Hello - my ramble into this blog

7 minute read time.

FormerMember

2 Mar 2013

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 -

"Just to fill you in and writing it down just helps.

I spoke to the specialist cancer nurse today who has put me in the picture a bit more, or at least has pulled together all the things I was guessing and put them in a realistic setting.

My melanoma was found in my sentinal lymph node - this is the main guard node nearest the the primary melanoma site. The fact that it is in that node indicates that it will be in other nodes. Now that they have this knowledge the automatic standard procedure is to remove all the lymph nodes of the affected area - ie. my groin. Thus hoping to rid me of the melanoma altogether. This does not mean that it won't come back - but the intention is to try and stop it or at least delay it.

Side effects - I am more than likely to get lymphdemia - which will cause my leg to swell/pain/discomfort and it can only be controlled not cured. She was pretty honest about that as it's the whole of my lymph nodes to that leg so it's fairly certain I will get it. So my life style will have to change a good bit if it affects me too much. The hope is that I can manage it with massage/exercise and wearing a big sock! But all in all it's doesn't sound great so I'll just have to try and come to terms with it.

At first I thought she was presenting it to me as you may not want to go ahead with this because you are young and it will affect your life significantly - but then as she went on she seemed to turn it towards the fact that I've just got to come to terms with it because....

What if I didn't have the operation?

The melanoma may spread to other organs such as liver/lungs or appear as a lump. The latter can be treated with removal but the former is more difficult to treat.

So I have to make the decision of carrying the melanoma in my body knowing that it may well come back and not be treatable or be treatable

Or, having the operation and living with the side effects, hoping that it will stop the melanoma coming back but with no guarantee

I'd like to find out if there is any statistical data to say that removing the nodes is more beneficial but I am more or less thinking that the operation is inevitable as I'd rather my family has me with a fat leg rather than not at all. I don't think I can live with the risk

I'm seeing the GP on Monday to mull this all over with him.

The nurse will tell me on Tuesday who is actually operating on me as that hasn't been made clear.

Besides all this:

I'm waiting to get an PET scan - this will show up any cancer spread to any other parts of my body - it's my main focus of worry prior to the next stage and may alter the necessity of the lymph node removal - ie not worth doing - I'm buggared. Until I get this result it's all very uncertain. I'm not even sure how conclusive it will be - shame I didn't request this at the onset via Westfield then at least i might have been better prepared.

Part of me wishes I'd never had the diagnostic of the lymph node as I would have presumed I was clear and just carried on with my life until it hit me again as there seems to be no total guarantee that it won't come back anyway!

Anyway - better to write it down so you can take it all in and offer any questions you think I should be considering/asking."

So on Monday I'm going to my GP just to talk to someone outside of the family and to see what he has to say.

I'm worried and scared, but want to be positive as having read lots of comments on this site, there is lots of hope and definitely support.

FormerMember over 12 years ago

Hiya I am Kay I am sorry t hear the way I are feeling, I don't have the same as you I have Colon not good stage I am currently heading wards my 5th chemo session, I had no idea I had this until I go rushed to hospital for an emergency operation as my bowel was about explode, me and my family no idea that was n nov all such a shock, I think about my family my 3 children 20 17 and 15 and I am so glad I survived that operation I am s thankful because I try and imagine how they would all be coping now, and now is hard so hard but I am here with them we don't know how long for but for the time being its ok, the treatment makes me feel car and I jus think keep going keep going and I cry and I am angry, why me , but who knows what may happen but for now just being here is enough. Would love for them to say. Have responded well and your in remission, I wish that so much. I am being as honest as I can with you I understand how you feel it's so hard, but you will find strength within you really will, I only joined this site his week and have found people being so kind. Please try and think positive and relax and look deep inside and find that strength feel the love from others around and draw on that. Wish you all he best and am sending positive vibes o ou and your family Kay x
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FormerMember over 12 years ago

Hi Kay,

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

NH x
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FormerMember over 12 years ago

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!

Good luck!

Marsha xx
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FormerMember over 12 years ago

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
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FormerMember over 12 years ago

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

Val xx
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