Skin Cancer: I have a "secondary" cancer of my... - CLL Support

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Skin Cancer

Motorman profile image
19 Replies

I have a "secondary" cancer of my face skin, it is a Basal Cell Carcinoma about 15 mm across and is now bloody and looks a bit angry and continues to grow, slowly.

I have been waiting since before lockdown to have it removed, despite being " on the list" with a local hospital on chasing things up I find I have been passed on to another hospital ( out of area ) who can't tell me when I will have the thing cut out. Everything is blamed on Covid of course.

Anybody else having problems with delays?

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Motorman profile image
Motorman
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19 Replies
GMa27 profile image
GMa27

Sorry to hear that.

I had a basal cell near my eyebrow. Removed in May. I am surprised you were delayed. Basal cells grow slowly however the longer you wait it can grow deeper. I only needed one layer of Mohs procedure.

Are you in USA or UK?

My local dermatologist does it in his office.

Maybe your hematologist can hurry the process? 🙏

If in examination I have a basal or squamous cell, the dermatologist removes it during the office examination. Usually, the intern will do it. He or she then sends it off to pathology to determine if it is basal or squamous cell. Also they make sure that they have clean margins (no cells left behind). It all takes less than a minute . If they don't get clean margins, then I get called back at a later date. Squamous cell is worse than basal as squamous cell has a higher rate of metastasis. I have only been called back once.

Basal cell carcinoma has clean borders and is easily removed in a simple 60-second procedure using a device that looks like a cigar clipper. Squamous cell carcinoma sends out tentacles so it is not as simple and may need MOHS surgery.

PSP52 profile image
PSP52 in reply to

Hi Greenblue....the process of removing a basal cell can take longer sometimes even it the spot is small. It can depend on where the spot is located. I had a spot fester up like a blister near my upper lip. The dermatologist did a small biopsy and it turned out basal cell. Since it was my face and so close to my lips I chose the route of having a plastic surgeon do the surgery rather than having the Moh's procedure. I went to the hospital and the plastic surgeon did a delicate removal and sent it to the pathology department for a frozen section. It turned out the margins were not clear and more removal was required. I ended up with eleven stitches above my lip. Everything healed beautifully and all you see on my face is a very fine line that is barely noticeable. So, you can go the Moh's procedure with a dermatologist or have a plastic surgeon do the surgery. Since my CLL diagnosis my dermatologist gives me an overall check twice a year. She has found two very suspicious spots that she said would turn into basal cell and she removed them in her office.

in reply toPSP52

PSP52...Point well taken. Twelve years ago I had a spot on my forehead. The intern nonchanlently removed a quater (US) size spot and slapped a band aid on it. When the lab results came back and it was a squamous cell, I was sent to MOHS surgery. Another time when I had a basal cell on my neck, the dermatologist in the office visit chopped it out. I got a call to come back as they did not get clear margins and in the second office visit the doctor cut more out and achieved clear margins.

This is the same dermatology group where the young intern found a swollen lymph node on my neck and alerted the attending. They then sent me to an ENT surgeon who diagnosed CLL and thyroid cancer. Within a month I had my thyroid removed. The dermatology intern got department kudos for the find.

Motorman profile image
Motorman

I am in the UK so the good old NHS is dealing with it. I have just been on the phone to chase things up. There has been a cock up, I don't have an appointment, and I am not on a waiting list. Nobody knows whats going on and the "booking team" person needs to speak with her supervisor but her supervisor is on holidays. My haematologist simply says "Chase them" .Now I am a bit angry, I might ring PALS (complaints dept!) tomorrow.

mrsjsmith profile image
mrsjsmith in reply toMotorman

Yes do ! Just make sure you have dates etc to hand to quote ! I got ‘ lost ‘ in the system and my GP in desperation told me to call PALS ! Got a telephone call with an appointment the next day.

Good luck

Colette

cllady01 profile image
cllady01Former Volunteer in reply toMotorman

Motorman, are we to assume the skin cancer is secondary to Chronic Lymphocytic Leukemia? I ask because this is your first posting to our site and your profile does not tell us your history.

We do deal with skin cancers secondary to CLL. So, I hope you are in the right spot for a continued exchange in regard to CLL.

Sorry for your having difficulty with getting your skin cancer looked at--these are difficult times even when we do get prompt service from health carers, so do keep after them.

Motorman profile image
Motorman in reply tocllady01

Yes I have CLL with TP53 deletion, I am on W&W and have been for over 10 years, the skin cancer (BCC?) is secondary. I hope my profile is a bit better now although it is not an easy area for an old man to navigate! I have phoned another hospital not to far away and they were totally different, they have advised of their BCC clinics, location and confirmed that I will be on their list as soon as the GP refers me! So, phoned the GP and await a phone call, maybe this week, we will see.

As an aside, I suspect there are others, who, like me have gained a great deal of knowledge from reading this forum, I am not up to consultant level yet but I will keep on studying :-)

cllady01 profile image
cllady01Former Volunteer in reply toMotorman

Thank you for your response. So happy you have gotten through to a live person and are now on your way (hope the wait is not too long).

As it happens, on this site, we are all learners. With CLL being so diverse it isn't easy to keep all the info we receive from each other. Well, it has been easy to keep the info, but to find it again is another chore.

Best wishes for a good appt. and fast resolution for you. And, please keep us informed--skin cancer is varied also.

HopeME profile image
HopeME in reply toMotorman

Motorman:

Don’t fret about the delay, Basal Cells are slow growing and rarely do they metastasis. I’ve had three removed. Two were removed via Mohls surgery about five years prior to my CLL diagnosis and one was taken off last week again via Mohls. The one removed last week was diagnosed in February via a shave biopsy. I think that is the term that was used. It was on the side of my nose. Originally, I was supposed to have it taken off in April but Covid set everything back. It never healed and it didn’t look pretty for the past number of months but other than a little bleeding here and there it wasn’t a problem. I was surprised by the length of the scar on my nose (probably about two inches if straightened out) and the swelling but besides that I’m no worse for the wear. As someone said it depends on where the Basal Cell is located as to how much surgery is involved. I also believe the surgeon said he needed to take skin from my cheek to repair the location where the basal cell was located. I’ll probably have a fine scar on the side of my nose but at this point in my life I rarely don’t care. My vanity left me long ago.

Handley profile image
Handley in reply toMotorman

Hi Motorman. I'm very surprised that your haematologist appears to rather unhelpful. I'm in NE England and have found (for similar reasons to you) that my haematologist works very closely with my dermatologist in the same District Hospital. I understand that there is a link between CLL and an increased potential for skin problems (both CLL and sometimes drug-related side effects) for people in our situation, and for that reason it would surely be reasonable to expect your consultant to refer you directly? If your referral via the GP stalls, could you try pushing your consultant a little harder? As a by-line, I spent 30 yrs in hot countries (sadly without a hat sometimes!) and so have a constant supply of 'things' appearing on my forehead and I have noticed that they appear more rapidly since I have finished treatment. Maybe that's just anno domini, but maybe not.......... Good luck - Handley

opal11uk profile image
opal11uk

I had one removed in April after waiting a year, there seems to be a shortage of dermatologists in my area and by the time I saw one and was then referred to a plastic surgeon and then waiting for my turn it seemed like forever. Eventually the appointment was set for April and then came the closures, the Pandemic, so it was cancelled however the Plastic Surgeon I saw didn't forget me and an appointment came for surgery a few days later and I went to a private hospital which was Covid free and had the surgery. Mine was very close to my eye, it had been steadily growing, was like a mini volcano as it kept coming up, oozing blood and going down, it was also very itchy. It was too deep for immediate on the spot removal not was it suitable for medication. I was very pleased to be rid of it however they called to say the histology showed not all cancer cells had been removed and that it would necessitate further and more invasive plastic surgery, so I am on 3 monthly watch and wait appointments (if they ever come) to see whether or not they cause further growths on the surface of the skin, the hope is not and I avoid further surgery so we wait and see. I would add to this that I got so frustrated in the end that I rang and rang the appointments and then contacted my GP and asked he expedite the surgery before this 'thing' got any bigger, I was concerned about my eye, this helped, I also wrote to the PALS department of the hospital and I feel that if I had not taken action I would still be waiting! I advise you to do the same, just don't go away!!!!! ps. Govt. guidelines apparently is that it doesn't matter where the basal cell is, face or leg, there is no urgency or priority.

GSBS1954 profile image
GSBS1954

I am also waiting for my BCC to be removed but the Hospital just say I'm on the list and can't give me a date as yet. The consultant did say these are slow growing and not to worry but it's hard when it bleeds. Mine is on the back of my ear

otonal profile image
otonal

(UK) Referred December 2019 for Basal Cell Carcinoma biopsy in April. Appointment changed to “follow up” in June which was changed to phone appointment end August. Chasing via Haematology nurse who says I am on waiting list. Taking photos of the mole in the meantime...

Motorman profile image
Motorman

My thanks to all who responded, plenty of info there and some similar cases to my own. I will see what results the GP gets and then I might get on to my Haematologist, maybe he can push things a bit. I am not worried, I just want my fair share of NHS services! I can afford to go private if I have to but I don't want to, I will hang on and see what happens.

COOMBE profile image
COOMBE

I’m in exactly the same position. Am going to phone today to see if I can see someone privately. First seen in February and it’s twice the size now. On my shin

bennevisplace profile image
bennevisplace

Hi Motorman, I hope you're further forward with getting your BCC seen and treated. I've had several of them since CLL diagnosis, and a few new ones since FCR treatment. Skin problems are common with CLL even at an early stage.

Compared with BCCs, which usually affect areas of skin previously overexposed to sun, melanomas can look innoccuous and can develop pretty well anywhere on the body. If they are not removed fast they can be lethal, so find out what to look for and do get your significant other to check you over regularly.

Skin cancer risk is highest for older males post chemo, see pubmed.ncbi.nlm.nih.gov/312... This study did not link incidence of skin cancer to mortality rate, but another study did hematologyandoncology.net/a...

I think all of us - and our supervising medics - need to recognise we are at higher risk of getting skin cancers and ensure that we get REGULAR SKIN MONITORING especially after chemo.

Motorman profile image
Motorman in reply tobennevisplace

Well, my phone calls and pestering seems to have paid off. Appointment at dermatology next week. At least they will look at it. Then maybe cut it out later.

It's a shame we have to be a pest to get the ball rolling, buy hey, whatever it takes....

bennevisplace profile image
bennevisplace in reply toMotorman

That's great news. Once they have seen you and treated you, they should be willing to monitor you. Good luck.

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