MOHS Waiting for Surgery Experiences

Former Member over 8 years ago

24 replies
37 subscribers
44769 views

Hi I'm new to this forum and am writing in desperation as I'm really starting to run out of patience.

After having a facial biopsy at hospital in September, I had to wait till mid November for my results where I was told I had BCC. I was told that I would have to be referred to Salford Royal for surgery as the hospital that did the biopsy didn't do this surgery. It then took the hospital a further 2 weeks to do a referral to Salford which they received on the 01/12/17 and now at 28/02/18 (3 months on) I still haven't been seen or even had a letter for an appointment. Every time I have rang, I'm told I'm on awaiting list but they are unable to give me any timescales of how long I will have to wait. I think I've been really patient up to now especially knowing that I've probably had this cancer since last summer but I do feel the hospital waiting times are not acceptable for a patients well being. I'm not sleeping, starting to feel stressed and the BCC is starting to get very itchy which keeps me awake at night as its on my forehead so the pillow against my head seems to irritate it. this is the first BCC I've unfortunately had and I was just wondering if this waiting is normal as my doctor told me the cancer I have is a good cancer and not a cancer that will spread but it still doesn't make me feel any better about my situation and the time I'm having to wait.

barbaral over 8 years ago

Hello

There's always a lot of publicity about waiting time targets for cancers and consequently, it's not unusual for patients to expect that cancer treatment happens quickly. In most cases, it does - the NHS are pretty awesome - but on some of the very slow growing and low risk cancers, it certainly can take MONTHS to get any action. We've had people in this group often report 6 months or more from diagnosis to treatment and the winter NHS crisis certainly isn't helping.

The only thing that I can suggest is to keep calling the hospital every couple of weeks and - if you can be flexible - please tell them you'll drop everything if they get a cancellation. That can sometimes help to get things moving more quickly but you need to be sure that you can deliver on an offer like that.

It's unlikely that the delays will make your situation any worse but of course it's worrying and upsetting. If you want to talk to a friendly soul, give the Macmillan helpline a call and one of the nurses may be able to set your mind at rest about the time it's taking or to make suggestions how you might kick your hospital into action. You can reach them Monday to Friday from 9 am to 8 pm on 0808 808 0000

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous

Former Member over 8 years ago

Dear Jose,

Not much reassurance I'm afraid except to tell you I'm also waiting. I had a BCC removed from my neck by simple excision last August when they noticed the one on my nose but they couldn't do anything until I'd gone back to my GP and been referred all over again. 3 weeks ago I had a biopsy (February that's 6 months) I have phoned to see if the results are in which I am told may take 6 - 8 weeks but if it is a BCC I could wait 6 months or more because the waiting list for the rare MOHS surgeons is long. Like you, I was reassured that it isn't an invasive cancer but it could grow a lot more over the nose. We all love and value the NHS but the wheels do move exceedingly slow.

Best wishes for a good night's sleep. From a fellow sufferer xx

Former Member over 8 years ago in reply to Former Member

It's so bad isn't it. Don't get me wrong I appreciate that aggressive cancers are dealt with more quickly but it still doesn't make you feel any better about your own situation. Since my biopsy mine has grown and become more uncomfortable.

I've had suspicious bits of skin and moles removed in the past which have all been tested as ok and surgery happened quickly but them when you are diagnosed with a skin cancer, there seems a terrible time to wait for removal. It just doesn't seem right but I do appreciate that MOHS surgery is a specialised area and not all hospitals carry out this procedure.

I suppose we just have to be patient and wait our turn. Thank you for sharing your experience, its reassuring to know that everyone's in the same boat with regards to waiting times etc.

Former Member over 8 years ago in reply to barbaral

Hi Barbara

Thank you for your comments, I will certainly keep chasing them and try the cancellation route to see if I can get seen any quicker. It is difficult when you work though. I'm just going to have to resign myself to the fact that its going to be a least a 6 months wait and if I get seen before then its a bonus. thank you for your reply.

Former Member over 8 years ago in reply to Former Member

Hi Jose,

Nobody wants to wait for their treatment. When I had my cancers, I felt exactly the same as you. I wanted to be rid of this disease, now, straightaway. I didn’t want to wait.

Does waiting affect your chances of making a full recovery? Let me tell you my story:

I contracted an SCC in 1999, which was misdiagnosed, because it appeared in a place where the rule book says it isn’t possible to have one. The correct diagnosis wasn’t made until three years later – completely by chance – a side-effect of immunosuppressant therapy for an entirely unrelated medical problem, which allowed the SCC to ‘wake up’, and become extremely aggressive (and excruciatingly painful). The medics knew by then exactly what they were dealing with, but I had to wait a further two months for treatment – because no-one had ever treated an SCC in this particular place before. So even after waiting more than three years, you can still recover completely – even from an aggressive cancer. I’m still here – 18 years later, living proof.

I wasn’t born with a positive nature, but if I learned one thing from my battles with cancer it was that looking on the bright side did make a difference. Above all, I found that smiling whenever someone came to see me was very uplifting – because there was always a smile in return. When things were really bad, it helped me realize that there had been plenty of others before me who had been through far worse than me – and they had survived. So what was to stop me surviving, too? And the same applies to you.

Let us know how you get on….

Wishing you all you would wish yourself,

LuckyBoy.

Former Member over 8 years ago in reply to Former Member

Hi LuckyBoy

Thank you for your comments and sharing your experience as it does help to hear about other peoples current and past experiences.

It does help so thank you, I'm a strong person so I'm hoping I can continue with a positive attitude.!!

Many thanks

Jose

Former Member over 8 years ago

Just had a phone call from the hospital I was referred to back in December for my MOHS surgery, I have an assessment appointment on the 18th April so not too much longer to wait and at least the ball has started rolling so I do feel like I'm finally getting somewhere and hopefully they should be able to tell me more about my surgery and some indication of timescales etc.

latchbrook over 8 years ago in reply to Former Member

That's good news

Keep us informed x

"Never regret a day in your life, good days give you happiness, bad days give you experience"

Former Member over 8 years ago in reply to Former Member

Hi Jose121

I had MOHS at Salford Royal in January. The team were so kind and made a scary experience feel OK. I wish you well with your appointment.

Former Member over 8 years ago in reply to Former Member

Thank you for sharing your experience at Salford Royal. I've heard such good reports about the MOHS unit and having been aware of my BCC for some months I'm relieved that I'm finally being seen. Having been referred from another hospital has made the wait seem even longer. Can I ask you after your initial appointment with them after diagnosis of BCC, how long did you have to wait for surgery. (My BCC is on my forehead.)

More from this forum

MOHS Waiting for Surgery Experiences