed to have helped (less pain); I also took 400mg Nurofen, 45 min. before we started so that might have affected too.
Good health to all of you!
Thank you so much joea73 !!
Your kindness is heartwarming.
My next (4th) BCG is a bit too soon to allow changes, though I will try to figure what can be done.
Re: pain management on the insertion of the catheter
Hi Jnani
To manage the pain on the insertion of the catheter, I have noticed most patients are administered local anesthetic Lidocaine first.
It depends upon the hospital if Lidocaine is used as default or use it for only those patients with pain.Regarding the use of Lidocaine and lubricant’s, Society of Immunotherapy and Cancer dose not recommend the use of Lidocaine or use of excessive lubricants because the use of lidocaine or excessive lubricants during catheterization has been shown to have inhibitory effects on BCG viability Also, with the use of local anesthetic, patients may not be able to feel/report a potentially traumatic catheterization. I
Also, it seems that the experience of the nurse in administering makes difference. Some patients request smaller catheter to reduce the pain. Usually, the standard size of a catheter is 14F and some patient used 10F.
1. Ask for a nurse who had many years of experience in administering intravesical BCG.
2. See if they can use a catheter smaller in its diameter than 14F which is the standard catheter.
3 . If it still hurts and tropical anesthetic is to be used i.e. Lidocaine or lubricant, try not use too much as it will reduce BCG effectiveness.Incidentally, there are many important tips for BCG treatment are mentioned in the consensus report. For example, the report says it does not require to rotate every 15 minutes, and oral quinolones ( nor prior to BCG and not within 6 hours after BCG instilment) is recommended to reduce the side effects.
https://jitc.biomedcentral.com/articles/10.1186/s40425-017-0271-0
best
Dear Dave,
I have just joined this forum because the insertion of the catheter in BCG hurts. and I hope to learn anything that may decrease the pain. Hold on!“high grade non-invasive bladder tumors and bladder surface cancer” – – Same (T1)
Sounds like you have been busy figuring things out and have a plan. I have seen gemcitabine mentioned often among other agents. Plus, I am sure your team has chosen this one per their experience and your situation.
Let’s just trust this thing is already gone!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Thanks so much. Just had telephone appt with 2nd opinion Doctor from Lahey clinic. I just was lookin for options prior to appt so I could bring it up. He answered all my questions and gave me new information which was very helpful. At this point cystoscopy with biopsies and cytology studies every 3 months and ct every 6 months. Let the bladder heal from the BCG treatments. If the cancer comes back will try gemcitabine before removing the bladder
Dave,
Welcome to our world although none of us wish you have the need to be here!
While none of us are doctors, and not knowing all the details of your bladder cancer, there are many that have used different chemo agents in place of BCG. I am just not up to all of them as I only had to do BCG. Perhaps others will chime in with what they have used and why.
Assuming you are comfortable with how up to speed your medical team is on new agents, there have to be some options. At the same time, I encourage a second opinion at a leading-edge center or teaching hospital like MD Anderson in Houston, Cleveland Clinic, Northwestern in Chicago, Sloan Kettering etc could have ideas especially with so many other areas of your urinary tract involved.
Keep asking questions and someone may have other information.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.Sign In to reply.