I describe myself as an ‘accidental advocate’ for skin cancer awareness. I was first diagnosed with skin cancer in 1995, basal cell carcinoma. I’ve had numerous other basal cells since then, and one squamous cell. In 2015, I made a Facebook post detailing my most-recent skin cancer surgery, along with photos of my recovery. The post was shared globally and picked up by numerous media outlets, which put me on the path that I’m on now – spreading awareness in hopes that others can avoid having to go through what I’ve been through. I’m thankful for this site, as skin cancer can be a lonely cancer, and I love how this site not only helps us learn more about skin cancer, but lets us know we aren’t alone in our battles.
I wanted to be a dietitian because my boyfriend at the time mentioned I was really good at staying healthy and trying to help him and my family stay on the right track. I laugh because I know God let me hold on to that unrealistic career goal and Mr. not-so-right before he hit 2 birds with 1 stone and pointed me to a dermatologist. 4 surgeries later, almost 100 stitches on my face, and surrounded by 40,000 college kids, my life perspective changed dramatically. I never thought I would be an advocate, until I noticed saying I was “in a knife fight” or “My cat got me again” really didn’t justify the massive scar down my face, so I started to tell the story. More people listened, more people related, and I started to receive more messages that ended with “I told my friend to stop tanning and showed her your pictures.” So, I’m here because it takes one voice to connect with others.
Something similar. I was diagnosed with advanced squamous on my gace in 202 – three year old at home – full professorship. First Mohs with plastic surgeon closing. 156 internal and external stitches. A few weeks and they barely noticed.
Round two during unexpected divorce with little support. Success, but was told couldn’t do grafting after this, do or tissue would always look like the scarecrow.
Hi @edugatr! When we think about the struggle to get through a new diagnosis and treatment, other aspects of life that are stressful can make it even harder. I am glad the plastic surgeon was so successful, but sorry to hear the options are now more limited. How are you doing with this third round? We are thinking of you! – Nina, SkinCancer.net Team
I was an avid tanner (outdoors and tanning beds) for more than half of my life by the time I was diagnosed with melanoma in 2007. Since then, I have had three basal cell surgeries and countless precancerous spots burned from my face and upper body. I am now in the stage of life where Efudex has entered my vocabulary and become a huge part of my life. Treating my chest once yearly for recurring precancerous spots, I have begun to become more vocal about my struggle. This summer, I had the displeasure of using Efudex on my face. There is just no other experience like this topical chemotherapy. I posted two videos on Facebook detailing my experience and urging others to practice sun safety and wear sunscreen regularly. My videos led me to this wonderful opportunity! I have since had many people tell me they have either stopped tanning or have added sunscreen to their daily routines. Every little bit of advocacy helps.
I’m so glad you found us! Efudex is a difficult treatment, without a doubt! I’ve used it four times and, yes, it can make you nauseated. I’m so sorry you have had to deal with family members who are insensitive. People can really be something else. I’ve written a few pieces on using Efudex. This one might help you out. Please keep me posted on your progress. We are here for you any time! https://skincancer.net/life-with-skin-cancer/my-journey-with-efudex-in-photos/
Hi! I’m really glad I found a current group of people going through the same thing as me! I just finished a 14 day treatment on my face with Efudex. I have 12 more days to go on my arms and hands. I have a high tolerance for pain, but this is over-the-top miserable! I’m not sure I would have done this if I had known it would be this bad. The best way to describe the feeling on my face is like having a heavy mask soaked in hot sauce pressed down onto my face! My arms and hands itch like crazy, even after taking Benedryl. I’ve read that my face should be healed within a week or two. I use Aquaphor on my face after I shower and in the morning after I wash my face. I can’t go out in public because my face looks like a package of hamburger! Fortunately, I am a preschool teacher and I have two more weeks off before I go back to work again. What I’m going through seems pretty typical, but at this stage of the game, I’m feeling pretty down. My doctor never discussed with me what would happen, and he never even wanted to see me anytime during this process to make sure I was reacting properly to the medication. I researched online and saw many images and read many stories of people’s experience, but still chose to march forward! I’ve been in contact with the nurse and she said I should be seen a month after I stop the treatment on my face. She told me to use the Aquaphor and to take the Benedryl for the itching. I’ve been off the Efudex on my face for almost 48 hours and there has been no change in the healing process on my face. My hands and face have reacted well from the Efudex. I guess I may still be having new eruptions.
Is all this normal? Am I overreacting? I guess not knowing is causing me to feel down. It seems weird that the dr would not want to see me. Even though I read up on Efudex before I started the treatment, I just didn’t expect to feel so lousy. Any comments would be appreciated!
Hi there! Oh my goodness! First let me say, you sound like you are reacting in a very typical way. If you just stopped two days ago, you are still in the healing process and will have some hard days ahead. As your skin sort of withdraws from the cream, your skin will get really fired up. Keep cold compresses handy. I like to put mine on a layer of plastic wrap so it doesn’t stick to my raw skin. I agree with the Benadryl. It can come in handy with helping you sleep as well. Keep yourself hydrated. I use Vanicream lotion during healing—be warned any lotion may sting like bees when applied after a shower.
I’m glad you have those two extra weeks to recover! I’m also a teacher and treated my face last summer. It’s tough enough, but having those babies have to see it makes it more stressful. I treated my lips this spring and answered a lot of questions from students for sure.
You definitely are not overreacting. Doctors seem to tell patients very little as far as reactions go. We all react at different rates and side effects vary greatly. You really sound like you react similarly to me. My doctor also does not see me until I have healed. But do not feel like you are restricted from asking your doctor about concerns along the way. Your nurse or doctor can help put your mind at ease when you have concerns.
You will make it through this. I assure you! It is VERY normal to feel down. This is a huge blow to your system and impacts your self esteem. We are here for you. If you search “Efudex” here at skincancer.net, you’ll find several pieces about the treatment and tips. Keep us updated on your healing! You might want to join the Facebook support group I’m a member of. You can find it by searching “fluorouracil aka Efudex” and clicking “join.” It’s a wonderful community! April, Skincancer.net, Moderator
Thank you, April! Your comments were very reassuring! I found the Facebook page and look forward to being a part of the group. The support of others who have experienced what I’m going through has already been beneficial.
Hi! I have a couple of questions about the recovery phase. As I posted yesterday, I finished my two week course of application of Efudex on my entire face last Wednesday. My chin is hard and thick with scabs. My forehead is slowly flaking, along with a few spots on my cheek. I have several spots all over my entire face that just seem to be extremely red. They don’t look like they came all the way up to the surface of the skin. The spots are just very red. Does that mean that the two weeks of applying Efudex may not have been long enough? Also, this may be a silly question, but is there a possibility that my face could not heal up properly and all this redness could be permanent?
Thank you for your support!
I was diagnosed just three weeks before Christmas with sebaceous carcenoma. Wonderful! After the pathology confirmation, my next appointment was to be about the middle of January. I’m hardheaded and found a dermatologist/skin cancer specialist, and now have a second surgery on my cheek to try and remove the remaining cancer cells. My question is: how in the hell will they know that, and if it has spread? What I have is rare, difficult to treat and very aggressive. Maybe I messed around too long getting the thing cut off, but here I am anyway. Just wanted to know if this may be treated, although I don’t know yet the stage it’s in. Thanks!
Hi @wseverin, this is a really difficult diagnosis to receive at any time, let alone leading up to Christmas. I’m very glad to hear you went after another option to be seen more quickly. While I can’t share any medical opinions, I can say that our members often talk about getting clear margins to ensure that the cancer has been removed fully. There are some other tests that can be performed if one is concerned about spread. I’m sharing a couple of articles about them here: https://skincancer.net/clinical/what-is-sebaceous-carcinoma/ and https://skincancer.net/diagnosis/procedures-tests/imaging/. Please let us know how things proceed for you. We’re hoping you hear an all clear on this one!
– Nina, SkinCancer.net Team
nina, they cleared all of the sebaceous carcinoma if march. I thought I was finished with it. Guess again. In almost no time two more have shown up, about two months. Here I go again. This time on my eyelids. So, I have an appointment in two weeks for removing those two.
@wseverin, like a lot of folks here, it sounds like you really can’t count on there ever being an end to the spots and treatments. My hope is that this treatment is all you have for a while, unlike last time where you didn’t have a break. How are you feeling about the eyelid surgery? I hope you’ll let us know as things continue. – Nina, SkinCancer.net Team
Thank you Nina. No one in my family had cancer. I guess I’m the lucky one. My operation, whatever to remove a 2″ diameter portion of my face is tomorrow morning. Great. I’m a musician, that’s all I need. Won’t look good on stage. But, what can I do???
Hi. Yesterday I went to the derm for a post appointment check up. She had removed some “warts” from around my eyes and wanted to follow up on the need to remove some others. Well, turns out one from my eyelid was a basal cell Carcinoma. This freaked me out because it was a surprise to her as much as me. We decided to remove the remaining warts under my eyes to be safe. I am waiting for those results.
Is this common that the doc was so surprised? I’m a bit freaked out because I’ve never had more than “pre cancer” scares before and because the office never called me to let me know.
Finally, after hearing the news, I zoned out a bit and forgot to tell her about a small lump under my armpit. Which I’m planning to call about. Of course I’m fearing the worst and would welcome advice as I wait for the latest results. Thanks!
Hi @sandieann, while I can’t say how common it is to have a surprised reaction from the derm, I can say in this community we’ve heard about it somewhat often. It sometimes makes you wonder whether there really is an exact science to identifying these spots – sometimes they don’t look anything like they’re supposed to. I’m glad that she caught them in the wart removal process, and that they’re being careful about checking them all.
It’s also completely natural to forget all you wanted to discuss after the shock of hearing the results! In future, our advocates find it helpful to either write things down, or have someone there with you to be a second pair of ears.
Of course we always imagine the worst, but on the positive side, you’re being persistent, paying close attention, and educating yourself! That’s not easy! I wanted to share an article about other ideas for dealing with the wait and the anxiety: https://skincancer.net/q-and-a/anxious-exams/.
Thinking of you and please stay in touch! – Nina, SkinCancer.net Team
I’m so glad I found this site.. I’m 63yrs and had Squamous Cell on my upper lip..had the Mohs surgery. Thankfully all went well and its healed very nicely. But I’m freaking out about more cancer coming.Every day I check my face and of course every spot has me wondering…My 3mo check is coming in July.. Does it ever get easier???
Unfortunately, no. At least for me. I had 3 sebaceous carcinoma removed, 2 malignant. I thought I was finished. Guess not. Two more have deposited themselves near my eyes. Kinda reminds me of a Whitesnake song. “Here I go again on my own.” I’m going to be 63 this year. Good luck Butterfly 55. Prayer helps. This stuff is a pain!
Hi @butterfly55 and @wseverin! As wseverin said, the cycle of recurrence can be lonely and painful. It’s different for everyone, and some folks have more recurrences than others. This article is an interesting one because it compiles a bunch of perspectives on recurrence fears: https://skincancer.net/life-with-skin-cancer/advocates-mental-health-recurrence-risk/. I hope you won’t have any new spots at your appointment, and if you do, that treatment will be smooth. If you can, let us know how things go. – Nina, SkinCancer.net Team
I was 43 when I was diagnosed with melanoma. I’ve searched and searched online for information and only found doom and gloom and just sterile (medical) information. I happened upon this site and it was EXACTLY what I was looking for, REAL people talking about living with skin cancer. I found an immediate sense of community. I read as many articles as I could. I identified with almost everything in the articles and would actually tear up reading them because I was thinking, “Oh my gosh I am feeling the same way.” I cannot put into words what this community/site has meant to me. I consider it an essential part of my life now. Thank you from the bottom of my heart.
Happy to be part of a community that we all probably wish we didn’t have to join!
I was diagnosed with melanoma 31 years ago while six months pregnant. After two diagnoses, surgery and lymph node removal, physical therapy to reuse my arm, delivering my baby while having an emotional breakdown during delivery, a third pathologist said that I never had melanoma in the first place – just a mole that changed due to pregnancy.
However, seven years ago, melanoma struck again.
Now I am looking at a diagnosis of sebaceous carcinoma
My mother died of Merkel Cell Carcinoma 18 years ago.
Waiter, genetic testing, please! I am worried that my children and now grandchildren will have to face this scourge.
I suntanned like many other people of my generation (I’m in my early 60’s) but certainly not enough to warrant all this.
When I was first diagnosed in 1988 there was no internet to search for information. I lived in a small town that didn’t even have a dermatologist. A surgeon removed everything, but he did not like to be questioned – as he put it “90 percent of my patients are dumb as trees.” We live in a different city now – I don’t think that surgeon is even allowed to practice anymore.
Now I Google with the best of them. Probably not a good idea, but when your doctor’s office calls you ten minutes before the office closes, tells you that you have a kind of cancer you’ve never heard of, says you may have a syndrome that is related to colonrectal cancer, and that you need to go for all your checkups immediately, then hangs up, what’s a girl to do?
I’m thankful to whoever began/runs this forum already!
Mare, I’m 62 and was diagnosed with sebaceous carcinoma about 3 weeks before Christmas. 2 malignant, 1 not. Since then I have been cut on no less than 5 times after the first three. Fortunately, I keep an eye on this problem day in/day out. And, again, I can see/feel more bumps or whatever coming on again. I seem to be the only one blessed with any kind of cancer, but working in the sun since 12, until a couple of years ago, well, I didn’t listen to Mom and cover up. I laughed. But now I picked this fight, and with God’s help I’m going to win. Never been licked in any skirmish, and I ain’t starting to lose now. Far too many of my classmates, over 20 in a grad class of just 100 have succumbed to this vile disease of whatever stripe it was. I won’t let it get me! You shouldn’t either. Medicines help, but positive thinking and doing along with faith will beat most anything you can dream of. And I think I see in you that will to succeed. I have 4 daughters and son in laws with 13 grandchildren. Can’t give up, gotta stay for them and my wife.
So we are the same age! I didn’t listen to Mom either – but from what I was told, this kind of cancer is genetic and not sun-related – so I don’t have to feel guilty for this like I do for my melanomas and basal cell cancers.
13 grandkids – that’s a lot to live for! I just had my first grandchild and he has been a wonderful diversion from this diagnosis.