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Malignant melanoma

(74 Posts)
growstuff Mon 02-Dec-24 16:57:46

It's just been confirmed that I have (had) a Stage 1A malignant melanoma. I've had a biopsy and it was caught very early, but I'm still reeling a bit after having had breast cancer two years ago.

I've been told that I'll have another op to remove more tissue, so I'll have a bigger scar than I have now (it's already about 3 inches). I've also been told that I'll have at least two scans - of the area where the melanoma was and whole body. I was just wondering whether I should expect anything else. Does anybody have any experience?

marymary62 Tue 10-Dec-24 16:06:39

I wish you well and didn’t mean to sound at all dismissive, I hope this all turns out ok for you, it sounds like you have a good medical team and will be well looked after.

HelterSkelter1 Mon 09-Dec-24 15:05:58

Best wishes. The waiting for results is horrid. Hope you get a call today with a plan. X

Doodledog Mon 09-Dec-24 10:12:59

I hope you get good news soon, and that the treatment starts promptly. It does sound as though it’s been caught early enough for a complete and speedy recovery 🤞

MissAdventure Mon 09-Dec-24 09:29:05

Yes, I've been reading that lobular cancer can spread to strange places, rather than the "usual" ones.
Wherever, whatever, hope its quickly dealt with.

growstuff Mon 09-Dec-24 09:13:20

Oopsadaisy1

Just spotted that your appointment is for today, wishing you well and sending you a virtual hug.

It's not actually an appointment, but the multi-disciplinary team is meeting today to discuss my future treatment. The consultant said she'd ring me as soon as she has any information, but I don't know when that will be.

growstuff Mon 09-Dec-24 09:11:43

MissAdventure

*growstuff*, is the melanoma totally coincidental to the breast cancer, please?

I'd assume there is no connection?

I don't know. I had lobular breast cancer, which is known to metastasise in strange places. The dermatology consultant is aware of my breast cancer history. She didn't say whether she thought there is any connection, but did imply they'd be making extra sure there's no metastasis.

I was reading a scientific paper about a possible correlation. A mutation in the BRAF gene is common in skin cancer patients and is connected with the loss of a protein called e-cadherin. Most lobular breast cancer patients have a loss of e-cadherin, which is why their cancer cells don't form a lump. I had genetic testing after my breast cancer was discovered, but I don't know whether I'll be tested again. I'll ask the consultant when she contacts me.

FriedGreenTomatoes2 Mon 09-Dec-24 09:09:42

BW for today growstuff. 🤞

Oopsadaisy1 Mon 09-Dec-24 09:06:45

Just spotted that your appointment is for today, wishing you well and sending you a virtual hug.

Oopsadaisy1 Mon 09-Dec-24 09:04:29

My SIL, BIL ( in Australia) and 3 people I know have had the same problem, all had successful ops with no further treatment apart from check ups.

My SIL had it on her back and had quite a large scar but apart from that she was fine.

These instances were all between 15 and 20 yrs ago, I’m sure treatment has moved on since.

MissAdventure Mon 09-Dec-24 08:07:52

growstuff, is the melanoma totally coincidental to the breast cancer, please?

I'd assume there is no connection?

growstuff Mon 09-Dec-24 08:02:20

I think it's called a dermatoscope. The doctor looked at my back with one when he did the biopsy, but when I was given the results last week, the consultant said that I would have a scan - not sure if it's MRI or CT. They're going to decide today whether I need to have a lymph node removed and tested. I've already had one removed when I had breast cancer.

Mamie Mon 09-Dec-24 07:48:27

Allira

^I understand I'm due for a whole-body scan to see if I have any other suspicious 'moles^

That sounds very reassuring, growstuff.

DH has had a nurse practitioner peering at various moles, freckles etc through a magnifying glass but not a scan.

Are you sure it was just a magnifying glass? My dermatologist uses one that picks up suspicious moles in a different light.

Allira Sun 08-Dec-24 20:26:52

I understand I'm due for a whole-body scan to see if I have any other suspicious 'moles

That sounds very reassuring, growstuff.

DH has had a nurse practitioner peering at various moles, freckles etc through a magnifying glass but not a scan.

Astitchintime Sun 08-Dec-24 18:51:26

I have no experience growstuff but couldn't pass by without sending supporting hugs to you for whatever lies ahead flowers
Stay strong and do keep in touch with your GNet 'family' - we are here for you x

Autumncolours Sun 08-Dec-24 18:45:23

I don’t have any experience of or advice re melanoma - just posting to wish you well. Sending hugs. X

garnet25 Sun 08-Dec-24 18:38:20

All the best Growstuff I hope that your treatment goes well and is not too traumatic. Please do update us on your progress.

growstuff Sun 08-Dec-24 17:30:36

Thank you marymary62. I can't put the melanoma behind me just yet because I haven't even started treatment and I understand I'm due for a whole-body scan to see if I have any other suspicious 'moles'. I don't have irrational health anxiety, so I have no problem 'managing' my diagnosis. I know this melanoma has been diagnosed early, so I'm not expecting it to be life-limiting. The reason I posted was because I don't really know what to expect in terms of treatment and was wondering if people had experience of a 1A lesion. Generally, I'm quite positive and pragmatic about my health and try to do what I can to inform and help myself. Nevertheless, I'm at a stage when I'm beginning to think that I should have a season ticket for all the scans I've had (for breast cancer, bone density and neuropathic pain) over the last couple of years and there are times when it gets me down a bit. There's an MDT meeting about me tomorrow, so hopefully I'll know this week what treatment is planned.

Thank you everybody for the informative and positive posts.

marymary62 Sat 07-Dec-24 09:40:43

Sorry to hear you have had this diagnosis - always a shock and obviously very triggering due to your breast cancer . . My 15 year old daughter had a dodgy mole and despite a family history of melanoma (red hair ) she did not get great treatment - had a biopsy - inconclusive - 3 years later at 18 (in the middle of first year at uni) it was a Stage 1B malignant melanoma so she had a very large excision - 10 cm. No skin graft. No other treatment available at that time other than regular checks for 5 years . It hung over us all like the sword of Damocles and I don’t need to tell you how much guilt I felt . Affected our mental health versus badly. My daughter is now approaching 40, with a beautiful little boy, and has had no re occurrence. Her scar is a fine white line that she wears as a badge of honour as a cancer survivor.
You will be absolutely fine . Do not spend time worrying about this - you caught it early. You will be monitored. There are very many new treatments now. Live your life and put this firmly behind you - compartmentalise it to a tiny space - if you can’t manage this then seek some help.

mrsgreenfingers56 Tue 03-Dec-24 17:22:49

Had two MM, one on my leg and another on my arm. Had deep very intensive surgery and nasty scars especially on my leg who hey who cares when you are still alive. Leg was stage 2 and arm was well sorry can't remember.

Had to have check up's every 6 months in just my undies where the Consultant checked me over. Am very fair, blue eyes and lots of moles and very much an outdoor girl. Father had two MM on his back and sister one on her leg.

Follow ups carried on for 5 years but then diagnosed with stage 2 breast cancer and the MM agreed to extend my visits for another 5 years.

So grateful to be still alive and seem to have got through it all but not nice, you just have to get on with it. And so sorry to read of some sad cases on here.

growstuff Tue 03-Dec-24 17:16:23

Thanks for all the positive comments. I know it's been caught very early, so I'm not too worried about the long term prognosis. I should know next week what treatment is being planned, but I guess I'm impatient. I should be grateful for all the scans I've had over the last two years, considering that the NHS is short of scanners - I just wish they were being used on somebody other than me! hmm

rosie1959 Tue 03-Dec-24 16:51:38

Wishing you well Growstuff my husbands first scar was around 3 inches or probably a little less the second op was around 5 to 6 inch scar. As I said his was 2a so also offered sentinel lobe biopsy from what our cancer nurse told us this was offered from 2a and above.
As his second op was clear of cancer all the treatment he will have going forward is a Lymph node scan and regular check ups at the hospital. If the Lymph node scan is ok he will require no further treatment.

Jennajim Tue 03-Dec-24 16:11:24

I had melanoma 17yrs ago, 6inch scar on leg plus lymph nodes in groin removed,, check ups every few months,for 6 yrs scans,, pet scans,,still here to tell the tale,,, it is scary but letting you know it's not all doom and gloom. Wish you well.

growstuff Tue 03-Dec-24 15:58:47

It sounds as though you've had the same as I have Flanet, although mine have been closer together.

My breast cancer was diagnosed in 2022. I had lobular cancer and two lesions were found. Initially, I was advised to have a mastectomy, but in the end I opted for a substantial lumpectomy and a breast reduction on the other side, so they more or less match. I had radiotherapy and take an oestrogen blocker, which does have some side effects, including hair thinning and bone thinning.

I've got over that now, so the melanoma diagnosis was a blow. There's going to be an MDT meeting on Monday to finalise my treatment plan, but I was wondering in particular what kind of scar I'll have (I already have quite a long scar from the biopsy) and whether I'll have radiotherapy and/or have to take any more drugs. I know I'll have at least two more appointments with scans after the op because the consultant told me.

Cossy Tue 03-Dec-24 15:55:14

Whiff

Growstuff this goes back to 2000. I know there are better treatments for malignant melanoma nowadays but this is my husband's story. Warn you it's it's in detail if you don't want to read it.

October 2000 my husband came home from work he had been on site and thought he had caught his face. He had black hair and bushy beard and moustache. When I looked it was in hair line between top of his right ear and near his eye. It was bleeding . So patched him up but looked at our big medical book and it looked like just like a malignant melanoma. So next day got him an appointment with our GP who said it was a bleeding mole. Knew it wasn't so asked the receptionist which of our GP specialist in skin conditions. So he saw him, next week we saw a consultant dermatologist. He said it looked like a malignant melanoma but as it was so close to his eye needed to see the plastics consultant. But he did have the skin cancer McMillan nurse at the hospital to come and see us. 2 weeks later saw plastic consultant who says it was benign I said it wasn't. My husband had his biopsy on 27th December 2000. Had to walk to the hospital in the snow as we where snowed in . Had his biopsy under local anaesthetic.

January 2001 the consultant apologised to me it was a grade 4 malignant melanoma and given 5 years to live . He had the cancer removed it was 2mm so they had to go 2mm below the cancer to get it all and 2mm around the area . They took the skin from the left side of his neck for the skin graft . He had cut his beard down to goaty. Luckily my husband had good muscle deficiency and his eye didn't droop otherwise they would have had to pull it up.

He had 30 stitches in the graft and the edges of the skin went dry and died and the nurse had to do what was called picking and that involved pulling off the bits if dead skin . It was painful but my husband stayed still even though it brought tears to his eyes. We had to go every week for 3 months . The stitches where removed after 2 weeks and the graft healed well. He had a large oval scar on his face .

Only me and our children knew he wasn't going to live . It was very important to my husband now one knew he was going to die. As in his words he didn't want to to treated like a dead man walking . After the 3 months just went very month then every 3 months . We had to check his body for lumps every week.

Summer 2003 he had a cough . His consultant had read about a special blood test that showed the smallest cancer cells but it took time . September 2003 cancer was found after having a CT scan with dye. October 8th our world fell apart. We had lived with the sword of Damocles hanging over us and now it dropped. 6 tumours 3 in his right lung one in his chest and 2 by the optical nerve in his brain . His consultant had us there during lunch break he cleared the department just him and a nurse . I remember screaming and going out if the room and the nurse held me when I cried .

Went back in and he had arranged for use to see an oncologist on the afternoon. Where we where given the news he had 4 months to 2 years to live . But we knew it would be months. He would have palliative chemo every 3 weeks and radiotherapy in the February 2004 as my husband had lumps on his head that bled caused by the brain tumours. So he had a mask made to go over his face.

November 2003 had to stop him driving as he was going blind but from October to mid November he still wanted to work as he had a steel fabrication business with a partner . The men at the work took it in turns to fetch him and bring him home . But I told them he had a hour from when they got him there then bring him back . I always had to phone up after 2 hours and said to bring him home. Then I had to stop him going so he had files brought to him. Then Christmas after the holiday had to stop that.

Our McMillan nurse was brilliant it's only because of us had carers allowance and DLA. They had turned us down because my husband had been given 2 years.

Christmas 2003 we talked about his funeral as we knew he hadn't much longer . He wanted to get to his birthday which was 2nd February promised him we would get him there .

He was on the highest dose of morphine . Our McMillan nurse told us the higher dose would kill him . We had talked with the children about ending his life he it got to much for him . And I would have overdosed him if he wanted and blow the consequences.

My husband woke in the night screaming in pain he put a pillow over his face so the children wouldn't hear until the liquid morphine sent him to sleep. When he was to weak he begged me to hold it so I did .

He reached his birthday in hospital as he had collapsed. He was told the day after he had 5 weeks to live . Because of needing oxygen he came home on the Wednesday afternoon as the oxygen had been delivered and shown how to change the tanks .

My husband died in agony on the Friday unable to breath on full oxygen and on a morphine pump. I looked at the children and told my husband to stop struggling we would be ok he was unconscious but heard me he died few minutes later at 1.27 pm 6th February 2004 . I was 45 out children 20 and 16. Should say I had a phone call from the hospital as he missed his first radiotherapy I remember screaming at the nurse he was doing busy dieing to come . But I did ring back on the Monday to apologise and spoke to the same nurse .

This is my husband's story . But there are treatments now even for grade 4 malignant melanoma which can expand a person's life span . Things have improved so much in the treatment of many cancers .

Like I said this started 2000 and ended on 2004. I. Those days you where given enough morphine to kill several herds of elephants. My son took 2 carrier bags of tablets and liquid morphine to the pharmacy on the Saturday.

No one jump on me this is what happened to us.

There is a thread about skin cancer I will see if I can find it and bump it up

All I can say is “wow”

Thanks for sharing and I send you and yours the very best xx flowers

Allira Tue 03-Dec-24 15:52:26

ordinarygirl

I would ask that radiotherapy start asap after the operation.

That may not be necessary.
DH was not offered it.

Stage 1
Almost everyone (around 100%) with stage 1 melanoma skin cancer will survive their cancer for 5 years or more after they are diagnosed.
Cancer Research UK.

Immunotherapy might be an alternative if the Consultant thinks it is necessary. Oral medication.