WTL

The sentinel node biopsy was NEGATIVE!

The sentinel node biopsy was NEGATIVE!

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?).

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?).

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.

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.

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

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

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?

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?

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

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

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

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

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