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!
My post CT results update. (sorry for repetition but wanted to keep it all on this thread)
My follow up CT was not the nicest experience, vein access is a real struggle post chemotherapy. They got me on the third attempt, very sore for needle and contrast. When they took the needle out I left a small puddle of blood on the floor. 
I got my appointment for CT results on the third time of ringing to chase and insisting it be booked whilst I was on the phone.
It happened to be the 4th Septenber. Two weeks after the CT and the same day as my colonoscopy.
I didn't see my oncologist as she is on holiday again. It was good news, all be it vague. No spread anywhere (just goes to show I was being neurotic) and marked regression. Specific questions on size, further treatment were not answered. Advised it would be a CT in 3 months time.
Colonoscopy went to plan this time. Just the one polyp was found and removed. I will see him in another week and a half, I am sure just to be told all was benign and he will leave me in peace now.
I had minor surgery Monday for my skin condition. I grabbed the opportunity whilst I could. All went well, a little extra caution around me because of diagnosis, but back to work Monday coming. Just checks on wound (which of course I had to chase, as again I was forgotten - beginning to get a real complex, that every single department manages to forget/overlook/misses telling me things/ follow ups and it does make me feel like a realy pest that I have to remind/chase/check things have been done every step of the way. But usually they haven't!).
Managed to speak to my oncologist yesterday and get answers on my questions.
Tumour has gone from 9cm x 5cm from March to 5cm x 1.5 cm since treatment. A huge successful reduction. Lymph nodes are no longer enlarged. They didn't mention anything about surgery, so I am guessing despite the lymph nodes not being enlarged, it is still off the table. Confirmed no treatment for now and it will be an Xray in three months time, not another CT as I was previously advised. It will be a CT at 6 months, Xray 9 months then CT at a year.
Such good news, I was so relieved. I had really felt like making plans/ doing anything too far in the future may be futile. The results have brought much comfort.
I got an appointment letter to see my respiratory consultant Monday coming, which surprised me as not heard from them since April. Having spoken to the oncologist this is a normal follow up due to the radiotherapy.
So once I have seen respiratory consultant and then the Colonoscopy follow up, I am hoping that I may just be left alone appointment wise for a couple of months until it is Xray time. What a lovely thought that is. Difficult to work full time, have a social life, look after my horse and run a home and attend all the appointments.
So a really positive post. That there is hope, not to panic and that treatment really can work wonders. I am completely off all pain medications too. What a difference to my original posts, saying how in agony I was, despite rattling with pain killers.
My next update should be in about three months after my Xray and results, unless anything of note happens between now and then.
As promised my 3 month update 
You all know by now how I like to ramble, so best you get comfy, get a cuppa, empty the bladder and all that.
All went well with the colonoscopy results, the polyp was benign. I get to have a little check in a year if nothing else significant is going on, otherwise they will leave it.
I am still managing with just occasional paracetamol for the pain and hot water bottles especially when I get stressed or tense.
I finally met my oncologist today, not a mythical creature after all.
I did develop very tight sore muscles in my right arm/shoulder, but this is a longer term side effect of radiotherapy and should ease over time, which it already has a little.
Symptoms wise, I can feel it when I swallow, more so when my head is at an angle. Also one I haven't mentioned here I do not think, but did tell the oncologist, is when I first get up, I get a kind of gushing sensation in my chest where the tumour is. I am fairly sure it's blood pooling over night when I am horizontal and gravity moves it when I stand up. Nothing to worry about I am sure and it's not painful, just a bit yuck feeling. She didn't seem concerned by either of these and just asked if I had any swelling in the mornings. So think she is thinking of Vena what's it syndrome (Pressure on an artery near the heart). Though she did say she wasn't sure how to write in the notes, what I said, as in how to describe it. So I am guessing it's not common or something anyone else gets?
I had my neck poked and prodded and again she didn't seem concerned, so that was reassuring, as the feeling when swallowing at times was worrying me. I think one side feels a lot firmer than the other, but she didn't make any comment on this. So I guess all is well.
Asked about headaches which is a nope from me.
I explained about my grip and dropping things and she did some grip tests and numbness tests which I do have some problems with, but nothing major. Only annoys me when I am trying to shop, optimistically, without a basket and keep flipping dropping things.
Her final check was to look at my eyes (not prompted by me) and I sore her give away a reaction then. Her;s grew a little and looked shocked and then she said, oh that's ok. She obviously hadn't seen in my notes that yes, I do have horner's syndrome and have had it noted since before official Diagnosis in February. It had massively improved and barely noticeable even by me, though it is slowly showing a little more lately again, but again no one would notice unless looking for it.
So Xray showed 'no significant growth' so no treatment for now 
She said I would have a CT and looked up that I was pencilled in for early January. We both thought it would be later February so a little confused. Might be their weird booking system so they don't forget me.
My next follow up is with the respiratory man early February which I thought should be March, as he said not till after my next CT. I just figured he hadn't counted on his fingers correctly and had planned to change it after this appointment. I will get hold of my lung nurse and clarify if it should be January or February for the CT.
My next follow up will then be with oncology in 6 months, so they will alternate me.
She said if things were to recur, then I would be treated with a combination of immunotherapy and chemotherapy. As we are not there at the moment, I did not delve in to the specifics of which and what.
I finally got to ask about markers and mutations, some were negative. PDL1 was low 3 - 5. Braf? marker was negative as I think was the ALK? EGFR? didn't have enough cells to test ,but felt it was negative. I asked if this would affect immunotherapy and she said no, they are now starting to issue immunotherapy no matter if low or negative markers.
I also asked about grade and she said they do not grade lung tumours, but the cells were poorly differentiated and if they were to grade it like a breast tumour, it would be a grade 3.
We discussed if this meant it would grow quicker if it did recur and she said yes, but they also respond better to chemotherapy so it's not such a bad thing. She also said they are less likely to spread, which was reassuring.
The next year or two are pivotal to know if it will come back, if not it is less likely to in the future.
She then stole some of my blood and let me on my way.
So overall a positive and informative visit. I feel released to enjoy Xmas with no worry about not wanting to eat due to horrid treatments and reassured about the future.
Thank you Albondigas
That did make me laugh 
You are right, they are sadistic aren't they?
Ops they will saying this blood sample smells of vodka and wine 
I will have a fair amount of time to kill, so I may drop in and see the lovely radiotherapy team whilst there i guess. I am on the 7am and not flying back till 4pm.
There was a rather good looking receptionist when I was having treatment, so i could always check to see if he is still there, take my mistletoe and all that.
Worst thing is, I had my eyebrows done for my works do and they are sprouting again. I thought ahh I am going no where, I'll leave then to new year... so now I'm waiting for a last minute wax appointment. How very inconvenient 
