-
82-year-old mother with CIS and question BCG
My 82-yo mother has just been diagnosed with CIS, following cancer cells showing up in urine but no lesion viewed during cystoscope, scraping and wash. This followed 4 years cancer free after TURBT for aggressive transitional cell cancer. Dr is recommending 6 wks of BCG. I have researched both her cancer and treatments in great detail. I fear she is too frail to endure the treatment (she had very difficult time following the recent cystoscope surgery, pain was unbearable afterwards and she ended up hospitalized for many days). After helping my father recover from squamous cell cancer of the salivary gland surgery and radiation, she is just exhausted and not wanting to do anything further that will cause her suffering. Can you please offer some advice or opinions? If she chooses no treatment, can you offer information on how quickly the CIS spreads/life expectancy? Thank you so very much.
-
8 Replies
-
Thank you so much for responding. The travel and voiding issue will definitely be discussed as Mother lives 45 minutes from the dr. She has decided to try the treatments and we pray she can handle them. Thank you for your support. My father is doing reasonably well. The radiation zapped him of energy and any taste buds. He says he wouldn’t have gone through it if he had known how bad it would be. He has an upcoming PET scan and we hope he gets an all clear. So nice of you to inquire about my father. Take good care.
-
Dear Gibsongal57,
The forum is a great place for caregivers and their loved ones who are members of the BC club. I’m sorry that you are dealing with cancer concerns of both your parents and hope your father’s recovery is going well.
My husband was diagnosed with CIS and has received BCG treatments. It’s a 2 hour drive to the doctor’s. He generally receives BCG and we begin our trip home before he has voided the BCG.
Typically there is an interval of time after receiving BCG when voided urine needs to be treated with bleach. His strategy is to use a travel urinal which is later emptied and bleached at home.
Depending on travel time, you might want to strategize on how a travel rest stop would be handled for your Mom.
The forum is here for you. Stay strong and keep posting.
Husband’s journey:
01/2015 1st cystoscopy
03&04/2015 TURBTs-CIS
07/2015 Finished BCGx6
08/2015 biopsy-BENIGN!
10/2015 Finished BCGx3
12/2015 Cysto, redness
01/2016 TURBT, Benign
04/2016 Cysto
05/2016 Finished BCGx3
07&11/2016 Cysto’s
1/2017 Finished BCGx3
2/2017 Cysto, redness
3/2017 TURBT, Cysto due 9/2017
Thank you, Jack, for responding. We will do our best to make sure her dr and nurses consider her age/frailty and to be prepared to offer her side effect relief should she need it. We are so thankful for this forum, as it has helped to educate us as well as confirm the best course of action. The best to you in your struggle with this cancer.
Thank you so much for responding. We will address her issues with her dr and nurses in hopes that they will be prepared to help her with possible side effects. I have found her doctors are very reluctant to prescribe pain relievers that really help, possibly due to her age, and I feel it would be a comfort to her if she knew she had good pain relief should she need it.
Yes Sara Anne the CIS was found on pathology after the recent cystoscope with TURB, so it was confirmed by tissue evaluation. Thank you for responding and I believe my mother is leaning towards getting the treatment.
Did I understand the situation correctly….there were abnormal cells in the urine, but CIS was NOT found during the TURB (“scraping/biopsy”)?
IF THIS IS THE CASE, I would suggest that you seek a second opinion at a place that sees a LOT of bladder cancer cases. Urine cytology tests are notorious for being VERY sensitive…that is that they do find cancer, but they also “find” it when it is not there. They usually indicate that further tests, for example, the TURB be done to confirm that cancer is indeed there.If CIS is present, it is a high grade cancer and needs treatment. But especially in your mother’s case you would want to be sure that it is present. So, again, if the only diagnostic test that was positive was urine cytology, I would urge you to get a second opinion ASAP. If CIS showed up in any other way, from a tissue biopsy, than yes, BCG is the only option.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
I would try to speak with your mother·s medical team, as to how they assess her ability to cope with the BCG treatments. If she had surgery when CIS was suspected, they probably took a series of random biopsies from the bladder lining, which would be much more likely to cause a considerable amount of pain, than with a surgery to remove a single visible tumour. From my own experience, the BCG treatment after effects were fairly shortlived, and the pain was manageable and certainly nowhere near the level of pain following the surgery .If they are reccommending treatment, presumably they think Mum will be able to cope. It would probably help if she knows that the after effects are usually not too bad, as the fear of pain is usually worse than what it actually turns out to be.
Let us know how things go, and wish her well,
Diane
Thanks for being there for your mother.
You really need a solid conversation with her doctor, and to bring quality of current life into the conversation. If you do choose to try BCG treatment, it seems that you need her care team to be ready to act to prevent discomfort or distress.
In my experience, and from the experiences of others, the bodily effects of BCG are highly individual. Some report no discomfort while others, including me, have major pain that can last a couple of days. Everyone seems to react differently.
That said, the dosage of BCG can be reduced down to one-third or one-tenth, according to various reliable sources. Most if not nearly all sources state there is no reduction in benefit from a reduced dose, while sources differ on the question of reduction of side effects. Talk to the doctor.
Other treatments may be available, may have less expected side effects. Again talk to the doc.
CIS is considered to have the ability to spread quickly, but again, it depends on the individual. I have CIS and would love to find a simple answer to that question.
Hopefully her care team can address her comfort as a first priority and design a treatment plan that is acceptable.
Best
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021Sign In to reply.
