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It was the fall of 1992 and my wife, Anne, and I were getting ready to celebrate Thanksgiving dinner. My sister in-law, travelling from the Midwest with all her children, was coming for dinner and an extended stay. Shortly after her arrival, however, the nurse in her came to the surface. She stared at Anne’s face and then blurted, “You’ve got to get that mark on your face checked out. It looks like it could be a melanoma.” This wasn’t the first time that this mark had been brought to Anne’s attention. A few months earlier, I had expressed a similar concern – but she just replied then, “Don’t be concerned. I think it’s just an age mark. And anyway, it’s so small.” However, there must have been something about my sister-in-law’s tone that resonated with Anne.
A couple of days after Thanksgiving, Anne made an appointment with a dermatologist at our HMO. The dermatologist didn’t think the mark looked suspicious, and since it was on her face, the doctor expressed concern that removing it would leave a noticeable scar. But this time, Anne insisted that it be removed and examined. Within a week, the dermatologist called her to come back to the office. The growth was indeed melanoma, a deadly form of skin cancer, and her margins were not clear. So, a broader, wider, and deeper incision was made this time. Finally, the margins tested clear – but now Anne was a melanoma “patient.” It could reoccur at any time.
We now began our hunt for someone who could monitor Anne and help us catch any other emerging signs of disease. Since we live near the medical hallmark of Boston, MA, we learned about the Pigmented Lesion Clinic at Mass General Hospital. So Anne then began annual skin-checks at the MGH.
The Bad News
It was a Friday evening in late August of 1996 and I was getting ready to host my poker game. As the guys started to arrive, Anne escaped to the second floor for a little private time, and she decided to take a shower before going to bed. It was then that she found it – a lump protruding from her right breast, about the size of a smallish grape. There was no mistaking what she found - and she was engulfed with fear. She didn’t want to disturb the poker game – so she dressed for the night. After a couple of hours, the game was over and it was time for me to turn in. When I entered the bedroom I was surprised to see that Anne was still wide awake. “Luis,” she said, “Feel this and tell me what you think it is.” There was no mistaking this hard mass as an unwanted intruder into our lives.
The next day, Saturday, Anne put in a call to our HMO. No, there was no one who could see her on the weekend – but they scheduled an appointment for her to be seen by her primary care physician Monday morning. On Monday morning, her primary care doc asked her if she were menstruating. “No,” she replied, “Why do you ask?” He said that he felt the lump was just a normal part of her menstrual cycle. Anne just shook her head. “Look,” she said, “I’ve been menstruating month after month for more than 25 years – and I’ve never had a lump pop out of my breast. I want this lump biopsied.” So, her primary care provider sent her to a specialist in Providence, RI. This doctor then tried to draw fluid out of the lump – as he thought it was a liquid-filled cyst. But the needle couldn’t penetrate the growth. Anne and I both knew what that meant. This lump was a rock-solid hard mass. So she went back to her primary care and once again she asked for the lump to be excised. This time, however, her primary care became uncooperative. “Look,” he said, “There’s nothing wrong with you. I’m not going to authorize any biopsy or excision or anything else. You’re making a big deal out of nothing.” But she was adamant, “This IS something – and I’m going to find out what it is. If you don’t want to help, so be it. But I’m going to find a doctor or a hospital or something that will take this seriously!” “Go right ahead,” he said. “But I’m not going to authorize any visits or surgeries or anything at all. I hope you’re prepared to pay big time for chasing down this wildcard!” Anne walked out of his office, and shaking like a leaf.
We then decided that she should be seen at Dana Farber Cancer Institute (DFCI) in Boston. Anne picked up the phone and called the main number of the DFCI and spoke with an operator. Anne told the operator that she didn’t know any of the doctors there, but that she had a lump that she wanted to be examined and biopsied. The operator was calming and reassuring. “Sure,” she said, “We can have you seen by one of our breast cancer specialists, and she can see you within the next 48 hours.” Anne and I were ecstatic. Finally – someone was going to pay attention!
At DFCI, the breast cancer specialist, Dr. D, tried to excise fluid from the growth – but she too found it to be a hard mass. So she decided to remove the lump right then and there. “I’ll get back to you in a couple of days - it'll take a little while for the analysis to be completed.” A couple of days turned into a week – and then into a week-and-a-half. Finally Dr. D's office called. Anne was told to come to Boston right away – and not to come alone. Dr. D’s office requested that Anne bring a “close, personal support person with her.”
Dr. D sat us down. She apologized for not getting back to us sooner. “I didn’t believe the results when they came back. And I didn’t believe them again when they came back the second time – and then the third time. Finally, though, the lab made a believer out of me. Mrs. L, I am so sorry. The lump is not breast cancer – it’s melanoma. It has metastasized from some primary source to your breast – and it’s probably in other locations too.” We were shell-shocked. Anne was immediately sent for CT scans to see if the cancer had spread to any other location. It had. It was also in her left lung. At this point, Dr. D told us that she would arrange for us to meet with melanoma specialists that day to help us figure out what to do next.
Shortly that afternoon, we met with the doctor who headed up melanoma research at the DFCI at that time. As soon as he walked into the room, Anne asked, “What stage is my disease?” Dr. M told us that her cancer was Stage IV – and then, looking back and forth between Anne and me, he said, “Mrs. L, you need to go home and put your affairs in order. You have a year at most.” But we both almost blurted out at the same time, but what about treatment options – what can we do to make this different? He said that at that time there were no medications or treatments to successfully cure melanoma that was at Stage IV. Chemotherapy could be a choice, but it was a poor one, in his opinion. Anne and I persisted. There must be something that could be done - besides getting affairs in order. Suddenly, Dr. M's eyes brightened, and he remembered a melanoma research study that might hold promise. It was a study of the application of Interleukin-12 – and most important, they had room for one more patient in the trial. He told us, “The tumor in your lung can be used to monitor the progress of the Interleukin on your disease.” He then quickly introduced us to the study’s director, Dr. G. Dr. G confirmed that Anne would be a good candidate for the treatment. Finally, one of the longest days in our lives was drawing to a close. We were both resolved to deal with this as best we could – we would not leave any stone unturned.
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