With regional lymph node metastasis what is the progression?

Posted by transreductionist @transreductionist, Jul 11 9:35pm

From the following summary what should I expect going forward other than Androgen Deprivation Therapy (ADT)?

SUMMARY

2020-06 Prostatectomy

Pathology:
Gleason 4+3
T3
Positive surgical margins
Perineural nerve invasion
Invasive carcinoma (cancer in surrounding healthy tissue)

2021-04 Salvage radiation therapy (SRT) started
2021-06 Salvage radiation therapy ended
2024-07 Undetectable PSA end of SRT to here
2024-09 PSA at 0.02
2025-04 PSA at 0.03
2025-07 PSA at 0.03

I was told that the cancer is probably in the lymph nodes at this stage. With such low PSA levels, it would appear to me to be oligometastatic.

Other than Androgen Deprivation Therapy (ADT), what should I expect going forward? Are low PSA levels like 0.03 typical of the start of metastatic progression? Any other context someone might give would be appreciated. I have read that the 5-year survival rate for regional lymph node involvement is 100%.

Regards,

Aaron

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

If you doctor told you that with a PSA of 0.02-0.03, you should talk to another medical oncologist, preferibly at a center of excellence.

REPLY
Profile picture for jime51 @jime51

I agree with Jeff that the rise in PSA is really minimal. I was diagnosed last fall with Gleason 7, N1M0 (iliac lymph nodes). I’m in my 7th month. Of Orgovyx and had 44 weekday radiation treatments during February to April. PSA last fall was 6.4, in May 0.01. Tested again 7/24.

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Thanks to all.

Both my Oncologist and Surgeon told me that the cancer had probably metastasized to the lymph nodes, although they could not be certain. That the cancer is oligometastatic, and its progression well documented in research. Each doctor has decades of experience treating prostate cancer, and I am comfortable with their assessment. It seems to follow from everything I have read.

My reason for chatting here was not that I was concerned about a 0.02 PSA value. Additionally, I am only somewhat concerned about a metastatic diagnosis. Not sure where anyone even got those ideas from. I have my ideas about that, but don't need to share those here.

My concern has always been with coming to a deeper and broader understanding of my diagnosis so that I can make better treatment decisions with my doctors.

This is one of the main points I took away from @kujhawk1978's (Hawk) post. I found those comments very helpful, and at the same time caring. All of my questions, and a bit more, were answered there. So, thank you Hawk!

I found that @jeffmarc (Jeff) posts did not add much depth to the conversation except for some unneeded editorialization. This was disappointing since he obviously knows a lot. Still, the content was helpful, if not a bit aggrandizing and sprinkled with hubris. So, thank you as well Jeff!

Check out "Treating Lymph Node #ProstateCancer Metastases | #MarkScholzMD #AlexScholz #PCRI " on YouTube.

I hope all the best in our journey down this shared road!

REPLY
Profile picture for transreductionist @transreductionist

Thanks to all.

Both my Oncologist and Surgeon told me that the cancer had probably metastasized to the lymph nodes, although they could not be certain. That the cancer is oligometastatic, and its progression well documented in research. Each doctor has decades of experience treating prostate cancer, and I am comfortable with their assessment. It seems to follow from everything I have read.

My reason for chatting here was not that I was concerned about a 0.02 PSA value. Additionally, I am only somewhat concerned about a metastatic diagnosis. Not sure where anyone even got those ideas from. I have my ideas about that, but don't need to share those here.

My concern has always been with coming to a deeper and broader understanding of my diagnosis so that I can make better treatment decisions with my doctors.

This is one of the main points I took away from @kujhawk1978's (Hawk) post. I found those comments very helpful, and at the same time caring. All of my questions, and a bit more, were answered there. So, thank you Hawk!

I found that @jeffmarc (Jeff) posts did not add much depth to the conversation except for some unneeded editorialization. This was disappointing since he obviously knows a lot. Still, the content was helpful, if not a bit aggrandizing and sprinkled with hubris. So, thank you as well Jeff!

Check out "Treating Lymph Node #ProstateCancer Metastases | #MarkScholzMD #AlexScholz #PCRI " on YouTube.

I hope all the best in our journey down this shared road!

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I am very early down this road, and Jeff is probably the most experienced among us, but from what I'm viewing and reading it seems that even the most aggressive oncologists don't act until the PSA has risen to at least .1 and some not until it reaches 1 or 2. For me, ADT is a severe treatment, taking Orgovyx and experiencing every listed side effect, but for some the issues are far less. During the spring when I was receiving both radiation and ADT, I came to the point of nearly quitting and my wife was supportive because of what she observed. I have felt some better since completing radiation, but unless I exercise regularly and vigorously I have no energy. At 73, I'm really concerned about quality of life and a bit less so about longevity, so I'm hoping to end ADT earlier than my prescribed 24 months. May your journey go well!

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Profile picture for transreductionist @transreductionist

Thanks to all.

Both my Oncologist and Surgeon told me that the cancer had probably metastasized to the lymph nodes, although they could not be certain. That the cancer is oligometastatic, and its progression well documented in research. Each doctor has decades of experience treating prostate cancer, and I am comfortable with their assessment. It seems to follow from everything I have read.

My reason for chatting here was not that I was concerned about a 0.02 PSA value. Additionally, I am only somewhat concerned about a metastatic diagnosis. Not sure where anyone even got those ideas from. I have my ideas about that, but don't need to share those here.

My concern has always been with coming to a deeper and broader understanding of my diagnosis so that I can make better treatment decisions with my doctors.

This is one of the main points I took away from @kujhawk1978's (Hawk) post. I found those comments very helpful, and at the same time caring. All of my questions, and a bit more, were answered there. So, thank you Hawk!

I found that @jeffmarc (Jeff) posts did not add much depth to the conversation except for some unneeded editorialization. This was disappointing since he obviously knows a lot. Still, the content was helpful, if not a bit aggrandizing and sprinkled with hubris. So, thank you as well Jeff!

Check out "Treating Lymph Node #ProstateCancer Metastases | #MarkScholzMD #AlexScholz #PCRI " on YouTube.

I hope all the best in our journey down this shared road!

Jump to this post

There is light at the end of the tunnel...

One of the dilemmas in our decisions to treat or not is the evolving landscape of treatment and imaging brought about through medical research.

When I was diagnosed in January 2014, the treatment choices were binary - surgery or brachytherapy. Imaging choices were single, CT and MRI, really not effective until PSA 20 or greater, of no use to me, diagnosed with a PSA < 3. Today, insurance companies aside, we can and do employ PSMA PET in the initial diagnosis,

Today we have a plethora of choices. The landscape and philosophy have changed, rather than monotherapy, each destined to fail with a certain end, now we combine treatments and bring them forward in our cancer to "overwhelm" it in its early stages.

Today we have a choice of which ADT agent, which radiation machine, we know that no, ARIs are not all alike, that while chemotherapy may be used early in recurrent PCa, the benefit may be in high versus low volume, genomic testing and profiling may be useful in individualizing treatment decisions, we have radioisotopes, PARP inhibitors....

Here is an example - https://www.urotoday.com/video-lectures/advanced-prostate-cancer/video/mediaitem/4908-psma-dc-trial-lutetium-sbrt-to-delay-adt-in-oligometastatic-prostate-cancer-oliver-sartor.html?utm_source=newsletter_14311&utm_medium=email&utm_campaign=prostate-cancer-daily

It may be that when the next time my medical team and I sit down to discuss treatment, ADT may not be on the menu! Intriguing...!

With this plethora of choices comes the possibility of paralysis by analysis, what is the right decision...? I argue there is not a right decision, there are good decisions based on the science - the NCCN, AUA guidelines, data emerging from clinical trials and our individualized preferences balancing quality and quantity in our lives:

This about sums it up for me - while living longer is an important goal, many patients also prioritize:
• Controlling PSA levels.
• Avoiding treatment-related side effects.
• Minimizing pain and functional limitations.
• Maintaining independence.
• Supporting their families
• Preserving overall quality of life.

REPLY
Profile picture for transreductionist @transreductionist

Thanks to all.

Both my Oncologist and Surgeon told me that the cancer had probably metastasized to the lymph nodes, although they could not be certain. That the cancer is oligometastatic, and its progression well documented in research. Each doctor has decades of experience treating prostate cancer, and I am comfortable with their assessment. It seems to follow from everything I have read.

My reason for chatting here was not that I was concerned about a 0.02 PSA value. Additionally, I am only somewhat concerned about a metastatic diagnosis. Not sure where anyone even got those ideas from. I have my ideas about that, but don't need to share those here.

My concern has always been with coming to a deeper and broader understanding of my diagnosis so that I can make better treatment decisions with my doctors.

This is one of the main points I took away from @kujhawk1978's (Hawk) post. I found those comments very helpful, and at the same time caring. All of my questions, and a bit more, were answered there. So, thank you Hawk!

I found that @jeffmarc (Jeff) posts did not add much depth to the conversation except for some unneeded editorialization. This was disappointing since he obviously knows a lot. Still, the content was helpful, if not a bit aggrandizing and sprinkled with hubris. So, thank you as well Jeff!

Check out "Treating Lymph Node #ProstateCancer Metastases | #MarkScholzMD #AlexScholz #PCRI " on YouTube.

I hope all the best in our journey down this shared road!

Jump to this post

Did you have a CT scan or an MRI That showed your cancer has spread to the lymph nodes? You haven’t mentioned it in any of your messages.

I’ve never heard of a doctor hypothecating that Lymph nodes have cancer spread without some sort of proof. Your six months of unchanged PSA, without drugs (You never said you were on any cancer drugs) seems to belie any suggestion you have cancer in lymph nodes. Why isn’t it increasing your PSA if you already have spread.

Something is wrong with this picture!!!

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Profile picture for jime51 @jime51

I agree with Jeff that the rise in PSA is really minimal. I was diagnosed last fall with Gleason 7, N1M0 (iliac lymph nodes). I’m in my 7th month. Of Orgovyx and had 44 weekday radiation treatments during February to April. PSA last fall was 6.4, in May 0.01. Tested again 7/24.

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We all agree with Jeff marchi. He s had PCA longer than anyone on this Forum. He s the man.

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Profile picture for ecurb @ecurb

We all agree with Jeff marchi. He s had PCA longer than anyone on this Forum. He s the man.

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Not everyone can agree with everybody. If only it were so!!!

Thank you for your positive comments.

I am wrong sometimes. When that happens, I do try to put in a correction.

I am definitely puzzled by this case!

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Profile picture for jeff Marchi @jeffmarc

Who told you the cancer is probably in the lymph nodes? I’ve had it for 15 years had Surgery then salvage radiation, No lymph node involvement. I have attended advanced prostate cancer meetings Weekly for the last four years. I have never heard of somebody being told by their doctor that when their PSA went from .02 to .03 that it was probably in the lymph nodes. That seems ludicrous, Is there some proof to that? The fact is that it goes to the bone much more frequently than it goes to the lymph nodes. You usually only see lymph node involvement early on before treatment.

Your PSA rose .01 over 6 months. PSA go up and down. A doctor will consider treating a cancer case when the PSA starts doubling at a fast rate. Your PSA has not doubled at all, Rising .01 over 6 months is not considered doubling. It appears you are in remission.

At this point, it is much ado about nothing.

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My husband went from undetectable after radiation to .02. Had the PSMA Pet Scan and found the cancer in 3 regional lymph nodes- 2 of which were in his chest. He is now on ADT Therapy and in remission. They told us it has more to do with “doubling time” then the actual PSA level.

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Hey
My husband got newly diagnosed with stage 4 PC in February! All because he thought he had an enlarged prostate and bladder problems. PSA was over 250, then CT scan showed outside prostate (advanced) Biopsy was Gleason 8 and 9s mostly, so very advanced, a full body PSMA PET scan showed everywhere! This all happened within 6 weeks or so and then finally we saw an oncologist!
After the CT scan we saw a urologist and he did the biopsy a week later.
He THOUGHT the Oncologist would suggest ADT and highly encouraged it.
My husband is 55 and in good shape and eats right and it hit him hard, it was his manhood! He was willing to die over taking testosterone away!
Even the month or so of waiting for the oncology appointment, he didn't want to do it, I pleaded and cried and got angry! That I would cut off my boobs or get whatever surgery if it meant years extra with my family! (we have 4 children, two are adults)
The Oncologist said ADT shot, ADT pills and chemo!
The ADT shots were first and even the day he had to do it, he refused! The nurse said she wouldn't do it against his will, I left the room crying! and still when he got out, I didn't know until that night that he did it!
He got Firmagon, which unlike Lupron, does NOT spike the testosterone (that can cause temper and anger etc.) The plan was to eventually switch to Lupron once the T was down, but these last 3 or 4 months he's stuck with the monthly Firmagon shots, though the doctor tries to make him switch.
Foolishly or desperately my husband also tried all sorts of supplements, and Ivermectin and Fenbentosol, not knowing it wrecked his liver! those numbers kept going up and up and my husband thought it was the injections but the doctors said no, the ALT got over 1500 which technically means liver failure, but he felt fine, no yellow eyes or brown urine.... but he at least got a wake up call and quit everything, they also sent him to get an ultrasound of the liver and whatever else is there, I think intestines and kidneys too, everything was fine, just not the bloodwork for a while.
Eventually the ALT got low enough that they told him to start the ADT pills (Zytiga) and Prednisone steroids.
The side effects from the shots (and I guess the pills too) is night sweats, some times crying, hot flashes, and no sex drive- AT ALL! Of course I'd rather have my husband with me and no sex life than a dead husband and still no sex life!
I know going to the gym helps a lot, he already did before all this, but now he's staying longer and tries also to do stuff around the house and he eats perfectly! No processed food, no carbs!
Then finally he started CHEMO and is about to have his 3rd session this week. That was a struggle for him to decide to do too, no begging or pleading or crying helped, he wanted to just do the ADT shots and pills and wait for the PSA to rise again so he'd qualify for Pluvicto! But a friend of ours is an oncology nurse and talked him into it, and to do all 6 rounds! instead of just 4.... we'll see.
The outlook isn't good, but maybe it's better than we think. Dr Google says 35% make it 5 years!
Though my husband is "young" when it comes to PC, he's healthy otherwise and FIT, so.....
WE know God is in control of all of this, but it's still very hard! (plus my husband's parents passed away last fall and my mom in February- it's been a rough year)
My advice about the ADT side effects is to keep moving!
I told my husband we can have hot flashes and night sweats together and cry over sappy movies! It'll be ok!!

REPLY
Profile picture for beaquilter @beaquilter

Hey
My husband got newly diagnosed with stage 4 PC in February! All because he thought he had an enlarged prostate and bladder problems. PSA was over 250, then CT scan showed outside prostate (advanced) Biopsy was Gleason 8 and 9s mostly, so very advanced, a full body PSMA PET scan showed everywhere! This all happened within 6 weeks or so and then finally we saw an oncologist!
After the CT scan we saw a urologist and he did the biopsy a week later.
He THOUGHT the Oncologist would suggest ADT and highly encouraged it.
My husband is 55 and in good shape and eats right and it hit him hard, it was his manhood! He was willing to die over taking testosterone away!
Even the month or so of waiting for the oncology appointment, he didn't want to do it, I pleaded and cried and got angry! That I would cut off my boobs or get whatever surgery if it meant years extra with my family! (we have 4 children, two are adults)
The Oncologist said ADT shot, ADT pills and chemo!
The ADT shots were first and even the day he had to do it, he refused! The nurse said she wouldn't do it against his will, I left the room crying! and still when he got out, I didn't know until that night that he did it!
He got Firmagon, which unlike Lupron, does NOT spike the testosterone (that can cause temper and anger etc.) The plan was to eventually switch to Lupron once the T was down, but these last 3 or 4 months he's stuck with the monthly Firmagon shots, though the doctor tries to make him switch.
Foolishly or desperately my husband also tried all sorts of supplements, and Ivermectin and Fenbentosol, not knowing it wrecked his liver! those numbers kept going up and up and my husband thought it was the injections but the doctors said no, the ALT got over 1500 which technically means liver failure, but he felt fine, no yellow eyes or brown urine.... but he at least got a wake up call and quit everything, they also sent him to get an ultrasound of the liver and whatever else is there, I think intestines and kidneys too, everything was fine, just not the bloodwork for a while.
Eventually the ALT got low enough that they told him to start the ADT pills (Zytiga) and Prednisone steroids.
The side effects from the shots (and I guess the pills too) is night sweats, some times crying, hot flashes, and no sex drive- AT ALL! Of course I'd rather have my husband with me and no sex life than a dead husband and still no sex life!
I know going to the gym helps a lot, he already did before all this, but now he's staying longer and tries also to do stuff around the house and he eats perfectly! No processed food, no carbs!
Then finally he started CHEMO and is about to have his 3rd session this week. That was a struggle for him to decide to do too, no begging or pleading or crying helped, he wanted to just do the ADT shots and pills and wait for the PSA to rise again so he'd qualify for Pluvicto! But a friend of ours is an oncology nurse and talked him into it, and to do all 6 rounds! instead of just 4.... we'll see.
The outlook isn't good, but maybe it's better than we think. Dr Google says 35% make it 5 years!
Though my husband is "young" when it comes to PC, he's healthy otherwise and FIT, so.....
WE know God is in control of all of this, but it's still very hard! (plus my husband's parents passed away last fall and my mom in February- it's been a rough year)
My advice about the ADT side effects is to keep moving!
I told my husband we can have hot flashes and night sweats together and cry over sappy movies! It'll be ok!!

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@beaquilter, I bet that felt "good" in a way to just write that all down. You and your husband have been through so much. I can only imagine how tortuous it was for you (and still is) when your husband made choices that didn't match the ones you hoped he would make.

He's young and you want him by your side for as long as possible. I get that. It sounds like you both have a good medical team and friends that are supportive.

If you think it would help him to talk with other guys, he is welcome to join the monthly Zoom calls. There's a summer break right now. But maybe he'd be interested in joining in September. See more info here:
- Prostate Cancer Support Group Meeting https://connect.mayoclinic.org/event/prostate-cancer-support-group-meeting-1-ca9b7341/

Do YOU have a good group of friends to lean on, Bea?

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