Rare Prostate Cancer

Posted by librarygirl @librarygirl, Sep 15 1:06am

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.

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

Good evening @librarygirl. I am pleased to see you here on Connect. My heart almost stopped beating as I read your story of your husband's situation. In 2017 I was in a similar position when my life partner's biopsy revealed the presence of prostate cancer. We submitted the most current lab and medical data to Mayo in Rochester. Some of the information was within 24 hours new. He was accepted immediately and the remaining scans or other diagnostic tests were completed at Mayo Clinic. Treatment began and surgery was scheduled. Unfortunately, there were some margin issues and he had to go back for 30 days of radiation. After completing the radiation he was told to make sure to have future biopsies or even a colonoscopy nowhere else but Mayo and he was closely monitored.

You can even apply for admission online and receive prompt attention. That is what I did for my own medical situation and the response was also within hours. We barely had time to put some clothes in a suitcase in order to head to Rochester. Do you live near any of the Mayo campuses…..Minnesota, Florida or Arizona? I am going to make sure that our Connect Director (@colleenyoung gets a copy of this response so that she is aware of the urgency of your situation.

Hang on, take a deep breath. We are here for you both.

May you be safe, protected, and free from inner and outer harm.


Hi @librarygirl, so much information and not enough information at the same time. No wondering you're overwhelmed and searching for answers and guidance on what to do.

Like @artscaping, I would also recommend getting a second opinion at Mayo Clinic or a comprehensive cancer center that has familiarity with rare forms of prostate cancer. Here's how you can request a consult at Mayo Clinic by filling out simple form. http://mayocl.in/1mtmR63

Fellow members like @legendts @jenatsky @budisnothome @dmadi61 @dmadi61 @dandl48 @bodeygolfer, may have further thoughts for you too.

Librarygirl, I know it feels like time is not on your side, but it is usually better to get a clear diagnosis in order to get the treatment plan that is most effective for the type of cancer. Through testing, experts will know what they are dealing with.

How are doing today? Has your husband's doctor suggested a second opinion?


@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:


I 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.


I 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



@librarygirl, how are you and your husband doing?

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