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Posted 8/17/2022 4:52 AM (GMT 0)
Back in May I joined this forum and after my first post, I have received an outpouring of supports from everyone here at Healingwell. Thank you everyone from the bottom of my heart as I was so lost, confused, scared and I am still scared, depressed about this PCa as this fight has just begun.
I would like to give an update on my husband’s situation and would love to receive your input/advices/comments from everyone that has been through the same situation or has more knowledge/experiences in dealing with PCa.
My husband has decided to have RALP and it was done on 6/15. His cancer at biopsy was 3+4 but it was upgraded to PTA3a (4+3, 60% pattern 4, 0 pattern 5) after his surgery. His surgical report indicated that he has perineural, lymphovascular invasion, HGPIN and possible focal margin. There are no invasions to his Urinary Bladder neck and Seminal Vesicle but the surgeon did not test or removed any of his Lymph nodes. His first ultra sensitive PSA test came today, it’s <.02 and that’s a good new but we also received his Decipher results, 0.69, today. I am so sad as every thing is a lot worse than what we have hoped for his PCa. We are scheduled for a teleconference with a NP on Thursday at 10AM and I am asking for advices so we can ask/plan for the next steps. Thanks so much in advance for your help.

Post Edited (ConfW) : 8/16/2022 10:55:10 PM (GMT-7)

Posted 8/17/2022 5:37 AM (GMT 0)
Glass 1/2 full. You basically have 3 options going forward.

A. Do nothing, monitor PSA every 3 months and if he has a rising PSA, do a PET scan, locate the cancer and try again for a cure.

B. Whole pelvic RT, adjuvant ADT for 18 months. It is a shot in the dark for a cure when he already may be cured.

C. Monitor PSA and do salvage whole pelvic RT and ADT if he has BCR. Again another shot in the dark, but with lower odds of full cure.

I did B, knowing what I do today I would certainly consider A.
Posted 8/17/2022 6:26 AM (GMT 0)
@Duck2, thank you. My husband asked for a PET scan a month ago but he was told that it wouldn’t be necessary until his PSA is increasing later on.

Post Edited (ConfW) : 8/17/2022 1:21:35 AM (GMT-7)

Posted 8/17/2022 11:17 AM (GMT 0)
I have a question about the path report. If the final path grade was pT3a, you should see a finding of extraprostatic extension (EPE) since AFAIK, only EPE and/or bladder-neck invasion can account for pT3a -- a definite positive margin(s) would not. If you check the report, it should mention whether extraprostatic extension was present or not, and if present, there should be a few words describing its extent, e.g. "focal, multifocal," or "non-focal." If it wasn't present, you might ask why he wasn't graded pT2 at your next visit. (EPE means that the cancer grew through the thin prostate capsule to some extent, whether microscopic or not.)

It's a shame that no lymph nodes were removed to check. In any case, a bone scan will probably be advised because of the upgrade to G7 (4+3). This is usually the lowest Gleason grade for which a bone scan is done.

We are not doctors, of course, but my hunch is that no further therapy will be advised unless either his PSA rises significantly or imaging shows evidence of metastases. While there were some adverse findings that increase the risk of recurrence, it is also possible that all the cancer was removed with the prostate-- if imaging is negative, only time (and his PSA) will tell.

Please keep us posted: we learn all the time, too. I wish you both all the best.

Djin
Posted 8/17/2022 1:56 PM (GMT 0)
Right now, the most important is to fully recover from the surgery and re-assess lifestyle choices like diet, exercise, stress management, etc. so he and you are in the best position to thrive over the coming decades. This will also strengthen and better condition both of you should he need further therapy.

Stay informed and positive.
Posted 8/17/2022 4:52 PM (GMT 0)
ConFW, thanks for the update.
My initial thought, and keep in mind everyone is different in their mental approach to this, is to do nothing as long as your husbands PSA remains undetectable. But its really important, in view of both the pathology and the Decipher score, to stay on top of it with PSA tests every 3 months at least for the first few years, if not longer.
Once you get a detectable PSA, and it is confirmed with a retest, i would be thinking treat as soon as possible. Dont listen to anyone including your surgeon, who tells you to wait until it reaches .2, which is the standard definition of biochemical recurrence.

Your husband may never recur, his PSA may remain undetectable, you never know, this is a strange disease. But obviously, its quite possible he does. Nobody knows. And you have no influence over whether it does or not, so please try not to waste a single day being depressed or nervous. He is free of recurrence until the tests show otherwise

Worst case scenario, he recurs, and is treated and will have a high likelihood of living for a very long time.
Hang in there
Posted 8/17/2022 5:37 PM (GMT 0)
@DjinTonic, Thank you for mentioned about the Bone scan as he has not had it done. The Decipher results have worried me and I am wondering if we need to do something else beside the bone scan. I agreed with you that the surgeon should have at least tested/removed some Lymph nodes while he was in there😥. I checked the surgical report and it said as followed:
“EPE: present, established left posterolateral midgland.
Margins: At the left posterolateral base, there is a small cauterized cleft in the prostate, with tumor extending to the cautery within the cleft. This finding raises suspicion for focal margin.”
I asked our daughter who has a biology major and she said they are not 100% sure because of the bleeding. We have not yet asked to have the slides sent to JH and I am wondering if it’s too late for us to get it done now. At this point, all we can do is hoping and praying that the cancer was fully removed with the prostate.

@JNF, thank you. It has been a rough 7 months for both of us and we both have lost a lot of weights. My husband is recovering well ahead of the curve but the stresses have been hard, especially for me. I always encourage my family to eating healthy for years and we went further now by eliminating red meats, eating more fishes.
Posted 8/17/2022 5:47 PM (GMT 0)
@Pratoman, thank you so much for your help and support, especially at this dark time of our lives. I am tearing up as I am reading the responses from everyone, thank you.
Posted 8/17/2022 6:01 PM (GMT 0)
Your husband's tissue and slides from the RP have been stored, so you can still request a second opinion from J.H.

It's possible that, based on your husband's (3+4) biopsy, the surgeon chose to collect nodes according to a small template (area bounded by anatomical structures) and that there just weren't any nodes in that area. I find this unlikely, since the most important nodes are those near the prostate, and the nearest are usually quite close. I didn't think any surgeons would deliberately not take any nodes for a 3+4 biopsy.

Some surgeons choose note to take any lymph nodes for G6 (3+3), and only a small number for 3+4. I find this problematic because there may be upgrading after the path exam, as in your husband's case.

Djin
Posted 8/17/2022 6:51 PM (GMT 0)
A big debate in the prostate cancer community has been between adjuvant radiation and early salvage radiation. When someone such as your husband comes out of surgery with bad or semi-bad pathology, when should you initiate radiation? Supposing his 3-month PSA is undetectable, you could either initiate radiation as soon as he has healed up from the surgery, or wait until his PSA begins to rise (which it might never do). I suggest that you read up on early savage versus adjuvant radiation before you next meet with a doctor. That will enable you to ask better questions and better understand what he/she says.
Posted 8/18/2022 2:30 AM (GMT 0)
ConfW, sorry that you and your husband are going through this. I agree with Pratoman. As long as your husband's PSA remains undetectable, there is no action needed. The key is to keep up with the monitoring schedule and to initiate treatment as soon as possible, should there be a recurrence, and before the PSA reaches 0.20 if possible. As others have said, you never know with this disease, your husband may be fine.

Sending you positive thoughts that you stay the course.

Rick
Posted 8/18/2022 3:31 AM (GMT 0)
ConfW, sorry about the situation and stress.

I saw on your prior posts some consideration about getting a second path opinion from Epstein/JH. I do not believe seven months is too long to have the path slides sent off to him for a second opinion. Your current docs may not be thrilled to do this -- I noticed in my uro and in others' posts that there may be a little resistance from current docs (don't like anyone looking over their shoulders, maybe?). But if you get the forms off the JH website, fill them out, have your payment to JH ready (check or payment as that website describes), then all your docs have to do is have the slides sent to JH. Second opinions are common in medicine and no reputable doc should be opposed (maybe just grumble a bit...).

Epstein is world-renowned. He will be able to fill in the blanks on your first path. Like, is there really a positive margin, and its Gleason grade. Also, he may be able to tell you what is the Gleason grade of the tissue at point of extension, where the cancer broke through the capsule. And other things missed/not reported on the first path report. I found the JH path process and their front office to be very helpful and professional.

Someday, this added info may be relevant in deciding how to move forward with treatment, if your PSA rises. I consider the few hundred dollars I spent on my Epstein 2nd opinion to have been very well spent.

Robert
Posted 8/18/2022 4:01 AM (GMT 0)
@Fiddlecanoe, thank you. I have been reading about early salvage versus adjuvant radiation today and I am more confused. It seems that there is no definite advantage for starting radiation within the 4 months after RP but we will see what the NP says tomorrow. We will have 2 more months to read/ research on this issue. Thank you for bringing it up as I am not aware of it before today. This PCa is still very new to me even after reading books and I have learned a lot from all of you through this forum. You all are so wonderful.
@Rich I, thanks so much for reaching out and sending positive thoughts. I have read about your situation and wishing you well in this fight too. Thank you.
Posted 8/18/2022 4:19 AM (GMT 0)
@Bobbiesan, thank you. Just like you, I believe we should be our own advocate for our health as doctors don’t care. We are just nails and they are hammers. I have tried to convince my husband since then and he has finally agreed to it. Thanks.

Post Edited (ConfW) : 8/17/2022 9:30:20 PM (GMT-7)

Posted 8/18/2022 4:24 AM (GMT 0)
I do not believe that standard of care for your husband's post-op situation with pT3a G(4+3), undetectable PSA, and (if demonstrated) no evidence of mets advises for adjuvant therapy, and I would be surprised if any is recommended. Recent studies specifically designed to look at the issue of adjuvant vs. early salvage therapy for adverse findings more serious than those of your husband are swaying the SOC pendulum away from adjuvant. The risk of overtreatment weighs heavily here.

Djin
Posted 8/18/2022 5:08 AM (GMT 0)
Adjuvant radiation therapy almost always improves the odds (see Cleveland Clinic post-op calculator). The question is if early salvage radiation provides as good results when PSA < 0.10 is being tracked with ultra sensitive testing and treatment is initiated when PSA gets to some level. A number of studies are trying to determine this as Djin noted.

My guess is that the test and see approach would be fine for his pathology while being prepared to go to salvage radiation if and when a clear rising PSA profile establishes itself at some level. It becomes less of a choice when Pattern 5 cancer shows up along with the other factors.

Keep in mind, there are lots of treatment options and be glad that this is not one of the other cancers that defy successful treatment. There is a silver lining inside this grey cloud in an odd way.
Posted 8/18/2022 6:35 AM (GMT 0)
Thanks so much Djin. You may not realized it but your comments, suggestions have helped me a lot and I have learned new information today. Thank you so much for your help.

@Mumbo, thank you. I have been looking at MSK before but I have never on Cleveland Clinic’s website, I will check it out about adjuvant radiations. You all have given me a lot of information, supports and I feel so much better today. Thank you.

Post Edited (ConfW) : 8/17/2022 11:50:21 PM (GMT-7)

Posted 8/18/2022 2:54 PM (GMT 0)
Cleveland Clinic is the only site I found that directly addressed ART. The second results line is the one you want to look at as it is based on the later study noted.
Posted 8/19/2022 3:10 AM (GMT 0)
My husband talked to the NP this morning and at this point he just needs to do his PSA tests every 3 months and as long as the results are remaining undetectable, nothing else is needed. He asked about getting a bone test done and she said it is only done before the surgery. @Djin, my husband asked why didn’t the surgeon removed some of the lymph nodes for testing. She said the surgeon had the whole prostate out and they have new techniques to checking out the lymph nodes without removing them. So we are hoping and praying that all of his future PSA test results will remained undetectable from now on.
Thank you so much everyone for helping. Your comments/advices/good thoughts are so much appreciated by us, especially me as I felt so sad in the last two days after receiving my husband’s Decipher test results. This community is so wonderful, everyone is so nice and very supportive of each other’s. Thank you.
Posted 8/19/2022 4:32 AM (GMT 0)
Don't reply a lot to posts as I defer to much more knowledgeable individuals. Your stated concerns are familiar and therefore understandable. I am not offering advise maybe just some comfort. Go to members in drop down menu in "N" believe page 87. Find Norcol and see if my comment of 01/28/22 helps any. I wish you and your husband blessings . Respectfully
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