Melanoma

A support group for anyone affected by melanoma to come together, share experiences, and ask questions.

My daughter

lynn1963
Posted by

Hi I’m Lynn and new Iv come as a few friends have told me I need support I feel ill from stress about my daughter. She had a mole removed in July. They told her it was non cancerous it took 5 months for this letter to arrive and now they have said it’s melanoma. This has knocked us sideways and I’m not coping. Monday she has to have more moles removed and either before Christmas or first week of January she has to have a lymph node removed under her arm. I went to dr to ask for help as I’m not coping. Was told by receptionist they put me on assessment list no guarantee I’d get a call back.well I did and the dr told me that me being stressed is not a medical problem and said I don’t need to see any dr. But I’m not coping I’m anxious I need something to relax me I’m trying to be strong for my girl but I’m failing any advice would be very much appreciated thank you x

Johnty
Posted by

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. 

best wishes

jane

 “ A trouble shared is a trouble halved “
latchbrook
Posted by

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

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

lynn1963
Posted by

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

lynn1963
Posted by

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

latchbrook
Posted by

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

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

lynn1963
Posted by

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

KTatHome
Posted by

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  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.

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

latchbrook
Posted by

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

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

latchbrook
Posted by

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

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

lynn1963
Posted by

Thank you x

lynn1963
Posted by

Thank you for all your advice and support I’m still navigating around the group at the moment the first diagnoses was sent was ok but they sent that mole for more tests and the hospital lost it then found it again and then said it was a melanoma. On Monday there’s more moles being removed and either before or first week after Christmas they are taking a lymph node out under her arm 

Katybb
Posted by

Hi ,

I’m sorry you’re here and having to go through this with your daughter. I can imagine it’s all feeling very overwhelming.

Obviously the whole experience is incredibly scary and it’s not surprising that you are struggling to deal with it. Would it help to be very specific about exactly what you’re most worried about? Sometimes getting it out there can help - and no one here is judging. I found it incredibly annoying after my diagnosis that friends were telling me to ‘stay positive’ and that ‘I’d be fine’. I wanted to talk about what could happen and why I was scared, but they struggled to handle that.

I’m sure that as well as fearing the worst for your daughter, you might be worrying about how everyone will cope practically with her out of action after surgery, if there are grandchildren to think about? There are lots of us here who will be able to help address some of those specific worries, and perhaps help put things in perspective, if that might help? 

I was considering stopping paying into my pension to start with, but I’m still here, getting clear scans and going strong!

Please don’t feel like you’re alone.

Big hugs,

Kate x

Kate

lynn1963
Posted by

Hi Kate thank you for advice I’m just worried what this lymph node removal will be and how long are we going to be waiting I honestly feel so ill with all the stress. Constant headache feeling sick shaking Iv tried talking to the dr and he wasn’t very supportive just said it’s not a medical condition so never gave appointment.

I'm trying hard to not show my daughter how I’m feeling she got 2 children 14 and 4 she’s in London and I’m in Cardiff I wish she was here I don’t know how much more I can take before I breakdown. Xx

Katybb
Posted by

That must be extra hard if she’s not nearby and you’re worrying. How does she seem to be coping herself?

It sounds like they will be removing the closest lymph node to her melanoma to check it hasn’t spread. This is usually done under a general anaesthetic, and I think they try to send you home the same day - although that might depend on what time the surgery is and if she has any other health complications- I’m not sure.

Either way, there’s going to be plenty of waiting from now on I’m afraid. Fingers crossed the next lot of results will be all clear, but even if they are she’ll be followed up for years (which is a good thing!) so there’s always more waiting to come!

Is your daughter talking to anyone? She’s probably trying to stay strong for her own kids and might welcome an opportunity to talk honestly with you? I think I would have appreciated hearing my mum telling me she was worrying, but she’s never said anything like that to me.

What’s your usual coping mechanism with other things? Talking, distraction, alcohol?? This is going to be a good few months of uncertainty, so you’ll need to find some kind of strategies to help. You’re obviously having physical symptoms from the stress from what you’ve said, but have you actually had a good cry? I was watching a few tv series during my treatment that made me really sob quite regularly. It was completely exhausting but a great way of using up that ‘anxious energy.’

xx

Kate