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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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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?
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3 ReactionsGood 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.
Chris
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