Newbie to 9 seeking advice

I am a 80% disabled 70-year-old U.S. Army Veteran 82nd Airborne. My sole care has been the VA Healthcare System since 2002 as they pay for everything and until now I have been very pleased with all my treatments and care received. I received three biopsies (66 total specimens taken) at my VAMC Urology from late 2016 to December 2019 - all came back as negative for cancer yet my PSA keep climbing 1 to 1.5 points a year. They (Urology) elected to keep me on active surveillance mode suggesting that an enlarged prostate does not always mean cancer. My VAMC Urology Clinic finally decided after another PSA spike late last year to order an MRI and then they found four suspicious abnormal growths that had gone undetected all these years......therefore they did a 4th biopsy (12) on January 16th and it came back as aggressive prostate cancer with 6 cores positive, 14.7 PS, Gleason 4+5=7, Stage 3. Needless to say I've probably had cancer since late 2016 gone totally undetected all this time for the lack of not ordering an MRI sooner. The news floored me! I was totally shocked to get that kind of information! I got upset and got severely proactive with my VAMC and took my concerns straight to the Executive Office citing the Urology Clinic for not having done an MRI a lot sooner and now leaving me in High Risk state of concern. Urology then ordered a bone scan on Feb. 6th, and said it look contained for what they could tell, which is a good thing at least. I have yet to be seen for an appointment with the Head of a Radiation Oncologist (RO) It has been scheduled for March 9th, but he has already agreed based on my charts to allow the Urologist MD to give me a 6-month shot of HT (Eligard) to slow the tumor and keep it contained so it hopefully stays a Stage 3. I was told VA protocol was to let the HT work for at least 2 months to shrink the prostate tumors. I will make my decision on a treatment plan come March 9th......I am now leaning towards brachytherapy followed by EBRT and probably additional ADT, - if strongly advised. I am hoping the brachy is done through Community Care since my VAMC does not offer that procedure - only RP and EBRT. My confidence level has been shaken so I do not want VAMC doing anymore to me internally than HT shots or beam therapy sessions, which they do offer so it is what it is. I have only a short time left before March 9th, so I'd really appreciate hearing from any G9 who went the brachytherapy route over radical prostatectomy. I have already read in my medical report that RO may be agreeable to go along with Brachy with ERBT and ADT. I'd like to hear your side of it patient experience and all that happens both during and afterwards. I have been on Eligard since Feb. 14th, and have had no side effects as yet. Your own experiences greatly appreciated.......especially how long now in remission since treatment. I just discovered this forum a few days ago. Hope to hear from some of you soon. Much appreciated.

Ken - I don’t know where to start with this and it is painful to hear your story. The VA seems to cover the extremes from great to terrible care depending on where you go and what afflicts you. Some questions if you don’t mind:

What is your PSA history over the last 5 years?
Have they run an abdominal CT scan after the bone scan?
Can you get a second opinion on the biopsy pathology at John’s Hopkins for example to confirm the G9 diagnosis?
When you say EBRT, do they offer IMRT/IGRT treatments on current equipment?
Is there a way you can get to MD Anderson or UT Southwest for further evaluation?

You have concerns about the care you are getting so it is hard to trust any information that they have obtained and everything is questionable. Once your trust is gone, it is really hard to get that back.

G9 is high risk so it requires maximum treatment. I had surgery followed by radiation. You are a better candidate for HT plus HD Brachytherapy and IMRT/IGRT (ie: the Triple Play). HDBR is high dose temporary radioactive seeding of the prostate followed by RT to treat the remainder of the area. A number of folks here have had that treatment protocol with good results. They have also gone to specialists for their treatment which is an important distinction.

Hang in there, there are a number of Vets here with high risk PCa that should be able to help advise regarding your situation.

First, thank you for your service to our country. Second, welcome to our little club nobody wants to join. Third, from one G9, PSA at start was 12.4, to another high risk aggressive cancer guy, the triple play, ADT, and in my case, LDR brachy and SBRT have proven a very effective treatment plan. I was on ADT for 18 months. It was a bothersome trip, but not a nightmare. Plenty of side effects to it in my case. Some guys get through with limited SE’s. I had run the gamut. Hot flashes, Joint pain, insomnia, weight gain, mood changes, muscle loss, fatigue and probably a few more. Now 18 months since I’ve been off lupron, I only occasionally get some mild hot flashes. Weight gain is another story. Put in over 40 lbs. and along with bad knees, haven’t been able to lose it.
Brachy was not too bad. The work ups to the actual event were worse. The MRI, the simulation and the preps for all were disagreeable at most. The actual procedure lasted about 3 hours I believe. They inserted gold fiducial markers to be able to correctly locate the prostate for the SBRT radiation 2 months later. They used 43 Pd-103 seeds, and also did a spaceoar gel spacer. I was really dehydrated after the procedure. Try to drink as much as you can before leaving the hospital. I was “collapsible” falling down for about 3 hours after surgery. Plenty of blood in the urine so don't be shocked. I slept for about 5 hours when I got home. Only had mild pain in the perineum area from the needles. Blood in the urine only lasted till the next morning.
SBRT was done one month later. 5 sessions and done in one week. Only some mild sunburn effect from the radiation. Bowel prep and keeping the bladder full to the radiologists requirement were the hardest part. Treatment lasted about 15 minutes. Shame I had an hour and a half drive each way....lol. Have suffered no real side effects from the radiation and none from the brachy.
As you can see in my signature, so far so good. I think the radiologist is only secondary now and my main contact will be with my medical oncologist.
If you would like and other info just let me know. I can be contacted by email via my profile.
Best of luck
Dennis

Hi Ken. My diagnosis was fairly similar to yours, though I was only 55 at the time and mine was primary Type 5, a 5+4 G9, also with 6 positive cores (all G9). I had EBRT and 3 years of ADT. These G9 cases are serious, and merit special attention. They've even developed a newer grading system, separating the G9/10 cases (Grade Group 5) from G8 (Grade Group 4), since they are a different beast. The Type 5 cells are easily metastatic, giving rise to the extra risk involved.

I don't think it's really possible to "over treat" a G9 case, particularly when found as a Stage 3. I had my lymph nodes irradiated too, though there is debate over how much that helps. It increases risk of intestinal issues, though I have blessedly had very little trouble there.

Brachy boost is well accepted now. There seems to be an acknowledged improvement in cancer control, at some increased risk of urinary stricture. It's a tradeoff, as are so many things in medicine. Discuss it with your radiation oncologist. It also seems to allow a shorter sentence on ADT, which is perhaps the least pleasant part of the treatment plan.

For radiation therapy, a full bladder and empty rectum are really important to minimize injury to neighboring tissues. I was absolutely rigorous about that, and I believe that is one reason I've had very few side effects from the radiation, even now 7 years later. Considering how upsetting my diagnosis was back then, I'm quite happy to be doing well today.

There is hope, much hope. Prostate cancer treatments have been advancing over the years, with new drugs, new ways of sequencing what we already have. You'll have down days for sure, but there are many of us here to say there is hope. All the best.

[Edit to add: For what it's worth, I am not in favor of surgery for a situation like yours. A stage 3 G9 is unlikely to be cured by surgery, and will require radiation as follow up probably not too long afterward. This gives side effects of both surgery and radiation. Given a similar choice, I selected radiation + ADT, and am very happy with the outcome.]

Mumbo......I am leaning in the direction of the Triple Play (.HT plus HD Brachytherapy and IMRT/IGRT) .......as for your questions: (answers within)
What is your PSA history over the last 5 years? (I will look that up and post this week)
Have they run an abdominal CT scan after the bone scan? (They have not)
Can you get a second opinion on the biopsy pathology at John’s Hopkins for example to confirm the G9 diagnosis? (I plan to see if I can get second opinion at UT Southwestern, also in Dallas.
When you say EBRT, do they offer IMRT/IGRT treatments on current equipment? (I am only aware that VAMC has EBERT available but I will ask about IMRT on March 9th and see if that is also available at VAMC or if not at UT Southwestern).
Is there a way you can get to MD Anderson or UT Southwest for further evaluation? (I am going to pursue that on March 9th with the Head of my VAMC Radiation Oncology. UTSW is in Dallas).

I have been pretty happy with my overall VA medical care up until now and I have been enrolled since 2001. But the Urology Clinic has blown my faith because they failed to find any cancer over a 3-year period despite rising enlarged prostate numbers and going through 3 biopsies (66 sticks) and finding absolutely nothing.. I suspect I have had cancer at least 3 years now and they apparently did not see the need for an MRI until after my 3rd biopsy. The MRI found it just like that and a 4th Biopsy in January confirmed......had they done an MRI two years ago I'd probably been Stage 1, Low Risk versus where I am today.

Dogdays......I appreciate the blow by blow accounting because I want to know it. The fear of the unknown is worse on me than the knowing of what really lies ahead so that is why I'm here to read others stories and how others decided, experienced, and where they're at today. My main concern (worry) at G9 and a PSA of 14 is that I'm depending on the HT (Eligard) shot (given Feb. 14th) to stop the spreading and to hopefully still contain in capsule until I can get brachy into the mix followed by beam or whatever. VA Urologist MD said it is VA protocol to be on HT 2 months - if not 3 - before doing anything else. I am aware as a G9 I will probably need the Triple Play. It makes sense. It is really good to hear from others who have been down the rabbit hole before me. Knowing matters. Support matters! I hope others will chip in between now and March 9th.

Wayne, my first shot, firmagon, was done in March of 2017. My next shot, lupron, was done in April 2017. My radiation doc at MSK said he would not do brachy until my PSA was at least 1. My last shot before brachy was in July 2017 and my PSA was 1.05. So I was on ADT for 4 months before any other treatment. The ADT will knock the PSA down significantly and stop or slow the growth. Your doc is right on schedule. He probably is looking for the same return on the ADT as my doc was. One or below to start treatment.

Yeah, it took more than 2 weeks to really kick in. I’m thinking more like 2 months. I hate to recall those fun days.....lol. Best thing to do is keep active. You said you were 80% disabled, but if you can, keep moving. I also have several other medical issues, back, knee and heart which didn’t help in my taking the advice I just gave you. So I’m still carrying extra weight. Knee replacements may be in my near future.
With spring and eventually summer on the way, keep a fan in the room. It helps with the sweats. Also, I neglected to mention lupron fog. That’s where you start having trouble remembering things, although I did not suffer from it. Just another fun note on potential side effects.

Wayne - Sounds like you got the "system" figure out, just keep pushing until you get what you want and need. Do-over's are not practical with this stuff.

The abdominal CT scan is standard at some point to screen for localized issues with nearby organs, lymph nodes, etc. Tends to be done around the same time the bone scan is done so asking about it would be prudent if not mentioned.

The advantage to a 2nd opinion at Johns Hopkins is that Dr. Epstein wrote the book on prostate pathology and his group is considered one of the best if not the best in world. It is less than $300 and you have the VA follow the protocol to send pathology slides to them. LINK http://pathology.jhu.edu/department/services/secondopinion.cfm

They should have IMRT/IGRT (CT image guided) equipment but you have to ask all the right questions now. Same with asking about SBRT treatments and capability that others refer to.

No direct experience but HDBR makes sense to me compared to LDBR. My Dad had the regular LD permanent seeds and had some stricture issues years later. It would seem that temporary HD seeds makes more sense in the long term but just a guess on my part.

Wayne - I missed something early on, your original description says “Gleason 4+5=7, Stage 3”. This must be wrong as it would be Gleason 4+3=7, Grade 3 or Gleason 4+5=9, Grade 5. Can you clarify?

How’s your journey coming along?

Thanks, I had assumed it was G9 based on your discussion, it must have been a typo in your original post.

At some point, a dropping PSA should give you an indication the ADT is working although PSA can be variable at first with ADT.

I hope that UTSW does a complete evaluation on you such as reviewing all your records, MRI, pathology, etc. Most institutions like that will try to get everything before you meet with them before proposing treatment schemes. Based on your story, everything probably needs to be double checked.