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An account of my experience with Melanoma - a mole on my leg - SLNB and future surgery to follow after positive diagnosis in sentinel node
I so wish I had come across this site or thought about looking into it years ago. Now I'm here it will be a random stream of thoughts and experiences.
I will be 45 on the 5th March - that's this Tuesday.
I'm a self employed textile designer - lately it's been going really well.
I live with my partner of 20 odd years and we have a adorably funny 7 year old boy who in my eyes is a miracle baby after 3 failed IVF attempts and more or less giving up hope.
My mum had breast cancer in her early 40s. She had mastectomy and was on (a drug I can't remember the name of right now!) for the rest of her life.
Sadly at 69 she discovered she had colon cancer that had already spread to her liver. They suggested palliative care but she insisted on trying chemotherapy (she was a tough cookie)
My mum passed away just 3 months after diagnosis. After her first treatment of chemotherapy she died at home in bed from a heart attack - her friend was with her. I miss her terribly and 8 years on I still feel bad that I wasn't with her., even though I know I shouldn't.
So here I am. In 1998 I had a melanoma removed from my left arm. It was small and thin and after 5 years of check ups I was discharged as cleared.
Since then I've always been careful in the sun - but admit I may have lapsed occasionally.
In August 2012 I noticed a small mole on my right thigh had become slightly raised - on further inspection the skin was slightly broken. This was just before I went on a trip to Croatia for 10 days.
Once back I immediately went to my doctors who referred me to the Homerton Hospital. Why didn't I go to the doctors before I went away - I would have at least got my hospital appointment as soon as I got back?
It was removed 2 weeks later ( why did it take so long - why did I just not contact the Royal London Hospital directly where I went in 1998?)
2 weeks after that I got the results - in a terrible manner, they phoned me to tell me if the date for my operation was OK, prior to my follow up appointment. When I got to my appointment, knowing the results already, the consultant didn't even know why I was there 'you had a mole removed in 1998 - so how can I help you?'
Eventually she got up to speed and agreed that yes it was a melanoma and I was then transferred to the Royal London and after much indecision I had more of the mole site removed and a Sentinel Lymph node biopsy in January. It is now 5 weeks later and I've just had the results that the lymph node was positive. They told me that standard procedure was to have all the lymph nodes of my right groin removed. I came out of the hospital totally numb, upset and not sure how to digest all the information I'd been given..
Should I have had the SLNB sooner? Have I left it to spread - how did my mum cope - she was so strong and didn't cry whilst I was in floods of tears. Here I was with my partner, him being strong and me in tears again thinking about our 7 year old son.
Following a lovely chat on the phone with a specialist cancer nurse a couple of days later,
I wrote an email to my two older brothers. (I had also spoken to them all) just to put things into some sort of order -
Thank you for your comment - I'm sorry you're having such a difficult time, but I really appreciate your message of support. I hope your time ahead isn't too hard and that your treatment helps. Telling friends and family has been hard, but I'm getting through it slowly. Take care
Golly gee whizz!! That's a big one... maybe I can address a few points... although my response might be just as rambling ;)
Don't worry about what might have been and the things you did or didn't do. It doesn't help. The recurrence of my primary melanoma presented as a lump underneath my original scar, I tried to ignore it for months, hoping that it would go away. It didn't. I finally had it biopsied in December 2006. I had a WLE at the end of the following February, the surgeon was away skiing. He didn't offer me a SNLB as it would have been positive (???... never quite understood that comment!!).
Fast forward another 10 months or so, the last couple of which saw me trying to ignore a lump in my groin in the hope that it would go away. It didn't. December 2007 I had a fine needle biopsy that showed it was melanoma. I had a full groin and pelvic dissection at the end of the following February, because... yep you got it, the surgeon was away skiing!
My dermatologist also told me I might have a fat leg. Understatement. After everything I've been through, the lymphoedema was the most upsetting and the most debilitating thing. BUT, after waiting some six months to be seen by the lymphoedema nurse (no, she wasn't skiing), I was shown how to manage the condition, was prescribed compression stockings and had physiotherapy to address tightening in my scar. I'm never going to run a marathon, but I can do everything I could before, and my legs are by and large the same size as each other. You're still young, happy birthday for tomorrow btw, it's not a certainty that you will develop melanoma, just a possibility.
Finding melanoma in the sentinel node is not indicative that melanoma will be found in other nodes, although this is of course a possibility. My groin lump was the size of a large marble, but that one little node had managed to keep hold of all it's cache of melanoma and no other nodes were affected. But you're right, that's no guarantee that the melanoma won't come back, all we can do is keep fingers crossed, touch wood and rub that lucky rabbits foot that it won't.
Luckily we are living in an age of medical advancement in the field of melanoma!
Thank you Marsha,
That's certainly eased the guilt! I passed some of it on to my GP today and know it's now time to move on! Perhaps I should take up skiing before it's too late! xx
Hi Nelly. Life does suck sometimes doesn't it?
I too have melanoma in the lymph nodes at the top of my left leg and am due to have them removed on Wednesday. My doctors have told me that everything points to it being confined to the one node but they will remove all of them just to be on the safeside and my CT scan came back clear so I'm feeling pretty positive at the moment. I've been told by several doctors now that there is no way of telling who will or won't get lymphedema. or by how much and there are several ways of dealing with it if it should occur (they didn't go into details and I didn't ask I already have too much information going around my head as it is so I'll absorb more if necessary).
Please don't worry about whether you should have sort a diagnosis earlier as there's nothing you can do about it now and it's really just a fruitless exercise. Put your energies into more positive things and don't even consider not having your lymph nodes removed. I certainly would prefer to deal with a fat leg than have melanoma in my body, to me it was a no brainer and I can't wait to get it out of me. I have a 2 year old Grandson whom I absolutely adore and I very much intend to be around to see him grow up and any further offspring my daughters may produce.
Good luck with everything, enjoy your lovely family and try to stay positive. Life's for the living
Thanks for your very positive post. I'd like to hope I'm just one step behind you, but waiting for the results from my PET scan is really hard (not sure what the difference between that and CT scan is) I was told I'd hear by the end of the week but Friday came and went and I couldn't even get any joy from my specialist cancer nurse as she was suddenly on annual leave!
My post really is a ramble of thoughts and of course now I've had chance to digest it all, I have no doubts that the operation is the only way forward. So I'm trying to forget about it this weekend, but I've got a cold from hell which isn't helping and if I didn't have all this going on in my head about trying to be positive, I'd be laid up in bed feeling very sorry for myself anyway!! Hey ho. x
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