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Metastatic malignant melanome

Sam1578Sam1578 Posts: 1
edited April 14 in Diagnosis

Hi. I have recently been diagnosed with metastatic malignant melanoma in my lymph nodes, measuring 25mm in diameter, diagnosed 3 weeks ago with surgery scheduled for 10 may, and I know nothing about it. I am not seeing surgeon until 1 may and was wondering if anybody could enlighten me to the procedure, prognosis, and mainly survival rates , I apologise for being vague but have no idea

thank you

Answers

  • LouiseJLouiseJ Posts: 593 mod

    @Sam1578

    Hi, welcome to the group, although I am unable to enlighten you as I have no idea about this type of cancer.

    I am very sorry to hear of your diagnosis, it must have been a huge shock to you. When do you see your oncologist? I would definitely try and get an appointment before your surgery appointment so they can explain everything to you, which I would have expected to be done already.

    Perhaps someone else here will hopefully have some information that will be helpful to you.

    Although I don’t have the same cancer, mine was breast cancer, I do understand what it’s like to hear that news. The shock, disbelief and bewilderment, closely followed by fear and terror is difficult to navigate through. It seems our minds are bombarded every second with thoughts about cancer and treatment etc. Here you will find many, many others who have had, or are having the same thoughts and feelings, we all understand, we are here for each other. Anytime you’d like to chat, please feel free to.

    Keep in touch, let me know how you get on and if you are able to see your oncologist to get the info you need.

    Lou x

  • @Sam1578

    Hi Sam,

    I'm sorry to hear about your diagnosis and planned surgery. I am a stage 3 melanoma patient (since 2009) and my enlarged lymph node was in my groin. You don't say if you have previously had a primary melanoma (mole/lesion) removed. Have they found the primary or can't they tell where the melanoma has first appeared?

    Everything will be explained to you at your appointment tomorrow but to give you some idea of what will happen. They will arrange for a pre-op CT scan to see if the melanoma has spread to any other location. Dependant on where the node is (groin/armpit/neck) they will remove it under general anaesthetic and they remove any other nodes in the area if they think they need investigating. The amount of nodes removed will depend on whether you need a drain inserting to the area for the first few days. This drains the lymph from the area until your lymphatic system works out a new route to bypass the missing nodes. The removed nodes will be sent to histology and the results will show how many nodes were affected and whether the melanoma was contained (hadn't broken through in an effort to spread). This will determine your Staging and whether you will be offered Adjuvant Drug Therapy. You will also be told your BRAF status. All melanoma patients carry the BRAF gene but only 50% carry the mutated gene - they are BRAF positive patients. Those without the mutation are BRAF negative or Wildcard. BRAF positive patients, if offered Adjuvant treatment, have the option of immunotherapy and/or targeted treatment. Sadly BRAF negative patients only get immunotherapy as targeted therapy doesn't work for them.

    A lot to take in, I know. A prognosis is difficult for a consultant to give because it's all dependant on Staging, BRAF status and what future treatment you may be offered. Stage 3 patients have been offered adjuvant treatment since the end of last year (this is immunotherapy/targeted treatment that, until then, was only offered to Stage 4 patients). Because it's new there are no statistics available. Also, melanoma is a very unpredictable cancer and every patients journey is different. All I can do is give you an idea as to my experience - I had Stage 1 melanoma in 1996 and then it returned, Stage 3, in 2009. It had spread to one node in my groin and one in my pelvis of the 23 nodes I had removed. I wasn't eligible for a drug trial post surgery so I have only had regular check ups over the years. By some miracle I am still here, fit & healthy with No Evidence of Disease (NED) which is the melanoma equivalent of remission. I know many patients of all stages and those who are receiving drug treatments, in the main, are doing really well so there is every reason to be optimistic about the future Sam.

    Please ensure you have someone with you tomorrow in case you forget anything that is said. Also, write down any questions you want to ask that hasn't been covered by the consultant. Please let us know how you get on tomorrow and you can contact me by private message if you would like to chat. You can learn more information at the websites for the British Association of Dermatologists and MelanomaUK.

    Good luck,

    Angie

  • Navya_SharmaNavya_Sharma Posts: 1

    Melanoma is a form of skin cancer that develops in melanocytes that usually starts as a tumour. This cancer is then spread to the lymph nodes and leads to swelling of lymph nodes. After the diagnosis of the melanoma it can be treated by three ways:

    ·        Immunotherapy – in this process drugs are injected into the immune system which attack and destroys the cancer cells.

    ·        Targeted therapy – in this process the drugs are used to inhibit the release of specific enzymes which triggers the spread of cancer.

    ·        Chemotherapy – in this process drugs slowdown the growth of cancer cells by inhibiting their ability to divide.

    However, there are different types of leukaemia that can be treated by the help of stem cell therapy.

  • @Navya_Sharma

    I'm sorry but I don't know where you have lifted this information from but much of it is incorrect.

    Melanoma doesn't always spread to the lymph nodes - it can bypass them completely and go straight to the lungs, brain, liver, bones, or cause lots of subcutaneous lumps.

    Chemotherapy isn't used on melanoma as it doesn't respond to it (although in some countries, excluding the UK, USA & Australasia, it may be used without success).

    A third option is surgery and that is always used on patients. Immunotherapy and Targeted is ONLY used on Stage 3 & 4 patients.

    On Stage 4 patients that haven't responded to the drug therapies they may consider treating them with TVEC or TILs but these are rarely used & TILs is only available privately.

    You finish by mentioning leukaemia. I don't know the significance of that as it is not connected to melanoma.

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