Wilma is a skin cancer specialist nurse, here to answer your questions about different...
I have just been diagnosed with this type of cancer in my left eyebrow and am waiting for app with Moh's surgeon. Google has not been very reassuring about possible size of wound and final outcome. Would appreciate info or advice from anyone who has experience of this. Apparently it is very rare.
Hi Bio and a very warm welcome to the online community
I have not heard of this type of skin cancer before but after a quick search in this group I found that Nellieson and Deniseanne both had the same diagnosis last year. Hopefully, they won't mind me tagging them into my reply to you and they'll be able to tell you what to expect.
You may also like to take a look at this thread which discusses Microcystic Adnexal Carcinoma
As you have already discovered it's best to stay away from Google as you'll always get the worse-case scenarios and not the ones where everything went according to plan!
Do let us know how you get on
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Thanks for tagging me!
Like you've said, it is incredibly rare, buy I've been reassured that it's metastatic properties are minimal and the prognosis is good.
In the end, I had two surgeries to ensure that there was 1cm of clear cells around the tumor that was removed. I think the important thing to remember is that whatever the size of the scar and whatever the amount removed, it means it's not in your body anymore. I felt so nervous and anxious about the whole thing, but actually, I've come to love that side of my face more than the other (it's like I've been given an eye lift!!) As I look younger on that side LOL.
Have faith in your consultant and in the type of procedure; they won't leave anything to chance and you will be seen regularly to check that nothing has changed. 1 year on, I'm still seen every three months by the surgeon and thanks to the department, they are going to tattoo a new eyebrow on for me to save me from having to keep drawing it on!
How long has it been since you got your diagnosis?
Thank you so much for your reply. I was first diagnosed as BCC but the MDT did not agree and I had to wait a further 2 weeks for them to re examine the biopsy slides. I was just told last Thurs 23rd. I wasn't unduly worried to start with but then I started to Google and saw some wounds and read that someone, who had this on eyebrow, like me, had died when it had spread to brain stem. Have been a bit freaked since. I am concerned that operation will affect my eye or my sight as it is so close. It is difficult to imagine that they will be able to remove it all. It measures 3cmsx2.5cms so it is a good size and it would seem that Mohs surgery can take away at least 4 times the size showing on the surface.
I am pleased to hear that you have had it successfully removed and that follow up is good. I had been joking about getting my eyebrow tattooed back in so it is surreal to hear that it happens.
I am waiting for appt to see surgeon under the 2 week rule so hopefully that will happen soon.
Thank you again for your reply as it has given me reassurance. Please let me know if you can think of any questions I should ask when I see surgeon as my mind goes blank in these situations. My daughter will come with me and we plan to make a list.
Thank you again
Thank you so much for the welcome and the tagging. Have already had reply from nellison and have been reassured. Will keep up to date with developments.
You're welcome Bio. I'm glad to see that you've already had some great advice from Nellieson.
I saw in your reply to her that you were asking what sort of questions you should ask. You may find this information on questions to ask about treatment useful. You could print it out and take it with you when you see the surgeon. Not all of the questions might be appropriate but you can cross those of the list.
Yes, Dr Google is the worst of the worst. When I first found out I didn't really know where to turn as the first nurse I spoke to had, inevitably, never heard of it.
I booked an appointment with my GP of all things and said "I've stupidly gone online and I don't understand anything from these medical journals, help!" He took the time to go through the articles I'd found to explain that only two people in the world had a link between a MAC and death, and even they weren't clear links. The chances of it reoccurring being even slimmer, I felt reassured that it wasn't to be worried about. In addition, it's incredibly slow growing and it is often argued that it shouldn't be classes as a type of cancer at all. If you imagine that there are 3 types of tumor/skin cancer; 1 does nothing and can sometimes be left unless it's a nuisance, the 2nd has the potential to go elsewhere, and then the 3rd being the one you don't want, this particular type of tumor/skin cancer sits somewhere between the top two, with a fine line between the do nothing and the MAC.
I know it's scary due to the proximity of the eye. I did make this joke to my surgeon and asked if there was a chance I'd lose my eye. He had said due to the size and location of mine I should be ok. I think that as I said before, I can't even begin to imagine what it would have felt like had I needed to lose my eye, or in a worse case scenario. But honestly, if it was me or the eye, I think I could live with them taking it out.
I felt so many horrible things. It's so impossible to not let your mind wander. But it's really important to focus on the facts and not the what if's. There's no reason to not ask about the eye, but as is with the nature of the surgery, it's whatever they find when they get in.
I really hope you get seen soon and within the time, it would be awesome to get the whole thing bookended as soon as possible for you so you can move on and crack on with life.
Thanks for reply and especially for reality check about the eye anxiety. If I don't hear by next week, I have to phone consultant and chase it up. I will certainly do this. I am less anxious now but just want it done. Have holiday booked for September so would like it all sorted and hopefully wound healed by then. Doing things to keep my mind off it. Seeing friends and I've cleaned the patio, which was a big job. Daughter is pregnant after a few miscarriages so she is taking up some of my time and giving me something good to look forward to in November. Will keep you updated about appt and time line for op.
Really appreciate you taking time to get in touch. It is very reassuring at a time of great anxiety.
Hi there, sorry to be a bit slow in replying - it''s half term and I've been doing a bit of grandchildren entertaining!
It looks like Nellieson has given you some very comprehensive advice. My carcinoma was in a different area, between my upper lip and my nose, so her advice is probably more appropriate for you.
On a general note, I concur with everything Nellieson has said - yes it is scary, and I have to be honest and say that the day I had the tumour removed by Mohs was not the most pleasant. My tumour was quite large and the surgeon was trying to save my lip, so it took 3 attempts to make sure it was all gone. It was not painful, but it was quite stressful and I was very tired at the end of a long day. But the positive thing that kept me going (apart from the wonderful staff at the Churchill in Oxford), was the knowledge that the whole thing would be completely removed.
I had to have 3 reconstructive surgeries over the next 4 months. There was quite a large hole and I did lose an area of my lip, and had a section of lower lip and chin moved to fill the gap. Fortunately I had the best care, I am just coming up to the 2nd anniversary of my first visit to the doctor about a growing but painless lump in my face. I have one more check up in August and then I will be discharged.
I have nothing but admiration for and gratitude to the incredible team at John Radcliffe in Oxford, particularly to my surgeon Mr Andy Pay. I did go through a difficult time in public when I was having my procedures, with my various swellings, bruisings and dressings! But I am out the other side, all clear, and my friends and family are amazed at how well I look considering what I have been through. And I met someone few months ago and mentioned that I'd had a tumour removed - she said 'Where from?'!
You will get through the other side, it really helps to have supportive family and friends - and grandchildren! I wish you all the best, and it does make a difference if you stay positive.
Thank you for your post. It is obvious how rare this thing is that there have only been 2 people on here with personal info on it.
I had calmed down a bit until yesterday when I got a copy of the referral letter to the Mohs surgeon and my GP. In it was, as expected, the request for treatment for the Microcystic Adnexal Carcinoma but also asking to check lesion in the corner of the other eye as he suspects basal cell carcinoma. I had pointed this out to him at my appointment and he said that he would mention it to surgeon. He didn't say that he thought it was basal cell. A bit of a shock and don't want to have to deal with that too. Best not to jump to conclusions I suppose but it is hard not to.
I have holiday booked for September and wonder if I'm being optimistic about whether I will feel like going if I am still undergoing plastic surgery. Have to pay by end of July so I suppose I will know then. Hate to let friend down but can't be helped.
I too have grandchildren but am free on half term as one dad is a teacher and another can work from home. I do the school pickup 2 days a week and wonder if I'll feel like doing that in dressings etc and how the children will react.
I have checked out my surgeon and he has an excellent reputation. I just hope that I don't have to wait too long to see him and can get on with surgery.
Thanks again for your post. Will keep you up to date on progress.
I was just checking in to see how you are doing and if you have your appointment date yet?
I was thinking about you yesterday! I went and had an appointment with an ocular specialist and I'm now on a waiting list to have revision of my other eye to try to creat some type of symmetry before I have my eyebrows tattooed on!
Hope you're both well x
If I'm one of the people you're referring to then I'm very well thank you.Glad to hear things are moving for you and do keep us informed about how things go.
I was pleased to hear about how thorough the medics are when treating this wierd tumor and that they take your appearance seriously afterwards. I have appt with surgeon next Tues and have a long list of questions to ask. I am hoping that I won't have to wait too long after that for surgery. When they thought I had basal cell they told me that wait would be 6 months. Hopefully I won't have to wait that long. Just want to get started with treatment.
Getting eyebrows tattooed still makes me smile. Can you choose colour? I'm going quite grey so that could be interesting.
Please keep me updated and I will post info on my appt next week.
It's so great you're being seen next week. However long you have to wait, you've just got to go through the motions. You'll worry and catastrophise (spelling?!) but apparently, thats all part of the fun!
Soooo as far as the colour goes, that a yes, they basically match the colour of what's left and then whack it on! I've been drawing in my eyebrow for a while now so that I can take a picture of it exactly how I want it as the last thing I need (I'm a teacher) is to go into school in front of a load of 15 year old boys looking like Ronald MacDonald
If I could figure out how to add a picture, I'd show you!! If I ever manage it, I'll pop one on
Looking forward to hearing about your appointment next week,
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