Great...another cancer to contend with.

RainbowRita
RainbowRita Member Posts: 72 Member

So...I was diagnosed with skin cancer on my lower right eyelid a couple of weeks ago. "Basal cell carcinoma, sclerosing variant", to be exact. When I heard BCC, I thought, "Well, that is the *good kind* of skin cancer, at least it isn't melanoma." And then I went to Dr. Google and found out not such a "good kind" after all. Figures! Here's a quote:

"The sclerosing basal cell tumor is perhaps the most destructive form of skin cancer. In its early stages it is unimpressive. Flush with the surface of the skin and with few color changes, it often goes unnoticed for a long time. Eventually the normal skin contour fades and the loss of tissue substance becomes apparent.

Finger-like projections extending into the surrounding tissue make a surgical cure difficult. The margins are poorly defined and if all of the infiltrating tendrils of tumor are not removed, recurrence of the tumor is likely. Areas around the nose, eye and ear are most commonly affected." https://lloyd-derm.com/conditions/skin-cancer/basal-cell-carcinoma

Like Deb, I will research a subject to death, and like Deb mentioned in her article, how can you ask good questions about something if you know nothing about it? So yes, I went online and read every article I could find on sclerosing BCC also known as "Morpheaform BCC". They all said pretty much the same thing...hard to detect because it doesn't look like most skin cancer, but resembles an innocent scar; hard to define borders, so likely to reoccur; can have extensive dermal spread. etc.

Obviously, this information is not easy to swallow. Good news is that this type of skin cancer does not typically metastasize to other areas, but bad news is that it can have extensive local spread. Even though I know they can do great things in regards to repair and reconstruction these days it is still freaking me out that my face will never look the same.

I had a hard time just piercing my ears because I knew it would be "permanent", I could never tolerate the idea of tattoos and the only way I was able to accept the tattoos for radiation treatments was because they were so small and in a spot I don't normally see. So even though I tell myself that I'll look "OK" eventually, it isn't helping my anxiety much about what is to come.

It also pisses me off that I got skin cancer even though I have worn either a hat or sun visor when in the sun for pretty much my entire adult life. I would get headaches from the sun's glare, so always had my head covered. I just want to stamp my feet and yell, "Not fair, at least time I was doing the right thing!" My sister, on the other hand, has been a sun-worshiper pretty much her entire life. So why do I get skin cancer and she's OK?

The funny thing is...I don't consider myself an anxious person. Once I found that the endometrial cancer hadn't invaded my bowel, bladder or lymph nodes, I don't think I had as much anxiety about my endometrial cancer as I do about this stupid skin cancer. How weird is that? Maybe part of that is because no one would see my hysterectomy scars. I never told very many people about my endometrial cancer, but I sure as heck can't hide my face.

I keep thinking I'll look like Frankenstein's monster...for awhile anyway. Good thing I can still wear a face mask out in public, so that can hide most of it, I hope! And even knowing all that, I still have this knot in my stomach almost all day, every day. I was OK at first, but once I found out the date of the surgery, I started getting anxious about it. By the way, the surgery will be April 21st. I think the anxiety got worse when I found out how quickly they got it scheduled. First I will have Mohs surgery to remove the cancerous cells and then the ocular plastics specialist will do the reconstruction of "the defect".

I decided to quit reading articles about BCC to lower my stress levels, but it isn't helping. Not yet anyway. I am thinking that maybe taking some Ativan for a couple of days might worth doing since I have it here anyway.

And here I thought 2022 was going to be a better year...yeah, right. <sigh>

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Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member

    Oh Miss Rita, I am sorry to hear this. Prayers for you dear.

  • cmb
    cmb Member Posts: 1,001 Member

    Skin cancer can be so insidious, even when you take all the precautions. I hope the surgery and reconstruction process go smoothly, although I can understand your anxiety about something that will be visible for a while. Maybe it's time to go "Hollywood" style and wear some attractive sunglasses for a while - regardless of whether you're inside or out, just like some of the stars do!

  • Lyn70
    Lyn70 Member Posts: 214 Member

    Hi, Rita,

    I saw your response on the board regarding anxiety and wanted to chime in with a 'Hello' and that I was missing your posts. I see the source of your anxiety now with this new dx! I agree, this just isn't fair! Cancer doesn't follow rules well. This board has taught us to be such good advocates for ourselves and do the research. You have done that and set that aside for now. Ativan helps the anxiety all right but I find it makes me very sleepy. I don't know if it affects you the same way.

    Praying your Mohs surgery on the 21st goes well and all the cancer cells be removed so as not to spread. May the eventual ocular reconstruction restore your confidence. In the meantime, masks are a great cover-up. I like the flashy sunglass idea!

    ((Hugs))

  • Harmanygroves
    Harmanygroves Member Posts: 487 Member

    Well THIS IS absolutely unfair! and I am so, so, so sorry that you are--like me--researching nonstop and probably doing yourself no favors whatsover. Rita, wow! In the most selfish way, I'm glad to see you but not like this. Doggone it, not fair.

    You hang in there, and we're all here for you.

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member

    Well, expletive, expletive, expletive. This is really crummy and upsetting. I am so sorry.

    I have had 4 basal cells. Like you, I figured it was the “good”kind but still unfair since I’ve followed the rules re sun exposure because my coloring is very fair. Last week I had my annual checkup and asked how come one was where the sun never shines. Turns out there’s a basal variant that isn’t correlated with solar power.

  • RainbowRita
    RainbowRita Member Posts: 72 Member

    Thanks for all the good wishes/prayers and helpful comments. I typically only took the Ativan at night during chemo to help with sleep. I never took it during the day because I didn't want to be groggy. And that's why I have avoided taking it during the day, so far. So far, I've only taken them a couple of times just before bedtime to help me sleep.

    If I stay busy, it helps, but the "gut ache" still seems to be sticking with me today. However, I noticed the pain was much better when I was at my cancer rehab exercise class today. Those classes are at the HP Neuroscience Center and watching people going by in wheelchairs and using walkers made me aware that, all things considered, I have it so much better than a lot of people in regards to my health. So I'm going to do my best to not dwell so much on the negatives in the coming days, but it is not going to be easy. Just hoping that the month of May be a better month for me than April. :-)

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member

    Rita,

    Best of luck with your coming surgery and recovery. We are finding out that it is not at all uncommon to have two cancers, sad as that might be. It is difficult enough to be dealing with one cancer, much less two. One the bright side, I have three family members who had various versions of your cancer, my son, my uncle and my ex-husband. All fair skinned, two have had more than one Moh's because this thing is a real jerk of a cancer, but they were well over 70 at dx. Especially those of us who in our youth subjected ourselves to even small sun exposure not knowing the dangers. Remember when baby oil was all the rage to tan? Anyway, they all recovered well, their scars are almost invisible after time, and have been cured of that particular incidence. I hope the same for you, dear Rita. You know the drill, we are here for you if you need us. ❤️

    xxoo

    Denise

  • RainbowRita
    RainbowRita Member Posts: 72 Member

    Thank you Denise, for sharing that info with me. Good to know. :-) I read somewhere that the risk for BCC is higher if you got severe sunburns as child over tanning repeatedly as an adult. And like you said, when I was young I think coconut-fragranced baby oil was sold as suntan lotion...don't remember hearing much about sun screen back then. I do remember getting some sunburn as a kid, but not as bad as many others.

    I just have to remember that dealing with the treatments for endometrial cancer wasn't as bad as I though it would be, so have to consider that the same could be true for this one also. And hey, guess what? I just realized that the knot in my stomach is not as bad! At least for now. You guys always make me feel better. Thanks again everybody. :-)

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member

    Oh, Rita! I’m so sorry!

    (We’re on a little vacation, so I’m a little late to this thread.)

    I can totally see how upset you are because it’s your face! Prayers & more prayers for you!!

    I haven’t shared this yet…because I’ve only known about it for a week…and even at dermatologist’s office he declared, “Basal cell.” Well….no….it squamous. On my lower right leg. Worrisome thing …kind of weird, I had the appointment for a well check…the spot was one of several dry spots I was going to have him look at…in the 2 weeks waiting for appointment it became scaly and a little bloody. What?? So, I’ll be having Mohs surgery on May 10th.

    When I called to get the appointment, they said June. No, no, no! I’m not waiting til then! She said she had to schedule the more serious melanoma people first. I pleaded my case….I’m an immune compromised cancer patient! On a list of 10 reasons to get skin cancer, other than the obvious, is being immunocomptromised! Me, being that PLUS squamous (can metastisize! ) put me right up with the melanoma people! Then they found a spot for me on May 10th. Here we go….fighting again for treatment!

    I’m not upset as you are Rita, cuz it’s not my face! But urgency is warranted!

    I know lots of us take immunotherapy drugs and I want to warn them to be on the lookout for it!

    Glad they’re doing it sooner than later! I know you’ll be good! Like our other friends, I’ve know many to have them removed and successfully. My husband…same afternoon, had a basal cell removed from near his nose. Will have Mohs, also.

    The way I try to look at it….if you live long enough…this cr*p is gonna happen. And we survived the GYN cancer! We can do this!

    Love, love, love to you! ❤️❤️❤️, Alicia

    oh…yeah p, Denise….the baby oil…and we put iodine in it! And Crisco! OMG….crazy!

  • MoeKay
    MoeKay Member Posts: 493 Member

    Hi Rita, they must be running a special on Mohs surgery these days. I was recently diagnosed with a basal cell carcinoma also and will be having Mohs surgery. My surgery is scheduled for next Friday, April 22, which is the day after yours. Mine is on my scalp several inches from my ear. It doesn't seem like a BCC developing there would be sun-related since I'm not bald, so my scalp has never been directly exposed to the sun. Or maybe it's the non-sun-related variety. Who knows? When I was recently diagnosed with BCC, I never expected to read your post on your BCC diagnosis on this board. And then to see how many others are or have been in the same boat. It's very surprising. I know basal and squamous cell carcinomas are exceedingly common, with 5.4 million cases being diagnosed each year in the U.S., but I'm still surprised to read all the others who have or had this diagnosis.

    Rita, I also wanted to mention that my brother-in-law was diagnosed several years ago with something called cutaneous angiosarcoma of the nose. It is very rare, about 300 cases a year diagnosed in the U.S., and it's extremely aggressive. He had to have part of his nose surgically removed and rebuilt. When I initially heard about his diagnosis and treatment, I was extremely upset. But I could not believe what a fantastic job the plastic surgeon did with the reconstruction. You would never even know he had surgery, and the best news of all is that, so far, he has not had a recurrence.

    I'm confident that the ocular plastics specialist will do a wonderful job on your eyelid! Hang in there!! And kudos to Dr. Frederic Mohs!

  • Lyn70
    Lyn70 Member Posts: 214 Member

    Considering the quoted statistics, I shouldn't be shocked by the incidence of this skin cancer among us but I am! I know I was cautioned about sun exposure during chemo. I realize much of the exposure happened way before our treatment. I am very protective now but I was told childhood sunburns were most harmful. Too late for that! I was a redhead once and lobster red was my color every summer...no sun screen & no hat.

    Rita, Denise. & Alicia, we are here! You three have surgeries very close, two of you within a day of each other and Alicia it is good yours is scheduled for early May. May surgery, recovery and reconstruction go well. I am confident it will.

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member

    Oh, you’re so sweet, Lyn! Thank you!

    I haven’t really researched it much, but a dermatologist years ago told my husband…when he was having a squamous cell removed from his forearm…and I’ve read it elsewhere..that just the exposure is the problem…regardless of where it is, and it is not uncommon for lesions to appear on genitals.

    I think because chemo compromises our immune systems & then for someone like me taking an immunotherapy drug, it is more likely we will have them appear. I’ve had more than my share of sun, mostly from extensive walkinG…my legs always covered…but that’s where my lesion is!

    ugh!

    love to all ❤️, A

  • RainbowRita
    RainbowRita Member Posts: 72 Member

    Thanks all for sharing your experiences and advice. I know that when it came to the endometrial cancer treatments that the unknown always seemed harder to deal with than the actual treatments. So I am hoping that this will hold true with the BCC treatment also.

    I knew that BCC was the most common skin cancer, but didn't realize just how common skin cancer is. I read that more people are diagnosed in the US each year with skin cancer than all the other cancers combined. Good thing most skin cancers aren't life threatening.

    I will let you all know how things go on Thursday. It is going to be a long day for me, but hopefully will manage to post something on Friday to let you all know what was done.

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member

    I’ll be praying for you & MoeKay….as I do all of us on a daily basis!

    Rita, my best friend basically had to have her nose rebuilt after a skin cancer removal many years ago. They used cartilage and skin from other places…and she is just as beautiful as ever! It can be done! I know you’re scared and probably angry at the prospect and trouble of it all, but you’ve already proved how tough you are & I’m confident they’ll get you fixed right up beautifully.

    And thank goodness BCC isn’t life threatening!

    I’m a little worried about my squamous cell being so close to my shin bone, and that it changed so fast, but we’re catching it really early, so I think it’ll be OK. I’ve never had what I would call “beautiful legs” - like shapely, sexy, Carrie Underwood legs!…there’s not a thing wrong with them, but they’re not beautiful!!!…so, I’ve never worn short skirts and I hate shorts! If I had gorgeous legs that I was used to showing off, I might be more upset about the prospect of a big dent or scar!

    ❤️❤️❤️, Alicia

  • Maxster
    Maxster Member Posts: 102 Member

    I had a squamous cell cancer on my face. I used an immunotherapy cream called Effudex for six weeks. It is just as effective as cutting out the cancer and causes less scarring. It's annoying for six weeks but maybe you can look into it.

  • RainbowRita
    RainbowRita Member Posts: 72 Member

    I read about those creams for some skin cancers and they work well on some types. Too bad I can't use it for my eyelid. 🙂

    Thanks Alicia, and to everyone else who has posted words of encouragement. I know I will get through this. Just have to "tough it out" one more time. That being said, I will be glad when it is next week. 😉

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member

    We are here for you. ❤️

  • MoeKay
    MoeKay Member Posts: 493 Member

    I inquired about other treatments including creams and was told that at least for basal cell carcinoma the lesion needs to be small and superficial, which mine is not. Also, I read that they only use the creams for low-risk areas, which would likely rule out the eyelid. Very happy to hear that the Efudex worked so well for your SCC, Maxster.

    Thank you, Alicia, for your prayers. Wishing you and Rita and anyone else with upcoming surgeries or other treatments for these skin cancers a textbook perfect outcome!

  • RainbowRita
    RainbowRita Member Posts: 72 Member

    Update: Good news! 😀

    So I had my eye lid cancer surgery yesterday and everything went better than I anticipated. The Mohs surgeon was able to obtain clear margins on the first round. So that was a relief. When the oculoplastic surgeon took off the bandage he told me that about 50% of my eyelid had been removed. Now that I was surprised to hear as I didn't think that much of my eyelid was involved. However, Dr. Kim said he was confident he could give me a good result and explained what he was going to do. Basically he freed up the skin from the temple area from the tendon in that spot so that he could pull the skin over to bridge the gap. He said fortunately the the skin in that area is pretty flexible. He used dissolvable sutures, so no "train tracks" and just two incisions about 1/2" long -- one at the edge of my eye and the other about the middle of my lower lid in a bit of a "s" shape.

    I was quite surprised and pleased at how good it looked. I'm sure once every thing heals it, the scars will be barely noticeable. I have some swelling and a "black eye", but the pain was minimal. More discomfort than pain, and some scratchiness from the sutures rubbing a bit on my eye if I look around too much, but all in all, things went a whole lot better than I thought. So thanks to all who offered words of encouragement and reassurance that things would go well. I hope everyone else who has something similar to undergo has as positive of results.😊

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member

    Great news, Rita! I’m soooo glad it went better than you hoped! It sounds like they were extremely careful, precise, & thoughtful about your surgery. Exactly what you needed! Your attitude is so wonderful! I’m glad it’s behind you!

    Thx, Maxster for the tip about the cream. If mine was on my face I would surely look into it!

    You ladies are so sweet and supportive. Thank yiu!

    I hope we hear back from MoeKay soon! With an equally good report!

    ❤️, Alicia