Initial diagnosis yesterday

Hi Denby and welcome to the melanoma group

I held back from replying to you yesterday as I have no experience of having melanoma removed by radiotherapy. However, I understand it can be used if surgery isn't an option.

Normally a suspicious lesion is removed with surgery and then sent off to the path labs for a biopsy. If it is melanoma then you will be told what type of melanoma it is along with the Breslow thickness. The depth of the melanoma then determines what stage it is. Do you know the details of your husband's melanoma?

After a melanoma diagnosis you then have a wide local excision (WLE) of either 1 or 2cm all around the original site to make sure that there are no melanoma cells left behind. The size of the WLE depends on the depth of the melanoma. My melanoma was 1.45mm deep so I had 2cm removed.

If the melanoma is 0.8mm deep or more you should be offered an optional sentinel lymph node biopsy (SLNB) which is a biopsy to see if the melanoma has already spread to the nearest lymph node.

However, if your husband is having radiotherapy I don't know whether he will also have a WLE and SLNB. He should have been assigned a skin cancer nurse specialist (SCNS) who should be able to answer any questions around the treatment he will be having. He could ask her why radiotherapy is being considered rather than the normal surgery route. I'm guessing this could be to save as much of your husband's ear as possible.

You also mention "depending on what the lab say in another 2 weeks". If it's already been reported as melanoma what further results are they waiting for? Normally there is only one report from the path labs saying whether it is or it isn't melanoma.

Personally I always mention anything to my team that's happened to me medically since the last time I've seen them so in your husband's shoes I'd mention to the urology team about the recent melanoma diagnosis.

I hope this helps but do come back with any more questions/observations and I'll do my best to answer them.

x

Thank you very much Latchbrook. All helpful info. I suspect things are not as per standard pathway simply because [I didn't know this till it happened] - dental hospitals deal with  lesions on head and neck. They spotted it when he was there for dental issues and have taken it from there. At least thanks to you I will be more aware from here on. And I have no intention of sitting in the car next time either covid or no covid. [We've both had one jab anyway at least].

The annoying thing is our old GP who we thought was brilliant [she's retired now] years ago, said it was Winklers disease [not malignant] and cryotherapied it off on the spot. But she did say it would come back. But I don't recall her saying that any action would be necessary when it did, or I would have insisted [again, covid or not] on getting it seen sooner when it did but was smaller. There must be so many such things with GPs like our new ones in hiding from their patients. I have had terrible trouble with a completely different health problem, devastating my mobility, due to this.

Thanks again, Denby

Hi Denby

It's great that your husband's dentist was vigilant and noticed the discoloured patch of skin and normally this would be referred on to a dermatologist. I have to confess that I haven't come across anyone else whose skin cancer is being treated at a dental hospital. There are plenty of people who have had lesions on their head and neck and they are referred, as far as I'm aware, to a dermatologist. Perhaps where you live they are trialling a different approach.

You mentioned in your original post "depending on what the lab say in another 2 weeks" and I wondered what results the consultant is waiting for if your husband has already been told that he has melanoma?

It is very difficult at the moment with hospitals trying to keep both us and their staff safe from the risk of Covid. If your  husband's next appointment is at the hospital could he phone you when he's in with the consultant and put his phone on 'speaker phone' so that you can hear what's being said and also ask questions? 

If the appointment is over the phone at home then again, can you put the phone on speaker phone so that you can hear and participate in the conversation?

Don't be too hard on your old GP for not realising that the lesion was melanoma. Fortunately, melanoma is still quite rare in the UK and a GP may go through their whole professional career without seeing one. Melanoma's are also tricky to diagnose as they don't always conform to the 'normal' rules. Mine was an amelanotic melanoma (pale pink/red) and my consultant, who I subsequently learned was one of the leading dermatologists in the country, said to me that it was nothing to worry about when I saw him. He only removed it because he didn't know what it was and I don't know who was more shocked, him or me, when it turned out to be melanoma.

I'm really sorry to read that your mobility has been devastated due to you not being able to see a GP during the pandemic. That must be an extremely difficult thing to come to terms with.

Take care

x

Many thanks. I am now off crutches and indoors off walking stick after insisting they gave me the gout tablets, twice [it was diagnosed by a chiropractor who was willing to see me and is knowledgeable. ] But without swimming, as a hypermobile person, it is hard to regain lost muscle and heart/lung fitness. Given the same GP at the practice that refused to accept the gout diagnosis also failed to diagnose Roger's cellulitis I have asked the senior partner to train her and will not now accept appointments with her again. Nor will my neighbours...

I have just read your reply to Roger and told him we are going to see the GP and insist they check the many small lesions on his back, he occasionally scratches those he can reach, and some are flaky topped. Have just read up on the abcde thing.

Anyway time for a cuppa and back out in the sunshine to some eco-timber treatment on our new bin enclosure, many thanks. Denby

Hi Denby

How did your husband's appointment go with his urology team yesterday? I don't suppose they were particularly interested in his melanoma diagnosis were they but I think it helps to keep all medics up to speed with what is happening with our bodies.

It's a good idea to get your husband checked over for skin lesions. He should have been checked when he was given his melanoma diagnosis. If he wasn't then he could contact his allocated SCNS (skin cancer nurse specialist) and ask if he can have an appointment to be checked.

I'm glad to hear your mobility is improving

x

Hi Latchbrook, thanks for thinking to ask. All clear mercifully, and not another for 6 months. But he is just unwell so much of the time, slumbering pushed back in his recliner. It's a combination of mental and physical I think, the trouble is when the physical stops him getting stuff done it depresses him so he then does less, vicious cycle. He had major surgery on his leg for gross sepsis in September and now on Doxycycline for life so I don't know if to blame that. But he does have odd good days. I even was reading his Epilim pack leaflet today, he's been on that for years but was switched from phenobarbital to Lamotrigine less than a couple of years ago, the Epilim leaflet says lamotrigine can make side effects worse and these include some things you could say match his symptoms. But if they change drugs again he'll have to have even longer off driving, and that's very depressing for him, and so we go round in circles...sad face.

Thanks, Denby

Hi Denby

That's good news that your husband has been given the all clear at this recent urology appointment.

Do you think that your husband could be suffering with depression? It must be very hard for him to have discovered that he now has another cancer to deal with.

Has he got in touch with his SCNS to find out when he can get a skin check?

x

Thanks. Life with Asperger's and a whole raft of unpredictable changes in life had already made him depressed. Fluoxetine had to be halved because the side effects were too bad. Obvs Monday I will have to phone and demand better action... sigh.... again....

Anyway today our younger daughter got engaged. So off to pick up a Chinese meal to celebrate.

Congratulations on your daughter's engagement Denby and I hope you enjoyed your celebratory Chinese meal

Let me know how you get on chasing things up on Monday.

x

Hi Denby

I was just wondering how you and your husband were and if you'd managed to get things moving with regards to your husband's melanoma surgery?

x