WLE and SLNB clear but cancer still spread. How and why?

Yes I do understand what you are going through. In 2010 I had melanoma on my thigh and had a WLE and SLNB There were very small cells of melanoma in the node and was advised to have a node dissection in my groin and ended up in hospital for 2 weeks and it resulted in lymphodema.

The results of the dissection were negative and I went 7 years with check ups and all were clear. However 3 years ago I lost a lot of weight and doctors put it down to stress .I kept returning to the doctors convinced I was ill and at last I was diagnosed with melanoma in my lungs ,near my spine and a 11 cm tumour near my kidney.I am on immunotherapy treatment and so far the tumours are shrinking and I have only minor side effects. I do know how you feel and have myself had very dark moments but have decided to make the most of each day and I certainly appreciate things more than before my illness.I have learnt to pace myself and rest when tired which is usually after treatments. I also find this web site useful. I go out a lot with friends and also my husband who has been my rock.I am eating well and perhaps too well over the Winter as my weight has crept up.I hope to get back to more walking now the weather should improve. It’s fine at times to feel angry and cross and feel life’s unfair but when you can try to be kind to yourself Surround yourself with true friends and family and let others help you both emotionally and with any jobs needing doing.I will be thinking about you.I also had lymphatic massage for years but refuse to wear the stockings as I find them incredibly uncomfortable. 

Hi Diane1951

MelanomaI.comes back for some people and not for others.  You can compare several people who had what appears to be a very similar condition, but have very different outcomes over the following years. I think that the doctors really do not know why MM comes back in such a random way. I'm sure of this, because if they knew what was going to happen with all of us, they would prevent it...

Like you over the past few years I have found my melanoma has spread, then had it treated (removed) only to find it springs up again somewhere else.  I get the results from my last scans on Monday so I will see what has happened to the tumor in my abdomen then.

It certainly sounds like you have been having a tough time of it, and getting cross and deflated sometimes is bound to happen. When I get like that, I go and do something I enjoy.  I might buy myself a book, go and visit some event I've spotted in the newspaper, perhaps have a wonderful meal with friends, or maybe take a long walk alone to think it all through. I find that these rewards I give myself help to balance things out in my mind and in anycase I'm sure I deserve them.  Actually I think we all deserve them as this melanoma is a tricky thing to deal with.

On the otherhand I read here of new treatments that occasionally work amazingly well on some people (though sadly not all). So there is maybe something new just around the corner that will be available and work on me -and you- soon.  

Let us know what treatment you get for your chest lymph node; I may need that myself one day and I'd feel much better knowing what might happen!

Take care,

J

Hi Diane1951,

I feel like shouting “don’t listen to her, you have to celebrate every win, it’s just a down period that’s making DIane feel like this”.

Oh Diane, I’m sorry things aren’t going well for you at the moment, I read your post last night just before bed but as I’d had scan results yesterday I just couldn’t muster up a reply. My first thought was how I understand the disappointment of a recurrence or spread, Im in a bit of uncertainty myself at the moment, but I didn’t want the post to be about me I’ll do a separate one for that. In 2018 I went from being a complete responder to immunotherapy to having a recurrence, my mind went from deep disappointment for a few days to appreciating that I was still getting monitored so they could take action asap. 

I was listening to the news this morning someone talking about politic uncertainty, and giving an analogy of a sat nav not really knowing what time we will arrive at our destination, as the sat nav doesn’t know it’s snowing or if a cat will cross the road, she gave her take on accepting nothing in life is certain and I wish I could remember all that she said about forward planning as it was very good. I’ve been on a HOPE course the last 4 weeks, 2 to go to make sure I have a tool box full of ways to cope with the uncertainty and problems that our diagnosis brings. Hope stands for Help Overcoming Problems Effectively. 

I firmly believe it is good for us to say when we are not happy, to get it out of our system, so I’m glad you felt that you could here, I know I’ve done it a few times here and in a blog on here. I then plan how to get out of feeling at my worst, and to plan things so I don’t reach my worst again, or at least for not so long if that makes any sense. 

The question why, Im not sure you really wanted an answer to that, but there are a few links I could give to perhaps a Macmillan’s explanation of how cancer spreads or a melanoma patient conference video one showing dandelion seeds. It is what it is, is how I feel at the moment and glad that I still have treatment options and that new patients have the option of adjuvant treatment. 

What is happening with you Diane? Have they given a treatment plan after your news?

KTatHome lgrgdg90 Sailor2

Hello to you all. Thank you so much for your replies. It is so reassuring to hear other peoples' stories and they came at just the right time as I was feeling 'out of sorts' and needed that pep talk from you KTatHome. It is good to have help to re-frame your thoughts and look at problems in a different way so thank you all. I am starting immunotherapy soon. Ipilimumab and Nivolumab so we'll see how that goes. Thanks again for listening. 

Diane1951, 

That out of sorts feeling is very understandable. I hope your treatment starts soon and goes well. Happy to listen to any moans.