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!
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. 
Hi Ginajsy
I just wanted to come along and say Hi, and to wish you all the very best with your treatment.
I too am a lung cancer patient at Southampton General. I thought I would mention the lovely McMillan centre on level B, as I think you may be spending a lot of time at the hospital. It’s tucked away but quite easy to find, and can be a lovely haven away from all the noise of the hospital. You can get a coffee and a biscuit. Have a chat if you want to, or just sit quietly in a comfy recliner chair.
They also offer lots of services, reflexology and the like.
Sorry if you are already aware of this, just thought it might be useful.
Wishing you the best
I haven't updated this in a while, so will do hopefully a brief one as my next update will be after my post treatment CT.
I finished the 6.5 weeks of radiotherapy and had the last chemotherapy as mentioned. It was Carboplatin for the last one, which as promised did not make me sick! But still very sleepy, which is fine by me.
I flew home a couple of hours after my final zap. Relieved to be home, but very drained from it all. I wasn't able to just get back to normal as I had hoped.
Edited to add
Cisplatin and Vinorelbine (VP) chemotherapy alongside 33 fractions of radiotherapy
I had this treatment and the below is an outline of my experience so others may know what to expect. I had a middle ground experience of treatment, so hoping it will give a fair view of it for people wondering.
I changed to Carboplatin on cycle 3 so I can give a little info on Cisplatin’s slightly less evil sister too.
Just to give more background, I started both chemotherapy and radiotherapy on the same day. I had 6.5 weeks of radiotherapy Monday to Friday (or Saturday when it was a bank holiday to catch up) alongside 3 cycles of chemotherapy. I have not had any surgery.
Chemotherapy
Practical information
Treatment
Before they start you will be given several tablets to take, this is anti-sickness, steroids and tablets to make you go to the bathroom a lot as the Cisplatin is not to sit in your kidneys as will cause damage. This is super fun with your iv lines all hooked up, and stand and the tiniest bathrooms ever! Trust me, get a seat close to the bathroom, by the time you have paused the infusion, unplugged and untangled and wheeled to the bathroom and maneuvered you and your stand into the cubicle, it will almost be time to want to wee all over again!
Vinorelbine will be given first. The line is put in and flushed. I think they give you a tiny bit of fluids first. The chemotherapy is then given and only takes 10 minutes for the first one. The nurse has to stay with you during this infusion and will ensure that you feel ok whilst this one is going in.
You are then given an hour of fluids through IV to prepare for the Cisplatin (toilet time!).
The Cisplatin infusion takes 2 hours to complete (you may have a nap if you can keep off the loo long enough.
You then get a further hour of fluids after the Cisplatin to ensure it is all flushed through properly.
Because of this do expect cycle 1 day to take about 5 – 6 hours in chemotherapy alone. Take books, knitting, magazines or a friend to keep you company. Each person is usually allowed one person with them. You will be offered hot and cold drinks and sandwiches and snacks etc. Day 8 is very short and quick being as it only takes about 10 minutes to actually give the infusion.
My experience
I started to feel hot and a bit agitated towards the end of the cisplatin infusion, I was beginning to feel sick (suspect the anti-sickness had worn off by now as it took so long). I went to pharmacy to collect the prescription and found myself having to leg it to the nearest bathroom and projectile vomiting quickly ensued. Several throw ups and a lot of sweating later I got my prescription and found my way in the maze to radiotherapy (locating several more toilets on the way to throw up in). – I will pick up from here in the radiotherapy bit.
I felt like I had similar to norovirus for the next three – four days. I spent the rest of the day throwing up and sweating. I got back to the apartment and fell asleep drained despite the steroids. The next day whilst warned that I would be constipated, well let’s just say for me it was the complete opposite and to never trust a fart whilst on chemotherapy! I wasn’t physically sick after the first day, but didn’t feel like eating anything, I think I managed a banana on each of the two days to follow and finally started to feel hungry on the 3rd day after’s evening. After that back to normal hurrah!
I was also absolutely fine on the second week of the cycle so it had to be all the Cisplatin’s fault.
For cycle two I was given the tablets for anti-sickness via IV before the infusions, they did help in that whilst I was not physically sick (though very close to it) I still felt really nauseous and followed the same sort of eating pattern as the first week. I also had a funny turn on the third day of cycle 2 after radiotherapy. I went to MacMillan on site who called acute oncology as I was pretty unresponsive (weak, sweating and dizzy). They had no room so I was taken to A&E. They gave me such a thorough check over and found that my blood pressure had dropped really low (I have naturally low blood pressure anyway so with the sleeping and not eating I think this just made it drop too low). Lots of water feet higher than my head for an hour or two and I was released back in to society.
Due to this for cycle three I was given Carboplatin on the third cycle and I was fine (didn’t even have the anti-sickness by IV). Whilst Carboplatin is kinder on the stomach it tends to be harsher on the blood counts. I didn’t have the second part of cycle 3 as radiotherapy had finished and I was not tolerating it that well, so they decided to leave it there for me. My blood counts were dropping each week and I suspect they likely would have gone too low for the second part either way.
My Tips
Radiotherapy
Practical information
Treatment
You will wait to be called to get changed into a gown. I think necklaces have to come off and all top clothing and underwear. You will be asked your date of birth and address each day before they start. You will then be lined up by two to three people (a mixture of men and women). I regularly told them off for their cold hands! They will be calling coordinates to each other. They lift you about 10 feet in the air during this, do not panic they do lower you back down a bit and they really will not let you touch the bit hanging off the ceiling, though they do seem to like to play how close can they get you to it before they stop! Once in position they will not allow you to move and they will leave the room. They played music for me when I was having my treatment as you feel very alone whilst they go and lying still staring at the ceiling is very boring. They may even let you request what music you want (my team let me). If you need to be scanned this is done now. They can see you on the camera and say any problems to wiggle your hands and they will stop and come back. Once the scan is done (the machine rotates round you like during treatment) the red dot light above goes out and then the treatment will start. It is completely painless and for me all I felt was the slight warmth as it rotated. They will then come back and tell you, all is well and you can move again (always wait to be told you can move) occasionally they will need to stop part way through to re kick over the machine so if you move they have to re align you and you will be some way off the floor still so wait till they put you back down!
My experience
I found the radiotherapy part easy. The first day I was busy being sick and had my little sick bowel between my ankles being told not to move 10 foot in the air. I had no time to worry that I was half naked in front of a room full of strangers. After this it was fine and my team were lovely to me. I moisturised each day (though they say do not moisturise before the radiotherapy that day). I did not realise I would get an ‘exit wound’ on my back too so only did the front and didn’t realise just how high up they were treating. I did burn a little more so on my back as didn’t realise to moisturise here. In the last week or two I started to peel slightly but it all healed well and I was fine. It takes some time for the dry skin go back to normal. They say to stop moisturising if the skin brakes so keep talking to your team. There are also some moisturisers they say not to use. I used Moogoo throughout my treatment as I knew it was a safe one to use and my skin seemed to fair well all the way through it.
You will find you get very lathergic throughout the treatment, after about two weeks it will really compound and you likely sleep a lot. Once treatment stops about two – three weeks after you will find the side effects will be at their most severe but they will wear off over the next few weeks.
I started having problems swallowing after about three weeks as it can inflame your oesaphageus. I found I had to remember to take smaller bites and chew a lot more. I was prescribed liquid paracetamol to take a few minutes before eating to help.
You may develop a dry irritating cough during treatment that may go on for some weeks after. I kept a glass of water beside my bed as I would wake myself coughing during the night. It did go, then came back for a while and has gone again for some time.
My tips
After treatment
You will find the effects of treatment stops will get worse before they get better. You may have some neuropathy, coughing etc most of the time this will slowly go. It took about 2 months for the lathergy to wear off and my energy levels to come back.
I managed to return to work a month after treatment stopped on a phased back basis starting with mornings and increasing weekly.
Overall listen to your body, if I tried to do too much I would have to rest for sometime to get my strength back and found this is when my temperatures began to creep up.
Long term I have less mobility than I used to have and muscular aches and stiffness that developed some weeks after treatment, though I am hoping this will gradually wear off and go.
Treatment was really successful for me, I am not longer in pain and the tumour showed massive reduction so it was worth it!
End of Edit
I had a lot of lighthead, feeling breathless, dizzy tired. I popped to my GP for some bloods, as wondered about anaemia. They showed red cells and whites were low. Very slightly anaemic but not iron deficiency caused. Was told to repeat a month after these.
About 2.5 weeks of being home, it hit me that I would not be completely back to my old self, and this was a hard thing to accept.
After about 3 weeks, the lathergy finally wore off and I felt better. I learnt from trying to do too much and paced myself a bit more. I found sitting at home was starting to be negative. Time off is great at first, but then you realise everyone else is at work, so you are left with just your own thoughts.
I went for a local oncology appointment after about 3 weeks of being home for the first time. I had so many questions I wanted answering, re size, as I wanted to gauge how quickly it was growing, Being as it went from being missed on the November Xray, to me seeing how huge and obvious it was on the may Xray, just before treatment started. But she was on holiday and I had a stand in. Frustrating, but I will ensure I get my answers next time.
3.5 weeks after finishing treatment, I returned to work on a phased basis. Starting with a week of mornings only, then gradually increased my hours. By the fourth week I was on full time hours. The second week I was tired and wondering if it was too soon, but mentally I needed my mind taken off the wait and wonder for the CT.
I managed to squeeze in a 35th birthday during this too!
The fourth week back at work my skin condition kicked off and I got a nasty infection of cellulitis, despite already being on strong antibs. They put me a third strong one for a week, which thankfully seems to be getting it under control. I am finding that my temps start to climb or infections kick in, is when I am trying to do too much too soon.
I tried to have my repeat bloods done. I sore a different GP and he asked if I was on medication for my thyroid (I am not!) so am not sure if he was asking because they were high/low or just wondering why other doctor did my thyroid. He couldn't get any blood out of me. So I am off to phlebotomy at the hospital sometime this week to see if they can manage it. But he doesn't appear to have asked for thyroid repeat on the form he gave me to give to them.
I got my CT date after chasing twice for the 21 August. The second time I chased I was told it had been requested but couldn't be booked.... a few days later I got my appointment letter. Got to love hospitals!
Once I had that, I phoned oncology to tell them book me in for results as told to at my appointment.... waited patiently for the letter. About 3 weeks pass, so I phoned them Friday to find out what was happening. Only to find I had not been booked in grrrrrr. Again, they have promised to book me in and send a letter... so I think it may be a longer wait than it should have been for the results. I am not sure why it seems that nobody in the health system can do anything the first time of asking.
I also rescheduled my failed colonoscopy when I got back. I am now booked in for 4th September, so I need to phone (again!) to ask them to tell me when I need to stop eating and what I can eat, in the days running up to the appointment, as they didn't send it to me with my appointment letter as promised.
Overall I am doing well. I am off the pain meds. I am still uncomfortable, more so in my elbow at times. I am sleeping as usual at night. Doing things I did before. I still get tired and have to rest, but managing full time work again and errands again.
I have a lot of annual leave to take still, Once I have my CT results and know where I stand, if I need more treatment, I am thinking of doing 4 day weeks to the end of the year to help me through.
Mentally I am coping much better. I wish people would take my mind off it, rather than remind me of it by asking me about appointments etc all the time (especially when at work and I am just trying to make a cuppa, get my printing etc). I asked people not to when they were originally told about me. I know people mean well of course and probably think it's ok as time has passed. I don't think the realise that you live with cancer, not that you get treated and it goes away.
Some people have disappeared from life since I told them, some I never thought would. Others have truly stepped up, that I never thought would really be affected.
So far, I am not seemingly to be worried about the scan. If anything, I am calmer the closer it comes. I do worry about aches and pains that I wouldn't have before. Maybe because when I was diagnosed, I had not even thought that they would possibly say cancer. Though in hindsight, I realise I had all the symptoms including the night sweats a few times. I had thought I must have had a really scary nightmare, it was only reading threads on this site I realised they are also a symptom.
I do expect that it will have spread, if not this time, it think it will one day. Part of the reason I wanted to know how rapidly it had grown. I am not being negative or down when saying that, just I think preparing for the worst but hoping for the best.
I do hope by keeping a sort of thread/blog diary of my journey, it may help someone in the future that finds this site full of questions just as a did and finding so few answers from actual lung cancer patients. Though everybody's journey is so different.
As I say, my next update on this thread should be after I get my post treatment CT results. In hopefully 2/3 weeks
Keep well everybody 
