Stage 3 melanoma and lymph node dissection

I can only speak about my experience and if I was you I would get the views from the experts. I had a left groin dissection 10 years ago after finding a very small melanoma in SD  I was in hospital 14 days It gave me lymphodema in my left leg. They didn’t find any evidence of melanoma from the nodes they took out. I later went  on to develop melanoma in my lungs ,near kidney and spine. That took about 7 years to happen. I now wonder if immunotherapy would have reduced my chances of it spreading. I will never know but at present immunotherapy has been very successful with me ,clearing it from my spine and lungs and also mostly from near my kidney. I am at present on Nivolumab.

i can only repeat that the oncology team will be the best to advise as every case is different. At the time I wasn't  offered immunotherapy .Good luck with your treatment .

Hi Sam,

I am really sorry to hear about your diagnosis. 

My husband is in a similar situation right now. He has been diagnosed just before Christmas with stage 3 melanoma. He is BRAF positive. He originally went to the GP in October as he had a lump behind his ear. He had what turned out to be a swollen lymph node removed and the biopsy came back showing this contained melanoma cells and the primary source has been identified as a mole above his ear which thankfully he has since had removed.

CT, MRI and bloods came back clear on Tuesday. The 18 day wait for these (Christmas fell in middle of this which held things up) as I am sure people on this forum can relate was awful but we are so relieved they are clear.

Anyway having researched this a bit we were expecting he would be put forward for a complete or selective neck dissection. However, the Ear Nose and Throat MDT looked at scans and has advised dermatology MDT that no further surgery is needed (other than a wider local excision around where mole was to be done by dermatology). He will also most likely get some kind of adjuvant treatment which we should know more about next week when we have the oncologist appointment.

So we are kind of in a similar position - we were expecting further surgery and probably all lymph nodes in area to be removed but told not necessary. However, no real explanation given as to why so our Macmillan nurse (who is wonderful) is going back to ENT to at least get some clarification around their reasoning. Like you say if surgery really isn't needed then great but we want to be sure that is genuinely the case. It does sound from reading up on this like maybe there has maybe been a bit of a move away from CLND in recent years? So no real advice to offer other than that we are in a similar situation right now. We are also in our 30s - husband is 36 in Feb.  

Sorry again that you are having to go through this. It would be good to hear other people's experiences.

Thanks,

Sarah

Hi Sammy8, I have not had a CLND, it was contemplated twice by my oncology team, but my circumstances are different but I went through the same thought processes, but mine and the teams conclusion might not be what you will do, and if a third time it crops up I might well take it.

I had an unknown primary, melanoma was diagnosed when it was many lymph nodes in my pelvic and abdominal area so it wasn’t constrained to one set of nodes, this was back in 2015. I am BRAF+ so I had Dabrafenib followed by immunotherapy Pembrolizumab and had a period of 12 months off all treatment and clear. It was then found on a scan in one groin node again and on closer look probably 3. I was put back on immunotherapy as it had worked so well before. A year later I was still on Pembro and on mentioning it would good to be clear again instead of stable they sent me off to discuss things with a surgeon to take my one enlarged node away. I had been to the melanoma patient conference where surgeons and oncologists discussed that CLND were a thing of the past not to be automatically done, they were done before as an alternative to just watch and wait, now there was Dab/tram or Immunotherapy. So I was happy for one node to be removed to go into a Mel resist trial but when a CLND was mentioned by the surgeon when I saw him I balked, I wanted him to explain why he thought in my case it was beneficial. I knew from the conference that it is still done on stage 4 people when it is a better choice, I wanted to be convinced it was a better choice for me (I’m classed as stage 4 due to the unknown primary and many nodes and a further spread to an ovary, but due to my low disease burden also treated like a stage 3). I was very concerned about the risk of lymphoedema for possibly no gain, as being active was/is important to me my greatest joy was walking netball and walks in the countryside and Pokemon Go walks, (I’m 62 but still young at heart it would appear and activity is my stress relief).

The surgeon was not approachable, he came across as the big I am, and my questions came across to him a bit like I was challenging his expertise and as if he was short of time. I was not expecting a CLND and needed him to convince me it was a suitable route. It didn’t happen and I felt like I was being steam rolled into a CLND in a few weeks time. I rang my skin cancer nurse specialist, I wanted to know what had been said at the MDT the discussion between the surgeon and oncology that made a CLND the right route, and to express how I was feeling about the prospect of possible lack of activity. The nurse had been in the meeting and I felt listened to, I had googled the consultant after our meeting and he was highly thought of, I also expressed that if I had to have it done perhaps I could go privately with my insurance to speed things up. As they wanted my node sample for a trial going private was discounted. What eventually happened was second surgeon who specialised in laparoscopy was brought in and they would only take one node and any further enlarged ones down the chain rather than the whole set, the second surgeon would be present incase they felt they needed to do the whole removal. I wouldn’t really know when awaking that they only took one out. 

I was clear after the removal and put back on immunotherapy as an adjuvant treatment for a year. I was told that the node sample removed showed that melanoma was still dying so the Pembro/ my immune system was still working. 8 months or so later I could feel a very enlarged node,  I had a scan and core biopsy where they take a sample with a needle it was confirmed as melanoma, and surgery was discussed again. By the time I saw the surgeon the node had decreased and he said it was impossible to take just the one node out if he couldn’t locate it now it had shrunk, and a CLND was the only choice for me surgery wise and the team would discuss me again. They reported back to me that the gain from surgery was not worth the possible risk of lymphoedema. Lockdown then hit and I couldn’t be very active as not allowed to leave home thank goodness we bought an exercise bike and members here gave suggestions of music to dance to. 

I had a break from treatment due to covid risk and nodes came up again and I went back on treatment earlier than the original break suggested, and I’m still having 4 nodes at a time misbehaving not the same combination of 4 on the last 3 scans. It’s not gone wider than the groin so at times I wonder if that surgery would have been useful, and at others I think as it hasn’t spread it’s a good job I didn’t have major surgery. Both are fleeting thoughts, you can’t help having but best not to dwell on, what ever decision I came to was right at the time I made it, or my team for that matter. I’ve been back on Pembro since June after the break still not clear and may have to take a break in Feb again as oncologist has said this may be necessary for NHS capacity and covid risk. (I’m wondering if you are in a high or low area and if your surgery or adjuvant treatment may be affected).

In short I’d recommend thinking what concerns you most about each option and what would please you most, there’s no wrong or right answer, but a balance for logic verses gut reaction sometimes as we are balancing a lot of what ifs in our decisions, and having a lot of faith in our team.. I can give you a link to the melanoma patient conference video on YouTube I went to but it sounds like you are well read on that area. 

Good luck with your decision and let me know if you have any further questions after my long reply or want further info, or use the reply button to let yourself go through your reasoning more and you might find you know which way you want to go. The Macmillan support line can also be a place to listen to you and clarify your thoughts.

Thank you, it's helpful to know that I'm not alone!

Hi, Sarah,

Thanks for that, and sorry to hear about your husband's diagnosis. It's a real whirlwind of emotions as you adjust to the new situation.  

I've discussed it again with the surgeon, and also had the opinion of an oncologist from another hospital. They both advise against a CLND with the tumour burden I have.  On one hand it's a relief, as I'm currently very active and getting out on my bike is my main way of staying happy. But there is always that lingering doubt that maybe it would be worth the complications now if it means a better long term outlook. Also the surgeon won't acknowledge that there is still a bit of uncertainty over whether it is beneficial in the long run, he makes out like it is very clear cut.  

One thing that is concerning me now is still no BRAF results back 7 weeks after the lymph node removal, which is delaying treatment. 

Anyway, I wish you the best of luck, and stay in touch.

Sam.

Thanks KT, that's very helpful.  I think it's very unlikely that I will have a CLDN, so I will focus on enjoying my physical health that I have at the moment, and avoiding what sounds like an unpleasant operation. Of course, there will always be lingering doubts about whether this is the right thing. Hopefully the immunotherapy will stop it recurring.