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Malignant Melanoma

Meech82
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Hi, I’m 63 years old and I had a malignant melanoma removed in September. I had a skin graft and a sentinel lymph node biopsy. I had my results last week and traces of melanoma was found in the lymph nodes. I have a PET scan and a brain scan scheduled in the next week. I am very anxious about the scans and what they might show. I am caring for my husband who is disabled and my son who is Autistic and has severe learning disability. 
I guess I am looking for words of encouragement from people who have been through a similar experience.

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    Hello Meech82, 

    I just wanted to say hello and welcome you to our forum and I hope that I will be joined by other members of our community who have been through a similar experience to the one you describe. 

    I am sorry to hear that traces of melanoma were found in your lymph nodes and I wanted to wish you the best of luck for that important PET and brain scan next week. It is normal to be anxious about these scans and I am keeping everything tightly crossed for you. I also wanted to mention another valuable member of our community  who has extensive experience of malignant melanoma and who might be able to shed some light on what to expect. She will certainly understand what you are going through at the moment. 

    Should you wish to talk things through with one of our cancer nurses, feel free to give them a call on this free number 0808 800 4040 - their helpline is open Monday to Friday from 9am to 5pm. 

    Best wishes and everything tightly crossed for your scans. I hope it all goes well for you, 

    Lucie, Cancer Chat Moderator

  • Offline in reply to Moderator Lucie

    Thank you, I appreciate your support.

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    Hi Meech82,

    I'm sorry for the late reply & to hear about your diagnosis. Thank you Lucie for mentioning me.

    Firstly, I hope all goes well with your PET & brain scans. What happens next will depend on their results but currently you will be staged at Stage 3. If the scans show there is no spread other than to the lymph nodes, you will be offered drug therapy and possibly surgery if the nodes can be removed surgically. Most consultants prefer to see if the drug therapy gets rid of the cancer in the nodes rather than use surgery in the first instance.

    They will test the mole tissue that was removed to see what your BRAF status is and this will decide which drugs they can offer you. Everyone has the BRAF gene but 50% of patients BRAF gene has mutated - they are BRAF positive whilst patients with no mutated BRAF gene are called BRAF negative (or wildcard). Both positive & negative are offered immunotherapy whilst BRAF positive are also offered a choice of targeted therapy. Targeted only works for mutated genes. 

    If the scans show spread elsewhere in the body, that will determine the treatment plan (and your stage alters to Stage 4). Drug therapy will be an option, as will surgery. If there are mets in the brain they may offer stereotactic radiation to target the mets. 

    It's a lot to take in & it will all be explained to you once your results are back.

    With regard to you caring for your son & husband, can I suggest that you start to see if you can put some help in place for when you start your treatment. Do you have a family Social worker you can contact or relatives that can step in? Keep everyone involved in your family's care informed, in case you need their help in the coming months. You can also contact Macmillan or your local Maggies Centre if you have one. They can give great advice. There is also a great charity you can talk to if you want to know more information about treatment - Melanoma Focus have a dedicated Melanoma Nurses Helpline that you can ring & they will be happy to help answer any medical questions.

    Meanwhile I will send you a friend request - if you accept it we can chat by private message. Good luck next week & please let us know how you get on,

    Angie (Stage 3 melanoma patient since 2009)

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