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 All
I thought I would do an update now, rather than wait for my next scan.... nothing has changed with my cancer and all seems well... so that's all good, but I wanted to post stuff about what's happening in general around the world and cancer diagnosis and what is going on. So feel free to skip this, unless for maybe the one or so of you that likes my waffle.... 
So last time I posted I had good news about my head scan and I also mentioned Jersey was going into a semi lockdown as we had Covid over here now. Not sure I mentioned that the hospice was shut to out patients a couple of days after our first confirmed case over here. So no access to the hospice since 13 March. Sucks to be honest, I was trying to get up and out to endeavour to get back to work, only to be told to shield at home.... as I was pretty much laid up for a year before this I was so desperate to get back out...
I went for a check up chest X-ray after the MRI of head. That seems to also be fine and stable. I had a telephone consultation yesterday with my respiratory man. He said he would leave it my oncologist to organise my next CT which he believes will be early July as was last scanned beginning of January.
I also raised concerns with oncology as my neck was sore and I thought my vein was a little broadened . She poked and prodded and said she wasn't worried... must have been getting my knickers in a knot over nothing.... likely because only my head was scanned this time.
I have had 6 cycles of immunotherapy so far, 7th one next week. Unbeknown to me, they started me on a dose in accordance with my weight, rather than giving me the standard dose they give to all of I believe 200ml. So I was getting about 120-130ml instead. This was a dip a toe in the water to see how I reacted to the immunotherapy. I think this was sensible as my body really did not like chemotherapy.
After 4 cycles of the weight dose, they have put me to the flat dose for the last two. So I should ask if they will keep me on 3 weekly cycles maybe for a couple more then maybe after that (or after my next CT) will they double dose me to 400ml and give it to me 6 weekly.
To be fair, going from 3 weekly to 6 weekly, doesn't make much difference to me. It just means instead of having to attend the hospital 4 times over 6 weeks, I would have to go in 3 times over 6 weeks (as they still test your blood every 3 weeks regardless. I also walk to the hospital, so not much difference for me.
The hospital is still shut except for pre planned appointments or things that cannot be done over the phone. I find phone consultations hard for me. I very much rely on reading people and seeing between the lines through their body language etc, rather than just hearing something on the phone... much more than I realised I did.
With Jersey they are already lifting lockdown, the started a few days ago.... unfortunately I am quite furious about it.
They are going what they call phase 4, phase 3, phase 2 then phase 1.
Phase 4 - Means you can leave your house for 4 hours a day, and can meet two people that you do not live with outside keeping 2 meters apart. This was done 2nd May.
Phase 3 - Means 6 hours a day and meet 5 people a day you do not live with outside. Some large retail outlets can reopen and restaurants with outside seating that can socially distance can re open. This was done 11th May.
So we seem to be rushing through them without waiting to see what happens. Our Nightingale hospital officially opened Monday 11th May.
I thought being an Island they would be aiming to eradicate it on the Island by quarantining everyone as whilst a small populated Island we had cases and we did shut down (in my eyes too late) that if everybody obeyed they could contain it and stop the spread. It did seem to be working and they were getting on top of it and it was almost fizzling out....
Before lifting the lockdown (with minimal testing and only testing travelled people with symptoms). We had 2,532 negative 286 positive and sadly 24 deaths here. 197 recovered. So only about 65 tested positive active cases. Some were in hospital I would imagine some may be in care homes, so very few just self isolating at home and all but non essential travel off island, could return to completely normal for all if stuck to it for a couple of more weeks or so.
Now I believe the daily figures will show the figures rise again and get their 'peek', rather than hoping we had already had our peek and we were stamping on the ashes to ensure it goes.
So now, they have decided they want heard immunity again (if that is even effective or works) and keep banging on about the economy and mental health. People twitching after not even 5 weeks of lockdown. In my eyes they gave in to peer pressure and have already lifted to phase 4 and now phase 3 already a few days later, rather than waiting to see what the first lift did. So disheartening.
They also spoke about antibody testing too, they did a few tests over the weekend a week and a half ago. They were supposed to then role them out a lot more (as I was hoping to get one) but now they have also put the brakes on that too.
I was hoping to get a test as after I believe my 3rd cycle of immunotherapy (so mid March) I lost my sense of taste and smell. I thought that was a weird side effect of the immunotherapy and even more odd that I hadn't had that on either of the first two. It cleared after a few days... and not had it since.... then later on they said it can be a sign of Covid. So now I wonder if I have already had a very mild exposure to it already and was hoping to get tested to see.
They finally clarified those they consider severely vulnerable, lung cancer and immunotherapy came on their list. For those that are severely vulnerable are simply told to remain shielding (with no end in site for us)…. so not a damn is being given for us, or for our mental health by the government....
If herd immunity does work great.... but some severely vulnerable may not have a long enough life expectancy to see any benefit of herd immunity or a vaccine materialising. Sorry strong words there, but I felt I had to be honest with how this was making me feel and how once again we are pushed aside and forgotten about. I would love to enjoy what will very likely be my last spring/summer, rather being told to shut myself inside, with no garden, alone, not allowed friends/family to see and only leave for treatment. No one wants to live their twilight time under those conditions do they?
On another note, I wasn't sure whether to post this as it was a bit negative. Usually I do like to be cheerful, but to give my full story I thought sometimes you also need to share the not so nice reactions of some people about.
As you all know I wear a wig as still waiting for my hair to come back (still patchy and thin in the parting … which I am still hoping will come back but getting less hopeful as time goes on). I live in a very built up area surrounded by flats. I went out to the glass bin (for a Jar.... not booze bottles all) on Saturday.
A group of teenagers/early 20 year old boys were having a party on a very small balcony.... (suspect it's a 1 bedroom at best) and as there was several people there, they had been breaking the guidelines of people entering your home that do not live with you. It had been going on since early morning and I was getting fed up as it was early afternoon by then and no sign of it letting up.
I didn't say a word but they sore me walking down the street to start shouting at me to get my wig off and jeering at me to get all their friends to look at me. So belittling. I just carried on and ignored them. I am sure you can imagine how upsetting that would be though, especially as I am already paranoid by it. I am ok now and just think ahh bless, they must want to belittle women in front of their mates and girlfriends to compensate themselves from having such small dicks!
On the bright side, neighbours called the police twice on their gathering for breaking the guidelines and I hear that the landlord is evicting them. I guess that is Kismet after all
Hoping to post again once I have had my next scan with good news.
Now I should finally finish up the cleaning, but so late now, I will have to drag Henry the hoover out tomorrow, I am blaming you for that Ray 
(I finished the washing and put it away, cleaned the surfaces in the kitchen and bathroom) so hoover tomorrow (and ideally mop - but doubtful that will happen one day....) if you want something done, ask a busy person.. and all that... I am not busy 
ETA: Forgot after all that waffle to put the pick up of my post X-ray picture up with my 'protection'
Hi Gina,
Feels like a long time since I had to put the kettle on
Just a short paragraph to update us on your scans etc., that’s such good news. Though I must let you know I have got no nails left since you told Ray you would do an update on your thread!!
I like waffle (I know, you can’t believe it) so I carried on reading, I think we all have the same frustrations and anger about the way things are at the moment and I don’t think we can say we are any better or worse off than you over there, we’re all in the same mess.
I usually read your post and reply straight away but it has taken me a while to try to write something civil. I can only commend you for your dignity with those lads, something I would not have had, as you say karma has come to them and I’ll leave it at that, you don’t want to hear what I truly think.
Im glad things are going well for you at the moment, it’s a bit late now but I might celebrate with a small glass tomorrow
I do love a good waffle. Like Julie I was waiting in anticipation for you to post last night, but sorry to say I fell asleep 
I can truly understand your frustration of losing your summer. I feel very sad that your hospice is closed to you, that was a huge support to you going there, and that is a big blow.
As for the “boys’ having the party......I can’t put into words on here what I want to say. Like you say Karma is coming their way. Nasty, immature, spiteful individuals, who will amount to nothing in life. Their parents must be so proud!
The best news is all scans and X-rays are looking good. Long may that continue my lovely. I will send lots of social distancing hugs to you x
