Newly diagnosed Bowen's Disease (SCC in situ)

FormerMember over 8 years ago

5 replies
27 subscribers
6920 views

I have been worrying over in the melanoma forum for a while as was having a couple of moles biopsied. Got the results today and the one I was worried about has come back as "Squamous Cell Carcinoma in situ", which the consultant said is also called Bowen's Disease. They only got very narrow margins (0.2mm) so want me back on a non urgent appointment to take wider margins, he said another 5mm all around, which will leave a 2-3 inch scar. I'm being seen by a good private consultant at a Spire hospital.

the lesion was on my back (left scapula) , and only about half a cm across. It looked just like an atypical mole. I'm only 36. I have never used sunbeds, I work indoors and have only as far as I recall been sunburned a couple of times in childhood and perhaps once in my 20s when I went to Ghana for a few weeks (applied suncream but obviously there was very intense heat). So this is all very odd and the consultant was as surprised as me as I don't fit the typical patient profile. My initial reaction was relief that it (1) is in situ and (2) not melanoma. But I have no idea about SCC and whilst there was loads on the internet about melanoma I can't find much about SCC and it all seems to be aimed at people in their 60s and 70s. Am I the only person in their 30s to get this?? My dad did have Bowen's disease on his leg and I think it was frozen off, but he was in his 50s at the time and does lots of cycling outdoors. I don't think he's had any further issues.

I have a few questions:

Is it usual for Bowen's disease to be treated surgically? It seems lots of people are treated by freezing or applying creams? I don't really want a 2 inch scar if I don't need it although am more than happy to go ahead if it is the best option.

What is outlook like with SCC? I think it seems good especially for in situ but can't find any statistics etc.

Also we are going on holiday on Monday! Only to Holland so we (still just) have out EU health cards. Will I be able to get travel insurance and will I now need to declare this on everything?

Sorry to ask so many questions but I was in shock / relief in the doctors office and now I have loads of questions!

Thanks

Ruth

FormerMember over 8 years ago

Hi,

I can only reply about the travel insurance, having had a bit of a problem with that this year! I had surgery for a BCC in May 2015. I applied on-line for Tesco travel insurance, and put in details of the surgery, and it was accepted, with just a note to say I had recently had a BCC. However this year, they refused to renew the insurance automatically on-line, and the subsequent phone calls were annoyingly protracted, given that I was now only waiting for a final consultant's appointment to discharge me! The insurance was renewed (I don't know whether there was an extra charge) but I did make sure that they had agreed that I would still be covered for any injuries to my face (where the surgery was) as they threatened to exclude it! Trying to persuade them that a BCC was not suddenly going to recur and need immediate treatment on my 2 week summer holiday was a farce!

So the brief answer is that you will need to declare it, as you are still receiving treatment, but you should be able to get travel insurance. However you might need to ask around, due to the ignorance of those on insurance phone-lines, who are only following their guidelines after all!

As for the scarring, that should fade very quickly! You'll be aware of it, but others will probably not even notice it.

All the best for the next bit of surgery,

FormerMember over 8 years ago

Hi Ruth,

Welcome to this forum. I am sorry to hear of your problems. I have no experience of Bowen’s Disease, but I can tell you what I know of SCC from my own experiences. Statistical evidence on SCC is practically impossible to find here in the UK, but I was told by an NHS consultant that a list of the statistical chances of acquiring primary and secondary cancers has been compiled in Sweden – although it is probably only available to medical professionals; I’ve not been able to find it. In any event, statistics aren’t a great deal of help when you have a problem.

My SCC appeared between the toes of my left foot when I was 46, but remained undiagnosed for three years. I thought (and so did my GP) that it was a verruca, but attempts to freeze it off were unsuccessful. It was eventually diagnosed when I was prescribed an immune suppressant for an unrelated problem (Ulcerative Colitis), at which point it ‘woke up’. Given that I haven’t walked barefoot since I was four years old, I don’t think the cause was sun-related, or age-related; cancer doesn’t operate by rules - it was something that just happened.

My SCC was treated with radiotherapy - which dealt with it. I could have had amputation, but my consultant (who just happens to be the UK’s National Clinical Lead for skin cancer – how lucky am I?) decided on radiotherapy. Although I had a secondary (Lymphatic) cancer two and a half years later, there has been no recurrence of SCC, now fourteen years’ post-treatment. There have been some side-effects from the radiotherapy, but having had an extra fourteen years (and counting!), I’m just very thankful.

As far as insurance is concerned, I’ve never had a problem with travel insurance. Life insurance, however, is a different matter. I declared my cancer at the next policy renewal after diagnosis, (I can’t remember exactly when that was – I buy my life insurance in ten-year blocks) and was told that my premiums would immediately rise by 35% and if I happened to die within the next ten years, any payout would be drastically reduced. But after ten years, the terms of the policy reverted to what they had been originally. (Very welcome for an insurance company to actually do what it said – for once!)

Don’t apologize for asking questions – that’s what we’re here for!

Another small tip about questions: Before you go for any meeting / consultation with your doctor / specialist, sit down and write out a list of all the questions you want to ask, and take it with you. Once you’re there, it’s easy to forget what you wanted to ask….

It’s perfectly normal and natural to worry – who wouldn’t? Was I afraid? At the beginning, of course I was. But I learned to face the fear, and after a while the fear just wasn’t there anymore. And after the fear has gone, you can take anything on – and overcome it.

Always remember: You are not alone. Talk to your friends. Talk to fellow-sufferers. Talk to survivors. This is a wonderful forum where you can contact fellow sufferers and people with experience, understanding and real empathy for your situation. They will provide you with the help and support you need.

Try not to worry about the unknown. It can be difficult, I know. But the best way to deal with situations like this is to take one step at a time. Try not to make assumptions. Try not to ‘Google’ your symptoms, treatment and possible outcomes. Try to focus on what’s positive for you, rather than anything else.

I’m always here if you want to talk.

Best Wishes,

LuckyBoy.

FormerMember over 5 years ago in reply to FormerMember

Hi there , I've been diagnosed with SCC on my left shoulder , I had it frozen and have just finished chemo cream 5% , but I have just had an irritable spot on my left arm , which looks like to me it's turned into another patch of SCC I'm going to see the dermatologist next week , to see what he says ! My question is , is it common to get more than one area of SCC ?

latchbrook over 5 years ago in reply to FormerMember

Hi and a very warm welcome to the online community

I'm sorry to hear that you've recently been diagnosed with SCC and you're now worried that you might have another area.

You probably didn't notice but the post you've responded to is over 3 years old so the posters are most likely not on this site anymore.

It would be better for you to join the group because you could then start your own thread. To do this go to the top of the page and click on 'join this group' and then select 'start a discussion'.

When you have a minute it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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

latchbrook over 5 years ago in reply to FormerMember

How did you get on when you went to see the dermatologist last week?

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

More from this forum

Newly diagnosed Bowen's Disease (SCC in situ)