Husband was diagnosed with Prostate cancer in Sept with a Gleason score of 7, post op his score increased to 9. What should we be looking to do next? The doctor took 17 lymph nodes and there was nothing but it not confined to only the prostate as we thought it was. Wondering if he should be taking treatments to lower his testosterone? This was not mention yesterday at his post surgical follow up and catheter removal. He has a 3 month PSA check should we bring it up then as he heals from surgery or ask about it now?
Gleason score increase, now what? - Prostate Cancer N...
Gleason score increase, now what?
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Holrico
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We’re the surgical margins positive? We’re the seminal vesicles involved?
42 is a young age. Also send slides for second read by Dr Levine at JH.
He needs to wait and see. Watch for PSA increases in the coming months. I hope the surgeon got it all and he never has to think about this ever again.
Thank you. That is our hope too, although the surgeon thought there was a decent chance he would need radiation, we are praying he doesn’t.
With your husbands adverse pathology (pT3b, pGleason score 9 and PSM) I think you should discuss adjuvant or early salvage radiation treatment now. Before any further treatment he must heal for several months.
So now or after he heals a bit?
IF he needs radiation treatment wait 4 to 6 months after his prostatectomy.
Should he think about testosterone treatments before the radiation? I just want him to get rid of the cancer. This is our second go round with cancer for him (he had head and neck cancer in 2015, almost 5 years clean from that one) just want him better. Want to do everything I can to support him.
IF he needs radiation (your 3 month PSA test might be indicative) hormone therapy (ADT) is NOT beneficial if radiation is started EARLY when PSA is still low (0.5). Hopefully he is not needing radiation. Focus on his healing for now. I which you luck!
What were the size of the positive margins?
What was the Gleason score at the margins?
Reads
MARGINS: Involved by invasive carcinoma
: Limited (<3mm)
Linear Length of Positive Margin(s) (Millimeters): 1mm
Focality: Unifocal
Location of Positive Margin(s) Right posterior
Margin Positivity in Area of Extraprostatic Extension (EPE): Present
Gleason Pattern at Positive Margin(s): Pattern 4
Thanks. The focal positive margins may turn out to be nothing. A recent trial found there was no difference in outcomes if salvage radiation was done immediately or if one waited for 3 consecutive rises in PSA or PSA hits 0.1 (whichever comes first). Studies also show no benefit to ADT if PSA < 0.6. Your first 3-month PSA test will tell you more.
Thank you. Hate that he is having to fight cancer again and just want the best for him. We do have an appointment scheduled with a Radiation Oncologist (they called today with an appointment scheduled for Dec 3rd) so if needed we can hit the ground running I’m thinking. Thank you again, I really appreciate it.
The trend of his PSA is the best signaling medium for further treatments. First PSA test is 4 to 6 weeks after surgery. I am also high risk and take PSA tests monthly. Quarterly tests, as you have been scheduled, can cost you time in deciding next step. I also interleave two labs, contrary to what you will be advised (same lab).
Personally I would do whatever it takes to get him to one of the best facilities in your area / country. PCa is slow but expertise does vary so don't mess around, be aggressive. If you feel comfortable please let us know what city / area maybe we can recommend some docs / facilities.
We are in the Phoenix area.
FYI
I am from the Las Vegas area (a 5 hr drive for you), had my prostatectomy at USC and am working with Dr. Vogelzang who is a well known Prostate Cancer Researcher & a MO in the Las Vegas area. Since the Phoenix area is large you might be able to find someone similar in your area.
Rick
With positive surgical margins there is the possibility some cancer escaped to the pelvis. Some will do adjuvant Radiation Therapy (do RT before imaging or PSA indicates it is needed ..... adjuvant RT could be based on positive surgical margins or extra-prostatic extension). Alternatively, some wait for RT until the PSA rises which would indicate a reoccurrence. This RT with a reoccurrence is known as salvage Radiation Therapy. Different Doc's think differently about this.
I had adjuvant Radiation Therapy based on microscopic positive surgical margins and microscopic extra-prostatic extension. I began RT 90 days after prostatectomy surgery. I was told to be sure I had good urinary control before starting RT as what you come into RT with you are likely not to improve on after RT is over.
There was a study that came out last year indicating there was no difference in outcome for adjuvant vs salvage RT. However, this study only covered the 1st 5 years after surgery. With this study some have changed their practice to waiting for a reoccurrence before giving RT (eliminating adjuvant RT) whereas others say "not yet" and are waiting for more long term data before getting away from adjuvant RT. My MO (Medical Oncologist) was of the thinking more long term data should be obtained and I was offered (and did) adjuvant RT. Your MO's thoughts may differ.
Positive seminal vesicles is significant as many authorities believe since the seminal vesicles are very vascular this is one common way the cancer gets into the blood & can form distant metastasis to the rest of the body (the bones for example).
Reoccurrence is monitored by serial PSA tests. For the 1st year after RT I had PSA tests every 12 weeks (= approx every 3 mo.).
Usually a rising PSA indicates cancer growing in the body somewhere. Often Imaging will not show if the cancer is in the pelvis or has spread to the rest of the body. Without having RT to the pelvis the cancer could be growing in the pelvis (from the positive surgical margins or extra-prostatic extension) or in the rest of the body (from the positive seminal vesicle invasion) or both.
I would think the MO would want to do pelvic RT first to eliminate this as a site (adjuvant pelvic RT would also eliminate this as a site for a future PSA rise) but I am not a Medical Oncologist (MO) or a Radiation Oncologist (RO) and their reasoning may differ from mine.
PSA tests will be important going forward and the 1st 5 years are the most frequent years of a reoccurrence. However, Prostate cancer can be slow growing and reoccurrences can happen rarely decades later ..... so once one has had Prostate cancer they are on watch for a reoccurrence for the rest of their lives ..... interestingly, Breast cancer is similar in this respect.
Testosterone Deprivation Therapy (ADT):
Some do ADT with adjuvant RT others do not. With your husbands adverse pathology your MO may choose to do ADT with adjuvant RT ..... if your husband should choose adjuvant RT.
BTW if you do not have an MO IMO your husband needs to get one. Urologists do surgery for a living and Oncologists treat cancer for a living. The fields are related but the MO's, generally speaking, have broader knowledge on how to treat cancer.
This is how it was explained to me & I hope this explanation helps.
Rick
Thank you so much, we have an appointment scheduled with an Oncologist for Dec 3rd and we will definitely go over everything with him. I truly appreciate your response, thank you.
I am going to suggest you not keep this all to yourself or just your family. Yes, it is personal but letting others know, at least generally, what has happened might save a life by motivating people get into their physician for a check-up. Often in Prostate Cancer there are no symptoms but only an elevated PSA.
Good luck to your husband & to you,
Rick
I sense a bit of panic on your part - which is understandable - but really NOT necessary.
His Dx (diagnosis) is not a death sentence - far from it.
You have received some good advice - but you'll note that there are different approaches you could take (based on different advise given within).
One thing I do agree with - you NEED to monitor his PSA - that will reveal a lot and that takes some time. A few months may be required to see if 'anything' is happening / if there is some residual cancer that has been 'missed'.
Surgery is a 'removal' process - so the question is 'did they get it all ?' There's also a time factor - because IF something escaped, it could be years before you even see it.
A Dx of G9 (vs. G6 or 7) is an indication of a higher risk with more of an aggressive nature.
Scanning for cancerous areas - specially when we are TRYING to detect at very low levels requires a very 'sensitive' detection level - 'normal' scans (the typical SOC) MRI / CT / bone) won't see the 'areas' / spots in the lower levels - (for arguments sake < 1 / and still castrate sensitive).
The low 'sensitive' scan is called a PSMA/PET scan - something that is not offered at HIS current state. In fact, you may need to pay for it - depends on a few factors.
So, to wrap up, he needs a bit of time (monitoring) to verify the results of his surgery.
IF he shows 'measurable' PSA - then additional treatment(s) would be appropriate.
Those treatments MIGHT include ADT and / or radiation. It is also possible that he is 'cured' - his Dx still offered that possibility, although the odds certainly aren't the best.
For what it is worth - I was a G9 at Dx - 3.5 years ago, was node positive (N1) with a PSA of 300+ and no distant metastasis detected (M0). The word 'cure' was still on the table. It isn't anymore - but there's a reason - I won't offer up an explanation - because it isn't relevant to THIS situation.
I underwent radiation( prostate and whole pelvic for lymph nodes - no surgery) and ADT.
Unfortunately, I have had a recurrence but it took 3 years to show up - My PSA rose for 4 consecutive readings - from basically '0' to about 5.0 today - I'm awaiting the PSMA/PET scan I mentioned.
I went over 2 1/2 years without any treatment - didn't need it - I was 'undetectable'.
I feel fine and I'm fully recovered from previous treatments. I fully expect to be around for a LOT longer. I'm older than he is and I was 'worse' at the outset.
You need NOT panic - this disease (IF it progresses) at HIS stage, is manageable and there is reason to be optimistic that IF he needs further treatment, he will respond well (most of us do) and there's plenty of TIME left.
There are advances in treatment options that are also encouraging. Do not despair.
Wishing you well on your journey ....
Thank you, I have been a bit panicked. Cancer has been an enemy of mine since it took my mother when she was 47. So when my husband was diagnosed 5 years ago with head and neck cancer I had a PTSD reaction and was put on anxiety meds for a little while. This time has not been as bad but it just seems like when I think everything is good and going well we get gut punched again with the surgeon saying well it’s not what I had hoped to see when I got in there. I just love my husband and hate to see him go through all this again, and there is always the fear of losing him and that feels unbearable to lose my best friend again to cancer. I want to help him kick cancer’s a** and I really appreciate the response and the information so thank you so much!
You've certainly been through a lot - more than most experience in their lifetimes. I just thought it important for you to realize that it is 'probably' not as bad as you think.
A 'DRE' and my other symptoms were enough evidence to confirm WHY I had been feeling so bad for quite a long time. Extreme fatigue and not being able to PEE will do that to you - I already had a catheter for over 3 months -before I even saw a urologist - I couldn't get anyone to look at me ! I kept going to emergency with infections ! Still NOT enough to see who I really needed to consult- I needed to break doors down to get attention.
When I got my Dx, I believed it was a death sentence - all kinds of things ran through my head - I was already counting down the clock - UNTIL I got the facts - I wasn't a prostate cancer expert and in fact I knew a lot less than I thought I knew.
Imagine these words being spoken to you - -YOU have advanced, aggressive prostate cancer. There are further tests that we need to do to find out what type of treatment you need - but I can confirm that you have an aggressive form of it' - I was floored !
In a matter of seconds - I asked - how long do I have to live ? I didn't get an answer - but I kept throwing numbers at him - no response.
Then - in the next sentence, my urologist (he broke the news in the first place) said - BUT this is a GOOD time to have prostate cancer! Some sense of humour I thought silently - what a jerk I thought ! You're NOT the one with THE cancer !
I didn't ask for any more 'information' - at least not from him - I 'graduated to a Medical Oncologist (at a cancer center) who was going to be the boss for awhile - perhaps forever. I was also introduced to the 'chemo' doctor =- I hadn't even started treatment yet !
It took awhile before I was able to connect the dots and really understand my condition. I read and read and read and searched and searched - you get the picture ...
This is what I discovered - NOTHING is etched in stone and many predictions are totally useless. Cancer is an individual thing and how one person reacts is no guarantee that the next one will be the same.
There are trends and similarities, however, and in my case there are several possibilities. I might be around for a long(er) time than expected - which is past 10 years - according to stats - so it turns out that advanced / aggressive gives me 10 years or more ? HUH ?
That is what you need to realize - don't make predictions and some people manage the disease well - few side effects from some treatments - some 'vacation' without treatment for years - like me - some have a recurrence - like me -
From the time of 'discovery' - you have had a 'recurrence' - to the time I (re)start treatment will be 6 months or more - with a rising PSA - that is not out of control - but rising it is. There are tests and scans to complete - I'm waiting for the LAST scan before it is decided what is next.
By the time I start treatment (could be spot radiation or ADT mono-therapy) there is no panic in me. No need for that.
This is a slow progressing disease for the majority of us afflicted ones and many men survive for years with a prognosis MUCH worse than your husband is facing.
Like I said, it's not good news, but there is no need to panic - the real facts and truth will be revealed in due time - but there's years to go before it COULD progress to a point when you start counting down the clock.
Remember the number 10+ - I put it out there - that is a conservative number and by then, the treatment options will have advanced - that's a bunch of IF and maybes.
Like the urologist said - this is a good time to get prostate cancer ....
Hang in there - the truth and real facts will offer some relief.
Same happened to me in 2008. PSA did go up 4 years later and had prostate bed irradiation. Still alive and well 12 years later and am on Lupron and Daralutamide.
Thank you. I don’t really do well with waiting, I am a let’s kill this thing and get going now kind of person. Inaction makes me feel helpless. Hearing stories of people who were in the same boat years ago does help and I really appreciate your post. So again, thank you.
You should ask your urologist for a DECIPHER test. Google it. It’s a genomic test to help determine the likelihood, or not, of the aggressiveness of the tumor, specifically the likelihood of metastasis. With that information, you and your doctor can decide how aggressive to be with radiation therapy. I wish you the best.
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