Recently diagnosed 44yo: Hi, Had a PSA... - Prostate Cancer N...

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Recently diagnosed 44yo

Youngc profile image
13 Replies

Hi,

Had a PSA test near end of 2019 was around 3.6, dre slight firmness on left. Had a biopsy (3core as first uro thought it was prostatitis due to my age) mri showed an unhappy prostate with shadow covering the posterior and some bright spot’s that aren’t supposed to be good.

3 cores showed Gleason 6 3+3 low grade.

Have since found a good surgeon/urologist to perform Robotic RP if required (this was recommended as the best option for me or AS)

He has advised a full core biopsy and another mri within the year of my first one (April 2020)

I have been tracking my psa approx every 3 month’s, had a couple of spikes upto 4.8 but this was because I had to provide a semen sample as I was getting random testicle pain.

I take some cannabis oil, vit D and liposomal vit C every day and this help’s discomfort.

I got checked for 4 gene’s brca etc. negative.

I’ve sent my blood to be put through a CTC iset machine but not heard anything back.

Hopefully I’m on the right path.

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Youngc profile image
Youngc
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13 Replies
Magnus1964 profile image
Magnus1964

First, I was diagnosed at age 46 and I am still here 28 years later.yyou vitamin d should be D3, a vegetarian diet would not hurt.

Youngc profile image
Youngc in reply to Magnus1964

On AS? That’s great going, I’m assuming you made a few lifestyle changes? Yes it’s D3 1000ug daily, I also take Pomi-T supplement. I was actually vego for 7 year’s then about 3 or so years ago went back to eating meat :( although I did read something about the people who live in the far north Tundra have very low PCa but eat a lot of meat (probably whale/seal) so not sure about the animal fat thing but who knows.

Also read about dog’s getting more cases of PCa that could possibly correlate to all the grain’s in the food.

Magnus1964 profile image
Magnus1964 in reply to Youngc

Since my diagnosis I have added fish to my diet.

Tall_Allen profile image
Tall_Allen

"Have since found a good surgeon/urologist to perform Robotic RP if required (this was recommended as the best option for me or AS)"

Well, that's because you only talked to urologists. To a hammer, everything looks like a nail. Rather than telling you what your other options are, a low risk man of your age should only be pursuing AS. He advised you correctly that you should have an mpMRI-targeted biopsy within a year to confirm your current diagnosis.

The testicular pain, the hardness of your prostate, and the see-saw pattern of your PSA are classic symptoms of prostatitis. Prostatitis usually comes and goes on its own, causing PSA to spike when it does. If you get a good reading of your biopsy (see below), they might find evidence of chronic or acute prostatitis.

For about $300, you can get a second opinion on your biopsy from the best pathologist in the world. It may not change your diagnosis, but if you can afford it, is well worth it. You usually just call your urologist's office and tell them "Please send the biopsy slides to Epstein at Johns Hopkins for a second opinion."

pathology.jhu.edu/departmen...

Vitamin D and liposomal Vitamin C are probably harmless, but it may make you feel better that you are doing something. The only drug that has been proven to prevent PCa is finasteride. It can have sexual side effects in 20% of men. It will shrink your prostate over time and help you pee better (and reverse balding):

urotoday.com/journal/prosta...

I have no idea why you are getting a CTC analysis.

Youngc profile image
Youngc in reply to Tall_Allen

I live in Australia so probably can’t send slides :) my prostate is also apparently much smaller than average not sure if this is worse. All my urines tested in the beginning and cipro antibiotics didn’t change anything. They have said it’s not prostatitis. CTC I did off my own back as I figured more data. It’s not widely used in Australia but I believe it may show any “seeds” in your blood and it’s origin. The shadow is all over the posterior. Thanks for the links and advice, my PSA has been pretty much steady around 3.6 (Siemens’s and Abbot (higher) method give different results. The 2 spikes I assumed was because of ejaculation on the same day or day before.

Tall_Allen profile image
Tall_Allen in reply to Youngc

Unfortunately, prostatitis is hard to diagnose. It is almost always unresponsive to antibiotics and is most often asymptomatic. A good way of diagnosing it is the see-saw pattern of PSA - it's the only thing that causes it.

CTC shows nothing useful in situations like yours.

JuliesHusband profile image
JuliesHusband

Surgery and AS are not the only options. I would learn more about where the cancer is located and what effect surgery would have and whether it would affect the quality of life you want.

In my case, I opted for radiation because surgery guaranteed impotence while with radiation impotence is a "maybe" or at least a few years' reprieve. Also am not comfortable with the idea of being under the knife, catheters, "maybe" temporary incontinence, "maybe" temporary impotence and so on.

I've finished treatment, am on 3 mo PSA monitoring and seem to be back to "normal" at age 75.

BillNIttles profile image
BillNIttles

Wow, so sorry you are here. First, get a second, third, fourth, opinions, from a variety of specialists. Tall Allen is exactly right about urologists. As a scared person without the support system I have now, I did what mine told me to. God I wish I had known not to trust him. It took me til 2016 to realize what a lazy jackass he was.

I was diagnosed at 44 too, 10 years ago with a score 3+4, and the prevailing opinion was Surgery! Now! Attitudes changed a whole lot within 2 years after my diagnosis and surgery, as prostate cancer research exploded. I was told I was a great candidate for surgery because of my age, good health, pca fully contained, etc., but I managed to beat all those good odds, and clean margins, and ended up incontinent and still having cancer. My score was downgraded to 3+3 upon biopsy. I got salvage radiation, also because my urologist told me to, all it did was burn up my prostate bed. Unfortunately, my adventure with cancer has not improved since then.

I am writing this not to scare you but to say there is no right answer or solution. If I had been diagnosed two years or more later I would have at least delayed getting surgery for 6 months to a year and get a second biopsy. Knowing what I know now I would not get salvage radiation.

You have a Gleason score of 6 and you should be in no rush to treat. Greater research is coming all the time now, we have so many more choices than I did then. Do your own research, but please, take your time. And listen to Tall Allen.

Youngc profile image
Youngc in reply to BillNIttles

Thank you for sharing, sorry to hear it didn’t go as planned. My hope is for new technologies, was reading an article on CRISPR the other day on cancer was interesting.

aceace12 profile image
aceace12

i have never heard of a 3 core biopsy , seems to me if he was going to do one just do a standard 12 core.... sounds like AS for you .... good luck,

Youngc profile image
Youngc in reply to aceace12

He almost took 12 but they thought I could have a serious infection so didn’t want to do any more.

aceace12 profile image
aceace12 in reply to Youngc

ok ...good luck

tsim profile image
tsim

Or this, the mass spec pen genio.io/

all good prostate surgeons should have one.

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