Genetic testing

Hi

I'm really sorry to hear that melanoma was found in your daughter's sentinel lymph nodes recently.

I'm presuming, and hopefully someone will correct me if I'm wrong, that the genetic testing you mention is to enable the doctors to see which treatment would be best for your daughter. There is more information about it on Cancer Research's website here.

You have probably been told that your daughter is Stage 3 and that there are targeted drugs and immunotherapy drugs which are now available for Stage 3 patients to help reduce the risk of the cancer coming back. Again more information on these drugs can be found by clicking here.

There are quite a few people in the group who are on these types of treatment and who will be able to share their experiences with you if this is offered to your daughter.

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Hi

I’m wondering if it was consent for tissue samples for UK Biobank (their work involves genetic testing), rather than genetic testing that you will get the results of... 

Although I’m sure I gave consent for genetic testing as part of the general consent for my surgery, I don’t really remember any discussion around that bit - although I did specifically ask about the results. However I also did give consent for Biobank to take samples - both of my tumours and of the drain fluid after my full groin dissection. That was a very separate consent conversation with Biobank staff specifically.

I work in clinical research, so I didn’t hesitate to consent to that - in fact I was personally quite excited that I got to contribute!

It’s fairly standard that when researchers are given access to samples, they don’t get any identifiable information that links those samples to your daughter. So there are no privacy concerns in terms of insurance companies or anything like that. The benefits of taking part in research are usually for other people rather than yourself, just because it all takes so long, but with your daughter being so young who knows what discoveries may benefit her in the future!

If it wasn’t for research purposes, but more specifically just for gaining more information regarding the specific genetic mutations involved in your daughter’s tumour, then I personally wouldn’t hesitate. The more information you have, the more targeted (god forbid) any future treatment can be. 

There are always dilemmas when taking consent regarding children - obviously they can’t give informed consent themselves and this has to be done on their behalf, but this doesn’t involve any additional procedures (they’ll use the samples they’ve already taken) and either way will contribute to a knowledge base on melanoma. It might be worth discussing it with her - she might be quite interested!

Best of luck whatever you decide, and I hope you’re all slowly coming out the other side of this. Xxx

Hi , you’ve had two really good answers from latchbrook and . I know my lymph node back in 2015 was tested for the Braf gene, but can’t remember the consenting bit. It was so that they knew if I could have the targeted treatment Dabrafenib which has now been superseded by Dabrafenib and Tramatenib together, and also encoranib I believe. So the plus if this is what their doing is to find out if these treatments are suitable. 

Like Katybb, I’ve also consented to research being done on my node that was removed and on my regular blood samples, it’s part of a mel resist investigation trial, it hopes it identify changes it blood samples when a progression occurs, and for my node to look at why it grew and became resistant to Pembrolizumab, I’ve also consented to have them discuss with me again and my next of kin, in the future (morbidity warning) wether they want my body for medical research, at this stage it’s just not ruling it out in the future. I have found that when I had my node removed, and when I had a needle biopsy that there were more staff involved but nothing detrimental. As Katybb has said its to help further research to improve treatment for others further down the line. 

The trial nurses gave me a phone number to ring if I had further questions they have protocol to follow to ensure that permission is given freely with as much info as you need. 

I hope your daughters still doing ok.

Hi

How are you and your daughter? Did you manage to find out what the genetic testing on your daughter's tissue was for?

I hope your daughter's wounds are healing nicely and she's feeling well. How are you doing?

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