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!
Hi Gina, pleased everything went well and hope for a speedy release and you can get home.
Mick.
Good afternoon Gina, So glad to hear that all has gone well. We're all thinking of you.
Ina Vest x
Hi Gina,
So glad it all went well and you will soon be on the ward. It's onwards and upwards from this point on.
Wishing you all the best
Albondigas x
Well done Gina , Hope you are now settlled in the ward, wishing you a speedy recovery I expect we with hear from you tomorrow. Get plenty of rest. Love Ellen.
Well done you! Hope you're doing well and have made it into the regular ward.
Diana x
Thank you all your well wishes.
I have had a bad couple of days from all the pain. Mostly from my very swallon neck rather than the lobectomy.
I came round looking like a pin cushion. I had needles in places I didn't even occur to me I'd have veins. Including foot and groin along with a lot of war wounds from failed attempts. The woman in ICU said she'd never seen someone's foot canulated before!
I managed to dislodge something in my chest drain in the early hours after surgery. Which led to a lot.of worried doctors about my bed and an emergency Xray ordered. They'd never that before either. It was ok thankfully.
Next day my morphine drip began to tissue. I was transferred to normal ward about 5pm Wednesday and the drip had to be taken away. For some reason something went wrong with my transfer over drugs so I couldn't be given anything for pain relief.
I asked for the loo, no one came back after 20 minutes and by now busting as not used to having to factor in about half an hour before really needing to go I blubbed and begged for the loo. Turns out the person I'd asked had gone off shift. Nice.
The next morning I had my local anaesthetic line still in, which was attached to a non portable box in the corner. I get asked have you gone to the toilet. Ermm no I can't move a.d when they tried to keep.me.up yesterday my head span and my blood.pressure dropped to 50. Starting to seriously loose my patience now.
So I'm getting offered codine which I have pre warned them I cannot take as gives me really bad stomach ache. And oramorph.
In my attmepts to get mobile somehow I've broken my local anaesthetic line... So that gets removed. So now it's lowely paracetamol and I take the oramorph. Within hours.im fighting for the bathroom with another patient that keeps hogging.it for at least half an hour to an hour a time several times a day so I'm desperately hobbling to the nearest working corridor bathroom.
I told them that the oramoph seems to be upsetting my stomach they want a sample fine, humiliate me further. I dutifully do and suspect no one has looked at it as next drug dispenser looks at me like I've grown a second head and it's noted I'm refusing that and codine. No I can't take either, believe me I'd love to be able to take all the pain meds on offer.
Today regiatrar came to see me I said again I was still having stomach troubles but was now on only paracetamol which i was having to chase for and getting usually 3 doses which were too far apart.
I get moved to a side room, ahh peace and my own en suits, stomach problems thankfully have stopped. Funny that they start after oramorph and codine and stop within 24 hours of stopping them. They were going to bring me more sample pots. I grumpily pointed put we did this yesterday to which i got we want more.. funnily enough those pots never turned up either.
My thoracic nurse specialists came to visit and I complained again about the lack of pain relief and finally I suggested even some ibrupofen she had a word and I have thay to go with my paracetamol woop going all out for the person that had a rib and a third of a lung removed 72 hours ago. Now I'm wide awake and can't sleep.
They were talking about sending me home Saturday but think my stomach may have delayed that so may be Sunday. If anyone is about to arrange travel back to Jersey at a weekend.... booohooo there has been lots of tears the last few days. The op and 24 hours after with drain removal i thought I was on the home straight thinking what a doddle it had been after all my initial worries. The first bits were the easiest!
I’m glad the op is over for you and you have gotten through the worst of your pains it can now only get better for you.My surgery is cancelled and I begin chemo radio therapy next week I’m now a stage for as I have spread in chest not still scared as doctors saying still curable but anyway I’m still here in Lake District for well before I start my first week in hospital keep well and hope your back home soonxx
Bloody Nora!
You have a go at me for messing things up when you are not around, at least I dont lose bits of my body and medical equipment!!!
Don't know how you retain a sense of humour Gina Id have committed mass murder by now.
Sounds like Southampton is a hospital to avoid.
Keep your chin up, keep going and above all else - keep passing water but only in a loo.
Phil xx
Hi Gina
It sounds like the General hasn’t improved any since my 2 week stay there 4 years ago! The hospital is hugely understaffed and most nurses are agency staff. They keep spending money on expanding and improving the hospital, but don’t have the staff to go with it.
Sad to read you are having a tough time, especially with the pain. Good to see you now have your own room and bathroom, that makes such a difference. Ridiculous that you would have to struggle all the way to the corridor bathroom without any help, glad at least that is now rectified.
I do hope you are up to the journey home soon, as Dorothy with her red shiny shoes would say “there’s no place like home” and you”ll feel so much better at home I’m sure.
If you need anything at all, I’m a stone throw away, even if that’s a shoulder to cry on, I have very big shoulders.
Xx
Hi Gina , you certainly have been through the mill. Not being able to have codine didn't help,for me I was able to have all the pain killers when I had my lobectomy and had no pain at all . Southampton hospital doesn't sound great, unlike Bristol which I couldn't praise enough . Hopefully you will soon be back home and in your own bed. Ellen x
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