Newly diagnosed

Hello , I can understand how you feel, and no I didn’t think your mad, I think your having a very normal reaction to the stressful situation that your under at the moment. I have an opinion that dealing with stress and anxiety is a life skill and unfortunately life events kick in and throw us into the deep end when we haven’t yet learnt how to swim yet. It doesn’t help if people are standing on the side lines  who have never swam but have seen the olympics and think that it must be easy and you should be able to deal with the anxiety, just like that. 

I wanted to welcome you to the online community, I don’t think you should worry that your worrying or getting anxious, I think it’s perfectly natural to get anxious it takes time to digest any change in circumstances and feel comfortable with it. When I felt anxious about having melanoma, it helped me to to see what other people felt and to read the information and support pages. For me I accept that there are going to be times when I get anxious, and I’m not going to be anxious permanently I can predict when I’m going to get anxious and I can distract myself, and come to terms with what I’m anxious about, and accept that I can’t be cool care and collected all of the time, but I can try and manage how much time I spend worrying. 

I agree that all the symptoms you are feeling could be just anxiety. I also understand if you think they are not, as I felt really ill and thought I was just anxious after my mum died in 2015 when after a few months continuing to feel tired and and sick and nauseous finally after a huge lump appeared, I received a diagnosis of type 2 diabetes and stage 4 metastatic melanoma (no primary). I say this not to worry you but to say sometimes anxiety is your bodies way of telling you something isn’t right, I wish it would just text us clearly ! And that sometimes a lump is just a harmless cyst and sometimes it might be cancer and we don’t always have control over what we are thinking or what our bodies are screaming at us. 

There is help though to get calmer though, many ways, and I’m glad you felt you could share how you feel with us. I wanted to ask how you’re coping and what you thought you might do, and what was worrying you in particular,  I have some links that have helped me but we are all different, and I didn’t want to just leap in with how I cope today. I’m around off and on to have a conversation (with gaps in, as I Potter about as are other members here) or you might want to talk to the telephone support line and the Macmillan staff. There number is after my signature.

Best wishes

Hi KT 

Thank you for taking the time to respond. I am really scared and not coping well and up and down. They have removed the cancer yet I don't think I believe it.

I am also worried about the grading of the cancer and the risks of it returning. I have a child.

I don't know what treatment I will have yet so that's another source of anxiety.

I keep feeling overwhelmed by panic and the what if's.

Hi KT 

Thank you for taking the time to respond. I am really scared and not coping well and up and down. They have removed the cancer yet I don't think I believe it.

I am also worried about the grading of the cancer and the risks of it returning. I have a child.

I don't know what treatment I will have yet so that's another source of anxiety.

I keep feeling overwhelmed by panic and the what if's.

Hi , Its very natural to think about the what ifs, my what if was about leaving my husband alone, my action was to write my will and a power of attorney just in case the what ifs were soon, (back in 2015 I had a statistical prognosis of less than 12 months) in fact and the time I thought it was definite as at the time of that prognosis I wasn’t on any treatment except steroids to help me become well enough for treatment. That done I had counselling arranged through my GP, but a Macmillan nurse also said they could tap into that kind of help as well. It wasn’t until 9 months later that a treatment became available that was a game changer and I became measurably clear of all cancer that was in my pelvic and abdominal lymph nodes and ovary. 

At my hospital when I got to a stage of no cancer and no longer on treatment I concentrated on getting fitter, and eating healthier, things that would help my immune system continue to fight and cancer that might be too small to measure. It helped to think positive that my journey was over Id beaten it, as that’s what many statistics show now that once on immunotherapy and you become a complete responder, no evidence of disease that things will stay like that. Every scan I had a bit of anxiety the what if I’m not still clear, and by 1 year later I was confident of my next scan, I used to anticipate the scanxiety and arrange days out to distract me and have some enjoyment. There are courses on mindfulness that you might be able to access through a Maggies if you have them at your hospital or by what ever is local to you, your skin cancer nurse will probably know. I joined a cancer rehab session at a local gym and found a walking netball group, and I’ve found volunteering here was  another positive move. 

Theres a section in information and support that you might want to read, https://www.macmillan.org.uk/information-and-support/coping/your-emotions I found it helpful, the in my area button might also find any support groups or other help that available to you.

You mention that you are worried about the staging and are perhaps looking for info on what next with treatment. I can fully understand that as when you have that info you feel more in control of what’s happening. 

https://www.macmillan.org.uk/information-and-support/melanoma/treating/treatment-decisions/understanding-your-diagnosis/staging-and-grading.html#306976

I’ve put some info in about staging above and there are people on here who have had or are having adjuvant treatment on here to help the cancer to not return, this is new in the last year and a bit as before people were just on watch and wait. 

Do you know what your BRAF status is? I’m BRAF positive so I had targeted therapy that only applies to BRAF positive, but immunotherapy is applicable to BRAF positive and BRAF wild. 

I don’t know if you’ve looked up information on treatment, I can give some links for that if you’d like, and answer any questions from my own experience.

Best wishes

Thank you for sharing your journey. You have given me hope. I know very little as I am waiting for reports back.i know one node was affected and that clear margins were obtained but no more than that. Hoping to know more soon. They have mentioned  adjuvant treatment but haven't said which type.

I found hope very important, when I felt that a prognosis of less than 12 months meant that was definite it was worrying but hearing of people ahead of me and still doing well and in long term remission was comforting. The new drugs giving long term remission and coming close to the cure word, makes older statistics on line out of date. 

Here’s some info about targeted therapies and immunotherapy incase you haven’t come across them.

https://www.cancerresearchuk.org/about-cancer/melanoma/treatment/targeted-cancer-drugs-and-immunotherapy

Waiting for treatment is a hard time, it’s all change and uncertainty isn’t it. If I’m having a time when I worry a lot I try and jot down a one word worry, but keep busy and not think about it til a worry time. My time was 10 to 6 and at 6 pm I need to start cooking. Sometimes my preparation time was during my worry time, it’s good to chop veg sometimes ! 

I also try and think of 3 positive things before I go to sleep. I once went to a mindfulness session, (I didn’t like it), for others it’s really helpful. my husband has a mindfulness app on his phone that he likes. I just prefer gentle walks in the countryside. 

KT,

I had an ultrasound yesterday and they found an enlarged gland of 13mm on the right side. They aren't sure if it's an infectious post surgery or the cancer has spread. Having a CT scan this week. I am so scared. I can't settle and feel really off colour with tiredness. 

I can understand you are scared, so was I after I was first diagnosed and awaiting treatment. Sometimes it just takes time to look at things from a different point of view. Lymph nodes are usually about 10mm so 13 mm is catching it very early if I get this right that it’s a lymph node or lymph gland that we are talking about. The CT scan isn’t long away so you are being promptly investigated to check for any further potential melanoma, so that’s all good. 

I know you weren’t sure if the feeling off colour and tiredness were anxiety or something more sinister, and it can be horrible in that period of uncertainty waiting to find out if there is further melanoma or wether everything is still fine. 

I try to put it out of my mind until I get the results, limit the time worrying on it to just a few minutes a day. At the moment I’m waiting for my scan results, I have a lump  and to be honest I have let myself accept that my lump is a return, but I’m not saying you should as your lump is a lot smaller. For me it feels ok to accept it may be back as I have beaten this before to get no measurable disease and I can concentrate on that I’m not out of treatment options yet. 

I have found sometimes that it has helped writing down what I’m most concerned about and noting if there is anything I can do about it. Over a year ago I was feeling just out of sorts with the possibility that it was back again in my node, I just didn’t want to back in that place again, it took a while to just try and change my view from not wanting the biopsy results and starting treatment to wanting to move forward to find out what I’m facing to start that treatment and try and carry on being positive waiting to see if the treatment has worked. 

It’s  fine to express what you feel here and use the Macmillan support line as well, they can just listen if that’s what’s best for you,  or can give help with how to deal with the wait or answer questions on what’s next. 

Your skin cancer nurse has a duty of care for the physchological side as well so if they have any centres giving help she will probably know about them and be able to refer you, at my hospital theirs a Maggies centre I ve been in to mine once as it’s near the hospital but that’s 30 miles from home but they have free tea and a chat with so helpful people that can get your mood back up again a hope before getting back home. 

Please let me know how you get on or if you have any questions you think I can help with. 

Hi KTatHome,

Sorry I didn't respond to your message. I hit a bit of a low until I was told by the consultant that the results of my CT scan were insignificant and nothing to worry about. 

Have an appointment with the Oncologist on the 10 December. Just received a copy of the histology report which I don't understand so have emailed the Mcmillian Nurses at the hospital to see if they can explain it in full or arrange a further appointment so it can be explained. 

It appears most of the Melonoma they found was Insitu Melonoma. The lump they removed in July was the invasive melonoma.. 

Still feel like I am in limbo and hoping they can give me more detail about grading. You have given me hope and I want to thank you for that  xxxx