18-08-2006 08:50 AM
Hello all It is really difficult to decide what to do - and the decision is ultimately Juliet\'s, not mine. I totally understand her (and Jane\'s) wish to go with the oncologist and wait and see - especially since onc was very positive about it being nothing sinister (though I hate and disbelieve comments like \'you would not be looking so well if something wrong!!). Juliet is very good at compartmentalising, and will not let this prey on her mind too much. I\'m much more wanting to know straightaway - though we had to wait over 4 weeks for results of a chest x ray last autumn, and it was a terrible time. The problem being investigated that time eventually went away - I don\'t know whether it would have been worse for us just to have monitored it then, rather than wait in dread for news.
We were at private hospital on Wednesday getting J\'s herceptin. Nurses there were more concerned about J\'s symptoms - v low key, but you could see it on their faces. They suggested they could get an x ray sorted stragiht away - perhaps this keeness was because we would pay for it....
Anyway, think we may have a compromise. Although she has NHS check ups, the Oxfordshire \'herceptin expert\' (DR BL who I\'ve heard mentioned on the forums) also likes to keep a bit of an eye on her. Due for an appointment in a couple of weeks. We had thought of cancelling it - but I think it would be a really good opportunity for a second opinion. Would also give us another couple of weeks to monitor the cough - and see if getting any worse(or if she just wakes up without it one morning, Jane - I wish!) . We really trust Dr L and I\'m sure Juliet will go with whatever she suggests - be it x ray , or \'wait and see\'!
Will let you know how we go.
Smudge - really glad you are doing so well on the herceptin. Long may it continue!
17-08-2006 03:29 PM
Hi Sharon and Juliet Hello again,
I am glad that the onc thought Juliet\'s chest sounded clear, and I hope that her cough subsides in time. However, if there is no change in the coming weeks, please push for a chest x-ray. I am just thinking about me, and how I should have acted sooner. I got my results within a week, so the wait wasn\'t that long. Tell Juliet to listen to her body...and act if she isn\'t happy.
But I hope that all clears up naturally, and wish you both all the best!
PS: Herceptin is still doing the job for me. I had an x-ray check up last week and was told that there had been \"no change\" and mets only visible under microscope! Hope this encourages you too :-))
17-08-2006 08:46 AM
Hi Sharon I guess others will say you should push for an X ray but I can well understand Juliet not wanting too. Waiting for results is such agony, and if the onc thinks to leave it for now I\'d go along with that if I was in Juliet\'s position. Everything I\'ve read suggests that knowing you have mets a bit earlier doesn\'t make any difference to outcome, and in any case getting an OK X ray now doesn\'t tell you much about the future.
I hope Juliet will suddenly realise her cough has disappeared as mine seemed to. I hope that herceptin is her wonder drug.
very best wishes to you both
16-08-2006 11:49 AM
wait and see Hello all,
Juliet had check up yesterday. Onc said her chest sounded clear, and he didn\'t think that her description of breathlessness matched his definition (ie not serious enough!) He reckoned it was probably the herceptin and said that he was loath to scan at this point - aalthough would do it if we wanted. Juliet decided to go with the \'wait and see\' approach, with the proviso that we\'d contact our gp for a chect x-ray as soon as it looked like it was getting worse. Not sure how I feel about this. I guess I\'d like her to have an x ray just to be sure. Suppose we\'d still have 3-4 weeks of worry waiting for results of that though...or did last time. I think Juliet finds it easier to put out of mind than me, but that\'s a good thing - doesn\'t need both of us worrying.
Perdy - thanks for your email. Yet again clear that the treatments lead to same symtoms as any recurrence ! Just to add to the needless worry!
Am off now for J\'s next herceptin....
Thanks for all your support,
11-08-2006 03:39 PM
Cough/Breathlessness Dear Sharon,
I also had a cough about six months after completing treatment. My onc did a chest x-ray which was clear. He told me that Tamoxifen can cause lung inflammation leading to a cough and breathlessness which is maybe what your partner is experiencing now. This will either clear up on it\'s own or if it gets worse you doc may suggest some medication or coming off Tamoxifen for a while until it clears. Also, radiotherapy can sometimes cause coughing and breathlessness which may appear for anything up to two years after treatment. No treatment is needed for this and it will clear up in time. It will however take a while. My cough took 3-4 months to go so hang on in there.
If chest x-rays are clear, then it is very unlikely to be anything sinister.
11-08-2006 08:36 AM
thanks Buzzer! That\'s really interesting that you had surgery - I\'ve not heard that much about surgery for mets, esp in liver / lungs. Great that you\'ve been well since!
I\'m a little tired this morning - lying awake counting the coughs! I feel like I could do a spreadsheet of the timing and frrequency.....poor Juliet, I try not to make it obvious that I\'m listening but I\'m not good at being surreptitious! What I don\'t understand is how the cough could have gone away and come back again...oh well, perhaps the onc will have some answers!
with all best wishes,
09-08-2006 08:32 PM
hi sharon just wanted to say like smudge i had similar symptoms and i would ask for a chest x ray at the next check up as this was how my lung met was picked up i only had one and i had this surgically removed and then 6 lots of taxotere and i have been absolutely fine for the last two years no treatment whatsoever still keeping all fingers and toes crossed though. Hope it is only a normal cough but best to be reassured by a x ray
09-08-2006 04:43 PM
Hello Smudge, Thank you for getting in touch. Symptoms do sound rather similar - and we know we really do need to get it checked out. THe onc we are seeing on Tuesday is very new - last time we went it was his first day and he looked terrified! Prior to that we\'ve had the \'professor\' - main consultant, who is rather laid back. Am hoping that the new one will be enthusisatic and thorough!
Thanks for your commetns about herceptin and cough - I\'ve just been looking this up, never realised it was a side effect!
I shall tell Juliet what you say about going to the gym three times a week - that will impress her, neither of us does much exercise unless forced!
Glad the treatments are working so well for you.
We\'ll let you know how things go.
09-08-2006 04:13 PM
Hi Sharon I really hope that the cough is nothing more than that, but I would advise you and your partner to get it checked out. At least to get peace of mind...
I had a niggly cough last year (started about March-time), and gradually got more \"racky\". In April I noticed I was getting breathless running up stairs/swimming etc..I went for a chest x-ray in May (I should have gone earlier I know), and they found \"clusters\" of BC cells in both my lungs. They said \"thank goodness you came to see us when you did\"...although my onc had listened to my chest in March and said I was fine !!?? Anyway, I had 6 bouts of taxotere, followed by herceptin which I still have every 3 weeks. Fingers crossed I am doing very well, although I do cough occasionally (not sure if this is normal or not, but I think Herceptin can make you cough).
Just telling you my story to hopefully reassure you that if it is bad news, there are still things to be done. Put it this way, I now go to the gym 3 times a week, and feel absolutely fine! Touch wood this continues!
Good luck - I\'ll be thinking of you,
09-08-2006 01:56 PM
Hello Jane You are right - everyone has different symptoms, and some seem to have none at all....Think I just wanted to vent my worries somewhere where I knew people would understand! Think part of me also hoping that someone would say that for it to be mets you\'d have to have a more serious cough, clutching at straws perhaps! Thanks for telling me about your cough (now, thankfully, an ex-cough) - that gives me something positive. J. finished her first lot of treatment last summer - and there seems to have been a constant stream of \'near misses\' and worries since then - same for everyone with BC I\'m sure. She has been pretty well over the summer though, less tired - back to work full time - and we were starting to get used to that feeling. Feels a bit like sticking your head up over the parapet of constantly worrying, and now feels like that might result in us getting shot down!!!
Anyway, all may well still be ok - and I will try to remain hopeful. So glad to hear that you are still going strong, with NED. You are one of first people I remember from this site and I always read your posts with interest...
09-08-2006 12:40 PM
Hi Sharon Really sorry to hear that you and Juliet are worrying about her cough. As I think you know no one can give you the reassurance you want on the internet and I guess that some people with secondaries in their lungs might have had similar symptoms to Juliet and some might not. The symptoms she has could be mets or again they may not be.
I don\'t have mets. but did worry quite a lot about a niggly cough I had for about a year after treatment finished. I always reported it to my consultants and was reassured after routine chest exam. I never pushed for tests..for me the reassurance after clinical exam was enough. I realised recently that my cough has disappeared (though i started to worry about some other vague symptoms.)
Really hope all is well with Juliet..you are doing right thing to report to onc next week. If onc is concerned they will suggest x rays/scans, and Juliet might want to insist on them if this will help lessen her anxiety.
Its so hard living with this s** disease and the fear it brings.
very best wishes
09-08-2006 10:29 AM
cough / breathlessness Dear all,
I can imagine how irritating it must be to constantly have people asking your advice about symptoms - and I do apologise for doing this. Do feel desperate enough, though, to ask anyway - so sorry!
My partner, Juliet, was diagnosed 21 months ago. Had chemo, mastectomy, rads, tamoxifen and has been on Herceptin since Feb. At the beginning of the summer she got a slight tickly cough. Only coughing about once an hour, and very little at night but we still spoke to onc at a check up. He said her lungs seemed fine and just to keep an eye on it. Over the next few weeks it more or less went away - coughing much less, but not totally gone. However, last couple of weeks it is back at same level it was originally, perhaps a little more of a \'bark\'! Soemtimes once or twice an hour, sometimes not for several hours. Moreover she has started feelign slighlty breathless after excerting herself - more in the very hot weather but it has not totally gone away now it has cooled slightly.
Obviously we are very aware what this might mean, and will ask the onc at next check up next week. I just wondered though, if this seems to fit the pattern that any of you have had for lung mets. Although reassurance would be lovely, I guess I\'m just wanting to get things straight in my mind so that we can be prepared for what may be ahead.
With best wishes to you all,