I've been thinking about my PCa and have some questions - would be glad for any thought or input

[pjd55d]

Hello

I have been on this site for a couple of years - always interested in where men are on their journeys and what they are doing for treatments.

Diagnosed Feb 2017 - PSA 340 with mets Immediately started Lupron and bicalutamide . Oncologist - who I trust sent me to an Urologist who I did not like. After a year of having the feeling - in office visits - that I just wanted to slap the arrogant little prick, and experiencing a 12 core sample that was one of the most painful procedures I have ever had - just UGLY, I asked for a referral for a second opinion. Got one to an Oncologist at UofChicago - teacher - researcher - and had an immediate liking - just the style and approach I was used to - the listening - all good. He was more than willing to share his note with my primary care Dr as well as any and all care givers - and interested in what they were saying about my care. The Urologist refused to share his note and was not interested in other - even though he worked in the same Medical group. I switched to the Oncologist full time. He dismissed the bicalutamide, and has administered the Lupron every 3 months. I did go through a course in Oct 2018 of Provenge - an immunotherapy - which he believed helped. I have had

.005 and lower PSA for over the 2 years .

So my question: by using just an Oncologist - with excellent results - am I missing something by not going to a Urologist ? I don't think so but ... thinking.

Second

In January 2019, I presented with Congestive Heart Failure. There was no vascular or valve indications of why, and ended up with a pacemaker in May 2019.

Question: Did the Lupron cause this side effect? I have tried to find some writing/info on this issue and have come up pretty short.

Any thoughts or experiences that anyone might want to share would be appreciated.

P

[6357axbz]

To your first question I see very little, if any, reason for a urologist. They are not cancer specialists. Unless you have non-cancer related urological problems forget the urologist. I was originally diagnosed by my urologist but he was incompetent treating my cancer. That’s when I went to a major cancer center and have both a MO and a RO assigned. I think you will find many here with the same thoughts about urologists.

Can’t answer your second question.

[pjd55d in reply to 6357axbz]

thanks - also my feelings " why isn't an Oncologist treating my Cancer "

best of luck

[Tall_Allen]

"So my question: by using just an Oncologist - with excellent results - am I missing something by not going to a Urologist ? I don't think so but ... thinking."

I agree with you. Oncologists are specialists in maintaing life and QOL in me with incurable PC. There are oncologists who specialize in urological oncology, like Maha Hussain or Alicia Morgans at Northwestern. Urologists are specialists in urological problems (which it doesn't seem like you have). Your oncologist will bring in specialists in other disciplines as need arises.

"Question: Did the Lupron cause this side effect? I have tried to find some writing/info on this issue and have come up pretty short."

Impossible to say, but Firmagon (degarelix) has a lower incidence of cardiac side effects. Maybe discuss switching.

urotoday.com/conference-hig...

ascopubs.org/doi/abs/10.120...

[pjd55d in reply to Tall_Allen]

thanks so much

discuss yes - thinking - maybe I have too much time on my hands .. ya think ?

Best

[Tall_Allen in reply to pjd55d]

Me too. I used to spend a lot of time preparing for my class, and in going along on visits to doctors, but I can't do any of that now

[Magnus1964]

Don't feel bad about getting rid of your Urologist I have fired more than one doctor during this journey.

[maley2711]

P -

May I ask....did you have any primary treatment.....surgery or radiation.....or did the oncologist decide those would be of little value. It sounds as though metastasis was diagnosed?

[pjd55d in reply to maley2711]

yes there was metastasis - several spots on bones - which is how they discovered the prostate cancer as the source. She sports med guy was looking for hip pain issues and ordered an MRI where he found the mets and sent me to the Oncologist. It was also why they went right to Lupron and bicalutamide - not a candidate for radiation or surgery

[CHPA]

The doctor I saw was a urological oncologist. Find a doctor you are comfortable with but don’t prioritize nice over skilled.

[pjd55d]

thanks

my current one is nice and SMART and SKILLED

I have had enough medical issues in my life to know a good one who is interested in my health and well being and one who is in it for the $$$$

pretty lucky - the Urologist stood put from quality of professionalism I am used to

thanks again

P

[MarkBC]

My cancer is stable and I'm still castrate sensitive. I see my oncologist once every four months. I see my urologist once every three months. He gives me the ADT injection. He also monitors my difficulty with urination. Fortunately, those two work very well together. I like them and have complete confidence in them.

My family doctor monitors my mental and general health including potential cardiac issues.

[dadzone43]

just Google "Lupron and Congestive Heart Failure." You will find lots of information about the association between the two drugs.

Unless you are seeking surgery, you do not need a urologist. Especially one who is an arrogant prick. No one needs an arrogant prick. Although as a patient I would welcome an arrogant prick between my legs.