u/DAPatient

Hi everyone. I've posted a few times before but could really use some support and if there is anyone else in my situation, I'd especially love to hear from them.

tl;dr: I had duodenal cancer two years ago, was diagnosed with endometrial cancer last month, and just got a diagnosis for suspected thyroid cancer. WTF is happening with my body.

More details:

Two years ago in June I was diagnosed with a rare duodenal cancer. I had five rounds of neoadjuvant FOLFOX and then a Whipple, performed at the Mayo Clinic in Rochester in October 2024. I had the best possible recovery from a Whipple and have been NED since then and just shifted from scans every three months to scans every six months.

In March, I woke up one day with double vision. At the ER, I had a number of scans done and they flagged a nodule in my neck. I had ultrasounds and a biopsy done on that in June and the endocrinologist was not very concerned.

In June, I was diagnosed with endometrial cancer after having heavy menstrual bleeding. I am scheduled for a hysterectomy and BSO (ovaries & Fallopian tubes) at Mayo the day after tomorrow.

And I just got the results from my thyroid biopsy and it came back as "suspected malignancy." My endocrinologist is reaching out to Mayo to get a recommendation for a surgeon.

My head is spinning. I don't know what to think! It feels like everything is falling apart. Each of my cancers has good prognosis, but what about having all of them?? And two at the same time? (Or, worse: although all the doctors tell me that metastatis to my neck from either of my other cancers is unlikely, it could be true -- I guess we won't know for sure until the surgery to remove the neck mass??)

I have a 20 day trip to Japan scheduled exactly six weeks after my surgery (planned robotic/laproscopic total hysterectomy with BSO). My surgeon's nurse seemed to think it would be fine, but from everything I'm seeing here it seems like we should reschedule. What do you think?

Some context:

• I'm currently scheduled for a robotic/laproscopic hysterectomy, but it is of course possible that they will convert to an open abdominal surgery. (I had a previous Whipple surgery for duodenal cancer, so there's a good chance that scar tissue from the previous surgery will cause trouble).
• The trip is tied to an annual event, so if we reschedule it would be to next year. (I'm fine with this, just heading off recommendations that we wait another four weeks or whatever.)

Thanks!

My hysterectomy (robotic/laproscopic, total plus BSO; endometrial cancer) is scheduled for July 8 and I am trying to figure out when I should plan on going back to work.

I own a bookstore, so my job is lightly physical (not a sedentary desk job, but not super demanding). Although lifting heavy boxes is a normal part of the job, I can avoid that as needed. I control the schedule, which means that nobody (besides myself) will be pressuring me to go back to work.

So as I build the staff calendar for July, how long should I leave myself off the schedule entirely? At what point would it be reasonable to schedule myself for a full day? (Again, assuming I won't do any lifting until given the OK from my surgeon)?

I posted earlier about how to choose a doctor for my hysterectomy due to endometrial cancer.

I was able to get an appointment at the Mayo Clinic, but I'm nervous about the doctor they assigned me.

She is the most junior member of their team and, according the US News & World Report volume measures, she is at the very bottom of the scale (she's the only member of the Mayo Gyn Onc team that is below the state average in terms of number of hysterectomies performed).

All her public patient ratings (HealthGrades, etc.) are excellent.

Should I push to be assigned a different doctor? Or should I assume that anyone at Mayo is going to be excellent?

EDIT with new info:

Update and additional question! I have an appointment with Mayo next week, but it's not with the doctor I would have chosen (based on my googling).The doctor that I have been assigned is their most junior on the GYN ONC staff and is the only GYN ONC who on their staff who performs under the state average for number of hysterectomies performed in the last three years (using the US News & World Report "areas of expertise" methodology, which basically compares volume across doctors in the state: https://health.usnews.com/health-care/top-doctors/articles/doctor-finder-data-sources-and-methodology#areas-expertise).

Should I push for the doctor I was hoping for? Or just assume that I'm in good hands at Mayo with whoever.

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I was diagnosed with endometrial cancer yesterday after an incidental finding during an IUD placement. (Joke's on me, I guess I don't need that IUD after all.) A piece of tissue was expelled from my uterus during the attempted placement; they sent it to pathology; and boom, cancer.

I'm also a survivor of a separate rare cancer. When I got that diagnosis (two years ago), I went to the oncologist my GI doctor had recommended, and then got a second opinion at the Mayo Clinic. I ended up having surgery at Mayo. It was a very complicated surgery (Whipple) and I wanted to expertise they have -- Whipple outcomes are much, much better at high-volume centers and with experienced surgeons.

This time around, I'm not sure how to choose my team. Hysterectomies are common and (relatively) uncomplicated; do I need to worry about who my doctor is or which hospital my surgery is at?

• My OB/GYN office gave me a referral to the same cancer clinic where my existing oncologist practices, and I took the GYN oncologist with the first available appointment - should I just go with that doctor?
• A local magazine selects Top Doctors each year -- should I try to go to one of the GYN oncologists listed as a Top Doc?
• Should I choose based on the hospital where the surgery will be performed? (Based on US News & World Report ratings, or my own subjective experience with various local hospitals)
• Or should I just go back to Mayo (although the question remains how to choose from among their GYN oncologists)?

I was diagnosed with endometrial cancer yesterday after an incidental finding during an IUD placement. (Joke's on me, I guess I don't need that IUD after all.) A piece of tissue was expelled from my uterus during the attempted placement; they sent it to pathology; and boom, cancer.

I'm also a survivor of a separate rare cancer. When I got that diagnosis (two years ago), I went to the oncologist my GI doctor had recommended, and then got a second opinion at the Mayo Clinic. I ended up having surgery at Mayo. It was a very complicated surgery (Whipple) and I wanted to expertise they have -- Whipple outcomes are much, much better at high-volume centers and with experienced surgeons.

This time around, I'm not sure how to choose my team. Hysterectomies are common and (relatively) uncomplicated; do I need to worry about who my doctor is or which hospital my surgery is at?

• My OB/GYN office gave me a referral to the same cancer clinic where my existing oncologist practices, and I took the GYN oncologist with the first available appointment - should I just go with that doctor?
• A local magazine selects Top Doctors each year -- should I try to go to one of the GYN oncologists listed as a Top Doc?
• Should I choose based on the hospital where the surgery will be performed? (Based on US News & World Report ratings, or my own subjective experience with various local hospitals)
• Or should I just go back to Mayo (although the question remains how to choose from among their GYN oncologists)?

Today, almost exactly two years after being diagnosed with duodenal cancer, I learned that I now have endometrial cancer.

I feel almost dizzy. How is it possible that I have had two unrelated cancers at age 47? It just doesn't seem reasonable.

I've already done all the genetic testing (because my first cancer was rare, and because I was young) and I do not have Lynch Syndrome or any other worrisome genetic markers.

Obviously there is much that is yet to be determined. I have a referral to the GYN oncologist who practices with my original oncologist. I guess I'll have to have a hysterectomy, and they'll do the surgical staging then. I really, really, really hope that I don't have to do chemotherapy again.

I don't want to tell my father and sister. They are going to be so worried, and I don't want to do that to them. I know I will end up telling them, but I just don't want to, yet.

I'm on the hunt for a oncology psychologist. But in the meantime I could use some support here, please.