I was diagnosed about 10 and 1/2 years ago with b c and opted to have a double tram flap immediate recon.I have had secondaries in my spine and lungs for about 2 1/2 years.
Since secondary diagnosis things have been stable (as far as I know) on herceptin, femara, zoladex and zometa.
My last scan of spine(mri) was a month or so ago. It showed no change and nothing new.
Over the last 7 or 8 months I have intentionally lost weight (about 2 stone ). After ten years my recon has shrunk (cancer affcted side). Onc is not unduly concerned and said she would be more worried if breast had swelled.
I am not bothered about the appearance but more worried about chest wall and what may be happening. She says chest wall would have been scanned with last ct.
Anyway (the crux of it )…turns out my last lung/chest ct was not april as i thought but at the end of last october (09).
Onc said if I wanted a scan…fine. However she knows how bad my scanxiety is and how loopy and then physically drained i feel.
Basically she left it up to me, which is lethal. Scan now (ie mental in run up to christmas but with full knowledge) or wait a bit.
I would value some opinions. I have always been grateful to be able to see both sides of an argument. However it is just not helping…
Thanks for replying. I do suffer with terrible anxiety and did before breast cancer.
You are right, either way is bad. However the anxiety I suffered due to last lot of scans was horrendous. I had continual deja-vu and had whispery type voices in my head.
Think I am just hoping for a magic solution.
Thanks anyway.
Just come on to see if there was any news from you. Sensed you were very worried last night. I am sorry you have this dilemma - it’s not an enviable one to have.
As you say, it’s either anxiety for a shorter length of time and have the scan and results before Xmas or worry yourself for a much longer time and let the anxiety build up over Xmas and be scanned in the New Year. Whichever option you take won’t alter the results. Have you the time to get lots of Xmas stuff done early so you’re not stressing about getting it all done near scan time???
You know the only way to settle your mind is to have a scan and I personally would have it before Xmas but that’s me putting my experiences and attitude in to your head and I don’t want to be responsible for giving you more anxiety.
Can you ask them if they would be able to give you the results quicker if you had it before Xmas in view of the time of year??
Hope you see where I’m coming from and that you are able to make the decision that is right for you and your family.
First of all many congratulations on losing 2 stone - that is a tremendous achievement on that drug cocktail:) On the scan - a horrible dilemma - facing similar myself for a recent pain which may or may not be another bone met. I would go for the scan sooner rather than later myself - your onc doesn’t seem overly concerned if the decision has been left to you, and I would have thought if everything else is stable as per your last scan, odds are the chest wall is too.
I wonder whether you have considered hypnotherapy to help with the anxiety - it was something I wanted to do myself during chemo when I got a bit phobic about the cold cap and it was making me sick each time, but in the end didn’t have enough time to arrange it. Just a thought.
Sorry to hear that you are anxious. As LIz says we are all different and react to things differently. I find I cope better knowing what I am dealing with as the imagination is often worse than the reality, although admittedly, that has been rare for me! Whatever you decide I will be thinking of you, you have been very supportive to me and others on this forum and I want to do the same for you.
It looks like I will have to try and get on the ‘phone’ on a Tuesday night and ‘chat’ to you and Liz and others!
Hi Julie,
I think its so much easier when we are actually told what to do rather than be given a choice dont you, either way its horrible and will no doubt be a very anxious time for you ,
If you go ahead and have the scan now you will worry like hell untill you get the results , but at least you will know ,and all fingers crossed for you that all will come back ok , and you can get on and enjoy your christmas without the awfull added extra worry.
If you do decide to wait for a bit, you will still worry like hell, proberly even more so becauase it will be gnawing away at you and you wont be able to enjoy christmas the same as it will be on your mind all the time , its a tough one though, and i know it cant be an easy decision to make, but I think if it were me i would proberly have the scan and get it over with , because the not knowing is often worse mentally i think ,
Its all crap though isnt it, but always do what feels right for you because only you can decide what is best for you and how you feel, HUGE BIG HUGS to you whatever you decide, thinking of you and keeping everything crossed that everything will be ok .
Sorry I missed you last night, particularly if you were feeling in need of some support!
You have had some good advice already, but to add my opinion to it, I think if I was in your place (and I am lucky that I don’t get too stressed and anxious about waiting) I think I would rather know in case I was worrying unnecessarily! I had my latest CT scan this Monday and although the canula insertion left me particularly bruised, with an ugly purple hand! I am reassured that I will be up to date with what is going on, before Christmas.
Hope you manage to make a decision you are happy with. Whatever YOU decide it has to be right for YOU. Take care and hopefully I will speak to you next week.