Hello Gary TG and thanks for posting

I am sorry to hear about your situation and appreciate this must be an anxious time for you. 

It is best to take things one step at a time and try not to over think things until you have all the facts about your situation.

The oncologist looking after you will be in the best position to advise you about what may need to happen next in terms of further treatment as well as what follow up you need and what the future may look like for you.

Every cancer is different in terms of the type, stage (size and extent of the cancer) and grade, as in how aggressive and fast growing the cells are. All of these factors play a part in how successful treatment is and what other treatments may be offered to treat or to try and prevent a cancer recurrence in the future.

Immunotherapy as you say is a key treatment for some melanoma patients which has significantly changed outcomes for many patients. It is only the oncologist involved in a patients care who can say whether immunotherapy is suitable for them and their type of melanoma and what the percentage benefit may be. Doctors often run several tests on the cancer cell genetic makeup to identify any relevant gene mutations to select treatment.

Already it seems from your questions to us that you have areas you wish to discuss with the oncologist when you see them. Has all the cancer been removed from the histology report?, do you need any further tests carried out?, any more treatment needed or recommended?, what will follow up look like for you?. You could also ask if there are any current clinical trials that you would be a suitable candidate for.

I hope you know more soon and that everything will work out well for you.

Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Best wishes

Naomi

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.

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.

Hi GaryTG,

I'm guessing from you having had a (failed) SLNB that you are Stage 2b or c? Last year Stage 2b & c patients were included with Stage 3 patients for receiving a period of adjuvant drug treatment, in order to help stop melanoma spreading or recurring. So although it doesn't seem it, it's actually a better time to be diagnosed Stage 2 than it was 18 months ago when only surgery was the option. With the drug treatment will come regular scans but I believe they are usually CT scans - if they show up anything suspicious or if you presented with something worrying they may do an MRI. PET scans aren't routinely offered unless there is a need for them.

With regards to the 'success' rate for immunotherapy - the stats you are quoting are for 10 year survival for Stage 4 patients. 52% survival rate due to immunotherapy is far better than the 10% before it became available. In 5 years time there will be even more data & it's hoped that the survival rate increases. There are no survival stats, as yet, for adjuvant immunotherapy for Stage 3 patients as it was only made available to new patients 6 years ago - it will take another year or so to produce those stats. I do know that I have several fellow Stage 3 friends who are still No Evidence Of Disease after having immunotherapy since 2018. The stats for having recurrence/spread at Stage 3 before 2018 were 60% chance - if immuno is working so well for Stage 4 patients it's hoped the stats for Stage 3 patients will similarly be improved. For Stage 2 patients, no stats will be available as to it's efficacy until about 2030. 

Please also remember that, for BRAF positive patients there is also targeted therapy available which is more ammunition in the arsenal. Have you been told your BRAF status yet? All melanoma patients carry the BRAF gene but only 50% are BRAF positive. It's generally known to be a more aggressive melanoma but I'm BRAF positive & my Stage 1 melanoma took 13 years to spread and I'm still No Evidence of Disease after 15 years at Stage 3 so not all are aggressive (unless I'm just lazy)!!

So, depending on your BRAF status you will either be offered immuno (if Braf negative) or a choice of immuno or targeted therapy. It's usually a 12 month course with regular check ups & scans. If all goes well at the end of the course you will then be monitored for a period of time. Asking about drug trials is a little previous as you will already be offered drug treatment unless you have an underlying health problem that means it wouldn't be advisable. If you want to see if there are any drug trials for Stage 2 patients this is a good resource to check https://melanomafocus.org/melanoma-trialfinder/?gad_source=5&gclid=EAIaIQobChMInp-P-oSEiQMVKzsGAB3sqTrfEAAYAyAAEgKZIvD_BwE but be aware that most trials are only open to patients who have unsuccessfully tried other drug treatments first.

I hope this helps. I've sent you a friend request so that, should you want to chat further we can do so by private message. Take care & good luck,

Angie (Stage 3 melanoma patient since 2009)

Thank you for such a helpful and informative reply. The info concerning BRAF was most welcome. I had no idea such a thing existed. I did try to accept your friend invitation. It takes me to a page that says I have no friendship requests??? If I can find it, I will try to send you a friend request. I would like to keep in touch. On a separate matter, my reply to the original replier Naomi has also disappeared. So the first line of my reply to Lyns21 doesn't make sense??

I deduce that my melanoma is stage 2B (my Breslow thickness was 2.6mm). I had to look up the definitions of 2B and 2c. I had not been told. When I have asked what stage I had, I had been told a) a stage that began with 3xxx. At the time I asked if that meant stage 3 and was told , "no". At that time I wasn't even aware of what stage 3 meant. When I asked on another day, I was told that there were two versions of staging: one was a "clinical" description. I can't remember what the other version was. I rather felt that I had been asking a question that didn't deserve a descriptive reply or explanation. I just left confused. I know consultants must give the same information to people day after day but if they would just take an extra minute to explain it could make things clearer (and reduce anxiety in the process). Thanks again for your full reply.....