Suspected Melanoma

NiaM I read your post and I recognise where you're at. I , like you, discovered a mole on my back in April 2023. I had no idea how long it had been there but after squeezing and it reacting differently to a normal "plook"  I realised I needed a doctor to look at it. My GP  referred me to a dermatologist who took a biopsy and the sample was diagnosed as malignant and I as stage 2 melanoma. I was sent for surgery to check the Lymph nodes in my armpit and during that surgery the surgeon identified cancer in my chest. After a scan I went for more surgery to remove more from my chest. By this time I was now told I had stage 4 cancer and I started an immunotherapy course which involved going into the hospital once every 3 or 4 weeks , can't remember which. Unfortunately the immunotherapy went badly because  the drugs attacked my Thyroid or pituitary gland and rendered  my Adrenal glands useless. At this stage , Dec 23 I was hospitalised for a few days and finally floated out of the ICU on a cloud of Steroids. After coming round from that I was put on a course of targeted therapy which I understand is basically oral chemo therapy where I take 9 pills in the morning and a further 3 in the evening. I give blood samples every month and am scanned every 3 months and then discuss the results with my oncologist. Over the course of this saga my oncologist identified material in my lungs and also possibly in my brain. After my last scan the oncologist could not see any material in my brain and no increase in my lungs. The cancer has stopped spreading ...for the time being. Throughout all of this the initial freak out of dealing with fact I have cancer has resolved to a simple acceptance. There's nothing nice about the surgery or the drugs except the knowledge that they're keeping me alive, it's an uncomfortable process but when I consider what other people and particularly young kids go through with cancer or other diseases I consider myself lucky. For me I did not tell my family until after the immunotherapy failed and I was hospitalised , I believe that was a huge mistake . I cannot overstate the beneficial effect of having their love and support....I'd say that has changed my life. Also I get huge comfort from the macmillan nurses who take my blood samples once a month or answer any questions I have by telephone, I don't think twice about calling them. Trust me , tell your family and get their love and I hope your test results come back OK and clear . But if not there's still a way to go and everything to hope for 

Hi Elbibi,

Thank you for sharing your experience, it means a lot. I am so sorry you have been through such a terrible time and I really do pray that things continue to improve for you. The whole experience sounds terrifying and lonely. 

I also have no idea how long the mole has been on my back, but because it was flat when I discovered it, I wasn’t sure that it was anything to worry about and as I have never used sunbeds or sunbathed excessively, it didn’t occur to me that I could be a skin cancer candidate. Naive, but that’s the truth. Looking through thousands of photos it definitely was not there at all

in 2019 but it is there in a picture from 2021. So at least 4 years

it wasn’t until I started feeling sensations on my back that felt ‘crawly’ that I thought I might need to get it checked. It had also grown so is now around 5mm in diameter but still relatively flat.

I’m 45, my children are 19 and 16. One of them just started uni September gone. I don’t know if it’s fair to worry them even if it is as bad as I am thinking it’s going to be but I hear you and I will speak to my close friends for support during these times although so far the ones I’ve mentioned it to or asked to look at it have kinda brushed me off and said it’s fine. It clearly isn’t hence the face to face.  

it sounds like you have been on a rollercoaster. How are you actually managing now? 

X

I had stage 4 metastic melonma which spread to several places had immune thereapy now three years clear hun x

That is wonderful news. Do you still have regular scans and checks? 

was yours similar to mine as well. I’m so worried x

Yes you have scans up to five years after hun iv got another next month 

I had s massive tumour on my arm which had to be cut out x

That sounds terrible. I’m so glad you had it removed and I hope all is well at your next appointment. Please keep me posted and thank you for sharing. 

x

Yes will do hun x

Hi Niam I’m so sorry your going through this with no one to talk to.my husband had melanoma on his arm back in 2004 he had surgery but needed no other treatment. In September 2024 he went down with a hacking cough that just wouldn’t go away ,he wouldn’t go to the doctors as a lot of people had this 100 day cough.in November I finally got him to see a doctor .on 18th December he was diagnosed with metastatic melanoma which is not curable but he is starting immunotherapy treatment on Monday .doctors reckon this cancer in the lining surrounding his lung has stemmed from the previous melanoma on his arm .i understand how scared you are,we have had 2 months of waiting tests and shock results but there are so many different treatments now and we are putting our trust in the hands of the amazing melanoma team .as for your headache I too had headaches for days that wouldn’t shift but once I calmed myself down a bit and decided to be positive they stopped.i pray your appointment will go well.always here to talk to xx

Hi Janabells,

thank you for taking the time out to share your experience with me - I genuinely appreciate it. 

I am so sorry to hear about your husbands recent diagnosis and my thoughts and prayers go out to you and your family. 

I really do hope the immunotherapy works well and keeps the cancer at bay for many many MANY years to come. I have read a lot of posts (probably too many!) and it looks as though immunotherapy has worked amazingly for a lot of people. I hope it’s the same for your husband too. 

Please do let me know how he is getting on, and you as well, as this affects you both. 

the headaches are definitely a concern but I really don’t know whether it’s a real symptom or stress and I can’t remember whether my head has always so tension like or not. I’m literally reading into everything and spiralling  

I will post updates as I go along in the hope that it may be helpful to someone else in the same position. 

thank you for your kind words and prayers. 

xx