I am engulfed, embroiled in a universal experience and want to write about some of the events and the overwhelming feelings that become involved.
Ten days ago I went to a dermatologist about a lesion on my arm. It had been there a long time and had at times been scaly, but then in the last couple months, it had developed some projections in its profile and the edges had become rolled. I knew the latter was characteristic of basal cell carcinoma of the skin which is a cancer, but a low grade one which does not usually spread elsewhere but can destroy normal tissue locally. There was no pigment in this lesion; it was a reddish pink. I knew it needed checking and probably removal. I went in and even the dermatologist was fooled. She thought also possibly a basal cell or a squamous cell carcinoma or lichen planus. She did not suspect melanoma and she did a shave biopsy. That is a no-no if you are considering melanoma because this interferes with the calculation of a depth of the lesion, information which is important in planning how to proceed with treatment. Well, surprising all of us, on Wednesday, 3 days ago I got the call from the dermatologist that she had bad news which she apologized for but I had a malignant amelanotic (without melanin pigment) melanoma. So now it is Wednesday night and we are due to depart on a 3 1/2 week trip on Monday -- 5 days later. The path report says the biopsy specimen had cancer clear down to the base of the biopsy and to the edge of the lesion in several places. So I still had the cancer on my arm. The dermatologist had told me that a new portion of the pathological report rates the mitotic rate of the tumor ie the number of cell divisions per mm squared. If less than 1 it is a lower risk lesion; if greater than 1 it is a higher risk lesion and very new changes to the classification of melanoma takes that into consideration also in determining who might need a further diagnostic test ie the sentinel node biopsy. My mitotic rate was greater than 1. So now I have an inadequately removed cancer still on my arm which has some high risk characteristics. Now what? A list of questions began to run through my head and my husbands. Should we cancel our trip that had been planned for 8 months? Is it safe to travel with this cancer still on my arm and to further delay definitive treatment. Should I push for a sentinel node dissection? Should we do something to try to establish the depth of the lesion by a small re biopsy or should I have the wide excision of the lesion done before we go on the trip. Which doctor should I see?
I began calling everyone I could find to try to begin to answer these questions. Two of the surgeons that I have worked closely with as a colleague over the years were out of town at conferences. Another third surgeon who is a close friend was not available by phone. My own internist is out on medical leave. I tried to get ahold of a plastic surgeon in town who trained with my surgeon son to see what he could tell me. He was supposed to call me back. And I was trying to get ahold of my son of course but they were not answering their phones because they were busy putting the kids to bed at this time of night. Finally when I couldn't get ahold of anyone I called the clinic to find out which surgeon was on call. It was Dr. Brooks. He was very thoughtful and when I explained the situation with the inadequate biopsy and our upcoming trip, the first thing he said was; "Well, I can see you tomorrow and we can talk about the pathology and we can try to redo the biopsy to try to get a Breslow depth with the second try. I can give you a suture removal kit and you can take the stitches out yourself on your trip." At this point it sounded like a plan. But he did not know about the mitotic rate being used as an indication for a sentinel node biopsy, a fact that the dermatologist had said was entirely new. He said there was always vascilation back and forth, whether Breslow 0.75 or 1 mm should be the cutoff and it always just comes back to the 1 mm as the cut off. If your depth is 1 mm or more you need the further surgery so we would try to reestablish the Breslow depth with a further excision or punch biopsy at the site. That was the plan.
But by the next morning I had heard from Don, from Dr. Pele*, the oncologist I had seen in the past for a polyclonal gammopathy which is a benign condition, and most importantly from Dr. Whit* and his partner at his plastic surgery office who does only melanoma surgery. Dr. D was very nice and after I explained the situation to his nurse, she got a message to him and he called me back directly. He said we would never restablish a Breslow level and this unknown in and of itself was an indication for a sentinel node biopsy. Now I felt like I had a plan and some options. I went to see Dr. Brooks in the afternoon, but after some discussion we decided not to do any further excision of the biopsy. I had sort of decided to go with the surgery. He had researched the situation and now realized that the mitotic rate is now used in the risk assessment as of new guidelines about 2 months old and therefore I probably should have the sentinel node biopsy.
But jDr. Brooks had found another issue. He even as a surgeon had heard a new heart murmur that I didn't know I had. Where did that come from? I wasn't really worried about it but the surgeon and my internist would probably want an echocardiogram done before the surgery. And now my husband was throwing a fit and maintaining that he was not going to take a wife with a new heart condition to Europe with him. He was almost yelling at my cardiologist friend I was talking with to do the stress echo immediately. How was I going to get that test done within the next day when my internist was out on medical leave and as I learned through another phone call the echo technician at the clinic was out on Friday due to her own minor surgical procedure. So I began throwing my MD after my name around again, calling other clinics and hospitals in the area. I finally found a 10:15 appointment at CSM Ozaukee Hospital. But now I needed an order. So I called my old roommate from when I was working who is on the staff at that hospital and he called in the order. So now I was off to get the echo. I had spoken with my friend and cardiologist who wanted to do a stress echo since I should have the stress part because I am diabetic, but he strongly maintained that this could all wait until I had returned and even til after all the surgical management of the melanoma. But I knew my internist and my surgeon would need the echo so I still worked to get it.
My cardiologist friend read the results and called me in the afternoon with the non-serious results. "No one every listens to me," he whined. "I wanted to do the stress echo so we would have both the echocardiogram results and a stress at the same time."
" I know," I said, "but you would have had to write up a consult saying I could wait for the echo and you haven't even seen me in person. My hands were tied so I got the echo. But you're wrong, I did listen to you." My diagnosis was tricuspid valve regurgitation and a slight elevation of the pressure on the right side of heheart. Nothing needs to be done about this, though I don't know why this has developed now. Anyway the echo is done and checked off my list.
I slept on and off those two nights, actually getting maybe 6 hours each night but the first thing you think about when you wake up is this diagnosis and what it might mean. I vascillated between complete confidence and optomism and panic and assumption of the worst. This must be almost universal feelings in everyone who has received this diagnosis. My husband says he went through the same thing when he got his diagnosis of prostate cancer. He is telling me that these obsessions finally subside though they never completely go away. I did have times when I was feeling more spiritual than usual, trying to live each moment and feeling a great gratitude for this gift of life and vowing to myself to maintain that gratitude at this high level.
On Friday, two days after receiving the diagnosis, I saw Dr D, the melanoma plastic surgeon. He was very nice and was very complete with me. He certainly had little pieces of information that no one else had given me. He told me that he was going to proceed as though I didn't have any medical knowledge so he used his audiovisual chart to explain the pathology. Indeed I didn't know that my cancer was a Level IV tumor, having extended beneath the basement membrane and he said that in and of itself was an indication for a sentinel node. I was surprised about the smaller size of his planned incisions and yet he was going to more widely excise the lesion than Dr. Brooksarad planned. He does the axillary node resection through a 1 inch incision. I changed my mind. I decided to go with him. He does this type of surgery all the time. He has a surgical suite for giving the radioactive injection and for the patient to wait for this magic stuff to do its job to identify the sentinel or "gateway" node that is removed to look for the cancer. He quoted studies to me and one of them was that the prognosis was no different for those patients like myself whose tumor had been cut through by a shave biopsy or other type of inadequate biopsy. That was good news to hear. So I left there with my surgery scheduled for June 2nd when we get back. When I got home I called the nurse for my internist who was working in the WIC even though my internist was not there. She said they had put me in for a preop exam on Friday May 28 at 11 am and the receptionist had been supposed to let me know this. So that was set up. I would get the chest xray and EKG either Thursday when we returned or Friday morning as well as the fasting blood work. I think I was finally scheduled up with everything.
I had to let Dr. Brooks know that I was going with plastic surgeons for this operation. I felt bad that he had been so helpful but now I was not going to have him do the surgery but he had said that he wouldn't be hurt if I went with someone else. But I still worried that he would. I left a message with his nurse about my decision and told her I wanted to speak with him anyway and to thank him. But he didn't call back. Probably to be expected. What surgeon in his right mind would want to call back the old woman/colleague who had just thrown him over for another surgeon. I spoke with my son that night and told him of my decision. He chastised me and said Dr. Brooks had every right to be pissed; that I was engaged in blatant doctor shopping. I guess I was, but people do get second opinions and they sometimes go with the second opinion. If you get a second opinion and you then decide that's the way you want to go, you go with that option and that doctor. right? Well, I am still feeling bad about that. I should have handled that better and told Dr. Brooks that I was going to see a plastic surgeon and there was a possibility that that is where I would go. When he didn't call me back I sent him a long email and told him why I was switching and thanked him for all he had done for me. I hope that helps. I want to make amends and I want to apologize if I caused any negative feelings in him. What else can I do? I think the need to get something done fast in this case because of the trip has led to me moving much faster and impulsively than I usually would.
So we are going on the European trip with the remains of this lesion still on my arm. I have my pre op and tests, and the wide excision and sentinel node biopsy scheduled with the plastic surgeon at the medical school. I hope I can enjoy the trip. My husband said he was able to do so when we went to Peru with prostate cancer riding in his mind and the need for radiation treatment right away when we returned. I think I will be able to enjoy the trip. Actually given that adverse events in life often increase the appreciation for positive moments in life may help me maintain this positive mindfulness and appreciation, gratitude for every moment.
I had said half jokingly that "life sucks, then you die" but I don't really believe that. Life is good and every moment of it that we have is a beautiful gift. I can truly say that I believe that even in the face of this adversity.