Angry, desperately sad and in need of advice please

Hi GLC,

What stage was he initially? The NICE guidelines lay out exactly what followup there should be for each stage. If these were not followed for any reason then you should discuss with PALS (Patient Advice and Liaison Service). I understand they can help you with raising a complaint if the guidelines haven't been followed.

Here are the Nice guidelines for Melanoma:  www.nice.org.uk/.../ng14

I am a 1b at the moment and had the wide local excision and a sentinel lymph node biopsy at the same time to check my lymph nodes for microscopic cancer cells that can't be felt on physical exam. I have been given information on how to check my own lymph nodes all over my body and how to check all my body for strange moles once a month. I am supposed to have a three monthly check up for three years which is apparently over the phone for every other appointment because of COVID but I can ring my nurse to request a face to face if I notice anything untoward at any time. After that time I get further 6 monthly check ups for another two years. 

If you know your husband's initial staging after diagnosis of the mole on his back then you can check to see if what happened next was in line with the guidelines.

Also, there are people on here and also in some of the Facebook melanoma groups who are stage 4 and are having very successful treatments. 

Best wishes,

Kate xx

Hi GLC,

I just did a long reply and it doesn't seem to have posted! I will try again.

What stage was your husband at initial diagnosis? If you know this then you can look at the NICE guidelines and check that the correct path was followed.

www.nice.org.uk/.../ng14

If it wasn't for some reason, then I would contact PALS (Patient Advice and Liaison Service) because I think they can support you to make a complaint.

My melanoma is currently staged 1b (I am waiting for results of lymph node biopsy) and I was given wide local excision, accepted a sentinel lymph node biopsy, and will get 3 monthly check ups for three years and then 6 monthly check ups for two. I understand that some of the checks are over the phone but that my can we nurse can expedite face to face appointments if I notice anything untoward in between times. I was also given information on how to carry out my own skin checks and how to check lymph nodes all over my body once a month.

The guidelines for your husband's treatment will vary based on his staging and what was found at each stage  i.e. what was found will have had an impact on what treatment route he followed.

Have a look through the NICE guidelines and it should all be in there. 

Also, there are people who are being treated very successfully at stage four. I know there's people in the melanoma groups on Facebook for example who have been celebrating having no evidence of disease after treatment at stage four.

Best wishes,

Kate xx

Hi Kate, thank you so much for your reply.  Initially he was diagnosed stage 2, with no further spread evident.  I’m just struggling how we went from all clear and no issues in 3 monthly checks, to stage 4 incurable?  Our doctor told us that any lymph nodes oils be able to be detected early with the regular checks ( though I absolutely understand there are no guarantees).  The guidance you attach is brilliant, though mentions there should be checks of ‘regional lymph nodes’ and I suppose that’s where I have my doubt as the neck was never discussed as an area to check, and I now think maybe it should have been? My husband found d his swollen lymph node only a couple of weeks after a physical checkup.

Great to hear re people responding well to treatment! We are hoping for as long as we can have, but it’s not likely to be the lifetime we had planned, and my husband will miss sharing our childrens lives with them, so it’s just heartbreaking.

I really hope you stay in good health, thank you again for your reply, support on here means the world right now xx

Hi GLC

I.eo y hore with a long life time storey. 

When I was 29 2012 I had I think  stage 2. I did a trial back then as that's all that was available.  It worked as I knew I had the drug as aposed to a possible placebo.  

As i was on the trial I had scans every 6 months. Was going to go on yearly about 18months ago and they found a nodule which was cancerous in my lung.  I had this removed and then I was put on immunotherapy which didn't work for me as caused other issues. 

In January this year 2 more lumps came up I  places that had been scanned over and over again. It didn't take long between scans for these to appear.  

I had a tumour now,  in the brain which has shrunk with gamma knife treatment and also had it go to my other organs  

I'm now know on targeted treatment that is working, just causing side effects with eyes in which I'm sitting in the hospital now to find out why. 

From what I have discovered over the year unfortunately melanoma does what it wants. No pattern to how it effects next unlike other cancers .

I have come to the conclusion its the card I was dealt. 

I also had a mole back in 2011 came up in my chest which was removed etc along with lympnodes. Years later I did ask if all my lymph nodes were gone which I had thought but then was advised they are so small and so many of them they can only remove what is seen at the time of operation. 

I have up and down days. Mostly up cos it's out of my control so no point in being down. Enjoy the hear and now. 

I'm not even 40 have 2 young  gorgeous girls and wife . I have to enjoy life. And all time now is quality time. 

Hope this helps a little. 

Hi JT Legend,  thank you so much for replying and sharing your story, I find your story not only comforting but inspiring, and I appreciate you taking the time to respond.  

I know I’m probably overthinking and in the ‘what if’ phase and I can’t dwell here for too long, I need to accept where we are and live for each good day we have, no one’s ever guaranteed any more, it just so new and raw still so I hope will take time.  

To be honest to hear your story and positivity after everything you have battled gives me hope of strength.  

I wish you And your family every happiness for as long as is possible.x

GLC, sorry to hear the news about the return of your husband's melanoma.  There are a lot of people on here who have good, positive stories about immunology treatment for stage 4 disease so I hope they pick up your thread.  I'm not very experienced on here but it's possible that some may be in the "incurable" group I think...don't be put off by the title. "Latchbrook" is a melanoma champion on here and she certainly would be able to point you in the right direction.  Stage 4 was (some years ago) deemed incurable but now that's not necessarily the case with the new immunology meds so explore on here for positive tales because they are on here!

Sending you a big hug, take care.

The group is called "living with incurable disease"

Thank you Alottment lover, I really appreciate you taking the time to think of me and reply at this time of year especially. I was looking for the group so that’s really helpful.  Take care xx

I thought it might help to give the link 

Living with incurable cancer forum - patients only

you can click on the link and it will take you there.

The group I have linked in above is for patients only though, there is another group 

Supporting someone with incurable cancer forum,

again you can click on the link, and join like you did this one. That group may have people who can identify with how you are feeling.