MOHS Waiting for Surgery Experiences

Hi Jose

I was diagnosed, through biopsy, with an infiltrative BCC- this is probably the most aggressive form of BCC and can certainly cause a lot of deep tissue damage with a poor prognosis if not treated. I was referred initially to plastics who were going to do usual excision but as I had had this at the same place (end of nose) three years previously I went back to my GP who referred for MOHS surgery. I have just had the MOHs surgery three weeks ago so I had to wait a total of 9 months from the biopsy to surgery.

I totally agree the wait seems impossible and I certainly lived on my nerves for most of that time especially not knowing just how far across my face or into my head the filaments had spread. The NHS does a great job but resources are very limited.

My advice would be to look after your skin both inside and out and keep as healthy as you can. I ate lots of skin friendly foods and cruciferous veg every day.

[edited by admin]

Good luck and let us know how you get on Lin x

Hi Lin

Thanks for your comments. It has been 8 months already for me since my biopsy I'm just glad that my appointment has finally come through for the hospital that I've been referred to for MOHS.  I agree though, the wait is horrendous and although I consider myself to be a calm chilled out person, I definately have days when I'm struggling to cope with it all, due to continued wait.  It does help however to speak to people on here wo are going through or have gone through the a similar experience.  

Thank you

x

Hi Jose

I had my biopsy in November and had the BCC diagnosis confirmed just before Christmas. I didn’t get an appointment and so booked to see one of the consultants privately because I was so anxious. I had had the BCC for over 20 years. I saw him on 5th Jan and he said the waiting time for surgery was about 8 weeks. I asked about paying to have it done and it cost £2300 and I could have it done the next week. I was lucky enough to have the money and so had the surgery on 10th January. The anxiety had started to seriously affect my work and so I paid. I have a two inch scar at the side of my nose. It sounds big but I am used to it not and no longer feel self-conscious about it. The team at Salford were extremely good.

Best wishes to you

Just wanted to say had my pre surgical appointment at Salford Royal last week.

I was given two options the first being Radiotherapy on my BCC at Christies with a 90% success rate which would leave a pretty unsightly scar or MOHS Surgery with a 100% success rate however he did advise that my scar was going to be approx. 2 inches long.

I opted for surgery as although the BCC is on my face, I want to be sure its gone and I'm sure I will be able to hide the scar by changing my hair style, make up etc.  The scar left from Radiotherapy looked far worse and if it wasn't on my face then this wouldn't matter so much but after this having been going on since last summer, I need to know that its gone so surgery is the best option in my opinion.

Unfortunately its another 3 months wait for my surgery at Salford but I was assured that my cancer wasn't going to spread although it could possibly grow a bit bigger.  I feel a little better now I'm heading toward the surgery end of the road. Thanks for everyone's comments and experiences as it has helped.x

Hi Jose

I had a BCC diagnosed by biopsy in Jan this year. It was on the scar of a previous BCC. It was thought to be a recurrence so I was referred to a different hospital for  MOHS.. Waited another 4 months for the clinic appointment.  The surgeon told me he didnt think a MOHS was necessary as he didnt think it was a recurrence as it was at the top of the scar. He was so dismissive of my concerns. I think he just wanted me out of his room because he was running an hour late. Consultation was less than 5 mins. Waited another 2 months for a simple excision under local. It's on my forehead -I am going in today, 6 months from diagnosis. Couldn't sleep as it has grown quite a bit and I have another 'new' blotch in the middle of the scar. How many times are they going to  carve up my face before they get it right???

No answers for you - I hope you get your treatment soon xx

Hi Dancergal

Sounds like you've have an awful time. 

I hope it all went ok. I also have been having sleeping problems due to anxiety and also sometimes pain in the area as mine has also grown since original diagnosis.  I always thought anything "Cancer" was dealt with quickly by the NHS but obviously not the case for BCC diagnosis.  I went to my doctor regarding feeling exhausted due to lack of sleep etc. She wasn't keen to give me sleeping tablets but told me to get Promethazine which is a strong antihistamine which does help with anxiety and sleeping problems and to be honest they have helped and have got me into a better sleeping pattern. 

I still haven't heard anything about my op, they did say waiting list was 3 months and its two months next week so I'm hoping it wont be too much longer.

I hope your feeling better.xx

Ive finally got a date for my surgery.  I had been told it would be 3 months wait but it has been just over 2 months so I decided to ring up to see how far down on the list I am.  The lady I spoke to offered me a cancellation on Monday but I was so shocked to be offered something so soon that I hesitated and asked what the next available date was. She offered me the Monday the 2nd July which was just over a week later so I have gone for surgery on the 2nd.  I don't know if ringing them has made me get seen earlier but I'm glad now that I did ring.  I'm not looking forward to it but will be glad to get it over with.  can anyone tell me how long I will approximately be there for. Ive been told to be there from 8.30am and I'm expecting to be there for the best part of the day. My husband has offered to stay with me if its allowed but I'm rather inclined to send him home as it seems pointless both of us being there all day.

Hi Jose121

I had MOHS surgery in Nov 2017. My check in time was 8.30 and I got away at about 5.00. The excision was prompt but it was a long wait for the afternoon reconstruction. Take a good book with you!

My husband came with me but went into the town nearby to do some work after I'd checked in. To be honest, I would have liked him with me as the reality of what was happening to me only kicked in during the day. But I had not really been prepared beforehand, having believed acquaintances' advice that this was all very routine. No tears or anything but just felt rather odd and reflective.

Hope this is helpful.

Hi Jose121,

I had Mohs last July at the Churchill in Oxford to remove quite a large tumour from just above my lip. Four injections very quickly numbed the area, and a lovely nurse held my hand throughout. Fortunately I had done a mindfulness course a couple of years before and this really helped me. Deep breathing does wonders - and I lay back, closed my eyes and imagined I was on a lovely hot beach with the waves gently lapping! I had to go into recovery and wait while they tested the edges. My (adult) daughter came down and sat with me in recovery - but this was only possible as there was no one else there at the same time. I had to go back in twice before they were sure that they had removed the entire thing, and in all I was there from 8am until around 5.30pm. 

The whole team was fantastic and made a very difficult day so much easier. Without being too graphic, I had a rather large hole in my face, just above the left corner of my mouth. I have had 3 plastic surgery operations, the last one being in November, to put my face back together ( I lost about 30% of my upper lip ). A section of my chin and lower lip was used to fill the hole - and it has all been a tremendous success.

I was very fortunate, as it was a very rare, malignant tumour, but I went to the right place at the right time - my doctor referred me to our local hospital very quickly, and following a biopsy I was very quickly seen at the Churchill, and the surgeon operated 3 days later. After he explained to me what he was going to do, I was so relieved that I only had to wait over the weekend. I then had to wait 4 days with a hole in my face before I could have the first of the plastic surgery ops - liquids only, through a straw, for nearly 3 months!

I do feel for you having to wait all this time, it is very worrying, and it just plays on your mind and seems to take over everything else that is going on in your life. But please be reassured that it is not as bad as you fear it is going to be. They really know what they are doing, and I know there are lovely nurses all across the country who do their job because they love it and want to do their best for their patients.

All the best - I'll be thinking of you next week

Denise

Hi Sue

Thanks for sharing your experience. Maybe I will tell my husband to stay then but he is a bit of stress head so I maybe would be better on my own with a good book or magazine to take my mind off things.  Thanks for your comments.x