Hi truffle shuffle,
Afraid I can’t help but just boosting you up as I’m sure one of the others will know.
Can’t help noticing that the normal range is quite wide (30-150) and yours is only a tiny bit outside that. Being a worrier myself I know that won’t give you any piece of mind so lets hope you get the other test soon.
Jan x
thank you, I have calmed down now, as we say dont borrow tomorrows worry, will have the blood test and see what it brings,
thank you for reply this site makes a big difference ,dosnt it
take care xx
Yes, maybe it should be funded by the NHS. It must save them a lot.
Jan xx
JanB - what a great idea!!! Fully agree with you.
Hi ladies,
well I’m just about ready for my appt tomorrow morning, well as ready as I can be I guess! I have written my questions down and already put them in my handbag so I don’t forget them!
I will post tomorrow as soon as I get the chance,
Thanks for all your support,
Kelly
-x-
Hi Princess, hope it isn’t secondaries, but if it is, this is what I would ask.
(1) If you do have secondaries in the hip, what is it’s receptor status (as it’s quite possible for cancer that was oestrogen receptive to become receptive to something else entirely). This is important, because you require appropriate treatment.
(2) If you have secondaries which are still oestrogen receptive, I would want to know why has cancer has progressed while on Tamoxifen, and what they propose to do about it - e.g, would Ai’s be an option?
(3) As your cancer has previously been shown to be Her2 positive, any secondaries could also be Her2 positive. Therefore, as you have had a bad reaction to herceptin, would something like Lapatinib be suitable ?.
(4) If rads are recommended, will they be giving it at a curative dose?. The thing is, with conventional rads they don’t like to repeat it, so you want to make sure that they get it first time round.
(5) If they say they cannot give you rads at a curative dose due to position of mets, ask about stereotactic rads such as Cyberknife. If they don’t know about Cyberknife, get a second opinion at The Marsden, Barts of Mount Vernon.
Good luck, and will be thinking of you.
hi kelly,
I too remember you back from 2007/08. I hope any pray all is okay and its just hopefully wear and tear.
I too have recently been experiencing a burning and twinging sensation in my hip but is not painful and it comes and goes going to see if it continues before i go to the doc but i too have my 4 yr check up in Jan. its only been a week or so but the worry never leaves you.
sending you love hope and hugs.
Sukes
Hi all,
Lemongrove - thanks so much for getting in touch and for your helpful advice.
Sukes - I remember you too from way back when! I hope your hip trouble turns out to be something and nothing.
Well I had my appt but not with my lovely onc, instead is was one of his team who I have never met before and I don’t really think he knew his ar*e from his elbow!!!
Anyway, after a fairly confusing appt the upshot of it all is I am seeing my surgeon tomorrow avo who will be giving me all my results and in a more thorough and organised manner no doubt!
I will post again soon as I can,
Take care all,
Kelly
-x-
Hi Kelly,
Sorry you had such a rubbish appt, it’s awful when that happens, have been there so know,hope your appt tomorrow is much bwetter and gives you the info and answers you need.
Will be thinking of you, let us know when you can.
Julie x
Hi Kelly,
Hope it went better today.
I used to have an onc who came in rattled off a few sentences then strode out again at each appt. She didn’t even sit down and certainly didn’t invite questions. I mentioned it to my BCN and she must have had a word as it seemed to improve after that.
Hope all goes well today
Jan xx
Hi ladies,
well I am in shock, the news was good!!! I was 100% convinced that I would find out that I had bone mets and I literally didn’t believe him when he told me I didn’t and it was just inflammation. I thought he must’ve mixed up my results with someone elses!! I had totally psyched myself up for bad news so when good news came instead I literally didn’t know how to handle it and was in a total state of shcok.
It was only when I was on my way home that it started to sink in. As soon as I got in and saw my doggies I broke down!! The relief is overwhelming. When I told my family and friends they were all in tears to and I think they had defo been more worried than they were letting on.
I can not thank you enough for all your support, especially over this past week when I have been pretty low. Thank you so much, I;m truly grateful,
Take care all,
Kelly
-x-
Ohh there is a god and i am so pleased for you.
that gives us all hope
sending you love and hugs
sukes
Fantastic news Kelly, celebrate away and have a fantastic worry free Christmas!
I’m so pleased to hear this. What a relief for you!
I am SO pleased!! Glad you can stop worrying now, go and have a lovely Christmas and enjoy your family. Good luck and thanks for letting us know xx
Hi Kelly
What fab news 
Sooo glad that your results were unexpected - in the best possible way! Now get on and enjoy yourself.
Nicky x
yeeeha,
So pleased for you. Have a wonderful Christmas.
Jan xx
Kelly here’s hoping life goes on for you now without any more scares!!!
Dawn
xx
I had Chemo in October 2009, Single Mastectomy and Radio and then a second elected Mastectomy a year ago. Have been on Tamoxifen for 2 years and now on Leterazole for a year and a quarter. I have recently started having pains round my back and it feels muscular but haven’t strained anything, if that makes sense. Particularly bad in the night when I move and hurts when I bend sideways. Had water infections so just had a Cystoscopy but that is all clear. Had a Bone Scan yesterday and am really worried. Also due to have an Ultrasound on my kidneys.Does any of this sound familiar? Really worried x
Hi everyone. I hope you don’t mind if I join in but your stories sound familiar. My diagnosis was 3 years ago and I am now taking Letrozole. 6 weeks ago I had pain on my rib cage and bone scan showed a hot spot. I went to the hospital yesterday for the results of the ultra sound, which was “suspicious but inconclusive” the consultant explained that something has shown up on the scan and they can’t rule out bone cancer, but it is small and only in one place. They are going to give me another CT scan in 3 months to see if there are any changes. Has anyone else experienced anything like this because I don’t know what to think at the moment. I just feel in limbo not knowing one way or another.