Sep 1, 2018 08:30PM I_Spy wrote:
This was very timely. I have the BARD1 gene mutation, I had bc, and I just got diagnosed with infiltrating basal cell carcinoma on my chest, right above my reconstruction. Knowledge is power.
Posted on: Aug 17, 2018 01:54PM
High Number of Certain Skin Cancers Linked to Increased Risk of Breast Cancer
August 14, 2018
People diagnosed with a higher-than-average number of basal cell carcinomas have a higher risk of other cancers, including breast, colon, and prostate cancer. Read more...
Posts 1 - 30 (48 total)
Sep 1, 2018 08:30PM I_Spy wrote:
This was very timely. I have the BARD1 gene mutation, I had bc, and I just got diagnosed with infiltrating basal cell carcinoma on my chest, right above my reconstruction. Knowledge is power.
Sep 2, 2018 12:34AM coraleliz wrote:
This rings true for me.
Sep 2, 2018 07:01AM SpecialK wrote:
First skin cancer at 35, and probably at least 15 of them before diagnosis of breast cancer at 54, and I had 3 skin cancers treated between BMX and chemo Have had more than 40 now, including infiltrating BCC. I average 2-3 per year, full skin check every 6 months, 100% of my biopsies have been carcinoma and something is biopsied at every skin check. I have had two recurrences in treated areas and numerous MOHS surgeries, just started to have them on my face within the last two years, and have had two on my lymphedema arm.
Sep 2, 2018 03:30PM I_Spy wrote:
SpecialK -- I'd like to ask you some questions about your BCCs and surgeries and get some advice. I'll just jump in here, but tell me if we should move to private message or if there is a forum for skin cancers that you know of. I just got diagnosed with my first one, micronodular BCC (classified as infiltrating), right over my collar bone. It is literally sitting on my collar bone so it is also near lymph nodes. I have to have surgery because the shave biopsy didn't get it all; path report says: "extending to deep and peripheral biopsy edges."
The doctor at Kaiser wants to do an electrodessication and curettage, but from what I've been reading micronodular is high risk for recurrence and also re-excision, and jesus it is on top of my collar bone, so wouldn't Mohs surgery be better? Per the article the mods posted above, my BARD 1 gene mutation makes me higher risk for more of these, too. I don't think this dermatologist is trained in Mohs, which is why I don't think she suggested it. There is another doctor at Kaiser who is Harvard trained in Mohs, but I'm just wondering how far I should go in fighting for the Mohs.
Also, the reason I was seeing the dermatologist is because I've had a "rash" (for lack of a better word) along my MX scar. There is a red hive-like thing on my right MX scar that has been constant, and then there is a rough patch of skin next to my scar that hurts when touched. This morning that rough patch has turned red with two tiny papules (but honestly it changes a lot, just in general the skin is angry). Everyone has looked at this: the PA in the bs office, an oncologist, and the dermatologist, and no one thinks it is anything (dermatologist said "I don't know; try this anti-inflammatory oil" -- made it worse). I want to demand imaging before they do the skin cancer surgery -- like a chest MRI to include the shoulder/clavicle region, or should I ask for a CT? SOMETHING is going on with the skin on my chest, and I don't feel like we've gotten to the bottom of it yet even with this BCC diagnosis. I emailed my derma and asked her if she thought the scar issue and the BCC were connected, and she said no.
Any advice would be appreciated.
Sep 2, 2018 05:36PM - edited Sep 3, 2018 11:56PM by SpecialK
For an infiltrating BCC I would ask for MOHS, since you need to be sure you have a clean margin. There is no way to know that if you do a “burn and scrape" approach. Infiltrating spots don't grow across the skin, they grow deep so if I were in your shoes I would do MOHS. If you have not had this procedure I do need to say - it can be a long day - they do immediate pathology to determine margins and where I am seen it is about an hour for each level taken. My infiltrating was three rounds so I was there about 5 hours. I was initially concerned with the infiltrating diagnosis because it was on the shoulder just a couple of inches from my axilla that had positive nodes. My diagnosis was in May, surgery not until July - seemed like a long time. I did check with my MO, he did not recommend any imaging but did check with the derm (they went to med school together) and confirmed that the delay was ok. As far as imaging, I remember you had contacted your surgeon in SD, wondering if you can ask the imaging question? I would take MRI over CT to avoid the radiation as long as it will show what you need it to. Has the rash area been biopsied?
Sep 2, 2018 06:09PM I_Spy wrote:
Thank you Special K for all that data, especially the long day part. I'm ALSO dealing with a terrible degeneration in my low back and I'm in a lot of pain. So I will definitely get on top of the back diagnosis and treatment plan before I do the surgery. My dermatologist said the surgery (that she wanted) could be any time in the next three months. I believe even though infiltrating, the BCC is still slow growing, hence the wait is okay.
I really liked the MO I saw at Kaiser, and she is the one who referred me to dermatology. Maybe I will email her and ask her for the imaging. I mean, it isn't unreasonable to do imaging of my chest I think when there is so much going on and we still don't know what's going on with my MX scar situation. My prior providers are all part of another insurance network and I can't see them or be referred by them. Good point on the MRI vs. CT; I don't want the contrast in the MRI either (I have some kidney damage) so I hope they can see what they need to see without the contrast.
They haven't biopsied the rash because they all think it doesn't look like cancer and they want to watch it. Interestingly, the derma didn't think the mole was cancer. I told her that it bleeds off and on, and she said she didn't think it was anything, "but do you want me to take it off if it's bothering you?" She gave me the option! I'm afraid of infection, so I didn't want to do something just for my convenience, but I said "If you take it, will you send it to pathology?" and she said yes if they take it they always do. I thought might as well, so I said "Okay then take it." My decision!! She takes it off, puts it in the preservative, and says "Oh there's a little blood vessel underneath it; that's why it was pink. I really don't think this is anything." So twice she said it was nothing.
I was in the ER on Thursday with excruciating leg pain from my back, being treated terribly btw, and I get an email from the derma where she copy/pasted the paragraph from the path report in block letters: BASAL CELL CARCINOMA, MICRONODULAR TYPE, EXTENDING TO DEEP AND PERIPHERAL BIOPSY EDGES. Now, like most bco sisters, I'm a tough broad and I usually prefer just getting a written report rather than someone spoon feeding me information. But I was in so much pain at that moment and so much has happened lately, and seeing no clean margins and knowing instantly what that meant, I just burst out sobbing. Most of that was because I was shocked. The reason I do so much research and ask so many questions is because I HATE being shocked. I want to be prepared. And she told me twice it didn't look like anything abnormal. So I was shocked.
Other than venting, I guess my point is that I don't really trust anyone so far who has looked at my MX scar and said "I don't think that's cancer," since the dermatologist didn't even think the mole was cancer -- and if I hadn't told her to take it off she wouldn't have.
I will definitely demand MOHS surgery. Definitely. I am also going to work on getting different insurance so that I can be seen at the NCI Comprehensive Cancer Center near me. At this point, I need to be followed at a cancer center so that a multi-disciplinary team can be watching all of the different parts of my body at once. So I may get that insurance and do the MOHS there (although the Kaiser doctor who does it near me is Harvard medical school and Harvard residency in MOHS, so doesn't get much better than that...)
Sep 2, 2018 09:20PM - edited Sep 2, 2018 09:51PM by SpecialK
FWIW, I have never had a biopsy for skin cancer that didn't have dirty edges - they want to take a minimal amount in case it's not cancer, so def expect to see that going forward if you have another biopsy. I have a biopsy and then a removal in a separate procedure every time. Liken it to a core needle biopsy not removing all of a cancer in the breast. I would ask to have the area on the incision biopsied. I had a red, raised, plaque-like solid rash on my chest years before breast cancer - from shoulder to shoulder and neck to waist. It was biopsied because lupus was suspected and it was determined to be an allergic reaction. Turns out I was allergic to my shampoo, the plastic frames on my glasses, among other things! This was a new allergy, and I had an extensive battery of drug and cosmetic allergy testing done.
Sep 2, 2018 09:49PM I_Spy wrote:
Ok good to know. And of course I researched all of the things about micronodular BCC, and there would've been no way for her to get it al in the biopsy, so that part I understood later. It was just at the moment of reading the report that I was shocked. I think of this cancer as a skinny (hopefully) stalk of broccoli: she took off the top, now we have to go back and get the stalk! So I totally understand that we can have repeat performances of this, especially if the BCC is infiltrating/micronodular. There are some apparently that can just be burned off and boom you're done!
I will work on getting the MX scar rash biopsied. Ugh.
Sep 2, 2018 09:58PM MinusTwo wrote:
I find this information most disturbing even though I've never had any genetic testing done.
I had my first basal cell cancer at age 26. So far I've had 6 more removed by MOHS surgery. I too have a full body exam with my dermatologist every 6 months. I'm more fortunate than Special K in that while they freeze 15-20 precancerous lesions every 6 months, I've usually only needed one biopsy a year . And fortunately the last three years have been negative. I expect that means I'm due again this year since my last chemo (protection) was 2014.
Interestingly enough after almost a year full rounds of two chemo procedures (TCHP then AC) my dermatologist said my skin was in the best condition she'd seen it in 30 years. I laughed and suggested her other patients wouldn't appreciate the "cure".
ipsy - I would definitely insist on the MOHS procedure with a derm plastic surgeon. And I concur that you'll likely be there most of the day. With each basal cell I've had removed to examine micro sections, they had to go back to cut more to get clear margins. But at least you're done & won't be called back for the same spot.
Sep 2, 2018 10:21PM I_Spy wrote:
Wow MinusTwo and you had a bc recurrence after a BMX for DCIS! Yikes. I will for sure insist on the MOHS.
Thank you moderators for posting this very informative article.
Oh btw my handle is "I Spy" because I'm a private investigator. Everyone reads it backwards, but I like my handle so I explain. ;) Also, I'm worried people will think I mean tipsy like I drink a lot.
Sep 4, 2018 02:03PM I_Spy wrote:
Ok so minustwo and specialK:
I emailed the derma this morning. I said since the BCC is micronodular, making it aggressive and high risk, wouldn't mohs be more appropriate? She answered and said she would consult with the (only) Mohs surgeon at kaiser and get back to me. She also added that Kaiser pathologists tend to lump "nodular" and "micronodular" BCC together. Like WHAT?? Excuse me? They lump together aggressive and non-aggressive subtypes of BCC? WTH? So basically I don't know whether I have an infiltrating BCC right now, because the pathologists at Kaiser don't bother.
I just received an email from the Mohs surgeon, because apparently she forwarded him my email and he answered me. He said Mohs surgery would only be indicated if the lesion was greater than 2 cm in diameter. That is a pretty big lesion, right? Have you had Mohs for BCC smaller than 2 cm?
Sep 4, 2018 04:55PM MinusTwo wrote:
Two cm? I'm not good with metric, but I think that's almost 3/4". Good heavens!!! Basal cells are known for going deeper in a 'column' instead of spreading out laterally like squamous cell), but the largest of my basal cell cancers was still not as big around as an eraser on the bottom of a #2 pencil. Most were much smaller in diameter, although some turned out deeper when the Mohs was finished.
I thought a basal cell was always infiltrating, although I may be wrong. Below is a statement from cancer.org.
: Mohs surgery has the best cure rate for basal cell carcinoma.
Sep 4, 2018 05:51PM I_Spy wrote:
yea, it is a ridiculous thing to say. I think he meant: Kaiser's policy is no Mohs unless it's bigger than 2cm. Because he is the only Mohs surgeon they have and his time is limited.
I actually got panicky this morning with those emails, because the fact that the pathologists don't consider categorizing aggressive vs. nonaggressive BCC is just alarming. What else do they not bother with?
I am switching my insurance so that I can go to USC for all of my medical care, including the USC Norris Comprehensive Cancer Center. I think I can pull it off so that I have the insurance by October 1st. Then USC can look at the pathology slides themselves, and they can decide if it is nodular or micronodular and what kind of surgery should be done. And they can use their multidisciplinary approach to look at my MX scars and their weird doings, and my lumbar spine that is disintegrating, and the new cysts on my kidney (ultrasound for that tomorrow), etc. etc. I am a complex case and I have to pay to go to the best at this point.
I agree on the BCC growing in a column, and furthermore, she took the mole plus a little bit below it, and the cancer extended to the margins of the biopsy -- so we know it is deeper than what was seen on the surface.
Sep 4, 2018 07:35PM SpecialK wrote:
ispy - none of my skin cancers have been bigger than the top of a pencil eraser and I have had numerous wide excisions and MOHS. I can’t have steri-strips due to adhesive allergy so understitching with strips for a neater incision can’t be done. Unless MOHS is indicated (for me, any recurrence, anything on my face, or infiltrating - so far) I end up with what is essentially a lumpectomy. I stopped doing burn and scrape or freezing a while ago because that has proven not to be aggressive enough for me. Infiltrating BCC is more unusual - less than 30% of cases, most basal lesions are superficial. Infiltrating lesions are more aggressive and at higher risk of recurrence. I am guessing you are correct about the limited availability of the MOHS surgeon dictating who gets MOHS - this was also the reason I had to wait from May to July for my last one, even though it was classified as aggressive. California, like Florida, has enough sun that skin cancer is rampant and demand is high for removal. Sounds like USC is a good choice, as is City of Hope or UCLA - from an old LA girl to a new one!
Sep 4, 2018 07:46PM spendygirl wrote:
I've always been curious about this. Never had a skin cancer until after BC dx. I've now had 7 MOHs surgeries, they were all squamous cell carcinomas. Never had any genetic testing done, but this has to be more than a coincidence. I too leave the derm office every 6 months with 15-30 spots on each arm burned and at least one biopsy. I always feel a little traumatized when I leave there. To be fair, I grew up on the Jersey shore with many blistering sunburns. Oddly enough, no cancer on my chest or face, all arms and legs. Anyway, I believe there's a connection.
Sep 4, 2018 08:24PM - edited Sep 4, 2018 08:27PM by I_Spy
special K I have adhesive allergy too! And it is worse than ever. Just trying to heal this biopsy incision is KILLING me because I'm trying to keep it covered and even the tiniest piece of bandaid adhesive or film is setting off a chain reaction rash.
I'm actually from LA! I moved to San Diego for a few years and now I'm back. So we're both LA girls!
Oh -- and I told the derma I got the mohs surgeon's email and yea, okay, fine, but can we at least find out if it is actually micronodular?? she replied she would and let me know. but OMG I have to ask??
Sep 4, 2018 08:57PM I_Spy wrote:
Ok and what does this tell you about whether or not it is a "slow growing" cancer ... I have a photo of my chest and foobs I took in February, and the mole wasn't there. Does that mean anything one way or the other?
Sep 4, 2018 11:09PM MinusTwo wrote:
Ipsy - below is a link to an adhesive allergy thread. Not particularly active but some great ideas. I only allow Hypafix (my first choice) or Medipore 'tape'. I actually carry it with me to all doc appointments. And make sure they are wiping a barrier film like Cavilon on your skin before using ANY type of tape. Most hospitals have this stuff, as do most infusion centers. But you have to ask & insist.
Sep 4, 2018 11:14PM I_Spy wrote:
Thanks MinusTwo! Have you ever had a BCC mole grow in less than six months? Is that about normal?
Sep 5, 2018 11:45AM MinusTwo wrote:
sorry Ipsy, none of my cancers have been a mole. Hope someone else will know. But yes, in six months amazing cancerous & pre-cancerous lesions grow on my body. I actually keep a list and circle things on my skin with a pen before each six month full body scan.
Sep 5, 2018 11:56AM - edited Sep 5, 2018 11:58AM by I_Spy
None of them have been a mole? Maybe I'm using the terminology wrong. But what were they? How did you see them?
Oh btw my handle is "I Spy" because I'm a private investigator ;) I just realized I could change my handle to make it easier to read! duh.
Sep 5, 2018 01:11PM SpecialK wrote:
ispy - none of mine have been a mole either, mine are red/pink irregularly shaped spots
Sep 5, 2018 01:31PM I_Spy wrote:
Interesting....to be really precise, mine was a raised area of skin that was irregular and bled and then healed. It wasn't there in February per a photo I had. It wasn't a "mole" like a round ... something. So maybe we're talking about the same thing?
Sep 5, 2018 05:25PM MinusTwo wrote:
Yes, we probably are talking about the same thing. Red or white or raised places; sometimes flat or sometimes a bump; sometimes crusty, sometimes bleeding. I get ALL my precancerous lesions frozen so they don't snag on my clothes & start to tear or bleed. In the past, most annoying were under the bra line or the elastic on a 1/2 slip.
BTW - I read on another thread what your name meant. So every time you posted I did a double take to remember it was not "ip-see". Which wouldn't be right either, but that's how my eyes registered it. Now I'll have to get used to the new actual spelling.
Sep 5, 2018 06:01PM I_Spy wrote:
Ok so I'm just saying "mole" when I mean "growth". And so yes you've had them grow in six months. I'm still waiting to hear from the dermatologist as to whether the Kaiser pathologists would care to let us know whether I have an aggressive or non-aggressive basal cell carcinoma. I mean, no rush. Whenever they have time.
Everybody has switched the letters of my handle since 2014, I don't know why I didn't just change it long ago! ;)
Sep 5, 2018 08:08PM VLH wrote:
SpecialK, was anything done differently for the cancers on your lymphedema arm? At 64, I've only had two small bcc lesions (upper chest & back) and one squamous cell carcinoma on my non-lymphedema arm. I had a traveling job for nearly 5 years in my 20s so know the left side of my face & body got lots of sun while driving above and beyond the sun bathing and swimming / water skiing burns. That's my breast cancer / lymphedema side and I feel like it's only a matter of time before something noxious grows there. 😕
Sep 5, 2018 08:26PM - edited Sep 10, 2018 10:43AM by SpecialK
ispy - my regular derm is a MOHS surgeon and it usually takes 2-3 weeks for a biopsy result and my aggressive infiltrating lesion this year was not removed for almost 3 months - that is common - for these type an of lesions the term aggressive is a relative term.
VLH - no, nothing was done differently and my surgeon is very aware that this is my LE arm. The incision after all levels taken was at least an inch deep. Steri strips were mistakenly used by the nurse who dressed the site even though my adhesive allergy was noted in my record. I was mighty pissed because the allergic reaction consisted of very inflamed, blistering and weeping rash about 4 inches by 3 inches - the entire top of my arm. I brought pictures at the suture removal and my allergy is now noted in neon bars on the record. Fortunately there was no lasting issue and my LE is severe enough for garments and a pump. I also just had a 3cm incision at the top of the shoulder of that same arm, a wide excision removal for another BCC, within the last 6 months. So far my LE arm has done ok, but it sure has been challenged! All of my sun exposure was much earlier in my life - very little in the last 25 years, as my VIT D level reflects, but these lesions are still appearing.
Sep 6, 2018 05:57PM I_Spy wrote:
Thank you SpecialK for that info. My sarcasm towards the pathologists was because they've said it is micronodular, making it a high-risk or aggressive form of basal cell carcinoma; however, my dermatologist said that the pathologists at kaiser lump micronodular with nodular (non-aggressive). I find that a bit haphazard. The subtypes are very distinct for a reason, and most literature I've found indicates that Mohs surgery should be performed on micronodular, but not necessarily on nodular. If I hadn't asked for clarification, I'd be thinking I have micronodular. I checked today and the dermatologist still hasn't heard back from the pathologist to verify which subtype I have.
Sep 6, 2018 06:28PM - edited Sep 6, 2018 06:32PM by MinusTwo
I Spy - In my case I would ALWAYS insist on MOHS surgery for anything that is malignant - which includes any kind of Basal Cell or Squamous.
Edited to add - I have a neighbor who doesn't ask questions. Still believes docs are gods. They go to a different derm doc than I do. It hasn't been uncommon for the husband to have an excision & stitches and have to come back in 10 days to cut back into the same place again because the margins weren't clean. This seems to happen once a year but they still haven't figured it out. The latest one he had the choice between excision & radiation and they said a basal cell. He choose radiation every day because he didn't want to miss water aerobics - which surgery would eliminate. Oh boy...
Sep 6, 2018 11:29PM VLH wrote:
Ohmigosh, SpecialK, you've really had a tough go of it! I'm sorry. 😖 I have to deal with the blasted sleeves and pump, too.
I'm allergic to adhesives, too, but my dermatology surgery staff was conscientious about that so, of course, the surgeon I liked moved out of state. My only issue with the recent 3-inch squamous cell excision was a 1-inch blister at the edge of the pressure bandage. The BCC on my chest was done by a PA and looks like a Frankenstein scar with big, white stitch marks.
I hope the skin issues settle down for you. You've faced so much already.