Advice - Surgery or Radiation?

[Blue1320]

Hi all, apologies for the long post, hoping to give as much info as possible.

Background:

Diagnosis: Unfavorable int-risk prostate cancer (T2a, Gleason 4+3, PSA 5.2) (I spoke to a surgeon today who said it was T3a so now I am confused)

Age: 59

PSA 5.2 (H) 01/31/2024

PSA 4.4 (H) 11/06/2023

PSA 4.9 (H) 10/10/2023

PSA 2.8 10/22/2019

PSA 1.7 07/21/2017

PSA FREE 0.6 01/31/2024

PSA % FREE 11.5 (L) 01/31/2024

IMAGING:

4/26/24 PSMA PET: Impression

1. LOCAL TUMOR: Mild tracer activity in the left prostate.

2. REGIONAL NODAL DISEASE (N stage): No positive regional lymph nodes (miN0).

3. DISTANT METASTASIS (M stage): No distant metastasis (miM0).

Tracer avid axillary, iliac, obturator, and inguinal lymphadenopathy. While this is not consistent with metastatic prostate cancer, it is concerning for a secondary malignancy.

Narrative

PSMA-LIGAND PET/CT SKULL VERTEX TO MID THIGHS

** HISTORY **:

59 years old, newly diagnosed risk prostate carcinoma, with concerning for pelvic metastatic disease on CT. Initial treatment strategy.

** TECHNIQUE **:

RADIOPHARMACEUTICAL: F-18 DCFPyL (piflufolastat) 9.9 mCi IV

Tracer uptake time: 65 minutes

PET and low-dose, noncontrast CT (used for attenuation correction and anatomical localization; not optimized for visceral and vascular evaluation) images acquired from skull vertex to mid thighs. miN/M staging scheme reported as per E-PSMA standardized reporting guidelines v1.0 (Eur J Nucl Med Mol Imaging 2021; 48: 1626-38); miT-stage is generally not reported as this assessment may be unreliable on basis of PET/CT and would be more reliably assessed anatomically with mpMRI.

CTDI: 2.6 mGy; DLP: 26810 mGy-cm

COMPARISON: CT 4/5/2024, MR 2/27/2024

** FINDINGS **:

PROSTATE

Tracer-avid lesion focality: Unifocal, left.

Overall highest intensity of lesional tracer uptake in the prostate gland: SUVmax 2.9, visual uptake score = 1 (>/= blood pool, < liver intensity)

Seminal vesicle involvement: None clearly identified (though PET/CT may have lower detection sensitivity / accuracy than mpMRI).

Other:

REGIONAL LYMPH NODES

Internal iliac nodes: No tracer-avid nodes.

External iliac nodes: No tracer-avid nodes.

However, there are non-tracer avid iliac chain lymph nodes. The largest is a 15 mm right external iliac node on image 260.

Obturator nodes: No tracer-avid nodes.

However, there are non-tracer avid obturator lymph nodes. The largest is measures 10 mm, image 256.

Presacral nodes: No tracer-avid nodes.

Other pelvic nodes: No tracer-avid nodes.

DISTANT METASTASIS

Common iliac nodes: No tracer-avid nodes.

Retroperitoneal (para-aortic, aortocaval, precaval) nodes: No tracer-avid nodes.

However, there are non-tracer avid bilateral inguinal lymph nodes. The largest is a 14 mm, image 27.

Inguinofemoral nodes: No tracer-avid nodes.

Supradiaphragmatic nodes: No tracer-avid nodes.

However, there is bilateral non-tracer axillary lymphadenopathy, measuring up to 15 mm in diameter.

Bones: No tracer-avid or destructive osseous lesion.

Liver: No tracer-avid lesion.

Lungs: No tracer-avid nodule or mass.

OTHER FINDINGS

Vasculature: Limited evaluation without IV contrast. Coronary and aortic calcification. Normal abdominal aortic diameter (<3cm)

4/5/24 bone scan: No scintigraphic evidence of osseous metastatic disease.

4/5/24 CT a/p: Bilateral inguinal and external iliac lymphadenopathy, concerning for metastatic disease

3/21/2024 Biopsy - PATHOLOGY:

Collected: 3/21/2024 Case #: SRFS24-5219

A. PROSTATE, LEFT APEX, NEEDLE BIOPSY-- PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3 + 4 = 7 (GRADE GROUP 2), INVOLVING 1 OF 2 CORES (TUMOR MEASURES 7 MM IN A 13 MM CORE).

B. PROSTATE, LEFT MID, NEEDLE BIOPSY-

-- PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3 + 4 = 7 (GRADE GROUP 2), INVOLVING 1 OF 2 CORES (TUMOR MEASURES 6 MM IN A 10 MM CORE)

-- PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3 + 3 = 6 (GRADE GROUP 1), INVOLVING 1 OF 2 CORES (TUMOR MEASURES 5 MM IN A 15 MM CORE).

C. PROSTATE, LEFT BASE, NEEDLE BIOPSY

-- PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3 + 4 = 7 (GRADE GROUP 2), INVOLVING 2 OF 2 CORES (TUMOR MEASURES 3 MM IN A 12 MM CORE; TUMOR MEASURES 3 MM IN A 15 MM CORE).

D. PROSTATE, RIGHT APEX, NEEDLE BIOPSY-NEGATIVE FOR MALIGNANCY

E. PROSTATE, RIGHT MID, NEEDLE BIOPSY-NEGATIVE FOR MALIGNANCY

F. PROSTATE, RIGHT BASE, NEEDLE BIOPSY-FOCAL GLANDULAR ATYPIA

G. PROSTATE, TARGET 1 LEFT APEX LATERAL PERIPHERAL ZONE,

-- PROSTATIC ADENOCARCINOMA, GLEASON SCORE 4 + 3 = 7 (GRADE GROUP 3), INVOLVING 1 OF 3 CORES (TUMOR MEASURES 8MM IN A 10 MM CORE).

-- PROSTATIC ADENOCARCINOMA, GLEASON SCORE 3 + 4 = 7 (GRADE GROUP 2), INVOLVING 1 OF 3 CORES (TUMOR MEASURES 6 MM IN A 10 MM CORE).

-PERINEURAL INVASION

2/27/24 MRI prostate: 1.6cm PI-RADS 5 lesion in left mid and apical peripheral zone; vol 19.2cc; Nonspecific inguinal lymph nodes measuring up to 1.4 cm on the right. 1 cm low left pelvic sidewall lymph node. 9 mm right pelvic sidewall lymph node

The radiologist suggested 3 markers to be inserted with 20 visits of external beam, also mentioned something else that I do not recall the name of but 5 visits with more radiation each time, both combined with Lupron for 6 months.

The surgeon suggested surgery non-nerve sparing on the left as there was PNI but could spare the right with pelvic lymph node dissection.

Of course, I have all this lymphadenopathy and they mentioned a secondary malignancy which is just great to add on top of what I was originally stressed out about. Has anyone ever had this arise?

Would love to hear your thoughts/ suggestions/ advice on the next steps moving forward.

[Blue1320]

Tall_Allen - it seems that you are very knowledgeable and give great advice, would love to hear your thoughts. PS I was the one with the enlarged Ingunial Node prior to PSMA on a previous post a week and a half ago.

[Tall_Allen in reply to Blue1320]

The lymphadenopathy (enlarged lymph nodes) with no PSMA activity is concerning. You may want to talk to an interventional radiologist to biopsy an inguinal lymph node and maybe an iliac lymph node too. IDK if there is a secondary malignancy, or a type of PCa that doesn't express PSMA, or maybe just a prostate infection, since they are bilateral.

If the enlarged lymph nodes are because of non-PSMA-avid PCa, it is important to know that, and will affect all treatment decisions.

The mpMRI does not mention extraprostatic extension, so IDK why your doctor thinks it is stage T3a. You should ask him- it makes a difference.

[Xavier10 in reply to Tall_Allen]

TA, what does "non-tracer avid" mean? I mean, if the PSMA was avid, that's probably PCa, but what is "non-tracer avid?"

[Tall_Allen in reply to Xavier10]

It means that the PSMA tracer could not find PSMA protein on the cell surface. Some prostate cancer does not express PSMA.

[Xavier10 in reply to Tall_Allen]

so if it was that an FDG Pet would be appropriate, I guess? Then that would rule it out. But that would only be 5% of cancers, wouldn't it?

[Tall_Allen in reply to Xavier10]

Xavier, you use the words "it" and "that" without clear referents. Please clarify what you are asking.

"so if it was that an FDG Pet would be appropriate, I guess? Then that would rule it out. But that would only be 5% of cancers, wouldn't it?"

[Xavier10 in reply to Tall_Allen]

I mean if “it” and “that” to mean PCa that doesn’t show up on PSMA scan. I got that from a video I watched that’s referenced way down in my answer below at the end. She seemed to say that would be only 5% of PCas. Maybe there’s some others.

[Tall_Allen in reply to Xavier10]

Some kinds of prostate cancer don't express PSMA.

[Blue1320 in reply to Tall_Allen]

Hi Tall_Allen , thank you for responding. The radiologist mentioned potential Lymphoma for the lymph nodes, which would suck on top of PCa. However PSMA activty that you mentioned, what is the normal SUVMax on a PSMA for something positive? When I was with the radiologist, he did show me the PSMA scan and on the right side it was slightly lit up. I am a bit confused on my results "Tracer-avid lesion focality: Unifocal, left. Overall highest intensity of lesional tracer uptake in the prostate gland: SUVmax 2.9, visual uptake score = 1 (>/= blood pool, < liver intensity)". Since there was avid tracer in the prostate, would it be usual for spread not to produce PSMA when the prostate was lit up on the left supporting the PCa diagnosis? Also regarding your last remark, I dug into the paperwork and on the MRI on a separate area it mentions this - " CANDIDATE LESION #1 -Location: Right posterolateral peripheral zone from mid gland to apex -Image Identifier: (series 6, image 16) (series 450, image 13)-Size: 1.6 x 0.6 x 0.8 cm -T2: Circumscribed homogenegous moderately hypointense confined to prostate, >1.5 cm. Score: 5.-Diffusion: Focal markedly hypointense on ADC and hyperintense on high b-value DWI, >1.5 cm. Score: 5. -Dynamic Contrast Enhancement: Negative. -Extracapsular or seminal vesicle invasion: Broad capsular contact suggesting at least microscopic extracapsular extension with focal area of bulging of the capsule concerning for macroscopic extracapsular extension. This location raises concern for possible neurovascular bundle involvement. -PI-RADS Score: 5". The DRE was T2a done at biopsy, but surgeon suggested T3a.

[Tall_Allen in reply to Blue1320]

That's not PSMA avid. Lymphoma is possible, but you will know for sure when you biopsy.

[Justfor_]

You have to understand that you are not shopping for a car that you will drive yourself, but, for a taxi service. If you failed to get my drift, RP performed by surgeons that have 5000 procedures under their belt, routinely use frozen sections and don't change subject when asked for their personal statistics are preferable to ROs that operate 10 year old linacs, and will let their team pull the whole gig. On the flip-side, ROs that have access to the latest MRI guided linac, do the planning themselves using the latest planning software and will be available for any last minute change are preferable to surgeons that will "multitask" a number of easy procedures concurrently. So, jumping back to my opening parallel, it makes no sense to inquire regarding the car of the year 2023. You need to compile objective assessments on the taxi services you have the tel number of.

[Blue1320 in reply to Justfor_]

Thank you, great way to look at it!

[cpl901]

surgery is a non toxic way, but has immediate side effects. I did it and side effects are slowly gone (continence ok, potency, work in progress). I hope the story stays here, no salvage RT no ADT. Like @Justfor says you dont buy a car but hire a taxi. But in case of surgery you can help, bringing a body in healthy condition. You are young, take care.

[Blue1320 in reply to cpl901]

Thank you for your input. I do hope that your story ends there. The ADT sounds terrible just given my lifestyle, however anything I chose I will have to change and acomodate.

[LongevityAT]

I was also unfavorable intermediate risk and eventually chose radiation with a top RO at UCLA (though I live in GA) on a ViewRay (confirmed this week they are operational on the ViewRay again). For every doctor I met with in determining my path (3 surgeons and 4 RO's), I had one thought in mind. Since surgery or radiation had similar outcomes in terms of the cancer, my choice was going to be based on what path had the lowest chance of long term side effects. I can deal with anything short term and was more focused on long term.

I know for everyone of us, our situation is different, and for me, radiation combined with ADT was the clear and easy choice. I'm 13 months post radiation with ADT ending 7 months ago and as of today, I actually feel better than the day before I knew I had PC. Mostly because cancer helps you focus your life and mindset and to live in the present moment. Otherwise, life could be hell with anxiety and depression.

My advice is to gather all the information you can through second opinions and have doctors at least one center of excellence as part of the process.

[Blue1320 in reply to LongevityAT]

This is what I needed to hear, it is how I feel but not sure how to express it. I can deal with short term, but long term is a big deal especially since my hope is to have more life to live after this. This may seem like a silly question, and not sure your provider, but how do you meet with different surgeons or Radiologists? I am with Kaiser and they are very slow in appointment times, for example my first elevated PSA was found in November and I did not get a biopsy until late March and now its taken a month to finally speak to a urologist, RO and Surgeon. Do I need referrals or can I pay out of pocket, not sure if you have any insight on this.

[Bruins11]

I had RP September of 2018, Gleason 3/4. In hindsight I definitely would have done more due diligence concerning the radiation therapy.

The good news is the cancer is gone with undetectable PSA after almost six years. The bad news is that I’ve been dealing with mild incontinence , ED, ever since. So I would strongly suggest that you thoroughly check out the radiation option before you pull the trigger.

Best of luck !

[Prostatepete]

I opted for Rad and Lupron only saying to show I’ve been down the road. Read everything you can get your hands on. Consider that if surgery doesn’t have the desired outcome you may be put on ADT anyway.

[Blue1320 in reply to Prostatepete]

How is ADT to you?

[doc1947g]

I was 72 years young with a PSA of 20.4μg/L and a GS(4+3=7)Grade4.

I had VMAT-RT 3Gy X 20 fax = 60Gy and ADT (Lupron Depot 22.5mg/12weeks X 2) in 2020.

Now at 77 years young, my PSA = 0.01μg/L.

No SE. Life is great 😊.

[Blue1320 in reply to doc1947g]

SO glad to hear this! How did you deal with Lupron? In your experience how was it?

[doc1947g in reply to Blue1320]

A little bit of HOT FLASHES. But my testosterone never came back.

Last one = 2.8 nmol/L - 80.7576 ng/dL (5.2à 23.7nmol/L 86.455 à 789.625ng/dL)

Probably due to my age: 77 years young.

🐒🐵🙉🙈🙊

[Teddski]

Do not use Lupron if you have any heart condition. I have a replaced mitral value that is doing fine, but the Lupron almost had deadly affect. The heart beats with every beat sending oxegenated blood through out the body at about 85%. The Lupron damaged my heart so only 43% of the blood was being pumped through my heat. My cardiologist told me the at 41% it is conceded heart failure. I was have a terrible time walking up steps, because the oxygenated blood was not reaching my lower leg muscles. However, I got off the drug and my heart returned to normal.

[Oatmeal2]

Welcome to the forum but sorry you had to join! It’s not an easy decision. My husband and I went back and forth between surgery and radiation but opted for radiation and ADT. He was 64 and diagnosis with a more aggressive Gleason 9 and a small pelvic lymph node. He made it through 26 sessions of IMRT and is on 2 years of ADT with Firmagon injections. So far, side effects have been minimal with undetectable PSA.

[Blue1320 in reply to Oatmeal2]

Great to hear that for you and your husband! What side effects is he coping with?

[Oatmeal2 in reply to Blue1320]

Mostly just hot flashes from the ADT. I think the Firmagon has less side effects than Lupron based on what I have read. But it is a little less convenient with monthly injections. During the radiation he had some temporary side effects with urinary urgency and some diarrhea but those side effects subsided. He says that exercising and staying hydrated helps with the side effects.

[fast_eddie]

Radiation is the less invasive option with fewer QoL ramifications. Having had TURP surgery 10 years prior to diagnosis I was told I wasn't a good candidate for surgery and was steered toward external beam radiation. I chose HIFU instead. I had to go out of state and out of pocket.

[lpol83712]

A biopsy of both axillary and inguinal nodes would sort out the cause of the lymph node enlargement and whether you are dealing with one or two different diseases. Surgery is not an option if there is axillary cancer from prostate. You need to know w hat is present before treating it. Axillary lymph node involvement by prostate cancer without extensive bone involvement seems. Unusual

[Blue1320 in reply to lpol83712]

Agreed, the surgeon suggested having nodes removed during surgery and test for disease.. Like maybe I should just do a biopsy first to confirm rather than get an invasive surgery done just to find out I should have had another treatment.

[BettyandBob]

Hi Blue -- Your situation sounds almost identical to mine, but I will spare the details and get right to the curative steps I took.

Given my age at the time of my diagnosis, my surgeon recommended robotic radical prostatectomy, non-nerve sparing on the left side. Following surgery, my PSA was undetectable for 13 months (0.01). It started inching up -- and when it was 0.3, I had another chat with my surgeon. A CT scan was done and images showed "suspicious activity" in lower pelvic lymph nodes. I rolled the dice, thinking that could be the cause of the increase in PSA. It wasn't though -- after removing more lymph nodes, the pathology report came back Negative. That meant that there were still cancer cells in the pelvic area.

Cancer recurrence is always a possibility. I was pissed off, but took the situation in stride. So, my next step was 6.5 weeks of radiation treatment combined with 6 months of ADT. I finished the radiation phase on February 13, 2024, PSA was 0.01. I will complete ADT on May 18th. Can't wait either -- one of the major side effects of hormone replace therapy is hot flashes/night sweats.

I'll get another PSA test in July and again, three months later, in the fall.

You're a young guy and from all the research I did after my diagnosis (and nearly identical Gleason score to yours), I decided on surgery. Radiation was always my next step if recurrence came into play. I was told,and my research suggested that older patients (75 plus) might want to reverse the order. I just wanted to get the cancerous prostate removed (8 of the 12 cores biopsied were cancerous) and a family history of BRCA2 confirmed the surgery was going to be my first move.

Hope this reply helped and I wish you well on your journey.

[Blue1320 in reply to BettyandBob]

Thank you for posting this reply, it is extremely helpful and as unfortunate as it is, it is nice to know I am not alone, especially with similar scores and details. Sorry to hear about the reoccurrence and additional treatment, however it does seem that it is so far successful! Wishing you and nice soon send off of ADT! BTW, my RO said Lupron is a single shot for 6 months with a couple weeks in the beginning with some pills, does that sound accurate?

[LongevityAT in reply to Blue1320]

I am on a Medicare PPO plan that allows me to go to any doctor who accepts my plan and I can do so without referrals. There is probably a limit to how many visits I could schedule, but never had an issue with Aetna paying for the office visits.

I'm not sure how you manage visits through the Kaiser system but know there have been good discussions on Kaiser on here. Search Health Unlocked for Kaiser and if you don't find answers, I would start a new thread on the topic.

If at the end of the day Kaiser does not meet your needs for second opinions, maybe paying out of pocket for the visit makes sense, at least in terms of information gathering.

Good luck as you navigate this part of your journey. Continue understanding and evaluating your options through the long term side effects lens.

I found it very helpful, as much as you can, to have growth mindset towards this process and not limit negative thoughts as much as possible.

[BettyandBob in reply to Blue1320]

Your RO is correct about the Lupron injection frequency.

[EaNa]

I faced the same question nearly 3 years ago at age 65. My care team consisting of a couple of urologists and a radiation oncologist had recommended surgery based on my circumstances but I had the option. After much research and consideration I decided on the Robotic Assisted Laparoscopic Prostatectomy (RALP) first thinking that if that wasn't successful I would still have salvage radiation as a second treatment option. Surgery seemed to offer the best (or most tolerable) outlook for side effects in MY case and based on MY priorities. The surgery went fine, no significant side effects and I was back to my regular activities within a couple of months, however, the post operative biopsy showed positive margins. Two years after surgery, PSA levels went from undetected to 0.2 which triggered salvage radiation with 6 month ADT. This was a year ago and so far PSA remains undetected. Could I have avoided the surgery and gone with RT instead? If I had known that there would be positive margin or any indication that the PC wasn't entirely contained within the prostate itself I would have gone with RT instead. Is it possible to confidently determine that before a decision is made? I leave that up to your research but that would be my advice. A friend of mine with very similar circumstances (initial conditions) decided to go with RT and has been cancer free for over 10 years, he had no margins. Also, his side effect priorities were different than mine.

[Blue1320 in reply to EaNa]

Can I ask what your priorities were as far as side effects?

[EaNa in reply to Blue1320]

I have suffered most of my adult life from Irritable Bowel Syndrome (IBS) and although Radiation Therapy for prostate cancer is not necessarily contraindicated for someone with IBS, it can irritate the bowels leading to symptoms like diarrhea, cramping, and urgency. These can worsen existing IBS symptoms and it might only get worse with age. My understanding is that side effects from surgery are more immediate following surgery and recovery is over time, whereas it's the other way around with radiation, the side effects tend to be mild at first but worsen with time. Right or wrong, I believed I might be able to avoid worsening the IBS if the PC could be resolved by surgery only. Unfortunately, I ended up needing RT in the end anyway, but the urologist was giving me a 75% chance of not needing it. It's always a gamble no matter what they tell you. As for the other potential side-effects, it was a choice between the risk of having them now and recovering over time or not having them right away but with a potential increase over time. In general, that was the criteria applied to the long list of potential side effects and how I made the choice.

[dans_journey]

As others have mentioned, take time to research, research, research.

I was diagnosed at age 52 with PSA 5.0 and a Gleason of 3+3. I made a quick decision to have surgery and, in retrospect, now realize I should have slowed that whole process down to learn much more about prostate cancer and its treatment options.

At the time of my diagnosis in 2010, technologies were different and PSMA PET scans were not available.

Like you, my cancer was on the left side of my prostate and I lost the nerve bundle on that side. That led to ED issues and I also had stress incontinence issues (more a nuisance than anything else).

My prostate came out cleanly—negative margins, no lymph node or seminal vesicle involvement, no extra capsular extension, nada. My post-surgery pathology was upgraded to Gleason 3+4.

My PSA was undetectable for just under 5 years, and then it became detectable again in 2015. It took 6 years for it to hit the biochemical recurrence threshold of 0.2 in July 2021.

I opted for salvage radiation therapy with concurrent androgen deprivation therapy in the summer of 2022 when my PSA hit 0.36. We had early signs that the SRT may have been working about a year ago, but my PSA is now the highest its been since treatments began: 0.52.

PSMA PET scans when my PSA was at 0.22 and 0.37 did not reveal any prostate cancer or metastases.

So, for me, it's been a near 14-year chase after these elusive little buggers inside me, and it appears that we'll continue to chase them for the foreseeable future.

Would I do the surgery again knowing what I now know today? I don't know for sure, but I do know that I would have given other treatment options a much harder look than I did.

Good luck.

(If you want the gory details of the entire experience, check the link in my profile.)

[Blue1320 in reply to dans_journey]

Thank you for taking the time to respond. Going to take a look at your story. It appears to me knowledge is key and this is helpful. Best of luck and health on your ongoing journey!

[Xavier10]

Sounds like radiation would be the best bet if there is any possibility of extraprostatic extension. Sounds like he is not sure, in which case err on the side of caution, to radiate. Not sure I see the point in surgery and then radiation also.

The scan sounds pretty good to me, but of course there still is no resolution of what is going on with the swollen nodes. Could be a number of things, but it sounds like you have ruled out the most common types of prostate cancer. I'm thinking only 5% of Prostate cancers don't show up on a PSMA scan. I saw a video talking about PSMA scans and they talked about that at the very end at 15:40. Somewhere in that video she also talks about how the inguinal node hardly ever has Prostate Cancer.

urotoday.com/video-lectures...

[Blue1320 in reply to Xavier10]

I will take a look at the video, what has me confused is there was uptake on the left side of the prostate and the RO showed me the scan and it was pretty clearly differentiated from the right side which I would assume the type I have does create PSMA or else it would not have appeared visually like that? Not sure, a question I should have asked the RO.

[Xavier10 in reply to Blue1320]

good point about the prostate cancer showing up on the scan in the prostate only, so why wouldn’t it be similar in the nodes? You’re just going to have to pin the RO down on what the swollen nodes could be. And ask him if it’s worth taking an FDG scan for or a biopsy. Maybe they’ll try some antibiotics? Definitely a mystery that I would ask you update us on.

[JWS13]

IMHO ..Radiation all the way with no looking back...20 IMRT ..No SE 's at Ucla .. Now to the nightmare ..Orgovyx for 4 months .." It will increase your "survival " "and you will recover your Testosterone in 4 months" NEVER HAPPENED ..IT'S BEEN A YEAR AND T IS 98..latest study shows no increase in survival benefit of adt for gleason's 7's ... it's a rats nest you dont want nor the side effects of adt forever with low T...ask plenty of questions on ADT!

[Blue1320 in reply to JWS13]

What is SE? do you mean you did 20 sessions of IMRT no ADT?

[Xavier10 in reply to Blue1320]

Radiation had no SE. “Side effects.” Except the ADT, he’s saying. It has lingering effects on some peoples ability to produce testosterone in the future. Some people. But, it’s still worth doing, from the increased success rate.

[JWS13 in reply to Blue1320]

Xavier is correct I am talking about the side effects of ADT... and however the last mega analysis study (sorry dont have name but youcan research) said there is absolutely NO SURVIVAL BENEFIT for those with gleason 7's (4-3 & 3-4) and more importantly 75% of the men who take adt for 4 months or more if over 60 WILL NOT RECOVER THEIR TESTOSTERONE TO NORMAL LEVELS and therefore will remain hypogonadal for the rest of their lives (with symptoms of fatique, hot flashes ,no libido ,weight gain, gynemostia, cvd, metabollic syndrome , etc.!...unless they take exogenous TRT which can cause a recurrence and another whole rat's nest of problems...ask your oncologist he 'll know this but many still by reflex order the 4 mos adt..

[Xavier10 in reply to JWS13]

"unless they take exogenous TRT which can cause a recurrence and another whole rat's nest of problems"

not completely sure this is the case. Otherwise, people who's T naturally came back would be subject to the same result. And seems like I have read that lower T actually makes it more likely that PCa is worse. Lots to read on that subject, but few double blind tests.

[NanoMRI]

Sharing my experiences, noting I did not face lymphoma. Also, I am not offering advice, only my experiences which I hope help. (Mentioning that some members in this group chastise my treatment decisions; however, nine years since my RP, six since my third treatment, my outcome is excellent and I have not yet needed ADT - which remains my goal).

At my diagnosis I was 57, G 7, PSA 10.4, with likelihood of spread. I did not want surgery but turned out that was best for me based on mpMRI findings regarding margins surrounding the tumor.

My surgery did not get it all and so I tried salvage RT to prostate bed, which missed some too.

After advanced imaging in Europe I had extended salvage pelvic lymph node surgery with frozen section pathology method, which began with the common iliac nodes. Six of thirty-one lymph nodes were confirmed cancerous, including common iliac and para-aortic.

If I had a do-over, I would again have RP, but with the frozen section pathology method. I now know here in US the Mayo Clinic is one center that offers this procedure on a regular basis. Hope the helps. All the best!

[Wishyouwerehere]

Dear Blue 1320,I wish you well on your journey.

I live on the other side of the pond but I hope these comments might help?

I would simply add that I had Retzius-sparing RALP undertaken by a surgeon who has undertaken thousands of these operations with a great track record of success.

I had 3+4 grade 2 cancer. There were two lesions. Psa level went from 5 to 10 in three months so I needed to find what I thought was the best fit for me. So surgery or radiation were my best options. Surgery was an option and the issuesof ED and incontinence were discussed and I asked lots of questions as to how they join the urethra back to the bladder.Radiation would have been 5 session . I was also plagued with obstructive flow issues be it poor flow and frequency trips to the bathroom at night. The radiologist suggested that the radiation had a chance to make these symptoms worse.

In the end I went for Retzius-sparing RALP because I did not fancy having worse obstructive issues. They used frozen section on the prostate and the pathologist luckily confirmed that the cancer had not reached the prostate capsule so all my nerves and vascular bundles were spared in the region.

6 months down the line, 2 PSA tests later show the PSA levels below detection level of the machine. I can sleep throughout the night without the need for a pee. When I pee I feel like I now pee like a stallion good strong flow. No ED whatsoever. As soon as the catheter was removed after 2 weeks i was fully continent, no incontinence pants or slips needed. However there is a hint of stress incontinence so I am careful not to lift heavy items. Also holding back on coffee helps. Keeping up the pelvic floor exercises.

As justfor suggests its the surgeon that you have to source of you go down the route of surgery. High volume, excellent record. It has to be Retzius-sparing RALP because none of the connectors to the front are cut because the prostate is removed underneath rather than going in through the top.

I am sure that radiation would have also done the job of sorting out the cancer. So like everything in life it's down to doing the due diligence work beforehand and finding out what option you feel most comfortable with given your particular circumstances.

I would say that after mulling everything over time and time again as to the best way forwards then once the decision was made I felt a weight lifting.

I think that I have been truly very fortunate in having PC detected early, the luxury of having a choice of curative options and in the end an expert surgeon to deliver the results.

I hope that you have a great result in whatever option you go for.

Best of luck