Hello everyone. I am here to get more information on my 93 years Mum's melanoma on her left upper arm.. She has recurring Melanoma, two years after her original surgery to remove the original nodule. She now has several new cluster nodes surrounding the original Melanoma lump on her arm. Our local cancer nurse told me today (after sending her photos) that it is highly likely to be metastatic. Does this mean that the Melanoma has spread to other organs? My Mum has no symptoms and feels generally well, albeit frail as a 93 year old. She has also recommended that she be referred by her GP to Macmillans for help and support as the melanoma is 'on the move'. Does anyone else have similar experiences? She has no symptoms at the moment
Hello Loopyloo55, I’m sorry to hear about your Mum's melanoma. The word metastatic just means melanoma that has spread it doesn’t necessarily mean it’s spread to major organs. My melanoma has always been described as metastatic as no primary was found, and I was diagnosed when it has spread to many lymph nodes and I was feeling unwell. I had a week in hospital when they did scans and a biopsy and then between diagnosis and starting treatment I was referred to Macmillan who were part of the GPs palliative care team. A nurse came to assess what I needed, she gave me a pack of information on a 24 hour number that could speed up any pain medication or visits that I needed, and asked if I wanted a Macmillan benefits adviser to call. The Macmillan nurse at the hospital was great at keeping me informed of hospital procedures and liaising with a second specialist hospital that I was referred to. That all helped with the shock of diagnosis and keeping things more positive while in limbo of not being on treatment. Thankfully that was back in 2015 and after a course of steroids I became well enough to start targeted therapy treatment, and then when melanoma was on the move again 9 months later in an ovary as well as increasing in lymph nodes I started immunotherapy treatment, the rest is in my profile (you get there my clicking on my user name).
When Ive felt despondent or disappointed that it’s on the move my consultant has said to concentrate on the fact that I feel well, and that certainly helped. I know things are going to feel uncertain until you know the extent of things. My own mother died at age 93, 3 months before my diagnosis it was not cancer related but with COPD she was very frail, so I can appreciate how you are feeling now. There is also a group for carers on here that might help give you support if you have not already joined that group, (I forgot to look).
Thank you so much for your very reassuring reply. You yourself have gone through such a lot and I appreciate you being honest with me and telling me your experiences with melanoma. It is very helpful understanding how melanoma affects people. We are all different and melanoma is not the same experience for everyone.
I should have mentioned that my Mum has refused any further treatment and just now wants to be left alone. Especially as her original melanoma surgery was quite traumatic for her, so she doesn’t want to go through it all again, and the fact that she would have to have radiotherapy or chemotherapy. It totally understand her decision and would probably have said the same myself, especially at the age of 93. At the time of her diagnosis in December, she was given an estimated prognosis of 1 year.
However, this leaves me with very little knowledge or support on what I should expect as Mum deteriorates. As she is no longer under a consultant, we have no further hospital appointments and very limited support from Dermatology. I think this is my main fear. What signs are there when Melanoma has progressed? Can I help with these in any way? Although she feels well at the moment, I am forever worrying that any little symptom is due to her melanoma. The fact that the dermatology nurse has told me to get her referred to Macmillan would seem to me that she suspects she will deteriorate relatively soon. Especially since she said that the melanoma is progressing and on the move. The new 6 melanoma clusters on her arm are getting larger. Each one of them deadly, I presume. How worried should I be?
I am obviously very grateful that she is in good health at the moment, but also concerned about her deteriorating. I am realistic however, that no one knows when or what might happen. But as her only child and daughter, I want to know what to expect.
Hi Loopyloo55, this must be hard for you, thank you for giving more information that she has refused treatment, how ever much we might understand that, it can be difficult to process. Radiotherapy and chemotherapy are not the standard treatment for melanoma, targeted therapy and or immunotherapy are the treatments for melanoma that has spread, or for adjuvant treatment to prevent the spread. I had very little in the way of side effects on these treatments but this is not always the case, as you have identified everyone is different. I hope she has made her decision taking everything into account.
The questions you asked is what can you expect and how can you help her. I can’t help with personal experience of that, but I was thinking that her GP and local Macmillan will help with questions that you or she might have. There is also a Macmillan telephone support line that would be able to arrange for booklets for you or they can be downloaded off this site from the information and support sections. I’ve put a link in to the info and support section which gives the phone number and other information.
They may be able to give you their experience of help they accessed, like hospices carers and information; how things have progressed, and perhaps how they concentrated on enjoying life together rather than focusing on the end. There are booklets in the info section that go through this, as well as what personal experience people can relate.
I am sorry to hear that you and your mother are goin* through this.
Thank you for your very helpful advice. I have called her GP and they have referred her to our local palative care team. I will also speak to Macmillan support for ongoing help. Really appreciate your help. Best regards.
