Melanoma with unknown source.

Hi DaisyRed

I'm sorry to read that you've been diagnosed with melanoma with an unknown source. My melanoma was on my arm so I don't have the experience you're looking for. However, I do know how scary it can be waiting to find out what the treatment plan will be.

I can see that you've been chatting with KTatHome in the secondary lymph nodes cancer group and, as you know she had an unknown primary diagnosis too. There are others who have posted previously about unknown primary melanoma and clicking here will take you to the threads which mention this. You could have a look through some of those and respond to any where you think they might be able to help you further.

It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when answering or looking for someone with a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Let us know how you get on at your appointment

x

I was Melanoma of unknown Primary when diagnosed in March 2020, with enlarged lymph nodes in the armpit (axilla) . 4 of the 15 were cancerous and I was Staged at 3c. 

There  is now quite an array of evidence that there is a small advantage to being MUP, over the 97% who have an identified primary site. 
best of luck

Hello TIm, Timbo699, I’m so pleased you have replied in this thread there are not many of us melanoma no primary found around. I hope immunotherapy ( Pembrolizumab? ) is doing well for you still. 

Hi DaisyRed, welcome over to the melanoma site. I’ve been a bit quiet I’m afraid while contemplating surgery and recovering from it, but I’m slowly feeling myself again, and sickness touch wood  is getting better.

 I have always counted myself lucky to be occult primary, no primary found as I’ve reasoned my own immune system dealt with it as the most logical explanation, until I was under too much stress to do so anymore. The big difference between me and you and Tim is that my diagnosis came when too many lymph nodes were effected for surgery you two have both had lymph node dissections so they may decide that that is sufficient, and be offered close follow ups by scan, or you may be offered adjuvant treatment as I’ve spoken of before, or given the choice with their recommendations. Remember to ask what they recommend and why. 

I am sad , did not reply further, and we don’t know why not as I would have liked their insight into the TIL treatment that was starting in July.

waiting is the most awkward bit in my opinion but you are well practised in that now unfortunately like me and many others. 

Hi KTatHome

Nice to hear from you Glad you are feeling better. Such a lot to take in. I have done my profile now. It is the waiting and not knowing. I just hope they will not give me any more treatment. I think taking out so many lymph nodes ie enough! I don’t know why they took them out both sides when they only did a biopsy on one side. I am struggling with the after effects of the op. So much pain and swollen underarms. I went back to see the nurse and she said swelling was normal and if it didn’t go down or got any bigger to get back to her. That was a couple of weeks ago and although it got bigger it is slowly going down now although I think is is just spreading around. The right arm is worse which of course is the one that was clear. My husband is behind me all the time saying don’t lift anything. Sorry to go on. You saying perhaps the dissection may be enough gives me renewed hope! Have you heard of people that have not had any more treatment? As I said in my profile we are hoping to fly at the end of the year so the waiting is horrible. Thank you for your help and advice, I am sorry I don’t know anything that will help you.

Thanks 

DaisyRed

Hi Latchbrook

Thank  you for your reply. I have now put the details on my profile. Appreciate your advice and help. This is all quite new to me and such a shock. I suppose I won’t be able to talk about treatments until I see the oncologist on the 1 Dec. I did have a mole on my chest at least a couple of years ago and it is gone now. I told the surgeon and showed him a picture of it but he said difficult to tell if that is the one as it is now gone. Again I will show the oncologist. Have you heard of anyone that has not had any further treatment after the lymph nodes removed? 
Regards

DaisyRed

Hi Tim

Looks like we are in the same boat. I had lymph nodes removed and I am hoping that will be the end of it and they will just keep an eye on me. Did you have to have treatment and what sort after the op. Did they take them out of both armpits? I don’t have any idea what stage my 2 cancerous nodes were or understand the difference, I expect I will find out more when I see the oncologist but find it difficult not to try and find out more.

Thanks for your reply.

DaisyRed

Hi Daisy,

I should start off by saying that in my experience, each person’s melanoma story is unique, but as humans, we are programmed to seek out shared patterns and outcomes. This can be especially dangerous territory when we are talking about metastatic disease - in our two cases, cancer that has spread to the lymph nodes. 

What seems reasonably clear is that following your operation, -the aim of which would be to ‘cure’ your cancer, the tumours will be analysed by a pathologist and given a stage -  a rating that acts as a broad prediction of how likely it is the disease will return.This is important because the stage (and grade of severity within the stage) determines the treatment options open to you. The pathology report will also seek to determine whether your tumours contained any growth mutations that lead to different treatment options. BRAF mutation is the most common mutation in metastatic melanoma, accounting for 45% of all cases. 

Given that melanoma spread to your lymph nodes, it’s nigh on certain you will be rated Stage 3 and therefore are likely to be offered immunotherapy for a year which increases the likelihood that the cancer won’t return. As mentioned earlier, I had 4 tumours and was rated Stage 3C. With only 2 cancerous tumours, it sounds like yours will be rated lower than that! 

I’ll tell you my immunotherapy tale later if you like … 

Tim

Hi DaisyRed, when I was first diagnosed there was no adjuvant treatment ( treatment when clear to prevent things coming back ) people seemed really scared at the prospect of a return and if any one had a friend who had breast cancer where adjuvant treatment was the norm it seemed barbaric to some that melanoma patients had to watch and wait. 

It all boils down to perspective, some medics might think that having the main sets of lymph nodes removed is sufficient based on other info they have as Tim was saying the histology report, how quickly things are growing. They have to weigh up giving a years treatment to someone who might not need it to giving a years treatment to someone which will prevent a recurrence and years of treatment. The ultimate decision is usually given to you but you need to have their recommendations and reasoning. 

How would you feel if you weren’t offered adjuvant treatment; how would you feel if you were, turned it down and you progressed. Have you got questions ready for the doctors at your appointment about your options.its hard to do something you don’t want to, but it’s also hard to regret an opportunity missed. 

I have gone for the trial not to miss an opportunity but feeling sick after surgery that I wouldn’t have had but for the trial I still had thoughts of making a stupid decision, so we sometimes can’t win !! Thankfully thoughts are gone and moving forward now.

You mention you don’t know anything to help well that’s not exactly right. We all have who can’t or won’t listen, and that hopefully doesn’t happen here. You now have the experience of waiting and the feeling of uncertainty we all have and will learn about how you and others cope and if we need a bit more help in our own toolkits. 

Good luck with the next step.

Hi Tim

Thank you for your reply. So helpful. It has helped me understand a bit more. I would really appreciate hearing about your immunotherapy.

Thank you

DaisyRed