Melanoma with unknown source.

Hi KT,

     Hope you're doing well. Your positivity always give me a lift. I've had a disaster. My 6 month CT scan at the end of my 2 years showed a lesion (7mm) on my right lung. A follow up CT/PET scan 2 weeks later shows it is still there and has increased 1mm to 8mm - got the radiologists report today even though the Onc couldn't see it on the images. However the PET scan does not show it as FDG Avid - I'm assuming its because it is too small for the PET scan to pick up. I cant think of another positive reason for the lesion to be non metastatic. Anyway, I've got a 3rd CT in a couple of weeks which will show if it has again increased in size. I'm assuming this makes me stage 4 and I believe my options are :- Targeted radiation, surgery to remove the lesion and 2 does 2 year immunotherapy. Pluses are - its one lesion and it is small. Looking for some hope somewhere !!! Take care and enjoy your walks

Hi Eintracht, I always try to look on the positive side though as you know the negative stuff always tries to creep in and might hang around for a bit. Here is my non medical person take from a fellow non primary.

 I believe that us patients who had no primary found have or had good immune systems that dealt with it at the time and our bodies keep doing that but at certain times need a bit of help, and looking at your profile again it’s reminded me that you have had one year of adjuvant immunotherapy after your one cancerous lymph node was removed so in a good position to stay no evidence of disease but we all know this disease is tricky and nothings a done deal but we have lots of reasons for hope as well.

I have never had a PET scan, they suggested it once and in the same sentence thought it best for me to stick to CT scans. My understanding is that PET scans can pick up small things that are taking up glucose at a rate that suggests cancer (or a slower rate that might not be cancer) but that anything under 1cm is still nothing of immediate concern as things can reduce again. I had a period of over a year where lymph nodes came up and reduced and also a needle biopsy done on a node when the result came back it was mostly dead melanoma cells. So it may be that the very slight increase in your nodule and it being under 1cm means it will resolve it’s self and no procedure is necessary. They have said my fluctuating nodes were unusual but we have the no primary in common. 

I have always had several lung nodules show up on my CT scans and they have never changed over the 6 plus years so I believe they are just assessed as scar tissue, I’ve always been a non smoker but we live in an age where we were passive smokers due to colleagues or parents, and I had childhood bronchitis and asthma. I notice you dismiss your lesion as unlikely to be anything other than mets but I wouldn’t be so sure and I was wondering if covid had crossed your path in the last few years, just a thought and perhaps all questions to ask your team. 

You've identified that you have options if the next scan shows it has grown, (which it may not). I’ve had the same options quoted to me previously, stereotactic radiotherapy, surgery or double immunotherapy. We get into a mind set of taking action as soon as possible when it’s a skin lesion/mole to stop it from spreading. With melanoma in the lymph nodes at one time already they have to judge when the best time to take action is, not to quickly to do something that wasn’t needed, but not too slowly that things get out of control and our health has deteriorated so that it’s harder to fight things. When immunotherapy works it works on many areas to erase or keep stable, but unfortunately when it doesn’t it’s not good. 

I feel well and I’m on new tablets and my next scan may show a reduction in the 7 areas that I have. For you you have had a year of immunotherapy it will have helped your Tcells to identify the melanoma and may with no extra help show at the next scan nothing to worry about. For both of us if it’s not that good we Bath have other options. 

When I or you get our scan and results due dates and feel a bit of scanxiety creeping in, we can perhaps start another thread for the waiting.

Hi KT,

     I really appreciate your response. Its always good to hear other reasoning besides my own blinkered view. I'll try to explain why I feel how I feel. I have never had asthma or any other illness affecting my lungs, I've never smoked, we've not been even close to Covid, all my scans in the previous 2 years had not shown my lung lesion. So, from June 21 to Dec 21 it appeared - the only logical explanation I can think of is metastatic, I wish I could logical explain another reason for its existence (can you think of one that is realistic?). I have heard the same regarding people with unknown source being slightly better off but I have also had 12 months immuno and obviously - due to this lung lesion - it did not work otherwise I would be NED. I've heard anything from 20%-50% of stage 4 survive 5 years - a big difference when talking about life. I'd probably take the higher end now if it was true. I try to convince myself that I'm one of the "better-off" stage 4s for want of a better phrase. One lesion, small, detected early, probably treatable but stage 4 is stage 4. You mention 7 areas, are they all lymph nodes or other areas of your body? Is your treatment a trial or standard options for someone in your position? Have you been given or asked for a prognosis? I'm actually scared to do that for what he might say!! My next scan is 17th and now the Radiologists report has come back confirming the first finding I'm wondering why I need to bother with this one except for it to show its grown in the 3 weeks I've been waiting for it when they could have started my treatment !! Oh, well, time for a walk on the beach to try and clear my head. Thanks again and take care. Chris

Eintract, please excuse me for intruding in this thread but something you said made me think.  When I started nursing in the 80's treatment was harsh for people with melanoma.  There was no chemo that worked then, definitely no immunotherapy drugs. Trials of Interferon happening on my ward showed little promise and often triggered some bad reactions.  People seemed to have the surgery and the nearest lymph nodes were removed followed by lymphoedema of the nearest limb to the node removal. Then it was only" wait and see" so whatever time people had left was marred by painful, uncomfortable and often disabling lymphoedema.

That was the extent of treatment. Sadly I'm now here experiencing that which I once nursed but...these new immunotherapy drugs have been a major breakthrough since I cared for people with melanoma. These meds seem to give hope, shrink tumours that appear, eradicate tumours even brain metastases!  So it was your comment about your prognosis that made me want to reply with some positivity.  I feel that in 20-30 years time the statistics we are making today will show that this disease is going to become easier to treat and therefore I want to say even if the lung lesion changes your staging please don't feel this is the end for you.  Research has increased so much into this disease and now we've found how powerful immunotherapy can be we've a huge avenue to explore.

Keep the faith hon, keep nuking the little buggers ('scuse the swearing) keep well and keep hope with you xx

Hi AL,

      I really appreciate your message and no need to apologize at all. I have had 12 months of immunotherapy previously and so was 2 years NED until this last setback in my CT scan. It was a shock to say the least. I know I still have options, plenty of them, and need to try and be positive - there are people a lot worse off than me who have been cured; I've got to try and convince myself I am one of them. My Onc has told me "it is not a death sentence" and I cling to that. He also told me he has successfully treated people with up to 50 lesions, again I've got to try and convince myself I will be one of them with my 1 lesion !! I'm naturally a pessimist and tend to see the negative side of things and that is where my major battle with my situation is. People like yourself, and KT, who are positive (but not unrealistic) are a great help as are finding and talking to people who have come through this and appeared out the other side. Never thought immigrating to Australia would have this outcome !! Thanks again. Chris  

Hi EIntracht, well I thought you asked me to be on the positive side possibly as you are feeling very negative at the moment. That’s how I felt for a several days after my surgery in October doubting how things were going, choices made, the uncertainty of what lies ahead. I got out of that mood and don’t want to go back there yet so I’ve decided not to. My sister died last January very suddenly and I’ve felt quite envious of her quick passing not knowing when she woke up that morning that it would be her last day. I was given a less than 12 months prognosis in August 2015 before further treatments became available and spent some time then mourning me and don’t want to revisit that when there are still options that work for some people and therefore why not me. My team are talking about the possibility of becoming NED again and so that’s what I’m still focusing on.

There is a link in my profile to the trial I am on, the surgery I had was to harvest my most accessible tumour, if I hadn’t opted for the trial I would have changed treatment sooner to Ipilumamab with Pembro or Nivolumab, or started on targeted therapy tablets. I decided to trust the oncologist in charge of the trial that it was giving me a further option for treatment which as it’s personalised to my tumour is a good option but no guarantee of success of course. The Tcells they are growing from my own blood take 3 months to be of sufficient numbers and meanwhile other treatment needed to be started  and if it’s working for me when the Tcells are ready they can be frozen til they are needed. The targeted therapy tablets were not available to me on the NHS, because of a non sensible clause that I fall foul of but is available to others. As I had had single targeted drugs previously the NHS would only supply single again (for BRAF) not the more effective double drugs targeting BRAF and MEK. I’ve got the BRAF and MEK drugs free from the pharmaceutical company that makes them by the hospital contacting them and mentioning that I had previously volunteered for a trial so I have them on compassionate grounds. My 7 areas are all lymph nodes or node clusters in 7 different parts of the pelvic and abdominal region.

Anyway back to you, possible lung met may be confirmed as a lung met I’m no medic so can’t answer your what else could it be and I don’t think your in mood for any other answer.  You mention that immunotherapy hasn’t worked or you’d be NED however I believe it has probably worked to some extent otherwise your spread would have probably been faster and more widespread than just one nodule, based on what oncologists have previously said to me but of course there is no proof that   this positive outlook is true. The delay in starting treatment is probably (and I’m guessing)because it’s too small for the protocol they have, with me my nodes had a habit of resolving themselves by the next scan but unfortunately popping up elsewhere, 10mm was usually the magic number but they have monitored smaller increases to be careful. If they started you too early on unnecessary treatment that would not be in your interest, as you haven’t mentioned any symptoms. It’s awful waiting for things to start though and I feel for you. I had a wait after my surgery first for surgical recovery and then for my tablets to arrive it was awful but out of my control. It’s much nicer having a wait thinking of the prospect of becoming NED again but so easy to be dragged down by the uncertainty.

While there are still treatment options there is still the prospect of becoming clear, and once clear if it should return there may be some other treatment available. 

Hi KT,

     You're up late - cant see you up to watch the cricket - that would be even more depressing. If anybody deserves to become NED its you. You have shown an admirable strength of character to go through what you have and are going through and to have a positive outlook on life - I both envy and admire you. You're right in both that the waiting is the worst part and also that I have options. The next 15 days will be a test for me until I see the Onc and get my results from the CT on the 17th. "Its not a death sentence" - repeat after me Chris "Its not a death sentence".  :)  I amaze myself when I listen to myself talking to others about their similar situation, when I'm being both pragmatic and cautiously optimistic - pity I cant apply that to my own situation. Take care and thank you. Chris

Chris it's not a death sentence mate.  I get it, really I do.  I'm a natural pessimist really and I feel I'm ready for any bad news (am waiting on first scan results since starting Pembro) but if it comes my way, and it will I believe, I think I'll feel as you do.  The proof is in the pudding as they say and until your 15 days have gone by and the horse's mouth ,as it were, speaks with a treatment plan you're just not going to take much in hon.  

Fill these next days with as much as you can Chris so as to leave as little time as possible for your brain to think too much about your lung lesion. There's nothing you can change right now sadly mate .  Keep on talking to us though xx

Yeah I know - one lesion does not a corpse make !!! And every persons case is different and even if my lesion turns out to be cancerous I'm at the least severe end of Stage 4 - and there are treatments available, and people have been cured from worse situations than mine. The waiting is excruciating though and I think once I have a clear diagnosis and have started treatment I may feel a little better. 14 more days of this - not easy, not easy at all!! Dr.Google and its survival rates statistics are NOT my friend.

We often say on here that the waiting is the worst bit don't we!

It must just be horrific for you hon, I have an idea how hard the waiting is.   I'm the same as you, once I have the info I can process it and slot the change into my life but until then...aarrgghh.

I like your sense of humour, my black humour has got me through a lot so far but not everyone appreciates it.  As for mr google and his statistics we are our own worst enemies.  I often read up on research being done rather than just statistics. Don't want to be one of them, I'm unique and this bloody melanoma isn't going to get me into those statistics. 

I'm a bit of a plodder to be honest, day to day, not looking too far ahead.  Plenty of time to be real if and when...hugs x