1B Melanoma

Hi Buttercup56b, welcome to the online community, I haven’t had the wide local excision that you’ve had, my melanoma diagnosis came when it had already spread and no primary was found. I can understand the uncertainty or anxiety that your feeling. It’s not easy when you get your head around one plan and then it all changes. The NHS has quickly had to react to weighing up risk of Corvid 19 versus risk of melanoma. The procedure that you’ve missed out on was the sentinel lymph node biopsy, that checks if your melanoma has spread to a nearby lymph node. It’s strange only a few years ago there were discussions on here wether to opt for the procedure or not to bother, and of course there were pros and cons for either way. I find if I’ve got my head round one course of action it can then be difficult to let my mind do a u turn. 

I recently did a HOPE course which looks at the different problems that people living with cancer have including the big uncertainty of wether it will return, the local cancer centre in my area now offers this as a virtual course. I heard about the course through my macmillan nurses who are my specialist nurses, they have a remit for psychological care as well which is why they know what’s going on locally. I hope many of us here can help with how your feeling but I do recommend the course, I hope your nurses could help you tap into what resources they know of. 

My appointments are by phone to the consultant i think this will continue for a while but I’m glad the consultants are keeping safe, if they caught it, that would have a bigger affect on my treatment than speaking to them by phone. For me I’m in the shielding group so I’m glad that hospital trips are kept to the minimum, it seems very surreal going there for a scan, it felt so different from the last 5 years. 

These are very strange times, I hope your anxiety settles soon.

Thank you for your reply.

I find it very hard to open up let  people know how i my feeling.

Writing on this page took me weeks. 

Its just the uncertainty will it come back etc. I know i will be monitored for the next 5 years which is excellent.  

Hi again, I know sometimes it’s hard to open up, sometimes I feel numb feeling no emotion at all, and other times it’s like there are too many thoughts wizzing round some being overly positive and some being pessimistic, and them needing to settle down a bit before it’s possible to listen to those thoughts. A bit like trying to cross a busy road full of cars, if the cars were worries you’d only be able to see your way through if they slow down or if there’s a gap. I did the HOPE course as I anticipated a difficult time coming up for me, I was awaiting scan results, an anniversary in treatment, and in a bit of a blip. I wanted to make sure that I was aware of all the things I could have in my toolkit to cope.

My go to way of coping is being active, going for walks in the countryside but I was concerned that if I was going to have surgery that I wouldn’t have that as a resource, I knew the course covered mindfulness and I wanted to explore that. and see what else the course might come up with. I don’t think I worried about sharing in the course I don’t think I thought of that, I think I hoped others would share as I’m usually more a listener than a talker. I had been meaning to do the course a few years ago but because it was weekly and an hours travel away and I’d been on treatment it was just never the right time. February was the right time for me, as who could have anticipated that we would be in lockdown and not be able to go out for walks. 

When I first came to the site it took me a while to post to get support for me, it felt more natural to do a reply if someone felt like I had felt.  I found reading the information and support pages helped but also having some support from others. I will put the link in incase it helps.

https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help

i hope you feel among friends here, and feel that anonymously you can open up, I often feel letting a thought out takes the pressure off, it acknowledges the scary thought and lets it just move on and not be dwelled on, if you understand what I mean. I hope you find us a supportive bunch.

Like you, I had a lump removed before Christmas and it was later diagnosed as stage 2 melanoma.  I had my wide local excision, skin graft and sentinel lymph node biopsy performed just before lockdown, all done in a bit of a rush.

Initially I got good results as there was no evidence of spread in the surrounding tissue or the lymph node they removed.  Eight weeks after my operation, however, I was rushed to A&E with life-threatening sepsis from an infected seroma which had developed at the site of the lymph node biopsy.  I had to undergo an urgent operation to remove it, and flush out all the poison, and also had to take a course of very strong antibiotics.  I’m okay now, but I’m left wondering whether it would have been better not to have had the lymph node biopsy, given the problems it has caused, and going back to hospital at this difficult time could have put me at more risk of contracting the virus.

There are always two sides to every coin.  Your consultant will have weighed up the risks of this procedure in the current environment compared with the potential benefits.  I’m sure they will have made the right decision for your overall best health, and will continue to monitor you closely.  My advice would be to trust their judgment, and try not to worry about things that most likely will never happen.  Try to let go of that anxiety, because in my experience it can make you feel quite poorly, which can then become a vicious circle.  I always try to assume all is well unless I am categorically told otherwise.  Take care.

Hi Buttercup56b and another welcome to the online community

It's still very early days for you and I would be surprised if you weren't still feeling anxious. 

I did have a SLNB, along with a WLE, but the thing to remember is that not having had a SLNB doesn't put you at any more risk than me. Obviously it does tell you if it's already spread but you'll be well looked after over the next 5 years with regular check-ups. It's only been in fairly recent times that SLNBs were offered in the UK and even now lots of dermatologists think they're an unnecessary operation.

Like you I've recently had a telephone appointment and, although I'd rather be physically checked, I know it's safer not go to hospital with coronavirus around. My consultant did remind me that if I see anything that I'm worried about to get in touch with my SCNS as normal and they'll see me if necessary.

As I said, you're still in the very early stages of your diagnosis so don't be too hard on yourself. There will come a day when you suddenly realise that you haven't thought about melanoma for a while!

Happy to chat anytime

x

Hi Buttercup56b

I have 1b melanoma, diagnosed in May. I hope you're feeling a little less anxious now but I thought I'd share what my Dr told me. She said that the chances of 1b spreading are about 5%. She said SLNB is only recommended for stage 2 as a further diagnostic tool but it is sometimes offered at stage 1 if they have the capacity to reduce anxiety. She told me that a SLNB is not treatment it is just to see if it has spread to the lymph nodes before the lump develops. She said there is no difference in outcomes between having SLNB or waiting for a lump to develop and then having treatment, so the delay in treatment does not affect how well the treatment will work. I hope this helps a little xx

Firstly my apologies for taking so long in replying to your very helpful  and informative email.

Yes I am feeling a lot better Anxiety levels have come down greatly and I have  returned to work. 

I do get the odd days of worrying but they are getting less. 

Once again many thanks