Hi all, my father has been diagnosed with Pca Gleason score 9 stage 3. Psma pet test shown it has spread to seminal vesicle.
We are now making decision on which treatments to go for that give best result for survival rate.
Anyone with same condition would able to share your personal experience /stories on the treatment that you have undergone? Much appreciated.
Hello Jessica,
I'm not really knowledgeable enough to advise you on which treatment to get but I will suggest that the knowledge, skill, and commitment of the doctor are very, very important. If you are getting opinions from two doctors (and it is advisable to do that), consider the doctor as well as the treatment he or she is offering. Is he a patient person? Does he listen carefully to your questions and answer them carefully? Does he try to explain what he is proposing to do and explain the risks as well as the benefits? Does he try to brush off questions and shoo you out of the office? You may not have the knowledge to determine how capable a doctor he is, but we all have some experience evaluating people for their honesty and concern, and that should be a factor.
Best of luck.
Alan
Thanks Alan for your reply.
We have seen surgeon and oncologist.
Surgeon would say Surgery + radiotherapy is a multimodality treatment and oncologist would say surgery is not necessary and radiotherapy + ADT would suffice.
So there’s no answer as to the best treatment for our case from the doctors we have seen.
I'm Gleason 9 (Stage 3) and my urologist, who is always quite anxious to practice his craft and perform surgery, advised pretty much everything else other than RP. The basis for his recommendation was based on side effects of the treatment, i.e. incontinence. Something to consider.
In my case it wasn't a big problem.
Hello Jessica,
It looks like radiation + ADT is going to be the essential treatment with surgery advocated by some specialists and not by others. So the first thing I'd want to do is find the very, very best radiation oncologist available to you. You can post a message saying where you live and asking for recommendations here on this forum, also ask the oncologist you're seeing, and maybe look at the NCI Designated Cancer Centers at cancer.gov/research/nci-rol...
There are two possible advantages of not getting surgery. One is that the side effects of surgery don't happen. The other is that your father can start ADT immediately, without waiting to get onto the surgeon's or RO's schedule.
ADT starts with a prescription for some pills, followed shortly after by an injection. It can be started the same day that it is prescribed. Hopefully, it will stop the growth of the cancer immediately and weaken it before the radiation starts. However, ADT is said to make a surgeon's job more difficult and the surgeon may not want your father to get it at this time.
What a crapshoot all of this is!
Best of luck.
Alan
Read my profile by clicking on my picture and you’ll see what I’ve done . I was stage pt3b gl9 after RP.
Bob
Thanks Bob.
Was RP+radiotherapy the treatment advice given by your doctors in your case?
In my case, the surgeon and oncologist I have seen gave different opinions (surgeon suggests for robotic surgery and radiotherapy if recurrence happens while Oncologist suggests for IMRT + ADT) and we have to decide on our owns. It’s a tough decision and we do not know what is the best treatment.
Jessica
Like you the urologists suggested RP and ROs said IMRT. I chose RP wanting to get it over with quickly but due to bad pathology after RP ( pt3b while pre RP was t1c), Psa was .1 after RP (open) and it climbed to .3 by nine months post op so SRT became necessary. Every time I went on ADT vacation I quickly had recurrence necessitating return to ADT and spot radiation . I hated ADT and went to estradiol last Feb so vacations aren’t necessary due to no side effects except gynecomastia ( man boobs) and PSA is undetectable. I’m doing really well. Lost 38 lbs in last two months mostly through counting calories and eating good organic foods plus daily exercise. Obesity is a major cause of PCa and ADT really contributes to weight gain.
Good luck!
Bob
My husband was 48 and diagnosed in 2006 with a psa of 70. A major cancer center in Manhattan turned him down for RRP because they said his psa was too high and he was too young. Felt like a death sentence. He ended up at another major Cancer center in NYC and they did the surgery. Also in his seminal vesicles , the bladder neck and the urethra. Extensive surgery and 6 months later psa started rising again. They did salvage radiation immediately. He stayed at .01 for about 5 years. Then psa started to slowly rise. But he had had no further treatment. Continued to work, etc. in 2014 a freak syncope episode and scan found it had mets to his clavicle. they radiated rather than start meds. He did well for another two years. But now in spine, ribs, pelvis. He started firmagon and Zytiga in summer of 2018. Zytiga side effects pretty bad and after a year he made decision to go off. He's now on firmagon only. Not sure what the future holds. But he has gotten almost 14 years when after talking to the first cancer center who turned him away, it looked very grim. I understand that that same Cancer center is now following the same protocol that my husband got 14 years ago at the other facility and I read somewhere that they realize now, that even though it may have spread beyond the margins, surgery and radiation may extend life. It certainly did in my husband's case. This is not to say you should follow this plan....its so individual, but I think my husband is happy wit his decision. I wish you and your family well.
Thanks Boc13 for the sharing.
It’s definitely an aspiring and motivating stories for many of us.
In your case, your husband has done the surgery and radiation. May I know what was his Gleason score and staging at that time when he was diagnosed?
Yes it was 9/10
Thank you for your post....Would you be kind enough to tell us which major cancer center in Manhattan, NYC turned your husband down and which major NYC cancer center did the surgery?
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 10/29/2019 7:33 PM DST
Sloan turned him down and NYU did the surgery. Dr Herbert Lepor did his surgery. He was wonderful as was Nyu at the time. He was part of Dr Walsh’s team at a john Hopkins that developed the nerve sparing surgery. He’s currently being treated at Mt Sinai
Thank you for your response... very important!!! I am a patient at Sloan and tout that hospital to everyone I know... What a disappointment that must have been for both of you. Well I'm glad Dr. Lepor of NYU came through for you husband.
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 10/29/2019 8:00 PM DST
Yes extremely disappointing. But it was the surgeon. Oncology Dept may have a different take. I’m sure surgeon felt my husbands outcome would mess with his stats. Sad to say, but I believe that was the case. Dr Lepor did not gloss over the situation, but he gave us hope and as it turns out, 13 years later, a lot more. And that’s all any cancer patient wants to hear...that there’s hope. Unless there truly is not. Good luck in your battle.
This article has information which may help when talking with your doctors (you need to consult with your urologist, a medical oncologist and a radiation oncologist before making any decision ):
ncbi.nlm.nih.gov/pubmed/295...
It seems ADT plus radiotherapy and brachytherapy boost may be the most beneficial treatment.
A good thing is the PSMA PET/CT did not show any local or distant metastases. It is possible that it could be metastases since the PSMA PET/CT does not detect metastases smaller than 4 mm. This could be a factor to discuss about whole pelvis radiation or extensive lymph node dissection if a prostatectomy is considered.
Thanks tango65 for the sharing.
The oncologist I have seen did not suggest Brachytherapy but only the normal IMRT +ADT.
I was informed that brachytherapy is sort of like “old school treatment” and that IMRT has been the favourable treatment nowadays.
brachytherapy is sort of like “old school treatment”....
This is not correct, please talk to a qualified medical oncologist about BT and read TA's links about it.
I agree with timotur, brachytherapy is not old school treatment. The problem is that many doctors has not been train to do it. You should talk with radiation oncologists at centers of excellence before making a final decision..
Keep us informed. Best of luck.
of course this was 13 years ago, but we were told surgery first. If his psa went up (which they did) they had a short window to do salvage radiation. However, if you have radiation first salvage surgery is much more difficult if a surgeon will even do it. Protocols changes after 13 years and I understand that, but you may question dr about this. The drugs can be tough. My husband went roughly 10 years without further treatment. And once he did go on he is one that experiences terrible side effects. Just food for thought.
Jessica: I was stage pT3b GL-7 +SV +LN and chose HDR-Brachytherapy + IMRT + ADT (see profile). Very successful outcome so far, PSA fell from about 30 to 0.03, virtually no SE's. It's important to start ADT two months prior to radiation if you choose this route.
Thanks Timotur for your sharing.
Can you furnish us with more information regarding your father? His age? Location? Treatment center(s)? PSA score? Doctor's name(s)? All info is voluntary but it helps us help you and helps us too. If you're looking for any doctor in a particular location, then post here and someone may be able to help you. Thank you...
p.s. you may also want to post your father's information on your home page, under his name.
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 10/28/2019 5:02 PM DST
Patient:
73 yrs old
Stage 3b PSA 10
After biopsy PSA 17
PSMA test shown cancer cell has spread to seminal vesicles
Lucrin injected on 10/9/19
PSA drops from 17 to 3.69 after 1 month lucrin injected
We are based in Malaysia. Currently my dad has not received primary treatment yet.
We do not know which treatment would be the best option for my dad’s case.
Surgeon suggests for multimodality treatment which is to go for robotic surgery first, once there’s recurrence then opt for radiation etc. While oncologist suggests surgery is not necessary as the cancer might have spread, so the advice is to go go radiation IMRT+ ADT.
Thank you for your detailed reply....Hopefully your decision regarding the surgeon's recommendation vs the oncologists suggestion will be reinforced by our member's comments... They know their "stuff"....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 10/29/2019 1:08 PM DST
Please read this:
pcnrv.blogspot.com/2018/03/...
Hi Allen, would you explain further on the studies and your opinion for high risk patient with gleason score 9, T3b invasive seminal vesicle. Much appreciated.
What it says is that at many of the top institutions men with GS9 did better with brachy boost therapy (which means external beam radiation + brachytherapy to the prostate + hormone therapy) than with just external beam radiation+hormone therapy or surgery, even if surgery was followed by radiation.
Did that answer your question?
Yes. Definitely.
However, the oncologist we seen suggests my dad to go for the normal IMRT for about 2 months. It seems like brachytherapy has not been regularly apply in my country nowadays.
I did ask about whether EBRT+BT would be a better treatment, and the answer is no.
What country?
Well, if the SVI (seminal vesicle invasion) is unilateral, your dad's condition matches mine.
I chose robotic prostatectomy being diagnosed with Gleason 8 and T2c (mpMRI first and then 20 core biopsy). I am too fresh about it, so I can not give you a personal account of how it may fare.
Yet, I get prepared for the next steps, as I have no doubt that there will be next steps.
The unknown Xs are the when and the durations of the further sequencing intervals.
Statistically, surgery can buy your dad some extra time. The stress here falls on the word "statistically" because sheer luck plays an important role.
Surgery is not a walk in the park and again luck lurks here. I had my surgery in the most specialized klinik in Germany and yet had the cathetere removed after one month, as even the most experienced high volume surgeons can have a small percentage of anastomosis failure.
All in all, if I will get 2 years before biochemical recurrence, I will say that it was worth it.
This is a cost-reward decission and only your dad can take it.
Only make sure that he has got realistic data to base it upon.
Thanks Justfor for sharing!
Hi Justfor, just a question. The surgeon told us that it’s better to wait for 3 months after lucrin injection before surgery.
May I know if you injected ADT before surgery?
And how long you have waited since diagnosis till the surgery.
Hi Jessica, To answer your questions I didn't take any ADT prior to surgery. I had consulted with 5 urologists before deciding and did ask this specific question to two of them. I remind you that during this time I wasn't aware regarding SVI. mpMRI was indicating a high volume tumour but at a high probability of it being contained.
So, my question was:
- Would some ADT prior to surgery shrink the prostate and make the robotic procedure easier to implement?
- The first one answered:
"I don't have any problem with any prostate size"
The second:
"We don't follow this path as it muddles things"
The one and sole truth here is that you are in a harsh market environment. Almost every medical discipline would like to sell their "merchandise".
From the five urologists mentioned only one gave me un-biased advise that was of help to me. The other 4 were more of the automobile "salesmen" type, but bearing an elevated posture.
Surgery was performed by a 6th that readily understood that I was informed and didn't try to "sell" me anything. By that time I had been converted to an informed "buyer".
It took me 5 months to work all this out, 8-10 hours each day, examining all options.
To get an idea, I even communicated with a hospital in India for pencil beam proton irradiation. This was plan C in my short list.
I was fortunate during my early google search to bump onto this Norwegian study which claimed that:
"Increasing RP-interval up to 180 days was not associated with adverse oncological outcomes at eight years follow-up. These findings should be considered when planning for prostatectomy."
link.springer.com/article/1...
Bottom line:
I am more than confident that the time I sent to get informed and thus become capable in discriminating marketing hype from proven evidence, was more than worthy.
Some quantitative data that may help your dad's estimate regarding RP worthiness (things that you will probably never learn from your doctor because he probably doesn't know them either).
In my case (SVI, but R0 => no ECE or positive SM, no nodes) they gave me a 20% probability on 5 years recurrence free survival. The klinik performs +2000 procedures per year and thus have a large pool of data to dig into.
This is the most conservative figure that I have found among 3-4 other nomograms.
On the flip side, the mskcc is more optimistic giving a 38% with no ADT, while not accepting the combo ADT with RP ("it muddles things", remember)
mskcc.org/nomograms/prostat...
All other nomograms fall into the in-between space (20-38%)
Are the people in mskcc more successful into this?
Maybe yes, maybe not.
This is because we are comparing apples to oranges.
The 20% is an overall probability, while the 38% is a conditional probability at t=0.
That means it has the time parameter in-built adding 1% for every month successfully traveled. It is highly possible that the database backing it precludes the category of persistent PSA (outright RP failure) which in our high risk category is not to be ignored.
Some authorities believe spread to the seminal vesicles increases the risk for metastasis as the seminal vesicles are very vascular. Find out what the studies say ..... it is what is now known .... Alan has some good advice.
Thank you Rscic!
I was stage T3c nomo. PSA 28, Gleeson 7 (4+3 ), no mets, seminal vesicle invasion, out of prostate capsule. Oncologist refused surgery, that was my choice, because it was out of the prostate capsule with a high chance of micrometastasis. She didnt give me a choice and said it would be RT + ADT for 3yrs. I asked for proton beam but again she refused. Im in the UK NHS system, little choice. So 37 RT and turned out to be 30 months ADT. ADT will cause significant loss of muscle mass, penis size/length, sex drive/libido, frequent hot flashes and others. Also increased risk of heart attack and stroke. Not a nice treatment but no choice. If you go with RT + ADT make sure he gets frequent dosage of viagra or similar to keep the blood flowing. Less likely to lose length that way. What ever you choose do it asap. Time is of the essence. Good luck
Hi Big_Mcc, thanks for sharing!
My diagnosis 9 years ago was the same as your father (see my profile). Experience/knowledge of your medical advisors is very important, given the capability of your medical facility. If you have surgery, it is likely that it will be a radical prostatectomy (not robotic) because seminal vesicles are involved. IMRT, the other option by the sound of it, would normally follow a period of ADT (eg. 6mo, but that may vary) which your father is currently undertaking.
It is possible he may have a recurrence following this primary treatment but there are other treatments that will be available at that time, and you could touch base with this Group then. Be encouraged and hang in there; your Dad probably deserves it. =Rob.
Hello Jessica
I was cT2a following MRI and PSMA scans, but after RRP surgery it turned out to be PT3b, so i’ve spent a lot of time looking into what that outcome means.
There’s no doubt that once the cancer gets out of the gland and into the SV, there’s a higher chance of BCR and ultimate metastases - but it is by no means a foregone conclusion.
In my case, the prostate was removed with negative margins (ie the prostate, including a small extra-prostatic extension and both seminal vesicles and a layer of benign surrounding fatty tissue were removed - by the way, there’s no issue removing SV using RRP). I had an undetectable PSA for five months, when it came back at 0.024, and progressed with a PSADT or around 4 months. I waited for seven months to see if it would slow down and it didn’t, so I had another PSMA scan at PSA =0.1 (finding nothing) and then commenced eSRT to the prostate bed and lymph nodes, plus 12 months of ADT - I am at month 9.
I try to stay on top of all of the latest developments - if I had my time over, I would probably do much the same as I have done, particularly as I didn’t know I had T3b until after the surgery. RRP isn’t too bad and most studies indicate that getting the prostate out extends life, even it ultimately turns out that there has been micro metastatic growth already. Brachytherapy plus radiotherapy wasn’t an option for me because I had a very large prostate - if that hadn’t been the case, I would have closely considered it.
You don’t have to rush - it doesn’t sound like you’re getting great advice. If you’re in KL, presumably better advice is available - if not, and you have the resources, i’d Consider a trip to Melbourne for a second opinion - getting the treatment here is also a possibility, though not cheap.
Stuart
Been on Zytiga, Eligard,Xgeva for 21 months now PSA 0.1 since the beginning of ADT treatments also had Provenge infusions back in June. I have extensive Mets and lymph nodes that have been substantially subsided on this Avenue of treatment
Never give up never surrender. Leo
Hi Jessica...I was 4+3 and T3b (SV and a margin) and PSA 20...had RP and then 3 months later ADT + 18 months Zytiga (concurrently with the ADT which was Firmagon) and then 1 month later IMRT...the RP was in spring 2014...post RP PSA was 0.02...been <0.01 since starting ADT in about August 2014...the docs hoped the combined treatments might bring about a cure...time will tell...Don
Lupron seems to be working nicely, I wouldn't change anything right now considering your father age. Your father could get a few year out of Lupron. There are always other ADT drugs to move on to if and when Lupron fails. He could get many year out of these drugs alone.
My husband was diagnosed May this year with Gleeson 10 stage 4, and I would have loved the opportunity to get the source of the cancer out, but reading about it now, his prostate was so overtaken by cancer that I suspect he would have lost a lot more than his prostate if we had elected for surgery, but you description doesn’t sound as advanced... my unprofessional advice would be to learn all the possible consequences, not just the ones you are told in the first briefing. My husband would be incredibly miserable if he had nerves damaged during surgery. My husband is on hormone therapy (Eligard injections and zytiga). We are leaving radiation therapy and chemo as a last resort. But he has mets in the bones, so his prognosis is pretty awful regardless. I just want him to be comfortable and am hoping he can stick around till the medical world come up with something that works to get rid of his cancer. Plant-based diet is supposed to be good (lots of tomatoes, red cabbage...). Green tea is meant to be good too, but surprisingly, it has been harder to introduce than the plants on his plate! My husband was a big meat-eater... prepare yourself for a rocky road, but remember that we are all in the queue, he just has a better idea of where he is in that queue. So treat this diagnosis as a heads up to share warm experiences with him rather than dwell on being miserable.
Hi Jessica. In May 2018, I was diagnosed with prostate cancer, Stage T3b. The cancer had spread to my seminal vesicles, bladder neck, and pelvic lymph nodes. RP, radiation, and ADT was my treatment path and my PSA has been undetectable the last two 6 month checkups. I am 53, and though I deal with side effects from the Lupron, I am much better on this side of things! Best!
I’d strongly encourage you to get an integrative oncologist on the case straight away to work with the conventional oncologist. I’m sold on the idea of taking a multi-pronged and less toxic approach of targeting the cancer stem cells using a metabolic cocktail of supplements and repurposed meds. See Jane McClelland’s book, “How to Starve Cancer without Starving Yourself”.
Hi, I am in the exact situation. It is just a case of making up my mind as to what is best I believe Radiation treatment is a followup but I want it targeted
Hi. RRP plus Radiation and hormone treatment all together.
Hi Jessica, please read my husband’s bio and treatment. In short, PSA at dx of 47 in April ‘22. Gleason 9, bone scan and ct scan neg for mets. Started Casodex/Lupron three months only before RP at Yale with respected surgeon. The surgeon wanted to arrest the growth prior to surgery. Post surgery pathology was Stage 3b with bilateral microscopic SV + and PNI, N0. PSA remained undetectable for 1 year post surgery. At 0.2 in November,, ‘23, a PSMA pet scan found 4 tiny (mm) moderately PSMA avid abdominal nodes. We immediately were referred to an amazing Oncologist who restarted Casodex/Lupron. followed by Zytiga (1000 mg) and 7.5 prednisolone. We then saw a Radiation Oncologost who did 8 weeks of IMRT from March-April targeting the abdominal nodes first then concentrating on the whole extended pelvic field. We sought a second opinion from Sloan Kettering, and they concurred with this treatment plan. To date since December ‘23, psa is undetectable. Our plan is to stay the course. It is extremely difficult to remove the prostate after pelvic radiation, so I am glad we did the surgery first to take down the burden . He also had a very large prostate which would have been problematic later on. He recovered easily from the surgery and is doing well post radiation. I am always scared of drug resistance setting in (he will be on the ADT for three years), but know there are many hopeful options for the future. Take care! Reach out if I can be of any help.
Stephanie
Lupron and arrhythmias
Oligometastatic PCa
Neuroendocrine Differentiation 
sclerotic rib lesion 
PSA .04 up from undetectable six weeks ago
