Hi, I'm new and worried

Hopefully the doctor is just running late

Hi Worried partner, if you don't mind me asking, how was it diagnosed in your partner's lymph gland? Was it diagnosed there first before the skin area?  We are all different in how it starts.  I had a suspicious mole that was removed and staged at 3c followed by a wide excision and at the same time a dye plus radioactive stuff was injected into the mole site.  This travels to the lymph gland that has been draining the nasty mole. It was removed and one either side fir testing(surgeon's choice of how many to remove).

Results showed it was in the first main gland(the sentinel gland) and one next door to it. Obviously there may well be malignant cells in other lymph glands in that area and yes they could already have zoomed off on their merry way. No way of telling that as even a PET scan only shows growths above 5cm.

So then treatment is decided on by the oncologist, in my case it was Pembro as I was braf -ve so no targeted drugs.  The treatments nowadays seem to be very effective on shrinking cells.

It's natural to think the worst to begin with, I certainly did, planned the funeral !  However with clear scans which means no tumour/swelling visible I carry on. My treatment is currently every three weeks and with no side effects as yet I go to double dose every six weeks.  I guess I have adjusted to having the treatment and having scans every three months to check for anything suspicious. Thus will go on for at least a year.

It does feel as if I'm in limbo really as I don't know what might be round the corner but some faith in the newish immunotherapy gets me through. I was diagnosed in April.

Please be reassured your reaction is normal hon, stay off Google and look after yourself. As your partner's treatment plan evolves you'll probably adjust to the changes as you go along.  Hope my explanation gives you an idea of what may happen without scaring you. Take care x

Hi Allotment lover,

Thank you so much for taking the time to reply and give me some knowledge regarding the process from your experience. It's very helpful. 

For us my partner has had the lump on his neck where his lymph node is since April. We were in intensive care at the time because of our son so put it down to stress thinking he was run down. When it didn't go down he spoke to the doctor and had an appointment and they said nothing to worry about. I knew it was growing so the doctor finally referred him for a scan and the biopsy has confirmed malignant melanoma.

My partner is having the PET CT scan tomorrow and I'm very worried because of course we know the lymph node has been growing since April and is rather big now. They can't find the suspicious mole that might have caused this which is scary as they can't remove something of they can't find it. My partner is only 38 and I'm so worried about what they will find and what can be done.

I hope that you continue to get treatment which works for you and I hope that we have the same positive outcome. 

Best wishes and thank you for your help. It is really appreciated. I welcome any information from anyone out there who may be able to help or share their experiences x

Hi Worried partner, please try not to worry about where the mole was as I'm presuming that wherever it was, it spread to the lymph gland.  It's the lymphatic system which goes round the body and that's the method of transfer to other places literally and sadly.  That's what the immunotherapy treatment aims to do, mop up any stray cells that may have left the primary (sentinel lymph gland -the lymph gland that directly drains the skin lesion itself) node.  The PET scan takes a while as they inject the radioactive stuff directly into the site then you have to wait an hour in a protected room whilst it goes round the body- he will need to take a book!  This is a scary time definitely, the waiting for any scan/operation or results is one of the very worst bits.  We get through these bits with love and support from our partners,family and friends but nothing stops the worry until the results are out.  Fingers crossed all goes well tomorrow for you both tomorrow hon,  I'll be thinking of you xx

Thank you that's very thoughtful. It is tough all the waiting indeed. 

Worried partner how is it going?

Ive just joined and seen your post, I am in a very similar situation as you and similar timescale with scans etc... My husband is also only 38. 

He originally had melanoma in 2016, it's just returned. 

My husband had his pet scan and we got the results last Monday, I'm currently sat in my car waiting for him whine he has his mri scan done.

If you ever want to chat maybe we can support each other, take care x 

Hi Loobylou41 thank you for getting in touch. I'm sorry to hear about your husband and that he previously had melanoma before. Did they find it this time because they were doing routine checks? We haven't been able to find where on the skin my partners melanoma started just the tumour on his neck.

I hope you don't have to wait long for results. It took 3 weeks for our scan to come round and the waiting was the worst. Luckily at the moment it looks like the cancer has spread to his neck only so I am hoping he will have surgery to remove that and maybe immunotherapy. 

What happened to your partner last time? Did he have to undergo cancer treatment back in 2016 and has been OK until now. I hope they can help him out again and fast. We haven't been offered an mri scan here. What does that check for? I hope you get good news it's awful not to be able to go in with him.

I would love to keep in touch. Message me anytime and I will try to message back when I can. We have 4 children in our household so it's a very busy and scary time. Lots of love x

Hi 

How are you and how is your partner? 

I'm guessing that he has had the results of his PET scan now. Does he know what treatment he'll be having yet or has he already started?

x

Hi Latchbrook, 

Thank you for messaging. Yes my partner had his PET scan at the beginning of nov and it was at that point only spotted in his parotid and lymph node on his neck. It was a sizeable tumour when it was removed before Christmas. I know it was classified as stage 3b and I believe he is to be offered immunotherapy to start soon. I am worried as in everything I read it seems he will be luckily to live more than a few more years due to the high risk of it spreading and recurring. I am also anxious that in the time that it was growing from April to December that small bits have spread around the body ready to start growing into more tumours. We have not had any more scans since November. I am very worried as my partner is not even 40 and I just don't know what to expect going forwards xx

Hi

It's natural to worry that your partner's cancer may be spreading in between scans but in reality most cancers are slow growing.

I don't normally look at statistics, but as you said everything you'd read seemed to suggest that your partner would be lucky to live more than a few years, I decided to take a look at the latest ones from Cancer Research UK. These look at patients who were diagnosed between 2013-2017 to see how many were alive 5 years later.

For me (Stage 2 - no lymph node spread) 80%, or 8 out of 10 people, were alive 5 years later compared to your partner (Stage 3 - lymph node spread) where 70%, or 7 in 10 people, were alive 5 years later. Therefore, this seems to suggest that only 1 more person will die if they're Stage 3 as opposed to Stage 2. Now these don't seem to imply that he'll be lucky to live more than a few years, quite the opposite.

The thing you need to remember about statistics are just that, they are statistics, and don't take into account whether any of the 3 people who died had things like underlying health conditions, or how old they were or whether they died of something unrelated to their melanoma. Your partner is young, so he has that on his side, and I'm guessing that apart from the melanoma he's healthy and exercises, etc.

Although Google can be really helpful it can also be really unhelpful. We've all been on looking for good news stories but inevitably get sucked in to reading all the doom and gloom stories and statistics that are on there. Hopefully, your partner will be starting his treatment soon and you'll still have years and years ahead of you both.

x