Hi, I'm new and worried

Hi Worried partner,  good luck with your husbands Pet Scan. 

I was only diagnosed when my lymph nodes were affected back in 2015. There are targeted therapies for those that are BRAF positive and immunotherapy for both BRAF types of patients. I have had targeted therapy Dabrafenib and also immunotherapy Pembrolizumab.  If you click into information and support there is info about melanoma and also all the treatments available for each stage. We all have growth at different rates, and different ways to keep positive while we wait. If you need me to give any links to information please ask, I imagine latchbrook will. Welcome you soon as well. 

You could also join the group Carers Only - Discussion Forum for a partner perspective as well. 

Hi K TatHome, thank you for quick reply. It is really kind of you to reach out and to give me some further info as I am really unsure what to expect. What are BRAF positive therapies? If you don't mind me asking, how long had you been aware of the issue before you started treatment, and are you all clear now? I hope you are and I hope there is hoep out there for everyone going through similar. Best wishes. 

Hi worried partner, my long story is in my profile which you can read by clicking on my user name. I thought I had anxiety or depression after my mum passing away in April 2015, by July I had seen the go several times and on the last visit with big visible lump in my abdomen which DR GOOGLE said might be a hernia, I was admitted to hospital via GP & A&E and had a few scans, and a biopsy guided by a scan. 

It was about 6 weeks after being in hospital I started treatment. The biopsy showed melanoma in my lymph node and they tested if there was a dna change in my BRAF gene and there was. Those that have the mutation can have tablets that target that change in protein. I had them back in 2015 and as I’m no longer clear I’m going to start them soon again. 

It helped me to know as much as I could about melanoma so that I could understand the info from consultants, my husband wasn’t that keen at first but has been my rock so I can talk to him about what’s happening, and have visited patient information conferences to gain any new info. 

You may want to talk to the information and support officers at Macmillan on 0808 808 0000 who can send out info or You can print from the site. Or you may wish to hold off until you know what path he’s on and then look into things. 

I think this link 

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

Also gets booklets that are targeted direct to what’s happening for you and your husband, apologies if I have that wrong. 

Thank you that is so helpful. I will take a look at your profile - thank you for directing me to this. Thank you also for the information on what you went through and your experience of time scales. There is a lot to all this to take in. I will have a look at the resources for more information. I am really sorry to hear that you are no longer clear, but I hope that you will be again soon. 

Hi and a warm welcome to the online community

I'm sorry it's taken me a few days to reply to you after KTatHome 'tagged' me but I've been away for a few days and the mobile phone/internet signal was so poor I couldn't get on to the community.

I can totally understand why you're worried and scared so my best advice would be to try and focus on one step at a time. So in this case just concentrate on the upcoming PET scan and try not to catastrophize (jump to the worst possible conclusion). I know it's easy to say and not necessarily so easy to do so you might find reading this article on how to ease worry when waiting for the results of medical test results helpful.

Also don't beat yourself up if you're not 'positive' all the time. It's impossible to be completely positive every minute of the day when faced with a cancer diagnosis but there seems to be so much out there that tells us we must be positive if we want to beat it. This isn't true. You not being positive won't have any bearing on whether your partner's consultants successfully treat him or not but what it will have an impact on is your mental well being. Someone told me at the start of my 'journey' with melanoma that worrying won't change the outcome but it will make you miserable in the meantime.

Let us know how your partner gets on with his scan.

x

Hi latchbrook, 

Thank you for your reply and reassuring words. I know I do really need to wait for the PET-CT scan, but I am so worried as I have read that a metastatic melanoma cannot be cured. Do you know if that is always true? 

Also, if you don't mind me asking, you also have had or do have melanoma, I was wondering how you have been treated with this and if you have any experience that will help me process what might happen or what can be expected? 

Thank you in advance for your help and support. I feel so lonely, so I really appreciate it. 

Hi

I suppose it perhaps depends on how you define 'cured'. I don't think the medical profession like to use that word, as melanoma is a sneaky little blighter and can keep popping up, but there are people in the group who have previously reported that they are 'no evidence of disease'.

My profile details my treatment which was basically a biopsy excision to see what the lesion on my arm was (melanoma) followed by a wide local excision (WLE) to remove extra skin and any stray cancer cells all around the site of the melanoma. I also had a sentinel lymph node biopsy (SLNB) to see if the melanoma had reached my lymph nodes. As it hadn't I didn't have any further treatment but had regular check-ups every 3 months for 3 years and I'm now coming to the end of 6 monthly check-ups for two years.

I think from what you've said your husband's primary hasn't been found on his skin so I don't think he will have a WLE or SLNB. However, your husband could always clarify this with his skin cancer nurse specialist (SCNS).

x

Hi and thank you for your quick reply. 

Yes unfortunately we cannot see where on his skin the melanoma is. All we know is that it has been growing and growing in his lymph node and I don't know where else until we have the scan so I am petrified. I just don't know what to expect. 

It is very scary when you don't know what will happen next  but, as I said before, try to stop catastrophizing as it isn't doing you any good. For all you know it hasn't spread anywhere else. Have you spoken to your GP about how all this is making you feel so that they can help you?

Hi I had an appointment booked today at 12:00 to speak to my doctor, but they haven't called. I will try my best to stop focusing on the worst - it's just so difficult.