17. Neck Dissection Surgery and how the Existing UK Protocol for Melanoma Patients Failed Me

June 2014. The next step in my story is my surgery for excision and biopsy of the swollen lymph node in my neck. This happens a couple of days after the PET scan. My parents go with me at the hospital for what is a relatively minor surgery under general anaesthetic. It is a pretty quick surgical procedure, I am not ‘asleep' for long, and all being well I am supposed to go home in the evening, which I do. It all happens in a day and it’s pretty uneventful. I remember the surgeon coming to the ward in the morning to see me before the surgery, he circles with a pen the area on my neck where the gland to be excised is, which I find quite funny, and asks me to sign the consent form to the surgery. I will not see the surgeon again later as he enters the theatre after the anaesthetic has kicked in. I realised already at the time of this first minor surgery something that I will be able to confirm in the surgeries that will follow: that there is one doctor whose presence and role are much more prominent than the surgeon’s from the patient’s perspective: the anaesthetist. They are the last doctor whom you see just before surgery when you are in theatre, they are the last person whose eyes you see before you pass out, the last person to address comforting words to you and the one who tells you that they will be there throughout the surgery to ensure that everything will be OK with you. Anaesthetists are the nicest doctors I have ever met, with no exceptions. They have such a key role in the surgery and yet they always show their human side, they know how to empathise with the patient, which is so important for the patient to feel safe.

PET scan and lymph node excision out of the way, I am now ready for the results the following week, when I will have a complete picture of the situation. My parents have had to go back to Italy. I go to to see the oncologist for the results with my partner, we have both been extremely worried and anxious (to say the least), and we have already shed many tears in the previous days, but when it comes to see the doctor we are so mentally prepared to expect the worst that we are not really shocked when we hear the awful diagnosis: I am a stage 3 cancer patient, as melanoma was found in the lymph node. The next step is for me to have a lynphadenectomy or neck dissection, i.e. a major surgery consisting in the complete removal of all the lymph nodes to the right hand side of my neck. Straight from the oncologist’s appointment we also go see the surgeon who will also carry out this second surgery. If we left the oncology clinic feeling heartbroken but hopeful, the surgeon really manages to morally destroy us. Here I start to learn that doctors can be very cold and can lack any empathy with you as a suffering human being and cancer patient. He tells me that this surgery is not a ‘cure’, that we are just trying to stop a 'flow of water' which is flowing already through my body, only in this case it’s not water, it’s cancer. How can anyone say such a horrible thing to a patient who has just being diagnosed with cancer I fail to comprehend. We left the clinic feeling devastated, but with no alternatives other than go on through this surgery and find the strength to fight back. The surgery was planned very quickly, they called me from the hospital the day after and it was all booked to happen in two days’ time, on 5 July 2014. The picture below shows my scar before the surgical staples were removed and few months later (fortunately I heal as quickly as a superhero!). 

At the time of writing, in June 2015 (one year on) I am thinking back about my neck dissection surgery quite a lot, not least as I sometimes suffer from a swollen neck, a condition called lymphodema, which is caused by the lack of lymph nodes and therefore a build up and lymphatic fluids. This condition is not curable and not easy to treat. In my particular case, not only has this surgery left me with this long term side effect, it has also proved unsucessulf and unnecessary, as it did not stop the cancer from spreading internally to the organs. Just at the time of writing, the results of a new study have been published which may confirm what I have experienced in reality on my own skin: a randomised study has found that surgical removal of the lymph nodes surrounding a melanoma tumour after a positive lymph node biopsy (melanoma found in node) does not improve survival (see link below). In other words the side effects may outweigh the benefits of performing such surgery, as it decreases the quality of life of the patient without having any significant impact on their long term survival.  I wonder if the day is not far when complete lymph node removal will be assigned to history and considered a brutal and unnecessary surgery.  The protocol for treating melanoma has certainly been changing dramatically and will change more in the future. What upsets me is that I was not offered this surgery as an option, I was told I had to have it as this is the protocol. Full stop. I wish I had been explained the pros and cos and then it would have been my decisions. On balance, I would have probably chosen to have the surgery, but I would now feel better about it. I tell myself that it was the best thing to do AT THE TIME, but I still feel that patients should be given more options. 

When I was told I had to undergo a lynphaedenectomy, I was also told that there was no drug (systemic) treatment available to me at the time. This is because there were no openings to entry into any medical trials for stage 3 patients and drug treatment is generally only available to stage 4 patients. Considering what has happened to me in the following months I so wish they had started immediately some kind of systemic treatment rather than just carrying out a surgery and then dismiss me with 3 months check ups and 6 months scans. I feel like the protocol has failed me. Whilst I appreciate that the protocol will ‘statistically’ work for the majority of patients and not for all, I believe that there should be more flexibility allowed in it. Expecially given that everyone knows that what is being done now is not perfect, and will evolve, hopefully towards a CURE one day. I wish my oncologist (I have now moved on to another hospital by the way!) had been more focused on me as a patient, a patient with a melanoma which had already shown signs of being aggressive (quick spreading from skin to lymph nodes, very high mitotic rate - and I’ll talk about this some time). And therefore had considered scanning me again sooner after the surgery, say within 3 months, instead of literally and blindly applying the existing protocol and delay the next scan for another 6 months. Before 6 months had passed, the cancer had spread to my liver and bones and in spite of being on a private care surveillance programme with one of the top oncologists in the UK, I had to go to my GP and cry for help and eventually be scanned in my local excellent NHS hospital to unveil the awful thruth. 

During my neck dissection, which was performed by 2 surgeons and took about 5 hours, 25 lymph nodes were removed from my neck. They were all clear. That is to say no other malignant cells were found in any of the tissue removed. I was therefore assigned a cancer stage 3b (see post 5) and told that there was a 60% probability of the cancer spreading in the next ten years. I remember being so relieved at the time, when they told me the encouraging results, I cried a lot, letting finally all the tension come out. But now I have to ask myself, what did this surgery actually do for me? If four lymph nodes had been positive for mm (as an example) then I would have been at stage 3c at that point, instead of 3b, same difference as far as my cancer history is concerned! All that the protocol did for me was help stage my cancer at various points in time, according to the convention in place, but it did not treat the cancer, nor did it improve my health or increase my chances of long term survival.

In summary, in July 2014 this was the care/plan I received: an unnecessary surgery not without long term side effects, no systemic or adjuvant drug treatment available to me, and next scans scheduled far too late (the melanoma was quicker to spread than they had planned to monitor it). It is taking me a lot of positive mental attitude (and a change of hospital/oncology care) to accept how my melanoma story developed, without upsetting myself.  

I wonder whether systemic treatment should be more widely available to stage 3 patients, in and outside trials. A key learning point from my experience is to always push your doctors for more, don’t wait to be offered. Ask whether there are any drug treatments available to you, their pros and cos, and how to access them. Also, ASK TO BE SCANNED SOONER rather than later. I think a CT scan should be offered to all mm patients, including stage 1 and 2 patients. And definitely scanning should happen sooner after a complete lymph node dissection surgery (say after three months). There is no reason (other than cost savings) to wait six months (which is the current guideline) after surgery for a CT scan or not to offer one to stage 1 or stage 2 patients (currently no routine surveillance scans are recommended).  We should challenge the protocol and make it work for us as individuals, we all know that sadly it is not perfect and is evolving, so really each melanoma patient, no matter what stage their cancer is at, should be considered in isolation and be offered for considerations the best care options currently available. 

http://ecancer.org/conference/677-asco-2015/news/7353-asco-2015--extensive-lymph-node-surgery-may-not-be-necessary-for-some-patients-with-melanoma.php

The scar from my neck dissection surgery on 10 July 2014 and 12 August 2014