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Advanced Metastatic PC-Cervical Lymph Node

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Posted 5/30/2019 9:23 PM (GMT 0)
Hello All,

It has been a long time since I have posted so please forgive me. You all were such a tremendous help to me when my husband was initially dx in 2017. When Mike was dx, he responded very well to the 1st line of treatment (as you can see below in my signature). We did what everyone recommended, which was enjoy every moment together as a family (we have 2 little guys now 8 and 10). Mike has been receiving great care with Dr. Jorge Garcia with the Cleveland Clinic Taussig Center. What brings me to the group today is something I haven't run across and I think I have a feeling what you all would do in my shoes. Mike has numerous mets to bones and lymph nodes, when he was dx it was due to a swollen lymph node in the left side of his neck. At the time of his diagnosis there were some neuroendocrine markers present (chromogranin and synaptophysin) but very few in comparison to the prostate cancer cells. He felt a lymph node on the side of his neck swell a little when we went for his check-up in February but the CNP was not concerned and his numbers were stable. Now the lymph node on the side of his neck is very swollen (visibly the size of a golf ball) his PSA doubled since last appointment and his Alk Phos went from normal 87 to 135H. We decided it was time for scans and biopsy of the lymph node. Scans (Bone and CT came back normal). MO spoke with hubby today on the phone and explained this is great news. He told my hubby he doesn't feel that we need to change our current tx plan and that a biopsy of the lymph node may be tricky and may not be necessary at this point in time. He stated that the smaller lymph nodes grew together into one larger node (in my husbands words). I am waiting to look over the results of the scans myself. I feel that the lymph node should be biopsied but would love to hear what others think. Dr explained the increase in Alk Phos may be related to the liver but his liver enzymes were normal. I am so paranoid that the CT missed something with his liver. I don't want to devastate him while he is enjoying this great news but something isn't sitting well with me. I know too many stories of men on tx for extended periods that have their cancer develop into neuroendocrine/small cell, I believe current studies show about 20-30% of men. I hate where my head is, but this disease does that to you! Sorry for the long post and I truly hope you all are doing well.

Nikki
Posted 5/30/2019 10:29 PM (GMT 0)
Nikki,

Thanks for the update. We certainly wish you and your husband well. It looks like things are being managed by the PSA level, but I share your concern about the enlarged lymph node. However, I certainly don’t have any advice as to what to do.

I do encourage you to connect with another of our friends that has faced equally daunting challenges. Todd1963 was dx at age 42 with 3216 PSA and mets throughout his body, bone and lung. That was about 13 years ago and today he is on his first treatment holiday. My wife and I visit with him and his wife often and I believe he could be a great person to connect with. Please let me know if I can assist you getting together with him.

Best wishes,

Jack
Posted 5/31/2019 12:16 AM (GMT 0)
He could try a PSMA PET Scan, which is more accurate for locating prostate cancer within the body compared with CT or Bone scans.
Posted 5/31/2019 12:24 AM (GMT 0)
I agree with you regarding the lymph node. To have a group of swollen lymph nodes grow together to be the size of a golf ball, is, simply put, not normal. How do they know it’s not another cancer, unrelated to PC.

With that said, I’m not a doctor, so you should talk to the MO about this. And depending on your confidence level if the MO , maybe getva secind opinion.
I truly hope the MO is correct, and that Mikes PC remains in check.
Posted 5/31/2019 1:41 AM (GMT 0)
Hi, Are you doing all this work at the Cleveland Clinic or locally?
Posted 5/31/2019 9:25 AM (GMT 0)
Jack-I read Todd’s blog. He is a true inspiration to us all and gives much hope to those of us in the stage 4 game.

Weightloss-that’s a good idea. Thank you!

Prato-you are echoing my thoughts. I had a chance to look over the results after I posted yesterday. The CT scan states that it is a conglomerate of necrotic metastatic lymph nodes. Still need to speak with the MO about it but maybe a biopsy is not so urgent. The mass is rather large and is bothersome to Mike. Still have to think this through and determine best course of action. Thank you for your reply.

Mumbo-all of this work is being done at the Cleveland Clinic. We are fortunate to live close by.
Posted 5/31/2019 11:57 AM (GMT 0)
Thanks, hard to argue with Cleveland Clinic. However, my experience has been that specialty doctors generally like informed patients who ask well thought out questions since most just sit there and listen to their practiced speeches. I have got a lot of “good question” comments and good answers as I have probed the issues based on my ever increasing knowledge of PCa since diagnosis.

If something is driving you crazy such as the lymph mass, just stay after it with them. They will eventually come up with some more ideas to consider.
Posted 5/31/2019 1:22 PM (GMT 0)
Nikki,

Glad that you have followed Todd. Anytime you need to talk with him, just reach out as he is very giving.

So, as I read about the "conglomerate of necrotic metastatic lymph nodes" I learn that this basically means the cancer has metastasized in that area and overtaken several lymph nodes causing them to die. So the nodes haven't grown together, rather the cancer has displaced and killed them, as I understand. I'm not trying to do the doctors' job, as I am not a doctor, just trying to help you with more information to help you formulate your questions and research.

I could not find information specific to PCa, but there were numerous articles and studies regarding this condition caused by other cancers. Many of the articles reported benefits by removing and/or reducing the mass. As a lay person, I would think that direct treatment on the lump either by excision or radiation would be of consideration both for your husband's comfort as well as debulking the cancer Though it wouldn't cure, it could remove or at least mitigate another source of potential metastasis. And as the mass continues to enlarge it may present issues other than just discomfort or being unsightly.

It is good to see that he has responded well to the treatment so far as his PSA has been very low. However the recent increase could indicate increased tumor mass expressing more PSA.

Going forward, have the doctors discussed introducing Provenge into the treatment plan? Has he been tested for the genetic biomarker that might indicate Keytruda as a potential treatment? I sense that you want to get out in front of this, as I would. I would be researching these and discussing with the doctors.
Posted 6/1/2019 12:40 AM (GMT 0)
Mumbo-I agree 100%.

Jack- Mike has had genomic testing done through Tempus. There was no family history and given his young age and disease progression we wanted to know everything we could. All treatments have been discussed, including immunotherapy. Mike carries the BRCA2 gene so the PARB inhibitor Lynparza has been matched as a treatment option as well. I just need to speak with the MO to figure this all out. We need to understand the best course of action with the lymph node? Why has his Alk Phos increased? What’s our plan with the increased PSA? Zytiga has been mentioned as the possible next step. I would want Mike to have the AR-V7 blood test to determine effectiveness. So much to think about...

Thank you both for your thoughtful responses. They mean more than you know!

Nikki

An interesting article about BRCA2 which explains a lot with Mike.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6067857/
Posted 6/1/2019 12:46 AM (GMT 0)
I forgot to mention that Mike is negative for PD-L1 expression which may take Keytruda off the table. 🙁
Posted 6/1/2019 5:33 PM (GMT 0)

Bird8 said...
At the time of his diagnosis there were some neuroendocrine markers present (chromogranin and synaptophysin) but very few in comparison to the prostate cancer cells. He felt a lymph node on the side of his neck swell a little when we went for his check-up in February but the CNP was not concerned and his numbers were stable. Now the lymph node on the side of his neck is very swollen (visibly the size of a golf ball) his PSA doubled since last appointment and his Alk Phos went from normal 87 to 135H.


Nikki - a couple things jumped out at me so I'm just going to throw them out here without composition or reinforcement. I know very little about NET PCa, but I did have a crash course in neuroendocrine cancer this past fall when a mass very suspicious of GEP-NET was found on a CT. Be aware that it is possible to have two cancers. You and your husband have been preoccupied with the PCa, and as serious as that is, I'm wondering if his care team has considered the possibility of something other than metastases from his PCa.

CgA can appear elevated from other causes (mine was 506, normal is around 30) and both NHL or lymphoma as well as neuroendocrine cancer cannot be ruled out without a primary tissue sample. We live Tampa and both my wife and I simultaneously went thru "oncology wars" wherein certain specialists did not want other specialists (endocrinologists and hematologists) trespassing on their territory, treating their patient. For us it was neurologists and gastroenterologists who wanted to call the shots.

Just wondering how "diverse" your treatment team is? If it were something out of their realm, would they know how to look for it?
Posted 6/2/2019 2:11 AM (GMT 0)
RobLee- I have been concerned about this from the time he was diagnosed. His Current MO was concerned as well when the lymph node enlarged with an increase in PSA and ALK Phos which is why scans were ordered. The problem is the scans did not reveal much that would indicate another cancer. The lymph node in his neck needs further evaluation. I will be speaking with the MO this week. Thank you for your great insight.
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