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Hello Alottment lover, welcome to the online community. I’ve just read your profile as well as the above, it sounds like you are having a really tough time at the moment. What gets me is that the mind often seems to make these waiting periods far worse than the disease symptoms themselves. I’m in a period of uncertainty myself at the moment, but things are ticking along, my various groin lymph nodes keep fluctuating in size on each scan for over a year now, you’d think I’d be used to it but then a comment from a consultant makes the uncertainty loom rather than the comfortable well that’s seeming to be normal for me. 

Do you know how long you have to wait for results? 

Its good that we are no longer in those times prior to immunotherapy, that you mention in your profile. Back in 2016 before the NHS was about to approve Pembrolizumab the newspapers were full of good reports of Jimmy Carter (ex USA president) who had melanoma that spread to his brain and had cyber knife and Pembrolizumab as his treatment in the US and became no evidence of disease. That was my rallying call to be more positive when I had to change from targeted drug Dabrafenib onto immunotherapy Pembrolizumab. Sometimes though my dark thoughts just need to be acknowledged before it’s possible to move on to the more positive ones. 

I hope you are doing ok in your wait.

Thank you for your reply, waiting is the hardest part. My CT scan said" no sign of metastatic spread but there's an enlarged neck lymph node and a brain aneurysm".  As a nurse I can read between the lines so last Tuesday I had a fine needle biopsy. Says 2-3 days but nothing yet.  I seem to be getting all my info from the skin specialist nurses over the phone!

I'm sorry to hear you have fluctuating groin nodes, what can make them swell and then reduce?  Covid vaccine perhaps? Stress?

I have severe depression, my 20D has depression, mood swings, gynae issues and is probably on the ASD spectrum.  I'm all she has so the thought of dying and leaving her breaks me. 

1. Xx

Hi Allottment Lover, it’s not easy when you have a time limit and results and ready at the right time. It sounds like the CT scan report doesn’t think the enlarged node and brain aneurysm are connected to the melanoma, or it’s a different style of reporting than I’m used to. On mine if they are not sure and need further investigation by a biopsy they’ve commented metastatic melanoma?.  I think I might have assumed when I first read your post that the scan or at least yourself thought they possibly were melanoma related hence me bringing up Jimmy Carter. Enlarged nodes are a nuisance we are told that they often fluctuate, sometimes because of infections, the covid vaccine I have seen a mention, I’m assuming that’s more likely in neck nodes than other nodes but don’t know, stress I have not heard mentioned before.

With me they have strongly assumed groin nodes are because of recurrence of metastatic melanoma, and previous needle biopsies confirmed that to be correct those times. When they removed a node 2 years ago the surgeon said the node was sticky and surrounded so some of the fluctuations I’m assuming is because of this process of the immune system attacking things not just due to melanoma alone. They have mentioned on one of my scan reports before necrotic melanoma, so there must be something about the cells that they could tell that previously. 

Hearing that you have a brain aneurysm must take some getting used to, I read the NHS info on it, I am assuming that was a shock for you, and I hope you have no symptoms. When I had my diagnosis back in 2015 my mother had recently passed away so I made use of counselling offered to me I hope you and your daughter are having some help. It seems you both have a lot of thoughts to try and acknowledge and let pass by until you know more.

Hi KT,

News at last...inconclusive!

So PET scan to be booked and neck dissection if necessary for goodness sake!

More waiting, alottment is keeping me busy as is the charity shop I volunteer at.

My daughter and I have having fun with a little too but of black humour which suits us right now.

I've declined the SSNs as I'm a palliative care nurse myself and even been a Macmillan nurse too therefore I cannot bear listen to their words which I've often used myself.

Take care,

Alottment Lover xx

Hi I’m sorry you have more waiting, glad you’re able to keep yourself busy while things work themselves out. If you need an off load you know there’s space here.