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.

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 have nothing constructive to add, but as a wife I just want to welcome you here and tell you that I understand your anguish and all worry and work that is involved in coordination of care. I am wishing your husband very successful next treatment, whatever it might be < 3

Thanks also for sharing information about this novel approach - it is almost unheard of here in the USA : (((.

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Profile picture for prettypass2000 @prettypass2000

@heavyphil Agreed! I feel like if we go with surgery route, how long will he be cancer free. This cancer is so sneaky, and they may not show up on the scan though they're somewhere else. That's why I think radiation is probably the best shot. Orgovyx is surprisingly cheaper in Germany. I checked the price at pharmacy in my town. 30 tablets is about 198 euros before insurance reimburses us back.

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@prettypass2000 WOW - that’s incredible! My RX was $2800/month here in the US.
With insurance, it was ‘only’ around $650😫…
Phil

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Profile picture for prettypass2000 @prettypass2000

@jeffmarc You're right. My husband had prostate surgery as his first treatment. When the chief urologist presented the option of salvage surgery to remove lymph nodes, I found it was odd. I feel that even with the best surgeons, they still can miss the microscopic cells that may not show up on the scan. We've had this experience from his first surgery, which all tests and scans showed no spread. However, they found 0.1 mm of cancer in one of the seminal vesicles during surgery, and it was confirmed in pathology report. That's why I'm very uneasy when surgery was offered again yesterday. I know very tiny trace of cancer can be missed even on PSMA scan. I don't get the idea of putting my husband through misery twice if the salvage surgery fails, and then he would need radiation.

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@prettypass2000 Yes, absolutely - NOTHING is going to detect a clump of cells. In fact, someone here on the forum once presented evidence that it has to be a few thousand or so before they will take up adequate tracer and show anything.
Also, this lymph gland dissection is not error free; who can say that more PCa cells won’t be released during retrieval and go elsewhere? Just my point of view, not disparaging your surgeon or his good intentions.
Phil

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Profile picture for heavyphil @heavyphil

@prettypass2000 Yes, absolutely - NOTHING is going to detect a clump of cells. In fact, someone here on the forum once presented evidence that it has to be a few thousand or so before they will take up adequate tracer and show anything.
Also, this lymph gland dissection is not error free; who can say that more PCa cells won’t be released during retrieval and go elsewhere? Just my point of view, not disparaging your surgeon or his good intentions.
Phil

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@heavyphil I totally agreed with you. Even though he's one of the excellent surgeons, I know they can miss those microscopic cells that they can't visibly see. It happened during his first surgery that the pathologist confirmed there was tiny trace of cancer in one of the seminal vesicles that didn't show up on the scan. It creeped me out when I heard the word "another surgery."

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Profile picture for heavyphil @heavyphil

@prettypass2000 WOW - that’s incredible! My RX was $2800/month here in the US.
With insurance, it was ‘only’ around $650😫…
Phil

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@heavyphil But other medications, such as Xtandi, Neubequa, Abiterone, and such are more expensive. They're between 1800 and 3500 euros ( price before insurance's reimburse). However, my husband has hypertension and a family history of Alzheimer's (his mom and grandma and great-grandma), so only Orgovyx or Firmagan seem to be the only best options

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Profile picture for surftohealth88 @surftohealth88

@prettypass2000
I have nothing constructive to add, but as a wife I just want to welcome you here and tell you that I understand your anguish and all worry and work that is involved in coordination of care. I am wishing your husband very successful next treatment, whatever it might be < 3

Thanks also for sharing information about this novel approach - it is almost unheard of here in the USA : (((.

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@surftohealth88 Thank you so much! Best wishes to you and your husband too. I was anguish because the chief urologist pressured my husband into saying yes to surgery without offering him a chance to meet with their radiation oncologist on Thursday. I then found out yesterday that they scheduled his surgery on next week. I kindly asked them to cancel the surgery appointment because I am not going to pay anything up front unless my insurance approved this procedure. Thankfully, I was able to schedule a consultation with radiation oncologist after showing up there and convincing them that my husband has the right to see the whole circle of treatments before making his own decision. I feel like had I not advocate fiercely, my husband will not be able to get all information he needs in order to make his decision.

P.S. Lymph node dissection has been used for a long time, but it's not popular. There aren't many studies about it. All studies show high chance of relapse (40%-60%). I don't think it's a good idea to go on this route when higher chance of relapse is possible.

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Profile picture for jeff Marchi @jeffmarc

@prettypass2000
Interesting definition of salvage radiation. Thanks for bringing it up.

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@jeffmarc I was able to get the PSMA PET/CT scan report. There is not evidence of any metastasis on other parts of body. Only one lymph node on the right pelvic is infected (SUV mean 25.3). Could you please explain what SUV mean 25.3 is? I have no clue.

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Profile picture for jsh327 @jsh327

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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@jsh327 I was able to schedule an appointment with radiation oncologist on this coming Friday.

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Profile picture for heavyphil @heavyphil

@prettypass2000 Yes, absolutely - NOTHING is going to detect a clump of cells. In fact, someone here on the forum once presented evidence that it has to be a few thousand or so before they will take up adequate tracer and show anything.
Also, this lymph gland dissection is not error free; who can say that more PCa cells won’t be released during retrieval and go elsewhere? Just my point of view, not disparaging your surgeon or his good intentions.
Phil

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@heavyphil

Here you go

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Profile picture for prettypass2000 @prettypass2000

@jeffmarc Yes, we live in Germany but using American private healthcare through my husband's employer. So, when we need a treatment approval, they use American approach to make a decision. When I submitted the documents for pre-approval, they requested my husband also see radiation oncologist before they make decision. It seems they want to compare notes between the two treatments. I do think they will favor radiation because there more "evident-based" studies. It seems lymph node dissection is one of the treatment for recurrence here, but it seems to be very limited studies.

You and @heavyphil are right about those microscopic metastasis. Upon discussion with another patient, he mentioned that sometimes the microscopic cells don't show up on scan because they're too tiny. It makes sense and makes me worried about doing surgery because it can miss those cells. I just don't want to put my husband through misery twice because the doctor said he highly recommended dissection and then do PSA test 6 weeks after. If it fails, he may need ADT or radiation or both. The limited studies I've found shows 40%-60% relapse after lymph node dissection.

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@prettypass2000

I've posted these before...

If even today's most sensitive imaging cannot see micro -metastatic disease, not sure what a surgeon can do to outdo imaging...

As I said, my urologist, who was very experienced and skilled, was opposed to surgery to remove lymph nodes when I had BCR.

I was thinking I had responded to this post but scrolling through didn't see it.

So, he's high risk given the clinical data you describe minus one perhaps critical piece, his PSADT and PSAV.

I don't think his medical team has laid out all his options:

Do nothing, continue to monitor. It could be some time before treatment is "necessary..."

MDT mono therapy which may delay the need for systemic therapy.

Doublet or triplet systemic therapy though in low volume cases the latter is generally of marginal value.

ARI mono therapy, EMBARK

There is the PATCH trial with the use of Estrogen.

I think the outcomes of treatment that drive the decision are:

PFS
RPFS
Patient preferences:

Desire to delay systemic therapy

Concerns with radiation side effects.

What would I do were I he?

MDT + short term systemic therapy, 6 months. I would likely use Orgovyx. I would hold on the ARI and add only if PSA did not drop to undetectable. Of course if you have to do that you are likely pushing systemic to 18-24 months...

If his PSA drops to undetectable in the first 3-6 months then that is a favorable sign for longer PFS and RPFS..

From my foxhole he is now managing this as a chronic disease, I'm in the "advanced PCa is incurable"...camp, rather it is manageable.

I think the group discussion provides a great degree of information to inform your discussions both you and your husband as well as his medical team.

Try not to go down the Alice in Wonderland rabbit hole with the horror stories about treatment surfaces. They are statistical, population based and historical, often not reflecting changes brought about by medical research and consequent advances. Where will your husband fall in the side effects impacts, unknown.

There are mitigating strategies, diet, exercise, managing stress, his medical team has options too.

The other thing I throw out because of the difficulty of measuring OS impacts of treatment is change the thinking from day 10-15 years to say 3-5, will this work for the next 3-5 years? Yes, great, we likely have more choices by then.

The good news, he had choices, the bad news, he had choices. I am also in the camp that says with a plethora of choices there are many good ones, there is no black and white checklist that says if that then this. "Plethora" can also lead to "paralysis by analysis."

After surgery and SRT failed using SOC from the NCCN guidelines my subsequent treatment decisions have been "hybrid" combining the guidelines with changes from CTs entering mainstream clinical practice and my preferences.

Like I've said about radiation, 69 treatments, SRT, WPLN and SRT, 155 Gya, side effects, none. I didn't lose my libido during ADT, still could achieve erections and orgasms. So, I may not be the one to ask...as I'm one or more standard deviations outside the "mean!"

Kevin

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