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Rare Prostate Cancer
Just received the dreaded news today that my husband has a rare form of aggressive prostate cancer with "unusual spread". Our current doctor (not Mayo Clinic) said this is the first time he has ever seen this and has consulted with colleagues who have only seen it twice. It has spread to his lymph nodes (doctor says the lymph nodes are "very enlarged") and there is substantial swelling in his abdomen, which is supposedly what makes this so rare. They are recommending a new scan ($65,000 without insurance) to get a better understanding of what is going on, but waiting for insurance clearance which will delay starting treatment at least one week. They said we can't start treatment until after the scan because hormone shots may impact the scan results. PSA number has went from 20 to 40 to 60 very quickly.
A few lingering questions -- do we try to get a referral to Mayo or somewhere else since our current doctor and his colleagues have limited to no experience with this rare form of prostate cancer? Do we forego the scan and immediately start hormone treatment? We know time is of the essence, but are unclear exactly what that means. Has anyone else experienced this or are we the only ones?
I understand this is a discussion forum and nothing should precede doctor recommendations and ultimately our family will need to make these decisions. Just looking for advice or recommendations from those who have been there.
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Can’t get a pet scan because I am inpatient for a different reason
I’m going through the same thing right now with Indianapolis specialists
Thanks for the positive report. It gives me some hope for remission and a break from the treatment side effects. It's a new year and new treatments are coming. B+
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1 ReactionMy husband's prostate cancer has gone to his lymph nodes also. He has had all his treatment at the Mayo clinic in MN. See if you can get into see Dr. Kwon. He is amazing and has seen this type of spread. My husband had chemo treatment and is now cancer free. We go back in Feb. for follow up.
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1 Reaction@librarygirl, oh that's a lot to bear and so quickly. You must feel breathless to continually keep up physically and emotionally with all the developments.
There is a discussion about Firmagon and bone metastasis here that may interest you:
- Stage 4 prostate Cancer: Firmagon + Abiraterone? https://connect.mayoclinic.org/discussion/stage-4-prostate-cancer-metastasis-to-bones/
@rso is also dealing with a nephrostomy:
- How long did you have a Nephrostomy? https://connect.mayoclinic.org/discussion/nephrostomy/
Library Girl, I hope you and your husband are able to snatch brief moments to just take a deep breath.
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1 ReactionA lot has happened since the original post. Stage 4 Prostate Cancer that has metastasized to the lymph nodes and bones. Lymph nodes are swollen all over and put pressure on the kidneys, which ultimately caused acute kidney failure shortly after my original post and led us to a nephrostomy on both left and right kidney. Right side is up and running again, but the left side has no output and is giving us concern. We started Firmagon and are getting ready for chemo (taxotere) later this week. So much has happened so quickly that we have not received a second opinion.
Does this story resonate with anyone? Recommendations on where to go from here?
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3 Reactions@librarygirl, how are you and your husband doing?
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1 ReactionI would agree with the other members on this forum, consider going to a NCCN designated institution, generally there you will find not just doctors but researchers, multi-disciplinary teams that include not just the urologist, oncologist and radiologist but others such as a cardiologist, dietitian...
I went to Mayo in Rochester when surgery and SRT failed and my PSADT an PSAV indicated an aggressive PCa, saw Dr. Kwon who at the time was advocating triplet when others were stuck in the SOC, monotherapy therapy. Suffice to say, four years later after my last treatment, NED.
As to the question of foregoing the scan given his PSADT and PSAV, the question to think about is will the results change the treatment plan? If not, then the answer may be no, if yes, then maybe wait. So, if the treatment plan calla for triplet therapy, say ADT, Zytiga and chemotherapy, knowing where the PCA is does not necessarily change the treatment plan. Still, useful to have that piece of the clinical data, where is the PCa - prostate, PLNs, bones, organs...?''
Also, not sure about their statement that hormone treatment may alter the scan results in one week. If it's Lupron, there is a flare associated with it, if it's Orgovyx , maybe, since it is faster to suppress T than others such as Lupron, but over 8 years since diagnosis and participation in various forums such as this, I don't recall seeing members post about dramatic drops in their PSA a week after their first ADT. Then again, I'm a layman, not a trained, educated and licensed medical person so just my thoughts based on my experience
Kevin
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4 ReactionsI currently have high PSA and waiting on results of my biopsy.
As I wait I am reflecting on my life. Even now I have had an active, fun life. As I consider possible treatments and side effects I am thinking how my life will change, and reminded of a quote I heard somewhere: Life is like a play...it is not the length that matters but the quality of the actors.
I have decided that quality is more important than quantity. Be open to all possible approaches.
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3 Reactions@librarygirl. My brother had prostate cancer. He is in California and I had to plead with him to go to a comprehensive cancer center. He had a choice of two and he chose Stanford University. While his cancer was not the rare or aggressive type that you mentioned - which is certainly frightening for both you and your husband - I know he breathed a sigh of relief once he was at Stanford where he has received excellent care. He also needed radiation therapy and has been on medication since early 2020.
Let us here at Connect hold your hand, virtually, and we will support you and your husband through this.
Yes, I encourage you to get that second opinion. If you want to contact Mayo Clinic, here is the link:
http://mayocl.in/1mtmR63
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