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BCG treatments for my Dad??, 86yo, frail and bed bound
:- My father’s urologist has recommended a series of six weekly BCG treatments. He was first diagnosed with non-invasive, low-grade papillary tcc in aug., 2006. Follow-up cystoscopy in Nov. 2007 revealed recurrent disease. The second tur thankfully again revealed non-invasive low-grade papillary tcc, although he now has multiple sites within the bladder. His primary caregiver is my 80 yo mother who is in good health. My Dad is bed bound, getting out of bed only to use the bed side commode ( with difficulty). He has been pain free through all of this. He is very frail and has dementia (knows who we are but lives very much in the moment with short term memory loss)as well as some lung issues. He is however, happy and content with no depression or pain. My mother and I are so torn about whether or not to pursue the BCG.
It may extend his life but destroy the quality of his life. Any thoughts or experiences anyone can share would be greatly appreciated. Thank you. -
11 Replies
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Karen,
I am sorry to hear of your fathers situation, my father had open heart at the age of 86, he had every complication possible only to die 5 months later with all the scars of his operation. He fought a staff infection, blood clots, c-dif, now I wish he would have listened to us and just went on blood thinners or something less invasive as before all this he at least was mobile, lucid, and a whole human being. My advice is don’t give him anything that will make him worse, if he is happy with his life as it is….let him live without any interuption from more medical intervention. That was my experience. Bless you and your family in this holiday season. Ginger Beane -
rosemary,
thank you so much for “jumping in”. I appreciate all feedback and help. You have all been wonderful and a great resource. I did ask Dr Lamm my question. I’ll keep
you updated. Thank you.
karen -
Karen,
I know that you addressed your question to Wendy, but meanwhile, I hope you don’t mind me jumping in with my opinion again…
Having gone through BCG myself, I can’t help but feel a little emotional about the idea of inflicting this possibly harsh treatment on your father, not to mention the hardship on your Mother, when it might not be of benefit. I like the idea of having faith in our doctors, but in this instance, I really think you might want a second opinion…
I personally had a strong and radical response to BCG. At the very least, your father will probably suffer the discomfort of extreme burning on urination (like voiding razor blades) and possibly mild, flu like symptoms.
I tried getting a definitive answer from the FAQ section of Dr. Lamms’ website.
The search result that I got does not fit your father’s situation exactly, but it does support Wendy’s information concerning effectiveness of BCG treatments in patients over the age of 80.If you E Mail Dr. Lamm with a question about this, he will reply. He is very kind and an expert in the field of Bladder Cancer and BCG treatments.
My dad, 86 years old and in good health, was diagnosed two weeks ago with bladder cancer, stage T2a. What treatment options are available for my dad, keeping in mind his age and good physical conditions? Thanks
Age certainly does become a major consideration when selecting treatment for someone aged 86….. Unfortunately, BCG has been recently found to be much less effective in patients over the age of 80 …
Here is Dr. Lamm’s website opened to the page where you may pose your question…
http://www.bcgoncology.com/drlamm/askdrlamm.html
Best regards,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
:- Hi Wendy,
Thanks for all the good info. I found the research on patients over 80 and BCG treatments. Was O’Donnell also the researcher behind the bcg not being the first line treatment for papillary tcc? I’m having trouble locating that article. I have more information on my fathers pathology report. It is staged as TaG1 papillary tcc, although it is his second recurrence ( and this time with multiple sites vs one site the first time)His operative report reads that there were multiple tumors to or blocking the bladder neck. Others were on the dome base lateral walls bilaterally. The largest tumor was greater than 4cm, which I understand is quite large. He went 14 months between cystos and turbt because of logistical and transport issues. My mother is not in favor of the BCG treatments. We had a good year in between turbt’s and if we could get that much again it would be great. He is so frail and fragile. I’m just trying to gather up all the information I can. The uro will be pushing for the BCG. In his mind, it’s a no brainer. Thanks so much for any feedback.
wishing you and your family good health in the new year.
Karen
Hi,
If your father is over age 80, the newest evidence says that BCG is not as effective for that population; it is also known that BCG isn’t helpful for low grade papillary TCC, and is more useful for high grade tumors and CIS- carcinoma in situ. Did he have those? Otherwise…
Maybe your father’s doctor is old fashioned, not up on the latest research. Or else he might have done the latest recommendation of ONE shot of a chemo in the bladder post-TUR/resection. My second cousin is 89, and she did that (Mitomycin post TUR), it hurt for a day or two but did keep her clear for a year or more. She could not tolerate BCG, and that was before that info about those over 80 not responding very well to BCG anyway.
If you need references, it was Michael O’Donnell who published that research.
Hard choices..it’s about quality, though.
Wishing you and your family well.
Wendy
Thank you all so much for your input. I will be placing a call to the uro next week. The pathology report was only as specific as I previously stated, non-invasive, low-grade papillary tcc. No other staging, so that will be my first question to the uro. Also, my father occasionally has “accidents” now, mainly because he is unable to get out of bed quickly enough. I am about the toxicity of the bcg and possible exposure to my mother. The web sites have also been extremely helpful. I’ll update after I talk to the uro. thanks to all………….
Kjab,
Here is a link to information on Ta grade 1 on the Web Café. I think I am understanding that is what you are dealing with.
http://blcwebcafe.org/superficialblca.asp
I am dealing with elder care here and a lot of the same issues you are but with different diseases. Their doctor recently made the comment that he did not like to run tests unless he knew what he was going to do with the results. We were grappling with doing a colonoscopy on someone who could not really help with the prep for it nor understand why it was being done. I gained a lot of respect for him as he explained that he based all his decisions in cases like this on asking himself three questions. Is it safe for them? Doses it provide comfort? Dose it preserve their dignity? Even with that it is not an easy question.
The suggestion of a second opinion is not a bad one. But if you do go forward with the BCG would it be possible to have him admitted so that professionals will be handling the hours following installation?Chin up and straight forward
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Is this cancer very aggressive? What else is the Dr. saying? It seems with your mother being the primary caregiver, and their age, that if he were to do treatments he should at least be at a facility to complete them. With dementia or Alzheimer’s, I can’t imagine how to make him understand that he had to “Hold it” for 2 hrs. and with a bedside commode yikes…this is really toxic stuff, seems like a lot to ask for both of your parents…If he is pain free, and happy…that’s all you can ever want for a loved one, and if he is already bedridden your mother has enough on her plate too.
My thoughts are with you.
Karen
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
If I were your Dad I would not do the treatments. I bet if he could let you know he would say the same thing, Why put the nice old guy thru the crap. Let him be comfortible as possible. Just my thoughts. Soory if I sound crull. Don
Hanging in there!
BTW,
I think it might not be a bad idea at all to get a second opinion on the treatment options for your Dad.
Just my opinion.
Regards,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Hey Kjab,
Gee, what a tough situation for your Dad and your family.
The thing about BCG is, that he might not have bad side effects, in fact, the first two or three treatments are a total piece of cake.
About the 4th treatment, the situation begins to change a little. The pain and some bleeding may occur.
During the treatment, your Dad is suppose to hold the urine for about 2 hours and your Dad(or Mom) will have to pour bleach in the toilet every time he voids. Your Mom or the Caretaker should not come in contact with his urine for 6 hours.
I think I see where the Uro is going with this. Your Dad is probably too old for surgery, but the disease needs to be treated.
This is a tough choice.
BTW, do you know what was the stage and grade of the tumor?
Please feel free to come and talk this situation out loud with us (so to speak.)
Your new friend,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006Sign In to reply.
