› Forums › Cutaneous Melanoma Community › So Frustrated and Confused
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Janner.
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- October 3, 2014 at 8:21 pm
In the beginning of 2013 I went to my doctor with concerns about a pea sized lump on my upper right chest. I had noticed it a few months before and had kept an eye on it as my parents have both had skin cancer, and my entire family has red hair, fair skin, and countless bad burns over the years. My lump had no colour, but after about 3 months it grew a red coloured like mole on it….my doctor booked me an appointment with a dermatologist. Took a while to get in to see him as we only have 3 dermatologists in our area, anyways as soon as he looked at my lump with his scope, he told me it looked like melanoma and then he froze it, told me I would need to come back for a shave biopsey. A month later he did the shave biopsey and told me to come back in a month for the results. When I went back for my results he told me it was not cancerous but he told me he saved my life that day?? He said he did not get the entire lump and it had to come out because it had the potential to change very quickly so he was sending me to a plastic surgeon for a wide excision.The plastic surgeon's office called me the next day and the day after that I was at the hospital for my wide excision. I asked for a copy of my pathology report, that is when I found this site and posted (My Pathology report word for word, What does it mean? 9/16/2013)
TISSUE SUBMITTED
1 shave/ excisional biopsy, right chest
GROSS DESCRIPTION
SCO one piece of shave/ excisional biopsy tissue from the right chest measuring 0.8 x 0.6 x 0.1cm
the specimen is trisected and all tissue embedded.
MICROSCOPIC DESCRIPTION
Multiple serial sections of the submitted skin biopsy sample have been examined. There is a somewhat asymmetrical 4 to 5 mm diameter melanocytic lesion in the center of the skin surface. Most of the S-100 protein positive nevus cells are seen in the dermis and there is associated marked lymphocytic infiltrate suggesting some degree of regression. A few junctional nests are noted. These are epithelloid cells with larger nuclei and nucleoli. Biopsy findings suggest the so called Spark's nevus (ie, nevus with features of Spitz nevus and Clarks nevus). Considering older age and histological atypia with some dermal nevus cells present at the dermal margin focally, conservative re-excision of the lesional area recommended.
DIAGNOSIS
SHAVE/EXCISIONAL BIOPSY, RIGHT CHEST; ATYPICAL SPITZ NEVUS; CONSERVATIVE RE-EXCISION OF LESIONAL AREA RECOMMENDED
. The plastic surgeon told me my lump was childhood melanoma, which he said isn't really melanoma at all and is completely safe. I went back for my second pathology report on my wide excision and he told me the margins were clean and there was nothing to worry about. Which brings me to today… I have another spot which looks like the first lump, but it is smaller, it is a couple inches from the scar of my excision, my doctor has told me to keep an eye on it for change. I have been so sick since just after my wide excision and everything my doctor has been doing for me has not helped and I am wondering if my physical symptoms have anything to do with these lumps? I have low blood count and low iron, I am always cold or sweating, aches and pains, itchy in my groin area and hands that keeps me up at night, constant severe headaches, I feel like my brain is in a fog just cant think properly and I am so beyond exhausted all the time it is really affecting my daily life…..I am a different person than I was 2 years ago. I am at my wits end and so frustrated. Is it possible I was misdiagnosed? Do clean margins means its over and done with, nothing to worry about? I am 48 years old!! How often is someone my age diagnosed with childhood melanoma? I was recommended to get a second opinion on my first pathology report because of my age but opted to wait on my second report as I had posted just a day before getting those results… that my margins were clean, thought I had nothing to worry about but now am wondering with how I have been feeling for so long? Also in my pathology report where it says 'associated marked lymphocitic infiltrate' Does anyone know what exactly that means?
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- October 4, 2014 at 2:28 am
Hopefully someone here can answer about the report. Since I started at stage 4 in my bones I really know nothing about that. However what you are feeling is a different story. It may be a crazy idea but you might want to get a pet scan. The reason I'm saying is in late april of 2013 I would feel kind of lousy with chills, sweats and just not feeling good. But it wasn't all the time. It would be for about 20 minutes then I would be ok for a couple hours then it would come back. But I did not have the headaches. 3 weeks go by and I wake up with a large bulge on my side. They diagnose that as a seperated muscle. Finally by early June the CT scan shows something in my t10 vertebrae. Several scans later and boom stage 4. So instead of like 1 ultrasound, 2 CT scans, 3 MRIs then a PET scan they could have just started with the pet scan. Also since a pet scan cannot detect in the brain a head MRI is also a good idea. I was 46 last year. Now 47. I could just be jumping to eliminate the worse case scenario. It could just be with low iron you do not have enough red blood cells. Probably maybe some similar things going on causing the things you are feeling. Maybe the stress causing headaches. Just an idea to think about though and just my opinion.
Artie
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- October 4, 2014 at 2:28 am
Hopefully someone here can answer about the report. Since I started at stage 4 in my bones I really know nothing about that. However what you are feeling is a different story. It may be a crazy idea but you might want to get a pet scan. The reason I'm saying is in late april of 2013 I would feel kind of lousy with chills, sweats and just not feeling good. But it wasn't all the time. It would be for about 20 minutes then I would be ok for a couple hours then it would come back. But I did not have the headaches. 3 weeks go by and I wake up with a large bulge on my side. They diagnose that as a seperated muscle. Finally by early June the CT scan shows something in my t10 vertebrae. Several scans later and boom stage 4. So instead of like 1 ultrasound, 2 CT scans, 3 MRIs then a PET scan they could have just started with the pet scan. Also since a pet scan cannot detect in the brain a head MRI is also a good idea. I was 46 last year. Now 47. I could just be jumping to eliminate the worse case scenario. It could just be with low iron you do not have enough red blood cells. Probably maybe some similar things going on causing the things you are feeling. Maybe the stress causing headaches. Just an idea to think about though and just my opinion.
Artie
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- October 4, 2014 at 2:28 am
Hopefully someone here can answer about the report. Since I started at stage 4 in my bones I really know nothing about that. However what you are feeling is a different story. It may be a crazy idea but you might want to get a pet scan. The reason I'm saying is in late april of 2013 I would feel kind of lousy with chills, sweats and just not feeling good. But it wasn't all the time. It would be for about 20 minutes then I would be ok for a couple hours then it would come back. But I did not have the headaches. 3 weeks go by and I wake up with a large bulge on my side. They diagnose that as a seperated muscle. Finally by early June the CT scan shows something in my t10 vertebrae. Several scans later and boom stage 4. So instead of like 1 ultrasound, 2 CT scans, 3 MRIs then a PET scan they could have just started with the pet scan. Also since a pet scan cannot detect in the brain a head MRI is also a good idea. I was 46 last year. Now 47. I could just be jumping to eliminate the worse case scenario. It could just be with low iron you do not have enough red blood cells. Probably maybe some similar things going on causing the things you are feeling. Maybe the stress causing headaches. Just an idea to think about though and just my opinion.
Artie
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- October 4, 2014 at 4:32 am
My thoughts after reading your post — I think I'd definitely be finding a new derm if I were you. ANY DERM THAT FREEZES SUSPECTED MELANOMA is no derm in my book. Freezing is NOT the right choice in any instance if melanoma is suspected. That's my personal opinion, but I'd run away.
I'd ask for a second opinion on the original pathology report. Spitz nevi aren't found in 40+ year old people. If you were in your early 20's, it would be questionable. But it seems suspect to me. The fact that you have another lesion with similar characteristics and close by is troubling. I'd definitely be demanding it be removed and sent to a melanoma center for pathology along with a reread of the first lesion. I'd suggest sending the original slides to UCSF as they have experts that specialize in Spitz nevi pathology there.
Honestly, your current symptoms shouldn't be related to the original lump if that pathology was correct, and even another lesion close by doesn't have to be anything sinister. But I think the best thing to do is get a reread on the first pathology, and removal of the second lesion just in case. Also sent to a specialist for pathology read.
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- October 4, 2014 at 4:32 am
My thoughts after reading your post — I think I'd definitely be finding a new derm if I were you. ANY DERM THAT FREEZES SUSPECTED MELANOMA is no derm in my book. Freezing is NOT the right choice in any instance if melanoma is suspected. That's my personal opinion, but I'd run away.
I'd ask for a second opinion on the original pathology report. Spitz nevi aren't found in 40+ year old people. If you were in your early 20's, it would be questionable. But it seems suspect to me. The fact that you have another lesion with similar characteristics and close by is troubling. I'd definitely be demanding it be removed and sent to a melanoma center for pathology along with a reread of the first lesion. I'd suggest sending the original slides to UCSF as they have experts that specialize in Spitz nevi pathology there.
Honestly, your current symptoms shouldn't be related to the original lump if that pathology was correct, and even another lesion close by doesn't have to be anything sinister. But I think the best thing to do is get a reread on the first pathology, and removal of the second lesion just in case. Also sent to a specialist for pathology read.
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- October 4, 2014 at 4:32 am
My thoughts after reading your post — I think I'd definitely be finding a new derm if I were you. ANY DERM THAT FREEZES SUSPECTED MELANOMA is no derm in my book. Freezing is NOT the right choice in any instance if melanoma is suspected. That's my personal opinion, but I'd run away.
I'd ask for a second opinion on the original pathology report. Spitz nevi aren't found in 40+ year old people. If you were in your early 20's, it would be questionable. But it seems suspect to me. The fact that you have another lesion with similar characteristics and close by is troubling. I'd definitely be demanding it be removed and sent to a melanoma center for pathology along with a reread of the first lesion. I'd suggest sending the original slides to UCSF as they have experts that specialize in Spitz nevi pathology there.
Honestly, your current symptoms shouldn't be related to the original lump if that pathology was correct, and even another lesion close by doesn't have to be anything sinister. But I think the best thing to do is get a reread on the first pathology, and removal of the second lesion just in case. Also sent to a specialist for pathology read.
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Tagged: cutaneous melanoma
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