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CLL and Mohs procedure

210savannah profile image
43 Replies

i have CLL and doing great. On Ibrutinib since Feb 2019. Was recently diagnosed with basal cell skin cancer on the bridge of my nose. Also have another suspicious spot on the end of the nose. Going to have a Mohs procedure on the bridge coming up Has anyone else been through this?

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210savannah profile image
210savannah
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baq724 profile image
baq724

no treatment here yet, but having Mohs on March 17 to Basal Cell spot on forehead. Doctor told me to plan on being there 4 hours as they take layers at a time and look under the microscope until they find a clear sample. Doctor said I’d be ok to drive home after. They know I have CLL, so I am sure they will take all the precautions they need to. Here is a link explaining more mayoclinic.org/tests-proced...

210savannah profile image
210savannah in reply tobaq724

Thank you! I have not gotten my appointment yet. Just a little nervous about it being my nose and not knowing how many layers 😩😩 I hope all goes well with your procedure

sdowney8600 profile image
sdowney8600 in reply to210savannah

I haven't had treatment yet--still on W&W. But I found a basal cell in the crease of my nose and when I had Mohs, they only took one pass and he said I was good after that. Then of course something appeared to be growing back and I went to my dermatologist and she thought it was a basal cell again. Turns out it was just scar tissue. The Mohs doc just gave me a shot of steroid to help and that seemed to work fine. Thank goodness. All has been good since.

LG1948 profile image
LG1948 in reply to210savannah

I understand completely. Not my nose.!!! Anywhere but my nose!!! But I had a friend who had this procedure and it was fine. Also, when he did it, they only had to do it once it was only surface. I hope that’s true for you as well.. I’m seeing a dermatologist Tuesday for a body check. Good that you went and had yourself checked out. Let us know how you do. Hope all goes well.

210savannah profile image
210savannah in reply tobaq724

Are you taking treatment for CLL?

baq724 profile image
baq724 in reply to210savannah

No. So far I am 9 years treatment free. Only issues have been some pre- skin cancer and this is my first basal cell. I hope your procedure goes well. Im not too worried about mine. The biopsy healed up nicely.

Curious79 profile image
Curious79 in reply tobaq724

Yea, easy peasy.🙂

lexie profile image
lexie

I had Mohs on the bridge of my nose in 2022. The original biopsy removed the BCC entirely so the the Mohs done at OSU showed no BCC with only 1 layer removed. I got stitches and drove 3 1/2 hours home. Since I continue masking no one saw it. But the mask was uncomfortable for the next 2 weeks, tight against the bridge, so I kept my trips in public brief. Glasses worn with the bandaging.

Sunfishjoy profile image
Sunfishjoy

I just had a MOHS for basal cell three weeks ago. Tiniest spot was under my eye. Very sensitive area. I’m healing well now and expect a slight scar if any to remain. My onc had me stop Brukenia seven days before and seven days after. Was a grapefruit orgy for me!

210savannah profile image
210savannah in reply toSunfishjoy

Thank you for your reply! Glad you’re doing so well!!

Vlaminck profile image
Vlaminck

I had mohs this past June for a squamous cell carcinoma on my hand. Don't know whether the biopsy got it but my Mohs doc only took one layer. She didn't stitch and I had this rather icky looking open wound on my hand that took quite a while to cover over (was nearly an inch in diameter) and still have a faint scar -- but all on my hand fortunately and not my face.

baq724 profile image
baq724 in reply toVlaminck

I’m wondering if the same thing will happen to me. It’s been 3 weeks since my biopsy and it’s healed with no sign of it growing back. I guess we will see in a few weeks!

210savannah profile image
210savannah

I’m glad for you! Worried about it being my nose!!

MrMidnight profile image
MrMidnight in reply to210savannah

I had Mohs surgery for a basal cell carcinoma on my forehead several years ago. The dermatologist didn't think I needed to stop Brukinsa, or even the blood thinner I was taking. He said he cauterised blood vessels as he went.

The scar was longer than I expected but now I can't even find it.

thb4747 profile image
thb4747

I’ve had MOHS surgery 3 times. No particular issues. I’m not sure what you’re asking.

210savannah profile image
210savannah in reply tothb4747

Just how everyone did with CLL and/or being treated.

thb4747 profile image
thb4747 in reply to210savannah

I had no difficulty. As others have said it just takes a lot longer. I continued taking Venetoclax daily while I healed. Because I have CLL I have routine checks with my dermatologist every 4 months. This is important as potential skin cancers can be caught early and frozen with liquid nitrogen. Go well.

hhk50 profile image
hhk50

Yes, I had MOHs on a cancerous spot on the top of my head while taking Ibrutinib. I was not required to stop the Ibrutinib and the surgery went as planned.

ivy39 profile image
ivy39

Hello Osvannah. I have had Mohs twice for basal cell carcinomas on my nose. The actual surgery took mere minutes, what does take time is the wait for the lab results where the initial excised sample is examined. That took on average about 1 hour. If more needs to be removed, add another hour, etc. The initial freezing is not painful, more uncomfortable. The surgery is then totally painless. I also had a subsequent (same day) skin graft, again painless. You go home the same day and stay indoors for maybe 5 days to keep the scar drom getting infected. Good luck!

AFFS0106060 profile image
AFFS0106060

Received MOHS surgery for Squamous Cell on head, literally a couple wks before my CLL diagnosis. Was pretty simple. As someone stated about 3-4 hrs, it all depends on getting it all. Will be starting Calquence shortly and unfortunately expect to see more of these procedures down the road. Yes I could have drove myself, buy spouse was willing to. For me the hard part anytime I laughed or smiled, it moved the skin on my scalp. The nose is a little more delicate and may not heal as quickly as other areas. Follow their directions for skin care and don't be afraid to ask questions. Best of Luck, hope they get it all on the first attempt.

mbeck5 profile image
mbeck5

Untreated CLL here also and have had 5 Mohs plus numerous "scrape and burn" procedures for squamous and basal cell skin cancers over the past 25 years. Anyone dealing with these skin cancers may want to ask their doctors about taking 500mg of niacinamide twice a day to reduce the incidence of these skin cancers. The key word here is reduce. Savannah, hoping your procedure goes well and is a one pass!

Lil0ppie profile image
Lil0ppie

Yes. I have CLL and had a melanoma removed from my scalp. Given the size I didn’t have mohs. In all likelihood they’ll ask you to stop your CLL med for seven days before and after, or maybe not given the nature of mohs. But there shouldn’t be any issues.

msbypass4cll profile image
msbypass4cll

I had Mohs surgery on the tip ofmy nose for a basal cell bump. I ended up getting reconstructive surgery as the divot was pretty deep. The plastic surgeon pulled some skin from right cheek over the Mohs site, which left a scar from the bridge of my nose to the tip. No one notices it but me.

Playtoday profile image
Playtoday

I just had Mohs surgery 3 days ago for squamous cell on my cheek. 12 years ago I had a similar procedure on same side of face near temple. I have had no complications. I attribute both of these cancers to Texas sun. I am fair-skinned and have sun damage. I am aware that skin issues are possible side effects to my medication. (I am taking Calquence.)

I was diagnosed with CLL in 2015 and have been on medication since 2019. Thankfully, I see a great hematologist-oncologist and am in good health. Best wishes!

LaneOShea profile image
LaneOShea

good morning - in my 13th year of diagnosis I had a mohs on my shoulder, where my childhood vaccine was. As scary as it was to me, it was actually fine. I was lucky with just one “cut,” The healing took quite a while because of Celia (that’s what I call my little friend CLL) but all is well and I have a faint Popeyes scar. I was given an antibiotic and a Xanax helped calmed my jitters. I’m sure you have a great surgeon and they know about your CLL. Follow their follow up procedures exactly …. Which is rather our mantra. You got this!

ChattahoocheeBoy profile image
ChattahoocheeBoy

I constantly have dermatology issues needing biopsy and surgery ( due to long time sun exposure catching up now)…..still on W & W 5 years but no known issues having skin cancers removed. Good luck!

luvdog profile image
luvdog

I had MOH procedure one year ago on my forehead--entire procedure and recuperation were very simply-- The doc did such a great job that you can not even see where this was done. Good that you are taking care of this. I have already scheduled for a yearly body skin check with my dermatologist--- just to stay on top of things.

DocBob profile image
DocBob

I had a Mohs surgery two years ago on a portion of my eyelid.

It's a delicate operation but good surgeons wherever you live (if you live in a decent-sized city) will do a great job. Don't sweat it.

You'll be glad you're doing this procedure. It won't affect your CLL treatments at all.

Jmil2 profile image
Jmil2

Yes. I had a tumor removed from my face by Mohs surgery. Due to CKL, I'm a slow healer, so I still have a bruise on my face.

Braveheart19 profile image
Braveheart19

I have CLL I’m on watch and wait! In mid December I was diagnosed with a Squamous cell carcinoma on my arm which I had removed early January as it was growing fast and it was sent for biopsy. Because I have CLL the dermatologist sent me for an ultrasound on my neck to check the cancer hadn’t spread to my lymph nodes in my neck. The radiographer was very thorough and my lymph nodes were around 1cm which was no change from the last scan so no worry there. However he discovered two lumps one each side of my thyroid gland. I was sent for a biopsy, they took 5 biopsy samples from each side of my thyroid which were classed U4 on the right and U3 on the left. The team at York had a multi discipline team meeting to discuss the options and decided I needed surgery to remove the right lobe of my thyroid and also to include the left side of the isthmus which I am to have early March. I’m hoping that I don’t need the thyroid totally removing but they won’t know until the surgery.

However the good news was the biopsy from the SCC turned out to be a well differential keratoacanthoma like squamous cell carcinoma which is a low grade skin cancer and removing it is entirely curative if all margins are removed which mine were. In the telephone call from the consultant she told me because of the CLL I am more at risk for developing these which no one had ever told me before.

But the main benefit to me is that I wouldn’t have known about my potential thyroid cancer if it hadn’t been for the SCC on my arm and the speedy actions of the consultant dermatologist. So well done NHS!

nvrbeold62 profile image
nvrbeold62 in reply toBraveheart19

I'm glad you were able to get that taken care of promptly!

I was also really surprised to see that you had never been advised about the increased risk for skin cancer for CLL patients. I must have been told this no less than a dozen times throughout my watch and wait period (about 4 years). I was told this by my hem/onc immediately upon my diagnosis and it was mentioned during several routine monitoring visits about the importance of doing regular skin checks. I believe even my GP was aware of the increased risk.

210savannah profile image
210savannah in reply tonvrbeold62

Oh yes I have been told the risks! I go twice a year for skin exams with dermatologist. This is the first time I have actually had a skin cancer, however.

davidgrush profile image
davidgrush

Twice. One on the left side of my face for basal cell, and another on the left side of my forehead for squamous cell.

krperez profile image
krperez

I had Mohs surgery once on my forehead, and it was easy enough. The tricky part can be, depending on the location, how to bandage it until it's healed. Th

krperez profile image
krperez

So sorry! (I pressed "Send" accidentally before finishing.) The doctor and/or nurse will bandage the site(s) and explain to you how to do it for yourself. Wishing you a quick healing!

TartanAlum profile image
TartanAlum

I am on Calquence. Had MOHS surgery for a basal cell carcinoma on my forehead in October. No issues whatsoever. Did not change any of my meds prior to or after the surgery. (After the initial biopsy, the surgeon only had to remove one layer, but I don't think more extensive surgery would've been an issue either.)

srdh50 profile image
srdh50

have CLL and on acalabrutinib. Had a squamous cell cancer removed by mohs a few months ago. No issues. Best of luck.

210savannah profile image
210savannah

thanks everyone for your positive comments!!! You e helped ease my mind. I will keep you posted on the procedure.

66moisture profile image
66moisture

Oh yeahDiagnosed cll jan 2015, ibrutinib 2017...still going strong. Have had 8 mohs surgeries in the last 7 years. No side effects from surgeries or drugs taken to ease pain and help cure wound. Also...went thru co2 laser surgery, photo dynamic therapy & blue light. All for Basel & squamous cell skin cancer. STILL HERE.

210savannah profile image
210savannah in reply to66moisture

Yea!!! Thanks for your reply and best wishes to you!!

BurtJason profile image
BurtJason

Hello. I had the surgery on the bridge of my nose last October. I’ve had several surgery but this was the worst. I work in the food service industry and missed almost 3 weeks of work.

They got it all on the first try and it wasn’t too bad. The stitching the wound up tight was a bitch. I had the anesthesia but I don’t take painkillers for anything including my gallbladder and double hernia open surgery. When the anesthesia wore off, the pain was intense for about 12 hours. It was very uncomfortable for many days.

Fast forward a few months and I am doing fine now. I had had this basil for a couple of years but didn’t know it as I wear glasses and the dermatologist kept missing it till I went in without glasses. I don’t know about anyone else’s experience, but I’m not sure if the lady did such a good job stitching me up. Looked like hell for a while.

Anyway, I want to wish you the best of luck. I hope your experience is better than mine.

Picture of me after Mohs surgery.
210savannah profile image
210savannah in reply toBurtJason

Goodness. Sounds like you did have a bad experience. Praying I’m one of the blessed ones who has it easier! And praying you continue to heal.

BurtJason profile image
BurtJason in reply to210savannah

All better now. Face looks normal again.

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