Diagnosed with Leiomyosarcoma of the prostate

@sjd4901, as you likely already know, leiomyosarcoma is a rare type of cancer that begins in smooth muscle tissue. Smooth muscle tissue is found in many areas of the body, such as the digestive system, urinary system, blood vessels and uterus. It sounds like your diagnosis was first discovered in the prostate.

You might also be interested in joining this discussion:
- Leiomyosarcoma: What can I expect now?
https://connect.mayoclinic.org/discussion/leiomyosarcoma-1/
What treatment plan has been suggested for leiomyosarcoma in your situation, SJD? Will you or have you had surgery?

I assume your diagnosis came from pre-treatment biopsy or biopsy after surgical removal. Unfortunately, I know more about Leiomyosarcoma than I care to. My sister lost her three year battle with it. Upon diagnosis I hope you were referred to an Oncologist ASAP. Preferably a soft tissue sarcoma specialist. I'm sure you were told Leiomyosarcoma in the prostate is not prostate cancer (commonly Adenocarcinoma). Have you had lung/liver scans for metastasis? Common prostate cancer is usually slow growing, what you were diagnosed with is more aggressive and should be treated ASAP. I wish you well.

Thank you so much for your comments. I was diagnosed following surgery. I’ve had a whole body PET scan that did not find any sign of cancer except in the prostate. I saw an oncologist just a few days after the diagnosis and they referred me to a different oncologist who specializes in sarcoma. I’m pushing for surgery asap. Thanks again so much for your comments.

Just a short update on the process to respond to my diagnosis. I was initially diagnosed following a TURP. I’ve been seen by three doctors at Mayo in Rochester, one surgeon, one who is part of the sarcoma team, and an oncologist who does radiation treatment. The surgeon explained that the cancer was found in the transition area between the prostate and the bladder. I had a second TURP one month after the first which found residual cancer by the bladder. There was no cancer in the bladder muscle. There is a concern that my initial TURP may have caused the cancer to spread into the bloodstream. One option was to wait three months and do more scans to see if cancer was found anywhere else, The recommendation from the sarcoma tumor board is for surgery to remove both the prostate and the bladder. It’s scheduled for eight weeks after the second TURP.

Sounds like you have a good team in your corner. Wishing the best for you!

@sjd4901, with the removal of the bladder, what ostomy or reconstruction options are being suggested? There are several related discussions I can direct you to if you'd like to connect with others who have had a cystectomy.

Thanks.

The surgeon and other doctors have done a good job of explaining an ostomy option and reconstruction.
My wife and I have decided an ostomy is the best option.

Thanks again.

Update. I had very successful surgery in April to remove the prostate and bladder. The ostomy is working fine and is an improvement in quality of life. Scans and biopsies at the time of surgery showed no evidence of cancer. Back for follow up scans and labs in a few days.