A little bit of background first. My melanoma started on my upper leg just above my knee, on pretty much the line where my shorts would end. I was diagnosed on 1st November 2017, some months after earlier wrong diagnoses, but that’s another story for another blog post. The tumour was removed in the same month and I was told a wide area excision would be needed after some time.

I was asked to consider a Sentinel Lymph Node Biopsy (SLNB), that would be conducted at the same time as the wide area excision. That biopsy would provide information but not necessarily anything more, it would however enable you to take part in future drug trials and treatments such as immunotherapy, which wouldn’t necessarily be available otherwise. It also enabled follow up “maintenance” to be in the form of six monthly CT scans rather than relying purely on touch and feel inspections by the consultant.

The way it was originally described to me it sounded like a simple little process as part of the operation, so it seemed a bit of a no brainer. I was told I’d have to move to another hospital to have the wide area excision and the SLNB, as the equipment needed for the latter wasn’t available where I was currently. That meant moving my treatment from Peterborough to Addenbrookes in Cambridge, and as I live in Lincolnshire that was the start of what was to become a very (too) regular, and often arduous, 100 mile round trip, for ongoing treatment.  

So I agreed, and then had a meeting with a new consultant at Addenbrookes. Basically he put the fear of God in me! By bringing out all the risks that this simple little process could actually produce. So now I was in a little bit of mental turmoil, should I or shouldn’t I, what are the pros and cons?

But I decided, surely information is better than no information and despite this being an early point in what has turned out to be a long and ongoing journey for me, I chose the option with this thought of being better prepared in mind, and also about potential future treatment opportunities being opened up, despite that seeming a far and away distant thought. Sadly now a reality!

My point is that if you are offered this SLNB option you should take it. The more you know about the way your melanoma is acting, the better for you, because treatment early is the best treatment. Waiting for something to develop to a detectable size isn’t in my opinion a good idea. Just hoping that you’re ok internally and not checking it properly isn’t a good strategy, it might feel better, ignorance as they say is bliss, but why take a chance when you don’t have to?

In the days before my operation a lump flared up in my groin, so big that it was easy to detect. Whilst I went through the process of preparing for the SLNB on the day of the surgery, with the dye inserted into my leg to find the pathways to the nearest node, the consultant just removed the lump I’d felt, because it was obvious, it didn’t need the pathway to identify a potential lymph node to test, there was a palpable node standing out literally like a sore thumb!

As I was preparing to leave the hospital some hours after the operation the consultant called me and told me that he was pretty sure the node he removed was cancerous and before waiting for official results I should consider a next step of having a block dissection in my leg taking all of the lymph nodes in that area out, which is a major operation. That wasn’t the best of news to receive as you’re preparing to leave hospital just hours after surgery, believe me! It led to a lot of soul searching to consider what to do, which I will save for another blog post.

I didn’t get away without the after effects of SLNB that had been threatened. But I did overcome them!

My leg was very sore, naturally. I developed a seroma, the size of an egg where the infected node had been removed, I had to make several trips to hospital to have the seroma checked, it wasn’t drained it was decided to leave to resolve naturally. I had some lymphedema, my ankle and lower leg swelled and I had to sit with my leg raised at home and sleep in bed with it raised on cushions too. It took me 4-5 weeks to get on my feet properly and my mobility back to something like normal.

But that was it. The point is you will overcome it, the body has a great ability to repair itself. Of course the prospect of pain and problems isn’t a good one, but through positivity, determination and application to overcome it you will. There’s another very important factor in how you respond, and it’s how you prepare yourself through diet and fitness, and mental attitude, this is a major factor in the battle against cancer and I will write separately on this key subject soon.

To recap, in these circumstances I don’t believe a surveillance approach is in your best interests, it’s rough and ready when you could have precise information, good or bad, it is better to have knowledge than be in the dark, it really is.

My melanoma was spreading, I’m glad I knew. There’s a lot more to the story to follow…..

Anonymous
  • <p>Hi&nbsp;<a class="internal-link view-user-profile" href="/members/john-12">John 12</a></p> <p>There&#39;s not an easy answer to this I&#39;m afraid, but it is essential to have regular checks or scans, and if anything is there it can be tackled earlier, I hope that is in place for you. I had the lymph node dissection after my SLNB, there&#39;s another blog post by me all about that, and it&#39;s true the effects are unpleasant, but they can be overcome in my experience. In my case that still didn&#39;t stop the cancer, and it metastasised further into lungs and pelvis so now I am being treated with immunotherapy since last November. Like you I wanted it to go away too of course, but as it hasn&#39;t, I still think more information is better to be able to confront how to tackle it. I hope everything turns out well for you.&nbsp;</p> <p>Tim</p>
  • <p>I had a stage 2 melanoma, 2.2mm on my back at Christmas time. I decided against SLNB due to the complications. To be honest I probably avoided knowing too much about the cancer. Still not sure if I made the right choice, but deep down I know it probably doesn&rsquo;t make sense to not have it.&nbsp;</p> <p>To an extent I just wanted the issue to go away and ensure life remained normal for my family. Sorry my post is not very positive.&nbsp;</p> <p></p> <p>John</p>
  • <p>Hi&nbsp;<a class="internal-link view-user-profile" href="/members/ktathome">KTatHome</a></p> <p>Thanks for taking the time to read this and share your thoughts, which are very relevant to read. It&#39;s interesting to know that consultants are recommending a SLNB, as when it was suggested to me it was made very clear that it was my decision, when what I actually wanted was a recommendation! I must say my treatment has always been very quick luckily, I haven&#39;t waited long for any operation or follow up. Given that I&#39;ve had a&nbsp;metastasising melanoma I&#39;m very pleased to have had the SLNB, which I was told &quot;qualified&quot; me for any treatment like immunotherapy, which I have ended up needing.</p> <p>The conference sounds an interesting event, could you share a link or contact for it?&nbsp;</p> <p>I did look at your profile and I hope your recent operation is a success. I think blogging is a very useful way to show your feelings and reflect on your experiences and has benefits for others who may be in similar situations. I can certainly empathise with what I have read. The treatment options are thankfully improving, and in as much as we are captives to melanoma it is actually both interesting and reassuring to see how this is developing. I hope your Pembrolizumab sessions can continue as normal and keep you clear. My best wishes for you.</p>
  • <p>Hi , I started a blog too about my metastatic melanoma, mainly as a way of getting my thoughts out of my head and feeling a blog was more suitable than a discussion. I see this entry has turned a bit into a discussion though so thought I&rsquo;d add a bit of my thoughts. Since 2017 when you had your diagnosis the NHS has moved on with their recommendations and adjuvant treatment. People with stage 1b and above are offered a SLNB but more consultants are now recommending a SLNB because where as it was just a staging tool before which meant it was an indicator for how likely it is to spread; now the SLNB is a gateway to within 13 weeks of the SLNB of receiving treatment to help prevent a further spread. Without the SLNB this treatment can&rsquo;t start. It may mean that some have treatment that they wouldn&rsquo;t have needed but for others it&rsquo;s hitting any tiny cells too small to be seen as early as possible giving the best chance of helping the body be free for years of melanoma. Guidelines for adjuvant treatment are lagging behind a bit as melanoma is moving fast in its treatment changes. I attend the melanoma patient conference to listen to the consultants talks and thoughts, the June 2019 one will have a session on watch and wait that might be interesting for anyone whose reading this later, (the conference puts a video of the talks on you tube after the conference, so the June 2018 ones are there with discussions on adjuvant treatment before it was about to become practise at more hospitals)&nbsp;</p> <p>I hope your Immunotherapy treatment continues well Tim, I&rsquo;m on Pembrolizumab, (which is like Nivo) which you can see by clicking on my user name and going to my profile. My blog, I do for me mainly, I could just do a private diary but I remember how useful I found a video blog from a patient ahead of me. Sadly she passed away, but I found her strength inspiring and where as I found a bit of survivor &nbsp;guilt crept in when I became clear as she passed away now I&rsquo;m back on treatment I&rsquo;m reminded how each year more treatment options become available for others. I hope your blog is of use for others as it is for you to write down your thoughts and memories.&nbsp;</p> <p>Best wishes</p>
  • <p>Hi&nbsp;<span>&nbsp;</span><a class="internal-link view-user-profile" href="/members/dontknow">dontknow</a></p> <p>I agree with you totally on the point of the medical staff asking you to decide what you want to do. Exactly the same experience for me, and of course what you really want is some direction from an expert. I found it hard making the decision, although doing nothing didn&#39;t seem like a good option to me. Irrespective of the side effects that I did get, but then overcame, I was in a better position knowledge wise to face the next step, which for me became a lymph node block dissection. It&#39;s good to hear you overcame it&nbsp;and that you&#39;ve stayed clear since. You must have been an early adopter of immunotherapy!</p>