New here with prostate cancer.

Posted by jimcarr @jimcarr, Jul 24 10:02pm

Hello and thank you for being here. I am 75 years old and have been diagnosed with prostate cancer. I have been reading posts here and anywhere else that has information about it.
I am getting use to most of the acronyms and abbreviations I read but not all of them. Is there a page that spells them out?
I have read that some people have 3+4=7 or 4+3=7. My biopsy shows both plus some kind of nerve invasion so does that make me a little different from others?
I also have had a psma pet scan that showed it has not spread past the prostate.
I have a doctors appointment Monday morning to go over everything but I’m not sure about what questions to ask about the different options regarding surgery or radiation as there seems to be options for both.
I am using the VA in San Francisco for my treatment if that helps you with any response you may have.
I am sure to have more questions after the appointment and I am very grateful for your help and support.

Jim Carr

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Thanks for all your help with this. I have not seen anything about a Decipher score in my biopsy so I will ask about that. Someone has asked about where they found cancer in my prostate and the biopsy shows it’s in the left, right and midline for what that is worth.
If I get surgery it will be in San Francisco VA hospital as they did my back surgery 2 years ago after my wife died and they did an excellent job and excellent care while I was there.
If I need radiation I am hoping to get it in Eureka as I am 250 miles north of S.F.
Looks like Monday will give me a lot more information to think about and I’m sure I will have more questions.
Thank you all for your help, Jim

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In my opinion, I think you may not have the surgery at 75. You may have your cancer be monitored periodically.
My Gleason was 3+4 before the surgery but it was changed to 4+3 after it. I understand 4+3 is worse.
I think this may help you: I had the surgery 11 years ago and 14 months later there was a cancer recurrence. I was given 40 sessions of radiation in 2017 and on Lupron for 6 years. My cancer was diagnosed as incurable in 2019. I am 80 years old now and able to do everything by myself, even though a peripheral neuropathy is affecting me.
I think you should not be too concerned; just follow your medical team plan.

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Profile picture for jimcarr @jimcarr

Thanks for all your help with this. I have not seen anything about a Decipher score in my biopsy so I will ask about that. Someone has asked about where they found cancer in my prostate and the biopsy shows it’s in the left, right and midline for what that is worth.
If I get surgery it will be in San Francisco VA hospital as they did my back surgery 2 years ago after my wife died and they did an excellent job and excellent care while I was there.
If I need radiation I am hoping to get it in Eureka as I am 250 miles north of S.F.
Looks like Monday will give me a lot more information to think about and I’m sure I will have more questions.
Thank you all for your help, Jim

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@jimcarr Your medical team would have to send out your biopsy tissue to get a Decipher test done on it. It is not cheap. Test put out by Veracyte. Will not be on biopsy report. May or may not be covered by VA.

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Medicare does cover it so I imagine VA will

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Profile picture for acn25 @acn25

Think long and hard about the androgen deprivation therapy (ADT), especially if you are a physically active person. It kicks your a**

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@acn25 What's there to think about? Really, it comes down to do you want to snuff your cancer growth or not? I did everything I normally do while on ADT. It took more effort, as in pushing away from the easy chair but worth it as it helped me feel better for hours.

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Acronyms everywhere! I think that with my military background, acronyms are second-nature to me and aren’t a problem.

Whenever you have biopsy results with different Gleason scores, it’s standard practice to use the higher one - in your case, that’s 4+3=7 ( Grade Group 3; intermediate unfavorable).

Perineural invasion (abbreviated PNI) is an additional risk factor that simply means that when you have treatment, they’ll treat it a bit harder. But, it shouldn’t change your treatment decision. (It’s not different from others, it’s just one of the half-dozen other risk factors that come out of an MRI or biopsy.)

Since you’re asking for questions to ask about the different options regarding surgery or radiation, I’ll post those separately.

(At 65y, I had a localized, Gleason 7=4+3, PSA of 7.976, and chose proton radiation + ADT. That was 5+ years ago. My wife later told me that if she hadn’t known I was undergoing radiation treatments, she wouldn’t have realized it from any change in me. That’s how benign this process can be.)

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Questions to ask regarding prostate cancer external radiation treatments

You will want to weigh the risks, benefits, preferences, and outcomes of various external radiation treatment options; these can help guide your decision and help you start an open and candid conversation with your radiation oncologist.

> What are the different external radiation treatment options (IMRT, SBRT, Proton) for my condition?
> Which kinds of external radiation therapy would treat my cancer best (IMRT, SBRT, or Proton)?
> Which are available at this facility?
> Which would best maintain my quality of life?
> How many have you done?
> What are the procedures (When/Where/How) for each type of radiation treatment?
> What are the expected side and after-effects and risk factors with (the specific form of) radiation treatment?
> Will I require hormone therapy (Eligard, Lupron, Orgovyx, etc.) as part of my treatments?
> What side-effects should I expect from the hormone therapy?
> Is there a way to minimize the side-effects from the hormone therapy?
> What are the chances that I will suffer from complications during or after treatment (from either the radiation or the hormone therapy)?
> What are the chances that I will have GU, GI, ED, incontinence, bowel, rectal, problems during or shortly after, treatment?
> Should I be worried about side effects years after treatment has ended?
> What advanced technologies do you offer at this facility that can help reduce the risk of side effects?
> For (the specific form of) radiation, will I use a rectal spacer? If so, what type (SpaceOAR, Barrigel, or BioProtect)?
> Is there a chance the cancer will come back after treatment?
> What will the preparation for each treatment look like?
> What will the duration of each treatment be?
> Can you describe the entire treatment plan?
> Will there be an impact on my daily routine?
> Will I be able to continue to work?
> What activities will I still be able to do?
> What activities are not recommended during each type of treatment?
> How soon must a decision on treatment be reached?
> Is there anything that I didn’t ask that I should know?

Hope that helps!
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Questions to ask regarding prostatectomy

You will want to weigh the risks, benefits, preferences, and outcomes of various treatment options; these can help guide your decision and help you start an open and candid conversation with your surgeon.

Do you recommend surgery for me based on the results of my tests/scans? Why?

If yes, what type of surgery are you recommending? Can you explain what that will involve?

How many of this type of surgery have you done successfully (hundreds/thousands)? (“Successfully” means treated the disease and maintained quality of life.)

Will lymph nodes and/or seminal vesicles be removed? How will that affect me?

Will you be able to completely spare my nerve bundles? What can I expect if they can’t be spared?
—> Do you specialize in nerve-sparing surgery?

What are the potential complications of the surgery?

Will I have difficulty controlling my bladder or bowel function after treatment? If so, for how long? Will any of the effects be permanent?
—> Do you specialize in retzius-sparing surgery?

Will this treatment affect my sex life? If so, how and for how long? Will any of the effects be permanent?

What are other possible short-term and long-term side-effects of having this surgery?

Will I be required to use hormone suppression as part of the treatment plan? If so for how long? What are the side-effects? Are they short-term, long-term or permanent?

How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

How long will I have to be off of work?

How will treatment affect my emotional well-being?

How high is the risk of metastasis and how quickly is that likely to happen?

What type of treatment would I have if the cancer returns?

How will I know if it returns?

How long will the operation take?

How long would I be in the hospital?

Can you describe what my recovery from surgery will be like?

Are there any other tests or scans that I should have done before I make a decision?

How quickly do I need to make a decision?

Is there anything that I didn’t ask that I should know?

Hope that helps!
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Profile picture for guybe @guybe

@acn25 I have to differ. ADT just works, and it won't "kick your a**" if you fight it. If you do serious resistance training 3 or 4 times per week (weights up to the point of failure), and work in some cardio, not only does it fight muscle loss due to absence of testosterone, it will actually counter much of the fatigue brought on by ADT.

The only real caveat to this is when you are NOT a "physically active person" going into ADT. Then it may well kick your a** because if you weren't physically active before ADT, it will be harder to get off the couch when you haven't had that habit under healthier circumstances. But you gotta. Start slow, and build. ADT is worth it.

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@guybe I agree, especially with those aggressive features present.
Phil

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Well I had the appointment with the surgeon today and he basically gave me the information about surgery vs radiation and the side effects. Now I have to have an appointment with the radiologist to go over the radiation with me and then another appointment with the surgeons to get a plan.
Of course it will take at least a month for all of this to happen so now I have to be patient and not let it get to me.
He did say that either one would work as the cancer has not spread past the prostate although he did say it was aggressive and needs to be done.
That’s my update for now and thank you all so very much for your support and help and I will keep checking in with any questions or concerns while I wait for the next step.
Jim

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