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In shock. What to expect?

Fozzworth profile image
30 Replies

I’m processing some unexpected news and hoping for insights from anyone with a similar experience. My PSA was 1.9 in January 2023, then rose to 3.8 in September 2023 before starting TRT. By March 2024, it was 5.9, and over the next six months, it stayed around 7-8 despite stopping TRT in August.

An MRI of my prostate came back negative, suggesting inflammation instead, so I was treated with antibiotics, but my PSA held steady at 8.

Then came the TRUS biopsy: benign on the entire left side, but 5 cores on the right side with Gleason 6 (3+3) and one core with Gleason 7 (4+3), with 90% involvement in that one core. I really expected a benign biopsy result based on the MRI, so this news hit me hard.

Now, I have a PSMA PET scan scheduled, and my urologist is recommending a prostatectomy.

Has anyone else been through something similar where only one core was 4+3 = 7, even with high involvement? Any encouraging thoughts or advice on what to expect from here?

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Fozzworth
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30 Replies
LowT profile image
LowT

How large is the prostate on MRI?

Get a second read on the slides.

Fozzworth profile image
Fozzworth in reply toLowT

MRI Summary: First and Second Readings

First Reading:

Prostate Volume: 23.21 cc

Findings: Diffuse heterogeneity in the peripheral zone, likely due to inflammation or fibrosis. No suspicious lesions detected in either the peripheral or transitional zones.

Impression: No signs of clinically significant cancer (PI-RADS 1). Findings suggest prostatitis.

Second Reading:

Prostate Volume: 31 cc

Findings: Diffuse low T2 signal in the peripheral zone with mild diffusion restriction, consistent with prostatitis. No discrete lesions on ADC or diffusion-weighted imaging. Mild bladder wall thickening noted, along with sigmoid diverticulosis.

Impression: PI-RADS 1 (very low likelihood of cancer). No suspicious prostate lesion; findings suggest prostatitis.

Both reads indicate a low likelihood of prostate cancer (PI-RADS 1), with findings consistent with prostatitis and no significant abnormalities in surrounding structures. Differences in prostate volume measurement (23.21 cc vs. 31 cc) were noted between the two reads.

cpl901 profile image
cpl901 in reply toFozzworth

First of all : dont stress and rush in a treatment. Go and ask second opinion. If you are young enough and have a good body, you could do a surgery but only from a good one. I had pirad 3, no lesion, but the mri guided biopsy was done the way that a couple a cores came out with G 3+4 and one 4+3. But i waited (looked around) 9 month before going to surgery. Psa was hovering between 4 and 8 (did it seberal times in these 9 month). Now : one year 2 month after surgery still rehab and hoping getting to my baseline before. Incontinence was absolutely no problem, bit of leakage 3 month after RP, but now it s ok. Good luck. And : Take your time !!!

addicted2cycling profile image
addicted2cycling

Take a chill pill and do some research in addition to reading the replies you will be getting.

LowT profile image
LowT

Have you had a percent free PSA done?

Fozzworth profile image
Fozzworth

It was low and I know that's bad. Like under 10.

Tall_Allen profile image
Tall_Allen

Talk to a radiation oncologist as well.

Androgel123 profile image
Androgel123

Mine is 4+3 medium chance of spreading diagnosed 2 1/2 yrs ago. Recent MRI shows that the Cancer is abutting the capsule. Out of all the people I’ve talked to…. I need treatment now. And I’ve decided to get PR. Don’t want hormones and RT. it’s not just going in , getting a blast of radiation. Too much could go wrong in my opinion and it might not even work.

conbio profile image
conbio in reply toAndrogel123

Just and FYI - I chose the triad of EBRT, Brachy, and ADT. 2 years after treatment I'm doing great. RP would have had a very high risk of incontinence and I said no thanks. And 2 folks I know who had RP had to go back in for ADT and radiation anyway. But everyone has to make their own decisions.

NanoMRI profile image
NanoMRI

Before a PSMA PET CT, based on my experiences and lessons, second opinions of the pathology is where I would start, seeking alignment of all the findings. Genomic testing of the biopsy samples may provide you with further useful information.

It is important to be certain the 'worst' bits of the lesion were sampled. My biopsy missed the worst bits of my lesion so my cancer risk was under-scored. My first pathology opinion was 3+3 but was actually 4+3 post RP. I am not suggesting your pathology could be worse - IMO you want to be sure it is not over-scored.

Also, based on what you have shared a recommendation for treatment before more definitive diagnosis seems premature to me - I would seek out a urologist that supports further investigation before making a recommendation. Hope this helps. All the best!

Androgel123 profile image
Androgel123 in reply toNanoMRI

It does help.we’re studying all we can. My wif is 67 and I’m 63 . So we’re thinking about just letting it ride and watch it. It could take up to 10 yrs to metastasis and one could live 10 yrs after that. So let’s see , maybe 5 or ten to metastasis and maybe live 5 or ten more. So maybe 15 more years? Or maybe it won’t spread at all. In 15 years I’ll be 78. We don’t live much longer than that anyway. I Have inguinodynia which keeps me from wearing pants or underwear ,… so if I have incontinence there’s no way I can catch any leaking urine. This is why I can’t have it removed. Plus I have severe sciatica and inguinodynia and my quality of life right now is so so. But our sex life is wonderful. Every third day. So put my existing health problems with dribbling urine and impotency and I’ll be miserable.

NanoMRI profile image
NanoMRI in reply toAndrogel123

Wonderful you have a supportive wife! With all you have shared I would reemphasize focusing on obtaining a most accurate diagnosis, confirmed by multiple methods. Just maybe, no G 4 at this time. This beast can be very slow or very fast - seems to be a bit of a roll of the dice. All the best!

Androgel123 profile image
Androgel123 in reply toNanoMRI

Well,…? Now we’re thinking just don’t do anything right now and watch it. I have severe sciatica which is awfully painful. I also have inguinodynia which doesn’t allow me to wear pants or underwear….. so if I get it removed I won’t be able to wear a diaper or depends to catch my dribbling. Your feedback is valuable!

Androgel123 profile image
Androgel123 in reply toNanoMRI

Also, Urology of Virginia pushed me to take some sort of treatment 2 1/2 yrs. Ago but we decided to watch it. We got through those years without any change. Cancer hasn’t even grown! It’s only touching the prostate capsule and it’s slow growing.

NanoMRI profile image
NanoMRI in reply toAndrogel123

Simply sharing, my cancer had spread further than all imaging indicated and all docs thought; for each of my three treatments. I am now experiencing this harsh reality with metastatic melanoma.

ulfhbg profile image
ulfhbg

Like Tall Allen said, you should also talk with an Oncologist regarding possible radiation treatment alternatives. Depending on the results from the PSMA Pet Scan you have differents alternatives with differents pros and cons.

You seem to have a localized prostate cancer which is good because then you rather many options, all with curative intent.

Best wishes - Ulf

Androgel123 profile image
Androgel123 in reply toulfhbg

Thank you for responding but I think we’re still going to keep an eye on it. They tried to get me to take treatment or surgery 2 1/2 yrs ago and I’m still fine and my cancer hasn’t grown any. Yeah my prostate has doubled in volume but that’s from bph and that’s why the cancer is touching the capsule. I have no way to catch any dribbling after treatment or removal. Can’t wear pants or underwear

Fozzworth profile image
Fozzworth

Is it encouraging at all the only one core was 4+3 ?

conbio profile image
conbio in reply toFozzworth

Well, it certainly could have been a higher Gleason Score or more widely spread. So take this as early detection. As others have said - go talk to a radiation oncologist and get their view point. Here is a good source of information: pcri.org/

You have time to research this. Prostate cancer is generally slow growing. But start now, talk to the professionals, and do your own researc.

Murk profile image
Murk

I would find a highly Rated Radiation Oncologist at a great facility and listen and learn. I bet you big time your PSMA PET scan shows nothing which happens often.

pakb profile image
pakb

Definitely talk to an oncologist that specializes in prostate cancer for another opinion.

EdinBmore profile image
EdinBmore

Scary shit, right? I am sorry for the unexpected and frightening news.

Def get second (and third) opinions from radiation oncologist and medical oncologist. Weigh your options (and do your independent research). Ask about side effects of surgery vs radiation. Consider talking with counselor or PCa group.

Good luck to you. Btw, this site is a great source of info.

EdinBaltimore

WilsonPickett profile image
WilsonPickett

Do a serious inquiry into radiation. Non-invasive, same statistical outcome.

jjpeabody profile image
jjpeabody

I was able to get a televisit second opinion from Dr Howard Sandler at Cedar Sinai (recommended by Tall_Allen). Best experience I ever had with RO, very competent and confident and even helped me find RO closer to home. Also, a great RO is one thing, just make sure the technicians performing the treatment are a center of excellence or have a proven track record. Good luck.

JWS13 profile image
JWS13

you only have a one core gleason 4-3 ... and 5 cores 3+3 (which will never metastasize -EVER) and a urologist who is out of whack with immediately reccomending a prostatectomy !! 20 tx of IMRT or even 5 tx Sbrt and you should be good...(at a centert of excellence) ...NO ADT w G-7..recent trials say no increase with adt of overall survival with G-7 ...DON"T RUSH ..you got plenty of time...a bad decision now or a rushed decision will haunt you later on ...watch Mark Sholtz videos PCRI and get 2nd ,3rd opinions listen to Tall Allen.

janebob99 profile image
janebob99

Of course your Urologist is recommending surgery...that's what they do for a living.

I would recommend seeing a MO and a RO. You have plenty of time.

I had 5 sessions SBRT, and am also taking 6 months of Orgovyx for ADT. My PSA dropped from 10 to 0.03.

Surgery has the worst side effects of all PCa treatments.

Bob in New Mexico

Cooolone profile image
Cooolone

I enjoy with some humor those who discuss treatments they haven't had themselves. The internet will skew opinion because those who do well, regardless of therapy, don't come online gloating about how well they've done.

Anyways, I will impart some facts that you'll be able to mitigate some of the worst experiences by getting your care at a Major Cancer Center and one rated in excellence! It is there you'll have access to the best, and access across treatment modalities without leaving the building. If you aren't at one, it would be a great choice for your 2nd opinion. And any patient should have at least 2 opinions, let alone at least one that's not invested in the treatment type.

Cancer diagnosis is going to drive the treatment path... And which course may have whatever outcome you're trying to achieve. Mortality and Morbidity are two separate and distinct aspects of cancer treatment, and usually are mutually exclusive. For some patients, Mortality decisions rule, and vice versa for others. Nobody can chose this for you... But if you chose to treat, it's your body and you get one shot at it, there are no redo's ... So don't you want the Best of the Best in your corner? Get to a COE, travel if you must, don't skimp! Any of the top 5 would work well.

Good Luck and Best Regards

London441 profile image
London441

As you can see, much experience and some opinions devoid of it. Much of it quite valuable to be sure. Also some erroneous, such as surgery being a good option if you’re younger. While it’s definitely a bad idea if you’re elderly or not in good health, getting RP because you’re young is also a bad one. Especially if you value your erectile function.

On the other hand, incontinence from surgery is not at all common, although I did end up with it. Again ED with surgery is very common, and statistically it fails 30% of the time, necessitating further treatment (radiation and possibly ADT) anyway.

Radiation has come a long way in the last 20 years. Other than robotic assistance surgery has not. Talk to a RO.

Most of all, the one thing I’m pretty sure we agree on is get yourself to the nearest and best center of excellence you can-this disease is extremely heterogeneous and you want only the best docs to navigate you.

Fiddler2004 profile image
Fiddler2004

Hi Fozzworth. Has the Oncologist / Urologist started you on ADT (Lupron etc...) and or Xtandi/Zytiga? My opinion would be 1. make sure you consult with an oncologist before undertaking any surgery you may be able to lower your PSA using the aforementioned medications rather than surgery. 2. Most prostate cancers are not an emergency, certainly get a 2nd opinion preferably from a medical oncologist. (my opinions) Wishing you Best of Luck 🙏

fast_eddie profile image
fast_eddie

Don't be in a rush to get a prostatectomy. That is the most invasive treatment option. Do your research. There are other treatment options with fewer risks. I chose HIFU myself. I did have to go out of state and out of pocket.

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