Melanoma Patient-Newish to the site

Hi Claire,

Me again!! I haven't had a PET scan but would love one, they're quite a bit more accurate than the usual CT scan at spotting melanoma, takes perhaps a little longer and you will be slightly radioactive afterwards, so no cuddling your daughter for a day or so. There aren't that many PET scanners around the country, but I'm sure someone here will have had experience of one and might be able to give you more information.

Hope it all goes well for you tomorrow.

Take care!

Hi there
I have had a pet scan..a radioactive injection is given to you & you spend an hour resting for it to work..it then takes approx 45 mins for the scan..I think I drifted off thinking of holidays & nice things...it is very similar to a CT..just more specific. All the best!
Julie

Hi Marsha,
Thanks for your reply. The Pet Scan went well. I get the results next Friday when I see my oncologist, so another nervous wait which we all must be accustomed to on this site (but will never get used to).
The whole scan took approx. an hour with an hour's rest beforehand when they injected the isotope to go around the body. I wasn't really bothered what they did to me, to be honest as I had the world's worst migraine. I thought I was going to be sick before and after the scan. Must have been all the tension about it beforehand. When I came home, I slept from 4pm until 11am the next morning.
I'm hoping that's it as far as the initial diagnostic stage goes and that further progress is made regarding a treatment plan. I was only diagnosed 6 weeks ago, but everything moves so slowly, it may as well as been six months ago!! I hope the medical bods decide what they're doing with me soon.
Just as a matter of interest, have you been able to continue working inbetween treatments? I hope you don't mind me asking, it's just I have been off since I was diagnosed and I'm not sure how to proceed with the whole job/ treatment balance. I suppose I'll have to wait until I know whether it's surgery or radiotherapy. Also, is there any reason why you haven't been offered a Pet Scan when you've had a CT Scan, or am I one of the lucky ones who lives near one, as they're few and far between, so I'm told?
Hope all is going well with you.

Take Care,
Claire xx

Hi Claire,

I don't think there's a PET scanner near me, and I've never been offered one, maybe I'll ask about it a my next oncology visit. As for work, with my first brush with melanoma I had an afternoon off, the second, I had two weeks off and the 3rd, 7 weeks off. I'm not sure how you're supposed to react to being diagnosed with melanoma, so I did what I felt was right for me. There's a lot of unknowns with this cancer malarkey, emotionally I don't know how I should feel and physically I don't know what I should be looking for or concerned about, I wish someone would tell me!

Let me know how you get on with the results.

Look after yourself.

Marsha xxx

Hi

I,m going into hospital on Friday to have my operation to remove my Lymphnodes under my left arm pit. I was diagnosed with Metastatic malignant melanoma left auxillary lymphnode, 3 weeks ago. And it seems an eternity to the op date. The experts tell me that everything is going as fast as it can. I found the lump 10 weeks ago. although you want everything to go quicker this does seem the procedure, and with the advice I,ve had of the people on this site, it has helped me to accpet what I've got , and how to cope.
Ive had the usual scans , and luckly the CT scan came back clear which was good news. Once my op is out of the way I will know what part of the journey I will take then with the oncology people (not met them yet)And hopefully they can find my primary site(no moles or apparant marks on my skin, seen a dermetologist). I've got a personal melanoma nurse from Cancer Care Cymru helping me and with me all the way, and he is taking a lot of stress away, by liasing with all the medical parties for me, and answering my questions.
The advice I'm getting from him and others is to take this one step at a time, as too much info plays havoc with your mind.
Any way good luck to you and will speeak soon. Let me know how you are getting on.

Hi Tuckerz, it's Claire TH here. Thanks for your email. It was nice to hear from you. Hearing from you and other members of the site makes me realise that we all seem to be taking differing routes in our treatment depending on the presentation and location of the Melanoma. I'm under the impression that my oncologist wants to take the radiotherapy route before resorting to surgery, but I could be completely wrong depending on the PET Scan results which I'll find out on Friday.
Speaking of which, I wish you all the very best for your surgery on Friday. I realise it must be a daunting prospect for you having that type of surgery but some action, even if it's painful has got to be better than no action at all. I really hope they find your primary-I couldn't rest until they'd found mine and I knew where it came from.
Let me know how you get on. I'll be thinking about you-take care.
Claire TH

Hi Claire TH
I am a new member here, only joined last week but it already feels like 'home'.
I have been diagnosed with Amelanotic Melanoma (one that's NOT caused by moles changing!)3 weeks ago. It's in a very unusual area, my inner right ankle. It's been classed as intermediary and I am awaiting an 'urgent' appointment for Sentinal Lymph Node Biopsy plus Plastic Surgery as I need a wider excision of the original site because it's "aggressive". I'm in a similar situation as you ie limbo. Until I have the SNB I won't know if it has spread anywhere else. I have been told I will need a scan too but nothing has been arranged as yet. I have already been off work for 6 weeks and the doctor has just signed me off for another 4. I can't work because of where the site is as I have to keep that foot raised as lower extremety surgery causes problems because of circulation and nerve endings and the job I was doing meant I stood for 7 hours a day so I can't go back to that. Once I've had the op I've been told it could take up to another 5 weeks to recover enough to work so I am not in a good financial situation!
As others have already said it's the waiting that takes it out of you. All my other appts were weekly from when I had the op 29th July to seeing the Plastic Surgeon then everything seems to have come to a grinding halt because of the Bank Holiday and his Sec being on holidy for a week. When I got to speak to her last Monday she assured me it would be at short notice within the next few weeks, not months!! Not exactly what you want to hear.
I'm not looking forward to what they are going to do - radioactive dye first to track where the Lymph basins are, then an injection of blue dye, then my groin being opened up so that they can see which is the Sentinal Node. Meanwhile the wide excision will also be done and skin taken from elswhere (haven't plucked up the courage to ask WHERE from lol)for the skin graft. Oh what fun!!!!
It's great here though with so many to chat to who are maybe a bit further down the line with their treatment and can share your worries and fears.
I look forward to seeing you around.

Take care

pheonix

Claire

Sorry to have to welcome you here but at least you're not alone.

I'm in a similar position to you I think and am just about to have my second lymphadectomy, this time in my right axilla. No primary found so just surgical treatment when they find anything new.

As far as work is concerned, my last lymphadectomy had me unfit for normal work for about 6 weeks due to pain and lack of mobility in my left arm. My situation is slightly unusual in that I am an airline pilot which has very stringent medical rules to I was off for 3 months in total while I got re-certified. I'm back off again for this second lump so it's at least 3 months again until I am re-assessed. The more lumps I get, the more difficult it is to get re-certified but I'll cross that bridge when I get to it.

David