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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 younger 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 though 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 and 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 Thursday and I was to meet with him the following Monday to discuss. Within half an hour of getting our 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 MRI of my brachial plexus, brachial 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 poly 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.
The 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 received Chemoradiation. I have been told it will be the highest does 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 no 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 its 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 hens 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!
I know this will be read by many but some will just read and not reply. I just wanted to send you a hug xxx
Adding a hug to Teresa's one x
I would like to add a hug too xxx
Thank you for the hugs and I hope you are doing well.
Just to keep this up to date, though I will try and keep it brief.
My groin biopsy came back clear, as I was quite confident it would. My colonscopy fell through at the last second as the Moviprep made me throw it all back up. I am assured it will not delay anything however as they are confident the polyp found is benign. I will have to redo that at some point.
I finally get to see the Oncologist in Southampton tomorrow who will tell me the real deal and what can be done. The consultant over here is a respiratory man so not an Oncology expert. I was told it would be chemoradio with a curative intent. Though I finally was contacted by the lung nurse this week, who just mentioned raditotherapy and that she thought it would probably be radical rather than palliative... this worries me.
The symptoms I feel have progressed a lot since they found the mass in February. I have gone from managing with paracetamol 2 - 3 times a day to having to take paracetamol as often as I can and curpofen and pregablin. I cannot sleep the night through without waking in pain when they wear off and having to take more and usually moving to the sofa as the back supports my shoulder.
My Horners syndrome is also now permanent rather than intermittent.
I am worried about tomorrow and just how long it is taking to get to the treatment stage, especially with how I feel it has all gotten worse in the last weeks. I am told it will be a chat tomorrow (what a waste of time to fly me all the way there) the following week likely will be lign up and hopefully the week after treatment will start. The only lure is it may provide pan relief as a large part of me wants to run and not know and not bother with treatment that has taken so so long to be offered (factoring in the misdiagnosis in November and that I was told the tumor was already 9cm and that could change again tomorrow).
Just wanted to wish all the best for tomorrow’s appointment and do hope you can get a plan of action of what your treatment is going to be whether Chemo, radio or both
The waiting is always the hardest part
When I was first diagnosed I was under the respiratory doctor who devised a plan for me then when referred to the oncologist he had a different plan in mind but once you know you find you can move on then and get treatment started
Keep us updated on how you go
Thank you kindly BorderC, it is good to hear that plans may change, and it doesn't necessarily mean anything sinister. I will definitely let you know what their wonderful plan is. I am hoping for the shortest amount of time off Island as possible. Though I guess living in England for a while will be a new experience/adventure thrown in with the bargain for free :)
I hope this finds you well. I just joined this site due to the Mets in my lungs I decided to look in and try to learn more about treatments etc, and who do I find only yourself!
Dear Gina having just read your complete history what a very long and frustrating time you have had and thank you so much for sharing that as it is true we are all guilty of overlooking symptoms and you like me have other health issues so these often muddy the waters.
The lungs are funny when it comes to diagnosing as 4 years ago a Dr had my chest x rayed when I had 2 chest infections and she then called me in asked me had I, anyone, to talk to as I had lung cancer advanced and the outlook was not good! I was stagged and shocked at cancer when I only had a mild cough and 2 that the news would be delivered in such a fashion without further tests anyhow I was referred to a prosperity Dr and they did more tests and then I seen by the Consultant who looked at me and asked me did I know why I was there I replied I have lung cancer to which she replied there is absolutely nothing wrong with your lungs they are both clear! I honestly did not know whether to laugh or cry so I asked about a tumor and she told me there is no tumor and what the dr saw was a darkness caused by the lack of breast tissue since your breast cancer, I asked about the coughs and was told you have acid reflux
So I know what it is like to when they get it wrong and right, I do hope you get yourself sorted Gina and I was delighted to read the groin was clear, I am starting my radiotherapy shortly I have to go to get the planning done on Tuesday and hopefully start next week I am not looking forward to it but the sooner it is over the better,
Have you anyone to stay with on the mainland? or even contacts to meet Gina? Please keep in touch and let us all know how things are going I am so sorry I cannot help you with advice on treatments but I haven't even started on anything for my lungs hopefully there are other members on this site who can fill you in
Love Bluebell xx
So lovely to hear from you, I am glad you have been enticed over, though obviously not because of the Mets (I am learning that this means spread?)
So sorry I couldn't reply to you on other threads, I wanted to but understand I was on the wrong group! I didn't read properly and assumed it meant cancer patients only, not just incurable cancer patients only. Anyway as I said on another thread, are we not all fighting the same disease? But enough of all that nonsense.
How horrifying to be told you had it when you didn't, bad enough to be diagnosed with it when you do have it. I took a while to tell people as I kept thinking they may say oh no it's nothing after all, or there is a mix up. Buy hey ho I am here now.
I loved reading your post re Jersey and the lovely memories it must have conjured for you. I am so pleased you like it. It's a bit like marmite, some come for a few days and never leave, others move here and find they cannot cope with the no where to go smallness of it.
I love Jersey, but it is at times like this you realise that we just do not have the facilities. For example today I would love to just go home and shut the door after my chat. However I will have to hang about for a taxi, then hang about at the airport to get home and endure the flight maybe feeling like I will have to hold it together if it is rubbish news. I hate public crying! Though a few times I have walked home after a day of work with my brave face on to find I don't make it before some tears to escape. Luckily until this week it has rained a lot so hopefully people will have just thought it was rain.
I hope your radiotherapy goes well, it looks as if we may be starting about the same time. So we can compare notes. I should know the full facts later today about length etc and hopefully a start date. I think I should get aligned next week.
Luckily because we are away from home we get put up in England. The lung nurse said they hire us apartments, they actually look beautiful, they over look the harbour, so I guess I will see my escape route should I wish to run home to Jersey, and being by the sea will make it feel homely at least.
I am home from Jet setting to Southampton again and I have my plan.
They have confirmed I am a T4 N2 M0.
I will have 6.5 weeks (33 sessions) of radiotherapy. I will have 3 week cycles of Vinorelbine and cisplating (VP) chemo. I did ask how many rounds but he was vague and seemed to think see how it goes.
He mentioned immunotherapy but said that would be every two weeks for two years and was not sure how available to me it would be as I am an islander.
He reckons I will have my planning CT/tattoo appointment either end of this week or early next. Not quite sure on why he wants that so soon, as he said treatment will likely start on 8th May if not latest 14th. I also have to go back on 4th for my pre treatment appointment though I am allowed home for the long weekend in between.
They are still aiming for a curative intent, however he says he thinks I have about a 20% of being cured. It is a rubbish odd, but also not as bad as I invisaged when I was first diagnosed. 20% at least gives me odds to fight for. I was worried they would say it was already game set and match.
I keep hearing of and reading stories that live way beyond the statistics out there or that they have been personally told they will do, so that gives me heart.
Glad you are now home, had a busy day.
At least you now know what your plan is,another step forward.
Once we get our plan things do seem a little better as we know something is being done.
Keep us updated.
Take Care Ellie x
You Never Walk A Lone
It must have been such a long day for you
Hope you had a safe journey home
So pleased you now have all your treatment plan in place
I think you said they provide Accomadation for you at the hospital while your having treatment which is good, are you able to take someone with you to stay with you to give you some support
I haven’t had that particular Chemo combo but they do say Cisplatin is one of the best ones
With my Chemo’s there was never a definite number of cycles planned as they like to see how you get on with each one and they will check you out after each cycle
Keep us updated on how you get on
Thank you Ellie and Border C
Definitely feel like I am getting somewhere now. I went and got marked yesterday, another long Southampton trip and being the second in this week it really wiped me out.
Least the weekend is tomorrow and I can catch up on some sleep. Then just one full week of work left to do before treatment starts as I have the following Friday off for the pre treatment appointment in Southampton.
BorderC yes I can have someone to stay if I wanted, though it's a one bedroom apartment. Loads have offered to come over, I will see just how tired or how may side effects I have before taking anyone up on it. No point people coming if I spend the entire time sleeping/being sick.
So looking forward to starting now as I just want the pain to quieten down.
Hope you are both well
Reading your story makes me just want to shower you with hugs! I myself am from England, and wish I could just visit you and hold your hand! I hope everything is going well for you. I am 21 years old and having a few of the symptoms you just discussed, however am getting fobbed off by the doctors with a ‘trapped nerve’ because I’m ‘too young’ did you suffer with weakness at all in the legs? And an overall feeling of just wanting to go to bed? Because I’m so exhausted all of the time and the shoulder pain and arm pain I have is not even a painful pain really, it’s more of an annoyance! My hands are numb and my fingers are numb too or they feel like they have pins and needles, I also have headaches, but only in one side of my head at the side I’m getting the shoulder pain, my ear also sometimes becomes numb and that side of my face becomes very hot.. we’re these symptoms similar to the ones you experienced???? I’m sorry to hear about your experience, deeply wish I could physically be there for you in person.
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