It has been twenty years since my first bout with breast cancer. At the nineteen year mark, thinking I had a lifetime pass for paying my dues, I was shocked and freaked out by cancer’s recurrence, in the remaining breast. This time it wasn’t DCIS, where a bunch of microcalcifications were seen on a mammogram. In 2004, the oncologist spoke to his cronies at Memorial Sloan Kettering who told him that because I had had a mastectomy I didn’t need chemo or radiation. Philosophies change over the years. Had I had that “ductal carcinoma in situ,” now, I might have been advised to have some kind of treatment. I opted for that mastectomy because my doctor said she wouldn’t sleep at night if I didn’t. I opted for it because during all the biopsies she couldn’t get a clear margin. I went for it because I didn’t want to deal with radiation and chemo.

I went for it and was fine for nineteen years. I went for it and thought I was done.

And then, as you have read in previous related posts, activity began to happen and there I was again, now with papillomae, “benign” growths that can change. I had to have them removed over and over. I had to have biopsies during MRIs, during sonoscans. For a couple of years, while Robert was in the nursing home, I was beside myself. And as you know, had the last of the papilloma not been removed, they wouldn’t have found a small invasive  lobular carcinoma. My life changed again and again.

After the mastectomy and reconstruction, the post-surgery pathology report found even more invasive cancer.

Invasive. A word that scares the shit out of me. Invasive, BUT, my lymph nodes were clear and because it was caught so quickly, there was no danger. No imminent danger. I was put on a drug that blocks either the production of estrogen or the absorption of estrogen. Now I have to see the oncologist every three months. She tells me each time that my bones are going the way of osteoporosis (the anti-estrogen pill makes it worse) and that I will need one of those infusions that are supposed to build bone. And each time I say, “no.” There are too many possible side effects.

Life is simple but complicated. There are so many issues and worries that I wish I weren’t thinking about. The estrogen inhibitor brings possibility of recurrence down to 4% I think from 12%. The whole idea is to lessen the possibility that a rogue breast cancer cell may have gotten loose and is surveying other possible homes to latch on to.

Then there is the visit to the surgeon every six months. And, there is also the visit to a sonogram specialist who now goes over BOTH breasts and looks for any possible mass on the chest wall.

When I went the first time (I rely on my dear friends to take me and offer moral support), I was reunited with the first radiologist and technician I had nineteen years ago. However, at this place, it was strange that with my insurance a fee was charged. I mean, I have Medicare and a supplemental and never had an issue before. I figured, OK I’ll pay for peace of mind. When I called to make the next appointment, the fee had gone up. Strange. I called Medicare and was told that shouldn’t be. I had heard that Medicare was no longer going to pay for these follow-up sonograms because there is no longer any breast tissue. Someone else said that it had to do with the bill coding. All I know is this: Fee or no fee, The doctor spoke with me after the sonogram. I was so overcome by a “probably benign” report, I didn’t have the strength to get off the table. I was weeping.

Medicare recommended a place close to my home instead of this women’s center miles away.

I opened up a can of worms. They weren’t as adept as the previous place. They wanted all of my records. They said they would get them and didn’t. They weren’t even sure until the last minute of a long wait that they would even see me. My surgeon had told me that I was starting over from square one, that the history wasn’t necessary, I was in a new situation. Double mastectomy.

I explained this over and over to the new place near my house. “I don’t have breast tissue, this is not a regular sonogram.”

The sonogram was performed professionally. Unlike the other places the doctor/radiologist didn’t come in to talk to me. I didn’t get the report on the patient portal until a few days later. It said I had all kinds of “lesions.” They recommended an MRI. I refused. No one spoke to my doctor, communication was poor and in addition, I left messages for my doctors and no one returned my calls.

Here’s the thing: if you have a reconstruction, the fat to create a new breast can still have cysts, can die, (fat necrosis) and there can be hard as a rock areas. It takes years sometimes to soften.

Eventually I got a report, like the one I had brought in from the first place, of a “probably benign” diagnosis. These familiar words remind me that this is a cover-your-ass wording in the medical profession. My oncologist told me to go back to that  place where they now have a record to make a comparison. interestingly, I never was asked for money or received a bill. I have no idea whether women in my situation are now covered for this procedure again.

Let’s look at the graphic on top of this page. It displays six signs of breast cancer. I had breast cancer twice. I never had any of these symptoms. That is why it is important to follow the protocol, go for your tests and do what you can to stay healthy.

One thing I learned about the lobular invasive carcinoma: it doesn’t form a lump as a pile-up of cells can. This one is a sneaky devil; it is web-like and flat and can evade a mammogram.

I thank the Universe: cancer would not have been found had I not had a “benign condition” which necessitated a prophylactic procedure to remove the papilloma. I guess I am damn lucky. Again.

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