Post-prostatectomy cancer status + treatment

[MakeItRainbows]

Where we are in the story so far ...

* 46 yo, diagnosed with prostate cancer April 2023

* MRIs were negative, ultimately diagnosed via biopsy

* Gleason 3+4, last PSA 6.3, 6 cores with 3+3, 2 cores were 3+4

* PSMA PET Scan prior to surgery was clean

* Had RALP procedure on September 26, 3 weeks ago

Side effects seem manageable so far, but it's early days.

Unfortunately, my surgical pathology was not what we were hoping for. While the primary tumor was organ confined (negative margin), there was no seminal invasion, no upgrade in Gleason scoring (10-20% Gleason 4), they did find 1 of 8 removed lymph nodes had ... 2mm of cancer. It spread. They also found criboform morphology and "prostatic intraductal adenocarcinoma".

Frankly, I've been in shock and a degree of depression for days.

I found a service that will test the DNA of my sample against a cheek swab sample to rule out lab error. I don't expect to find there to be lab error, but it's relatively cheap in the grand scheme of things.

Likely I'm facing a very, very difficult decision: whether to pull out the hammer now, go after what could be remaining with everything we got (radiation, ADT, chemo, or subset thereof) or wait for signs of recurrence. The medical way of saying the same thing: adjuvant or salvage therapy.

I've seen 2 oncologists so far. Can you guess what they said? 1 said adjuvant therapy, the other said salvage.

1. Dr. Scholz, medical oncologist, thinks I should strongly consider, due to my age, adjuvant radiation and hormone therapy and even, possibly chemotherapy. If I was in my 70s, he said, a "wait and see" approach would be reasonable ("no brainer"). To be clear, Dr. Scholz is saying, even if my PSA comes back undetectable, he suggests treatment (this is what adjuvant means). It doesn't matter what my first PSA reading is.

2. Dr. Hsi, a well regarded radiation oncologist here in Seattle, claims that there's a growing consensus over the last 5 years showing no benefit to adjuvant radiation therapy over salvage radiation. (I asked him what studies -- he cited RAVES and RADICALS to those in the know). To put it rather crudely and probably unfairly (to him), it's kind of old school thinking now to say adjuvant is better. Waiting for biochemical recurrence (or outright failure, I haven't had my first PSA reading yet) prevents unnecessary treatment, and any treatment has risk.

I'm in a bit of a tailspin. I feel lost in the cracks of all this. I studied and studied, and it wasn't enough. Now I have to ... read and understand various studies on the efficacy of adjuvant radiation? It's all over my head. Am I going to intepret a study wrong and get my treatment wrong? I'm not a trained doctor here.

I'm 46 and am terrified of the idea of living for 20 years on various forms of hormone therapies and chemotherapies, of not being able to work again, or have joy again. Just being honest. It's hard.

Not sure what to do. If you have advice, been in a similar boat, or know someone who has, I'm all ears. Thanks for listening.

[Tall_Allen]

Positive pelvic lymph nodes is a certain indication for adjuvant radiation;

prostatecancer.news/2021/10...

Dr Hsi didn't understand that the patient characteristics in RADICALS-RT and RAVES did not include patients with positive pelvic lymph nodes.

[MakeItRainbows in reply to Tall_Allen]

Ok. That is helpful.

Some of these stats are scary. 14% all cause mortality within 10 years for those who did adjuvant radiation with "adverse pathology". Jesus. 14%?!

[Tall_Allen in reply to MakeItRainbows]

Yes, and as you can see, waiting for PSA to rise before salvage RT resulted in no improvement in all-cause mortality vs not having SRT at all, and doubled the all-cause mortality.

[MakeItRainbows in reply to Tall_Allen]

This doesn't seem like it matches intuition -- if your PSA rises, getting salvage radiation therapy does not help (according to this study)?

[Tall_Allen in reply to MakeItRainbows]

It matches my intuition. Waiting for PSA to rise will make you too late.

[MakeItRainbows in reply to Tall_Allen]

True, but rising PSA does not make you "too late" in all cases. It's just in these specific cases, according to this study.

[Tall_Allen in reply to MakeItRainbows]

Yes - particularly after positive pelvic lymph nodes have been identified, as is your case.

[Tall_Allen in reply to Tall_Allen]

I’m only addressing YOUR case, which is what I think you’re interested in.

[MakeItRainbows in reply to Tall_Allen]

Yes, fair.

[Lizzo30]

Hi MarkeltRainbows best thing now is to step back and try to wind down so you can do some research so as to make a choice of treatment you are comfortable with there is a good US site for guys with PCa I have been on there learning all sorts bc my husband has PCa inspire.com/groups/zero-pro...

[Tony666]

look, you know you will need radiation and ADT. It’s just a matter of when. To me, the choice of immediate radiation or waiting until psa rises is not the right way of looking at it. A better way is when you feel your body has sufficiently healed from surgery, and is ready for further stress. That could mean, for example, to wait for a year after surgery (eg not immediate and not when psa rises).

[MakeItRainbows in reply to Tony666]

What you’re saying I know, I only am recently realizing with help from others here. I have 1 adverse pathology, 1 lymph node, very small, but turns out to be a very significant one, sadly.

Leaning towards getting on ADT very soon to get it over with.

[Tigger2022 in reply to MakeItRainbows]

Just to address the “1 lymph node” thing: my husband was similar following his surgery in May 2022. But remember— there are lots of lymph nodes in your pelvic region. It’s not like the surgeon took out the *one* that had cancer in it. If there’s one, it means the whole lymph system in your pelvis likely has cancer in it.

I’m really sorry you’re facing this. My husband was 52 at diagnosis (he’s 54 now) and it sucks. I wish you all the best.

[OzzieJ]

Not exactly the same but similar situation. My guys hit me with chemo, radio, and 3 years ADT plus Apalutamide. They threw the kitchen sink at it due to young age and high risk factors. I’ve done one year of the ADT regime and finished radio 5 months ago. PSA is undetectable so the ADT is working. I’m still recovering physically but can get through my day and work etc. Life is not what it was and I’ve had to slow down but it’s still pretty good. I’m hoping that in 2024 I’ll have more energy as I recover from all the treatments. I’m sorry you are in this situation because it is very hard. But once you start whatever treatments you choose you should be able to get through them and out the other side. With a bit of luck after 3 years you will be done.

[cpl901]

i was diagnosed nearly the same G7 dicember 22 , did pet scan in june 23 wich was clear and surgery 27 of september 23. Had an MRI couple of days before surgery to have a good idea about the tumor location. As the Pet scan was clear they didnt took out lymphnodes. On the path report it says N0 no lymphnodes. Margin negativ. It says also infiltration in the nerves (dont know what it could be). I m waiting for my first PSA after surgery. I wouldnt rush in the next treatment, as the body is still healing. May be slower than yours as i m 57 yo. I m a bit confused : why did they took out lymphnodes as pet scan was clear ? That was why they didnt do it to me.

[MakeItRainbows in reply to cpl901]

I think removing lymph nodes is just standard operating procedure for many surgeons, perhaps for my very situation. Maybe I should be grateful?

[Stepping2]

Just to say I had my prostate removed in 2012. I am 75 years old now.

My PSA started to rise nine years later and so I had a series of 33 radiotherapy treatments.

I then had about 18 months of Hormone treatment, and now after a number of years, my PSA level has been negligible. I suggest you get good advice for a good Hospital, preferably teaching Hospital, which seem to be excellent in England anyway. Follow the advice. There are more up-to-date treatments now but do go ahead so I am living proof that it has worked

[MakeItRainbows in reply to Stepping2]

Thank you

[London441]

I had RP in June of 2019, adverse pathology, SVI, one positive node. 4+3. I got radiation, 4 cycles chemo, abiraterone and 18 months ADT. I didn’t wait, on advice of my MO at a major center of excellence. PSA undetectable since and my life has never been better. Increased gratitude comes with the future not being ‘assured’-eventually.

With a positive node do not mess around. TA is right about this. The ADT is to enhance the efficacy of the radiation. Take a full course of 18-24 months if you can hack it, which should be no problem if you are fit and strong. If you are sedentary and don’t exercise your youth won’t help you, and it will likely be onerous.

No guarantees, but your options are a world apart from what they would have been only 20 years ago. It’s that simple. Get it done!

[MakeItRainbows in reply to London441]

Thanks for sharing. Was your PSA detectable after RP?

[London441 in reply to MakeItRainbows]

It was not.

The skill of your surgeon and the location of your cancer are factors that will determine whether you are undetectable at first reading. Detectable PSA post op is obviously an adverse feature, so you don't want that- but whatever you get you get so don't freak out either. Detectable PSA after surgery is common unfortunately. You still have a lot of positive choices ahead regardless.

[conbio]

You are young and thus, will heal well and tolerate the ADT and radiation - and with positive node you should nip this now. I'm 67 and though situation a bit different (G 4+5,EBRT, ADT, Brachy) I had external radiation and ADT for 18 months. A bit of a drag but I kept active.

You can do this. Hang in there.

[MakeItRainbows in reply to conbio]

Thank you.

[bean1008]

A bit similar here…diagnosed at 60 w. ith a rising PSA after RP in Dec 2017. PSMA after lit up some pelvic lymph nodes…choice of radiation or surgery. Doctor sold me on the surgery…now that I know more I know that there was likely more hiding and he wasn’t giving impartial advice. New scan found two nodes and a spot in hip socket. Both scans out of pocket back then…not yet FDA approved. after the lymphadenectomy my PSA began to rise again and I’m now on Lupron, Abi and pred. PSA has been undetectable since Feb 2021. You can read all you can but there is still stuff that’s going to slip past you or unavailable to all but the experts. It was a tough call skipping the radiation but so far it has worked for me. Just had my 66th birthday and other than the fatigue. I’m doing pretty well. Retired early and have been doing lots of travel internationally and to see family around the country. Life is a gift!

[MakeItRainbows in reply to bean1008]

Glad to hear you are doing well. Nice work on early retirement. Would be quite early for me to retire and do not quite have the money to do so 😀 but maybe I’ll win the lotto

[bean1008 in reply to MakeItRainbows]

Good luck on the lottery! I kind of hit it in a way… I was out on a medical leave after my lymph node surgery when my company offered an early out package due to over staffing during Covid. So they paid me to retire and I got to keep my healthcare to 65!

[MakeItRainbows in reply to bean1008]

Huzzah!

[Lost_Sheep]

I am having my prostate out tomorrow 10/24/2023. 75 years (almost) PSA 12, Gleason 4+3, T3bN0M0, so very similar to your situation except for the age and being a little bit worse in prognosis, but not by much. I will be following your story closely.

I chose surgery despite the long odds of not having SOME metastasis and will not be surprised if I have a lymph node or few with cancer. But I will insist on all the testing I can get on the removed tissues for cancer so I can determine (as best we can) how aggressive the cancer is. How fast we can expect it to grow/spread. That testing will determine how soon (if ever) I need to have follow-up treatment. Frankly, radiation scares me. I am hoping that medical science will come up with a more sophisticated solution than radiation. (Here is how I see the options now; if RP is like using a club, radiation is like using a shotgun. I would like to use a sniper rifle.)

Like you, I have studied my tail off since notified of my diagnosis in April 2023. First scheduled for robotic prostatectomy, we decided (because of prior surgery) that an open prostatectomy would be preferable, so rescheduled. Now, I probably (like you, certainly) have a lot of decisions to make. But one set of decisions you can make that do not involve doctors is to make lifestyle changes. Most cancers can be slowed (some, even say cured) by such changes. Diet, exercise, avoiding toxins, seeking out healthy choices (e.g. antioxidants), etc. Some of those changes are not easy to maintain. (Believe ME!). But worth considering while you ponder what medical options to pursue.

I beg your pardon for rambling. My surgery is tomorrow. I a hoping that your experience will show me a pathway. I am praying for the best possible outcome for us both.

[MakeItRainbows in reply to Lost_Sheep]

Well, best of luck on the surgery. I’m sure it’ll go great. Enjoy the drugs when you wake up. Feel free to hit me up when you’re done to tell me how things went. I hope they find nothing at all in the surgical pathology.

[bean1008 in reply to Lost_Sheep]

Sheep that is exactly what I did… I did not want radiation as I had heard too many horror stories about the results for some. I had a prostatectomy and then a scan showed some more lymph nodes that were missed so I had a second surgery 18 months later. I am now on ADT drugs and living a fairly normal life granted with some fatigue. My PSA has been undetectable since starting the drugs almost 3 years ago and my oncologist is very pleased with how my body has reacted to them. There’s people out there that have lived another 10-15 years on ADT and I’m hoping I’m one of the same! I’m 66 and hoping to see 80! Best wishes to you!

[MakeItRainbows in reply to bean1008]

What was this second surgery like? How many lymph nodes were removed?

[bean1008 in reply to MakeItRainbows]

I’m trying to remember…I think there were five that showed in the PSMA scan. The surgeon opted to take out over a dozen…maybe more.

[MakeItRainbows in reply to bean1008]

Got it. I also dislike the idea of radiation, but certainly haven’t ruled it out. The idea that you could experience symptoms like 10 years out .. frightening.

[bean1008 in reply to MakeItRainbows]

I think some people had great luck with it while others did not… And it seems like there’s advances in Radiation all the time

[Hidden]

Hi Makeit! I had IDC in my pathology as well after RP. My surgeon/uro said he's seen it a few times and it's never changed the course of treatment since your prostate is out. My last biopsy was 1 core of 14, Gleason 8 and it was my 3rd biopsy over almost 2 years. I had a mess of urinary issues for years with 3 lesions, BPH and Prostatitis diagnosis. No cancer was ever found in the lesions and my doc put 3 cores into each lesion. No mention of IDC on any of my 3 biopsies. Anyway, my RP pathology at the hospital was 4+3(60% pattern 4), <10% of PV(55cc) and IDC present, all margins clear. Only took 2 nodes, both clear. Sent pathology to JH and they said 4+4(65% pattern 4) and no mention of IDC. Go figure. PSA was 9.1 at time of surgery.

So I'm out about 20 months now, all undetectable tests which for me is <.02. I never had any incontinence and I never did a kegel. Well not intentionally anyway. Erections took 8 months and it was hard work...no pun intended. My surgeon has a rehab plan and it worked very well. My penis is the same size as before, no difference. ~16-17 months I no longer needed ED meds and I used them since 2017. I know RP is rough because there are 2 factors that a lot of guys overlook...the surgeon and the patient condition. Lots of potential for side effects. I had 4 consults and all agreed with my urinary issues, fitness level and due to the reputation of the surgeon I consulted, they also felt RP was the right move for us....wife included. 2 RO's, my surgeon and another surgeon that still does the procedure "long-hand".

Anyway, I was 60 y/o at the time of my procedure and I just got moved to 6 month tests so I'm doing great. Very lucky, thankful and satisfied with my choice. If I didn't have the urinary issues I think I would have went SBRT or perhaps even Brachy with additional treatment. My prostate was so messed up I had to self-cath a few times and hadn't slept for more than an hour and a half a night before getting up to void. Miserable 2 years. Now I sleep like a baby...and no, I don't mean in diapers!! Good luck on your journey sir...I only chimed in to share my IDC story.

[MakeItRainbows in reply to Hidden]

Thanks for sharing your story. I'm glad you are through to the other side and doing well.