Newby with GS 10 but PSA 3.16

Just joined the forum, glad to find it. Below is copied from earlier posting on the GS 9 and 10 thread.

Age 73
Live in Southern Maryland
DRE found suspicious firmness 4/2019
PSA
4/2019 3.16 ng/ml
8/2019 0.05 (after 4 months of ADT)
Biopsy: 4/29/2019 % of core cancerous: 1, 20, 100, 50, 70, 100, 60 ( 5 cores clear)
perineural penetration identified on 2 cores
extraprostatic extension identified on 2 cores
Gleason values:
4/29/2019: 8, 8, 9, 9, 10, 10, 9,remaining 5 cores benign
ADT (bicalutamide 50mg) beginning 5/1/2019
CT
7/29/2019: no evidence of mets
Bone Scan
7/29/2019: no evidence of mets
MRI of prostate:
scheduled for 8/15/2019
Pursuing second opinion at Hopkins
Weighing surgery vs radiation, presently inclined toward radiation as lymph nodes may be affected

Urologist recommending radiation, my research so far concurs. Appears EBRT + BT + ADT offer best prognosis. Appointment with local radiation therapist (Dr. Boris Naydich) when he returns in two weeks. Appointment at Hopkins 8/16. Generating questions for Hopkins appointment.

Any insights would be appreciated. Thanks

marv,

Welcome to our club that none of us really wanted to join. G10, that's uncommon. The good news is that there are a few G10s in this forum, and they are all still kicking after several years. All is not lost. It sounds like you're doing all the right things.

There are some opinions that organ contained high-risk PCa can be successfully treated with surgery--but mostly the recommendation is what you are describing--the so called triple-play (or the throw the kitchen sink at it treatment).

The good news is that you're here, you're getting started on treatment, and you'll get past it. All we can suggest now is to eat healthy, exercise as much as you can, and try to focus on living life. It sounds like you've got grandkids...they will help. Hang in there, the answers will come.

Amazed and grateful at the quick and helpful responses. Will continue to post my experiences as we work through this. Would be interested to hear what others have done to help their spouse/significant other deal with the diagnosis and as they moved forward. Also would appreciate insights on impact of treatment on your quality of life and ability to do stuff around the house and yard (e.g., we have large lawn, trees that need trimming, etc).

Thanks again.

Hey marv

Another radiation guy here. My urologist recommended the “triple play”. 2nd opinion urologist recommend surgery.

I didn’t want to be operated on. Feared side effects and also wanted to avoid surgical risk and recuperation. I also felt that my age(66 at the time) increased my risk. If I was younger, I might have opted for surgery.

At 73 and high risk, you’re a solid candidate for triple play.

Good luck

Al

Thanks so much for the information, links, and encouragement from all who have responded. As suggested I have pursued information for low PSA with Gleason 8 to 10. I had not found the study in the link from spouse21 but had found an earlier study covering the period 1983 to 2003 which had the same findings, that with PSA<2.5 the prognosis is not good. For PSA 2.6 to 4.1 the prognosis is better than higher or lower. For those interested here is a link to the report https://onlinelibrary.wiley.com/doi/full/10.1111/j.1464-410X.2011.10628.x

Thanks again.

Marv,

What most of us have found is that we do two things for all major appointments: Take our spouse with us, and get a pocket folder to put all the paper in--including a notebook and pen for questions and answers. Having a second person there to listen and take notes helps a lot.

Yes, your G10 and low PSA is about as bad as it gets. We won't pull punches with you on that. However, there are several guys in here who started in your same boat, and are doing well post treatment. With the combo of UMaryland and JH in your back pocket, you're in some top end treatment territory. If you really wanted to get in on the latest and greatest, you could always go down to MSKCC in New York for a consult.

Marv, yes very high risk and not common. Thankfully it was found before mets have appeared. However the scans do not detect micro-mets, so be aware. Standard of care will be ADT, which you have begun, and then de-bulking the main tumor source, the prostate. The combination of external beam and interstitial radiation is most effective and avoids the additional risk and side effects of surgery.

Then the question is do you initially do more due to the dx? Do you add drugs like Xtandi or Zytiga? Is chemo indicated, or when might it be? These are questions for your doctors that hopefully are well experienced at treating very high risk disease. Where might Provenge be positioned? Do ask your doctors how many G9 and 10 men they have treated. How were they treated and how are they doing. Make sure you are in experienced and capable hands. I suggest that your slides be subjected to the various genetic tests that might display BRCA, HRR, PD-L1, etc. I would want to know everything possible and get out ahead of the disease.

One observation I have is that many doctors and institutions are more responsive to high risk and advanced disease than they are proactive. Others are much more proactive and aggressive treating the disease. Doctors like Oliver Sartor at Tulane and Eugene Kwan at Mayo Clinic and some at MD Anderson appear to be more aggressive treating high risk and advanced stage disease. You may want to have a consult with one of them and even collaborate with them and your local doctors. This is a time for "all hands on deck" in my opinion. One of our long term members often says "the low risk men are over-treated and the high risk men are under-treated" and I think there is truth in that observation. Of course the balance is finding the treatments that will be effective given your specific situation. You will either find that additional assessments open more treatment options or confirm that the track you are on is most appropriate. Either finding is most valuable and will help you and family getting through this.

Hopefully, the initial treatment will suppress or even eliminate the cancer. However, with G10 the reality may be that it is already in areas the initial treatment wont affect and are not yet detectable. Now is the time for excellent research and learning, but not fear or panic. You know what you have and many men have managed high risk disease very effectively, hopefully you will as well. In my opinion, part of that research includes finding and consulting with doctors that are really on the front-line if managing very high risk and advanced stage PCa.

Regarding side effects, the most significant will be from the ADT suppression of Testosterone. It will push you into a menopause-like situation. Your body thermostat will go haywire and you will have hot flashes and at times get cold as well. You will lose body hair, likely gain weight, be affected sexually, lose energy and may have some brain fog. These are common and affect men in different ways. I was on ADT for a little over three years. A number of things worked for me. I eliminated caffeine, carbonated and acidic beverages. I drank a lot of water and green tea, but kept my evening glass of red. I reduced meat and fried foods and increased fruits and vegetables. I exercised more and walked a lot. Hot flashes were limited to sedentary times, so stay moving. Most of all I stayed positive and kept my sense of humor.

As for my wife, when I was diagnosed she had just returned home from a double mastectomy for her second bout of breast cancer. I was her caregiver. She then had many rounds of chemotherapy and a few months of radiotherapy, and several more surgeries. I was too busy helping her and, after all, I had no scars or drainage tubes and was not undergoing chemo and all its side effects. Consequently and by comparison, my treatments were really non-events.

Keep your perspective, stay positive and most of all make every minute of every day count. Do good and have fun. Live and enjoy life. With this you have been dealt a bad hand, but remember, it could be far worse and many people are being dealt far worse.

Thanks Marv, I'm sorry for her suffering and your loss. Thankfully my wife has recovered well and approaching nine years from the last bout and 23 years from the first.

You are on a good track regarding your situation. tay focused.

Jack

Greetings.

I'll have more information for you at the end of the next week. This week, my husband is getting a CT scan and other tests to see how things are looking inside. (He can't have an MRI due to his pacemaker.) He never had a huge number of mets and no definitive ones at diagnosis though there were questionable areas at that time.) Around 4-5 mets appeared about a year and a half after Lupron ended. It'll be interesting to see what's happened with those.

His current numbers are a bit complicated. He's responded well to Zytiga, PSA-wise--going down by half at each test and now at .64. Unfortunately his liver enzymes are up, so he had to take a two-week break from the Zytiga then go back on it in the last month. We'll learn more about his enzymes next week. He is often tired, but right this minute is on a 3-mile run. We do have another big overseas trip planned in September, something we scheduled in June before the liver enzyme situation cropped up. We're hoping the enzymes go down, get stabilized, or his MO has him go on a lower dosage, so that we can enjoy a trip. We're prepared either way to bail on the trip if there are some serious concerns or he has to start a new medicine right away. Or go if the numbers are better or he can do low dose of Zytiga.

I haven't updated my signature, so some of liver enzyme data isn't in there, but you can see the rest of his history. Your 3.18 at dx and his 3.38 at dx are not as dangerously low as other men who also have a high Gleason number, but a PSA lower than 2.5, which is often much more dire. So that's "good." (You will find that the definition of "good" bears no resemblance to the word "good" you used before your prostate cancer.) I will weigh in again as we get more information in the next week and a half.

Meantime, you and your wife sound so organized already and ready to take on the beast. That's a good start. And going to Johns Hopkins out of the gate is great. Do they have satellite hospital near you? We kind of toggle between Mass General and our satellite local hospital two hours away, though we see our Boston oncologist once a month. My husband had his nine weeks of radiation locally under the supervision of an MGH team, though he would've had HDR Brachy done in Boston had he gone that route.

So, tune in.

http://www.yananow.org/query_stories.php#topoflist

A bit of a late Welcome, but I've been away a bit.

My PSA was just 7 with a biopsied G4+4, but a post op G4+5, so a very similar situation. As with everything else, there are genetic variants, and we've found one of those.

Hello Marv,

Sorry you need to be here. I know the feeling of needing heartfelt, honest information in those early days & weeks when you’re making treatment decisions. You’ve come to the right place.

My husband was diagnosed Jan/2019. He’s 56 & G9. Had surgery in April & is currently on ADT and considering Radiation to start Sept. I’m glad you’re taking steps to educate yourself. This is a good place to help you make informed decisions. One thing I noticed w my husband, no matter how much I explained things or asked him do you understand, he admits now he really had no clue & that recovering from surgery was far more difficult & involved than he expected, meaning he really didn’t understand everything. Take the time to ask questions and get them to repeat it if you don’t understand. The treatment road can be complicated at first & it’s difficult on your spouse too. I had many sleepless nights, but as many told me you’ll settle into your new reality & life will start to make sense again. My husband is doing well after 3 months post RP. He was not a happy man for the first 2. No matter what treatment choices you make, you’ll have good and bad days but hopefully more good. We have a large yard as well. You’ll be able to enjoy your yard, even if on some days it will only be to rest in the hammock under a tree. Good luck & keep us posted. ~LjK

Hi Marv. I've been following you since you joined as your dx caught my eye. If you look at my signature you will see I'm low PSA (3.42) high risk 5+4gleason 9 (8-12 cores).
My treatment was ADT+IMRT+Docetaxel (chemo). There are very few of us low PSA high risk guys.
It looks as though you are doing exactly what you need to be doing....gathering info and learning as much as you can about PC.
What you have found is there is very little literature associated with our type of dx.
My treatment decision took many things into consideration. First and foremost for me was surgery was out. With the volume of g5 I had, the odds of the cancer being outside the prostate was pretty high. I did not want to go through surgery and then SRT because of the added SE that would no doubt happen. I am glad I made that decision.
Brachy was determined not an option for me because of urinary issues prior to treatment. Because of this I choose adjuvant chemo in order to give me one more option to fight this disease.
Now that I am 3 years out from dx. and am now dealing with post treatment SE, I can tell you I would not do the chemo because of the SE. I would have left that option for the future had I needed it. 2 years out from chemo I am dealing with neuropathy in my hands and feet,and tennitis in my left ear. I'm not sure those will resolve themselves anytime soon.
The one thing that I wish I had, would be a pathology report from surgery. At times it can be tough mentally not knowing for sure what my dx is, even though having a path report still wouldn't be 100%. Having had this go through my mind over time has not caused any regret of my treatment decision.
We are all different and everyone's dx is different even if very similar.
At this time I have stayed undetectable. 05 as of last month. I have come out the other side as will you. It is a crazy ride and the toughest thing I ever went through.
Stay the course and keep up the battle and before you know it ...you to will be on the other side of this.

Mark