Jan 27, 2020 Latest post:
Feb 13, 2020
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My story started with a hysterectomy on December 4th, 2019. It was a scheduled procedure to relieve symptoms from fibroids. During that procedure, my uterus, fallopian tubes and right ovary were removed. The left ovary looked "healthy", so the surgeon decided to leave it in. On December 10th, my doctor called and said that the pathology tests came back showing a rare form of uterine cancer called Endometrial Stromal Sarcoma. My cancer is labeled Low Grade, which means it is slow growing and is hormone receptive. I was then referred to MN Oncology in Maplewood.
On December 26th, we had our first visit to oncology. We left feeling hopeful and were scheduled for surgery to remove the remaining ovary on January 8th, 2020. On December 27th, I had a CT scan. That scan showed two additional spots in my pelvis and suspicious lymph nodes near my heart. It was at that time, that we decided to go to Mayo for a second opinion on the treatment plan. Getting into Mayo was a bit tricky. The Oncology department need all of my records, including pathology and scans. They would then evaluate and determine if they would see me. It was a bit of an agonizing wait, but they eventually called me and said they would take me as a patient.
On January 13th, we had our first appointment. We saw the Oncologist and the Surgeon that would perform my surgery. We left there with a plan - surgery tentatively scheduled for February 6th, 2020. The surgeon would remove the ovary and the two additional masses on either side of my pelvis. It will be an open procedure (vertical cut to go with the horizontal one from the hysterectomy) and the surgeon will remove anything else that looks to be recurrent or metastatic disease. They will test the tumors while in the operating room, so we should have a good idea on long term treatment once we know what we are dealing with. If all of the tests come back as Low Grade, hormone therapy will likely be the plan. It is anti-estrogen medication that will likely be required for the rest of my life. It there is any High Grade sarcoma, radiation and/or chemo may be in the cards. The cool part is that the surgeon sent my case to tumor board, which is a cross functional group of doctors that review the case and treatment plan.
On January 20th, the surgeon called and said that the plan mostly remains that same, but recommended a biopsy of the lymph nodes near my heart. The Mayo radiologist also noticed something that was not seen by MN Oncology. There is "fill" in my internal iliac vein that extends to the common iliac vein. This "fill" could be a regular blood clot, tumor blood clot or the tumor growing inside the vein. That led to several more appointments over this last week.
On January 20th, we saw the Pulmonary Specialist to discuss the lymph nodes and the biopsy. On January 22nd, I had an ultrasound and a CT Scan to help determine if the "fill"in the vein is a clot or tumor. The results from the CT and Ultrasound still could not definitively tell the doctors if it's tumor or clot. On January 23rd, I had the lymph node biopsy procedure. They went in through my throat and grabbed some tissue samples. On January 24th, we met with the Vascular doctor to determine treatment for the clot/tumor. Since we don't know for sure what that "fill" is, he started me on blood thinners (lovenox). So, Jon is going to be giving me my shots twice per day up until surgery. It is likely I'll need to continue blood thinners after surgery for a period of time, but they will probably switch me to Eliquis at that time. We are still waiting on the lymph node biopsy results and should hear back on that on Monday, January 27th.
At this point, there are no additional appointments scheduled for next week, but I expect some will come up after I speak with the surgeon on Monday. The surgery will probably be moved to February 10th, so a Vascular Surgeon will be available to assist in removing that fill in the vein. That part may require reconstruction of the vein, depending on what they find and where it is.
This has all be extremely overwhelming, but I feel that I am in really good hands at Mayo. I have been super impressed with all of the doctors that we have come into contact with. And, I love that they consult with each other and take a team approach to treatment. Jon has been my rock. Brandon has been helping with the dogs while we have to make our way to Rochester for appointments.
I will continue to update as we get more info. Thanks to all of you for the prayers and positive vibes. Keep them coming!