Just diagnosed

[Dar1966]

My husband had his prostate biopsy and we just got the results. We have met with our doctors NP and they went over the results. Out of 16 cores taken 4 were positive. 3+3 on three of them and one is 4+5. So Gleason 9 diagnosis with a 7.2 psa. The pathologist did an extra report on the biggest spot and it came back PTEN intact/NO ERG overexpression. I know that’s a cancer suppresser gene and the doctor was pleased with that. He is scheduled next for a CT scan and bone scan. Just praying the cancer is contained. My anxiety levels are very high but my faith in God is strong. There is no swelling or pain in his groin area and is overall very healthy. He is 56. Can anyone share any positive insight?

[Tall_Allen]

After the bone scan/CT, good idea to have a PSMA PET scan.

[Dar1966 in reply to Tall_Allen]

I’m sure they may order that too. Our doctor said he believes RP will be done mid July. Do you have any insight on the PTEN intact/NO overexpression? Hopefully that means it hasn’t spread. Or at least not so fast. I just don’t know anything about it but the doctor seemed hopeful with that fact.

[Tall_Allen in reply to Dar1966]

The genomics are good. If they were bad, it would lower the odds of curative treatment.

[Dar1966 in reply to Tall_Allen]

So the PTEN intact/No overexpression makes the chances better that it can be contained? The doctor said that the fact he has no pain in his back, shoulders, arms and legs probably will rule out bone cancer. He had a chest X-ray about 9 months ago for another issue and it came back clear.

[Tall_Allen in reply to Dar1966]

It lowers the odds that it has already spread.

[Dar1966 in reply to Tall_Allen]

I’ll take that for a win! Thanks also on the pathologist report it said prognosis favorable. I’m trying to stay positive here. Thanks for all your feedback

[Justfor_ in reply to Dar1966]

Spare him from the useless irradiation of CT and scintigraphy and go straight to PSMA PET/CT. With a GS of 9 he is entitled a proper imaging.

[Tall_Allen in reply to Justfor_]

All remedies for advanced PCa are based on bone scan/CT, not PSMA PET scans. One has to have both.

[tango65]

I agree with Justfor_ , the cancer is Gleason 9 (high risk). Bone scan and CT scans are a lot less sensitive to detect cancer than the PSMA PET/CT. If the cancer were outside the prostate and contained in the pelvis the PSMA PET/CT will help to plan the treatment which could be curative. I would not lose time waiting for bone and CT scans.

[Hidden in reply to tango65]

👏🏼👏🏼👏🏼

[NotDFL]

YOu (or your husband) seem to have chosen surgery (RP); but have you considered the radiation alternatives?

[Dar1966 in reply to NotDFL]

Yes definitely have. Our surgeon is recommending RP and will possibly still need radiation therapy afterwards.

[Hidden in reply to Dar1966]

Often the case.

[Don_1213 in reply to Dar1966]

You have considered alternatives? Have you consulted with a radiation oncologist and a medical oncologist? Surgeons (urologists) tend to recommend surgery, it's what they do.

There are often equally effective alternative treatments with a lesser chance of life-altering side-effects, particularly if the surgeon is talking about following up the surgery with radiation and androgen deprivation therapy (ADT). Many urologists assume that you're going to have surgery and just move ahead on that assumption, never really explaining the alternatives, and the potential side-effects.

[Dar1966 in reply to Don_1213]

We have not met with anyone yet except for them to go over the results of the biopsy. Next we have to have Ct scans and bone scans to rule out any other issues then we will decide on treatment. My husband seems to want surgery. But we would be open to any other options

[Teacherdude72 in reply to Dar1966]

Surgeons always suggest surgery. A good RO will give you all the options and also tell you that surgery is an option after radiation. Surgeon might say not possible but it is Be informed, like your doctor's and never look back and say "I should have...."

We are all different.

I am 7 yes out, G9 no mets, Lupron and Nubeqa. Undetectable psa.

[DarkEnergy in reply to Teacherdude72]

"Surgeons always suggest surgery."

Yup, mention PSMA-directed radioligand therapy and notice their facial expression...

[Dar1966 in reply to Teacherdude72]

Awesome post thank you! We were told last week that if you have radiation first then you can’t have robotic prostatectomy. Is that true from your experience?

[NotDFL in reply to Dar1966]

Yes, although there are a few (very few) surgeons who have the expertise to do such a surgery. But it is a false argument! If radiation fails, there are other ways to address the issue(s).

[Teacherdude72 in reply to Dar1966]

After my exam with the Chief of Urology, surgeon, where he stated that RP cannot be done after radiation I met with the Chief of Radiation Oncology. I told he what he had said and she replied, and I quote "Bull, I have seen him do it". For a second opinion I went to the local National Cancer Institute and the Department head told me it can be done just difficult because of radiation scaring. I had radiation and HDR Brachy boost. Now on Nubeqa.

[Don_1213 in reply to Dar1966]

There wouldn't be a need for robotic RP if radiation failed. The reason it would fail is because there was undiscovered cancer somewhere that wasn't treated. Once it starts becoming evident, the treatment depends on where the cancer is located, but it is very unlikely (highly unlikely actually) to be in the prostate. Further treatment may be localized (close to) or systemic (overall body) - or both.. but it's very unlikely to be any form of surgery.

[DarkEnergy in reply to Dar1966]

My surgeon Urologist recommended surgery, got suspicious because the discussion didn't mention alternative treatments.

So, did my homework, got a visit with a Radiologist, was impressed with the recent PSMA targeted therapies. It uses overlay of various images to guide the radiation target.

My PSA reduced dramatically and appreciate the evidence of seeing the tumor decay without ADT.

[KocoPr]

On the positive side,,,, you came to the right place for advice. The guys on this site have given me the knowledge i need to give myself the best chance to surviving this. I would advise reading some similar posts to your situation.

Please don’t hesitate to ask as many questions and advice. You will notice the response is quick.

[Hidden]

Welcome Dar1966, good job finding us early on. I found this cute 3 yrs after dx. We all know that anxiety , it’s the fear of not knowing . It and pc are friends. You will soon know the full scoop. The good news is that it the best time for APC advances in treatments. Although no one has really figured out APC yet. We see a immunotherapy drug that has cured14 out of 14 rectal cancer patients. All in complete remission.Great hope for us . Gl9 is no joke. I was -an 8 . I was 53 now 61 an I’m in a 6 yr no signs of pc undetectable state. I’m still taking adt. I did 8 wks imrt with Lupron and my tak 700- ( no loner available) to date .At 53 I really didn’t want to die. I did lots of natural stuff and alt med as well. His age can help him fight this. I pray it’s contained. Take especially good care of yourself. He will lean on you . I would not be here today without my wife’s love and caring. A lot of us here n this camp..I’m not worried about your guy as much for he has you advocating for him. That’s spectacular. Still, we pray for the best ! These doctors give no promises or guarantee. Sometimes it seems like a crap shoot to who does well with any treatments??? Until he has this undetectable for a few years there is no real respite. It’s a long winded man eating disease . I say hit the pc from every direction from here on out . Diet exercise . The long game. He’s so young he could see a come soon. Staying positive and keeping him up emotionally is needed. I went trough some bad acting months totaling 3 yrs of misery for my wife. Somehow that cloud lifted ! Ask questions but take time each day to not think about pc . you’re both in the hardest part of this quest right now. Some have lived decades beyond worse dxs . I’m thinking your man can survive this! 🙏😔

[Dar1966 in reply to Hidden]

Thank you! I will definitely be with him each step of the way. It just seems like from the point of diagnosis to the point of surgery etc. it’s way too long. So scared it’s going to get worse in the meantime.

[Tall_Allen]

Pending bone scan/CT results, he does not have advanced prostate cancer. You may find more people in his situation at the following site:

healthunlocked.com/prostate...

I should also have mentioned that it is a good idea to get Jonathan Epstein at Johns Hopkins to look at the biopsy slides. It may cost $300 if insurance doesn't cover it but is well worth it. Just tell the urologist to send the slides to Epstein - it is a very common thing to do:

pathology.jhu.edu/patient-c...

And you will have plenty of time to meet with specialists and make a calm, informed decision. Prostate cancer progresses slowly while it is localized.

prostatecancer.news/2016/08...

Here is some info on the basics:

nccn.org/patients/guideline...

[Boywonder56]

Dont foget hifu....hes young ...if still in capsule...since it only in part of prostate..ta correct me ..if im wrong...i know its out if pocket

[Spyder54]

Prostate Cancer which is contained within the prostate gland is highly curable. Prostate Cancer which has escaped the Prostate gland and metastasized outside the pelvic region is highly incurable. Almost like 2 separate diseases. Substantially different results. I wish you all the best on scans that prove the PCa is mostly contained within the gland. All my best, Mike

[larry_dammit]

As my doctor would say. No one ever wants to have cancer But there has never been a better time to have it. 😢. Lots on new stuff out there coming down the pipeline 🙏🙏🙏🙏

[alperk]

At 54 I had positive biopsy and jumped to cryo surgery. In retrospect, I should have waited and tracked my PSA. Knew nothing of Gleason, etc at the time. However PSA stayed undetectable for 27 years then went to 0.3 and 0.6 for 2 years with OK MRI's. Unfortunately it jumped to 54 last summer and I am now 81, Stage 4 with bone mets. Feeling fine on Standard of Care (Lupron, Zytiga and Prednisone), PSA undetectable and hopeful to continue active lifestyle for many years. Diagnosis is scary but with current and improving medical care, you should look forward to long, happy future. Keep posting.

[LowT]

Has he had MRI of prostate?

[Dar1966 in reply to LowT]

Yes he has about 6 months ago. It came out in that mid area ( they called it a gray area). Nothing stood out. After his PSA levels continue to slightly rise he said he needed a biopsy.

[Tony666]

I was in a similar situation. 3 years ago. Gleason 9 but just a small bit. (3 of 12 cores but only 20% in those and mri did not show extra cap extension and nothing on ct/bone scans). Relatively young (61) and in good shape. So what to do? Gleason 9 suggests there may be a need for some systemic treatment (to address any escaped cancer cells) but I also wanted to avoid extensive radiation. I decided on an RP but with 6 months “intensive ADT” prior to that. The RP to get rid of the motherload and intensive ADT to mop up any escaped cells. It is an NIH trial but there is a similar trial at UCSandiego if you are on the west coast.

Very pleased with the result. The intensive ADT was tolerable, surgery went well. The intensive ADT was so effective that no cancer was found on the removed prostate (what they call a complete response). 2 years later, PSA remains undetectable and T has fully recovered.

Now, this protocol is not for everyone. Not all do as well. But it is a promising approach for those like us who have a small amount of very aggressive cancer with no indication that it is outside the capsule, and who want to do RP anyway. Something you may want to explore. Good luck.

[Dar1966 in reply to Tony666]

Lots of great information. Thank you! I just feel like from the time of diagnosis to the actual time of surgery and/or treatment it takes too long. We want to get things rolling. Don’t want this to spread anymore.

[ShipModeler]

In Dec 2021 I was diagnosed with PC. PSA 8.5, Gleason 8, Met to lymphs. I was given an injection of Lupron. Two months later began a course of 28 EBRT'S. Than started on Zytiga 1000 mg. For the past three months PSA has remained are .04. labs are all in normal ranges. This was a fairly easy to tolerate process. My OC is delighted with my progress. Lab follow-up every two weeks and a follow-up PET next month. I hope this helps.

[Dar1966 in reply to ShipModeler]

Thanks for the positive report I hope you continue to do well.

[Hidden]

Thus far good news, except for the Gleason 9. Be mindful of the term micro-metastasis. Excellent topic to discuss with your physicians.

I bring this up only because with my Gleason 7 (4+3) and a PSA of 6.8, and after primary treatment, I developed metastasis in my spine. My Research Professor of Genitourologic Cancer at a major medical school told me to “not second guess my primary treatment choice, it was too late as you most likely had micro-metastasis at original diagnosis of prostate cancer.”

Note: three months after primary treatment in 2003, my PSA never really came down; therefore I had monthly PSA tests and several nuclear bone scans. Consequently in a years, metastatic lesions were confirmed. Point is that I was able to bring early systemic treatment in 2004.

My last Lupron injection was in February 2010. I have been undetectable with a <0.1 ever since. I bring this up to not cause worry, but to be mindful. I wish the best of success in killing the little bastards.

Gourd Dancer

[Dar1966 in reply to Hidden]

Sounds like your doing great now!

[Magnus1964]

I was diagnosed at age 46 and I am still here.

[Dar1966 in reply to Magnus1964]

Excellent news! You give us hope

[Okay4now]

Before my RP in 2001, I was assured that the cancer was contained in the capsule. When my psa afterward was 0.1, 0.3, 0.6, etc, I was terrified! But as you can see, I'm still here 😁

I had radiation, then lupron, and now darolutamide; the cancer is still localized. In spite of whatever ill-informed choices, tantrums, etc, it has all worked out. For that, I am grateful to God. This is a great place for information and support. Thank you for joining us - welcome !!

[j-o-h-n]

You want positive insight? Well you've come to the right place. You can take what I'm about to write and place it in an empty mayonnaise glass jar and do not open it until the year 2057.

Your husband will be around to celebrate his 91st Birthday...So start saving up for his present. With all the new meds being developed and since Pca is a slow growing disease he will be around for so long that you will be sleeping in separate bedrooms. Please live your life..... and laugh....God Bless all of you.....(Don't forget to eventually open the jar)...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 06/08/2022 3:48 PM DST

[Dar1966 in reply to j-o-h-n]

Your response has made my day! Thank you for helping me stay positive! I will just be so happy when his scans are complete so we know what we are working with. Praying that even though he has one lesion Gleason 9 that we caught it early! Just hard to know exactly how long it’s been growing

[tad4]

Let me tell you about my experience. My Gleason was 4+5. Went straight on ADT (Zolodex). Surgery was not recommended as my Urologist believed I was a good candidate for Brachytherapy followed up by 23 sessions of EBRT. My PSA now, after 12 mths is .008. ADT has side effects noone wants, but it is effective. You must start the process with a PSMA PET-CT scan, and that determines your treatment regime. Stay positive, which is the most effective psyche in dealing with PCa. This site is valuable for getting the right advice and gives you the tools to educate and understand, thereby able to ask the right questions to your team of medical professionals. I am a 74 years young PCa guy who has every intention of beating this cancer. Good luck and stay strong.

[Dar1966 in reply to tad4]

Great information thank you