Wide Local Excision & Sentinel Lymph Node Biopsy

Hi Paul

I’m so sorry for what you are having to go through. I too am waiting for the same two procedures you’ve just had, booked in for 10th November. Although i haven’t got any positive story of my own yet you’ve done the right thing by coming here people are so understanding. 
Nobody would blame you for feeling gloomy you’ve got a lot going on. As hard as it is try to think positive for your own sake. 
You’re in my thoughts 

Hi Paul , 

My story is there if you want to read it . I am 2 doses into immunotherapy ( pembro ) my spot was 2.5mm and traces were found in 2 tiny nodes at my ear. 

so far so good with the immunotherapy but like you it’s mentally I struggle so much with. I have also accessed the 6  free sessions ( I have had 3 so far). So I am hoping this counselling will help me rationalise my thoughts. 
don’t apologise for sounding gloomy as it’s better to get your thoughts out than keep them in. 

Hi Amccl - it's really tough isn't it. Regarding your immunotherapy what is the main aim/goal at the end of it - have you been given that sort of information ?

Hi Paul, I had similar op but on my leg by my knee back in August. Skin flap to close the WLE. It's a 6cm x 5cm L shaped scar. Lymph node biopsy in groin done at same time. I can reassure you that I was never in any pain from the op. Took a total of 5 paracetamol in the 12wks since I've had the op. I did get a couple of infections requiring antibiotics but it's healed well. Like you I took it very easy for about a month. But mentally struggled as I couldn't get my head round the fact it was just a mole that caused all this. Plus I couldn't walk far or drive for 7wks so I felt locked in my own home. I had a couple of telephone calls with a counsellor which helped but then a friend of mine has been diagnosed with breast  cancer and its been really helpful talking with her.  

I'm starting immunotherapy tomorrow. First of 9 doses. I'm very nervous but my friend is also having chemo and has told me what to expect plus the chemo nurse phoned and was really reassuring. 

I tested positive for BRAF gene plus given i have 100+ moles I'm high risk so immunotherapy is necessary to mop up residual cells in my lymph system as picked up by the PET scan I had done.  All the best with your recovery and keep us posted how things go for you x

Hi Paul x 

so what I have been told is there is no evidence of any stray cells in my body BUT they can’t rule out there are not  any hiding ready to attack somewhere.

So my 2 options were 9 doses of immunotherapy ( pembro as an adjuvant treatment to increase my chances of nothing growing elsewhere) or be monitored and see how things go.

For me the immunotherapy was my only choice I am only 41 and hope that the immunotherapy does it’s job and nothing ever grows elsewhere in my body. 

Hi Sarahlou - cheers for replying. What immunotherapy did you have ? I hope all went well today.

Started today- pembrolizumab. Home and feel fine  

Hi Paul G1,

Sorry to hear your news and I can understand right now how you must be in shock and see only dark places.  I felt it was the end of my life and my daughter and I started planning my funeral, albeit in a black humoured kind of way!

The waiting for scan results and adjuvant treatment was hard and even though my scans are currently not showing any lesions this doesn't lessen the fear and dread of recurrence.  I'm just about to have my 3rd dose of Pembro.   I guess I am taking one day at a time right now, clearing out belongings I don't really need,  keeping busy so I don't think too much about melanoma (I'm was a cancer and palliative care nurse so my knowledge is a hindrance!).

Once the scars healed and immunotherapy started I found it easier not to think of the future every day and so I'm just plodding along.  I'm 58 and have a 21 yr old daughter so I don't want to go anywhere soon. Some days are black emotionally and I head for my alottment to dig and be mindless. The 6 sessions of counseling sound like a good starting place Paul G1.   You haven't mentioned any scans you've had and I hope they're all clear.  Please let us know how you're getting on.  Thus is a place to be honest and there's no judgement. We're all dealing with terrible things and there's no right or wrong way to be.  Best wishes to you.

Hi Allotment lover, thanks for your response. I had a clear CT scan in September (after my Aug melanoma diagnosis and before my Oct SLNB and WLE). 

Im clearly high risk as my nodular melanoma was very thick and so I’m not expecting the SNLB to be clear. 

I’m just struggling to avoid feeling permanently scared, sad/depressed, anxious about what the future will be. And not sure I will ever be the same person as I was if that makes sense. 

Paul

Paul it’s so difficult mentally, things that have helped me is staying off google ( I was obsessive looking at stats , info, deaths the lot) resulting in me being in a dark place. I have also started counselling, hypno therapy and some reiki. Quite frankly I am willing to try anything that helps me find myself again.