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

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  • 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

Reply
  • 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

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