My daughter was born with a Spitz nevi skin lesion on the Left side of her neck. It had remained small, about the size of a pencil eraser, until she was 22. She wasn't interested in having it removed until it started to change.
In 1999 she took a Caribbean Cruise for her honeymoon. She noticed the mole was beginning to change on the cruise. It got larger and turned darker. Maybe it was affected by the intense sun exposure. She decided to have it removed by her family physician and they said the pathology came back fine.
Six years later the mole grew back, it was removed by a surgeon in a local Hospital. Margins were said to be cleared. It took a long time to get the test results. It went from the local pathologist to Chicago and then to Mayo Clinic. They determined that it was Spitz Nevus and not Melanoma.
A year later the mole grew back again. It looked the same as in 2005. She had it removed by the same surgeon in the local Hospital. Margins were said to be cleared. Tests done on it said that it was Spitz Nevus again.
October 2009 the mole comes back again. This time it looks different and grows much faster and larger than before. She went to the same surgeon from before November 2009, he said it was a Keloid scar and injects the area several times with steroids. He said it would cause it to shrink and eventually go away. The area continued to grow larger over the next several months. She was concerned some, but mostly annoyed.
The same surgeon put ear tubes in her daughter's ears the spring of 2010. When we went in for her check-up she asked him about the spot on her neck. It was getting a ring of red around the growing tumor. He looked at it and said she should see a dermatologist.
She was not able to get into the dermatologist until the end of July 2010. The Dermatologist, Dr O, thought it may either be the Spitz Nevus coming back or just a Keloid scar. If it was the Spitz Nevus she would have to have it removed again because of how close it is to Melanoma, but if it was just a scar she would not. Dr O did not think it was Melanoma; she even made the statement “It is not Melanoma, because you would be dead by now”. Dr O said she wanted to do a biopsy to confirm what it was.
August 2, 2010, two punch biopsies were done. They said that because of her history of having Spitz nevus in the past it may take a few weeks to get the test results back. Holly did not give it too much thought. She was still just annoyed that she may have to get it off yet again. It didn’t dawn on her until the beginning of September that she had not heard from them yet. She called the office and inquired about her results. She was told that they were still doing some tests and that they had to send it to the State University Hospital for another opinion.
This was about the time when she started to worry. The next call was about a week later when the Dr said that they would have to send it to California because it was still inconclusive. She told her at this point they had ruled out a scar, and that she would definitely be having it removed. The Dr O told her to think about when she would like to have the surgery. This is when she really started worrying. The Dr didn’t go into detail, but she knew. If they had ruled out a scar that meant they were inconclusive about whether it was Spitz Nevus or Melanoma.
More time went by then she got a phone call on September 29th from the Dr’s receptionist. She is usually very bubbly, but this time she was very monotone. She said that Dr. O was in seeing patients, so she would like me to come in tomorrow and see her. I knew that it was bad news, had it been good news she would have called me back when she was not busy.
September 30th,When we went to the appointment she explained what the different pathologists had found. Dr O did tell her that the pathologist thought she may have been misdiagnosed in 2005 and that it was Melanoma then. She informed her then about the size of area that they would have to remove and that she would have a skin graph done. Dr O still did not feel confident in the diagnosis and did not want to label it as Melanoma quite yet. She wanted it sent to a Spitz Nevus specialist in Ohio and then go from there.
October 6th is the day she officially got the word that yes it is Melanoma and that they had misdiagnosed it in 2005. We were devastated. Dr O was trying to be optimistic, but Holly knew that Melanoma is the deadliest form of skin cancer. The fact that she had it since 2005, just meant that they may not have caught it in time to not be dangerous. She went to the local hospital that night for blood work and began preparing for surgery.
October 27th Surgery day at the University Hospital. Holly was nervous, but glad to be on the way of dealing with this so she could get on with her life. They got her checked in and the nurses and Anesthesiologists came and introduced themselves to us. She told the Anesthesiologists that she wanted them to put nausea medicine in her IV before they woke her up because of her history of having nausea with anesthetic; they assured her that they would.
The first thing they did was the lymphogram. This consisted of them injecting the tumor two times with radioactive dye so that they could map what lymph nodes it drained to (The X-ray technician said it that it feels like a bee sting. She said it was much more than a bee sting!). After the injections she had to wait about 15 minutes to give the dye time to drain. He then took X-rays, they didn’t show any drainage, so she had to wait again. They did this about three times, then the surgeon came to find her because it was taking so long.
When she walked back to where we were the surgeon told us about the test. He said that it was good and bad. Good because of course we don’t want it to be in the Lymph nodes, but bad because it could be strait back where the test can’t see. He said he would have to use an instrument during surgery that picks up the dye to see if it drains anywhere else.
During the surgery he did in fact find two lymph nodes that it drained into, one on top of a lung and the other strait back behind the tumor. The surgery was only supposed to take 2-3 hours, but ended up taking about 5. He had to take off more than he thought. She had a large pad stapled over the skin graph, so we could not see that area, but we were pretty surprised at the size of the scar on her neck and the donor site; she has about a 12 inch incision on her stomach. She also had a drain tube sticking out of the right side of her chest that had to stay in until it quit draining a lot.
Holly was pretty out of it when the Dr came in. He told us about the lymph nodes he found and that they were sent to pathology to see if they were cancerous. He said it would take about 2 weeks to get the results. She was very nauseous when she came to and doesn't remember too much about the days after surgery.
The next week was really painful and uncomfortable. The pad they had stapled over her skin graph was pulling her shoulder skin. It looked like meat hanging from a hook, it was that tight. Any movement of that area was painful. She had to wear clothes that buttoned up because she could not move her arm to put on a shirt. The pain pills made her have an upset stomach and constipation. So it was a tossup at times which symptom was worse.
November 2nd she went back to the surgeon to get her staples out. He said it looked good and was reassuring that as it heals it will shrink in size and fill in more. It looked really sunken in because of how swollen the skin flap area next to it was.
It took about 3 weeks for the swelling to start going down and the skin graft to get more natural coloring. The bruising on her stomach is starting to heal. She is still unable to lift anything or drive. Her neck has very limited movement. She can use her right arm, but still has limited movement with her left.
November 21th the surgeon calls and said they found more cancer on edge of the tissue they removed and she will need more surgery until they have clear margins. He said the pathology report on the tumor showed some scar tissue, some Spitz Nevus, and areas where the Spitz Nevus had turned to melanoma.
December 1st, my birthday, Holly has her second surgery. I had the flu and stayed home. It was only going to be a simple surgery, so I didn't think it would matter if I was there. I stayed home and prayed. Everything worked out great!
Holly was able to go home that afternoon. They gave her all different medications so she didn't get sick. It wasn't necessary to do a skin graft. She actually has more movement on her neck now. The surgeon was able to fix the tightness from the skin pulling on her neck while he was working on her.
December 13 Praise God! We got the news that they didn't find any more cancer in the latest tissue they removed. She will not need any more surgery. She is scheduled to meet with an oncologist to discuss further treatment.
Please pray for wisdom for her and her husband. They are deciding on whether to continue on with traditional aggressive treatment or a holistic nutritional approach.
After the second surgery.
December 14th she had my follow up appointment with her surgeon from my second surgery. He said that she was looking good and healing well. One of the reasons that the case was so hard to pinpoint was that when they looked at the tumor that was removed from the first surgery, they found not only Melanoma but Spitz Nevus and scar tissue. This makes staging the case difficult because one of the factors used in staging is the size and depth of the tumor. She asked him to refer her to another Oncologist.
December 23rd She met with a new Oncologist.
January 5th She decided to take the Interferon treatments for the next year and went in for a PICC [peripherally inserted central catheter] line ...then she will start IVs everyday for a month and shots for a year. Because her tumor went so deep her cancer was rated stage IIB Melanoma. Melanoma is a very aggressive cancer, so they have to take drastic measures. It doesn't respond to traditional chemo or radiation. Interferon works on speeding up your immune system. It is not as toxic as traditional chemo, but still has lots of side effects and lasts for a year.
She was hesitant to get the treatments since they only are 10% more effective and have a lot of side effects, but they convinced her she was too young not to get the treatments. They told her..."think about your daughters...how would you feel if a year from now the melanoma came back and you hadn't done all you could." They also said there was a genetic factor with Melanoma and now the girls are at high risk for getting it.
January 10th She had the first chemo treatment . They said the first week shouldn't be too bad and next week will hit like a brick wall. It is a long process, about 2 hours, of blood tests before they start... IV fluids and nausea medications... Tylenol for the pain... Then they mix up the chemo. That only takes about 20 minutes to drip. It made her really cold and gave her a terrible headache. It still made her nauseated and she threw up the first night. I can't imagine what next week will bring.
Photos removed due to abuse.