Mystery Illness Solved

Continued from my previous post…….

The pathologist said my tumor had the properties of Medullary Cancer and he would need to do a second biopsy to send off for confirmation and it would take a week or 10 days to get results.

We returned to Mexico and I waited and also researched. I found out that with a tumor the size of mine, over 4 centimeters, there was a 90% chance of metastasis and Medullary tends to go to the lungs and bones first. Now I was concerned.

After one week I called the pathologist’s office and was told they don’t give results over the phone or via email and to call the ordering physician, which was the ENT doctor. I called there and was told the doctor does not speak to patients on the phone. Wow! Even when he knows I am in Mexico and I have a serious cancer? I called pathology back and asked them to send the report to my family practice doctor. It was the same story with my family practitioner with a policy of not using email, no phone calls, but gatekeepers confirmed they had the report. You would think my health provider (now ex) would have the compassion to call me. My husband has a different doctor in the same clinic and they call him regularly with every test result. I called the ENT office repeatedly and finally was told I could set up a tele-health appointment with the doctor but he only schedules them on Saturdays. This was a Monday.

Most people don’t have anything nice to say about Facebook but I am ever so thankful that I had just joined them a few months before because a search led me to a very active Medullary group. Over and over, I read advice to new patients to go to an expert in Medullary cancer and there are only a handful in the US. Many patients didn’t have the surgery done correctly the first time and then the cancer spread and they had to have repeat surgeries. The University of Texas MD Anderson Cancer Center (MDA) was mentioned the most.

I called them and was connected to the Endocrinology Clinic. The same person that answered the phone took the information on where I had the biopsy and then set me up with a patient portal after confirming what insurance I had. Unbelievable. They hadn’t even seen me or confirmed the slides but accepted me as a patient.

In less than a week, MDA had the slides tested, confirmed Medullary Cancer and posted the pathologists’ report to my patient portal. No secrecy and paranoia with MDA! Then they scheduled me to have two days of tests with surgery on the third day for just two weeks later.

During those two weeks I read too much and was convinced cancer was wrapped around my trachea, esophagus, voice box, and whatever else is in that area because of all my voice and throat problems. Unfortunately, this IS a reality for many patients. I was certain it was the end for me and it’s very interesting what my thoughts were. The very first overwhelming worries were that I had so many partially used bottles of shampoo, conditioner, lotions and creams and what was Steve going to do with all my stuff. I combined bottles of shampoos, made myself use the emptiest ones first even if I didn’t like them, and I donated clothes to the non-profit ambulance company in town. Then I obsessed with how was Steve going to deal with the administrative side of living in Mexico. There is more involved than being in the US and it’s not easy.

We went to Houston in the RV (not recommended) and stayed in the RV park closest to the hospital (also not recommended). I took a taxi back and forth to the hospital and Steve couldn’t go with me because of Covid.

I had blood work, scans, and doctors appointments all day for two days. The schedule is grueling but there’s no time wasted going from appointment to appointment. My testing went until 9:30 pm the first day. When I met with the surgeons’s assistant at the end of the second day for the results, I was only half heartedly listening because of exhaustion and the assumption it would be all bad news. I can’t remember what she said, but I did a double take and asked her to repeat. She said the cancer was confined in my thyroid and it appeared there was no lymph node involvement. Double triple wow! You have no idea how relieved I felt to hear that.

Protocol for Medullary Thyroid Cancer is to remove both sides of the thyroid as well as lymph nodes. There is no deviation from that according to everything I read. However, 20% of patients who have the entire thyroid removed will have life long problems related to missing the hormones and no matter if the lab numbers are correct, will not feel right. Some have problems regulating calcium and must eat calcium pills all day long. So I was told, that given my age and that the cancer was contained, I could opt to only have half the thyroid out.

I also met with the surgeon, the endocrinologist and a resident and polled them for what they would do. The vote was 3-1 to only take half. The problem with that is they needed to know if I had the genetic version of Medullary which occurs in about 20-25% of patients. The genetic kind is more aggressive and the entire thyroid would have to come out. The surgeon was pretty sure mine was sporadic, but had to have an additional test to confirm it. It would take two weeks for results. Surgery was rescheduled for three weeks out and we returned to Mexico in the meantime.

The surgeon said I would probably be in the hospital three overnights, mostly due to drainage tubes. MDA owns a wonderful hotel connected to the hospital via a glass skybridge called The Rotary House. We made reservations for five nights.

MD Anderson view from Rotary House Hotel room

Everyone was wonderful pre and post surgery. As soon as I woke up, someone said they got it all! Two hours after surgery the surgeon visited me and said that I did so well I could leave immediately or stay a night. My choice. Of course, I opted to leave and within 30 minutes an aide wheeled me through the skybridge to Steve in the hotel. Someone I had gotten to know had surgery the day before by the same surgeon for the same cancer and was in the hospital 8 days. I was so lucky! My friends thought I did so well because of my clean living. Could be, but I do think meat and dairy is unhealthy for us.

I will be on a once a year schedule for followups at MDA if everything looks good when I return to Houston again next month. Then we finally will go Mazatlan again!