Hey everyone i am new to the forum ,in Nov I was dx with APC Gleason 7 grade group 3 (4+3) PSA 40 had RP Dec 28th doc cleaned me out taking everything including 12 lymph nodes 7 came back positive CT before surgery was clean except one enlarged lymph node which he got! Bone scan was clean. I’m 47 years old and was told that I would need treatment after RP I’m sure hormone therapy and chemo is next and maybe RT for prostate bed. Just had another CT scan waiting on results of it. I have met up with RT oncologist and he set me up with MO which I will meet up with soon. He said their team at Integris Cancer institute in OKC will discuss my case and come up with a treatment plan! Not sure what I should do next ,he said from the looks of it that I was in between stage 3 and 4! I have been reading a lot on here and can tell that this is the place to be for knowledge and support. I am wondering when they will do a PET scan ,I would like to be aggressive in my treatment hoping I have some years left in this fight!!
What’s next after having RP - Advanced Prostate...
What’s next after having RP
CLcarter,
If you do get a PET scan, try to get a PSMA PET scan. They are much more accurate and can do a better job of helping to guide treatment going forward. PSMA scans are FDA approved in California at UCLA and UCSF, but not in other parts of the country. However, you can still do some on-line research and may be able to find a PSMA scan in other parts of the USA as part of a "study."
The best to you...
Six weeks have already passed since you had RP, consequently, you must already had your first PSA test. What was the count? This is of utmost importance regarding further treatment. In case your Dr advised waiting for 3 months before first PSA test, this is enough a reason to ditch him/her. (7 out of 12 positive nodesis not child's play) .
My urologist doesn’t have me scheduled to take another PSA until April 14th I met up with the MO in Tulsa he referred me too on Jan 19 ,he said I was early to see him being that I just had surgery and that I needed to heal up first before any treatment. So anyway I wasn’t comfortable in Tulsa ,the place was dirty and reminded me of a bus station the MO showed up in jeans said it was Friday and only spent about ten minutes with me. I felt like I was just another number,so switched everything over to Integris in Okc! I went there to my first appointment on Jan 26th about 4 weeks after surgery and the RO ordered a PSA right off which I thought was to early and it came back 35 ,I felt like I was in better hands all ready,the place was super clean and just had a whole different atmosphere and demeanor about it,the RO spent over an hour with me and I felt way more comfortable. Most say 6to 8 weeks for PSA to filter out confused about it! I meet up Tuesday with my new MO and hopefully their team have came up with a plan.
Is it 35 or .35? Starting from 40 a typical 4 weeks PSA decay should had got 0.15 or lower.
My first psa ever tested was 31 in august then 36 in October and 41 in November now he said it was elevated still at 35 which he thought it would be but wanted to check it anyway at 4 weeks,but now you have my brain twirling thinking it could have been .35 but if it was she would have said that it went way down
The next step is salvage RT to all of the pelvic LNs. I'm surprised they did an RP at all with a known enlarged LN. You will need 2-3 years of ADT with the RT (no need for chemo unless you have distant metastases). Hopefully, that will cure you.
A PSMA PET scan is only available at UCLA or UCSF and your insurance may not cover it ($3000). The purpose would be to find any distant metastases. If there are any distant metastases, they would not bother with whole pelvic salvage RT, but would skip straight to systemic therapy (ADT or chemo).
BTW- since they removed cancerous LNs, ask for an IHC and genomic analysis of it, if there's enough tissue.
Thanks for your input Allen ,I will know more Tuesday and I will ask them to give me an IHC analysis and genomic of it
".. team at Integris Cancer institute in OKC will discuss my case and come up with a treatment plan!" I expect this will be almost the same that Allen recommended.
"I would like to be aggressive in my treatment hoping I have some years left in this fight!! " You should also try to avoid side effects. These can spoil your remaining years. Overtreatment does not improve the prognosis. Because you have no bone mets I would estimate your survival to be over ten years.
IF your cancer is in the Pelvis only it may still be curable. Was cancer found in the seminal vesicles??? This is a site where authorities feel PCa (Prostate Cancer) can get into the bloodstream .... if there is cancer in the seminal vesicles it is more likely to have spread beyond the pelvis, if cancer is not in the seminal vesicles it is less likely to have spread beyond the pelvis .... with your clear CT before surgery neither of these is certain.
I would consider getting RT (Radiation Treatment) in the pelvic & iliac regions & not just the prostate bed.
If your PSA remains above 0.10 to 0.20 Post-RT you likely have systemic disease beyond the Pelvis even if it cannot be seen on imaging (CT, MRI, PET, PSMA, Bone Scan). Below 0.03 PSA Post-RT residual disease is less likely but again this is not certain.
Consider an Axumin-PET scan or a PSMA scan (PSMA if your PSA is high enough) PSMA is more sensitive (finds more cancer) vs PET but you will likely have to pay for it yourself ..... maybe $3,000 to $4,000 in the US. Ask your RO (Radiation Oncologist) if he would like to see either of these before RT. Be aware it is likely MUCH easier, from an availability standpoint, to get an Axumin-PET study than a PSMA study.
Be aware of possible side effects of medications & RT but remember the greater problem is the PCa. Consider taking the lowest risk.
My RO was a big believer in the idea that if one is working toward a goal one is less likely to experience RT side-effects ..... IMO this might be true to minimize medication side effects as well .... having a goal, a purpose for living, cannot hurt.
The above is my experience (I had Surgery with RT) & opinion .... I hope it is helpful.
GOOD LUCK
Yea you need to have. PSMA PET scan and not just CT and bone scan to know with higher certainty whether there is or is not any cancer sites beyond the pelvis. If not you can have whole pelvis RT with 1-2 years of ADT and possibly be cured. If there are mets beyond the pelvis then such treatment is futile and you must go for systemic treatments to treat the whole body. 🙏🏻 Welcome.
Thank you for the advice,appreciate ya MateoBeach
Greetings CLcarter,
Please tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?
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THANK YOU AND KEEP POSTING!!!
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 02/17/2021 7:19 PM EST
Hi CL, I am in your vicinity. Went to OU medical. I was fortunately not node positive, but stage 3b. If you need to talk, let me know.
You are a mirror image of myself 20 years ago. Only difference my lymph nodes were taken out and all were cancer free. Everyone has to make choices in the post op world. Things have changed so much in 20 years, I had no other treatments and am still here at 69. Good luck on your journey!
I had a similar dx but much higher PSA at 156 so no RP. All oncologists were convinced there was more disease than CT sscan and Bone scan showed but insurance would not approve Axumin scan and the docs said it wouldn't change my treatment anyway which in hindsight was BS. I do know that NCCN guidelines determine treatment based on CT and Bone s only on initial treatment per SOC and that's why the Axumin was not approved. They tried to biopsy a lymphnode but it was a couple months after the start of ADT and they couldn't find one in the area they were looking despite looking for 20 minutes with an ultra sound. I had a pelvic MRI and it showed all the clear results of ADT, everything suspect from CT scan was getting smaller.
So I got 80gy in 44 treatments and have been on Lupron and Zytiga for a year and 1/4. I get my 7th shot in 3 weeks and last shot in late June early July, in Oct I stop Zytiga provided all things remain the same as they are now. Then I see what happens as my T comes back. I suspect your path will be similar. I recommend you stay as active and fit as you are able. I am a bit older than you but was active before my dx and increased my activity level after it. I feel fairly confident it is why I have not dealt with the main side effects of ADT, fatigue, hot flashes, brain fog. Of course I have experienced all the physical changes and loss of libido but that has not been a major issue for me and my wife.
Stay positive and sorry to have to say welcome to the club, but your a member now so welcome.
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