DO I PANIC???Malignant melanoma diagnosed

[Plentyapollo]

14 yrs ago DS adopted @ 6 months same year I had breast cancer double mastectomy chemo...sorted. Same year DH diagnosed stomach cancer and terminal 1 yr to live! Took trial drug & whilst he has ‘terminal’ status he is still here 14yrs later. FF this week...I have had 2 moles removed 1st moles results back after 6 days...malignant melanoma 1.02mm thick, no specialist nurse available that day & retired locum GP’s delivery of the news NOT GREAT...told ‘ this is thicker than we like, larger excision of area needed at the cancer hospital, plastic surgeon involved & no treatment. Dye will be injected to see if it’s travelled if yes lymph nodes will be removed’... ‘I have seen patients in your position die within 6 months and also ones live 3 years even 5 years’!!!! WTF. DH & me used to knowing stages/next step/treatment options! Got to wait 8 days to see specialist nurse & upto 2 weeks to see consultant... I have moments of terror/panic/& feeling can’t be alone which I’m quelling quite well around a teenager! Feel as if I’m in a darkly humourous drama. Is it really no treatment?? No hope?? No life to live?? Any positive stories PLEASE

GP's delivery of news NOT GREAT The understatement of the year. I'm so sorry. I think the fact that he's retired is highly relevant. I'm not a medic, but I know that MM is one of the conditions where new immunotherapy-type drugs are not just 'in the pipeline' but being used with significant success.

On a personal level, my nephew in law, aged 40, had an MM removed from his leg 3 years ago. Yes, it had travelled to the lymph nodes in his groin, so they were removed, too. He's fit and healthy and has run 2 London marathons for Macmillan. He has regular full-body scans and wears a compression stocking for lymphoedema (sp) but otherwise you would never know. Apart from surgery, he has had no other treatment, but it's reassuring that there is some if he needed it.

6 days is too long to have to wait! Have you looked online for MM support sites? I know that the section of Health Unlocked that covers ovarian cancer has a nurse patients can phone for information and reassurance. There must be something for MM, too.

Hopefully someone with more info will come along soon to help.

I’m so grateful for your reply... I was frightened to look, diagnosed Friday spent Saturday Sunday & yesterday numbingly ridiculously ‘busy’... and now annoyed enough to come out of fog. Will be doing something constructive today... have already called DH cancer nurse specialist she’s finding out her equivalent in MM dept. Just need to hear of people’s stories... again many thanks & wish you & yours well x

Hi Plenty
Obviously you will be worried but definitely no need to panic.

My Dad had MM when I was 17 (I'm 50 now!) and he is still alive and well!

The area of MM was massive and really scary looking but it was on his scalp so wasn't obvious and had probably been there ages. Fortunately it hadn't spread and he had it removed and that was that. No other treatment needed at all!

He's never had a recurrence.

I too had MM when I was 28 (53 now!). It was in my groin and I was initially told I had a 3-5 yr life expectancy. Fortunately it didn't get to the lymph nodes and a
wide excision was deemed sufficient, though I was very closely monitored for another 10 years, with no recurrence.

Treatments have drastically improved over the years so try not to fear the worst.... easier said than done I know.

I hope you get some reassurance soon.

Thank you madyogafan. Demolitionduo. Brilliant & settling to hear from you I’m grateful & I wish you & yours well... Going to see specialist nurse this morning we politely but firmly pushed local hospital to see skin specialist nurse but no response & then rang DH cancer nurse @ the cancer hospital...heard within the hour SO VERY WRONG. The situation this time...the waiting, the poor delivery, the lack of written diagnosis is NOT what DH & me have experienced before & it worried us more than was necessary but also is NOT standard practice or following guidelines... I’m so sorry for those with fortunately less experience than us that have had to go through this. Our previous experience with Macmillan 14 yrs ago was less than useful/helpful/positive & we couldn’t rely on them... cancer isn’t 9-5 & not all patients are elderly needing a sympathetic ear or need breast care nurse wearing own clothing low cut top full cleavage on display!! Yes this really did happen. Or need two cancer nurse specialists crying when confronted with my DH diagnosis on same day as my chemo started. The first contact this time isn’t boding well!! We soon learnt that the adage ‘one day at a time’ worked and is helping me now... staying positive somehow implies that I am to fail if I have moments of terror/panic/tears NOT TRUE.

My parent had 2 MMs removed with wide excision. They hadn't spread at all and it is now just monitoring, no further action needed and there was no return. Fingers crossed same applies to yours.

I know 4 people who have MM removed and all are alive and well. 1 had left it 18 months before he saw the doctor. 2 had wide excision and 1 had lymph nodes removed but thankfully it hadn't spread there.

I hope you get positive answers soon.

I dunno if panic ever helps.

My ex had one removed from his back when he was 18...he's 40 now

Saw Specialist nurse profuse apologies for Fridays delivery of news. Tumour stage 1b. NOT 2c!!! (Already understand status can change after surgery but one step at time) Wants DH & me to write separate account of the GP’s visit. Will do it... don’t want anyone to have that experience EVER. No results for 2nd mole yet. Date for Cancer hospital to see plastic surgeon 12/12 Wednesday. Feeling calmer... just want to know result of other mole. ALWAYS best, after cancer diagnosis, to speak talk to a cancer specialist...whether that be nurse surgeon consultant. Please summon the strength to push to see one if not available @ local hospital appointments.

At my darkest time I can’t tell you how grateful I was for all your messages... I must have re read them a thousand times... thank you

OP

My mil had a large one removed with a wide local excision.

This was about 8 years ago. She is fine.

My friend had mm - had spread to nearest lymph glad so had excision I think. He had it 4 years ago. Wears compression leggings to deal with lymph/swelling and is absolutely covered head to toe in sun. Understandably. Is well. Has 6 monthly scans.

That sounds promising. My first point of contact, apart from, fortunately, a very good GP, is my local, general hospital. I've found that they have a much lower threshold for doomishness. I can understand why. It makes sense for them to over, rather than under, react. But it's v alarming for the patient.

I was misdiagnosed by my local hospital for a v large ovarian cyst. Inoperable. Just chemo. Fortunately, the protocol was to refer me to the nearest specialist cancer centre. The first words my consultant said to me were, 'Well, I think it's benign and will be operating in 13 days' time'. From the same scans. I later got 'a million apologies'. I know I'm incredibly lucky, but will never forget that dreadful fortnight in limbo between the 2 hospitals.

1b sounds much better. Fingers crossed for the results on the other mole. One day at a time is v good advice.

Close family member had MM on leg, wide excision and it had spread to lymph nodes, which we had to INSIST were tested as the Doc didn't think it necessary. Thank god we did as several lymph nodes needed to be removed. This was three years ago, all clear now and has regular check ups, no further incidents and fam member is feeling no ill effects.
There can be really positive outcomes to MM, wishing you good luck.

Had MM 10 years ago. I needed 2 wide excisions, luckily it hadn't spread to the lymph nodes, after a couple of years of regular check ups was given the all clear.
I was told that it was MM over the phone by a woman from the admissions department booking me in for further surgery. She had no idea that this was the first time that I was hearing that I had cancer. I was 8 months pregnant and spent the next week in terror with the most horrific images of the future playing through my head. Hopefully speaking to your consultant/surgeon will be a more reassuring experience. Good luck.

Just had call specialist nurse... 2nd mole histology not back but mole has been sent off for further testing??? Why? No advice or reasoning able to be given!!! Going to see plastic surgeon at cancer hospital tomorrow without histology available for mole on stomach... wasn’t expecting this

Tummy mole benign. Leg mole Malignant melanoma diagnosed. Stage1b. Sentinel lymph node removal No Evidence of Disease. Left with open wound on back of shin...skin graft not taken will, advised, take months to heal BUT I am here. I will be taking one day as it comes and will def be learning this from the experience.
Panic NEVER is useful
Locum Dr reported and will not be delivering any more results to patients in this clinic.
It has been a VERY difficult 3 weeks not least having to act normally for 14 year old DS over Christmas.
I’m still very grateful for the posts here given at a time when everything was uncertain.