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Prostate Cancer, Gleason 9 at 48 years old

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Posted 9/26/2018 7:28 PM (GMT 0)
Michael_T thanks for offering some hopeful thoughts. It is also really encouraging that you had a similar diagnosis with one Gleason 9 and seem to be doing well years later. Of course I almost certainly have one bone met in addition.

My gut is telling me the bone met is a metastasis. It's a pain (around my right sacrum) that feels unlike any I have had before. It feels devious, like I might have imagined cancer would feel like. I am fairly athletic and have my share of aches and strains but have never had a pain like it before. It doesn't seem to be improving with rest and very light activities either. Also while my last PSA on Sept 5th was not sky high (10.1), on each DRE I am told I have a small prostate which I think makes even a moderately elevated PSA more concerning. I have also never had an injury or strain to that area that I am aware of. I am ready to do a bone biopsy if the UW doc concurs with that approach.

As for the Epstein second opinion I am working on getting that done now and that's where I hold out a little more hope. Especially since the initial reading had only one G9 that was 4 + 5 and indicated 80% of the "4" and only 5% of the "5".
Posted 9/26/2018 8:28 PM (GMT 0)
bobmars,

As another G9 guy (I was diagnosed at 50), I just wanted to say "Hello" and like others have already said, get all the facts you'll need to make your decision on treatment. I had a "suspicious" pelvic lymph node at diagnosis and had a needle biopsy performed to confirm it was actually cancer. Really, until it has been confirmed, it is just anyone's guess. Hang in there, we're all happy to assist anyway we can.


Bill
Posted 9/27/2018 8:09 PM (GMT 0)
Please keep your mind full of positive thoughts. Try not to dwell on the negativity. For me, that was worse than the physical toll it took on me.

I was 46 when diagnosed and treated. I understand the depressive thoughts on getting this at a somewhat young age. However, keep strong!

Take care!
Posted 9/28/2018 3:34 AM (GMT 0)
My husband had surgery at UW with Dr. Ellis. His Gleason score was 8 and 9 for one of the cores. We have Kaiser Permanente insurance but we had to pay out of the pocket for the surgery. The surgery indicated he has metastasis in lymph nodes. Any way, here in Seattle we have a lot of good doctors. Soon he will have his PSA retested and we'll see what are the next treatment options. He was told to have hormone therapy first and then radiation but he opted first for surgery.
Did you have your PSA tested in the previous years??Take it easy..I know these days...it's like a nightmare that you hope to wake up from..but just breath deeply..watch movies to distract your attention.Are you vegan or do you have some salmon? my husband was told to have salmon.
Life is tough what can we say!sad
Posted 10/2/2018 7:50 PM (GMT 0)
Another quick update. I saw medical oncologist Dr Peter Nelson at University of Washington / Seattle Cancer Care Alliance this past Friday. I feel good about the initial game plan we came up with. I will be staying with UW/SCCA from here on.

The immediate next step is a bone biopsy. This will do 2 things - confirm the single bone met is cancer and then if so allow for Oncoplex gene sequencing of the tumor. I also signed up for the "Gentlemen" study which allows my DNA to be tested for 30 cancer-associated mutations. /www.fredhutch.org/en/news/center-news/2017/10/gentlemen-study-aims-to-remove-barriers-to-genetic-testing-counseling-for-advanced-prostate-cancer.html Being that my father died of prostate cancer at 61, perhaps genetic testing will find something useful like a well-known mutation.

I did get a second opinion on the prostate biopsy but UW did it instead of Epstein lab. Dr Nelson said the UW people who did the review are very advanced and peers of the JHU Epstein Lab folks. Unfortunately it was slightly worse and not better. It appears there are two Gleason 9 (4+5) instead of one. The percent Gleason grade was still 4 = 80% and 5 = 5%.

Assuming the bone biopsy is positive, which seems high likely, I will start with Lupron right after to put the brakes on this thing. We will also consider adding chemo drug docetaxel or abiraterone/Zytiga. We will also consider treating the prostate with either surgery or radiation therapy. I made a separate post here about the pros and cons of prostate surgery when you are oligometastatic (limited mets).
/www.healingwell.com/community/default.aspx?f=35&m=4068568

Based on my age (48), an agressive, multipronged attack is likely. For now I am enjoying my last treatment free days although I am eager to act quickly based on the G9. I actually feel great right now aside from some pain in my right sacrum area (where the likely bone met is). I've moved my diet to about 80% plant based which is probably helping.
Posted 10/2/2018 8:26 PM (GMT 0)
Bob, it sounds like you have a solid plan of attack, and you're with one of the best groups out there. Keep us posted as you keep learning more and the plan solidifies.
Posted 10/2/2018 8:29 PM (GMT 0)
Glad to see you're making progress! Yep, Lupron should put the brakes on your cancer--good analogy! I took Zytiga as part of my ADT, although there are guys here that have done adjunct chemo as well. I think the confirmation on the bone met will likely determine which route you go. And to that point, I'm still holding out hope that it's negative. Fingers crossed and keep us posted!
Posted 10/2/2018 8:31 PM (GMT 0)
Good plan. Let us know what you decide on surgery vs RT. I vote for RT as you can treat a wider area of the prostate bed than surgery can.

Andrew
Posted 10/2/2018 8:46 PM (GMT 0)
Bobmars

I live in Walla Walla and recently traveled to Seattle to meet with Dr. Nelson. I am a G9 and was diagnosed about 2 yrs ago. I have been treated here at home after an initial consultation at Virginia Mason. I wanted a MO that specializes in PC and I researched and found Dr. Nelson.I was very impressed with him and the time he spent with us and the plan he set forth in the event that I need to see him again. UW/SCCA is a great place. I'm glad you found a Dr. that you have confidence in, which is so important.

If you look at my signature you will see that I went with IMRT+ADT+Docetaxel. For me I didn't want the double SE's from surgery and then the RT that I was likely facing anyways. The study you mentioned sounds like it is following the "Debulking" plan , but RT can debulk the prostate also. Also I had full pelvic radiation when they radiated my prostate. These are just the things that I considered as I went through my decision making process.

You have more than one option and you have a well respected MO so I would say you are in good shape there. Listen to your Dr. but the decision is yours to make.

Also ...welcome to HW. Its a great place to be for info and support.



Battle On Brothers!


The Artistic one - Mark
Posted 10/2/2018 10:54 PM (GMT 0)
Following you mostly silently, bobmars, but rooting for you bigtime. Sounds like you've got a great treatment team. Keep up the good work!
Posted 10/3/2018 12:02 AM (GMT 0)
You will not go wrong at the Dub...
Posted 10/3/2018 1:34 AM (GMT 0)
Looking good for the due diligence.

Roger
Posted 10/3/2018 1:42 AM (GMT 0)
You are absolutely a rockstar in my opinion. You are showing the maturity, composure and resilience that I have not seen before.
Posted 10/3/2018 5:32 AM (GMT 0)
Thanks again everyone for your thoughts and encouragement. The supportiveness, knowledge and different points of view one gets here are priceless. Can't get the same thing anywhere else. Past adversity taught me that anger, depression or self-pity don't really help you and you have to turn around from setbacks as quick as possible and push forward. Find a way to turn a bad thing into a good thing. I'm just hoping that once one or more treatments are happening I will still have the same focus and composure. I sure will try.
Posted 10/3/2018 6:32 PM (GMT 0)

Hello BOBMARS,

We're all here for you ~ this band of brothers ~

I was diagnosed in my 40s, as my treatment history shows, beneath my signature at the end of this post.

I was diagnosed with advanced prostate cancer five years ago --- by the time I was diagnosed, the prostate cancer had infiltrated both my lungs.

I got started on immediate treatments. My treatments have ALL helped me ... starting with the ADT shots, then jumping on the "early chemo" plan --- followed up by the medication known as ZYTIGA --- and most recently, a round of radiation treatments. My PSA has stayed in the low decimals, because of these systemic treatments.

No matter what treatment you might choose, the members here will be able to advise you and share first-hand experiences. You might want to check out the thread we put together entitled LETTERS TO THE NEWLY DIAGNOSED --- simply type that title into the search box at the top of your screen and you will instantly find it.

You have already experienced the sense of fellowship, friendship, and camaraderie here --- check in often, post as you wish, share an experience or two, and ask questions, whenever you wish.

Handshake from across the miles,
CYCLONE ~ Iowa State University
Posted 12/29/2018 6:46 PM (GMT 0)
Sorry it's been a while since I've updated this. I've been trying to be healthy and live my life. I have had a number of significant developments, mostly positive this time.

For starters, the bone biopsy that was done on the single spot (sacrum) that was suspected to be a metastasis was negative. Assuming the bone biopsy did not miss that is a BIG deal and suddenly gives me a lot more hope. Also the pain I had been having in the sacrum area in September seems to have vanished. We are now wondering if the "hostpot" could be from a bike crash I had back in August 2016. I didn't break anything in the incident but it was a very hard fall and I had terrible bruising near the sacrum area.

Then I got the results back from genetic testing and I was confirmed to have an inherited BRCA2 mutation. That is something that nobody wants but having that knowledge is a good thing and can be a possible treatment advantage. It could also be related to why my father died of prostate cancer at a younger than normal age. One of the genetic cancer tests I took was by Color Genomics ( https://www.color.com ). My experience with them has been quite good and anyone can take that test.

Because the biopsy was negative and the BRCA2 was positive, my treatment plan changed. The situation now was I no longer had any definitive evidence of spread but because I was Gleason 9 with perineural invasion, I would be treated as if curable but very suspicious for a spread.

University of Washington had a trial where I would go on a PARP inhibitor (Olaparib aka Lynparza) for 90 days and then on day 90 have a prostatectomy. The Olaparib is very, very expensive and not FDA approved for prostate cancer yet. It is FDA approved for ovarian cancer though and prostate cancer trials have been showing a lot of success with BRCA mutation folks. The Olaparib in theory should have less side effects than normal chemotherapy because it tries to target the BRCA defect healthy cells don't have.

Since I was suspicious for a spread, I opted to do this trial. It seemed like a good opportunity. My thinking was that this could be a good alternative to chemotherapy or hormone therapy. There was a part of me that was thinking why not go to prostatectomy right away.

Well now it has been thirty days on the Olaparib. My PSA at day 1 of the trial was 11.58. Now on day 30 my PSA was 13.47. I'm not too happy with that. I thought it would go down but the oncologist I am working with seemed to downplay this increase as a small one. I'm not sure if how much, if at all, he is biased to complete trials though. My surgery is scheduled for Feb 25th but I am now debating if I should try to move it up. If anyone has any thoughts on this latest decision, I would love to hear it.
Posted 12/29/2018 7:46 PM (GMT 0)
I have no suggestions for you but thank you for the update. I appreciate your willingness like so many others to participate in a trial. Good luck with the surgery. There are many postings here about what to do post op so be sure to read up. Early hint: take Miralax or similar and walk. And walk some more. In fact if you are not already into an exercise routine start now. It makes you stronger for the surgery & after. Guess I did have some suggestions.
Posted 12/31/2018 7:52 PM (GMT 0)
With a Gleason score of 9 I will be getting my prostate removed or getting radiation ASAP I had a Gleason score of 6 my prostate removed my father had radiation cancer came back 5 years later he had it froze I have no more signs of cancer but with the surgery you will have to deal with incontinence and also a shortened penis but main thing is getting that cancer out as soon as possible I wouldn't wait around I wouldn't play around with it once it spreads and get in the bloodstream may not be able to run it down and cured it talk to your urologist about it
Posted 12/31/2018 9:35 PM (GMT 0)
Bob,
At this point, after such amazing responses from our incredible brotherhood here, there's not much I can add for now. Just know we are all here for you and that a lot of positive things can happen in a short period of time. A year ago I had a PSA of 60, bone and lymph mets in a dozen places. But every treatment I've had since has worked. Casodex, Lupron, Docetaxel (chemo) and now Zytiga. Scan in July showed 90-95% of mets are gone. Still working, still working out (it's HARDER THOUGH!) and PSA was 0.4 last month.
Stay positive, know that this is a journey, not a dead-end street. We're all with you.
Steve
Posted 1/1/2019 1:34 AM (GMT 0)
Well said Steve well said!
Posted 1/6/2019 9:56 AM (GMT 0)
Hi Bob, just followed your story. I wouldn't waste any time getting it out. PSA of 13 is starting to push the limits I believe. PNI is a feature of all high grade cancers but doesn't mean it has spread. I had a PSA of 8.2 G9(5+4) surgery 4 weeks after biopsy and over 2 years later undetectable psa no problems with erections, despite unilateral nerve sparring only and continence was never an issue. Being young you have a good chance of a good recovery. Don't waste any more time if you can help it. Once high grade gets moving it really moves quickly
Posted 1/6/2019 6:25 PM (GMT 0)
Bob, hoping for a good result for you. I’m also a GS9 with a PSA of 12, and they also thought they saw something on my scan. Had a biopsy done on my ischium which is part of the pelvis structure. Turned out to be nothing. Painless and quick procedure. No hospital stay required. Keep a positive attitude. You will get through this. All of it.
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