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newly diagnosed, confused by PET/CT scan

Forums Cutaneous Melanoma Community newly diagnosed, confused by PET/CT scan

  • Post
    WTL
    Participant

      Hi everybody – "A small hypermetabolic left supraclavicular focus without a definite CT correlate is of unknown etiology." This was the only abnormality on PET/CT scan for newly diagnosed melanoma on right calf. No suspicious enlarged nodes identified in the neck. Biopsy: superficial spreading, Breslow's 0.55, Clark's level 3, mitochic index 2/sq.mm, staged at IIA.

      Hi everybody – "A small hypermetabolic left supraclavicular focus without a definite CT correlate is of unknown etiology." This was the only abnormality on PET/CT scan for newly diagnosed melanoma on right calf. No suspicious enlarged nodes identified in the neck. Biopsy: superficial spreading, Breslow's 0.55, Clark's level 3, mitochic index 2/sq.mm, staged at IIA.

      My dermatologist told me nothing – he passed me off to his PA, who seemed somewhat knowledgeable, removed a basal cell carcinoma but left the melanoma (a lot of it was removed in biopsy – don't know the method used). She said that it wasn't nodular but had a small nodule raised above the skin, and because of the Clark's level I would need to be staged (again?) – from web searching I got the impression I could also be at stage IB, and that Clark's level is not that great a tool.

      Do I need a biopsy of that node in my neck? I read that leg melanomas usually spread to the nodes in the groin. So what are the chances that the neck node is melanoma?

      What concerns me is that the PET/CT did not pick up my prostate cancer, which I know is small and has always been contained in the gland (the PSA is only 1.17 because there's not much of the gland left after two HIFU treatments, soon to be a third). So I have to wonder how accurate the scan is if it didn't see the PC (but it did see my plantar fasciitis!). Could the PC be the cause of that hypermetabolic node? What are the chances the node means no metastasis?

      I seem to be on my own (had to find and set up the PET/CT scan), trying to find an oncologist, get in to County-USC (up to 2+ months wait), or City of Hope or UCLA. The PA said they don't deal with melanomas that can't be easily removed in the office, nor did they give me a referral to an oncologist ("we don't know any").

      And I have no insurance, 6 months shy of Medicare. I'm up at 4 am worrying – the prostate cancer was scary enough (and has taken a lot of our savings), melanoma is scarier. Sorry to go on so long – trying to give as much info as possible, and have no one to ask, so all I do is search the web and make phone calls trying to get consultation and treatment.

    Viewing 3 reply threads
    • Replies
        FormerCaregiver
        Participant

          Welcome to our forum. I don't know how much assistance I can be from this distance, but I feel
          that first thing that you need to do is to find an oncologist who will give you proper medical
          care. You mention that you have prostate cancer as well as a stage IIA melanoma, so that could
          make things complicated.

          Do you need a biopsy of the node in your neck? Maybe, but I really feel that is a question for a
          competent oncologist to answer.

          Hope this helps.

          Frank from Australia

            WTL
            Participant

              Thanks Frank – I did find an oncologist just a few minutes ago, have an appointment for next Tuesday. I was thinking about the biopsy of the neck node because of what I read on the scan report and then looking up that node and hypermetabolic and finding it's a sentinel node, and because the PA said I should get one.

              Yeah the PC is a spanner in the works. It's funny – I'm taking part in an NIH study of a new kind of MRI for PC, followed by a biopsy to see if the MRI worked – that's June 1-2, and I'm still eligible despite having melanoma. But I can't be part of their melanoma studies because I have PC.

              Thanks again.

               

              Bill from Los Angeles

              WTL
              Participant

                Thanks Frank – I did find an oncologist just a few minutes ago, have an appointment for next Tuesday. I was thinking about the biopsy of the neck node because of what I read on the scan report and then looking up that node and hypermetabolic and finding it's a sentinel node, and because the PA said I should get one.

                Yeah the PC is a spanner in the works. It's funny – I'm taking part in an NIH study of a new kind of MRI for PC, followed by a biopsy to see if the MRI worked – that's June 1-2, and I'm still eligible despite having melanoma. But I can't be part of their melanoma studies because I have PC.

                Thanks again.

                 

                Bill from Los Angeles

              FormerCaregiver
              Participant

                Welcome to our forum. I don't know how much assistance I can be from this distance, but I feel
                that first thing that you need to do is to find an oncologist who will give you proper medical
                care. You mention that you have prostate cancer as well as a stage IIA melanoma, so that could
                make things complicated.

                Do you need a biopsy of the node in your neck? Maybe, but I really feel that is a question for a
                competent oncologist to answer.

                Hope this helps.

                Frank from Australia

                Janner
                Participant

                  I'd say find a new derm.  If someone is going to give you a cancer diagnosis, they can at least answer questions for you.  Breslow of 0.55mm is stage I, not stage II.  I'm not even sure why they had you have a PET/CT scan – especially when you have no insurance!  That is not normal for stage I warriors.  If your melanoma was on your calf, I'd say the neck issue is unrelated.  PET scans are notorious for false positives and false negatives.  According to the PET, it seems your PC is not metabolically active.  If it is, another PET scan error.  Basically, the PET is seeing something but the CT can't find any correlating structure or issue.  There are no lymph nodes identified in the neck to be worried about.  I'd say the reason the doc said nothing about this is that there is really nothing to concern yourself about.  The radiologist who reads it reports everything, but it is the doctor who must interpret if that means anything to you.  In the case of the neck area, I'd say it means nothing in terms of either cancer.  Since the CT can't correlate the area to any "structure", there is actually nothing to biopsy even if you were to want to.

                  Stage IB.  Early.  No need for a sentinel node biopsy as long as the deep margin of the melanoma was clear.  (You didn't state this).  Basically, you have the WLE (wide local excision) and then get on with life.  You pay attention to your skin, schedule regular derm appointments, watch your skin for change, and practice sun safety.  Other than that, there's not much else you can do.  Take it easy while healing, the WLE on the calf can be a real pain – speaking from experience.

                  Sorry you had to join the club, but this was caught early.  I had a .58mm lesion removed 19 years ago.  I have had 2 other melanomas since then (8% chance), but am still stage I.

                  Best wishes,

                  Janner

                    WTL
                    Participant

                      Thanks for your fast reply, Janner – I got my diagnosis only last Friday and it already seems like a month ago. Getting active trying to find a doctor and telling my story here, and especially getting responses helps my mood. I agree about the dermatologist – the last time I talked to his PA I got the feeling that they were pushing me out the door.

                      I think the PA's explanation of stage IIA was the Clark level 3 or maybe the mitochic index of 2, and also the fact it had a small nodule in the center protruding upward. These things led her to recommend the scan ($1200). I don't know if the deep margin was clear – I have a copy of the PET/CT but not the biopsy. The PA said it is "superficial spreading, slightly invasive, no extension into the lower dermis" and that's as much as I know. I'm getting a copy of the biopsy report today.

                      She also told me the excision would be so large I'd probably need a skin graft because they wouldn't have enough skin to pull together for stitching.

                      But after being unable to get through the enormous bureaucracies of USC, UCLA and City of Hope, I found the Angeles Clinic, who gave me an appointment for next Tuesday that includes consult, exam, reading the reports and CD and if possible slides, and assessment – $550. I saw something suspicious on my back this morning, so he'll look at it.

                       

                      Thanks again – it's a relief I didn't imagine finding.

                      Janner
                      Participant

                        "I think the PA's explanation of stage IIA was the Clark level 3 or maybe the mitochic index of 2, and also the fact it had a small nodule in the center protruding upward."  The PA is up in the night.  Scans are never done for this type of lesion.  The important part is .55mm and mitosis of 2.  That is what makes you stage IB.  The Clark's Level as you figured out is less important because it is so subjective.

                        "The PA said it is "superficial spreading, slightly invasive, no extension into the lower dermis".   If there is no extension into the dermis, this means the lesion had clean deep margins.  By all means, get a copy of the pathology report to be certain to see if there are other things you should know.  Feel free to post it here and we can help interpret the important bits.  Please make sure the pathology was read by a dermatopathologist as well. 

                        The SNB (sentinel node biopsy) is typically done for lesions greater than 1mm.  Yours isn't.  If your lesion has other negative factors (ulceration or possibly regression), it is worth discussing.  But a .55mm, Clark Level III lesion is considered low risk.

                        I'm glad you found some place to see you.  I've had 3 WLE's on my legs and none required a skin graft.  They were all quite tight, however.  My .58mm was right on top of the shin bone and very tight (or at least it was 19 years ago).  One on my calf is "S" shaped to provide the least stress to the area.  They will take 1cm margins around the lesion.  They typically take an elliptical excision.  The length of the excision is typically about 3 times the width in order to close the wound.  This does depend on anatomy, however, as some areas are more stressful and easier to close than others.  I wouldn't recommend any strenuous physical activity that would aggravate the wound area while healing.

                        Take a deep breath.  I'm sure this is stressful and there is a big learning curve.  But you're really in a good spot with catching this early.  Be aware that only about 8% of the melanoma population EVER have a second melanoma primary.  So while you think there is something suspicious on your back, in all likelihood it is fine.  Please monitor your lesions for CHANGE.  That is typically the most important factor – more so than any appearance in my case.

                        Best wishes,

                        Janner

                        WTL
                        Participant

                          You are a real find – I really do feel much better already. I have the biopsy report, done at Loma Linda Dermatopathology, so I guess that means a dermatopathologist. The biopsy says nothing about a stage, but it does mention a "descent into the dermis" and nothing about a lower dermis, unless that's hidden in the jargon somewhere. The doctor didn't comment much before he went off to give a Botox or something, so I'm thinking the PA decided that – I've noticed PAs and sometimes nurses kind of stretching their boundaries sometimes. Here's the whole thing:

                          First of all it was a shave biopsy. Here's what I've read about those and melanoma: "not generally recommended if a melanoma is suspected because a shave biopsy sample may not be thick enough to measure how deeply the melanoma has invaded the skin." Since the description talks about the base and descent into the dermis, I'm hoping that means the shaving did go deep enough. And probably the report would have noted that the malignancy seemed to extend beyond the biopsy depth.

                          "Microscopic description:

                          Sections show a broad asymmetrical poorly circumscribed lesion, nests of melanocytes varying in size and shape with a tendency to confluence, pagetoid spread of single melanocytes and nests, extension of melanocytes down adnexal epithelium, failure of maturation with descent into the dermis [as opposed to lower dermis?], pleomorphism of melanocytes, prominent mitotic activity near the base, and prominent solar elastosis beneath the melanocytic proliferation. There is no ulceration, lymphovascular or perineural invasion.

                          Microscopic diagnosis:

                          Malignant melanoma, superficial spreading type, invasive to a Breslow's depth of 0.55 mm, Clark's level III, showing a mitotic index of 2/mm2 and a nonbrisk lymphocytosis, present within 3 mm of the margins."

                          I think I like "nonbrisk lymphocytosis," which to me means the bad cells aren't dividing briskly. When I read up on staging, I thought I was more likely a IB, but I wonder about the "descent into the dermis" part. I've also seen a mitotis of 2 being put in the IIA bucket.

                          I know what you mean about the learning curve. I've already done that with PC and basal cell – I suppose I could go into oncology myself. I forgot to mention that the PA also said that along with the surgery the doctor might want to do chemo or immunotherapy. I'm sure she's trying to be helpful, but wonder if that is an instance of a PA (always conscious of not being a doctor – she told me she does trauma surgery in the hospital) taking a little pride in announcing scary possibilities to patients. At the same time, i don't want to get too cocky myself about her statements. I do feel better though, thanks in large part to you.

                           

                          Bill

                          Janner
                          Participant

                            This is a case where you have to infer things.  If there HADN'T been clear margins, it would have been noted.  The way it reads to me, it is as I said before.  Stage IB, Breslow 0.55mm, Clark Level III.  Stage II is not based on mitosis, but on depth of lesion… greater than 2.0mm.  You are not stage II.  I think you may be confusing the pathological staging a bit. 

                            Stage IB (T1bN0M0 or T2aN0M0)

                            • T1b: the tumor is no more than 1.0 mm thick, with ulceration or prescence of > 1 mitoses
                            • T2a: the tumor is 1.01-2.0 mm thick, with no ulceration
                            • N0: the tumor has not spread to nearby lymph nodes
                            • M0: the tumor has not spread to sites distant from the primary tumor

                            You are T1bN0M0 or stage IB.

                            The "descent into the dermis" is another wording for Clarks Level III, that's all.  You have 3mm margins, you want 10mm.  So that means they will be doing the WLE.  I wouldn't worry about the shave biopsy aspect because they didn't transect the lesion with the biopsy so it's not an issue.  Everything else on the pathology would be considered low risk.

                            As for the PA, dump her.  They do immunotherapy / chemo at stage IV.  They may recommend immunotherapy at stage III NED (no evidence of disease) but the current therapy, Interferon, is quite controversial.  It is not done for stage I ever.  None of that is of interest to you at this point – it simply doesn't apply.  She seems clueless at the extent of your disease.  I would consider sending a note to that derm – why should she scare patients unnecessarily?

                            It comes down to this.  You're stage IB.  You need a WLE.  You need to find a good derm you can be happy with – an oncologist is a bit of an overkill but you can go there if you want.  Since oncologists treat active disease and you won't have any after the WLE, there's not much more that they can do for you than a good derm.  The derm is there to help you monitor your skin for other lesions.  Since you've already had BCC, you know that you are at higher risk for it and squamous cell carcinoma.  Any skin changes should be discussed with the derm.  If you can find a skin cancer derm, that'd be the best place!

                            Best wishes and feel free to post any additional questions you have!

                            Janner

                            Janner
                            Participant

                              This is a case where you have to infer things.  If there HADN'T been clear margins, it would have been noted.  The way it reads to me, it is as I said before.  Stage IB, Breslow 0.55mm, Clark Level III.  Stage II is not based on mitosis, but on depth of lesion… greater than 2.0mm.  You are not stage II.  I think you may be confusing the pathological staging a bit. 

                              Stage IB (T1bN0M0 or T2aN0M0)

                              • T1b: the tumor is no more than 1.0 mm thick, with ulceration or prescence of > 1 mitoses
                              • T2a: the tumor is 1.01-2.0 mm thick, with no ulceration
                              • N0: the tumor has not spread to nearby lymph nodes
                              • M0: the tumor has not spread to sites distant from the primary tumor

                              You are T1bN0M0 or stage IB.

                              The "descent into the dermis" is another wording for Clarks Level III, that's all.  You have 3mm margins, you want 10mm.  So that means they will be doing the WLE.  I wouldn't worry about the shave biopsy aspect because they didn't transect the lesion with the biopsy so it's not an issue.  Everything else on the pathology would be considered low risk.

                              As for the PA, dump her.  They do immunotherapy / chemo at stage IV.  They may recommend immunotherapy at stage III NED (no evidence of disease) but the current therapy, Interferon, is quite controversial.  It is not done for stage I ever.  None of that is of interest to you at this point – it simply doesn't apply.  She seems clueless at the extent of your disease.  I would consider sending a note to that derm – why should she scare patients unnecessarily?

                              It comes down to this.  You're stage IB.  You need a WLE.  You need to find a good derm you can be happy with – an oncologist is a bit of an overkill but you can go there if you want.  Since oncologists treat active disease and you won't have any after the WLE, there's not much more that they can do for you than a good derm.  The derm is there to help you monitor your skin for other lesions.  Since you've already had BCC, you know that you are at higher risk for it and squamous cell carcinoma.  Any skin changes should be discussed with the derm.  If you can find a skin cancer derm, that'd be the best place!

                              Best wishes and feel free to post any additional questions you have!

                              Janner

                              WTL
                              Participant

                                Well I'm kind of dazed by the flood of information – and I got 4 voice mails while I was outside telling me I have an appointment tomorrow at 1 pm at County-USC – the place where I had gotten stymied by the bureaucracy. This news comes a few hours after I've already made an appointment at a private clinic for next Tuesday. I will probably call USC and ask who I'll be seeing and how much it will cost. This thing has cost us $2300 out of pocket so far and I haven't even been treated yet. USC might be very good because it's an important teaching/research hospital, but it's also humongous and I've already experienced their bureaucracy. This private place is also a research facility associated with a good hospital, I got through to somebody immediately, and this clinic is in Santa Monica and Beverly Hills – these places are like dermatology central – you can imagine. When it comes to dermatology I wonder if I get what I pay for. I'm sure USC is state-of-the-art, but then there are all these medical students practicing on people…do they let students do this kind of thing? I'm thinking aloud – I mean in writing – here, and I'm thinking I'd rather go with the private place – got a better feeling about it, even with the cost, like I said $550 just for the consult/exam/assessment. My dermatologist charged me $750 to remove the BCC, and then left it for his PA to do.

                                How I find a good dermatologist is a mystery to me – this guy was a referral from my family doctor. I think it's a crap shoot. i figure that even if it's overkill – and I really hope it is – an oncologist will know what I need and be able to refer me to a good dermatologist. I also hope the oncologist isn't enamored of chemo etc. even when I might not need it, kind of like surgeons want to cut you open because, well, that's what they do.

                                Speaking of that – I'm unclear on the margins thing. Am I right that "nonbrisk lymphocytosis" means slow multiplying (slow for cancer cells anyway)? It's present within 3 mm of the margins – the margins of the biopsy sample? When you say 10 mm for the WLE, do you mean a radius of 10 mm or a diameter of 10 mm? The biopsy sample itself is 2cm/20mm, but where the melanoma was/is is about 1mm max. So are you measuring 10mm from the center of that, or 10mm across the whole excision? Here's another tidbit from the PA: when she was describing the WLE, she held her hand up and made a circle about 3-4 inches in diameter, which just added to my shock.

                                I jsut thought of something else – I've gotten a couple of keloid scars from the two other BCCs I had on my back, and they drive me nuts sometimes with itching and needle-like pains, and plus they're ugly – and cortisone shots are not only incredibly painful there but they don't last. Is there a way to treat the healing wound so it doesn't form such a scar? Like aloe or vitamin E or anything?

                                 

                                Thanks Janner. You are truly a godsend. My wife loves you for the relief and education you're giving me. Reminds me of the role I've played for other guys with PC.

                                 

                                Bill

                                Janner
                                Participant

                                  1. Go where you feel the most comfortable.

                                  2. If the oncologist mentions chemo, RUN!  He has no business suggesting that for stage IB.  (I've been stage IB for 19 years and 3 primaries.  I've also been on this site about 10 years.  I've seen it all with the early stage newly diagnosed.  I also moderate a private Yahoo email group for stage 0 and stage I warriors.  After you see your onc, let me know if you want to join).

                                  3.  Ask around if there is a cutanous oncologist.  This would be a derm specializing in skin cancers only.  This is the type of doctor I see at a research facility.  No botox done there.

                                  4.  Nonbrisk lymphocytosis is not melanoma cells.  This is a immune system response to your lesion.  It basically means your body wasn't really too concerned about the lesion.  That's not an uncommon find.  Your melanoma had 2 mitosis.  This is the number that shows how fast the lesion is growing.  Ideally, you'd like to see 0 or < 1.  2 is still considered slow, but it's not 0.  If your mitosis had been 0 or <1, you would have been stage IA instead of stage IB.  (In the old staging system prior to 2010, you would have been stage 1A like I was for many years.  Mitosis was just added to the staging system recently).

                                  5.  You want 10mm margins around the entire sample.  I took the report to say the melanoma was located within 3 mm of the margins.  I could be wrong on that but that's my interpretation.  You want 10mm all around, so that means a width of 2cm and approximately a length of 6cm.  The WLE could easily be longer than 3 inches given the area and how tight the skin is.  The PA probably wasn't lying about that, but there still might be debate about whether a skin graft would be needed.  My deepest primary (.88mm) on my shoulder blade is about 4.5" long.  It would have been longer except my surgeon did a scar like >—<.  He eased in the edges cutting 2 lines on either end.   The one on my calf is about 3" long for just an atypical mole.  It's the one done in an "S" shape to make it work with the tight skin.

                                  6.  Bring up the keloid issue with your doc.  I know many have a problem with this but I haven't really heard of any great solutions.  I don't keloid, however, so may not be up to date on all the treatments available.

                                  Hang in there and let us know how it goes.

                                  Janner

                                  Janner
                                  Participant

                                    1. Go where you feel the most comfortable.

                                    2. If the oncologist mentions chemo, RUN!  He has no business suggesting that for stage IB.  (I've been stage IB for 19 years and 3 primaries.  I've also been on this site about 10 years.  I've seen it all with the early stage newly diagnosed.  I also moderate a private Yahoo email group for stage 0 and stage I warriors.  After you see your onc, let me know if you want to join).

                                    3.  Ask around if there is a cutanous oncologist.  This would be a derm specializing in skin cancers only.  This is the type of doctor I see at a research facility.  No botox done there.

                                    4.  Nonbrisk lymphocytosis is not melanoma cells.  This is a immune system response to your lesion.  It basically means your body wasn't really too concerned about the lesion.  That's not an uncommon find.  Your melanoma had 2 mitosis.  This is the number that shows how fast the lesion is growing.  Ideally, you'd like to see 0 or < 1.  2 is still considered slow, but it's not 0.  If your mitosis had been 0 or <1, you would have been stage IA instead of stage IB.  (In the old staging system prior to 2010, you would have been stage 1A like I was for many years.  Mitosis was just added to the staging system recently).

                                    5.  You want 10mm margins around the entire sample.  I took the report to say the melanoma was located within 3 mm of the margins.  I could be wrong on that but that's my interpretation.  You want 10mm all around, so that means a width of 2cm and approximately a length of 6cm.  The WLE could easily be longer than 3 inches given the area and how tight the skin is.  The PA probably wasn't lying about that, but there still might be debate about whether a skin graft would be needed.  My deepest primary (.88mm) on my shoulder blade is about 4.5" long.  It would have been longer except my surgeon did a scar like >—<.  He eased in the edges cutting 2 lines on either end.   The one on my calf is about 3" long for just an atypical mole.  It's the one done in an "S" shape to make it work with the tight skin.

                                    6.  Bring up the keloid issue with your doc.  I know many have a problem with this but I haven't really heard of any great solutions.  I don't keloid, however, so may not be up to date on all the treatments available.

                                    Hang in there and let us know how it goes.

                                    Janner

                                    WTL
                                    Participant

                                      Thanks for the explanation of nonbrisk lymphocytosis.

                                      Why is the the  excision oblong instead of circular? Something to do with the mechanics of the surgery, having to get the skin back together?

                                      I've been reading contradictory stuff about Mohs for SSM (I'm getting into the acronyms already). Some sources say it's good now because it's been improved with dye markers, others say it's not recommended except for in situ, which I guess mine isn't – except then I saw a reference to in situ SSM, and my head started hurting. There must be a fine line between the two.

                                      I did find a cutaneous oncologist in Encino (part of LA). His site talks a lot about Mohs, but I'd ask first. I can keep looking. I think I'll pass on USC, and between now and Tuesday call around to other possibilities.

                                      thanks again

                                      Bill

                                      WTL
                                      Participant

                                        Thanks for the explanation of nonbrisk lymphocytosis.

                                        Why is the the  excision oblong instead of circular? Something to do with the mechanics of the surgery, having to get the skin back together?

                                        I've been reading contradictory stuff about Mohs for SSM (I'm getting into the acronyms already). Some sources say it's good now because it's been improved with dye markers, others say it's not recommended except for in situ, which I guess mine isn't – except then I saw a reference to in situ SSM, and my head started hurting. There must be a fine line between the two.

                                        I did find a cutaneous oncologist in Encino (part of LA). His site talks a lot about Mohs, but I'd ask first. I can keep looking. I think I'll pass on USC, and between now and Tuesday call around to other possibilities.

                                        thanks again

                                        Bill

                                        Janner
                                        Participant

                                          My cutaneous oncologist is a Mohs surgeon.  He only uses Mohs for Lentigo Maligna.  This is one type of in situ melanoma.  It has an extremely high local recurrence rate.  He does not use it for Superficial Spreading melanoma as he feels the stains done in traditional paraffin are highly superior to the Mohs stains. 

                                          All WLEs are elliptical in nature in order to close the wound.  That's what I was explaining.  If you tried to close a circular wound, you'd get "dog ears" in at least two places.  It is also more likely to split while healing because the tension would be very high.  Making an elliptical excision gives you the ability to close the wound with a decent chance of it staying closed.  WLE's take tissue clear down to the muscle fascia so it's more than just a bit of skin.  Try your own WLE with some paper or fabric and you'll get the idea.

                                          In situ melanoma has a Breslow depth of 0.  It means it hasn't penetrated into the dermis and is totally confined to the epidermis.  Since there are no blood or lymph vessels in the epidermis, it basically lacks the ability to spread.

                                          Janne

                                          Janner
                                          Participant

                                            My cutaneous oncologist is a Mohs surgeon.  He only uses Mohs for Lentigo Maligna.  This is one type of in situ melanoma.  It has an extremely high local recurrence rate.  He does not use it for Superficial Spreading melanoma as he feels the stains done in traditional paraffin are highly superior to the Mohs stains. 

                                            All WLEs are elliptical in nature in order to close the wound.  That's what I was explaining.  If you tried to close a circular wound, you'd get "dog ears" in at least two places.  It is also more likely to split while healing because the tension would be very high.  Making an elliptical excision gives you the ability to close the wound with a decent chance of it staying closed.  WLE's take tissue clear down to the muscle fascia so it's more than just a bit of skin.  Try your own WLE with some paper or fabric and you'll get the idea.

                                            In situ melanoma has a Breslow depth of 0.  It means it hasn't penetrated into the dermis and is totally confined to the epidermis.  Since there are no blood or lymph vessels in the epidermis, it basically lacks the ability to spread.

                                            Janne

                                            Lauren S. Sutton
                                            Participant

                                              Janner you are so helpful, thanks. Sometimes doctors see people so fast we leave with a big question mark over our heads and unsure, thanks.

                                              Lauren S. Sutton
                                              Participant

                                                Janner you are so helpful, thanks. Sometimes doctors see people so fast we leave with a big question mark over our heads and unsure, thanks.

                                                Lauren S. Sutton
                                                Participant

                                                  Janner you are so helpful, thanks. Sometimes doctors see people so fast we leave with a big question mark over our heads and unsure, thanks.

                                                  nicoli
                                                  Participant

                                                    Janner,

                                                    how are you so smart? Are you a doctor? You are only Stage 1 and yet you know EVERYTHING.  What's up with that?
                                                     

                                                    Nicki, Stage 3b, scalp

                                                    nicoli
                                                    Participant

                                                      Janner,

                                                      how are you so smart? Are you a doctor? You are only Stage 1 and yet you know EVERYTHING.  What's up with that?
                                                       

                                                      Nicki, Stage 3b, scalp

                                                      Janner
                                                      Participant

                                                        Just an informed consumer with a head for this stuff.  I obsessively researched and now I try to put that obsession to good use.  No reason why others can't benefit from my anxiety driven research.  I'm nothing special at all and certainly not a doctor.  My Dad recently became stage III (possibly IV) and my mother was just diagnosed with in situ, so now I get to use my knowledge for my family, too.

                                                        Janner
                                                        Participant

                                                          Just an informed consumer with a head for this stuff.  I obsessively researched and now I try to put that obsession to good use.  No reason why others can't benefit from my anxiety driven research.  I'm nothing special at all and certainly not a doctor.  My Dad recently became stage III (possibly IV) and my mother was just diagnosed with in situ, so now I get to use my knowledge for my family, too.

                                                          WTL
                                                          Participant

                                                            Hi Janner – I just replied with an update, but I didn't notice the person I was replying to wasn't you. It's itzimi (sp?).

                                                            WTL
                                                            Participant

                                                              Hi Janner – I just replied with an update, but I didn't notice the person I was replying to wasn't you. It's itzimi (sp?).

                                                              lhaley
                                                              Participant

                                                                I do get keloid scars and I've found that compression works the best for me.  They've had me massage the area (after healed), wear compression garments, even wrapped with ace bandages with foam underneath for compression. 

                                                                Another way to find a good dermatologist is to call a dermapathologist and ask!  When we moved I located some dermapathologists and asked them for suggestions of derms. It worked and I've been happy with my choices.

                                                                Linda

                                                                lhaley
                                                                Participant

                                                                  I do get keloid scars and I've found that compression works the best for me.  They've had me massage the area (after healed), wear compression garments, even wrapped with ace bandages with foam underneath for compression. 

                                                                  Another way to find a good dermatologist is to call a dermapathologist and ask!  When we moved I located some dermapathologists and asked them for suggestions of derms. It worked and I've been happy with my choices.

                                                                  Linda

                                                                  itsmitzi
                                                                  Participant

                                                                    I highly recommend the Angeles Clinic and Dr. Steven O'Day.

                                                                    itsmitzi
                                                                    Participant

                                                                      I highly recommend the Angeles Clinic and Dr. Steven O'Day.

                                                                      WTL
                                                                      Participant

                                                                        Thanks. My appointment is with Dr. Peter Boasberg. I also found a cutaneous oncologist as suggested by Janner – Norman Brooks in Encino. Heard of him?

                                                                        WTL
                                                                        Participant

                                                                          Thanks. My appointment is with Dr. Peter Boasberg. I also found a cutaneous oncologist as suggested by Janner – Norman Brooks in Encino. Heard of him?

                                                                          itsmitzi
                                                                          Participant

                                                                            No sorry, I haven't heard of Norman Brooks, but he has a lot of good reviews on the 'net. I've found that folks are quick to post bad reviews on people and things but slow to say nice things ;o)

                                                                            Good luck to you!

                                                                            WTL
                                                                            Participant

                                                                              Update – I guess I'll just use the thread on hiatus from May 18. Since that date, I saw Dr. Boasberg, a cutaneous oncologist – though he doesn't call himself that, he said that is a good description. All my treatment has been at St. John's in Santa Monica, and we're up to $13,000 and counting.

                                                                              He said I'm T1b, as you predicted. However, that puts me at the tipping point for metastasis, so he wanted a sentinel node biopsy as well. My surgeon is Richard Essner – he's also clinical professor at UCLA and scientific director of the California Oncology Research Institute (?). He's one of two co-developers of the biopsy technique that uses the radioactive stuff they shoot into you and then take a picture to locate the nodes that the melanoma site drains into. Then during the WLE they inject a dye to pinpoint the location and take out the node(s). I had all this done last Thursday June 16th. I'm pretty sore, and my once flawless calf is scarred along with my groin, but not much pain if I take it easy. I liked having such an accomplished guy looking after me and doing the surgery himself.

                                                                              I'm supposed to get the biopsy report this Wednesday. I've been told that it's 95% probability that there is no metastasis. I asked how they can be sure they got the nodes that the cancer would have spread to, and he said they miss maybe 1%. He's fairly confident I don't have metastasis, but he said that if I do immunotherapy is the best therapy. I'm hoping I don't need it – if we keep spending money like this we'll be drained in our old age, and we're already 64.

                                                                              I also checked out County-USC and decided against it – here's that story: 1. On June 10 I was seen by a dermatologist who was going to excise the melanoma that afternoon with no sentinel node biopsy. 2. When I said I wanted the biopsy, he said my tumor was so thin a biopsy wasn't needed. 3. When I insisted, he said he had to go check with his professor(! – turns out he's a resident just beginning his 3rd year) He came back with the word that the SNE wasn't warranted. I insisted again, saying T1b is borderline and it's my life and it's better to be safe than sorry. This is all a no-brainer to be, but evidently not to County-USC. 4. He again checked with his professor (she never came into talk with me), who agreed to refer me to surgery and the surgeons would decide whether to do the SNE. I said I'd take the appointment – I hadn't seen Dr. Essner yet – but that I didn't want to wait till June 22, the day of the appointment, only to find out the surgeons would refuse to do the SNE. I was given no appointment time or place to show up.

                                                                              I left, made an appointment for Tuesday, June 14, to see Dr. Essner, who got me into surgery on the 16th (paid in advance). He said USC is really behind the times in melanoma because melanoma is not what they do. Last Friday, the day after surgery, USC surgery called to set up the time for my surgery. I told her I'd already had surgery and told her why – that I couldn't be certain USC would do the SNE. She said that the surgeons ALWAYS do the SNE when a melanoma patient is referred to surgery because the referral itself is conclusive of the need for the SNE. Oh well – it may have cost less, but I wouldn't be operated on till June 22 – and I'm already past that part and anxiously awaiting the biopsy results.

                                                                              Also during the last month, I went to NIH in Bethesda MD for a study on using MRI to detect prostate cancer, since I already have it (still). The MRI was followed by the most painful prostate biopsy I've ever had (about 6) – and now I'm awaiting the results of that biopsy too. Probably get results of two separate cancer biopsies this week. O joy. I'm hoping for the best. Physically I'm doing as well as can be expected – psychologically this is all a deep shock, reinforced every time I see or feel the scars. It's depressing to say the least – and I'm more scared of melanoma than PC, probably because I've had PC for 3 years now and it hasn't spread. But I've learned to live one day at a time, for now.

                                                                              Sorry I went on so long. Just wanted to fill you in since you were of invaluable help and hope.

                                                                              Bill

                                                                              WTL
                                                                              Participant

                                                                                Update – I guess I'll just use the thread on hiatus from May 18. Since that date, I saw Dr. Boasberg, a cutaneous oncologist – though he doesn't call himself that, he said that is a good description. All my treatment has been at St. John's in Santa Monica, and we're up to $13,000 and counting.

                                                                                He said I'm T1b, as you predicted. However, that puts me at the tipping point for metastasis, so he wanted a sentinel node biopsy as well. My surgeon is Richard Essner – he's also clinical professor at UCLA and scientific director of the California Oncology Research Institute (?). He's one of two co-developers of the biopsy technique that uses the radioactive stuff they shoot into you and then take a picture to locate the nodes that the melanoma site drains into. Then during the WLE they inject a dye to pinpoint the location and take out the node(s). I had all this done last Thursday June 16th. I'm pretty sore, and my once flawless calf is scarred along with my groin, but not much pain if I take it easy. I liked having such an accomplished guy looking after me and doing the surgery himself.

                                                                                I'm supposed to get the biopsy report this Wednesday. I've been told that it's 95% probability that there is no metastasis. I asked how they can be sure they got the nodes that the cancer would have spread to, and he said they miss maybe 1%. He's fairly confident I don't have metastasis, but he said that if I do immunotherapy is the best therapy. I'm hoping I don't need it – if we keep spending money like this we'll be drained in our old age, and we're already 64.

                                                                                I also checked out County-USC and decided against it – here's that story: 1. On June 10 I was seen by a dermatologist who was going to excise the melanoma that afternoon with no sentinel node biopsy. 2. When I said I wanted the biopsy, he said my tumor was so thin a biopsy wasn't needed. 3. When I insisted, he said he had to go check with his professor(! – turns out he's a resident just beginning his 3rd year) He came back with the word that the SNE wasn't warranted. I insisted again, saying T1b is borderline and it's my life and it's better to be safe than sorry. This is all a no-brainer to be, but evidently not to County-USC. 4. He again checked with his professor (she never came into talk with me), who agreed to refer me to surgery and the surgeons would decide whether to do the SNE. I said I'd take the appointment – I hadn't seen Dr. Essner yet – but that I didn't want to wait till June 22, the day of the appointment, only to find out the surgeons would refuse to do the SNE. I was given no appointment time or place to show up.

                                                                                I left, made an appointment for Tuesday, June 14, to see Dr. Essner, who got me into surgery on the 16th (paid in advance). He said USC is really behind the times in melanoma because melanoma is not what they do. Last Friday, the day after surgery, USC surgery called to set up the time for my surgery. I told her I'd already had surgery and told her why – that I couldn't be certain USC would do the SNE. She said that the surgeons ALWAYS do the SNE when a melanoma patient is referred to surgery because the referral itself is conclusive of the need for the SNE. Oh well – it may have cost less, but I wouldn't be operated on till June 22 – and I'm already past that part and anxiously awaiting the biopsy results.

                                                                                Also during the last month, I went to NIH in Bethesda MD for a study on using MRI to detect prostate cancer, since I already have it (still). The MRI was followed by the most painful prostate biopsy I've ever had (about 6) – and now I'm awaiting the results of that biopsy too. Probably get results of two separate cancer biopsies this week. O joy. I'm hoping for the best. Physically I'm doing as well as can be expected – psychologically this is all a deep shock, reinforced every time I see or feel the scars. It's depressing to say the least – and I'm more scared of melanoma than PC, probably because I've had PC for 3 years now and it hasn't spread. But I've learned to live one day at a time, for now.

                                                                                Sorry I went on so long. Just wanted to fill you in since you were of invaluable help and hope.

                                                                                Bill

                                                                                Hope Returning
                                                                                Participant

                                                                                  Hi,

                                                                                  Could you please email me. I have a question I would like to ask you?

                                                                                  Hope Returning
                                                                                  Participant

                                                                                    Hi,

                                                                                    Could you please email me. I have a question I would like to ask you?

                                                                                    WTL
                                                                                    Participant

                                                                                      The sentinel node biopsy was NEGATIVE!

                                                                                      WTL
                                                                                      Participant

                                                                                        The sentinel node biopsy was NEGATIVE!

                                                                                        WTL
                                                                                        Participant

                                                                                          Forgot to add – everyone except my original dermatologist, who recommended a PET scan, has asked why I got it since it was uncalled for, expensive and showed nothing. A $1200 lesson.

                                                                                          WTL
                                                                                          Participant

                                                                                            Forgot to add – everyone except my original dermatologist, who recommended a PET scan, has asked why I got it since it was uncalled for, expensive and showed nothing. A $1200 lesson.

                                                                                            itsmitzi
                                                                                            Participant

                                                                                              No sorry, I haven't heard of Norman Brooks, but he has a lot of good reviews on the 'net. I've found that folks are quick to post bad reviews on people and things but slow to say nice things ;o)

                                                                                              Good luck to you!

                                                                                              WTL
                                                                                              Participant

                                                                                                Well I'm kind of dazed by the flood of information – and I got 4 voice mails while I was outside telling me I have an appointment tomorrow at 1 pm at County-USC – the place where I had gotten stymied by the bureaucracy. This news comes a few hours after I've already made an appointment at a private clinic for next Tuesday. I will probably call USC and ask who I'll be seeing and how much it will cost. This thing has cost us $2300 out of pocket so far and I haven't even been treated yet. USC might be very good because it's an important teaching/research hospital, but it's also humongous and I've already experienced their bureaucracy. This private place is also a research facility associated with a good hospital, I got through to somebody immediately, and this clinic is in Santa Monica and Beverly Hills – these places are like dermatology central – you can imagine. When it comes to dermatology I wonder if I get what I pay for. I'm sure USC is state-of-the-art, but then there are all these medical students practicing on people…do they let students do this kind of thing? I'm thinking aloud – I mean in writing – here, and I'm thinking I'd rather go with the private place – got a better feeling about it, even with the cost, like I said $550 just for the consult/exam/assessment. My dermatologist charged me $750 to remove the BCC, and then left it for his PA to do.

                                                                                                How I find a good dermatologist is a mystery to me – this guy was a referral from my family doctor. I think it's a crap shoot. i figure that even if it's overkill – and I really hope it is – an oncologist will know what I need and be able to refer me to a good dermatologist. I also hope the oncologist isn't enamored of chemo etc. even when I might not need it, kind of like surgeons want to cut you open because, well, that's what they do.

                                                                                                Speaking of that – I'm unclear on the margins thing. Am I right that "nonbrisk lymphocytosis" means slow multiplying (slow for cancer cells anyway)? It's present within 3 mm of the margins – the margins of the biopsy sample? When you say 10 mm for the WLE, do you mean a radius of 10 mm or a diameter of 10 mm? The biopsy sample itself is 2cm/20mm, but where the melanoma was/is is about 1mm max. So are you measuring 10mm from the center of that, or 10mm across the whole excision? Here's another tidbit from the PA: when she was describing the WLE, she held her hand up and made a circle about 3-4 inches in diameter, which just added to my shock.

                                                                                                I jsut thought of something else – I've gotten a couple of keloid scars from the two other BCCs I had on my back, and they drive me nuts sometimes with itching and needle-like pains, and plus they're ugly – and cortisone shots are not only incredibly painful there but they don't last. Is there a way to treat the healing wound so it doesn't form such a scar? Like aloe or vitamin E or anything?

                                                                                                 

                                                                                                Thanks Janner. You are truly a godsend. My wife loves you for the relief and education you're giving me. Reminds me of the role I've played for other guys with PC.

                                                                                                 

                                                                                                Bill

                                                                                                WTL
                                                                                                Participant

                                                                                                  You are a real find – I really do feel much better already. I have the biopsy report, done at Loma Linda Dermatopathology, so I guess that means a dermatopathologist. The biopsy says nothing about a stage, but it does mention a "descent into the dermis" and nothing about a lower dermis, unless that's hidden in the jargon somewhere. The doctor didn't comment much before he went off to give a Botox or something, so I'm thinking the PA decided that – I've noticed PAs and sometimes nurses kind of stretching their boundaries sometimes. Here's the whole thing:

                                                                                                  First of all it was a shave biopsy. Here's what I've read about those and melanoma: "not generally recommended if a melanoma is suspected because a shave biopsy sample may not be thick enough to measure how deeply the melanoma has invaded the skin." Since the description talks about the base and descent into the dermis, I'm hoping that means the shaving did go deep enough. And probably the report would have noted that the malignancy seemed to extend beyond the biopsy depth.

                                                                                                  "Microscopic description:

                                                                                                  Sections show a broad asymmetrical poorly circumscribed lesion, nests of melanocytes varying in size and shape with a tendency to confluence, pagetoid spread of single melanocytes and nests, extension of melanocytes down adnexal epithelium, failure of maturation with descent into the dermis [as opposed to lower dermis?], pleomorphism of melanocytes, prominent mitotic activity near the base, and prominent solar elastosis beneath the melanocytic proliferation. There is no ulceration, lymphovascular or perineural invasion.

                                                                                                  Microscopic diagnosis:

                                                                                                  Malignant melanoma, superficial spreading type, invasive to a Breslow's depth of 0.55 mm, Clark's level III, showing a mitotic index of 2/mm2 and a nonbrisk lymphocytosis, present within 3 mm of the margins."

                                                                                                  I think I like "nonbrisk lymphocytosis," which to me means the bad cells aren't dividing briskly. When I read up on staging, I thought I was more likely a IB, but I wonder about the "descent into the dermis" part. I've also seen a mitotis of 2 being put in the IIA bucket.

                                                                                                  I know what you mean about the learning curve. I've already done that with PC and basal cell – I suppose I could go into oncology myself. I forgot to mention that the PA also said that along with the surgery the doctor might want to do chemo or immunotherapy. I'm sure she's trying to be helpful, but wonder if that is an instance of a PA (always conscious of not being a doctor – she told me she does trauma surgery in the hospital) taking a little pride in announcing scary possibilities to patients. At the same time, i don't want to get too cocky myself about her statements. I do feel better though, thanks in large part to you.

                                                                                                   

                                                                                                  Bill

                                                                                                  Janner
                                                                                                  Participant

                                                                                                    "I think the PA's explanation of stage IIA was the Clark level 3 or maybe the mitochic index of 2, and also the fact it had a small nodule in the center protruding upward."  The PA is up in the night.  Scans are never done for this type of lesion.  The important part is .55mm and mitosis of 2.  That is what makes you stage IB.  The Clark's Level as you figured out is less important because it is so subjective.

                                                                                                    "The PA said it is "superficial spreading, slightly invasive, no extension into the lower dermis".   If there is no extension into the dermis, this means the lesion had clean deep margins.  By all means, get a copy of the pathology report to be certain to see if there are other things you should know.  Feel free to post it here and we can help interpret the important bits.  Please make sure the pathology was read by a dermatopathologist as well. 

                                                                                                    The SNB (sentinel node biopsy) is typically done for lesions greater than 1mm.  Yours isn't.  If your lesion has other negative factors (ulceration or possibly regression), it is worth discussing.  But a .55mm, Clark Level III lesion is considered low risk.

                                                                                                    I'm glad you found some place to see you.  I've had 3 WLE's on my legs and none required a skin graft.  They were all quite tight, however.  My .58mm was right on top of the shin bone and very tight (or at least it was 19 years ago).  One on my calf is "S" shaped to provide the least stress to the area.  They will take 1cm margins around the lesion.  They typically take an elliptical excision.  The length of the excision is typically about 3 times the width in order to close the wound.  This does depend on anatomy, however, as some areas are more stressful and easier to close than others.  I wouldn't recommend any strenuous physical activity that would aggravate the wound area while healing.

                                                                                                    Take a deep breath.  I'm sure this is stressful and there is a big learning curve.  But you're really in a good spot with catching this early.  Be aware that only about 8% of the melanoma population EVER have a second melanoma primary.  So while you think there is something suspicious on your back, in all likelihood it is fine.  Please monitor your lesions for CHANGE.  That is typically the most important factor – more so than any appearance in my case.

                                                                                                    Best wishes,

                                                                                                    Janner

                                                                                                    WTL
                                                                                                    Participant

                                                                                                      Thanks for your fast reply, Janner – I got my diagnosis only last Friday and it already seems like a month ago. Getting active trying to find a doctor and telling my story here, and especially getting responses helps my mood. I agree about the dermatologist – the last time I talked to his PA I got the feeling that they were pushing me out the door.

                                                                                                      I think the PA's explanation of stage IIA was the Clark level 3 or maybe the mitochic index of 2, and also the fact it had a small nodule in the center protruding upward. These things led her to recommend the scan ($1200). I don't know if the deep margin was clear – I have a copy of the PET/CT but not the biopsy. The PA said it is "superficial spreading, slightly invasive, no extension into the lower dermis" and that's as much as I know. I'm getting a copy of the biopsy report today.

                                                                                                      She also told me the excision would be so large I'd probably need a skin graft because they wouldn't have enough skin to pull together for stitching.

                                                                                                      But after being unable to get through the enormous bureaucracies of USC, UCLA and City of Hope, I found the Angeles Clinic, who gave me an appointment for next Tuesday that includes consult, exam, reading the reports and CD and if possible slides, and assessment – $550. I saw something suspicious on my back this morning, so he'll look at it.

                                                                                                       

                                                                                                      Thanks again – it's a relief I didn't imagine finding.

                                                                                                    Janner
                                                                                                    Participant

                                                                                                      I'd say find a new derm.  If someone is going to give you a cancer diagnosis, they can at least answer questions for you.  Breslow of 0.55mm is stage I, not stage II.  I'm not even sure why they had you have a PET/CT scan – especially when you have no insurance!  That is not normal for stage I warriors.  If your melanoma was on your calf, I'd say the neck issue is unrelated.  PET scans are notorious for false positives and false negatives.  According to the PET, it seems your PC is not metabolically active.  If it is, another PET scan error.  Basically, the PET is seeing something but the CT can't find any correlating structure or issue.  There are no lymph nodes identified in the neck to be worried about.  I'd say the reason the doc said nothing about this is that there is really nothing to concern yourself about.  The radiologist who reads it reports everything, but it is the doctor who must interpret if that means anything to you.  In the case of the neck area, I'd say it means nothing in terms of either cancer.  Since the CT can't correlate the area to any "structure", there is actually nothing to biopsy even if you were to want to.

                                                                                                      Stage IB.  Early.  No need for a sentinel node biopsy as long as the deep margin of the melanoma was clear.  (You didn't state this).  Basically, you have the WLE (wide local excision) and then get on with life.  You pay attention to your skin, schedule regular derm appointments, watch your skin for change, and practice sun safety.  Other than that, there's not much else you can do.  Take it easy while healing, the WLE on the calf can be a real pain – speaking from experience.

                                                                                                      Sorry you had to join the club, but this was caught early.  I had a .58mm lesion removed 19 years ago.  I have had 2 other melanomas since then (8% chance), but am still stage I.

                                                                                                      Best wishes,

                                                                                                      Janner

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