Cancer Of Unknown Primary (or Not?)

Hi KT, Havent spoken for a while so hopefully you are going well and your treatment and health are improving. I've had a real roller-coaster ride recently. Everything was going really well until today. I got my second opinion from the specialist melanoma clinic in Brisbane and they basically said everything I'd already been told. The diagnosis and treatment were exactly what they would recommend, so I was pretty okay with that. My treatment has been going fine the coronavirus hasn't really affect anything for me. On my last treatment my oncologist even used the good "C" word - cure. Saying a majority of people in my situation are usually cured. Nothing concrete but something to really hold on to. Then today, for me a mental bombshell. I wanted to speak to someone who would hopefully understand my situation and my trail of thought. Reading the sports page on the BBC website I see Michael Robinson, an ex-professional footballer, died today of skin cancer aged 61. Reading further he had exactly the same symptoms as me - metastasis via a lump under his arm. My heart sunk and now I'm feeling very, very low as all I can think is that I will follow suit. He only lasted 2 years after his first diagnosis. Sorry, doom and gloom but I didnt know who else I could talk to about this.  

Hi Chris (Eintracht) firstly thank you as I take it as a compliment when you say you didn’t know who else to talk to and you came here.

I do know what you mean, I have wobbles every now and then, that I have to deal with. One sad journey doesn’t mean it’s going to be yours in fact it could be the rallying call you need to appreciate how bad things could be, and how good they are right this moment for you and to build yourself up to being positive and proactive again.

I hope you find some positivity from the blogs of Tim90 (I’ve tagged you into a post elsewhere, where he repeats it ) he’s done a few blogs that you might want to read by clicking on his name above then at the side click blogs. 

I used to read and watch a vlog from a paramedic with stage 4 melanoma back in 2015 as she had different treatments hoping to hear good news and being apprehensive as she passed away, but also read about Jimmy Carter and how miraculous his recovery from melanoma to the brain was after surgery and immunotherapy Pembrolizumab. The two extremes and the uncertainty you have to decide how it’s preferable to live with the uncertainty. I think I chose to be optimistic but mindful of the sadness, to put energy into coping with uncertainty/ anxiety and into eating healthily to give my immune system a chance. 

During these weeks of shielding I can’t go for walks out but I can ride an exercise bike. I can do more about other coping strategies like mindfulness, talking to others, (and myself) keeping busy, volunteering. I can try and park my worries until the day of scan results, write the worry down and put it away, limit the time spent on worrying. Looking occasionally at my worry list I can discover there’s nothing more to add to it and nothing has changed. I dislike cleaning I wish it was one of those chores where you could do it once and it would stay clean, why does it have to be a daily chore? Worrying is the same it’s unpleasant, but it doesn’t have to be done every day it can be thought through, written down as a one line comment and be put away, but a stage to that is recognising that blips will occur and to have a coping strategy for a reoccurrence of worry. 

I think the fact that no primary was found can be a good sign that your bodies immune system dealt with it, and that your immunotherapy is a precaution a helping hand to your immune system, so the chances that your scan will be clear is very high, isn’t that what the docs have said. Yes it’s not guaranteed, false hope is an awful thing to have, but your hope is not false its a very possible outcome. If at some time a progression is seen you have other options, you are not at a Michael Robinson moment. Have hope until the hope isn’t there anymore and then change what you hope for.

I am really not sure if I have the tone of this reply right for you, as I think I’m talking myself through a blip in confidence as I do this, so apologies for that. I will give you a little insight into that.

My last 2 scans have not been clear but have been described as quirky, My November scan went from clear to an enlarged node when discussing a full dissection a biopsy showed the enlarged node was necrotic, the cancer was there but dying. In Feb 2020 my November enlarged node was shrinking hurrah I thought next sentence but a further node is enlarged 23mm instead of 8, but no biopsy required scan shows necrosis. Now in this growth period, I missed a dose of Pembro due to Christmas and I could feel the node come up and reduce between scan and the results. So I had been a bit nervous for the Feb scan results but also a bit hopeful. Come April and with the CV19 virus I hit a positivity blip when presented a choice to either continue treatment or have a pause until July when the peak of virus threat will hopefully be less. This was three weeks ago and I’ve been struggling with feeling confident with the decision I’ve made as it’s personal to me and not something that I would necessarily agree with for others and I have struggled with being ...well me really. I’ve been a bit emotional when I’m usually a bit calm. I think I am over the hump of that now, I think I need to write my blog entry about it.

I hope some of this has helped, I used to love being a complete responder like Tim is now and I have every hope that he will stay clear like I thought I would back in 2017. I have seen myself at times as a bit of a bad example not keeping clear a bit of a knock to positivity for others. I have to remember that I had no control over my recurrence, I didn’t go against any drs advice (but at times they did give choices) . I do suffer from medical blips and confidence/positivity blips but to be honest who wouldn’t. Any actually I’m not doing to bad coping, and if others can get some positivity from knowing I can cope and have blips and come back up again, well perhaps that’s my new role in all this nonsense. 

I have now wasted the whole of your Australian day taking so long to respond, I’m so sorry. Time for a cup of tea here and then a go on my exercise bike. Catch you later I hope where you ask me any further questions or tell me what a muppet I’m being.

Hi KT,

     Firstly, no need at all to apologize for anything - isn't that why we are all here so we can talk to others in a similar situation as ourselves about our thoughts - both good and bad ? If writing it all down in a post helps you get through a blip then that's great and you don't need to feel sorry for doing that. I'm pretty sure every person who is diagnosed with cancer has worrying, pessimistic thoughts and goes through various stages of anxiety or depression. I don't believe anybody can just sail through this without a care in the World thinking everything will turn out rosy. I find comfort in the fact that this Community makes me feel not alone and there are others out there - some in a lot worse position than me - who are also battling this disease. I try to talk to my wife as often as I can but because she doesn't have this it is sometimes hard for her to understand how I'm feeling and also why I'm feeling like that - she is always positive but gets frustrated at times with me. I'm forever searching for the identical case to me which has ended in a positive outcome, hence my big wobble yesterday when I read about Michael Robinson. Tim has done fantastically well and his story should give others plenty of hope but the different people's outcomes just seems so random. There is no pattern that if you get diagnosed with cancer B, you are at Stage C and you will have treatment D this is the outcome. Sometimes knowing everybody's situation is different helps - as in the Michael Robinson case - but it also doesn't help in that if Michael Robinson had been successfully treated and cured I would feel optimistic about my own position. Having read Tim's "About Me", he was in a far worse situation than me and ha had the best result possible. However, I struggle with this use of the term Complete Responder, or NED or even remission (there are others) - and I'm certainly not blaming Tim for using it or being told it but these terms seem to be a little bit grey and not clearly defined in their meaning. Do they give us false hope ? I don't know. Maybe I'm just being too pessimistic here. I was extremely surprised that my oncologist used the word "cure" when talking to me at my last treatment. I didnt think that was a word associated with any kind of cancer as, even 15-20 years down the line, it still has the potential to return and that cloud will hangover us for the rest of our lives however long we live.

In terms of restrictions, we are so lucky here in Australia. We have had, in total, 90 deaths from Corona virus and it is not going to climb much higher. A large proportion of those have been due to care homes or cruise ships. In our area, the Wide Bay area of Queensland, at least the size of England and probably bigger, we have had just 22 cases. We are allowed out, I play golf 3 times a week and walk 4 times a week, although we do have similar social distancing measures. So we are not stuck inside like other countries. That helps a lot. 

Although you talked about the decision you had to make you didnt say what decision you did make. Did you continue treatment or take a break? Easy for me to say but I'd have probably battled on with the treatment but I'm not in your shoes. My next treatment is 2 weeks today (14th), I dont dread it, the only thing that scares me is the chat with the oncologist and what he might say. I take a different friend along each time for company and so they can see what I'm going through.

Anyway, time for me to get ready and cake myself in sun cream for my Thursday game of golf !! 

You are not being a muppet !!!! I'm the muppet for being so negative.

Take care

Chris

Hi Chris, as you say we all hit times of feeling pessimistic until we shake our selves up and can look at things from a different angle. So I’m hoping with you being able to get out and enjoy your golf that you are feeling a bit more positive now that a few days have passed. 

You are right I deliberately didn’t say what decision I made as I’ve felt that I didn’t want to at that time. I didn’t want to influence anyone’s decision and I didn’t think my decision would always be understood with out a very lengthy explanation, in fact for a few weeks I have struggled with the decision I made, but I would have struggled either way as if there is no best decision for me, either one could have been the best, or the worst. So I brought into my decision making what was the best for my husband and I as a couple, bearing in mind risk of the virus to me and to him if I continued with treatment, as well as the risk of a break in treatment for cancer growth to me. With all reasoning based on uncertainty.

 You seem to be lucky that with so few cases around you and going about things as normal, I can imagine that you have no fear of CV-19 affecting you at all. That is I’m afraid very different to here, as I live in commuter distance of London, the news is full of lack of equipment stories, and news of deaths. This site has experiences of treatment being delayed because of either pressure on the NHS or because the greater risk at that time of an expected virus peak was the virus and a great % risk of death rather than delay in cancer treatment. My instructions for an extremely vulnerable person are for at least 12 weeks that I’m only allowed out into my garden, and if possible to use a separate bedroom and bathroom to my husband and to keep 2metres away from him. Having to make a treatment decision like that is hard enough when you can cuddle each other but even more difficult when you feel you can’t.

I found that writing down a lengthy explanation for my kids, brought home to me that my decision was right for me at the time I made it as I have previously had a year long break when I was no evidence of disease. True I’m not no evidence at my last scan but the positive signs again were that that the enlarging nodes were showing necrosis so cancer still being attacked and winning. I am feeling well and since that last scan I have felt the nodes go down, so I can have an assumption that it is possible for my next scan to show clear again, a reduction, no growth or a small increase as well as that fear that a break could let it run riot. I hated the fact that in the end the decision was down to what do I fear most, a rapid death from the virus if I caught the virus while travelling or attending treatment, or months on discovering from the next scan a progression and the possibility that after going back on treatment that at some point treatment options run out. A demise from cancer is not a sure thing for me as immunotherapy has worked well in the past I fear me and my husband catching the virus more. What if I lived with a very long term illness but I caused the death of my husband is what went through my mind. Later down the line, the threat of the virus will feel less as testing kits and protective equipment is now more available and so we will feel more confident in going to hospital, in fact the government here is encouraging people to go for urgent treatments. At the time though I had to choose and I chose a delay, with the knowledge treatment could resume in July or if I feel a growth earlier to contact them for an earlier starting. I saw as a plus (no matter how slim) the possibility that having had 46plus doses of immunotherapy since April 2016 that perhaps my body might show it can cope on its own now. Being off treatment feels so much better than being on it, but I’ve had to get through the emotional anguish, and I’m wondering if it will resurface when my next dose would have been due. I am doing a virtual group mindfulness course on zoom with homework inbetween, which should help with keeping in a happier place so we shall see. 

I was thinking of your situation you are having an adjuvant treatment, if you had been here your treatment probably would have been delayed as the risk to the virus outweighed the risk of a progression during a delay. You are lucky that your treatment is continuing and you are lucky that adjuvant treatment exists as it didn’t a few years ago. You have a lot to be grateful for you’ve mentioned your love of golf and your wife, not necessarily in that order. So perhaps like me it’s the time to work on gratitude and positivity to see you through coping with each scan result and any other uncertainties. 

I hope I am finding you well and thank you, I think I’m nearly ready to find some time to renew my blog, and my lengthy reply has been a part of that process of coping with my decision being not what others might have chosen for themselves but after a lot of anguish being something that was oh heck I want to say right for me but it’s coming out as more comfortable for me.

Best wishes

Hi Chris I now realise I actually meant to reply in answer to 

“However, I struggle with this use of the term Complete Responder, or NED or even remission (there are others) - and I'm certainly not blaming Tim for using it or being told it but these terms seem to be a little bit grey and not clearly defined in their meaning”

and I got sidetracked as my thought have been on me and my big decision.

Complete responder, both Tim and I had a spread in our bodies and a complete response means that the drug we were on took away all the visible evidence of any cancer on the scans. Our scans were clear, no evidence of disease. 

For you I think I’m right in saying that surgery took away all evidence of your disease and normally with a primary things are monitored for 5 years and if no recurrence they often use the cured word as many do not have a recurrence. It’s gone and that person is more careful to avoid any factors that might play a part in it recurring, keeping safe in the sun, eating healthily, avoiding stress etc.

I have been to conferences where I have seen people who have had immunotherapy over 10 years ago and are still clear and some drs will use the cure word and others are more wary but as the drug rather than surgery removed the cancer cells I think no evidence of disease or clear is used. The word remission to my mind and many others says clear now but it could return and I think we all have little uncertainties but immunotherapy is seen as a great hope for remaining clear for those who have a complete response, and remaining stable for those who still have some sign of cancer that is not reducing by further treatment.

I find it useful to work on how I cope with the uncertainty, as I want that uncertainty to bother me as little as it can, and we all have our own ways for doing that, I hope you find your way through yours.

Hello,  I have been in a similar situation and am 2 years on from my initial diagnosis.  We are a very rare breed.  I had a large ovarian cyst removed.  Was told 5 weeks later it was a stage 4 secondary cancer, bowel cancer was the suspected primary.  Many tests, scans, sleepless nights  wine bottles and pure stress later.   I am classed as 'in remission'.  Chemotherapy was lined up as a precaution, not auctioned. NO mention to me of Immunotherapy, so I'm interested in your case.                  The biggest battle is in my head. I still struggle to make sense of this diagnosis, with little medical evidence as to any primary.                                                                                                            I hope this helps you realise you are not alone.   

Hi Catlady, I too, really struggle with this lack of primary. I've been told my body destroyed it but if this is the case a) why did it spread first and why didnt my body destroy the secondary ? Afterall, its the "same" cancer isn't it. I've had such mixed responses when I've asked the question as to whether it is good that my primary has never been found (mine is a melanoma, the pathology from my secondary lump apparently told them that). Some say "Yes" some say "No". I do wish there was some consistency here. 

In your case, I've had many colonoscopies for a separate reason to my cancer and they are thorough enough to show up any bowel cancer. So, I share your frustration and worry.

I also wanted to post to show there are plenty of us CUP diagnosed people out there.

I hope you are going well.

Take care

Chris

Hello again Chris                       I have also asked the question could my body/ immune system have dealt with the primary.  I was told it was a possibility.  I have also asked if I had such an advanced stage secondary, then there must be a very aggressive primary , to have caused it to grow.  The answer I got was that cancer does not always behave in ways that are predictable.  I have only had one enlarged lymph node, which had returned to ' within' the normal range on the 2nd scan.                               I count myself as very lucky to be alive.  Equally I dread every scan appointment,  but am thankful for the monitoring and care of the NHs.                                                                                                                                                       Regards and look after yourself.

Hi Catlady / KT,

       Its been quite a while  (7 months in fact) since I last checked in here as so much has been going on in sunny QLD. My 6 monthly scans in June/July showed a couple of lesions on my liver (not FDG avid or whatever the correct terminology is) but follow ups showed these had shrunk and were mostly unlikely to be metastasised from my (evasive primary) melanoma - still unfound. I've now completed my 12 months of immunotherapy and had my 1 year full body CT / PET scan last week. I got the results on Wednesday which was a mixed bag. From the PET scan no FDG signs of cancer anywhere in my body which was the good, no - great (lets be optimistic) news but they spotted a thickening of my rectal wall on my CT scan. Subsequently on Monday I have, and I cant wait, an enema followed by a sigmoidoscopy to check my rectum/colon walls. Their take is, if it was cancer it would have glowed so absolutely nothing to worry about. My take - pessimistic as always - is if that is the case why are you rushing me in to have this procedure? Lets hope they are right and I am wrong!!! I hope you are both well, I caught up with your updates K8 and I hope your blip is over - seems a lot has been going on but looks like light at the end of the tunnel. Please let me know you are both going well and I'm intending to visit the forums more regularly now. We have had my 89 year old mother, with dementia, lung cancer and a stoma bag, living with us for the last 6 months so it has not been a great year. Best wishes and my thoughts with you both. Chris

Hi Eintracht, good to hear your good news of no cancer after the end of your 12 months on immunotherapy. I hope your sigmoidoscopy goes well, it sounds like something you can’t look forward to except in jest, but I hope they get to the bottom of things for you (poor choice of words ! ). I hope you get the results soon to put your mind at rest.

The blip for me feels over, I think I’ve come to terms with stable being ok and not just a complete response being something to aim for. At the moment I can’t feel any lumps, Pembro restarted in June and next scan is due mid January with results in February. There seem to be 4 nodes that seem to be going up and down at the last few scans, not always the same ones, but good it’s only in my nodes. They were very careful to do an MRI on my liver when that suggested something may be sinister that wasn’t so I’m thinking EIntracht that although it can cause a bit of anxiety for you that overall it’s good that they are investigating. I hope you let us know how you get on.