My daughter

Dear Lynn, I am sorry to hear you are feeling so anxious which is understandable as you obviously love your daughter very much. The important thing to focus on now is that she is in safe hands and getting the very best medical treatment possible. I think part of the problem may have be caused by the delay in the diagnosis and the shock of receiving a letter after 5 months and this has created a lack of confidence in your mind. The nhs does many wonderful things but is somewhat dysfunctional when it comes to administrative matters and this can add stress to a already stressful situation. The most important thing to remember is she has been diagnosed now, has a treatment plan, and will have access to all the latest therapies. My advice for you is to keep to your normal routine as much as possible and help your daughter by organising any practical help she needs, if there is a maggies centre in your area you can go there for support as they help patients and families alike. 

Hi and welcome to the online community and the melanoma group in particular.

I'm sorry to hear that your daughter has recently been diagnosed with melanoma and I understand what a stressful time this must be for you both. I was diagnosed with melanoma three years ago and had the sentinel lymph node biopsy (SLNB) that you mention that your daughter is shortly going to be having, so if you want to ask any questions about what to expect I'd be happy to answer them.

Can I ask if you are both in the UK as normally positive results are given face to face, rather than by letter, so that you get chance to ask questions. At this stage you, or your daughter if she is an adult, would normally be given leaflets explaining what will be happening along with contact details for a skin cancer nurse specialist (SCNC) in case you have any questions. 

Hearing that someone you love has cancer is very difficult emotionally and if you take a look at this information that Macmillan have produced you will see that feeling anxious is a perfectly natural reaction. You might benefit from joining the family and friends group where you can share your feelings and get support.

To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.

When you have a minute it would be really useful if could pop something about your daughter's journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Do come back and let us know how she gets on 

x

Hi latchbrook thanks for your reply. Every morning I’m waking up shaking and worrying I really am struggling to get through the day. Xx

Thanks for your reply there are but to far away I got arthritis so can’t get far x

I know it's easy for me to say but try not to worry . Unfortunately, with any cancer diagnosis there are always stressful periods of uncertainty and waiting for results or operations you just need to find a coping mechanism that works for you. Some people throw themselves into work or hobbies, others clean the house from top to bottom (mine needs doing if you've done yours) and others find mindfulness apps or classes useful.

For most people having a wide local excision (WLE) is all the follow-up treatment that's needed. Your daughter will then have check-ups every 3 months for 3 years followed by 6 monthly check-ups for 2 years. I'm just coming to the end of my 3 monthly check-ups. In between times you/she will be able to contact her SCNS if you/she notices any changes to her skin. 

Can I ask if your daughter is a child or an adult?

x

Hi latchbrook she’s an adult with 2 children I’m happy to hear things are good with you x

Dear Lynn (), welcome to the online community, I’m sorry to hear you’re in so much distress at the moment, it’s not easy when you’re  fearing for a loved one and I’m wondering now to about the 5 month wait and change in diagnosis. 

I’m thinking did they send you the wrong letter originally, or was the original letter correct that they removed something that was not cancerous (perhaps melanoma insitu) but now that there are other suspicious moles they suspect now that the perhaps one of the others might be melanoma ? The procedures for a malignant melanoma are to remove it and then to do a further wide local excision and then (if the melanoma is staged 1b or more) to do a sentinel node biopsy to remove a lymph node to test if the melanoma has spread to that node. 

I think it’s important to not race ahead to think that her melanoma has definitely spread, and as  has said to bear in mind that she’s now being looked after carefully and that melanoma does now how some wonderful treatment options. Sometimes the thought of any surgery is just scary, for me it helped to write down exactly what I was scared of and to then look at the list to see what things I could do something about and what fears I could just acknowledge that they were there, but not impacting right now, and some that were just well for me becoming a habit of just worrying about lots of things. There are are lots of ways that people cope with anxiety, distractions of keeping busy or doing something nice so you don’t have to think about it, or research so that the thing you are scared of becomes less scary as it becomes bite size practical actions, they both have the advantages at times. A Maggies centre has people you can talk to as well as classes to de stress patients and family members. As my Maggies Centre is 35 miles away I’ve only wandered in once and had a cup of tea and a chat after a hospital appointment (I’m the melanoma patient my details are in my profile). 

If you need any links to information I’m happy to help and while writing this I can see latchbrook has given a link to a wide local excision, there’s a section on coping in the information and support pages, and as it’s Wednesday, there is usually a wellness Wednesday article on the forum discussing how people cope.

There is a carers only group and a friends and family group that you can also join, they often discuss the unique perspective of being more worried as they don’t want to show their loved one the worry. 

I am going to put some links in but feel free to browse and join the group, or ignore them. 

https://community.macmillan.org.uk/cancer_experiences/carers_only/discussions

https://community.macmillan.org.uk/cancer_experiences/being_a_relative_/discussions

https://www.macmillan.org.uk/information-and-support/coping/your-emotions/someone-close-has-cancer

I am sure there are other patients in this group who are much younger than me with mums who worry, who can tell you about their melanoma experiences if that will help you.

I hope we can all support you through this.

I'm hoping that you'll see from my experience with melanoma that your daughter may well be perfectly fine after the WLE and SLNB and the only things that will change in her life will be the follow-up appointments and being more careful in the sun.

x

Hi again

I've just seen a reply from one of the Macmillan nurses in the ask an expert section where they were replying to someone who was suffering from anxiety.  They included an number of links which I thought you might like to take a look at. 

Anxiety UK have lots of useful information and advice on managing anxiety as does MIND. The nurse also suggested that this list of mental health apps, some of which are free, might be a good place to start to explore methods of managing anxiety.

x

Thank you x