Melanoma is a type of cancer that usually starts in the skin. This group is a place for people affected by melanoma to get together, ask questions, share experiences and support each other.

Does Melanoma always come back?

No. of entries: 9 | Posted on 21 Oct 2011 12:44 PM

Does Melanoma always come back?

  • I have Stage 3a malignant melanoma. I had a WLE and a positive SNLB. I had a full right axillary dissection which showed no more evidence of cancer and yesterday started an Avastin trial. Not surprisingly i'm feeling very anxious about the future. Everytime you see or read anything about melanoma it's followed by 'the most aggressive of skin cancers'. I wanted to know - is it ever ok? Do people who've had melanoma always get further tumours or do some people get away with just once?! It's still all fairly new to me and would love to hear what other people think.
  • Hi L,

    I must have missed you joining the group, as I like to say hello to new members.  In answer to your question, melanoma can come back, in my case after 10 years, but it doesn't always.  And that's about the best answer I can give!  I wasn't warned that it could come back, so lived those 10 years in semi-ignorant bliss, but when I discovered a lump where my old mole had been I was under no misconception what it might be, and that's part of thing with melanoma, move on, but don't forget about it completely and always be aware of any changes in your body.  Anyways if you're on the avastin trial (I'm on the observation arm) you've got 10 years of check ups ahead of you!

    Are you on facebook? If you are come and join our group melanomamates uk, it's a closed group, so we don't share our experiences with regular family and friends, just our melanomamates!

    Marsha xx

  • Hi Marsha

    Thanks for replying. Sorry to hear that it has returned and I hope you've got it back under control

    Since being diagnosed in May I've done the odd bits of online searching in the hope of finding a story of someone who's been through what i've been through but that has been the end of it. I can't work out whether that's just very rare or that you're likely to have an online presence if you're still going through the ordeal.... As a result despite knowing that right now it's all gone and as the Doctor says I'm currently cancer free I'm really fearful about it returning.

    I know i'm lucky to have got on the Avastin trial and part of putting myself forward for it was to do with wanting the continuing checks and hopefully reassurances but it makes it very hard to bury your head in the sand! I guess for me it's relatively early days i'm only 6 months in and until now i've never worried about my health and unlike my thankfully vigilant husband (who spotted the melanoma) have been far from a hypochondriac i do just have to accept it's now very much part of my life and i'm lucky so far that it's all been controlled and removed. It's been a very long tough summer but right now things are looking less scary and more positive and when i see my two little boys playing and having fun i'm not fearing i won't see them grow up and instead am able to enjoy the moment.

    I am on facebook and will look up the group.

    Thanks again for responding.




  • Hi Lucy,

    Yes, I'm back on track again, lymphless down my left groin and pelvis but 3 and a half years NED (no evidence of disease again)!

    My own daughter was 6 when I was first diagnosed, she's 21 now and almost flown the coop! I still have moments of fear, I probably always will, but it does get easier!

    See you on facebook!

    Marsha xx

  • Very glad to hear that you're back on track again now and very reassuring that life really does go on again. Am trying not to dwell to much on the 'Why me'/'It's not fair' side of things and just plodding on trying to be optimistic. Having a particularly good group of friend and family certainly help with that.

    Had you had other lymph nodes removed first time round?

    I'm due to get some physio next week after lymph node removal from armpit. Generally I seem to have bounced back but the movement in that arm is restricted. The doctors seem very unfussed....but friends and family are fussing at me to get it sorted.

    Just tried looking on facebook for group but am clearly a facebook dunce as couldn't seem to find out. Will try again tomorrow!


    Lucy x

  • You could look me up on facebook, Marshipops (Jackie Marshall), add me as a friend and I'll invite you in!

    I just had a bit of a WLE when I was first diagnosed in 1996, nothing else. Then in 2006 I had a much bigger WLE, but no SNB, the surgeon didn't see the point.  A year later I developed a golf ball sized lump in my groin, and then had the full groin and pelvis dissection.  Luckily like you, it was only in one node, but due to the size of it, it makes me 3b.

    Physio is good, I had it on my leg and it's great that you're getting some too.  It would be routinely offered to a breast cancer patient, usually we melanoma patients get overlooked!  Has the perils of lymphodema been explained to you?

    M x

  • Thanks, I'll do that in a minute.

    Again, i can see that i've been lucky. My melanoma was just over the threshold and the SNB was optional but encouraged and thankfully only 1 out of the 16  removed was positive but i guess if it'd been left longer it could have been a lot worse.

    The physio has been arranged through my lovely research nurse on the Avastin trial - she talked to the breast cancer department where as you say it's much more routine and that's how it's been arranged! Yes, I've had lymphodema explained. Again, i've been pretty lucky - there's been no swelling on my arm and only a little bit round my back but even this seems to be settling down as the movement in my right arm improves.

    Thanks again for your advice. I'll look you up on facebook now.

    L x

  • Hi Lucy,

    Just wanted to wish you well & agree with everything that Marsha has said. I missed your post last week as I have been away but I wanted to let you know that there are a few of us out there who are still NED after a few years - 2 years & 3 months in my case!

    I wasn't fortunate enough to be offered the Avastin trial as melanoma was found in 2 nodes - one in my groin & one in my pelvis - and I know the constant checkups etc make it harder to try & get back to a normal life but you will get there. It will take a while but you will slowly find yourself spending less time worrying & more time enjoying all the normal things in life again.

    Good luck with the Avastin trial & I hope you find the support you need from this & the facebook site,

    Best wishes

    Angie x

  • Hi Angie, Sorry for the slow response - I get very lost on this site ! Thanks for your reassuring words. Always good to hear positive stories. Sorry you weren't able to do the Avastin trial. I know I'm really fortunate to be on it and need to keep reminding myself of that but as you say it acts as a constant reminder and it's hard not to fixate on the MM. Keep well Lucy x