Just diagnosed with Melanoma and struggling

Hi Cambers 79, I remember my diagnosis nearly 6 years ago now and it puts your head in a spin doesn’t it. With me I was thinking of my brother in law who died of bowel cancer about 2 weeks after his diagnosis, so as my diagnosis was made when things had spread to many lymph nodes I think I was searching to find at what level I should be panicking at. I decided anxiety was normal for anyone diagnosed with cancer and so bizarrely that took some of the pressure off. There’s nothing worse than panicking when others are feeling your over reacting as that makes the feeling worse. For some friends and family who don’t understand they might still th8nk you ar3 over reacting as they will think mole comes off an£ that’s the end of it, and it is for the vast majority. 

I have not had a primary melanoma removed as one was not found with me, so I can’t help with experience of the wide local excision that I think you might me describing, and the sentinel lymph node biopsy that I think you might be referring to, but many on here have had that and can give you the link to the Macmillan info on this, if you feel up to reading about what happens next. I find it helps to concentrate on the practical stuff rather than the what ifs. 

You will get past how you’re thinking now, and if you have a key worker at the hospital mine is a Macmillan nurse they can help with the emotional side as well as the treatment information side of things.

Hi Cambers 79,

I have read enough stories that I now understand a physician cannot diagnosis a mole as benign without a biopsy. Melanoma evades textbook descriptions and I'm sorry that you had to wait. The sadness is real and what helped me was to fully understand my pathology and imaging reports, what the standard of care is, come to appointments with a written list of questions, and take time to make sense of becoming a patient. 

According to the literature https://ascopubs.org/doi/full/10.1200/JCO.18.02306, complete lymph node dissections are not done so much anymore. Likely you will have a sentinel lymph node biopsy at the time of your wide excision. 

After your CT results, you will have a better idea of how to present your diagnosis to your sons. The love in your family will be your rock.

Take care, Cindy

Hi Cambers 79 and a very warm welcome to the online community

I was diagnosed with melanoma on my upper left arm 4 years ago now but I can remember very clearly how numb I felt. Like you, I wasn't expecting a cancer diagnosis as my dermatologist didn't think my 'curious lesion' was anything sinister but wanted to remove it to find out what it was. It turned out to be an amelanotic melanoma so didn't look anything like the classic 'dodgy' mole.

I didn't have a CT scan but I did have the follow-up operation, called a wide local excision (WLE), which is standard for everyone who is diagnosed with melanoma. I also decided to take the offer of a sentinel lymph node biopsy (SLNB) which I think is what you're referring to when you say a node dissection. The SLNB isn't treatment but is a diagnostic tool to see if any cancerous cells have broken away from the original site and travelled to the nearest lymph nodes.

If you want to know anything more about these two procedures I'm happy to answer any questions.

I know it won't seem like it right now but there will come a time when melanoma isn't the first thing you think about when you wake up and the last thing you think about when you go to bed.

If you want something to send you to sleep tonight you could have a read of my story by clicking on my username or profile picture.

Sending virtual ((hugs)) your way.

Thanks for your comments. The last 2 weeks have been a whirlwind!

im luckily to have private health care through my work so in the past 2 weeks have had my CT scan which showed a lump in my breast so had to get a mammogram, ultrasound and breast biopsy done, all of which came back negative for cancer thankfully! So no further spread of the melanoma to my organs however I also had a lymph node biopsy done which showed it has spread to them. 2 days ago I had my WLE but didn’t get the SNB as the biopsy already showed it had spread so they removed the lymph nodes under my left armpit whilst doing the WLE. I’m 2 days post op and back home recovering. I’m a little uncomfortable but it’s with it! I go back next week to have drain removed and skin graft checked and hopefully get results of lymph nodes removed (although I’m not sure what they’re being tested for as they already know the melanoma. Is there) 

my head is a lot better now. I still have moments but not as much. I still have not told my kids the full story as want to wait and see what further treatment will be needed so I can explain everything to them. 

Although it has spread to my lymph nodes I’m still feeling more positive than I was a few weeks ago! 

Hi, so sorry to hear you have been going through all that. My partner had a lymph node dissection following 2 nodes testing positive at SLNB. Melanoma was detected in one more node of the additional 13 removed but as the surgeon said, we have removed them all anyway now so you should not worry about that. I hope that things go well for you and that you can continue to feel positive. It is certainly a rollercoaster and at times can feel overwhelming. One of the hardest parts for us was to share the news with close family and friends and to decide when and how much to tell. You will know what is right for you and your kids.