Almost 16 years ago I was diagnosed with breast cancer. That year, 1995, was a very difficult one for our family; my wonderful Mother-in-Law passed away in January, and my diagnosis came on St. Patrick’s Day the same year. She was my “rock”; always positive; always praying for our family; I wished that SHE had been my mother rather than my mother-in-law. And I wished she was there to pray for me.
My bout with breast cancer was, to say the least, very unnerving.
I was working for San Diego Job Corps at the time, and my health insurance coverage was with Mercy HMO. I learned about my diagnosis from a letter my PCP sent to me that stated that “there is an abnormality on your mammogram and we think it may be cancerous. Please make an appointment to see me as your earliest convenience.” At my earliest convenience? How about today? Now? And why did I have to hear about this in a letter? Why couldn’t the doctor call me and tell me that there might be a problem? Or how about having his nurse call and ask me to make an appointment to see him?
While meeting with him, a week after receiving the letter, he made sounds that I could not interpret. It ended up with him telling me that he couldn’t feel anything – yeah, isn’t that the truth – and I needed to see a surgeon that he recommended from the same “Medical Group.”
Since the female surgeon he recommended graduated from Pt. Loma High School the same year as my daughter, I felt akin to her and made my appointment. (How stupid was that?) She confirmed what the mammogram had shown – she must have had a better “feel” that the PCP – and said I needed a biopsy.
So I had the biopsy only to find out that the surgeon did not get all of the margins and that more surgery was in the offing. In talking to her she told me that I should have a double mastectomy because “ . . . although there was no sign of cancer in the second breast, there was a 50% (!) chance that I would get it later down the road.” (I have since found out that her percentage was way off.)
I called my insurance company – Health Net – and asked for a second opinion. They told me that I could go anywhere in the Mercy system for a second opinion. I told them I didn’t want to go to the Mercy people because I did not think that I could get an honest opinion from a colleague of the surgeon. They in fact said, “tough shit.”
My husband called different places to see where I could go for that 2nd opinion and he landed at the “Sloan Kettering Foundation” in New York. They told him that the cancer foundation at UCLA was the best on the west coast and suggested I go there.
I called back Health Net for permission to go there and they turned me down. I decided to go anyway because I had trouble believing the Mercy physician and I wanted an outside second opinion. I paid for the opinion out of my own pocket.
After bringing all my information to UCLA, they said that, at best, I should have a lumpectomy on the cancerous breast and forget any treatment on the other breast. They said I did not need a mastectomy at all.
I went back to Health Net, armed with this new information and said that I wanted a third opinion. Again they refused. So…pen in hand I wrote to the Insurance Commissioner for the State of California, and, lo and behold, permission was given by Health Net to obtain a third opinion, which, by the way, they paid for.
I chose Scripps for that third opinion, and the doctors there agreed with the UCLA diagnosis. Back to Health Net where they told me that Mercy could do what UCLA and Scripps suggested. I again threatened with the Insurance Commissioner and I was granted permission to have the surgery at Scripps with Health Net paying the bill.
So….15 years ago I learned that one has to advocate for one self because the “system” does not have rules that are easily broken. Fifteen years ago I found that medicine is still just “practice” and what one physician believes is not necessarily the belief of others physicians in the same kind of practice.
Why this article now? Because three weeks ago Buddy, my Golden Retriever and I were sleeping in the same room and he woke up with one side of his face completely swollen. He could barely open his eye. I woke up with severe itching at the incision site of the lumpectomy. Were we bitten by something? A spider? A hungry mosquito?
I immediately took Buddy to the vet, who after performing $1000 worth of tests on him, was not sure if the swelling was caused by an insect or if he had an abscessed tooth. This appointment took place the same day that I noticed the swelling. Buddy was given dental x-rays and placed on antibiotics immediately.
I called my own PCP and although she sent in a request for a mammogram that same day, I had to wait 2 weeks before I could get in to have it done. Anyone that has had breast cancer surgery knows that any little twinge allows the mind to recreate that cancer. Even if there is an explanation for the twinge, we are sure that the cancer is back.
In the meantime, Buddy’s swelling went down, only to return after he had finished the course of antibiotics. When I took him back to the vet the same day the swelling restarted, the decision was made that it probably was an infected tooth and should be removed as soon as possible. Even though the cost would be another $400, Buddy is my “baby” and it had to be done. (It was, and it WAS an abscess.) Meanwhile, I was still waiting for my mammogram. Yes, the itching has stopped, but what caused it in the first place?
Finally, the Wednesday before Thanksgiving, I had my appointment. The tech took 4 pictures – as is the protocol – and then said she wanted to compare it to the last time I had a mammogram in 2009. Then she returned and said that she wanted to take one more. Why? “Well”, she said, “it looks like they took 5 last time so I better take an extra one too.” Any amount of questioning I did always came up with the same answer: “I am only the tech; the doctor will have to read the mammogram”. She told me that I would receive a letter from the department telling me the results within 10 days. Another “freaking” letter!
So here I sit; worried to death that the itch was cancer-caused; worried to death that after all these years the cancer may have returned. I’m considerably older now; a widow; maybe my life expectancy is 10-15 years more without cancer. The mind is such a creative being. The scenario’s that I have come up with are living nightmares. To have surgery; not to have surgery, etc. Let’s see – Wednesday was the mammogram; Thursday was Thanksgiving; Friday the office is closed because of the Thursday holiday; Saturday and Sunday are non-working days; Monday would be the first possible day that the radiologist could look at the results. Maybe Tuesday. Then he has to write up the results; Hmmm. It might be close to the middle of December before I receive my letter.
Patience has never been my long suit. Creative thinking has been a force for years. I think in my next life I want come back as a dog living in a house just like mine. I wonder – do Vet’s do mammograms?
Editor: We just received this from Judi:
The letter’s here,
It’s on the table
I’ll get to open it
When I’m able.
The message in it
Could be bad,
The message in it
Could be sad.
The message in it
Could be fine,
The message in it
Could give me time.
I guess I’ll open it
It’s almost nine
Man, I hope it is
I unsealed the flap
Am ready to read
I’m so scared
I nearly peed.
You won’t believe
What it had to say,
Hip, Hip, Hooray,
I am OK!