Greetings,
Just got my biopsy results via my medical portal. Not good. GC5 - Gleason 9 (4 +5) I have an appointment with the PA on Friday (in 2 days). A little bit in shock as it happened all so fast but also clear eyed. Wondering what the questions are that need to be answered, what the options are..etc. I certainly need to be educated.
Any guidance would be greatly appreciated.
Thanks
I won't try to answer all the questions you don't know you have ... yet. But I'll make two suggestions; particularly since your appointment is just two days away.
1) Go spend a lot of time at the Malecare.Org website. There's a tonne of solid information there: start with the "Newly Diagnosed" box. The great thing about Malecare info is that it is "neutral", i.e., they are not controlled by any hospital, or drug company, or anything else, so their information is clearly objective.
2) One of the most important 'man-to-man' pieces of advise that I received when I was in your shoes is "DON'T GO IT ALONE". The information comes at you at a furious pace, and there's tonnes of it. The doctor will tell you something and while you are digesting that sentence he'll say another whole paragraph about something else (which you'll miss). Find a person that will be with you on every visit, will take notes, will watch for times when clarification is needed, will read all the stuff you're given to study. The volume of information is overwhelming and it comes in a landslide.
Here is my pathology report:
A:Left Apex:Needle Biopsy
Diagnosis Summary :Adenocarcinoma; Gleason Score 9(4+5); Grade Group 5; Tumor measures 0.53 CM in length; 75% total tumor burden in core(s); 1 of 1 core involved; Perineural invasion identified.
F B:Left Lateral Apex:Needle Biopsy
Diagnosis Summary :Adenocarcinoma; Gleason Score 9(4+5); Grade Group 5; Tumor measures 0.8 CM in length; 80% total tumor burden in core(s); 1 of 1 core involved.
F C:Left Mid:Needle Biopsy
Diagnosis Summary :Adenocarcinoma; Gleason Score 9(4+5); Grade Group 5; Tumor measures 0.65 CM in length; 50% total tumor burden in core(s); 1 of 1 core involved.
F D:Left Lateral Mid:Needle Biopsy
Diagnosis Summary :Adenocarcinoma; Gleason Score 9(4+5); Grade Group 5; Tumor measures 0.46 CM in length; 35% total tumor burden in core(s); 1 of 1 core involved.
F E:Left Base:Needle Biopsy
Diagnosis Summary :Adenocarcinoma; Gleason Score 9(4+5); Grade Group 5; Tumor measures 0.08 CM in length; 10% total tumor burden in core(s); 1 of 2 cores involved.
F F:Left Lateral Base:Needle Biopsy
Diagnosis Summary :Prostatic tissue without significant histopathology.
F G:Right Apex:Needle Biopsy
Diagnosis Summary :Prostatic tissue without significant histopathology.
F H:Right Lateral Apex:Needle Biopsy
Diagnosis Summary :Prostatic tissue without significant histopathology.
F I:Right Mid:Needle Biopsy
Diagnosis Summary :Prostatic tissue without significant histopathology.
F J:Right Lateral Mid:Needle Biopsy
Diagnosis Summary :Prostatic tissue without significant histopathology.
F K:Right Base:Needle Biopsy
Diagnosis Summary :Prostatic tissue without significant histopathology.
F L:Right Lateral Base:Needle Biopsy
Diagnosis Summary :Prostatic tissue without significant histopathology.
F M:LA Lesion #1:Needle Biopsy
Diagnosis Summary :Adenocarcinoma; Gleason Score 8(4+4); Grade Group 4; Tumor measures 0.09 CM in length; 10% total tumor burden in core(s); 1 of 1 core involved; Perineural invasion identified.
F N:LA Lesion #2:Needle Biopsy
Diagnosis Summary :Adenocarcinoma; Gleason Score 8(4+4); Grade Group 4; Tumor measures 0.15 CM in length; 15% total tumor burden in core(s); 1 of 1 core involved; Perineural invasion identified.
Case Comments:The results of this case were communicated to Dr. Timothy Lesser in Microsoft Teams on 09/19/2022.
Electronically signed by : Sepi Mahooti MD on :09/19/2022 14:36:48
Pickleballplayer wrote --- " ... get that pylarify pet scan to see how far it spread. That'll help your doctors determine the correct course of treatment ... "
In agreement with all advice that has been given; however, IMO "the correct course of treatment" is subjective to one's comfort level of perceived outcome along with desired Quality and Quantity of Life.
7.5 years ago I was told a large GL10 tumor occupied the right half of prostate with lesser in left. At almost 65yo and wanting Quality over Quantity I chose to deviate from *suggested correct course of treatment* and proceeded with a unique treatment never before used because it allowed for what I perceived to be enhanced quality of life.
Not knowing how differently (better/worse) things *might have been* had I chosen an approved *correct course of treatment* brings no regrets r.e. my choice so I will suggest you continue to research then research some more, ask more questions then *flip a coin and never look back.*
Good luck.
Here are some questions:
prostatecancer.news/2017/12...
The first step should be to get a PSMA PET/CT and a bone scan/CT to rule out distant metastases.
make sure you see an experienced oncologist in a major cancer center.
where do you live?
I had a Brachytherapy procedure in 2012 and as my psa was increasing recently a petscan revealed a tumour in my pelvic lymph node. I consulted Mark Tuthill in Oxford recommended by my private insurance for a second opinion after a NHS diagnosis.
It seems my cancer can be blasted in a very secure targeted way but because the cancer was very close to the Utera the NHS did not possess the upgraded machine which could target the treatment satisfactorily!!
Now I am waiting to be blasted and hope that the inevitable hormone treatment can be postponed for ever!!!!
Hello 1910,
I too was recently diagnosed with G9 (4 + 5) adenocarcinoma. I have 3 positive cores out of 12 sampled. This by itself is bad news however, curative treatment attempts are still available if the tumor has not yet spread. My urologist went ahead and ordered the customary bone scan and CT. Both showed no evidence of gross metastatic spread. At this point, I met with urologist to discuss treatment options, either surgery or radiation therapy with or without ADT. Initially, I had decided to go with surgery. However, I later learned that Radiation Therapy offered me the best chance for survival. I then met with a radiation oncologist who immediately ordered the PSMA PET (positron emission tomography) and MRI scans. Once again, both showed no gross metastatic spread or lymphadenopathy. At this point, I met with a second radiation oncologist specializing in prostate cancer. He deemed me a good candidate for high dose brachytherapy + external beam radiation therapy (EBRT) + androgen deprivation therapy (ADT).
After spending considerable time researching my options, I agree that this treatment plan offers me the best chance. My MO started me on Lupron/Casodex neoadjunctively for 3 months presurgically. The aim here is to shrink the tumor before blasting it with radiation. I am 20 days into my ADT. At this point, I have experienced zero side effects. In fact, i can’t even tell that I am on ADT. I don’t know if this is good or bad. Late November, I will undergo a surgical procedure known as High Dose Brachytherapy, HDBT. Under general Anesthesia, the team will first inject a special gel, SpaceGel, between my prostate and colon. This acts as a spacer thereby reducing unintended radiation to my colon. Then they will insert needles through my perinium into my prostate gland, focusing on the tumor location. Once the needles are in place, radiation in the form of irridium will be temporarily inserted. Once a dose of 15 grey has been given, both the irridium as well as the needles will be removed. Although multiple HDBT sessions are sometimes used, mine will be a single session.
Following a short recovery time, I will receive 45 greys of additional radiation in the form of EBRT over 25 fractions. Even though the MRI and PSMA Scans were negative for spreading, my seminal vesicles and pelvic bed will be intentionally irradiated as well. This is a necessary strategy given that I have Gleason 9 cancer. It is possible for micrometastisis to have occurred and the scans were unable to detect it. So, the whole enchilada will be thrown in our attempt for a definitive treatment.
Finally, I am to continue the ADT for two years.
Hope this information helps you.
I had the same treatments but mine added Zytga for 18 moths to the ADT (also 18 months.)
is that a standard or common protocol to treat high risk PCa?
yes. Try searching for HDBT +EBRT + ADT in high risk prostate cancer patients.
They used to call them triple play, my oncologist decided to add Zytiga so may be we should call it quadruple play?
May I ask what was your HDBT dose? What is your ADT?
I am sorry I don’t remember, it was 2017 at UCLA with Dr. Demanes, it was a one session instead of two.
As far as ADT it was Eligard.
I will see if I can find the HDBRT report tomorrow.
I found a note that made and it was 15Gy all in one session. Other doctors may still practice 2 sessions with lower dose at each session.
Thanks for looking that up. My HDBT will also be 15 Gy followed by 45 Gy EBRT. It seemed a little low to me but it must be SOC values.
If your insurance is like mine they will probably require coarse CT and bone scans before they will spring for the fancier and more expensive and sensitive scan mentioned previously in this thread. This is a slow moving disease so take your time and do your research when selecting a treatment option. Urologists will suggest surgery -- that's what they do -- or maybe radiation if they have a financial tie to a radiation clinic. There are different kinds of radiation. Do your research. I chose HIFU but had to pay out of pocket. Good luck. You are in good company on this site.
ML,
You have received some good advice. I would add to get genetic testing done which may identify mutations which may open doors to other treatments available if needed. Please take a look at my profile. I am also G9 with Brca2 mutation. I’m 16 months into my journey PM me if you have questions about my experience. Knowledge is power especially with PCA.
Update: Talked to the PA today about my biopsy results. She said next step PSMA and it would take about a month to get it done. I've been running through tests since April (6 months) to get this far. I have G9 and feel that I should move faster and more aggressive because I don't want it to spread. I've had this condition probably for a while and this is all new to me so I concerned about it getting worse. Am I missing a window?
I understand there can be more bad news for the PSMA so we have to get a complete picture the waiting and timeline seems forever. Should I just chill and follow the process?
Another concern is I thought I would get more consulting from my Urologist. The PA said he would speak to me after the PSMA and answer any questions but he is a surgeon so if you choose radiation he will give me a referral. It's my choice of treatment but I'm not really getting any insights/experience/counseling. It seems to me that I need a quarterback (like a GP?) to help me. Am I wrong here? I'm trying to understand the process.etc. I'm considering scheduling an appt with another Urologist at UCLA to get a second opinion. Any thoughts here? does that make sense?
This is becoming my full time job at the moment, mainly perhaps because of my ignorance. Any guidance greatly appreciate.
Mark
Does a month to get the PSMA sound like a normal timeframe? This 'in-between' phase is really uncomfortable. Knowing that I have aggressive cancer yet not taking any immediate action on it. I don't have any sense of how my cancer progresses vs. the normal "system" process of diagnosing and treating the disease. I feel like I need to take action and not just sit here while I get sicker. I'm assuming this is a natural response. I'm definitely past the shock and acceptance phase and now want to try to fix or kill it.
UPDATE and QUESTIONS: Pylarify PSMA pet scan done and results - ALL CLEAR
No evidence of metastatic disease.
Very relieved to see this finding but also realize we are nowhere near done, but now we have the data to take action. I'm trying to study and decide RP vs. Radiation. I have a number of appointments in the next two weeks with both RO's and Urologists to discuss treatment options. I'm 66, very physically active, and realize the time is now to take action.
Questions I have:
With a PSMA pet scan as being clear, do I need ADT therapy? I believe the standard of care is 2 years with radiation with high risk PCa. PSMA Pet scans are new, and not sure if there is clinical evidence, but with a clear scan, perhaps ADT therapy should be reviewed. Does anyone have any experience with this?
My initial research seems to favor Radiation for high-risk (G9) Pca but again, if PSMA is clear if the glance is removed, would that be the end of it? or would it be safe to have 3-6 months of ADT to be sure
Finally, my treatment is not decided on yet nor scheduled. It could be 2-3 months before treatment begins. How do and ensure cancer does not spread in the meantime? As of September 28th, I'm all clear outside of the gland. How can I maintain that integrity until I get treated? This shows my total ignorance on cancer progression.etc. I've modified my diet.e.tc What other things can I do to slow it down. Should I go on ADT prior to treatment.
Any guidance would be greatly appreciated. Super new to all of this and like everyone it's been a rollercoaster emotionally to say the least but I really am grateful to have all of your help and experience.
Sincerely,
Mark
Gleason score without prostate biopsy
new and looking for resources Stage 4 metastatic. Gleason 9
Gleason Score 5+5
MRI fusion biopsy
Newly diagnosed Gleason 9
