Why am I so obsessed by sentinel lymph node biopsy?

Hi CH74, it is such a shame that you are feeling so uncomfortable with watch and wait, I can understand how that feels and it’s very common to feel apprehensive about the uncertainty and possibility that you might have a recurrence, that goes for any cancer. In fact it’s a very frequent topic in the group Life after cancer - Discussion Forum.

I am not a medic, I’m a metastatic melanoma patient (melanoma that has spread) and as my diagnosis was 6 years ago, I’ve had a lot of times when I’ve felt uncomfortable with a wait when blips in my treatment have happened. I hear you saying that you’ve spoken to your hospital team and know it’s daft to want more lymph nodes removed, but can’t shake the feeling. I would recommend talking to the Macmillan support line 0808 808 0000 and they could possibly put you through to a nurse who could talk you through things again which might help to get into a more positive head space, and they may suggest something to go forward with coping with the uncertainty.

Macmillan in combination with the University of Coventry wrote a programme or course called Helping Overcome Problems Effectively HOPE, and it helps

with being kind to yourself as you have been through a stressful time,

with running through coping mechanisms, some you might already use and perhaps some new ones

with discussing a healthy style to help support your immune system

and I’m sure other things I’ve forgotten about, as I did the course just before covid preventions started.

My local specialist nurse emailed all her caseload that the course had spaces available if anyone wanted to go to the local cancer centre, and they have done some on line as well. For people who are working they did a shorter version of a few hours at a weekend so your nurse might know what’s available for you of the help line might.

I am aware when reading through what I’ve put above that I’ve leapt to a possible solution, and that’s what you in a way did to, the solution being take more nodes out. It’s not actually the solution though in many cases. Why would you take healthy nodes out when their job is to protect us and catch any stray melanoma cells, preventing them from reaching organs. A full dissection of an area of nodes is something I wanted to avoid for me, but it is suitable for some people. With me as my melanoma had been in many nodes previously in 2015, taking out one area when it might then pop into another area it’s been before seemed not to be the plan when targeted therapy or immunotherapy could help  all over the body. Before you then think well can I have some of that then, due to potential side effects you don’t want to give that to someone who doesn’t need it yet so the NICE guidelines say who adjuvant treatment (preventative treatment) should be given to. 

So rather than wanting some treatment that you can’t have and don’t need they are keeping a watchful eye on you. Some times a scan has told my team it’s in a lymph node, and sometimes aI could feel it and had to alert them, my history is in my profile which you can read by clicking on my user name. I can’t say it’s always easy being hopeful, and it’s impossible to be hopeful all the time but trusting your team and talking through when there is a grey area is good to not keep going over the same worries and only facing a problem when you have one. My team are currently trying to do a balancing act with me of not jumping too soon with a new plan and not leaving things too late. So your post had me going over my situation again. I hope things get easier for you soon.

Thank you so much for taking the time to respond.  I have printed out your post and read it a couple of times already. Such wise words, and a lot for me to think about.  Thank you.

Hi CH74, I think you just want to know that your team and doing the best that they can for you. That you know how to be vigilant and check monthly for anything suspicious and to know who to tell, and to have confidence that they will act quickly when you feel something isn’t right.

We've had a lot to wrap our heads around, many people not in this forum might be of the opinion that, well it was only skin cancer and it’s gone now. Many here will recognise how there are times that they will be anxious and need to preempt the days they will feel like that. I wish there was a positive switch sometimes to turn on but sometimes things have to be worked through. If we can help in any way to aid getting you to that point we will, mostly it’s just letting you know you are not alone, and anxieties are natural, but don’t have to be permanent, that’s just too exhausting.