Hi All
I am new here and hoping for some more information, also whilst awaiting diagnoses I have been doing a lot of googling, and found so little on my type. Especially in my age group. Most posts about mine seem to be on behalf of older relatives. Apparently it's rare, and rare as hens teeth in my age group. (34 year old female). So by sharing my story here I hope to raise awareness and should anybody find themselves where I am now, they can google for some information.
I just got diagnosed yesterday (Maundy Thursday).
I also want to raise awareness to get checked, if it's not normal for you, please do not dismiss it as I did and leave it and just think it's part of getting older.
I should start by saying I am slightly more complicated as I also have an autoimmune disorder called hidradenitis suppurativa (HS I call it as spelling and saying it is a mission). This is pretty harmless, extremely painful and embarrassing condition that causes abscesses in sweat gland areas. It is not relevant to my story so do not get hung up on it, other than it helped my cancer hide behind it as I blamed this for some of the symptoms.
I noticed some stinging type sensations under my arm initially, this is not abnormal for me as I also get frequent cellulitis infections as part of my HS. It is my left axilla that is predominantly affected with the right rarely coming to the party. The stinging was on the right so I could not understand why I had no abscess, no bright red skin, no thickening. I dismissed it, it came and went intermittently I kept an eye but it never came to anything.
Around August 2017 I then noticed sleeping at night was uncomfortable to lie on my right side. This went on for a while at least a month or two and wasn't improving. I had gone numb where I was getting the stinging under my arm. Again I did not think too much of this as I had had numerous surgeries to drain abscesses and had noticed nerve damage/loss of sensation in the badly affected left so assumed it was that.
I had also been getting a lot of headaches, which I had mentioned to the doctor previously, they ran bloods and said I was low normal so put me on iron to boost me a little. This did stop the headaches.
Another thing I had noticed and was rather annoyed about is embarrassingly I did not link it and despite them saying always get checked and I didn't. My right breast had changed shape slightly. I felt like I looked a bit sagged, not being by any means are large chested woman I was most put out, but just thought ah that is what they mean about your 30s.
My other weird quirky symptom which again I didn't link is I suddenly started suffering from indigestion/belching which I had never ever had problems with in my life. I just got some indigestion remedies to try and help.
The most scary symptom for me in these couple of months was on and off 3 times the whole right side of my face went numb for a few minutes at a time. It felt just like I had had a dental local anaesthetic. Half my tongue felt thick and floppy my nose was numb down one side and my cheek. At this point I started to google and freaked myself out as it kept saying potentially MS for my symptoms. (just the numbness I didn't think to link the rest at this point). I had also noticed the numbness across my chest and at times down my arm in to my little finger and ring finger.
October 2017 I finally I went to my doctor about another one of my friendly abscesses and brought up the pain in my right chest/numbness across my chest and back of my arm and numbness of face. He suggested a trapped nerve. I was referred for an xray.
I had this the report said I had a very slight narrowing between two neck vertebra and a bone spur. Accepting this must be the cause I went to a chiro to resolve. My insurance would fund 4 sessions which I had and only felt mild benefits.
I went back to the GP and asked what to do for the best, there had been mention of an MRI but as the Chiro had mildly helped I went for physio which was unlimited on my insurance.
I had seven sessions in total, in the middle I had 3 sessions of acupuncture in one week and that really made me feel better I was getting more and more pain by now and so fed up as I had gone in October and it was now January/February. I thought finally I would be fixed, then we slowed back down to once a week and the pain was intolerable again.
The physio agreed he had done all he could and referred me back to my GP and pain specialist who would organise an MRI and maybe an injection to the nerve if needed.
I sore the pain man who was lovely, organised an MRI of my neck suspecting a protruding disc. February 2018 I went for my MRI so relieved I would finally be getting fixed. He said that a couple of my symptoms didn't fit that diagnosis but some people are wired differently, He also said that after six months a protruding disc should have healed itself by now, or very near to it.
It was a Wednesday and I was to meet with him the following Monday to discuss. Within half an hour of getting out of the MRI I had a text to ask me to go that evening to see him and bring someone with me. It was at that point my world came crashing down. I knew I was in for bad news and something serious had been found. I was very tearful at first but then went into a seriously calm slightly surreal state about it.
I went to see him as requested and he was gutted I could tell to tell me that the MRI of my neck had actually picked up a mass on the Apex of my lung. I now know that this is a Pancoast Tumor and that it ties exactly with my symptoms.
Also in hindsight looking at my MRI and comparing it to my Xray, it was there all along on my Xray and it was missed! It should have been found 4 months earlier. I am angry about that at times, but also realise being angry won't change it. It was missed and a four month earlier diagnosis could have made all the difference. I had read tumours double in size in four months. But it wasn't and it can't be changed.
He advised I would need to go for several more MRIs of my brachial plexus, thorasic inlut, my spine, chest and head ( I had also been getting a lot of headaches so they were now being ultra precautious). with contrast and a thorasic CT with contrast.
These showed the mass as suspicious and of about 9cm with enlarged lymph nodes.
I was then referred for lung function tests, blood tests a lung biopsy and a PET scan which I had to travel to the UK for was we have limited facilities in my small island.
The biopsy confirmed it was positive for cancer, I have Adenocarcinoma the most common type. The PET scan showed some other 'hot' areas areas for concern. So I need to have more tests, though the enlarged lymph nodes in other areas I think will all be due to my HS as the areas are both Axillas, my groin (which I have had an ultrasound on and need to have a biopsy on to be sure) and my bowels, which seem fine but need a polyp removed, so likely what the scan was finding.
Providing none of these other areas are affected I am a stage III B and they believe at least an N2 as the node in right side looks malignant, so does the node of my Trachea and they are questioning the left side node which would make it an N3.
If it's spread elsewhere I will be a stage 4. Here is a post to how the TNM stages are spilt over the different stages and how they categorise them. cancer relief lung cancer stages
They believe due to the multi layer node involvement it is inoperable, which I am a little relieved about as it's major lung removing surgery and potentially ribs too.
I will have to go back to England to see the Oncology specialist there hopefully within a week or two, by which all my other areas results will hopefully be in. But all being well it looks like I will receive Chemoradiation. I have been told it will be the highest dose they give. Which is where my questions come in please, how long for, how often? We do not have radiation facilities where I am from so again this would have to be done in the UK. I need to plan around this life/animals/work etc and do not relish being in a place for too long where non of my home comforts or friends/family are.
Sorry it was long, I wanted it to be as informative as possible for anybody else going through a pancoast diagnosis.
But please the main point of my post was, laying all those symptoms together it's obvious, but them appearing separately over several months and being such a rare lung cancer (only 5% of all) and usually affecting men in their 60/70s I am the hen's teeth diagnosis that you see people dismissing all over the internet when people google and panic that they have shoulder pain. Get checked, if it's not normal for you, just check it out!
Hello
Scrappy and crappy tops will be packed Julie 
along with shorts. Best I shave the legs again on Monday 
Thank you Poppy, Marimba, Chelle, Gbear and Ray
I'll send you a PM Gbear lovely
Don't worry about it Nel
So I have almost got things sorted now after a long days of chasing and banging my head against several different walls. Plan is:
Fly Monday lunch, they have moved my MRI to later as I had to explain numerous times that I couldn't be in the scanner at the time they booked as I would still be in the sky 
and no I couldn't fly Sunday and Thursday as there are no flights. After several screen shots and explanations later they FINALLY caught on.
I get the joy of a stay on the ward in NHS hotel Monday evening... if you remember from my lung surgery how much I truly detested it last time.
I then get ANOTHER CT Tuesday and yet another Hannibal Lecter face shield. I then get kicked out on the street, unable to fly home until Wednesday. So, I will book a room at the Southampton Premier Inn by the airport. Saves faffing with yet another taxi. So it seems I will miss out on the town centre this time.
Chelle, I did ask about the apartments at Ocean Village, because they are sending me privately this time, they are not available to me (but I can get insurance to pay for a stay in a guest house or lodge). They suggested Jury's Inn which is in the heart of town, but it would mean another further taxi, so I have opted for Premier Inn, it's cheaper and easier though they have said they won't supply any food 
I will go to the hospital M&S or similar and get something to eat that night and the following morning. I will have to remember to put it in my bag as I like All day breakfast sandwiches... and if I don't get my nice driver I like, the rest of them are Muslim and it didn't even occur to me that me having smokey bacon crisps in their cars would offend them, until I was happily eating in their car. I could feel them glaring at me...... I thought at first it was because they were worried about crumbs etc.... then it finally dawned on me the faux pas I had made! 
So I will come home in between, I dillemmared but as they can't confirm until after I have had the scans the date and times and how many sessions of stereotactic radiotherapy, I figured it is better to come home as I would pretty much be confined to staying inside alone for days (which I pretty much am at home - but at least I am free to stand on my own door step for some fresh air).
So Monday off I go and I will get Covid tested on return to airport on Wednesday.
Maybe primark sneaky visit next time or if I stop in town on my way to Premier Inn
There you are,
Was starting to think you’d run off with Ben the nice taxi driver
Well that was a nice straight forward trip, apart from the hiccup on Wednesday.
Glad you’re home, relax and enjoy the weekend 
Hello All
As promised here is today's update after my scans. I am only letting you guys know and close family and close friends and ask anyone who has contact with me on social media to keep this quiet for now as I haven't let many know yet and will select an option first before I say anything and get it approved by my insurers first.
CT I had on Friday last week. I lost sensation from my left elbow on the outside down to the fingers so was worried along with minor headaches, nausea and decrease in appetite so I knew all the warning signs were there.
I chased the CT Chest to pelvis and reported the nerve pain to them as it has come on suddenly and quite sore at times. My CT was all good with no changes.
I had the MRI Monday, so as my bloods were all good and CT was fine I knew it must be something in my brain.... anxious wait for the results to get called today and summoned to the head teachers office.... I am in tomorrow for immunotherapy, so I knew they must love my company huh?
So I am not recurring in the brain.... it's a shiny new suspicious new area of the brain in a brand new place. Oh the joys huh?
This time it's in the cerebellum part of the brain (back of head)... the pictures will be sent to London and Southampton for review to see what treatment they both suggest and then I can pick one. They may say anything from further surgery (yuk), further full brain radiotherapy (just as my hair is coming back and almost able to style it) as I only used 5 of the potential 10 last time, or further stereotactic radiotherapy or to rescan in a month or so.
Last time my brain mets were unusual to look at (as they contained a lot of cyst and quit a bit of edema around them). This doesn't look the same! Making sure the poor locum is earning his keep eh 
Hopefully I will get the options soon and select one.
So maybe wait, maybe London, maybe Southampton I also think I will factor in travel into it, as London involves a lot of public transport to get to UCLH Neurology Neurosurgery hospital (it's next to Great Ormand street) rather than almost direct flights and a 20 minute taxi drive to the hospital.
Here we go again,
congratulations with the CT results, I’m so pleased for you, just wish your bloody head would behave!
well I think we all knew what was coming earlier on when you said you’d had a phone call. I’m probably well off course but maybe it’s better that it’s in a different place? (As if that really helps) There’s that lovely word again - options - you will sort this out for yourself as usual, at least this time there’s no surprises coming you’ve already done them all, you know what they’re all about. I hope you hear ASAP so this can be sorted out, I’m sure you will and I’m sure you’re already thinking things through and will have a good idea which way you are going to go when they get in touch. I know you say you’ve got nausier but try & keep on top of things so that you’re ready to go. Let us know as soon as you know what’s happening.
Take care
I am a needy pain in the arse aren't I?
How dare my oncologist go off for at least three months and my respiratory man has also left the Island too. So has my hospice physio.... I keep scarring all the staff away when I go there 
Apparently my scans have been sent by blue light to the English hospitals...
It is small and you are right it is better that it's in a different place as it means more options I can potentially be offered.
I have semi made my mind up dependant on their review and if I choose one will that rule something else out further down the line or not.
They are keeping me on the immunotherapy for now as it's working well except my stupid brain.
Oh and of course I am changing GP as my present one has an extremely rude receptionist. I tried to get a flu jab booked in and she said the system didn't say I was high risk so I couldn't have it... she was so rude and told me she didn't have time to look at my notes when I was trying to tell her that I tick 2 of the high risk options so I definitely am indeed high risk. There has been a few troubling things lately but I kept my cool but yesterday was the straw that broke the camals back with them. On the plus side the new GP is right next to our local hospital and very close to my work, so makes life easier all round.
