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beautybldr (@beautybldr)

HER2- and ER/PR+

Breast Cancer | Last Active: Jan 30 7:36am | Replies (69)

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I was lucky in that my former PCP's practice was still a mess last year, fewer doctors and near-zero support staff, so I called a major medical facility (Cleveland Clinic) and had a new PCP within a day. As bad luck would have it, a routine mammogram 10 days later found a small tumor. I had biopsies and surgery within 2 weeks.

Had I waited for some future appointment with my former PCP, and then weeks to have mammo and ultrasound, at least another week[s] for a biopsy…then referrals to surgeon's and oncologists, I once calculated that the surgery would have taken at least three more months to get done. I never again want medical care parceled out over multiple independent medical practices. At places like Mayo and CC, once one is a patient, i.e., in the system, I feel that there's an institutional commitment to one's care that never would have occurred to me until I was in real trouble.

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When I found out I had breast cancer, I wanted to know my plan and get immediate surgery/care. I was diagnosed at the end of August and did not get my treatment plan until the first of October. I had PET scans, CT scans, MRI, Mammoprint testing, a tumor biopsy, and lymph node biopsy. Then a node on my clavicle that showed up in one test wasn’t apparent on another. They did more tests to find out for sure. It seemed like a long time filled with extreme anxiety.

When I got my ‘cancer plan’ in October, it was for six months of aromatase inhibitors to see if my tumor and lymph nodes would shrink for a better outcome with surgery. I was not happy. But all my doctors stressed it was the best plan, so I went with it. I said I would do what was best, but May, June, and July were busy and sacred to me, and I didn’t want to jeopardize them. Well… the joke was on me. I had a partial lumpectomy and lymph node dissection on May 6. I followed with 28 regular radiation treatments with 5 boosts. I just finished those on July 22. Today I started taking Verzenio that has a new set of side effects. This was NOT the course I wanted!!!

However, my tumor and lymph nodes shrank by a third with the AIs before surgery, my surgery was 8 hours and had good margins and outcome, my oncologist has been my biggest cheerleader, and the radiation therapist and doctor were the most wonderful people I know. I drove 45 minutes each way to get to my treatments and they were painful and extremely fatiguing. But, they made the unbearable into a ‘good’ situation.

I learned that I can’t always have things my way. I feel like there were so many stumbling blocks between what I wanted and what was decided was best for me. Even though it was exactly not what I wanted and definitely wasn’t quick enough for me, it did end up being the best. I’m the person that wants immediate results and that was NOT the plan. I found I really had to step back and let the professionals decide what was best. It was a long process (almost a total year) but the worst is behind me.

Hang in there and have faith in the professionals. I’m glad you started on medication while you are waiting for surgery. I’ve learned so much from my journey but the main one is to have faith and be patient. Good luck!