Hi, I am wondering how many of you have or know a patient that has abdominal lymph node only spread (in my husband’s case….the para-aortic and retro caval) and how you/they are doing currently? My husband’s treatment plan is in the bio. I liked to be armed with as much information as I can before his appointments, and we have one coming up. Thanks in advance!!
Stephanie
I have abdominal LN Mets. My case is in bio.
Thanks for sharing!
Here are two articles discussing PSMA PET detected M1a and how to treat it. (Pro and Con discussion)
Thanks! I really appreciate it!
I was diagnosed in March 2023. My initial PSA was around 25. I was not able to have surgery until late July. Pre surgery scans were encouraging but post surgery pathology indicated spread. In August my PSA had risen to around 35 and I had a PSMA PET scan that showed spread to abdominal lymph nodes.
I began ADT in September and waited to heal so I could have radiation treatments. I had 35 radiation treatments in February of this year and added Zytega in March. So far, PSA is undetectable and Radiation Oncologist talks in terms of remission and “cure”. Medical Oncologist is more measured, but is happy with my progress. He is encouraging me to stay the course on the hormone treatment based on the Stampede study.
I feel blessed that I am tolerating the treatment well, so I am determined to stay the course. I do experience common side effects of loss of strength, fatigue, sleep problems, etc. but I know that could be so much worse. I turn 66 next week and I’m retired. I now focus on my family, projects around the house, my hobby of restoring vintage audio equipment and enjoying the north Georgia mountains.
The new normal in my life is not so bad. I have a supportive wife, great kids and four beautiful grandchildren. I’m grateful for Medicare and my Plan G supplemental plan.
Thank you so much. You are so much like my husband both in your disease, treatment, age and interests! Best of luck to you, and I will keep you up to date on how my husband is doing!
Stephanie
Why so many delays? When I was diagnosed I was immediately was out on Lupron.
Prior to surgery I believed there was no spread. Lupron (three months of Firmigon and then on to Lupron) was started right after PSMA PET. Delays to get to surgery had to do with finding the right Urologist that was covered by my insurance (ACA - insurance I found to be horrible) and the hospital they practiced at also covered.
We only know what we know at the time we make decisions, but I do wonder if I had been on ADT prior to surgery, would I have done better. I think there are two issues preventing this from being offered. The side effects of Lupron are a concern where there is no evidence of spread. Also, insurance may not cover this without some indication of spread. Anyway, prior to my PSMA PET scan it was not a consideration. Now, I wish I had found a way to get the PSMA PET scan immediately after biopsy had confirmed the diagnosis.
I do try not looking back too much. I can’t change the past and I may miss the next thing in front of me.
Great news about your progress.
Based on your "grateful for Medicare" comment, I hope you consider that when you vote.
I voted the first day of “early voting” here in GA. I voted for the candidate I believe will protect the integrity of the Medicare and SSI system based on what they have a record of doing in the past. But, most importantly, I voted for the candidate that will stand up for our freedom, and protect the country my grand children are now growing up in.
I had tumors spread through out lymph nodes, treated with 6 month lupron shot and Xtandi. They gave me 3 months to live in January of 2023, and no tumors today. I also take cottage cheese and flax seed oil, plus Anamu. Hope this helps.
Thank you. That is very encouraging. Even fully systemic, I have heard of patients living ten years or more with new treatments. Pray you do as well!🙏
PSA 150 December of '23, Lupron, Apalutimide and 6 weeks of EBRT with dose painting of my abdomen earlier this spring for lymph node spread. PSA 0.02 since June 24 (checked 3 days ago). On ADT for 15 more months. Pee like I'm 16 again. Just the usual side effects of ADT. Hope things go well for him.
I had a similar path to your husband’s. Important differences are slightly lower Gleason and PSA at diagnosis, and specific timing and treatments. For this reason I go on a bit in case any of this should be helpful…
RP was in 2019. Despite undetectable PSA post op, I was advised to enter a clinical trial due to adverse pathology on report, including lymph node positivity. I have my opinions about RP but no need to describe here. No PSMA-PET commonly available at that time, also not yet FDA approved.
Thus the trial of IMRT, Lupron and abiraterone was augmented by a course of taxotere chemotherapy. The chemo would not be SOC for my T3B today, at least not in an undetectable patient undergoing a truly ‘adjuvant’ (vs salvage) post op treatment. It probably made no difference. But as part of a trial it was essentially experimental. it is easy to see how much has changed in 5 years; the more sensitive scans in particular have been a major game-changer.
All went well enough although treatment was all during the heart of Covid so obvious challenges there. On the advice of my team I actually stopped the course of ADT at a year instead of the prescribed 2. I am now over 3 and 1/2 years since full return of testosterone (the logical point to measure remission after ADT) and doing very well. PSA has been undetectable throughout since that first post op test in September of ‘19.
If you read any of my replies on here you can see they are mostly exercise related. I am basically a devotee of it for general health as an older person, but especially as one invested as completely as possible to doing what is in my control to prevent recurrence. There is emerging strong evidence to the specific benefits of exercise in this regard, which is truly fascinating. It saddens me that more of us do not take it seriously; less than 15% of those with a cancer diagnosis do much at all.
.I know a good number of men both here and elsewhere on lifelong ADT, and most will tell you it is both a QOL challenge and finite in its effectiveness. It’s obviously ideal to avoid that as far as possible.
I don’t want to know what my 18 months of testosterone suppression would have been like without dedicated strength and aerobic training. Incontinence, libido and ED issues arose as they often do but as we know there is help for these.
I had comparatively mild side effects on ADT, strength loss and fat gain negligible, consistently strong overall numbers (lipids, BP, A1C etc, not much in the way of brain fog, hot flashes etc. I ascribe essentially all of it to the exercise.
Naturally then I hope your husband takes it seriously also; it makes every aspect of this so much more tolerable and prevents otherwise inevitable- and quite dramatic- aging acceleration. Great luck to you both!
Thank you so very much for sharing all of this. My husband also uses exercise like a prescription drug. I am terrified of castrate resistance. We were told originally that he would be on lifetime ADT, but now they are considering 24 months if things stay stable. I appreciate you sharing your story and treatment. Take care!
Stephanie
At 80 you and I have identical approaches to exercise and fitness. It truly makes everyday living much more enjoyable.
My goal was NOT to necessarily extend longevity but to live my best life to the end.
Like you I am hoping that it is having a positive effect in fighting prostrate cancer. If nothing else my mental attitude towards life and this cancer is really amazing.
Sometimes modeling of this behavior has a positive effect. Both my sons and my grandkids are active exercisers and eat healthy. Wish I could say the same for my wife but she does have physical limitations as she has gotten older.
Thanks, yes we seem to have reached a point where longevity for its own sake is vastly overvalued in western society, and modern medicine, for all the good it does, isn’t particularly helpful in that regard. So we must look out for ourselves.
I think the young should regularly volunteer a bit of their time in nursing homes to get a better understanding of what awaits them all too soon is they stop moving.
Of course when I was young, I was essentially proud that I would die before I got old. A goal good enough for Roger Daltrey was good enough for me! A very convenient way to escape aging, or more accurately, a convenient way to put it out of my mind. We see how that worked out.
I saw in your bio that from 12/22 - 9/23 that he had undetectable PSAs. What test threshold was used during this time? <0.1? <0.02? Something else? Thanks.
It was the Quest <.04 test. When it started rising at .06, Yale used the three digit test. Now that he is in treatment, Yale told us the .<.04 test was fine for now. It is less anxiety producing for me.
Best,
Stephanie
I had cancer in abdominal nodes together with numerous bone mets at dx. I had my prostate and as many nodes as can be safely done radiated back in 2015, you can read my bio to see what I’ve done for treatment.
Ed
Coming up on seven years since my decision to have salvage extended pelvic lymph node surgery using the frozen section pathology method, done at uPSA 0.13. Six cancerous nodes were confirmed including para-aortic. To date NED and no ADT. All the best!
103532
I was a Gleason 7 (4+3) PET scan indicated PSMA uptake in Pelvic Lymph Nodes and 3 lymph nodes in Periaortic level.
No surgery, but immediately started on Lupron/Abiraterone/prednisone.
Then starting approx. 4 weeks later, 28 rounds of IMRT on the Pelvic area, and 3 rounds of SBRT on the Periaortic.
Waited 6 weeks and then did another Pet scan. No Uptake in Periaortic level at all. No uptake in Prostate, all but one of the Pelvic Lymph nodes showed no Uptake. The remaining single Lymph node with uptake showed 2.5 SUV, (standard uptake value) compared to 16.3 SUV at first Pet scan. The MO and RO both considered this great news and surmised the remaining Lymph node would have zero uptake in about another month.
PSA went to undetectable <0,04 at about the same time. That was about 4 months in.
1 year (in Oct)bloodwork showed PSA still undetectable and most Blood indictors normal. (I was a bit short on red blood cells and my Glucose was a bit high).
Any way based on the indicators all hasworked as planned.
Still on ADT, Lupron/Eligard and Abiraterone/Prednisone. Most likely a med change could come in another year or so.
Best luck and best wishes on your journey.
It sounds like you are doing really well. Please continue to stay that way. Your case is very similar to my husband’s. Take care!
Stephanie
103532- our situation is almost identical. A couple different issues. Id have had 39 Proton therapy treatments before it appeared in my lymph nodes 6 years later. Thought I was done with it all!
Did 25 additional IMRT this last year. Finished my Lupron/Apalutimide prescriptions in May. PSA undetectable and testosterone improving.
Stay in touch!!
Thank you so much!!!! I will stay in touch!
Wishing you all the best and that the IMRT wiped it off your plate!
My husband's prostate cancer spread to lymph nodes in his abdominal area all the way up to lymph nodes in his neck. You can see his history in my profile. He had an orchiectomy and is still taking abiraterone and prednisone. So far so good.
Thank you, and I pray he continues to stay “good” for years and years. I appreciate your sharing with me!
Stephanie
Thank you! You and my husband are on the same treatment path. I will follow you closely and share how my husband is doing. Thank you and stay undetectable!!!!’
Stephanie
I had two suspicious iliac LNs back in 2015. Had ALL pelvic LNs irradiated.No recurrence.
I know they never say cure with this, but it seems like you just may be. I hope so!
Stephanie
Well I’ve had bone Mets since then so I’m not cured. I was Gleason 9 so I never expected to be cured. Just trying to stay alive as long as possible. It’s now 11 years since diagnosis.
Had a single node in chest radiated
I was diagnosed with spread to the abdominal lymph nodes in 2015 following primary proton treatment to the prostate in 2012. Unfortunately in 2012 there were no good pet scans or psma scans that could show the spread at the time of initial treatment. Since that time I had an extended pelvic lymph node dissection performed in 2016, and about every 3 years when something shows up on a psma scan we eliminate it with very focal proton treatment. I have coupled that with intermittent hormone therapy. I am currently off all ADT as of August, my T has returned to 260 and rising and my current PSA is 0.05. Also exercise for times per week two and a half hours doing weights and some treadmill work. The resistance training really helps to minimize the effects of adt.
7 abdo lymph nodes discovered after RP and treated with Erleada and Lupron with no measurable T or PSA and while side effects are present, after 4 years still working full time, minimal discomfort in joints and really happy to be alive
You are so lucky! That is a scary amount of nodes in the abdomen, but the fact that you are doing fine gives me lots of hope! I do want to discuss Erleada with his MO in Nov. because so many people with lymph node positive use it effectively. Wondering if it has a better advantage over Zytiga. Stay well!
Stephanie
I had two lymph node Mets Dx’d decades after a Prostatectomy. Had SBRT to both; one week to each node, PSA WAS 1.14 at treatment (CT based radiation). 90 day follow-up PSA was reduced to 0.20. Six month PSA is now reduced to 0.12.
Hoping it continues to reduce, and no new Mets appear. Good luck to your Hubby!
Read my husband's bio, he just had the 6 month check, PSA 0.00. Only problem is hip osteoporosis, for which he continues to have Prolia shots.
So happy to read of all the encouraging responses!
I wish I could say the same for my hubby!
You can read in the bio our journey!
It’s been over 7 years and we have been able to keep it pushed back. Yet, PSA went up to 47… While rising his oncologist continued to insist upon PSMA scans. He has had 5 in 7 years! None of them showed anything! I finally insisted upon an Auxium scan… and a boatload of “c” lit up in the abdominal area lymph nodes….right up against his abdominal aorta!
He just finished a run of Docetaxel… and half way through his 6 treatments his PSA began to rise! On chemo it never got below 13!
We are now actually heading from Dallas to UCSF on Monday for more scans and hopefully SBRT … if in an area safe enough to radiate.
His “c” is HIGHLY aggressive with a monster CDK12 mutation!
As of last scan it had not spread into bones or any organs.
He is also on Lupron monthly injections!
He has had recent nodal biopsies sent to 4 different labs testing phenotypes etc. They all come back with the same results … CDK12 mutations.
We are really getting into the tall weeds now! It is so scary!
(He has had several different drugs) Zytiga, Nubequa, Firmagon etc etc.
CDK12 is pretty much treatment resistant!😩
thats really interesting that pet psma showed nothing at psa of 40s but the alternative scan type did.
(I read that regular pc can develop to Neuroendocrine after prolonged adt and it can be so low in psma expression it is invisible on psma pet scans)
That is true!
Just searching neuroendrocrine + CDK12 came up with this paper. It is on a case of lung cancer with CDK12 but there are a lot of familiar terms from PC, such as PARP inhibitor - and both drugs mentioned in the combo have had success for hormone resistant PC: ascopubs.org/doi/abs/10.120...
I have been following your husband’s journey on here. I know you are doing everything possible in the arsenal, and I pray you will find a way to tame this beast. Is the reason the cancer did not show up on PSMA scans due to this mutation? Your husband is going to the top of my prayer lists. Please keep me posted, and I will research for you too!
Stephanie
Some prostate cancers do not emit PSA … thus it doesn’t show up on a PSMA scan. This only happens in about 10% of cases. 😩
Let's pray SBRT can be done!!!
Thank you so much!!!!!! But God!🙏🏻
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