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
  • 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)

Reply
  • 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)

Children
  • 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.....

  • Hi Gary,

    You were successful in accepting my friend request so I've sent you a message with information that may be helpful. Take care,

    Angie