In 2009, I was diagnosed with, treated for, and recovered from breast cancer and then returned to work – all in the month of June. The story had some surprising twists and turns, which I have written about elsewhere, including the depression that arrived unexpectedly in the months after as I struggled to catch up and to process emotionally with what had happened to me physically. I have also written about the distance it created between J and I – he felt pushed out and guilty for not being here with me, and I was turned too far inward to even notice at first. I addressed the issues – and the bigger issues that cropped up later – to the best of my ability, and got on with my life.
After the first two 6 month mammograms came back clear, I was moved to the regular once yearly schedule, and I relaxed. With scheduling issues caused both by my schedule and the need to have an appointment while the radiologist is actually present, my first yearly mammogram came in November. Unfortunately, my expected in and out in twenty minutes turned into a need for more films, followed by a sonogram, followed by another sonogram conducted by the actual radiologist reading the films, who informed me that I had a large area of dense breast tissue in the area of the resection, that it and the changes he could see from my films six months ago might be scar tissue and a slightly different angle of image, but he couldn’t tell for sure and that I must come back in six months for followup imaging.
OK, so the reason the surgeon was originally so insistent that I had to have immediate surgery was that a phyllodes tumor can actually go from 1.5 cm to 5 cm in weeks – and if the wide margin for a 1.5 cm tumor is 6 cm x 7 cm x 2.7 cm, imagine how much tissue is removed for a larger tumor…and if it was in fact a recurrence, how large could even a small tumor get in 6 MONTHS??? At that point, the radiologist suggested a followup with my surgeon. I started looking at new journal articles and realized that recurrence rates were much higher than I realized, and that while metastasis rates are almost non-existent for an original tumor, they are much higher for recurring ones…and remember that radiation and chemo don’t work, even if the tumor shows up in some other part of the body…and some body parts can’t just be removed!
In doing his own research, my husband realized that the histology grade of the tumor makes a difference in the rates of recurrence and metastasis, so he wanted to know the histology grade, and I had no idea – I had never asked. So, working hard not to freak, I opted to first visit with my regular physician before asking for a referral to my surgeon. He provided me with copies of my pathology reports and updated journal information, and said he would call me when he had reviewed all of the information. After I got home and actually looked at the reports, I realized that the histology grades, which are benign, borderline, or malignant, not some set of detailed scientific jargon, were nowhere on the reports – and every journal article indicated that it was a significant part of the picture. I called the next day, and left a message asking that he also call back with the histology grade since I couldn’t sort it out. When he called back, he did not have an answer or a referral to the surgeon, but instead a referral to an oncologist, since he could not determine the histology grade either and felt that the best course would be to have an expert take a look at all of the information since I had never been seen by an oncologist. OK, now I was definitely working to stay out of freak out mode.
That appointment was today, and the short version from the oncologist is that I was incredibly lucky to have been diagnosed when the original tumor was so tiny, that my surgeon actually exceeded the required level of care – increasing my safety margin without really changing my breast, and that the radiologist was extremely overcautious. He said that I do need to have the recommended mammogram in 6 months, but that my “wimpy” former tumor was really a tumor of the connective tissue located in the breast, rather than “real” breast cancer, and that I actually have a greater risk of developing “real” breast cancer than a recurrence of the tumor I have already had – in other words, the same risk as every other woman. Again, I have been extremely lucky. My mammogram was November 29, and somehow both my doctor and the oncologist had cancellations that allowed me to get this entire mess over in 2 weeks!!
So – I am now going to have a bubble bath and a large glass of wine, and then spend the next few weeks enjoying my life!