My husband has stage 4 metastatic prostate cancer

Posted by lynnie4ever @lynnie4ever, Apr 16 10:35pm

My husband was diagnosed 2wks ago with prostate cancer following a biopsy.
He has gone through a petscan and an MRI. Today we met with a radiation oncologist and he according to the results of the scans has metastasized cancer that has gone into lymph nodes on both sides of his pelvis and into his lower abdomen. The radiation oncologist stated that now prostate surgery is off the table and recommend s he go into aggressive radiation and oral medication? Am wondering if surgery first would be the way to go then follow with radiation? Any imput would be greatly appreciated!

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@russ777

It was unclear from your description whether he was classified as Stage 4a or 4b. If the former, meaning locally advanced without distant mets, some oncos will tell you he can be cured for all practical purposes, especially if he is older.

Even with 4b, if the number and location of distant mets is less than 5, that would be what is called oligometastatic (translated - a few mets) and some oncos like Mark Scholz say that may be curable if the distant mets can be radiated.

Even if you could find an institution that would agree to both modalities of treatment it is unlikely your insurance would reimburse for both treatments since, from their perspective, RT to the gland, prostate bed, pelvic region and booster dose to known pelvic node mets is equivalent to RP when it comes to treating the cancer in his gland. And RP alone can't possibly treat the disease that's escaped the gland.

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"Even with 4b, if the number and location of distant mets is less than 5, that would be what is called oligometastatic (translated - a few mets) and some oncos like Mark Scholz say that may be curable if the distant mets can be radiated."

That was almost precisely my treatment at a major research cancer centre here in Canada for stage 4b (oligometastatic):

1. Emergency debulking surgery on the metastasised tumour (which had compressed my spinal cord and left me temporarily paraplegic).
2. Immediately started on ADT (Firmagon/Degarelix) and an androgen-reception inhibitor (Erleada/Apalutamide).
3. 5 rounds of SBRT radiation to the surgery site a few weeks later, when it had had time to heal.
4. 20 rounds of SBRT radiation to the prostate 6 months later.

Now I'm at 2½ years since diagnosis with no progression and undetectable PSA — I'm registered in the IRONMAN/TruNTH study, so I get a lot of extra blood work every three months and it's all in the green. While I have some side-effects from the hormone therapy and (much more) from the spinal-cord damage, over all, I feel better and more energetic than I did in the years before my cancer diagnosis.

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Another thread mentions that there's an article about the rapid progress in prostate-cancer treatments over the past 10 years in this month's Scientific American. Here's a direct link to the article online: https://www.scientificamerican.com/article/treating-prostate-cancer-at-any-stage/

And here's what it says at the very end about stage 4 prostate cancer:

"For patients whose cancers are advanced at initial diagnosis or progress and become metastatic, the treatment of oligometastases now often leads to long-term remission and requires fewer treatments with harmful systemic side effects. For those with more widespread metastatic disease, their cancer can now be managed with improved therapeutics based on a better understanding of disease biology. These new strategies have begun to transform this once rapidly fatal disease into a chronic condition that people can live with for years or even for their full life expectancy."

Basically, disregard *anything* you read about life expectancy unless it's based on data collected in the past few years. Even recent articles might be using data from studies conducted 10–15 years ago, when treatments and outcomes were significantly different. While we might not be all the way there yet, I sincerely believe we're at the cusp of advanced (stage 4) prostate cancer becoming a long-term chronic condition that can be controlled with medication, like being HIV-positive became with AZT and similar drugs, rather than a so-called "terminal" diagnosis like stage 4 PC was 5–10 years ago.

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@northoftheborder

"Even with 4b, if the number and location of distant mets is less than 5, that would be what is called oligometastatic (translated - a few mets) and some oncos like Mark Scholz say that may be curable if the distant mets can be radiated."

That was almost precisely my treatment at a major research cancer centre here in Canada for stage 4b (oligometastatic):

1. Emergency debulking surgery on the metastasised tumour (which had compressed my spinal cord and left me temporarily paraplegic).
2. Immediately started on ADT (Firmagon/Degarelix) and an androgen-reception inhibitor (Erleada/Apalutamide).
3. 5 rounds of SBRT radiation to the surgery site a few weeks later, when it had had time to heal.
4. 20 rounds of SBRT radiation to the prostate 6 months later.

Now I'm at 2½ years since diagnosis with no progression and undetectable PSA — I'm registered in the IRONMAN/TruNTH study, so I get a lot of extra blood work every three months and it's all in the green. While I have some side-effects from the hormone therapy and (much more) from the spinal-cord damage, over all, I feel better and more energetic than I did in the years before my cancer diagnosis.

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Agreed. As with others above, triplet works. By that is meant PSA goes down to 0.1 or < 0.1 even.

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@wellness100

Agreed. As with others above, triplet works. By that is meant PSA goes down to 0.1 or < 0.1 even.

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The WHO-standard for an "ultra-sensitive" PSA test (often used for high-risk patients, like those of us with stage 4 PC) is 10× as sensitive, going all the way down to 0.01 ng/mL. When your result is still "undetectable" using that test, you're in pretty good shape. I'm grateful that Firmagon (Degarelix) + Erleada (Apalutamide) have been keeping me there since 2021.

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@northoftheborder

The WHO-standard for an "ultra-sensitive" PSA test (often used for high-risk patients, like those of us with stage 4 PC) is 10× as sensitive, going all the way down to 0.01 ng/mL. When your result is still "undetectable" using that test, you're in pretty good shape. I'm grateful that Firmagon (Degarelix) + Erleada (Apalutamide) have been keeping me there since 2021.

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That seems a bit of a grey area at this point. Dr. Scholz suggested driving PSA further and further down from 0.1 does not seem to provide better outcomes. May be more data in a few years time will provide some clarity?
Agreed on reading too much into studies. The better ones do give warning that result is based on data collected some time back. It may no longer be valid.
Also most of these studies are written for professionals. It is better to read them with qualified medicals. For example, the small print of one of these studies said that the cut off is PSA = 0.5. Well, we know that there is a great deal of difference between 0.5 and 0.1. These studies were conducted purely to demonstrate that one drug or one treatment is better than others.
So much for the layman's rambling.

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@ozzie51

Age 72. Diagnosed february PCa extraprostatic. Not operable!
It has metastasized to L hip, R femur, both lungs.
Had bilateral orchiectomy yesterday with reconstruction (implants). Minimal pain and walking about today.
It was the right and best decision for me. Really a no-brainer for me.
Achieved a 95% reduction of my testosterone production permanently and immediately.
One less thing to worry about or manage.

Tomorrow we address other possible/necessary treatments.

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ozzie51, It sounds like you have a good team working quickly for you! Unfortunately my husband was diagnosed in an emergency scenario with biopsy of a peritoneal lymph node of which almost killed him as he because septic and thankfully recovered. His current oncologist and former oncololgist refuse to even mention orchiectomy; he was immediately put on Casodex and within a month on Enzulamide (Xtandi) for 5 months (PSA .34, which is down from a high of 717 in June of 2023) and now to start a PARPi. It took 2 months after his biopsy to get a PSMA-Pet so by the time he got it what he had initially was not as bad due to the meds working but he has metastatic disease in his lymph nodes, rib, should, spine and thankfully not seen in his any organs. He did get the somatic and germline testing so the PARP is suppose to address the gene mutations that he has and starve the cancer cells but with lots of side effects (husband is 76 yrs old, has heart disease, prior strokes, stage 4 kidney disease, 14 year survivor of bladder cancer) . His Oncologist refuses to do Chemo and radiation or radium 233 (he has no pain in his bones or lymph nodes at this time, he did several months backs). I believe his Oncologist is taking the OLD SCHOOL SOC vs the new to be more aggressive upfront treatment. Oncologist did say he thought Chemo would be too difficult for him to handle. Do you mind letting us know where you are getting your treatment? We feel that time is being wasted and whenever we ask questions the Oncologist tells us we are welcome to go elsewhere! Even his Urologist from a very good medical institution has not even set a followup date for him and is pretty much not providing any guidance other than bladder and prostate concerns (he has the Urolifts and stroke related issues called neurogenic bladder along with enlarged prostate). Praying that what you have achieved with your PSA reduction continues and you have several options for your treatment with minimal side effects.

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In response to the gal who asked me where my husband is being treated? His urologist and his medical oncologist and radiation oncologist are through Wausau Aspirus. We live in Rhinelander Wi. We are meeting with the medical and radiation oncologist's this Thursday at the cancer center here in Rhinelander! The overwhelming response from everyone is so appreciated. It validates that their are some very kind people willing to help despite what they are going through. May God Bless you all on this journey!

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@lynnie4ever

Thankyou All for your insight and information. As you all know getting this news is heart breaking and overwhelming! I felt the need to gather information and opinions from men going through this! My husband and I appreciate you all! Best of luck in this battle!

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lynnie4ever, don't say go away, yet. You and your husband will have more decisions to make.
In my opinion, radiation would have been a better choice even it the cancer hadn't escaped. But now you'll make choices about what type of radiation and where to have the radiation. That's is where this site is rich with experience.
If you haven't yet gotten somatic testing of the biopsy samples, you should request this from the doctor's office. It can take serveral weeks and can provide valuable direction. Decipher is one that most people have reported here. https://decipherbio.com/
Then you'll want several opinions from various oncologists. You can send the records yourself which I recommend (for speed) or have your doctor's office refer you.
Consider Proton radiation. The most experienced guy anywhere is Carl Rossi CA Proton https://www.californiaprotons.com/ He is seriously worth talking to because he is calming, deeply knowlegeable and he won't try to get a committment from you. Plus he does zoom appointments.
You're in a kind of miserable space, but your husband will probably be given androgen deprivation therapy which will slow or stop growth and reduce the size of the tumor probably for two month before treatment. The treatments are painless.
The gentlemen on this site are wonderful and will welcome your questions.

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@mscarepartner

ozzie51, It sounds like you have a good team working quickly for you! Unfortunately my husband was diagnosed in an emergency scenario with biopsy of a peritoneal lymph node of which almost killed him as he because septic and thankfully recovered. His current oncologist and former oncololgist refuse to even mention orchiectomy; he was immediately put on Casodex and within a month on Enzulamide (Xtandi) for 5 months (PSA .34, which is down from a high of 717 in June of 2023) and now to start a PARPi. It took 2 months after his biopsy to get a PSMA-Pet so by the time he got it what he had initially was not as bad due to the meds working but he has metastatic disease in his lymph nodes, rib, should, spine and thankfully not seen in his any organs. He did get the somatic and germline testing so the PARP is suppose to address the gene mutations that he has and starve the cancer cells but with lots of side effects (husband is 76 yrs old, has heart disease, prior strokes, stage 4 kidney disease, 14 year survivor of bladder cancer) . His Oncologist refuses to do Chemo and radiation or radium 233 (he has no pain in his bones or lymph nodes at this time, he did several months backs). I believe his Oncologist is taking the OLD SCHOOL SOC vs the new to be more aggressive upfront treatment. Oncologist did say he thought Chemo would be too difficult for him to handle. Do you mind letting us know where you are getting your treatment? We feel that time is being wasted and whenever we ask questions the Oncologist tells us we are welcome to go elsewhere! Even his Urologist from a very good medical institution has not even set a followup date for him and is pretty much not providing any guidance other than bladder and prostate concerns (he has the Urolifts and stroke related issues called neurogenic bladder along with enlarged prostate). Praying that what you have achieved with your PSA reduction continues and you have several options for your treatment with minimal side effects.

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Mayo Clinic in Jacksonville, Fl.
6 days post op an ZERO regrets.
If your urologist won't discuss orchiectomy then you have things to consider.

Best wishes and blessings.

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lynnieforever, It is very possible that the oncologist that said radiation is off the table may have meant "temporarily" off the tableo. My husband is in the same scenario except he has metasasis in lymph nodes, spine, hip, rib (over 5 so usually considered high volume from what I understand) and neither of his oncologist even spoke the words about surgery because (as my sisiter in law said) "oncologists want to put out the fire before lighting another match". Getting it under control and reducing the PSA which should also reduce symptoms such as pain which will also allow you time to learn and research. Hope you are able to get Germline and Somatic tests (Somatic is from any biopsy that may have been done) and both Germline and Somatic will provide valuable informatio in the event of any possible mutated genes that currently have possible actionable theraputic benefits as well as clinical trials that may apply. For my husband he was started out on Casodex for 1st month but immediately put on Xtandi (Enzalumide) and is now completing his 5th month with a large drop in his PSA to less than .2 from a high of 717 10 months ago; the Xtandi is his only ADT therapy at this time but about to start a new journey adding a PARP Inhibitor which was discoverd to be possibly be beneficial from his genetic testing. We are hoping that Radiotherapy which is referred to as Theronostics will soon be approved this year for MCRPC (metastatic castrate resistive prostate cancer ) for those that have not had Chemo (currently only FDA approval is with AT LEAST one session of Chemo. My husband is at the castrate sensitive (he is responding to the hormone therapy otherwise it would be called castrate resistive) so he is still not able to get Radiotherapy so we are wondering why he is not being offered such upfront; just more questions to ask the Oncologist I guess. Wishing you both well on this journey and you are able to get answers and quick treatment.

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