Just curious, have anyone on this forum been diagnosed with regional lymph node involvement without the presence of organ/bone mets? I had 28 lymph nodes removed at the time of my RP. At least 8 of them contained cancer. My bone scans are clear and I'm getting a PET scan on 2/20 to see if there are any distant lymph nodes or organs involved. If the PET scan doesn't show distant mets, then I wonder what my chances of a "cure" are? From what I've read, it seems that regional lymph node involvement without bone and/or organ mets is unusual and rare.
Lymph Node-Positive?: Just curious... - Advanced Prostate...
Lymph Node-Positive?
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I had mets to Left ureter lymph nodes with a 65-gram Median lobe on the prostate - no other mets. So far, so good
Dale with change in treatments shifting to more aggressive approaches involving combination therapies focusing on systemic treatments combined with metastasis targeted treatments anything is possible. There have been men with lymph and bone mets that are in a durable remission or possibly cured. It was barely 2 years ago the term cured or durable remission with stage IV prostate cancer was never used and now there are cases where it has and is happening.
One of the biggest issues that I have experienced myself, read here and seen in other places is the failure of doctors to practice current methods of aggressive treatment. I cannot stress it enough that SEEING A SPECIALIST IN THIS DISEASE IS ABSOLUTELY ESSENTIAL. A man needs a doctor that is researching and genuinely involved in the science and biology of this disease. A doctor who is willing to work outside of the standard format of care and authoring pubmed papers as to why. There are far too many men with a general oncologist or urologist only practicing what they learned in med school 7 years ago. I think there is a huge problem where far to many men are not getting the care they should.
We are all different and none of us will respond to treatment the same. Some of it is timing of treatment, the order of when it was applied and some of it is genetics. There are a lot of details in the factors involved. You know my story which applies to the question you ask. My initial diagnosis was not good but through a lot of determination and God's will I have managed to stay ahead of this thing and I'm not ever going to use the term cured. I will count my blessings for putting this thing back to bed and remain hopeful it stays sleeping for years to come.
Ron
in reply to Dayatatime
Thank you, Ron. I saw a radiology oncologist today and he scoffed at me for having my prostate removed. He said all of the studies showing survival benefits for removing the prostate once it has spread were hogwash. He refused to offer me chemo, stating it wasn't standard care. He offered 2 years of hormone therapy along with radiation to the prostate bed. He told me my chances of a cure were less than 20% but he could extend my life by several years. He said it was like kicking a can down the road. If I had 5 years, then 2 years of hormone therapy would delay the start of that 5 year period by a couple of years. That is exactly the kind of doctor people need to avoid; someone so entrenched in western medicine and the "standard" methods of treatment that they cease to think and reason. Anyone can follow a recipe or a set of instructions, but I want a doctor that is going to treat ME, not my disease. One thing I have learned in a very short time of research is that the treatment for this disease is not a one-size-fits-all treatment. It needs to be tailored to the individual and the results can vary greatly from person to person.
Dayatatime in reply to
Dale I had the same thing happen to me when I started exploring the possibility of surgery after my local docs gave me the exact same speech. I went for another opinion to a robotic surgeon in Roswell Park in Buffalo who has a reputation for being at the top of his game. He barely gave me the time of day and made it very clear I was wasting his time. I left there feeling very disheartened. I almost gave up as that was doctor number 4 telling me HT until the day I die. I then did more research and found the unbelievable things they were doing with Stage IV at The Mayo, bought a plane ticket and went there. There was no turning back.
If your thinking cure the cancer cells in your bloodstream, lymphatic avenues and hiding elsewhere must be taken care of. Chemo is the standard now upfront and finding a doctor to work with you shouldn't be that difficult. There are some major league hospitals that many on here can recommend. As far as research hospitals I have only been to The Mayo and it is an outstanding treatment facility.
Never give up and make it happen,
Ron
Hi, Ron,
Glad to hear you are doing so well with your PCa treatments. Out of curiosity, which Mayo facility to you use? I’ve been gong to the Mayo in Jax, FL since June, 2015. My medical oncologist there is Dr. Winston Tan. He is really good, as his his PA, and puts up with my endless questions about my cancer and treatment plan, and allowing me to have a say in my treatment plan, including adding chemo while I’m still hormone sensitive and asymptotic. I have a lot of confidence in them. So far, I am very satisfied with both Dr. Tan, and the Mayo in general.
Best wishes to you! Hope you continue to have many years of success in keeping the cancer in check. Keep the faith.
Mark
The Mayo in Rochester MN and my surgeon is Dr. Jeffery Karnes. I responded very well to early chemo and it cleaned up a lot of cancer before surgery. Thanks for the support and keep up the good fight. Sounds like your doing great and have an awesome support team.
Ron
in reply to Dayatatime
Mayo Clinic is awesome. Sadly, they won’t see stage IV cancer patients, if you are currently on anti-hormone drugs. So, my advice to anyone who finds thrselves in this situation, get to Mayo before you start Lupron, Casodex, etc. we are going to Johns Hopkins, who agrees to see patients, like my husband.
Dayatatime in reply to
I was currently on HT and already went through chemo treatments before contacting The Mayo Clinic. I was stage IV and had a lot of disease in my nodes. I went with the Urology Department because of Dr. Kwons's work and I wanted surgery. Kwon generally only takes on the biochemical recurrence cases and ended up with Dr. Karnes who is a well versed doctor for the treatment I needed. Did you contact Urology or Oncology?
in reply to Dayatatime
Mayo has great Doctors. Dr.Singh in Scottsdale now was my dr at U of A in Tucson until he upgraded to mayo Mow I can’t se him because I’m on Medicare . So I’m floating without funds or a specialist .Im ok presently so I m conquering up a plan to go forward.
in reply to
Get rid of that dude. If we stay with the radiation oncologist currently seeing my husband, my husband will be dead in 2 years. We fired him.
in reply to
Definitely not going back.
in reply to
That really helps to scoff a done deal. .Unfortunately I ve had a Dr say jack ass remarks to my wife and I also. I will challenge you here just a bit. I didn’t have mine removed so I’m hoping selfishly that that part of his story if true is good for me. You can’t redo prostatectomy so that’s a moot point now. I’ve only done adt & Rt .Things are clear for now so this approach is working for me and should work for you also. Unless you’re rich we have limited resources and do our best to navagate the system. He is right in saying kick the can down the road. We re kickin it for life. Hope it goes good from here for you.
in reply to
Thanks. Ultimately, if you can keep it, that's what you want to do. Sounds like you made a good decision and if your cancer stays in remission then you will be better off for not having it removed. I thought long and hard about it. There's a place in Atlanta that boasts a 90+% cure rate on prostate cancer and they measure cures at 15 years with undetectable PSA. They put 128 radioactive seeds in the prostate and then radiate it from the outside too. Since mine was aggressive and had escaped, I just opted for a more aggressive treatment. Good luck and God bless.
in reply to
dale339, I started off on the rough side of APC near death in hospital w/kidney failure. I’m lucky to be here at all . In fact every good day is gravy on my plate .. In my case the prostate was completely blown out with pc tumors blocking urethra pelvis bladder and only 2lymph nodes lit up. They gave me 50/50 chance to survive initial treatments involving the dreaded neauphrostemy tubes. It does none of us any good to second think forgone treatments now .. It was never even an option in my case to get prostatectomy . The horse was outta the barn. I was told. The same goes for orchiectomy, permanent decisions that can’t be reversed.I don’t care if you’ Bill Gates , prostate cancer once you’ve gone aggressive metastatic is terminal . Only by personally witnessing or being a patient of APC can we truely know the cruelty of this beast that feeds on our manhood ! Thank you & God bless you!
in reply to
I think I am going to refuse to believe it is terminal until I'm actually dying. There are cancer vaccines in trials at Mayo and Stanford now where they are using viruses along with immune activating agents to wake up the body's immune system to attack cancer cells. These are showing GREAT promise. I'm talking about results where metastatic cancer is halted in more than 80% of the patients. This method of using the body's immune system is so promising because along with healthy diet and exercise, we are looking at a treatment without all of the negative side effects of chemo and hormone therapy.
in reply to Dayatatime
Ron, just reread your story. Very inspiring. If nothing happens, I will get a PET scan on 2/20. If there are no distant mets (bones, organs, or lymph nodes) I will feel much better. Your initial diagnosis was much like mine. Hope I get similar results. Maybe I shouldn't use the "cure" word. Maybe I'll use "permanent remission" instead. 🙂
Dayatatime in reply to
No harm in using the word cure, it is what we are striving for. The term durable remission seems to fit better with this disease. Your results of post surgery PSA and scans will explain better where you are at. Don't waste any time finding an Oncologist who's a specialist to work with you on a plan. Even if it means traveling. It's your life and worth the plane ticket.
in reply to Dayatatime
Amen. We are leaving our home, here in St. Louis. The doctor who has been following my husband, since 2006, though he is ffiliated with a NCI hospital, is years behind in treatments. Every doctor has their own personal agendas and it’s not always your health. As a newly retired RN, with 40 years of experience working side by side with doctors of every specialty, I speak with authority, we leave for Johns Hopkins next week.
in reply to
I have appt at Johns Hopkins at the end of March. Good luck to you and your husband.
in reply to
You know then it not just PC doctors ..Its western meds approach in general to not look at the whole patient. A lot you must do for yourself. You are aware and should do well.
in reply to Dayatatime
I’m with ya ! A long siesta for that C.S. Would be nice. ....
I had lymph node involvement but not in the bones to other organs. We were agressive in my treatment. Started Lupron two months after surgery (should of stated sooner). Then four months after surgery, when I regained some but not total bladder control, I had 38 rounds of radiation starting When the results from the Stampede/Latitude trials were published last year (16 months after surgery) they added Zytiga (and prednisone).
I have a rare form of prostate cancer, Ductal, which is hard to treat and does not always raise your PSA. It is so rare that they do not know the best way to treat it. As a result I get scans about two to three times a year. So far I am doing fine.
I would treat yours as if you can be totally cured and be aggressive.
Walt (a chemist not a medical doctor)
in reply to Dr_WHO
Btw, Walt, I'm glad you are doing fine. I think the best form of encouragement anyone can have is hearing from other people that are doing okay. It fosters hope. Thanks. 🙂
in reply to
Amen!
Thank you Walt. That is exactly what I want to do. I see Dr. Amato in Houston on 2/21. I'm getting a PET scan on 2/20. Hopefully will have good news and an aggressive plan of attack. I also still have appointment with Dr. Pienta in Baltimore on 3/26. I know what Dr. Pienta's treatment plan will be. After I hear Dr. Amato I will decide.
in reply to
Dr. pienta is amazing. Top of his game. We are praying that we get to see him.
in reply to
Dale, glad to hear that you have hooked up with Dr A. Be sure and discuss micro-metastasis. The metastatic cells that use the vascular and lymphatic systems to move throughout your body looking for a place to land and grow. With nodal involvement then I would think the buggers are in your vascular system as well. The problem is that you can't see them until they grow.
I remember the day that he told me that it mattered not what my primary treatment was, it was too late; mets were inevitable. In my case within a year of primary treatment. You are in good hands.
GD
Dr_WHO in reply to
I was told the same. One of my Lymph nodes was “100%” Cancer. I was told that cancer does not just target one area are and not move on until that area is totally taken over. Rather cancer spreads using whatever means it can as fast and as far as it can. It just means that you have to be on top if it and go for agressive treatments.
in reply to Dr_WHO
True, yet I have read stories of people who have have cancer in regional lymph nodes, who had those nodes removed during their surgery, and have maintained undetectable PSAs since. I'll find out Tuesday when I get my scan what I'm dealing with. Just praying there are not mets now.
Dr_WHO in reply to
Yes, you are correct. I did not mean to be negative, just that we must be on guard. That is why they treated mine aggressively. My objective is to be here long enough that new treatments come out that will finally end prostate cancer.
Hoping good news for you.
in reply to Dr_WHO
Thank you. Amazing things going on at Stanford and Mayo with cancer vaccines that use a virus with immune activating agents to stimulate the body's immune system to recognize cancer cells and fight the disease. Mayo is using the polio virus. Not sure what Stanford is using. Results so far, from what I've read, have been much more than just "encouraging".
in reply to
Yes, vascular invasion was noted on my pathology report.
Dale,
I live in Sydney Australia and had a radical at age 57 in 2003 - PSA 6 and Gleason 8.
PSA did not drop and CT and bone scans were clean.
Went on to Lupron which controlled it for many years.
Lupron and variants were failing by 2013.
PSA romped up to 69 by June 2014.
Started clinical trial then where everybody got Enzalutamide in the first stage.
CT scan then showed sizeable metastasis in my right pelvic lymph node - rest of CT scan and bone scan clean.
PSA rapidly dropped and has been puddling along at about 1 for the last two years plus - I am considered to be a good responder to enzalutamide on the clinical trial.
By coincidence had some kidney stone problems in about June 2014 and again recently. CT scans were done for that and urologist informed me metastasis now about 10% of the size it was in 2014. Once again rest of latest CT scan was clean.
Appreciate CT scans are pretty rough and ready and there may well be more microscopic stuff around.
Also I am on metformin for type 2 diabetes since before 2014 - recent research indicates this may boost the performance of enzalutamide.
Anyway hanging in there with the enza - when and if it fails will have to choose between different drugs, radiation or even more surgery.
Now 72 and may yet make it to 80.
Tony Maxwell
Tony I too am 72. Have an 8 yr old nephew who is a maths genius. Has calculated from my father's family (gran made 99.5, great aunt 107 and great uncle 101) that I will make 88. Had to promise him that and oddly my subconscious tells me I will ! On 7th year stage 4 0.03 for 2 years. Have as much chance of 88 as England had of beating Oz at rugby 3x in Oz. Good luck.
in reply to tonymax
That is awesome, Tony. I hope you make it to 90 and beyond. 🙂
Hi
My husband had RP on oct 2017. The path report showed 4/21 lyph node posititive which wasnt seen on the ga68-psma scan done before the surgery. 3 month post surgery psa is 0.02
The dr told us just to wait right now i dont know if because the psa is too low or maybe his liver enzymes alt and ast are above normal range.
in reply to Kamilekamile
Three month post-op PSA of .02 is good! I would at least pursue radiating the prostate bed as a backup measure to mop up any stray PCa cells
Dale,
Distant sacral LN metastasis was identified via 68Ga-PSMA scan 12 years post-op RP. I had them robotically removed. No other organs showed metastasis. You can pull up my history on this site if you are interested.
My best, Ron
in reply to E2-Guy
Thanks, Ron. I will definitely look up your history.
Hi Dale 339
I also had a similar diagnosis like you. You didn't mention your Gleason score and initial psa. Mine was 9 and 70 respectively. I had only lymph node metastases, no bone mets. My disease was termed as aggressive high risk prostate cancer. I had not done lymphectamy as you had done. Only left iliac lymph node was affected. I had pelvic radiation for the nodes as well as prostate gland. I was on ADT for 18 months and then it became castration resistant. Recent pet scan showed mets on para aortic lymph nodes also. Recently I underwent a nother radiation for this nodal area. I am continuing ADT and aberaterone (zytiga) is also added to my treatment.
In 2010 I had an enlarged iliac lymph node with positive biopsy. A few months later I had an L3 positive bone scan. PSA was 12 and five cycle of chemo dropped All that and PSA to undetectable. Fast forward to now and I am at or near CRPC with rising PSA. On to the next plan. Looking at Xtandi, apalutamide study, or perhaps Lutetium-177. So far, two Axumin PET scans had been useless. Didn’t show anything significant.
Lymph node only disease is a bit of an orphan. All the time we were told that because of the location surgery and radiation were impossible. Chemo was offered, but my husband was still working and refused it due to chemo brain fog fears. ADT in its various forms got us this far. The treatments have evolved so much since my dad died of this disease. Try to find a local doctor willing to work with a big clinic like Mayo or NIH to oversee non-standard treatments. The hitch comes when the insurance companies refuse to cooperate. We've been fighting them for 9 years. Chemo is better earlier on the journey - when the body can better withstand it and the tumor burden is smaller. Paired with second-line ADT, it is even better at stopping the progression. Have the genetic testing done to find out if there is a treatment that works on your cancer. It is definitely worth it to avoid useless treatment.
Best wishes for success on your new journey
My lymph nodes lite up like a Christmas tree in the ct scan with contrast, after the chemo the glands didn’t show up. That’s probably not a answer that helps but that was my experience 😀😀
I also had lymph node involvement but no other bone or organ mets, I did have positive margins. Thirty lymph nodes were removed during RP and 8 came back positive. I'm not sure that this is so unusual, as it simply suggests the timing of the diagnosis (caught before it advanced farther). My uro was willing to do the RP, followed up by radiation and constant ADT. I was 50 at time of diagnosis and in good health so we agreed upon an aggressive plan. I was told flat out that there is no "cure" available but palliative treatments only for those of us where the cancer escaped the prostate capsule. However, terminology is changing as new treatments are being offered so I think we all hope that we can hold on long enough to see a "cure" or at least long term remission. My MO's attitude is to proceed with treatments one at a time, getting as much time out of each treatment as possible and NOT to introduce higher level of toxicities into my body until absolutely necessary. So all of the new theories of stacking treatments and pulling treatments in earlier don't really fit into his belief of the best approach. I ask a lot of questions and challenge him on this but he has convinced me. For the sake of argument, let's say that a cure comes about next September, by some kind of miracle. If that were to happen, and I haven't undergone any chemo yet, his theory would make sense. Right now, the Lupron alone has failed after 1 year, so I added bicalutamide (Casodex) about 6 months ago and so far it's working. My PSA dropped from 1.83 to 0.56. I'll ride Casodex as long as possible.
in reply to cfrees1
Unfortunately, there is no one-size-fits-all treatment for this disease, but it sounds like your plan is working! I hope the Casodex remission lasts for many years.!
My husband had a RP in 2003, with no lymph node involvement. Cancer came back in 2006. He had 48 radiation treatments. PSA stayed very low until 2015 when it started to slowly rise. Took a fast turn in 2017. December 5, he had a CAT scan which showed positive lymph node in regional iliac node. His radiation oncologist wanted to give more radiation to the area. We are going to Johns Hopkins for a PSMA Pet Scan and for their expert advice. Bone scan negative.
in reply to
Sounds like it might be coming from the regional lymph nodes. You may be able to remove them or radiate them and be done with it. I certainly hope so.
The body text cannot be blank.
Good Luck and Good Health.
j-o-h-n Wednesday 02/14/2018 2:09 PM EST
Valentines day (kisses for the Misses and fist bumps for the guys)
I had ten removed at RP all negative. Two years later after PSA rose following SRT to prostate bed, an MRI found two suspicious iliac nodes. I had ALL pelvic nodes but with IMRT at 75 grays. No recurrence in soft tissue or nodes since but a femur met was found last year which I hit with SBRT and I went back on on ADT3.
I’m Gleason 9 stage pt3b, which is high risk so I don’t expect a cure. Just beating it back as it pops up. Not sure what your prognosis is /was but I’m sure you know your risk.
Bob
in reply to Break60
Hey Bob. I too am Gleason 9 stage pt3B. I have 28 nodes removed during RP, 8 of which had cancer. Seminal vesicle invasion, perineural nerve invasion, positive margins at bladder neck too. PSA prior to surgery was 23.4. I get my 4-week post-op PSA checked next week. Fortunately, my bone scan was clear. I will be getting PET scan on 2/20. I'm praying nothing shows (no organs, bones or other lymph nodes). I'm not expecting a cure either, but I'm hoping for one as I plan to hit this as aggressively as possible. Good luck to you!
Break60 in reply to
Dale
You’re very early in the process. Your pathology is very similar to mine but a little worse due to multiple positive margins and cancerous nodes at RP. All I can say is read up on the latest standards of treatment. For high risk guys early SRT is necessary as well as long term ADT. You have to throw everything at it because it’s very aggressive particularly once it has escaped into SV and nodes. I consider myself lucky to have had only a few mets and no recurrence after radiation in the same location. If you want to talk to one of the best ROs call Dr Dattoli in Sarasota who only treats prostate cancer. He’ll give you a free one hour phone consult.
Bob
in reply to Break60
Thanks, Bob.
I had my rp on January 25. Gleason 9 psa27. Came back with 5/17 lymph nodes positive. Seminal vesicles invasion and bladder neck margin. Going on Lupron this week followed by radiation in 3 months. Wondering if I should ride this treatment for awhile or go another route. Any thoughts?
in reply to Dad1963
Your case sounds a lot like mine! I'm 55 years old. My RP was on 1/26. Gleason 9. PSA 24. Eight of 28 nodes positive. Seminal vesicles and perineural nerve invasion. Bladder neck positive. I would add chemo to the mix if I were you and if your doc won't do it then find one who will.
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