Recently diagnosed with prostate cancer: What questions to ask docs?

Posted by solesky @solesky, Jun 28 7:14pm

I was recently diagnosed with prostate cancer, I have a Gleason score of 7 in 3 areas and a 4 in another spot, I'm scheduled to meet my new oncologist, surgeon, and hormone Dr early next week to discuss my options. What I got from my talk with my urologist was because of my age, 73, I'm at the in between age of what option for me is best. He basically said I could have radiation treatment or surgery to remove my prostate and hopefully be cancer free after surgery. So many side effects and things to deal with after surgery, but I'm leaning towards the surgery just to be done with the cancer. but honestly, I know absolutely nothing about this. Got any questions I can ask these Dr's during my meeting? I'm pretty much scared to death of this whole thing. Help.

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All great input! The only thing that I would add is to make sure you also focus on nutrition and exercise. It’s a shock at first to hear the big C word but you are more than that. A good solid workout schedule can do you a lot of good, both physically and mentally. Blessings

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Solesky, your post has generated so much good advise so I will be brief. I was diagnosed 3 years ago, at 74, with Gleason 9 PC. I am planning and hoping on being around until 94 and I had some men in my family who lived that long. I had surgery with 6 months of ADT and Erleada before and after surgery. Radiation after surgery is often a good option if the cancer returns, but radiation first usually removes the secondary treatment of surgery. 3 years after beginning treatment my PSA is .01 and my UCLA doctors check me every 3 months. Good luck!

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@grandpun

Hi "solesky", Welcome to this most undesirable group and "brotherhood".
Given all the good comments above I'll just hit some high points. Many of which I've learned from this group.
We're similar age at diagnosis; mine at 75 (now 77). Doc said either radiation or removal. I chose removal hoping for one and done because I didn't relish hormone therapy.
Nope, some PC escaped so I did 2-years of hormones (Lupron). Yuck! but way better than PC.
Our job is to study vastly; learn lots; get to know yourself and the cancer you have (tests, lots of them)
Consider and plan for your life expectancy. My family all lived to near or in 90's. And that's my plan! And the PC and age may slow me down but I'm darned determined to get the most out of it.
Study and research some more and grill your doctors (multiple docs, likely) with questions.
And keep a fighting spirit throughout.
We're with you all the way so stay in touch here.
God Speed my Brother!
GranPun

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Hi Grandpa....I have an idea, we have a Hubble space telescope and a Webb space telescope...one can do a much better job than the other. We also have a generic PET scan machine that can only see so much...then we have a QUADRA Pet/CT that can do so much more and see the cancer cells other PET scan machines can not see. So in the majority of cases we are treating cancer that s not there cuz we cant see it so we shoot anyway with Radiation or hormone treatments ADT. It would be a lot nicer to see what were shooting at instead of guess work....don t you agree? The cancer could be in remission yet were still going after it when its hibernating. Makes no sense. Any opinions on this thought process???? Bruce

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Thanks for your thoughts and ideas. Yes, if PC is 'hibernating" or in 'remission' there may be no need for continuing treatment. I think that's my situation now after RALP and Lupron hormone. So I'm just cruising and in good shape so far.
And getting the most detailed test results is important.
It's still and always an individual's situation. In my case (which is not a broad diagnosis) we knew the PC had escaped by knowing there was/is a spot on a rib. The surgery got the "home base" (my view of it) of PC and Lupron treated the spot and chance any was missed in the margins of surgery.
Now PSA is "nil" and if it rises then I guess the whole cycle of tests and decisions begins again.
Thanks again. Your comments let me kind of review where I'm at and what are the possibilities for my future.
Be well and stay vigilant.

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@kujhawk1978

So in part, the answer may lie in other clinical data...

You've given the biopsy piece, other clinical data which may be useful for members of this forum, you and your medical team:

Co-morbidities..even without treatment, it could be 8-10 years before serious problems with your PCa present themselves, will you be here?
PSA results - useful for calculating PSA doubling time and velocity
Imaging - Either the tried, not necessarily true, but what some insurance companies require - MRI and CT or one of the recent ones, a PSMA PET.

You say so many side effects, no matter what treatment you decide on, there will be side effects. In part, the experience of your team, whether radiation or surgery, play a role. When I had surgery in 2014, no incontinence, it was nerve sparing, regained erectile function in roughly 12 months. I have three different radiation treatments (see my clinical history, attached), SRT to the prostate bed, WPLN and SBRT. Zero side effects. Being a member of my medical team is a privilege, not a right, you need to know your stuff - "As a member of my medical team, you should have a thorough knowledge of my cancer and of the latest developments in research, and be ready to formulate a plan of attack."

As others have said, with surgery, side effects are generally immediate and gradually get better though many on this and other forums express great dissatisfaction with ED results. Radiation to the prostate and prostate bad can "fry" the nerves and you wind up with ED, just as with surgery.

You say you just want to "get rid of the cancer..," MSCKCC has nomograms for calculating the risk of recurrence after surgery, mine was 30%, you guessed it, winner, winner...Here's the link - https://www.mskcc.org/nomograms/prostate

I would begin with reviewing the NCCN Guidelines for patients - https://www.nccn.org/guidelines/category_1, that would be my starting point for discussion with my medical team. The NCCN also offers free resources for patients, called the NCCN Guidelines for Patients, which provide expert information about cancer treatment options. These resources are presented in plain language with visuals, charts, and definitions to help people with cancer and their caregivers discuss treatment options with their clinicians.

There are other resources, Prostate Cancer Foundation has a patient guide - https://www.pcf.org/guide/

I would start learning and use the terminology, when you say "hormone doctor..." that leaves us pondering who you are getting advice from. Generally the prostate cancer team is multi-disciplinary, urologist, often the surgeon, the radiation oncologist and a medical oncologist., add a cardiologist, dietitian,...Any of these three can prescribe hormone treatment, this last go round my radiation oncologist prescribed my Orgovyx.

There is "good" news...you have lots of choices. That is also not so "good" news as it may make decision making "difficult." Examples include doublet or triplet therapy - https://dailynews.ascopubs.org/do/would-you-use-doublet-therapy-and-not-triplet-therapy-patient-newly-diagnosed-mhspc. Why combination therapy - "Why combination therapy - heterogeneity and evolvability, via genetic or nongenetic mechanisms, are two of the greatest obstacles to the successful treatment of cancers..."

Here's one of my rules which has served me well these 10+ years after my urologist said "Kevin, that's a pretty aggressive cancer..." when reviewing my biopsy results:

"Walk in the door ready to start the conversation at a different level. I don’t have to spend time talking about the basics, things like Gleason grade and clinical stage and what they mean. I already know. I can have an intelligent discussion about the merits of a particularly treatment for my cancer, my likelihood of being cured, and risk of side effects."

Members of this forum can provide their thoughts based on their experience, but your cancer is not ours. My advice - Consider the age of any treatment statistics you find. New advances quickly make them obsolete. Be careful about applying statistics to your own situation. You are an individual, not a statistic.

Kevin

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Excellent post.

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@trusam1

I started from the same place - age 73 @ diagnosis, Gleason 7 on biopsy. The only thing I"ll add to all the excellent advice here...if you have a partner, make sure they are a full participant in the evaluation and treatment decisions you are about to go through. As my wife said, after hearing about erectile dysfunction, "It's my penis, too!"

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Your wife is awesome! What great support!

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@stevecando54

Sorry you are here but there are plenty of people here who will give you support. I went to get my awful leg pain fixed and found out I have stage 4b, not what I was expecting of course. It started the roller coaster of emotions. One year in I found this site, and it has been a blessing to me. I come here every day for support, and there are many on here who you will be able to connect with. I wish you the best on your journey, you can do this, no it won't be easy, just keep fighting. Best to all.

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I am 75 Gleason 8 you should get a Biopsy MRi Pet scan .Its important to know where the cancer is. It important to know where it is

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I have a friend who had proton treatment and swears by it. Any others have this experience? Any help (details) would be very welcomed. Thank you.

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Many excellent comments here, and since age was mentioned, I would like to share my recent experience as a 78 year old who chose surgery.

I had surgery 7 weeks ago at age 78, for GG2 Favorable Intermediate Pca. My surgery went well, the pathology report was very encouraging. I had my 6 week ultra-sensitive PSA test = 0.009 ng/mL or "Undetectable". That means I won't need adjuvant radiation and/or ADT.

As for the side-effects, the incontinence and ED are real and not to be taken lightly. They are unpleasant, awkward and inconvenient but, in my case, despite my age, I feel I made the right decision and will be able to live with them. Surgery may not be the best option for others, but I just wanted to share my experience while it is still fresh in my mind.

Whatever your decision, I wish you all the best on your journey. You have come to the right place!

By the way, there was a recent posting which I replied to in greater detail. The posting is entitled "IS 76 TOO OLD FOR PROSTATE CANCER SURGERY". Here is a link to that posting where you will find my reply:
https://connect.mayoclinic.org/discussion/76-too-old-for-surgery/?utm_source=connect.mayoclinic.org&utm_medium=email&utm_campaign=digest&utm_content=summary_interest_discussion&pg=4#chv4-comment-stream-header

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I would lean heavily in the direction of surgery unless your facility does not offer a robotic surgical approach. If your biopsy shows it’s not metastasized then surgery should work. I know that many improvements have been made and complications are less likely that 10-15 years ago.
I had 40 radiation treatments that caused all kinds of issues with digestion and colon inflammation. Treatments for the damage caused by radiation were more involved than the prostate radiation. I am still not always able to work around the house or take trips without worrying about episodes.
My brother had a Davinci surgical procedure with no nerve issues and no incontinence after recovery.
Make sure you stress surgery as your primary method.
I am sorry for your condition but know that many people are still kicking after the diagnosis you have. Good luck and God Bless.

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