Biopsy Results Back - Not Good - GC5 - Gleason 9 (4+5)
Greetings,
Just got my biopsy results via my medical portal. Not good. GC5 - Gleason 9 (4 +5). Looks like 7 cores are positive with a mixture of G8 and G9.
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
Comments
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Hi again,
Sorry for the bad results. Gleason rate 5 is the highest in aggressiveness but it can be treated.
You need to discuss the matter with your urologist but the most important will be the judgment on extraprostatic extensions. Gs9 cases got the risk for spread and that limits the options on therapies.
I wonder the location of the positive cores and the percentage of cancer in each one. Can you describe other elements reported by the pathologist. Did they report about seminal vesicles involvement?
How about existing extraprostatic extensions?
In your shoes I would request a bone scan (or still better a PSMA PET) before deciding on a treatment. The previous MRI is limited to detection of volumes and mass but you need to verify spread in lymph nodes (macroscopic) and bone.
Typically, contained cases are treated with surgery or radiation but non contained cases (extraprostatic involvement) are recommended to radiotherapy.
In multimodal approaches in risk cases, some doctors recommend combination treatments involving surgery for debulking purposes plus radiation of surrounding areas (including close lymph nodes) and adding hormonal treatment (ADT).
Multi therapies signifies multi side effects which would deteriorate to certain extent your quality of life.
Here is your story. I think it better that you keep inquiring in the same thread;
I recommend you to have your wife accompanying you for the next meeting. Prepare a list of question and take notes of the conversation. Here is a link for an idea on a list of questions;
Best wishes,
VGama
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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
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Hi again,
From the report, there are 7 positive out of 14 cores. They also identified perineural invasion (nerve bundle running lateraly but within the outer shell) which usually is related to bad prognosis in contained judgments.
The nerves is one of the routes for cancer spread.
The two extra needles (LA) may have aimed the lesion identified in the MRI. I wonder their location.
Though the positive cores are all from the left lobe, in my lay opinion, choosing radiation therapy may be the best shot. The apex seems to be the most affected area which also includes the identified perineural invasion.
It will be wise to get second opinions on the comments obtained in your next meeting with the urologist, probably from a radiotherapist.
Here is a link about treatments and the risks involved;
Best wishes and luck in this journey.
VG
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Update: I talked to the PA yesterday about my biopsy results. She said the next step is to get a 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 aggressively 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 am 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 seem 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 would be greatly appreciated.
Mark
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Hey @marco1910 sorry to hear of your biopsy results, though glad you found out.
I would consider getting a consultation with a radonc now, or at least scheduling one now. Goal is to discuss possible results and potential plans of action while you wait for a PSMA. Also, to see if they are someone you would want to work with, so a job interview. No need to do everything in serial.
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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.
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Hi,
Good advice from the survivors above. Might want to get started looking at the various treatments available for agressive cancer so you can have questions ready to ask your team(Urologist + Oncologist). Don’t know if a month is too long to wait but being prepared to make a treatment decision once your PET scan is complete will help move things along. Sometimes you need to be your own advocate to help things moving along. I feel being educated on the various treatment protocols will only help with the dialogue between you and your doctor team. I have included a link to get you started on your homework.
Dave 3+4
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Hi again,
I understand your worry on spread while waiting for added tests, but the cancer would not spread in a way that it would alter the present situation or alter the options to treat, in one month.
The data collected from additional tests can influence in the choice of treatment if far metastasis (in bone, or at chest lymph nodes) are identified.
You need the opinion from a specialist not from a PA or GP. Take the lead and contact the hospital.
As I commented above, you have a high risk case for the type of Gleason rates and voluminous (7 out of 14 positive) meaning that there is a high probability for existing extraprostatic extensions, which would classify your case as "not contained".
In such condition surgery alone would not be practical, being radiation prefered. However, in high risk cases some doctors recommend surgery, not aiming cure but with the intent of debulking the chuck of cancer (the whole gland). Radiation would be added to treat the surrounding tissues.
Surely, one can choose radiation alone that would cover the whole gland plus the surrounding areas, avoiding the typical side effects from surgeries.
If the appointment with the surgeon is late then you can start with an appointment with a radiotherapist to discuss on radiation modalities, procedures involved, risks and options.
Survivors in similar status as that of yours have reported in IMRT alone, or combination radiotherapy with Cyberknife plus IMRT, or HDR brachytherapy plus IMRT.
Some doctors recommend starting with hormonal treatment (ADT) but you should get the tests done firstly as the drugs can influence the test outcome.
I recommend you to do some research on the types of radiation on Dr. Google, preparing a list of questions for the appointment, while waiting for the PET or bone scan.
Best wishes.
VGama
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Greetings,
Current Status: 66 yo, Gleason 9 (4+5)
Latest update: I got the results from my PSMA Pet Scan yesterday, and it was 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 now is the best time to try and beat this sucker.
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. This has been a rollercoaster emotionally to say the least but I really am grateful to have all of your help and experience.
Sincerely,
Mark
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@marco1910 thats as good as the news from a PSMA scan is going to get, so glad for that!
My only caution is that absence of evidence is truly not evidence of absence. The failure of the PSMA to find PCa outside the boundaries greatly decreases the odds that it is out there, for sure, countering the elevated odds due to having Gleason 4+5.
Maybe to help bound the treatment choice problem, ask yourself what you would do if you were sure you had micro-Mets lurking out there below the detection threshold, versus what you would do if you were 100% sure the PCa was isolated to the prostate.
Sorry to be a buzzkill, it’s still great news your PSMA result!
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Maybe if you see a radiologist he will put you on Casodex or something similar before doing radiation.....at least you are doing something in the meantime and gaining some time.....I am not a Dr by the way so maybe I should not be saying this.....if I was you I would be really not happy at all......you don't want to wait so much if your Gleason score is high.
With a high Gleason score probably all the fancy new treatments like HIFU, Criotherapy, Nanoknife, etc, etc, are out of the question.....
so probably surgery or hormone therapy with radiation are the better options.....
Why do you have to wait so much? You don't want the thing to get out of the prostate.
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Hi again,
No detection of far metastasis is great news. I think that now you have a complete set of data to make a decision and proceed. Why do you imply "2-3 months of wait" ?
Is there a problem with the insurer? or is the hospital that busy?
Radiation (RT) is advisable even if you choose surgery. The hormonal treatment becomes secondary but pairing it with radiaton improves the odds of success.
Regarding your questions;
1) The period on ADT of two years is reported to have "generally" better outcomes in G9 cases but my lay opinion is that 6 to 12 months would be sufficient. This period pairs the life cycle of prostate cells that lasts about 6 months to be certain of the death of such cell.
Some G9 guys in this board reported periods of 12 to 18 months.
2) The combination of surgery (RP) and ADT is not common. There is no studies showing long term survival for this kind of combi. But there are good survival outcomes in G9 cases with the combination of RP plus RT.
ADT is palliative and doesn't kill the bandit. It improves the work of radiation (the assassine) in killing cells.
In other words, if in doubt then choosing the "mother of all treatments", RP+RT+ADT could be a choice.
3) I question above your comment on the 2-3 months wait. Surely the cancer is multiplying every day so treating it within one month is advisable.
The PSMA scan result (image film) is usually blared at the surrounding closest area of the gland. This is caused by the excretion of the isotope via the urine that will be present in the bladder at the time when the picture is taken. The "ALL CLEAR" means that metastases were not found in close and far lymph nodes and bone. This verifies a localized case that could be or not to be contained.
It is true that ADT manages to hold the progress of the bandit. In fact some guys managed to postpone radical treatments for 5 years in ADT3 intermittent modalities.
In such cases, one needs to be followed by medical oncologists specialized in combination of drugs.
ADT3 is a combination of three blockades. Antiandrogens plus agonists plus 5α-reductase inhibitors (anti-DHT "dihydrotestosterone).
Not all Gleason rate 5 cells react equally to the same drug. Moderate cases manage to accomplish the same period in holding the bandit on just two blockades. For instance; an agonist (Lupron) plus xtandi.
in all, you need the advice of a doctor that you trust.
Diets or vitamins are good for the overall health but it wouldn't change your present situation.
Get second opinions always.
Best wishes,
VGama
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@VGama, thank you so much for taking the time to respond. I meet with my urologist early next week and the RO/second opinion the following week. I've just read in several posts that guys go on ADT for 2-3 months prior to radiation. I plan to get treated ASAP. Thanks again
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Hi, I was diagnosed in August 2019 with numbers very similar to yours - Gleason 9. Shock is putting it mildly. First, a bone scan was done to see if it had metastasized. Although it was termed very aggressive, it hadn't spread to the bone. So, the treatment plan was to start Eligard immediately to kill the testoterone and then begin radiation. The Eligard injection was to be given every three months for 18 months. Targeted radiation was done daily for 7 weeks. This was performed during the onset of COVID which added to the fear level. I've commented about Eligard in a separate forum. It was quite unpleasant with many side effects.
I completed the radiation in March 2021. My PSA remains undetectable. That is excellent news. However, I have radiation proctitis which began six months ago. (rectal bleeding most mornings.) The recommendation is Argon Plasma therapy which is done in combination with a colonoscopy. The therapy should flat out stop the bleeding. The colonoscopy is to search for any other issues.
I've had a very thorough physical in the past month and a recent CT scan. I'm in decent shape and walk daily. But, frankly, this getting old wears you down. I try to remain positive. I'm approaching 80. I'd like to have another 10 years to enjoy my grandchildren. So, I'll stick with the program and go get a urinalysis done Monday to eliminate bladder infection.
Best to you. Bill
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Just an update on my situation:
This past week I met with two ROs and another Urologist to discuss my DX and treatment plans. I decided that SBRT + ADT is the proper treatment for me. I've started an 18-month ADT treatment and will start the planning activities for the SBRT treatment, which hopefully be complete by the end of the year. Unfortunately, I need to get a colonoscopy this year, and I either need to get it done ASAP or wait 18 months after the SBRT treatments. I definitely don't want to delay SBRT, but I need this colon screening as well. Hopefully, we can resolve this ASAP.
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