High Number of Certain Skin Cancers Linked to Increased Risk
Comments
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MinusTwo: These stories definitely help me to insist on the Mohs. I will have to change insurance, but once I realized that the Kaiser pathologists lump micronodular in with nodular willy-nilly, I lost my confidence in getting cancer surgery done there. Here's the thing: I really like Kaiser. I had Kaiser my whole life until I went back to school and was given basically free insurance with an incredible hospital (UCSD). My body has been sort of disintegrating since 2015 (bc is just part of it), and my medical history is so complex I have to bring printed sheets with me to the doctor or I will forget my surgeries, procedures, bizarre happenings, etc. Right now I have something wrong with my spinal cord that is causing severe pain, and I have to get to the bottom of that while trying to make sure they take my skin cancer out properly so I don't end up with two or three surgeries for the same thing. I need to be followed by the best doctors at the best hospitals. Kaiser will not be sad to see me go haha (I am very expensive). I'm doing this while self-employed and trying to generate work and do the work and I'm severe pain.
I'm with you: I don't understand people that say: "Well, the doctor says...." I mean, what the doctor says is useful and interesting, but it is not the word of God. What the doctor says is the beginning of the journey. I've really liked my family doctor at Kaiser and the physical medicine doctor I saw for my back, but even she is having to just turn me over to pain management to sort out my spinal cord. I'm awake late tonight because I'm in too much pain to sleep. We bco girls are used to dealing with the short end of the stick, so I know I'm preaching to the choir here.
Thanks for the confidence to insist on the Mohs. It seemed correct with everything I was reading (clinical studies) and this just confirms it.
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VLH - aw, you're sweet! I try to take this in stride and I have come to accept that the skin cancers will continue and because it is so common to get them on the shoulders and arms due to exposure I am sure my poor LE arm will have more BCCs removed. We have to be vigilant about the bandaging - this has been an issue for the many BC reconstructive surgeries I have had as well, my current PS has been very good about using stuff that doesn't cause issues, the previous one not so much. I was upset about the rash from the last steri-strip debacle because my DH's high school reunion in Miami (in July - who does that? It was so hot!) was right after the suture removal and I had to replan my whole wardrobe to cover this ugly rash - also meant I was hot because I had sleeves..... I am also allergic to topical antibiotic so have to be careful about that along with the bacitracin irrigant commonly used during surgery. Pretty soon I will be living in a protective bubble, lol!
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I think it's interesting that so far...everyone? on here who has had skin cancer and bc is also allergic to adhesive. I've been okay with neosporin but I just this week tried to put it on my biopsy sore and it flamed red so I quickly wiped it off. We can have our own little study here.
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ispy - the Allergic Girl's Club, lol! It is an interesting thing though, right? I found out about the topical antibiotic allergy through drug and cosmetic testing by a derm after that plaque like rash thing I mentioned earlier that was initially thought to be lupus. It is important also because there is a kidney infection IV drug that is neomycin (Neosporin) based.
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Well that is good to know. I have a known allergy to Bactrim, a sulfa drug, so it would make sense that I'm allergic to Neosporin. The Bactrim allergy came on suddenly (I took it through my BMX and reconstruction, but 8 months out took it for a red area near my reconstruction and had to go to the ER with hives and throat closing). So probably the neosporin is just catching up. But also, my chest skin has been so upset lately (STILL trying to figure out what the hive like thing is on my MX scar), and then I get a biopsy and the adhesive allergy is literally worse than ever. Normally I can get away with a bandaid for a day or two, but this time I absolutely couldn't use any adhesive -- I tried a tiny bit of tegaderm, etc etc and I got blisters. So somehow there seems to be a connection.
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Miami in July, SpecialK? That's just crazy talk! My arms are hideous so I always look for 3/4 sleeves or longer, but miss tank top days. It's ironic that my dramatically reduced bosom could rock a strapless look, but the rest of my body is calling for a full-length caftan.
I don't do bandaging... just the pump and sleeve + gautlet. The LE specialist mentioned it, but I balked when she said I would need to wear the initial bandaging for two weeks, wrapping the entire hand and arm for showering. I had to have a PICC line when draining a seroma resulted in a nasty infection, but that bandaging wasn't as intrusive when it came to households tasks, including caring for 2 - 50 pound dogs.
I_Spy, interesting correlation with the adhesive allergies, isn't it, albeit with a tiny sample size? Luckily, I have no issues with topical antibiotics. I'm at fault to some extent with the initial skin cancer excision because I'd forgotten about my skin becoming very irritated when I had 37 staples following hip replacement surgery. Actually, surgeries because an incorrect component was inserted initially. The drop in blood pressure from two major surgeries in two days put me into kidney failure, I needed a blood transfusion & my three-day hospitalization morphed into a full week. I was fine after the initial surgery, had five friends in my room to celebrate that night only to feel like I'd been hit by a truck after the second one so maybe I blocked out the skin reaction as minor? 🤔
May our skin be free of #&$*@ cancer cooties from this point forward!
Lyn
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Okay so I finally heard back from my dermatologist. She said she spoke with the pathologist to confirm that I had micronodular basal cell carcinoma, and not just nodular -- since she wasn't sure Kaiser doctors differentiated between aggressive and non-aggressive sub-types in path reports [eye roll]. Here is her answer:
"He reviewed the slide and let me know that the lesion is small and superficial. There was one very focal area of micronodular, and he does not feel that aggressive therapy is warranted and he does not feel this is a high risk lesion. We can do EDC, or we can do an excision. If we do excision, I will send you to a surgeon to cut out the lesion and repair it with stitches.The surgeon will send the specimen to the pathologist again to check the margin for any residual lesion. EDC is less conclusive since I just scrape and burn the lesion and do not send anything to the lab. EDC is standard of care and acceptable. Excision may be a good option to give you piece of mind that the lesion is completely gone, but you will have a bigger scar and stiches. Mohs is not necessary."
So here are my thoughts:
1. Yay, glad he doesn't think it is a high risk lesion. Although calling it "superficial" seems strange; if it were superficial, by definition we wouldn't need to go back and dig deeper to get the rest of it, right? We took the surface, or "superficial" part of the lesion and there is still more. Anyway, glad he doesn't think it is high risk. I'll take it.
2. Isn't she cute thinking I'm worried about scars on my chest? 1 cm is not a scar; THESE are scars hahahaha.
3. Are we all in agreement I should have the excision procedure with a surgeon, and then send the tissue to the pathologist for review to make sure the margins are clean? If I just do electrodessication and curettage, I'll never know if we got all of the cancer cells. Plus it is sitting right on top of my collar bone.
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I Spy - just heard from my son, who is on an HMO plan at Kaiser, that they have significantly reduced his dermatology benefits. In his case, the PCP is supposed to diagnose. Give me a break !!! Thank goodness he understand from past history that most PCPs wouldn't be able to identify or property treat pre-cancerous lesions. He is paying to go to derm doc outside the network for a full body scan once a year since he is at significant risk. He then hopes to take that report to his PCP and by virtue of that, coerce the PCP into providing a recommend to a derm specialist if necessary. Sounds like you're lucky to even get to a derm doc.
I understand your sarcasm & agree. Glad it's not "high risk". If you can't somehow get the MOHS, it looks like your next best option is excision with a surgeon.
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Thanks MinusTwo!
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VLH - Miami in July - I know, right? I get that they used to plan these reunions in the past at the height of summer because people had young kids and they needed to be out of school, but this was his 40th reunion - if anyone had young kids, that is a whole separate problem, lol! My last reunion (also 40th but 3 years ago) was in September, in Los Angeles, but it was 100 degrees and this was an outdoor event. Um, what? Oh well, had fun anyway. I too am wearing clothes with sleeves - nobody needs to see my 62 year old arms. Or me in a bathing suit. Or shorts. Lol! Wanted to elucidate - when I said bandaging I meant after surgery for the adhesive issue - I have so far escaped bandaging for LE. Thank goodness.
ispy - superficial BCC accounts for a large percentage of lesions, meaning that it doesn't go very deep and tends to spread across the skin rather than deep into it. The vast majority of my BCCs have been superficial, but this doesn't necessarily mean they don't require MOHS. I have had them recur, or had them on my face, and those ones have required MOHS. Otherwise, mine have been treated by wide excision, burn and scrape, cryotherapy, and topical cream (Aldara) that accomplishes desquamation, initially in a clinical trial with NIH. Keep in mind that margins are important in skin cancer just as in breast cancer. Biopsy is inexact and often has dirty margins, so going back in to clean up surgically or by any other method is for the accomplishment of good clean margins, even if the BCC is superficial. Also, I would do the excisional procedure if for no other reason than to get the pathology.
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Thanks SpecialK. I think I will request the excision so the tissue can be sent to pathology and I can be sure.
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Thank you ladies for all this information on skin cancer.
I am BRCA2+ (maternal side) and I had some great uncles on the other side of the family with skin cancer.
My brother (not yet tested for BRCA) has had some skin cancer removed from his face. He's an environmental engineer and works outdoors a lot. He's not as good with medical details, so I don't know what type of skin cancer nor the type of biopsy or excisions he had.
I spent my first 32 years in Massachusetts, and I wasn't an outdoorsy person. I've lived here at the Jersey Shore for 25 years. I'm noticing a few dark spots on my face that may need attention.
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Hi Mominator... always good to stay on stop of changing skin!
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One more skin cancer person chiming in....
I have had plenty of BCC, one Squamous, and one Melanoma. The Melanoma was when I was about 35. It appeared as first an itch, and then a black spot on a mole. AND I too have a sensitivity to adhesives (not horrible, but Curad gives me a red welt -- Bandaid does not.) And now I have TNBC. 2 treatments down and 4 to go.
Basals look pinker, rougher, shinier or a litlle raw. One of mine was a little growth that was a bit like a mole but not brown, just skin colored. The squamous cancer was like a pimple that would not heal.
I grew up in California and have had a ton of sun exposure. Most of my cancer on L side or face and L arm (driving exposure). My understanding is that Basal Cell Cancer is NOT life threatening. Squamous is a bit more serious, but it's melanoma that's the potential killer.
I am a DES daughter. DES (diethylstilbesterol) was a synthetic estrogen they used to give in the 1950's and 60's to pregnant women to prevent miscarriage. My Mom took it when pregnant w me. Anyone else here exposed to DES, or exposed to other endocrine disrupter? Zero cancer in my family tree, and lots of 90 year olds.
I had genetic testing and it came up with a variant on TP53... but NOT the known bad one. A different one of "uncertain significance."
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santabarbarian - I have no info on whether DES was involved for me as I am adopted. There was a thread on this site regarding DES and whether there was a link to breast cancer. I grew up in California as well with a lot of early sun exposure, then lived for four years in a tropical location - first skin cancer five years later. An interesting factor for me - I am a downwinder to the Santa Susana Field Lab nuclear accident. I lived on a cul de sac of 10 houses, we have had stomach, liver (2), lung, bile duct, breast cancer, and leukemia. Those are just the ones I know about since there were neighbors who moved away. My dad and brother were both stage iv de novo. In addition to breast and skin cancer, I had ongoing breast cysts from my 20's, ovarian cysts, a 3cm pre-malignant ovarian mass, uterine fibroids too numerous to count, a 3cm nerve sheath tumor in my calf, and a pregnancy that ended at halfway due to demise from major organ malformation/failure. All of that seems like too much for coincidence.
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bump
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SantaBarbarian sorry for no response to your bump for so long. I'm dealing with a new diagnosis: arachnoiditis. The pain is like nothing I've ever dealt with in my life, and it is ruining my life. I'm not exaggerating. Anyway, I wanted to respond to your post:
The BARD1 mutation is the gene we've been talking about. You mentioned TP53 (p.s. I don't think any of them are "good" but I know you meant you didn't test positive for a BRCA mutation). Trivia: everyone has these genes; the problem comes in when there is a mutation to the gene. The genes suppress tumors, so if one has a mutation to the gene it doesn't work as well at suppressing a tumor. The BARD1 gene mutation has just been shown to have a higher incidence of skin cancers as well as bc.
My mother took a form of DES that was supposed to be not as bad...? I can't remember, but when the news hit about how bad DES was, my father called and got the information that the one my mother took wasn't as bad or something. But the study mentioned by the moderators above is about the BARD1 mutation being linked to higher incidence of skin cancers.
I too live in CA, although I tried to be a "safe" tanner (now they say there is no such thing, if your skin changes color you've damaged it). I did have some pretty bad sunburns as a child just by accident.
Hope that answers some of your questions!
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I actually meant I did not have Li Fraumeni syndrome, from TP-53, rather I came up with a different mutation of TP53. I do not have BRCA or anything else but that one unknown TP 53 mutation-- and DES exposure-- to explain my cancer risk...
Thanks for your reply!
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