Salvage surgery or salvage radiation?

Posted by prettypass2000 @prettypass2000, Feb 12 7:12am

Hi, I am new to this group. I really need your inputs please. After 5 years of remission, my husband's prostate cancer is back. He had radical prostatectomy in May 2021 (47 years old, Gleason 8, stage 3Tb) in Germany. We switched him to the comprehensive cancer center(CCC) afterwards. On Jan 29 of this year, his PSA level went above 0.2, so the PSMA PET/CT scan (using
18F PSMA-1007 tracer) was done on last Wednesday. We met with his urologist, who is also the chief urologist at this CCC this morning. The scan show one pelvic lymph node on the right was infected. Two options of treatments were offered:

Option 1: highly recommended due to his age (52)=> getting salvage surgery to remove all of the lymph nodes in pelvic area plus a bit further more area. Then do PSA test 6 weeks after in order to recheck and determine if he should also be on ADT therapy.
For this option, they can get his surgery done as soon as next week if we can get pre-approval from our health insurance.

Option 2: salvage radiation. They seem to hesitate to go to this route. I know when you get radiation, there’s the limits of how much you can get it done in your lifetime. It seems they want to hold off on this option.

With either option 1 or 2, it still doesn’t rule out ADT treatment or salvage radiation in the future. My question “Is it normal to do option 1?” I’ve seen the posts about it, but I’m kind of nervous. My husband is more on option 1. I’m in between and can’t decide which one will be the most suitable option for him.

P.S. the professor doctor also recommended that my husband should get BCRA and gene mutation testing because his late mother had breast cancer(BCRA1) and because we have two boys. We’re so happy that finally a doctor agreed with us that the genetic testing is ideal for his case. I’ve done research on it and feel that it’s best that my husband gets this genetic test.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

As someone who has BRCA2, I would highly recommend you get genetic testing. My father died of prostate cancer. My mother never had any cancer, but both her sisters had breast cancer, and one of my cousins died of it. My mother’s father also died in his 40s of pancreatic cancer. I got a doubling of the chance of getting prostate cancer from my father and BRCA2 from my mother, so I got it at 62. My brother, who didn’t have BRCA2 got it at 77 due to my father. Getting it so young, makes the chance of having a genetic problem very high. You want to find out now so you can get your children tested?.

One of the other people in this forum @dinu Is in the military in Germany and got prostate cancer at 47. He has the genetic problem of ATM, which Has caused some serious problems, but is the reason he got it so young.

Must admit I’ve never heard of having option one, but it makes sense if the lymph nodes are in the area where they would do salvage radiation. They could use SBRT radiation to zap the lymph nodes but then it might make it impossible to do salvage radiation next. This definitely leaves him open to having salvage radiation in the future.

I had a prostatectomy at 62 and 3 1/2 years later it came back so I had ADT followed by 8+ weeks of salvage radiation. I had no side effects from the salvage radiation until six years later when I started having incontinence issues. That could’ve been due to the surgery or the radiation or both. I’ve had four reoccurrences and had to have a metastasis zapped on my spine three years ago.

I’ve now had prostate cancer for 16 years and have been undetectable for the last 27 months while on Orgovyx and Nubeqa. I’ve been on ADT for eight years because of the BRCA2. If I stop the drugs I’m on my PSA rises very quickly, One of the drawbacks of hereditary issues. These days prostate cancer is more of a chronic disease instead of a fatal disease so good treatment makes a big difference.

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Profile picture for jeff Marchi @jeffmarc

As someone who has BRCA2, I would highly recommend you get genetic testing. My father died of prostate cancer. My mother never had any cancer, but both her sisters had breast cancer, and one of my cousins died of it. My mother’s father also died in his 40s of pancreatic cancer. I got a doubling of the chance of getting prostate cancer from my father and BRCA2 from my mother, so I got it at 62. My brother, who didn’t have BRCA2 got it at 77 due to my father. Getting it so young, makes the chance of having a genetic problem very high. You want to find out now so you can get your children tested?.

One of the other people in this forum @dinu Is in the military in Germany and got prostate cancer at 47. He has the genetic problem of ATM, which Has caused some serious problems, but is the reason he got it so young.

Must admit I’ve never heard of having option one, but it makes sense if the lymph nodes are in the area where they would do salvage radiation. They could use SBRT radiation to zap the lymph nodes but then it might make it impossible to do salvage radiation next. This definitely leaves him open to having salvage radiation in the future.

I had a prostatectomy at 62 and 3 1/2 years later it came back so I had ADT followed by 8+ weeks of salvage radiation. I had no side effects from the salvage radiation until six years later when I started having incontinence issues. That could’ve been due to the surgery or the radiation or both. I’ve had four reoccurrences and had to have a metastasis zapped on my spine three years ago.

I’ve now had prostate cancer for 16 years and have been undetectable for the last 27 months while on Orgovyx and Nubeqa. I’ve been on ADT for eight years because of the BRCA2. If I stop the drugs I’m on my PSA rises very quickly, One of the drawbacks of hereditary issues. These days prostate cancer is more of a chronic disease instead of a fatal disease so good treatment makes a big difference.

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@jeffmarc Thank you so much for the advice. I very appreciate it. It's very valuable insight.

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Profile picture for jeff Marchi @jeffmarc

As someone who has BRCA2, I would highly recommend you get genetic testing. My father died of prostate cancer. My mother never had any cancer, but both her sisters had breast cancer, and one of my cousins died of it. My mother’s father also died in his 40s of pancreatic cancer. I got a doubling of the chance of getting prostate cancer from my father and BRCA2 from my mother, so I got it at 62. My brother, who didn’t have BRCA2 got it at 77 due to my father. Getting it so young, makes the chance of having a genetic problem very high. You want to find out now so you can get your children tested?.

One of the other people in this forum @dinu Is in the military in Germany and got prostate cancer at 47. He has the genetic problem of ATM, which Has caused some serious problems, but is the reason he got it so young.

Must admit I’ve never heard of having option one, but it makes sense if the lymph nodes are in the area where they would do salvage radiation. They could use SBRT radiation to zap the lymph nodes but then it might make it impossible to do salvage radiation next. This definitely leaves him open to having salvage radiation in the future.

I had a prostatectomy at 62 and 3 1/2 years later it came back so I had ADT followed by 8+ weeks of salvage radiation. I had no side effects from the salvage radiation until six years later when I started having incontinence issues. That could’ve been due to the surgery or the radiation or both. I’ve had four reoccurrences and had to have a metastasis zapped on my spine three years ago.

I’ve now had prostate cancer for 16 years and have been undetectable for the last 27 months while on Orgovyx and Nubeqa. I’ve been on ADT for eight years because of the BRCA2. If I stop the drugs I’m on my PSA rises very quickly, One of the drawbacks of hereditary issues. These days prostate cancer is more of a chronic disease instead of a fatal disease so good treatment makes a big difference.

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@jeffmarc My husband has been stressful, thinking that he would die if he doesn't get any treatments sooner. I have to reassure him that he won't, and we have time to see more specialists to find the best solution. As far as our health insurance goes, they already told me that they are not going to pre-approve this surgery claim until he sees the radiation oncologists. It seems they want to compare both summaries based on "evidence-base"

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Profile picture for prettypass2000 @prettypass2000

@jeffmarc My husband has been stressful, thinking that he would die if he doesn't get any treatments sooner. I have to reassure him that he won't, and we have time to see more specialists to find the best solution. As far as our health insurance goes, they already told me that they are not going to pre-approve this surgery claim until he sees the radiation oncologists. It seems they want to compare both summaries based on "evidence-base"

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@prettypass2000
Prostate cancer grows very slowly. Yes, he’s had a reoccurrence, but he has a few months to do due diligence and find out what the best options are.

I don’t think that option of having the surgery first and maybe salvage radiation, if that isn’t sufficient, could be a real good choice. Yes, you could have salvage radiation on the spot but doing the surgery could get the PSA back down to undetectable. I’m sure they’re going to do it arthroscopically which means it will not take a long time to recover. Ask the doctor about this.

There’s nothing wrong with seeing a radiation oncologist and discussing the options. It actually is advisable to do that. The cancer has not spread that much And there is plenty of time to see other options. If the radiation oncologist feels, they could zap the lymph nodes without affecting salvage Radiation that would be a real plus.

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Profile picture for jeff Marchi @jeffmarc

@prettypass2000
Prostate cancer grows very slowly. Yes, he’s had a reoccurrence, but he has a few months to do due diligence and find out what the best options are.

I don’t think that option of having the surgery first and maybe salvage radiation, if that isn’t sufficient, could be a real good choice. Yes, you could have salvage radiation on the spot but doing the surgery could get the PSA back down to undetectable. I’m sure they’re going to do it arthroscopically which means it will not take a long time to recover. Ask the doctor about this.

There’s nothing wrong with seeing a radiation oncologist and discussing the options. It actually is advisable to do that. The cancer has not spread that much And there is plenty of time to see other options. If the radiation oncologist feels, they could zap the lymph nodes without affecting salvage Radiation that would be a real plus.

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@jeffmarc agreed! I definitely believe that my husband should get second opinions and see the radiation oncologist(s) too. He had prostatectomy in May 2021. That’s the only treatment he has so far. Personally, I’m not rooting for surgery after seeing medical journal that is less favorable than radiation(plus ADT). I know either options come with risks and hope we have all information we need in order to make a decision. My husband was very nervous about the outcome after talking to the urologist this morning. I don’t because I feel like we only get one-side information presented(urology) while another side of information (radiation oncologist) is still missing. 😅

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Profile picture for prettypass2000 @prettypass2000

@jeffmarc agreed! I definitely believe that my husband should get second opinions and see the radiation oncologist(s) too. He had prostatectomy in May 2021. That’s the only treatment he has so far. Personally, I’m not rooting for surgery after seeing medical journal that is less favorable than radiation(plus ADT). I know either options come with risks and hope we have all information we need in order to make a decision. My husband was very nervous about the outcome after talking to the urologist this morning. I don’t because I feel like we only get one-side information presented(urology) while another side of information (radiation oncologist) is still missing. 😅

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@prettypass2000
This is a case where it would’ve been helpful to have you there when talking to the urologist. Men get freaked out when they had these discussions and it’s very difficult for them to think clearly and ask appropriate questions.

Lymph node removal is not a big deal if done arthroscopically it should be pretty straightforward and quick. Definitely need to speak to the doctor about this and get more information. It would be nothing like prostate cancer surgery.

While radiation was no big deal for me, I had no side effects, but there are many sessions. Some people do feel fatigue after the sessions. Some people get proctitis. I had 8 weeks of sessions and the lower radiation causes fewer issues. ADT is no fun for most people. If your husband can avoid it, it would be better to do it for as long as possible.

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Profile picture for jeff Marchi @jeffmarc

@prettypass2000
This is a case where it would’ve been helpful to have you there when talking to the urologist. Men get freaked out when they had these discussions and it’s very difficult for them to think clearly and ask appropriate questions.

Lymph node removal is not a big deal if done arthroscopically it should be pretty straightforward and quick. Definitely need to speak to the doctor about this and get more information. It would be nothing like prostate cancer surgery.

While radiation was no big deal for me, I had no side effects, but there are many sessions. Some people do feel fatigue after the sessions. Some people get proctitis. I had 8 weeks of sessions and the lower radiation causes fewer issues. ADT is no fun for most people. If your husband can avoid it, it would be better to do it for as long as possible.

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@jeffmarc Thank you for your inputs. I've contacted my health insurance. They are not going to approve this surgery unless my husband also sees the radiation oncologist. The issues they mentioned are
1. evidence-base in US which the outcomes of FSR favors the radiation more than the lymph node dissection. Another patient passed along this information to me as well.
2. cost: they gave us very high quote(30k euros) that I have to get it pre-approved from the insurance. They want it up front.
3. Our health insurance paid for the second opinions via telehealth after my husband's surgery in 2021. Another professor doctor/chief urologist at another university hospital reviewed his file and gave his opinions: adjuvant or salvage radiation in the future recurrence. I think this & the high cost play the big role on the insurance company's decision. They didn't say they're not going to approve the surgery, but they want him to see the radiation oncologist first. It's crazy.

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Interesting option of salvage surgery. After having salvage radiation, the surgery was not mentioned, I might go with that option knowing I can get radiation later. Salvage radiation can cause long term problems which I am experiencing to add context to my answer.

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Profile picture for prettypass2000 @prettypass2000

@jeffmarc Thank you for your inputs. I've contacted my health insurance. They are not going to approve this surgery unless my husband also sees the radiation oncologist. The issues they mentioned are
1. evidence-base in US which the outcomes of FSR favors the radiation more than the lymph node dissection. Another patient passed along this information to me as well.
2. cost: they gave us very high quote(30k euros) that I have to get it pre-approved from the insurance. They want it up front.
3. Our health insurance paid for the second opinions via telehealth after my husband's surgery in 2021. Another professor doctor/chief urologist at another university hospital reviewed his file and gave his opinions: adjuvant or salvage radiation in the future recurrence. I think this & the high cost play the big role on the insurance company's decision. They didn't say they're not going to approve the surgery, but they want him to see the radiation oncologist first. It's crazy.

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@prettypass2000 I’ve been following your discussion with @jeffmarc and he’s really said it all in reference to your husband’s recurrence.
I would just add that surgery to remove a visibly affected lymph node is no guarantee that there aren’t invisible micrometastases present. The surgery ‘could’ be useless if that is the case.
However, targeted high dose radiation to the single node (SBRT) can be given in conjunction with multiple lower doses (IMRT) to the entire prostate bed and ALL the other nodes; this would get everything.
Also, you might want to discuss the addition of at least 6 months ADT - Orgovyx if you can be approved for it. Best,
Phil

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Surgery is more often recommended in Europe, but it is important to get a second opinion directly from a Radiologist. I believe that you will find the Radiologost to have a different opinion.

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