Right before he got wheeled back for surgery, my husband’s dr came in. I assume it was for a pep talk, but it did the opposite. He essentially said “this is a good first step - let’s get this out and then prepare for radiation”. Surgery went fine and physically he’s recovering well (although only 4 days out). But mentally it’s like he got hit with a baseball bat right before being wheeled back. Up until this point the discussion had been surgery was “potentially curative.”
The RO, medical oncologist and the surgeon (at an NIH center of excellence) all had recommended surgery due to his age (52) and that things looked localized. His biopsy was a 7 - mainly 3+4 but had some 4+3 with cribriform. So we already knew he’s unfavorable intermediate and this is aggressive and that salvage radiation is a very real possibility. But to have it as the top message right before surgery!?!?
I’m so ANGRY about this and don’t know where to put that anger. When the doctor called me to tell how surgery went I very clearly told him I didn’t want him speaking to my husband without me there. The attending who helped with surgery came to debrief both of us later in the day, and we told her what the main doctor had said. She was great and tried to focus on the fact that until pathology came back, we really didn’t know anything and that talking radiation was getting ahead if things at this point.
I’ve been trying to talk my husband off the ledge while we wait for pathology. He won’t let me email the surgeon because we “need him on our side.” In the meantime I feel like I need to start hard core researching next steps wrt radiology. We weren’t impressed by the RO we saw initially - we don’t actually know what our next steps options would be.
Part if this is me venting in a safe space, but any and all advice appreciated.
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Sleepymonkey
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I agree with you. If the Uro was signing your husband up for a surgery/salvage-radiation package, that is a major factor in your decision and should have been discussed up front. IMO, one should never enter into surgery knowing that SRT will follow. The side effects of SRT are worse than primary radiation. I also disagree with his argument that your husband's relatively young age is a factor favoring surgery.
But what's done is done. Don't worry about pissing off the Uro - his job is done. Hopefully, the path report will be favorable and your husband's PSA will be undetectable.
This strikes me as outrageous, and I can’t blame you for how you feel. If it were me I wouldn’t want that urologist ‘on my side’ I’d be rid of him immediately . The surgery is done though as you well know. I would take my time on any further steps for now, but I’m confident you will seek better navigation from here. May he heal well!
I hate that this happened to you. But I had surgery and later found out that I would need radiation. All I can tell you is that my radiation was much easier than I feared. Now, it was 33 2-hour round trips to Duke Cancer Center; and I work full time. So, it was like a second job for a few weeks. But so far, so good. I am on ADT also, and PSA remains undetectable a year later. Chin up. Don't let negativity affect your outlook.
You sound like a very strong advocate for your husband. This prostate cancer is like a huge bomb going off in our lives. My 68 year old husband is now 2 weeks post robot assisted radical prostatectomy. His surgeon at Mayo won’t talk next step until 3 months appointment. He has advancedT3b aggressive cancer with Gleason 9, one positive lymph node, and bladder neck invasion. He said to go home and heal, do your kegels and enjoy life. ADT and radiation may well be the next step . The unknown is so hard to endure . The time delay surprised and alarmed us and despite reassurance from surgical team, I had to talk myself off the ceiling. I am trying to remember to take this journey one day at a time. To save my energy for what I do have control over, which is my attitude and choices. These frequent Adrenalin and cortisol surges are hard, and leave me feeling depleted and sad. But they pass and I know each day is a new beginning. Much healing love and prayers for us all.
My diagnosis was much like your husbands but I was 58 when starting my journey. I also had robotic surgery at Mayo and continue to be treated there. I am now 66. It seems like every few months there is a promising new treatment so look forward - not back.
Your husband may need aRT (adjuvant) or sRT (salvage radiation) or he may not. Adjuvant treatment would be radiation in the absence of BCR or PSA recurrence >0.2 and salvage otherwise; PSA does not return, but you proceed with radiation as a preventative treatment.
It is correct that this decision really cannot be made until the pathology report comes back. Everything will depend on that report. There are advantages to adjuvant radiation; go to Min 21:14 for the explanation of the 'adjuvant gap,' which means, the possible under treatment of 25-30% of cases that could benefit from radiation;
Also make sure that you consider genomics testing. I had Decioher testing. This type of testing will play a role in your decision, whether to proceed with adjuvant treatment or not. It is my opinion that genomics testing should be part of the SOC (standard of care) and that no one should proceed with any treatment with Gleason Score alone. A GS score is a visual classification of the PCa cell type. Genomics testing is a RNA classification . That will tell you how aggressive the cell type is. A low Gleason with a high genomic score would require more aggressive treatment. Likewise.A high GS with a low genetic score may give you some options for surveillance. Here is a couple podcasts to consider.
Next, look at these case histories as well that are followed in the podcast reference. It’s a great learning tool because you have three different patients and how they presented at initial treatment. Then. A panel of doctors will predict and prescribe follow up treatment. The patient’s actual condition is then revealed and you can compare how the doctors would’ve treated versus actual outcomes. It’s a great way to map out different scenarios for your disease depending on how the pathology of your husband cancer develops.
…if you do proceed with radiation treatment after surgery this is a good podcast that looks at its impact on incontinence. This is a side effect that does not get enough attention. I was advised that I could proceed with my salvaged radiation when I was “less than one pad a day“ which was not completely honest with its impact on my ability to not leak after radiation..
Your next critical decision is whether to proceed with ADT or hormone treatment. This is a really important decision. The negative impacts of ADT treatment on erectile function, are not discussed with men. Neither are the impact of the loss of testosterone. You should carefully consider whether to proceed with more than six months of ADT, pre RT (radiation) treatment. It may be beneficial to have six months of hormone treatment prior to any radiation, but in my opinion, anything beyond that has to be carefully considered. Aside from its impacts on erectile function and loss of testosterone are many metabolic side effects, which you need to know about before proceeding. Here is a good explanation of those effects.
.Also, consider getting a PSMA PET scan after a prostatectomy, and before any further treatment proceeds. Again, this should be standard of care. Only in this way can you make sure that you do not have any distant metastasis (MET). If a scan finds this then radiation to the fossa area of the prostate would be ineffective. This outcome would need chemo instead. Here is some information on this scan.
Good luck with your treatment. Let us know what happens and if you have any more questions. This is a great site where you can learn from the experience of others without regrets or worry. We are glad to share what happened to us in an attempt to help others, perhaps, avoid stepping in the same holes. Rick
RMontana, lots of good information and resources! Thank you. They did the Decipher genetic testing preoperatively which put him in very high/high risk/very aggressive. Lower androgen receptive and high cell progression. Basal molecular subtype and basal immune. Group risk 5. Bone scan was thankfully negative . Preop Pet scan showed the seminal vesicle and bladder involvement which was confirmed at surgery. Pet scan didn’t pick up the one node with a tumor, so that was a surprise . Post operative Gleason remained a 9 (4+5).
Ok, I did not realize that he has pattern five Gleason identified in the biopsy. Here is a good article regarding the percentage of Gleason five present in the biopsies, and it’s predicted value for overall survival. I provide us with all, hope that it helps your case. Take a look.
…also, if the genomic testing done or other analysis expresses a unique or uncommon cancer type, then germ line testing may be in order. Germ line testing is different than genomics testing and can help determine if there are specific characteristics of the cancer cell that would make certain medicines for treatments more affective. Take a look at this podcast. At Min 46:25; the threshold for doing both genomics and germline TESTING are for patients with positive lymph nodes, those with a family history of cancers, or having rare histology in their particular disease.
Let us know how everything turns out. I hope that you get the right type of support and can proceed into further treatment with some confidence that due diligence has been followed. This was not the case for me, and most of what I found out that I needed was after the fact. Even when I asked for it before treatment, I was rushed into forward without being able to make sure I was proceeding in a prudent manner. Good luck. Rick
thank you thank you for pointers to all of this information - I will be digging into all of it.
I asked for decipher and psma pet prior to surgery and long story short was fighting for the latter for so long that we were bumping into surgery. The ONE call with the dr I couldn’t attend, my husband agreed to forgo pre surgery. I’ve been reassured that we can do decifer on samples from surgery, so will continue to push here. He did do genetic testing overall since his father is 20 years into metastatic PC and we at least know that he doesn’t appear to carry genetic markers. But understanding more about his actual cancer (besides cribriform = v bad) would be helpful.
Again, thank you. My husband’s mental health took a major hit after diagnosis and he’s self-banned from dr Google and doesn’t feel like he has the capacity to join forums/groups. Hearing from others who have had similar experiences and have hope has been the thing I didn’t know I needed
Ok I understand now that the Decipher testing will be delayed until surgery. I suppose this is acceptable if surgery has already been decided as the treatment. My decipher was done with my surgery as well. It would be good to have the PSMA PET before surgery in order to make sure there is no metastasis (MET) but I see that they are dragging their feet to the point where surgery is eminent. I actually was going to pay for my scan out of pocket at UCLA Medical Center and at that time the cost was $2700 which I thought was not out of the realm of possibilities. It was only after I got the scan that my insurance company picked up the treatment. It ended up costing me more after deductible, co pay and out-of-pocket than I would’ve paid cash; another story. But it’s surprising that they would not do a PSMA PET, scan before surgery to make sure there is no metastasis and that surgery is the correct treatment to follow. That is why I insisted on mine first and then I had proved no metastasis before proceeding. But I understand how sometimes they can just wear you down to where you’re only decision is to not proceed with one treatment in order to wait for another.
…if you have a family history, or any other unusual Genetic characteristics of the cell, which are found in the Decipher TEST, then you may want to ask for germline TESTING. In fact I would ask for germ line testing with your decipher testing. They are not the same. In this podcast at Min 46:25; the threshold for doing both genomics and germline TESTING are for patients with positive lymph nodes, those with a family history of cancers, or having rare histology in their particular disease.
…if you’re wondering what type of genetic and genomic testing is available then this mapping may help. It’s the best that I’ve seen and shows as the disease progresses what should be considered.
…it’s good that you are in contact with our group. I empathize with your husband and understand where he’s coming from. But despair is this biggest struggle that we have with prostate cancer, and in my opinion, the state of mind that will lead to the worst outcomes no matter the staging or characteristics of disease that we have. It is the one thing we PCa patients have to avoid and fight against. I hope your husband reconsiders and reconnects to Dr. Google. I would not listen to Anecdotal testimonies of other prostate cancer patients. Not that these are unhelpful but they don’t address our disease and it’s progression in a scientific manner and allow us to make the best decisions going forward. Take a look at this podcast which talks about how a state of mind it’s just as powerful as any medication.
Good luck. Let us know how things progress and if you need any other help. There are plenty of people here that can assist. See if you can get your husband, reconnected and engaged. He needs to take good care of himself, exercise, and stay ahead of his disease. He can be the best advocate for himself and must always feel that he is in control of his disease and it’s treatment. Otherwise, this is going to be a very difficult time in his life. Best of luck. Rick.
Unless the surgeon found some compelling reason, I don't think radiation is called for. At 52 your husband would be a for the long term effects of radiation. It's the gift that keeps on giving, I know, I'm still getting side effects 25 years after my radiation. Plus, why was this not discussed as a plan in the first place?
You need to sit his surgeon down and hold his feet to the fire. I would see how well he does without radiation before lining me up for radiation. This makes me angry also.
thank you. Exactly! The discussion was that surgery was potentially curative, with the additional info that statistically he’s in a group that had reoccurrence at about 40% rate by 10 years. Also, his father had PC that reoccurred around 10 years after RP. So we touched on the idea that this may not be the end destination - but we signed up for surgery hoping for the best vs immediately planning for the next treatment option. I continue to cross my fingers that pathology goes our way and keep reminding my husband to not jump to the next fear immediately. But jeez, the surgeon made that hard.
This is a great place to vent and also to educate yourself so you can take charge of your treatment choices and make intelligent well informed choices.
the egocentric bastards .. get rid of all the docs who failed to disclose ALL pertinent and relevant information which could have effected your decision for surgery. You need a doc who will be on your husbands side. It’s hard enough fighting the “beast” much less your own docs. Report him to the BMQA Board of Medical Quality Assurance for your own closure and to protect other future patients of his.
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