Melanoma: Wide area Excision complete. Couldn't find Sentinel lymph Node .What to Expect?

Hi,

I've had a cancer on my scalp removed. From the biopsy, I was surprised to be told it was a melanoma. Whilst waiting for the wide area excision, I had a PET scan which found nothing...but I understand it might not be sensitive enough to locate early spreading. (Can melanoma not be diagnosed BEFORE it's cut out?....so that only one excision is necessary...this has been going on since May).

About 6 weeks ago I had the standard wide area excision (this time without MRSA!) to ensure the requisite larger clear margin. At that time they also tried to use a radioactive dye to locate the sentinel lymph node (Gamma Scan). But they couldn't find the SLN...so it couldn't be removed. 

I am now awaiting an appointment with the Oncology Department.

I suspect I will be offered regular scans (PET?) to see if they can pick up any signs of spread in the coming years.

I heard on the radio this week that immunotherapy is sometimes offered but apparently the "success" rate with melanoma is only about 50% whish seems rather poor.

I am obviously concerned about the possibility of the cancer spreading. I know the chances of my melanoma having spread is 18-20% so I really should be very optimistic.

Like most patients (no doubt), it is the delay and lack of knowledge/information that is worrying. I'm trying to be patient.

What should I be asking the oncologist when I do eventually see them? I don't want to miss any opportunities. eg treatment options, trials etc Is there anything I should be pressing for eg alternative to PET scan?

Thank You

Parents
  • I'm glad you are seeing an oncologist. My partner wasn't offered oncology care until late in his melanoma journey. If they don't know where the sentinel is it'd be stabbing in the dark to try and find the right node. Your dermatologist should have shown you how to examine your surface lymph nodes. Make sure you take care over your neck ones as it was in your scalp. My partner's was on his scalp too. He needed a graft and the sentinel was negative only for it to later be in another node. Sentinel node biopsies are not exact and the doc said there's debate over how useful they are. My advice is to be vigilant and to push anything you find concerning. Don't let it rule your life though. My partner is stage 4 and two years later from that staging he's still here on immunotherapy.

Reply
  • I'm glad you are seeing an oncologist. My partner wasn't offered oncology care until late in his melanoma journey. If they don't know where the sentinel is it'd be stabbing in the dark to try and find the right node. Your dermatologist should have shown you how to examine your surface lymph nodes. Make sure you take care over your neck ones as it was in your scalp. My partner's was on his scalp too. He needed a graft and the sentinel was negative only for it to later be in another node. Sentinel node biopsies are not exact and the doc said there's debate over how useful they are. My advice is to be vigilant and to push anything you find concerning. Don't let it rule your life though. My partner is stage 4 and two years later from that staging he's still here on immunotherapy.

Children
  • Thanks for your reply. As in my reply (above), I haven't seen a dermatologist for months now. The only people I've seen since then are the surgical people...who have been very good. My regret is that neither the dermatologist consultant nor the plastics consultant could initially diagnose the melanoma). I know everyone is doing their best but I have to say the lack of engagement/communication from the consultants has been quite frustrating. It feels at times like pulling teeth to drag any kind of response. For example it took 3 weeks to find the clear lateral margin to the melanoma (and not just the margin to the fibroxaconthoma that it sat on top of!). When I finally got to talk to the consultant it took me a 50 mile round trip and the consultant answered that question in 10 seconds flat with the facts. A simple text or email or call could have put my mind at rest 3 weeks earlier. I know I shouldn't criticise but there are several examples of where my anxiety could have been significantly reduced by more effective communication. Rant over (sorry). I do hope your husband continues to do well. I'm glad the immunotherapy is working for you.

  • No, do criticise. Communication can be awful at times in the NHS. My partner has a Macmillan nurse that relays everything and things have been much smoother since his care transitioned to the oncology team.