New Diagnosis

Hi IvysMum and a warm welcome to the Online Community. I know exactly how you feel, it's like a ton of bricks have been dropped on you. I have a different type of cancer, the very minor symptoms I mentioned to my bestie had her nagging at me to contact my GP, good job she did.

One thing we all agree on here is don't consult Dr Google, you'll frighten yourself silly with out of date information. Once your MDT have had their meeting next week things will be clearer once you have your treatment plan.

I'm sure the members here will be along soon to greet you. The Community Champ, latchbrook, is on holiday at the moment but I've tagged her to let her know you've joined and offer her support.

It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep writing the same thing over and over. You can amend or update it at any time. 

To find more information covering diagnosis and treatments there are pages covering most types of cancers which can be found on our Online Information and Support Section. 

The Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two to three working days for replies from our expert team.

Stay positive, sending you welcoming hugs B xx

Thank you so much for getting back to me…it’s the first time I have used a forum so I am a bit creaky…I will do the profile bit as you suggest…I have felt a bit lost today so it’s good to hear from someone who has experience of what I am feeling at present…

Hello IvysMum and welcome (if that’s the right word) to the group. I’m a very facts based person to and when I had my diagnosis I went into my preservation mode of turning off emotions. It works well for a bit until something unexpected turns them back on, sometimes I felt like I had to listen to music to tell how I actually was feeling about things, instead of how I was wanting to cope with them. 

Without being able to read your profile, or having a longer post I’m not sure exactly where you are in your melanoma process. You have mentioned that you are stage 3, but I’m not sure if that means stage 3 in that it has been found in your lymph nodes or wether you mean your melanoma was a T3 which is measuring the size of your melanoma which has already been removed. 

I don’t happen to think googling is bad and there is a big difference between Dr google which to me means endless searching for scraps of medical info that may well be out of date, and googling of helpful info from good sources like the Macmillan info and support section, cancer research, melanoma focus, or the videos that the melanoma patient conference have, and I think it’s good to be prepared and understand what the next steps might be. It hasn’t always been the case for me, when I was in hospital 6 years ago I was surrounded by student drs and a consultant who had ruled out a hernia for the big lumps I had but mentioned possible lymphoma!. A caring dr overhearing the conversation stayed behind and asked what I understood from what was being said and arranged for a Macmillan nurse to come and see me everyday for a few minutes until I felt hospital after a biopsy of one of the nodes. She advised me not to google and I didn’t and so didn’t find this site until a few months into my diagnosis of melanoma. In one respect for me I’m so glad I didn’t google Lymphoma but just got on with putting the waiting for more information to one side. But then after the diagnosis I felt more comfortable knowing what I could. Fact based first to explain any terms and then some real life experience. 

I’m hoping that your first step here has got some emotions sorted and if there is anything you want to know of our experience or any links to info you might like us to help with please just ask. I have not had a primary melanoma removed as mine wasn’t found, I was only diagnosed when my lymph nodes biopsy came back as melanoma, to which I laughed, as although I’m classic fair skin, blue eyes and had red hair I had mostly avoided the sun, although had played a lot of sport. So I understand your shock and I’m glad you’ve got good support around you, (my husband is amazingly supportive to). There are plenty of others on here who have had a excision biopsy, a wide local excision (WLE) to get a clear margin of skin around the melanoma site, and a Sentinel Lymph node biopsy (SLNBj to see if some cells have spread) and some who have started immunotherapy or targeted therapy to help prevent any potential stray cells from spreading. I’ve had both of these later treatments but as I started treatment 6 years ago, different treatments often come along. If all the above seems like gobbledygook I’ve put a few links below but you sound like you may have already found some info.

https://www.macmillan.org.uk/cancer-information-and-support/melanoma

https://melanomafocus.com/information-portal/pda/

https://www.cancerresearchuk.org/about-cancer/melanoma

The people here who have been through things I’m sure will help with their experience. 

Thank you so much KTatHome for taking time out to respond to me….what you describe in terms of emotions is very true for me and I can sometimes seen as a much more ‘in charge’ person than I really am….my diagnosis was given on Friday following a biopsy 3 weeks ago…unfortunately as things stand at the moment it was done by phone so I was frantically taking notes and trying to ask the right questions whilst praying that my phone signal would hold up, not ideal….but the Dr was exceptionally kind and said a lot of info would be posted to me and also gave me numbers for a key worker and specialist nurse….the biopsy of the mole was measured as 2.6mm which she described as a 3….the MDT team is on Tuesday this week and she explained things would move quickly from here…..lymph node biopsy, further excision, genetic testing…..it’s ironic really how of my family I have always been the one who has hidden from the sun but as a child growing up in the 60’s there was no sun safety and getting burned in the summer was the norm for the kids playing outside.

I know there is never a good time for a diagnosis but I have found this particularly hard as my mum passed away in April….mum was 87 and a fiercely independent woman…but for me the last few years have been challenging as Mums carer and only remaining child I have had to put a lot of things on hold looking after mum…..my promise to myself after her passing was to start living my life again….I have to develop a new mantra of living each day of my life.

Thank you for the links which I will take a look at today….at present I am doing my best to not just focus on my diagnosis…which is hard. I had a tough morning yesterday being so afraid for the future….but later in the day with the help of some music I settled into my craft room and started to cut out a Luna Lapin….please google she is very cute!

Thank you again KT

Hi IvysMum, six years ago last April my Mum at age 93 passed away and my diagnosis came in the July while I was still grieving for my Mum. I found the grieving process for my Mum ended abruptly as I then started grieving for me. 

Your melanoma was a T3, so you are stage 2 at the moment and I hope nothing further is found when they do the sentinel lymph node biopsy. The genetics test is to find out if you are BRAF positive, as that means you also have targeted therapy drugs if needed. I am BRAF positive and so I had Dabrafenib as my first treatment as I had too many nodes affected to have surgery to remove them, that drug worked very quickly to reduce my tumour size. My MDTs always meet on a Monday, and then clinic days are always Wednesday’s it good to know the days as you then know that there will always potentially be a hold up between say a scan, the results, the MDT and clinic to discuss or amend treatment plans. My key worker is my Macmillan nurse, the specialist skin cancer nurse(s), my go to person or team of people to ask questions, put things in perspective, flag up any problems mid clinic, and to liaise when a scan is delayed or when surgeons and oncology have different opinions.

I have just googled Luna Lapin, that was the best kind of googling much nicer than researching melanoma ! I am always on the look out for new things to use as a distraction, or make life more enjoyable. One of daughters would love that kind of thing, she’s into cross stitching at the moment (as well as computer games). In these covid times the only way for us to meet is either by video conferencing or by our avatars rushing around our creative animal crossing islands, watching fireworks and having a virtual cup of coffee together ! 

I have found that the ability to put things aside and enjoy the time between appointments is very very useful, so good for you. I think I needed a bit of help with that at times and so I had some counselling arranged by my GP, and near my hospital is a cancer centre which does courses, to help with coping strategies. I enrolled on one when I was in a bit of a blip and wanted to make sure I had a variety of strategies. I’m so glad I did that as my go to stress relief was walking which wasn’t possible for some weeks during the lockdown, and on some days now due to the heat. 

I hope others pop in to say hello, especially those going through things recently or you could start a new post in treatment and diagnosis if you have any questions to ask about for instance a WLE or SLNB. 

Hi KTatHome and IvysMum

Just wanted to say thank you KT for offering so much info and support - that's what makes these forums so special - there's always someone to offer helpful advice and a shoulder to lean on when we're at our lowest. My forum is Womb cancer and I'm more knowledgeable there!

All the best to you both, B xx

Thanks for volunteering as a champion and keeping an eye out. (I used to volunteer myself for a few years). 

Hi IvysMum and another welcome to the online community

I can see that KTatHome has already given you lots of useful advice and I hope you're beginning to feel a little bit calmer, if that's the right word. I know how hard it is being diagnosed Stage 2 myself just coming up to 5 years ago now. 

Hopefully after the MDT you'll know exactly what you'll be offered treatment wise. For me it was a wide local excision (WLE) and sentinel lymph node biopsy (SLNB). The SLNB is not a form of treatment but can be useful in seeing if the melanoma has spread to the nearest lymph node. If these are the options you're given I'm happy to talk you through my experiences so you'll have an idea what to expect.

x

Thank you KT, I have shown my daughter your response as she is a great support to me….your explanation has helped us both understand much better the terminology used and where ‘I’m at’….it’s a completely new vocabulary.  Again, thank you 

Thank you Latchbrook I have just got an appt for a scan later today….MDT tomorrow so I’m guessing I will hear of next step….thanks for explaining the terms, as I mentioned previously it’s a whole new vocabulary!…I am finding the feedback from people amazingly helpful in developing my understanding and calming my overstretched mind…a lot to take in …thanks again