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Newly Diagnosed

Aiden14 profile image
43 Replies

Newly diagnosed with Early prostate cancer. PSA 3.9. Low risk with Gleason 6. Considering Hig dose brachytherapy or external radiation.

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Aiden14
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43 Replies
AlanMeyer profile image
AlanMeyerModerator

Aiden,

You may be a good candidate for active surveillance. Can you tell us a bit more about your condition - your age, number of biopsy cores showing cancer, percentage of each core if you have it?

I've had both HDR brachytherapy and external beam radiation. They appear to have cured my Gleason 4+3, PSA 10+ cancer. The external beam was easier to take - no hospital stay, anesthetic, or surgical procedures were required - though it did burn off my pubic hair (it grew back later), cause sunburn like effects on the skin, and aggravated my hemorrhoids. Low dose rate brachytherapy is also effective and only requires one treatment. I needed two for the HDR.

I think the treatments you are considering work well, as do most treatments for low risk PCa. However the critical thing with all of the treatments is the skill, experience, and commitment of the doctor who performs them.

Best of luck.

Alan

Aiden14 profile image
Aiden14 in reply to AlanMeyer

Thank you for the information. Greatly appreciated. Age 73, 12 biopsy’s Gleason 6 (3+3), 2 with cancer 1-15% 1-5%.

AlanMeyer profile image
AlanMeyerModerator in reply to Aiden14

Aiden,

I think you are describing a textbook case of qualification for active surveillance (AS) - low PSA, low Gleason, no more than two biopsy cores with cancer with only a small bit of cancer in each core, and an age such that a cancer that takes 10 to 20 years to become dangerous is less of a threat to you than if you were, say, 50 years old.

One way to think about about this is to make a plan for active surveillance and a plan for radiation treatment and compare them. For AS the plan might include at least one PSA test every six months, and a target PSA such that if the PSA climbs above that then it's time for treatment. A conservative PSA target might be 5 or 6, an only slightly riskier one might be 8 or 9. You might also choose a PSA target (e.g., 5) above which you'll get another biopsy, an MRI, or other tests. You'd want to ask your urologist or radiation oncologist (and maybe others on this forum) what he thinks of the plan and whether he would suggest any changes. With a plan like that you've not decided to just do nothing and wait. Your surveillance is active and you know what you're looking for.

As for the treatment plan, I'd suggest that you further research the options and especially research the radiation oncologist and clinic that would perform the procedure. As things stand now, a patient gets one main chance at curative treatment. If it doesn't work, he's generally looking at long term control of the cancer rather than cure. So it's important to make that one chance the best you can get. Google the RO's name and see if you can find out more about him. If he works at a university or research hospital, look for him in Pubmed ( ncbi.nlm.nih.gov/pubmed/ .) Ask if anyone in this forum knows him. You may not be qualified to judge the man's competence, but you may be able to evaluate him as a man. Does he listen to your questions and answer them carefully, or does he blow them off with superficial answers? Does he make extravagant claims for his success rates and rates of side effects? Is he impatient to get you out of his office and see the next guy, or does he schedule what seems to you a reasonable amount of time to answer questions? I think these can all be indications of a conscientious doctor vs. one who is in it to do the work quickly and get paid without thinking much about the guy under the x-ray beam. The National Cancer Institute recommends treatment at the research centers. See: cancer.gov/research/nci-rol... .

One advantage of getting treated now is that you're giving the disease less time to develop before killing it. Another is that, while you might still worry about the cancer recurring, you might worry less than if you don't treat it. One advantage of waiting is that treatment options get better over time and treatment five years from now might be more precise and effective than the treatment available today. And of course it could also turn out that you never need treatment. As Tall_Allen reports, half or more of men on AS never need treatment. The ratio among older men is probably even better.

I think you're doing well to solicit advice from others but, of course, the decision is yours. Best of luck with it.

Alan

AlanMeyer profile image
AlanMeyerModerator in reply to AlanMeyer

I see from another of your postings that you're looking at the Moffitt Cancer Center. That's one of the NCI Designated Centers and has their top rating of "Comprehensive Cancer Center". It should be an excellent place to get both advice and treatment.

Alan

Aiden14 profile image
Aiden14 in reply to AlanMeyer

Working with Dr Daniel Fernandez at Moffett. Highly recommended. Very caring and knowledgeable. Prostrate at 60ml. Which could present side effects to Brachytherapy, which Dr Fernandez has done many. I’m leaning towards external RT now.

AlanMeyer profile image
AlanMeyerModerator in reply to Aiden14

It sounds like you're really nailing down all the variables.

Best of luck.

Alan

Aiden14 profile image
Aiden14 in reply to AlanMeyer

Trying to make the right treatment decision that fits my personality. Considering risk and “rewards”. Today the external RT. Considering stats AS would seem appropriate, However I would be apprehensive at every test. As a type A personality “let’s get on with it” and move on.

Thanks for you encouragement and suggestions.

407ca profile image
407ca in reply to Aiden14

Aiden

You would be well served to take tall_allen's advice to let the emotional temperature come down. You have plenty of time to consider all options.

Many believe a 3+3=6 gleason should not be thought of as cancer at all as the chances of it spreading are small. Your score and having only 2 cores show a tiny amount of cancer fairly screams ACTIVE SURVIELLANCE. You need to understand that you might well cause yourself more hatm than good with any treatment. By "dealing with it and moving on" you might very well be moving on to a life of side effects that could easily be avoided. The best thing you can do is take a few months and learn more.

All the best.

Aiden14 profile image
Aiden14 in reply to 407ca

Thank you for the advice. Greatly appreciated.

tsim profile image
tsim in reply to Aiden14

It sounds like something you'll not have to deal with, but If you (or anyone else) do/does ending up needing HDR brachy, (hopefully not) Dr. Dan Fernandez is the guy you want. Just had it done there 6 mos. ago with 25 sessions of IMRT. No side effects so far. He's a talented practitioner. I agree with the other guys, no need to do anything rash. Gleason 6 with two cores, highest 15%, active surv. would be at top of my list. Take your time,

Longterm101 profile image
Longterm101 in reply to AlanMeyer

Where did u have your Brachy done

Aiden14 profile image
Aiden14 in reply to Longterm101

Considering Moffett cancer center.

AlanMeyer profile image
AlanMeyerModerator in reply to Longterm101

My HDR brachytherapy and EBRT (and Lupron) was done in a clinical trial at the National Cancer Institute in Bethesda. I was working for NCI at the time (as a computer programmer) and (to mangle a common metaphor) decided to put my prostate where my money was.

Alan

Longterm101 profile image
Longterm101 in reply to AlanMeyer

Sounds like you made the right choice

I was at NIH today getting a psma scan

Impressive place

Longterm101 profile image
Longterm101 in reply to AlanMeyer

Who did ur Brachy and external beam ?

Aiden14 profile image
Aiden14 in reply to Longterm101

Not there yet. Working with Dr. Daniel Fernandez at Moffitt CC in Tampa. Skilled at both.

Tall_Allen profile image
Tall_Allen

Is there a reason you can't do active surveillance? 55% of low risk men never progress, and are watched closely enough that there is plenty time to treat if you begin to.

Aiden14 profile image
Aiden14 in reply to Tall_Allen

Thanks for your reply. Thought about surveillance but would rather get rid of it.

Tall_Allen profile image
Tall_Allen in reply to Aiden14

Well, you have plenty of time to make that decision. Take your time. I've found that patients often reconsider as their emotional temperature comes down over time. This is coming from a man who had low risk PC and chose SBRT. I also considered HDR brachy, and think they are both excellent treatments. Also, fill out the following nomogram, and see if the information affects your decision process:

webcore.mskcc.org/survey/su...

Magnus1964 profile image
Magnus1964

At your age and Gleason Score i go for active surveillance at least for a while to see your PSA goes.

Aiden14 profile image
Aiden14

Thanks

Aiden14 profile image
Aiden14

Thank goodness.

srose007 profile image
srose007

Aiden, good luck to you also my friend. I have similar stats as you except I'm 56 and am now in AS. Unlike you however I'm a Type B personality and don't feel the need right away to be done with it, but totally understand where you're coming from. I'll be following this post and wish you all the best.

Aiden14 profile image
Aiden14 in reply to srose007

Thanks. Hoping you have continued success.

Drmaciej profile image
Drmaciej

Hi there, I’m 47, December 2018 dx of Gleason 6. 3 cores positive, genomics put me into very low risk at my age, I decided to go with Cyberknife M6 with a spaceOAR. Did this at Boca Regional, Lynn Cancer Center, the only facility in south Florida with a Cyberknife M6. Placement of markers and spaceOAR was hard, but side effects of 5 days of radiation was not bad. Urinary urgency and rectal urgency due to the daily enemas. At this point all has resolved and I’m getting my first PSA next week. No problems with urine, bowel movements or erections.

Aiden14 profile image
Aiden14 in reply to Drmaciej

Thank you. Good luck with you PSA

dadzone43 profile image
dadzone43

Good line-up of responses. Lots of choices. You are the one who lives with your decision. Your insights about your personality are key: can you live with the not-knowing? Some could; some could not. Neither is right or wrong. Good luck with whichever pathway you follow.

Aiden14 profile image
Aiden14 in reply to dadzone43

Thank you

ASAdvocate profile image
ASAdvocate

All of the medical associations that issue guidelines for the treatment of prostate cancer recommend active surveillance as the default treatment for your pathology. Every one of them.

Studies have shown that men who chose AS, and later were upgraded and needed treatment, had no greater mortality risk than those who chose immediate treatment.

I chose AS ten years ago, and my tests have shown no cancer progression. Why risk the side effects of treatment that you don’t need?

Aiden14 profile image
Aiden14 in reply to ASAdvocate

Thank you so much. I understand.

Aiden14 profile image
Aiden14

Thank you for your guidance understand.

timotur profile image
timotur

Not a Dr, but HDR is not a TOC for low grade, prostate confined PC. It’s used to treat high risk cases with escapular extensions. LDR Brachy would be a better choice if you do RT.

Aiden14 profile image
Aiden14 in reply to timotur

Thanks

Jeff85705 profile image
Jeff85705

Whoa! Don't go ahead with invasive treatment until you have had other specialists review your case. You don't give much in the way of details, but you appear to be a candidate for active surveillance. Your numbers don't appear to show aggressive cancer. Take your time and research your situation. Best wishes!

Aiden14 profile image
Aiden14

Thank you. Spending a lot of time researching.

Hello Aiden. You have good data for AS. Good luck with your decision. I will say take your time.

Aiden14 profile image
Aiden14

Thanks. Appreciate comments.

Hindemith profile image
Hindemith

Aiden, I'm in a similar position regarding Gleason score and low volume, the only difference - and maybe it's a significant one, I'm not sure yet - being that I have 3 G6 cores spread out in both left and right anterior apexes. I have one urologist urging me to have treatment and another non-urologist advising AS. Sounds to me as though you're in a bit better position, and especially given your age vs. mine (65) I'd add my voice to the chorus of guys advising you to take your time and seriously consider AS!

Aiden14 profile image
Aiden14 in reply to Hindemith

Thanks. It is a dilemma. However when you think of AS and hear some horror stories it becomes confusing. Then with AS you think of the procedures necessary every 3, 6, and 18 or so months. I start to look more an more to external RT.

Hopefully we all make the correct conclusion. Best of luck.

The one thing to remember about AS is that initially, you have only a few pieces of data like a level of PSA and a biopsy result. Then, you can add pieces of data such as a second opinion, an MRI within 6 months or so to see what they indicate and whether AS is still appropriate. Then more quarterly PSA tests, a confirmatory biopsy within a year of the first. At the one year mark, you have so much more data. If the data is still favorable, you and your team assess. If some piece of data at any point in time kicks you off, you reassess. My point is that not every case is the same because there are so many variables. It does help to have a lot of data because knowledge is power. Talk with a surgeon and an RO and get their thoughts. You may even be surprised. Good luck.

Aiden14 profile image
Aiden14 in reply to

Have been doing that. Discussed with Urologist, had G and MRI discussed with RO all confirm status. The rest is primarily up to me. Thanks for the guidance.

ASAdvocate profile image
ASAdvocate

After the first year, my only requirements in Johns Hopkins’ AS program are for six month PHI, annual DRE, biannual MRI, and a biopsy every 2-4 years.

I have also read some horror stories about AS, and they almost always 1) involved a first biopsy that underdiagnosed them; or, 2) they considered themselves on AS, but were not following a strict testing protocol. In the first cases, AS actually worked as it should, as their more serious cancer was found on the next biopsy, and they did not lose their time window for treatment.

It is up to you. Anytime that I have had second thoughts about AS, I would just access one of the many PCa support forums and read of men complaining about the side effects of various treatments.

Aiden14 profile image
Aiden14 in reply to ASAdvocate

Have been doing a lot. Discussed with Urologist, had G and MRI discussed with RO all confirm status. The rest is primarily up to me. Thanks for the guidance.

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