Spindle cell melanoma

Dear Essexgirl200,

My name is Carla and I’m one of the Cancer information Nurses on the Macmillan Support Line.

I am sorry to read about your diagnosis of Stage 2 melanoma. This understandably must be an emotional time for you. I am glad you have reached out to us here at the Online Community, I can see you have joined out Melanoma Forum and Emotional Support Forum, I hope that you have been finding it supportive.

We know it is difficult waiting for appointments, I am sure you are eager to have your Wide Local Excision (WLE) .

Alongside the WLE your team may arrange for a  Sentinel Lymph Node Biopsy (SLNB) to check if there are any melanoma cells in the sentinel node. This will then lead to further decisions around treatment planning.

Your doctor may also be arranging tests to look for changes in a gene called BRAF. This causes the melanoma cells to make a protein that encourages the cells to grow. This information will tell your doctor if certain targeted and immunotherapy drugs will work for you if you should need them.

In England, Scotland, and Northern Ireland the waiting time targets for treatment are:

• No more than 2 months (62 days) between the date the hospital receives an urgent suspected cancer referral and the start of treatment.
• No more than 31 days wait between the meeting at which you and your doctor agree the treatment plan and start of treatment.

It may be that you would want to consider speaking with your Clinical Nurse Specialist (CNS) or your consultant, or their secretary, to clarify what the expected time frame will be within your local hospital service.  

It may be that there are delays in the process due to pressures on the hospital system. You may want to liaise with the hospital PALS (Patient Advice and Liaison Service) who may be able to help you access services if you are unable to speak to your specialist nurse or consultant.

As well as accessing support through our online community, you may find it helpful to reach out for support from other sources such as Melanoma Focus or Penny Brohn UK.

If you think it may be helpful to chat things over in more detail with one of the nurses here, please do give us a call. We can often explain things better over a spoken call with the opportunity to ask questions. 

Best wishes,

Carla, Cancer Information Nurse Specialist  

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.  

Ref: CC/ KHe

Thank you Carla, so kind

I am a bit confused about the 31 day/62 day and which applies to me

Last Monday the 19th I had a meeting with my Dermatologist following an MDT and I was told my treatment plan.

Is it now up to 31 days or 62 days before I'm seen as they both seem to say the same? 

My treatment plan is PET, WLE, Lymph removal and Immunotherapy. This seems to be even if my PET and lymph nodes are clear

Thank you 

Hi Essexgirl200,

Thanks for getting back in touch. My name is Amy, and I’m one of Carla’s colleagues on the support line.

Waiting times can be confusing. In England, Scotland, and Northern Ireland the current targets are:

• no more than 2 months (62 days) wait between the date the hospital receives an urgent suspected cancer referral and the start of treatment.
• no more than 31 days wait between the meeting at which you and your doctor agree the treatment plan and the start of treatment.

It is whatever of these dates comes first. Some people get diagnosed very quickly whilst others have delays to getting diagnosed and that is why these targets run side by side.

In your case, 62 days from when the hospital received the suspected cancer referral or 31 days from the 19^th November when treatment was agreed. If you are worried about the length of time in starting treatment we would advise getting in touch with your CNS, consultant via the secretary or PALS, as Carla mentioned in her reply.

Immunotherapy after surgery is known as adjuvant treatment and is used to reduce the risk of the melanoma coming back in the future. This is often considered if you are stage 2b or 2c. This may be as part of standard treatment or as part of a clinical trial. Your cancer team will be able to explain why they feel you will benefit this – even if the PET and lymph nodes are clear.

I hope this information helps to clear things up for you. We often find we can help more by exploring these questions over the phone. If this is something you think would help, then please don’t hesitate to get in touch via our support line on 0808 808 0000. We are available 7 days a week, 8am-8pm. Or you can post any questions here again and we aim to reply within 2 working day.

I hope this helps.

Best wishes, 

Amy C, Cancer Information Nurse Specialist 

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

Ref: AC/ UH