Mom just diagnosed and already in poor health

10 years 10 months ago #32737 by BarbN
Hi all - hoping to find some answers or more information to help mom make the right decision. We are very close and she depends on me to help her understand and choose.

We just got the path report back from urologist and primary care doc. 6/22/2010

diagnosis: ...high grade urothelial carcinoma with squamous differentiation and ulceration; invasion of detrusor muscle

I have done a bit of reseach in the past few days and none of it looks good for her.

She is not a candidate for surgery due to her other health issues. In fact both primary doc (who I have a lot of respect for) and urologist do not think she would fair well after surgery.
She is scheduled for a bone scan Friday 6/25 and appt with oncologist 6/28.

Seems all the sites I look at recommend surgery.


Mom is 74yo with pacemaker, parkinsons, cerebral anerysms (some treated some untreated - she is no longer candidate for surgery for anaerysms either)


Should we seek second opinion? Do we go for quality of life?
this is so hard. I sit here crying as I write so please excuse typos as it is a little blurry right now.

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10 years 10 months ago #32738 by Patricia
Replied by Patricia on topic Mom just diagnosed and already in poor health
Barb..first of all where are you located?
There are a few expert Uro/surgeons who have dealt with the older and more complicated patient. Dr. Harry Herr from Memorial Sloan...one of the tops ..might be one to consult.
Repeat TURBT can provide palliation, as well as a survival advantage in select individuals. Herr reported a 10-year disease-specific survival rate of 76% in patients receiving TURBT as definitive therapy. This was comparable to the survival rate in a similar cohort of patients undergoing immediate radical cystectomy.[10] Although this study was not designed to assess TURBT as a substitute for radical cystectomy, it demonstrates a better than expected survival for select patients who are ineligible for, or refuse, radical surgery.
He's a master with the scalpel and while this may not cure her it may give her more time. And i do mean getting a very specialized Top Surgeon at a top cancer/uro center.
Pat

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10 years 10 months ago - 10 years 10 months ago #32739 by BarbN
We Live just outside of Boston,MA. Part of problem... mom is in nursing home recovering from recent heart attack.

The uro who did the biopsy said he got it all but i don't know how he could be sure of that???

Are there any major centers in Boston area? She can't travel too far right now.

Barb

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10 years 10 months ago #32741 by Patricia
Replied by Patricia on topic Mom just diagnosed and already in poor health
Barb...he may well have got it all but its pretty standard to do a repeat TURB in 3 to 6 weeks after the first just to make sure nothing seeded and all margins gotten. I suppose if you must stay in Boston..that Mass General would be the place to get the repeat TURB..Dr. Olumi
www.massgeneral.org/urology/doctors/doctor.aspx?id=17314
Dr. McGovern
www.mgh.harvard.edu/urology/doctors/doctor.aspx?id=16733
I hope Cynthia chimes in here as she is familiar with Mass General better than i am.
pat

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10 years 10 months ago - 10 years 10 months ago #32760 by Cynthia
Replied by Cynthia on topic Mom just diagnosed and already in poor health
Pat is right I was a part of the bladder sparing protocol at MGH. Following this post is the link to the Claire & John Bertucci Center for Genitourinary Cancers and call them and ask how you could have a review of your mother’s case by their multi disciplinary team.

With patients that cannot withstand surgery or chemotherapy I have read research studies that they have extended life using TURBT and in some cases radiation.

Let us know what they decide to do so we can know for the next person that comes here with a like question.

If for some reason this does not work for you let us know and I will give you some other choices.

www.mgh.harvard.edu/cancer/services/treatmentprograms.aspx?id=1198

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

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10 years 10 months ago #32769 by BarbN
thank you both for the information. We just got back from bone scan and I had a long talk with mom explaning what you both said. She has not said no so I will call and request a consult.
will let you know how we make out.
thanks again and I am so glad I found this site.

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