While tappng away on various forum topics I’ve been having my own private nightmare this week.
Last week I got what I thought was a ‘good’ CT scan with no spread to my lungs and liver, but substantial increase in tumour number and size in my neck and chest wall, and possibly a few nodes in my pelvis (you know those might be nothing ha ha pin pricks that werenn’t there last time.)
I had for a couple of weeks been getting quite severe nerve pain in my shoulder for which tramadol which made me nauseous, for which siwtch to oromorph and anti sick meds. Meanwhile I notice my left eye (bad side) looking ‘funny’ droopy and a bit bloodshot. Then on Monday, at a BC event of all places I open my big mouth to speak and out comes a squeak. Spent Monday coughing and apologising and thinking oh it cant be lung mets cause I only had CT last week. By Tuesday the voice is worse and I’ve uncoverd Horners sydrome from information fron dawnhc(the eye), and Pancoasts syndrome from someone else (explains the hoarse voice, and the pain and the eye). GP today who has to look all the syndromes up, is very nice…dishes out various drugs…more painkillers, anti depressants, sleepers, anti sick…first time I’ve had one of those big packets of dtrugs for very ill and very old people. GP consults onc but looks like it will just be go ahead with taxol as planned next week.
I have been really upset all week…and scared about what next? I have one of those big booming voices that likes to hear itself and I am now reduced to the strained squeak of a little frighened girl…phone calls a nightmare and asking for a cappucino in a cafe is hard work…daren’t ask if it could be permanent…roll on taxol…this is the first time I’ve said roll on to the chemo…the first time of real cancer symptoms, of a feelng that my body is beginning to let me down all over the place, of cancer taking charge.
And why did I not know about this as a possibility.?..yes its rare…but rare is extra scary.
So would love to hear from anyone who knows anything about Horners syndrome or Pancoasts syndrome.
Me too also. You sound so down and I so wish I knew something about the syndromes to which you refer . I hope your week is less sh*t next week and that someone can offer you some informed comments.
I know we have talked about the Horners syndrome Jane - but maybe worth repeating here for those who haven’t heard of it. If you google the syndrome it gets quite technical. But for those of us with lymph node problems in the brachial plexus thru to the neck area it would be hard to determine exactly where the problem arises. It is damage to the sympathetic nerves that serve the eye. Mine was due to a lot of scar tissue and damage from a no. of lymph nodes in my neck up to my ears. I never noticed it start but friends told me that had noticed the difference in my eyes - obviously not really cared to look at myself too closely around that time!. My eyelid on the left dropped and the pupil dilation lagged well behind the other eye which are fairly typical signs of Horners syndrome. I also have a lot of damage at the top of my spine which may have contributed. It rarely bothers me unless I am tired then it becomes more obvious.
But interestingly Jane in my googling I came across a connection between the Horners and the Pancoasts syndrome:
“Horner’s syndrome is acquired as a result of pathology. Although most causes are relatively benign, Horner’s syndrome may reflect serious pathology in the neck or chest (such as a Pancoast tumor (tumor in the apex of the lung) or thyrocervical venous dilatation).”
(Just spotted reading back that someone had made that connection for you as well).
I did have voice problems during the time the scar tissue was in my neck and I tended to sound a bit hoarse and croaky.
Obviously in our case we know the underlying cause is the cancer and the oncs tend not to be too concerned about the horners and pancoast but rather to keep the cancer under control. Rooting for you Jane and hope the taxol is going to bring good results.
Am sorry you are having such a crap week, but like the others I dont know anything about those syndromes so cant actually help u, but just wanted u to know that am thinking of u and hope you get things sorted out quickly, as you have been very supportive to me during my time on here.
hi jane ,sorry i missed the follow up forum on monday ,we met on the sept one ,we were on the naughty table!!.sorry to here your going throught the mill ,just wanted to wish you a better week and a rapid solution to your problems
take care
lynn x
I am sorry you have had a bad week with this…I am getting into the same sort of mood- roll on chemo, its got to be done. I haven’t really experienced anything like you say above - because although I have quite extensive mets the symptoms are not really significant - just hints of what it will be like when it gets worse. I don’t know anything about pancoasts or homers syndrome although i do remember flipping through that when I first noticed enlarged nodes in my neck…suspect your voice will come back once taxol kicks i, maybe you have a cold on top of everything?
Hi Jane,
sorry you have had a s…t week it comes to something when we actually look forward to starting chemo! I know what you mean though we put up with so bl…dy much I am sat at home bones not moving, legs for some reason will not go where brain is telling them.
Wishing you all the best with taxol next week.
Re pm I sincerely meant it when you and your partner are up to it.
To hear that someone who is such a star on these sites is suffering such a terrible week makes me sad, but I hope that hugs help until you get the Taxol, which I hope will give good results to you.
I wonder if the psychological impact is worse if you call something Horner’s syndrome or Pancoasts syndrome rather than a gammy throat or feeling like crap
I felt better when I discovered an oncologist was a lumpologist, don’t know why
Jane - you’re just as bad as me as getting unusual symptoms from your cancer. It’s horrible being unusual. Really feel for you with your voice - having enjoyed lots of chats with you so can’t imagine you with a ‘little girl’s’ voice at all. Sometimes when my lung mets have been growing, my voice gets very husky but the chemo clears it up so I’ve got my normal voice back but it’ds so frustrating.
I’ve always had a slight droop to one of my eyes which gets worse when I’m tired so get sick and tired of seeing these crappy photos of me with a droopy eye.
Can understand you’re scared right now - so am I. I’ve gone into burying head into activities like card making and writing letters so that I feel I’m not wasting time and just hope people appreciate the fact that I’ve made them thank you cards.
Hope they give you the right dose of taxol next week - diarrhoea was a problem with the high dose but not too bad now on proper dose. Do get tired but my sleeping pattern is all over the place and I seem to sleep in the afternoon and then am up in the middle of the night. Must try to get that sorted.
Have you sorted out the pain and nausea now. Do get in contact with the hopsice people if stuggling- I’ve found them the best by far for symptom control.
I’m sorry you’re in such a bad place - so many of us are at the moment = not that it makes it any easier to bear.
Am busy this week but free mon, wed and fri the week after if you’ll up to it. We can sit and have a good moan together then.
If we all stick together, we can get through this. I know you hate the ‘ill’ part but you wouldn’t be human if you didn’t feel like that.
Know nothing about these syndromes but know you are making the right decision to start taxol now and hoping it will help with the pain etc. Am around now the kids are back at school so hopefully see you soon. Am happy to come to you if easier and we can console each other.
all the best for next week
Love Kate
I don’t really care what they call it. I haven’t got a cold or a gammy throat and neither have I got a voice that works properly, I’ve got growing cancerous tunours pressing on nerves and I’m s*** scared that I might never talk properly again. I’m entering the world of disability where people address remarks to my partner in shops because they can’t hear what I’m striuggling to say , and strangers in the street look annoyed beacuse I can’t give them directions.
Hi Jane, I am sorry to hear you are feeling bad and so scared. There is nothing worse than the ‘does she take sugar syndrome’? in shops and public places - being treated as though you are stupid not unwell.
Jane,
saw your post and was very sorry to hear that despite your great ability to take on board new set backs, life sent you such a c…p one, which has affected you both mentally and physically. Losing your voice is such a tough tough thing, as it is so much a part of who you are and I think would leave me feeling quite vulnerable, in similar circumstances.
I think I have gathered from your posts that you like information and fact, I do hope I have gauged that correctly.
If you feel up to it, look at the 'www.patient.co.uk ’ site which gives information and photos on Horners syndrome and can link you to another on Pancoasts syndrome. It is quite medical but there are a few stats in case you don’t want to head that way just yet. I think the site was quite good and balanced as it is for patients rather than doctors. By the way they use a cisplatin based chemotherapy for it, so you might feel it worth mentioning before you start the chemo. I don’t know whether taxol is in that group. There is a lot on the internet if you search, including a trial that had gone well but it seems to come from other cancers and conditions too so you do have to read quite a bit to sort ot things that are relevant to BC.
Wishing you much luck with your new chemo and minimal side effects
Lily
Thanks for your concern. Have already done the internet and know that page!
Basically it seems that pancoasts’s sydrome is usually associated with a particular kind of lung cancer but can also (rarely) be caused ny breast cancer.
I am starting taxol on Weds…the aim is to try to shrink my neck tumours and thus hopefully relieve the damge to the nerves… which is causing all my symptoms…pain, droopy eye, hoarse voice. I have already had a chemotherpay in the platinum group and it didn’t work very well (carboplatin.)
As for the stats…well the pancoasts’ stats are much better than my breast cancer stats! These days its not only the fact I’m going to die of cancer that bothers me but exactly how and when.
Hi Jane - sorry to hear your news and the fact you have had such a s****y week. Given the syle and tone of your posts I can imgaine being disabled by a wonky voice would really p**s you off.
Don’t know if this helps but I knew my cancer was back due to a persistent cough and the fact I literally lost my voice in a day or so. Chemo has got it back for me; although it isn’t as as strong as it once was - I cannot talk loudly or shout anymore. When I’m tired it gets a bit croaky and husky and weaker, and its definitely more high pitched than before.
Given you are about to start Taxol hopefully this will help.