Secondary Breast Cancer - ongoing treatment

Hi Paul

Sorry I cant answer your question, yes it could be muscle strain etc - I have pains all the time and aches and wonder every time if its the dreaded c again.

The emails on here should work but the site is being improved so it could just be a glitch. I dont understand the fone line tho.

Sorry I cant be of more help but if you dont get any answers try and get on after 9. We have a chat room and there are lots of folk who might have the answer..... we are a friendly bunch and very supportive.

Take care
Lesley

Thanks Lesley for getting back to us, this is Carole - Paul's wife. I've just got back home after having X rays on my arm. I had a bone scan 5 weeks ago because of the problem with my arm and when I went for the results today they told me about the hotspot. I had a breast reconstruction last February (2007) and everything was fine until last November when the pain started. However, it has got a lot better than it was so my consultant said that was a good sign, but obviously couldn't give me any reassurances until the X rays have been checked out. Because I see my GP regularly (Zoladex every month) he's aware of the problem with my arm and he did blood tests a couple of months ago and said that the calcium levels were normal when the results came back, and that was good, so at this moment I'm trying very hard to remain optimistic until I get the X ray results in the next few days. Its going to be a tough few days though....!

Hi Carole

Hopefully results will be good its just its all a waiting game!

Please let me know how you get on and if you do have time please pop in to the chat room of an evening. I think you would find it worthwhile

Take good care

lesley

fingers crossed that you don't have to wait much longer for the results and that everything is ok xxx am sure that if anything had shown up they would have been straight onto you, as Les has said, the site has had a bit of jiggling about of late, and has just recently been merged with the macmillian, so it might be as well to ring again tomorrow morning, hopefully they will be able to give you a bit more advice, anyway, you will get lots of support from everyone on here
lots of love, and let us know when you hear
Alisonxxxxxxxx

Hi Lesley and Alison

Thanks very much for getting back to me. Unfortunately I got the bad news this morning that the cancer had spread to the bone of my arm. So today I've had loads of blood taken and a CT scan to see if its spread to the organs, so more waiting...!

I also have to have an operation on my arm - pin in it - as the bone is dangerously thin and could break at any time ...... I can honestly say I've had better days!!!

I think when I've got my head around everything I will join in the chat, but Paul and I need to come to terms with everything first.

Thanks again for the support.

Regards
Carole

I'm so sorry about the latest diagnosis, you must be in despair today. I just wanted to wish you well with the treatment and that it succeeds. Also that the other scans all come out clear. Hugs xxxx Penny

Hi carole

Sorry to hear your news. Just remember that if you ever feel like a rant a chat or even a huge scream we are here for you.

Take good care
Lesley xx

only just caught up with this, you poor thing, honest Carole, we are all here for you and Paul, we will give you both all the support we can whilst you go through all this xxxxxx we are always about
lots of love
Alisonxxxxxx

Hi all, thanks for the kind words.
Today we are hoping to hear the results of Caroles scans. Actualy we were hoping to hear yesterday.
The results should indicate if 'IT' has spread to her liver. The doctor found some specs on Caroles first scan, so yesterdays further scan should confirm yes or no.
Sorry I'm just waffling and I'm not sure what I want to say. I just want to say something!!!
We thought all this was over, or at least almost. Looks like its just the beginning.
Bye for now. Gloomy Paul

p.s. The name Samdico is from out little boy - Sam. He's four in a couple of weeks, and he means the world to us!

Just a quick line to wish you all the very best for the results today. You're probably sitting in one of those impersonal NHS waiting rooms as I type, so I am sending waves of wishful thinking to you. Thank you for keeping us up-to-date, Paul. xxx Penny

I'm new to the site, but i wanted to send you my best wishes and positive thoughts for good test results.

Thinking of you all.

Jean xx

Thanks Jean for your words :)Sorry to hear you are a member (if you know what I mean)

We thought we would recieve Caroles liver scan results on Friday but it looks like Monday 'may' be the results day now.
Caroles booked in to have her arm pinned on Tuesday at the Royal Oldham hospital in Manchester, which is only a 15 minute drive from our house. Though it takes half an hour to find a parking space!

Will keep you all informed of any progress.

p.s. We are all handling it well at the moment. Forums like this help :)

Paul

However it sounds like you have the situation under control. Thanks for letting us know what's happening: we know now what day to cross our fingers again. xxxx Penny

Paul here

Yep, they can't make there minds up??? So, Carole will be having her arm pinned as planned tomorrow, with radiotherapy planned some time soon, and only then will they consider more scans. Maybe up to 6 weeks away.
Ah well.

What a crazy outcome - you must both be feeling extra stressed by this. Does this mean that they didn't see anything at the moment - or that they can't agree on what they can see? Honestly! Well, hopefully it indiates nothing major, at least. I really hope that Carole's arm-pinning goes well tomorrow, with the minimum of discomfort (euphemisim there as I don't know what it involves but sounds painful!), and you get a chance to recover before any possible Radio. Good luck and lots of love xxx Penny (PS Finished the ironing yet?)

'Does this mean that they didn't see anything at the moment - or that they can't agree on what they can see?'

Both, if that makes any sense? They couldn't see anything on the latest scan, and couldn't agree on the previous scan????

Ironing is done now. Thanks for the offer lol

Paul

Hi everyone

Just thought I'd let you know what's happening next. I have an appointment with the Orthopaedic Dept on Tuesday, hopefully to remove the staples from my arm. They are getting very itchy so I might end up pulling them out with my teeth if I have to keep them in much longer!!

But in true 'sods law' style Christie's have arranged an appointment with me for 55 mins later, even with a Helicopter I couldn't make it!! Anyway, my Oncologist rang Paul on Friday, whilst I was still at Center Parcs, to say that I will be having 4 sessions of radiotherapy and they will probably change me to a different hormone tablet rather than Tamoxifen.

As far as the liver situation goes, I have to have a MR scan (hate it, hate it, hate it!!!) if that doesn't show anything up then they will have to keep checking it every couple of months. Great!! Apparently they can't do a biopsy cause whatever is on my liver is too small to see. This waiting game is horrendous isn't it??!

Those staples sound like murder, but I hope once removed your arm will feel better. Hm, hospitals never seem to be able to liaise about patients do they? At first I had two involved, and they always wanted the results at one of something that hadn't yet happened at the other. You'd think with all these computers...

Feel really sorry for you still hanging on the thread of your liver investigation. Is it an MRI scan you hate? Are you a bit claustrophobic? I hope you can take some music with you to calm your nerves. It is like being the filling in a sausage roll, isn't it! I had to have a grid strapped to my torso front and made the girl laugh saying I felt like I was in mountain rescue. Peversely, inside the MRI was the first time I'd felt safe and calm in weeks - clearly a back-to-the-womb thing!

Glad you had a few days at Centre Parcs. Did little boy go with you? I hope you had managed to enjoy yourself Carole. With very very best wishes for the MRI and for your de-stapling. xxx Penny

Hi Penny

Thanks for your kind words and support. I think you're right I will feel a bit better when the staples are out, the arm is still very stiff and sore. Paul's not happy at having to do the domestic stuff (how much can one man moan about having to do the hoovering!!????)

The MR Scan is horrible, it was the staying still that I found very hard and of course the confined space. But needs must so I'll just get on with it.... I'd heard you could take music in so I'll take my ipod with me cause the loud banging and clanging is horrid isn't it?

I took Sam with me to Center Parcs, but we couldn't do a great deal. On the first day we spent a couple of hours in the pool and he seemed to really enjoy it - next day, no chance! as soon as we got in he was mithering to get out, the weather was terrible until Thursday and my friends had loads of stuff planned with their children so I felt a bit like a spare part. They all had bikes too, of course I couldn't ride and even if I could I wouldn't be able to have Sam on the back so we walked everywhere and Sam was moaning about a 'stitch in his tummy' all the time, so not the best week. Next time I'll take my beloved with me and I know we'll have a better time.

Love Carole

xxxx

Well carole,

Heres to horrid MRI scans that keep telling you that all is good. Will keep my fingers and toes crossed for you, so will april.

mind you i'd put it on a bit and keep him hoovering if i were you, make the most of it.

Lol and hugs to youz all,

Debbie and Arpil xxxxxxxxx

Hi All

Well, 5 days into my radiotherapy and all's well! 3 more to go.

I saw my Oncologist last week (the gorgeously glamorous one) she was very pragmatic, as always, she explained what I should expect in relation to treatment,etc. I'm still awaiting the MR scan but if that doesn't identify what's going on in the old liver then they will continue to check me out every couple of months, which in one respect is good - to have regular check ups, on the other hand I'd be much happier if they found nothing at all!!

I've been put on a bone strengthening tablet and my Tamoxifen has been changed for Femara so, fingers crossed, my condition will be controlled successfully. Having said that, when I saw the Orthopaedic Consultant last week to get the arm checked and the staples out, I told him about the medication and his response was to state that the tablets are a load of rubbish and if they worked he'd be out of a job!!! I think I'll keep my optimism going!

Whilst its a bit of a treck to the Christie everyday at the moment, at least I'm able to drive myself now, which is a good job 'cause for the last few sessions the machine has been backed up and I've been getting seen about 45 mins late, not too bad me hanging around but I wouldn't want Paul or my dad to have to wait with me.

Regards
Carole
xxxx

You sound a very capable lady doing all this driving about already. I think docs are a sometimes a bit precious about their specialisms and tend to denigrate each other's methodology. My oncologist used to laugh out loud at the things I used to trot in with that my GP had told me. On the other hand, my GP thought their prognosis was rubbish, and he has been proved right. Keep taking the pills if they make you feel better! It's your arm not his.

Yes, treatment means a lot of hanging around, doesn't it. I broke the machine once myself, as it was the oldest one and couldn't cope with the funny dog-bone shape of my template. Another time a rather large lady jammed the raising mechanism. They also lost my file a couple of times. The only good side-effect of all this waiting is meeting some lovely people: hope you are too, Carole.

Looking forward to meeting you. Take care xxxx Penny

Hi Carole,

Just a foot note to say best wishes for the mri scan. Fingers crossed they find that it all looks good on the inside.

Look forward to meeting you as well,

LOL and Hugs,

Debbie and April xxxx

I'm really grateful to get your responses girls, it makes all this stuff a little bit easier, knowing that others are (or have been) going through the same. You're right Penny I have met some nice people, also a lot of elderly people - and I know its selfish but I can't help thinking I wish I was their age before the Big C got me. On the other hand I also wish they weren't suffering with it either! At least at my young age (!!) I think I can deal with it a bit easier.

My arm is doing remarkably well, I've not had to take painkillers for almost a week, and yesterday I did about 3 hours ironing (don't tell Paul - mind you I think he thinks an 'Ironing Fairy' visits us as he puts his dirty stuff in the washing basket and 'hey presto' its returned to his wardrobe a few days later all nice and clean!!) The Ortho guy did tell me to try to use my arm as normal so that's my excuse!

I was talking to a really good friend of mine the other day. We worked together until I was redundant, she took another position in the Co. She had cancer in her kidney and was treated last year, it was all very horrible for her, apparently the kind of cancer she had is normally only found in men over 60 who smoke!! She's struggling to remain positive because she still has to have regular check ups and hearing about me has given her a bit of a setback. Anyway, I have tried to encourage her to join the forum I told her about the fantastic, supportive people on here. I hope she will, but I think she's a bit scared about looking into her type of cancer in case there is negative stuff. I told her that Cancerbackup generally give you the facts and don't concentrate on the 'doom and gloom' so I hope she'll give it a try.

Anyway, I'm really looking forward to seeing you at the bbq next week, lets hope the weather stays good.

Lots of love
Carole
xxxx

I wanted to share this news with you.

A couple of days ago Paul's friend, Jason, arrived at our house with a big bunch of flowers (knowing Jason as I do, I wouldn't have thought he'd have known one end of a flower from another!) Anyway, he proceeded to make an announcement.

Before I go further I'll set the background to this..... I don't know if you know but Paul is a bit of a 'petrol head' he has two sports cars - his pride and joy being a Lotus Elan. For many years he has been a member of LEC - a Lotus Elan forum, so too has Jason as he also has a Lotus Elan. The members are based all over the globe and are commited to preserving these rare cars - they meet regularly and share/sell car parts, and share experiences of upgrading or repairing the cars, etc. I've never been that involved as the car is only a two seater and the passenger seat has a child seat on it (!!!)

Anyway, to carry on with the story...... Jason announced that the members, having become aware of my plight, wanted to do something to show their support, and to hopefully raise some funds for a good cause (ie. Cancer Research) so they set up a page on 'Just Giving' and, to date, have raised the fantastic sum of £1,372. Its not only the LEC members and their partners (both in the UK and across all continents) but strangers too have contributed. Both Paul and I are overwhelmed by their generosity of money and spirit.

If you want a peek at the page have a click on the following link http://www.justgiving.com/lec

I'm sure you'll agree with us that this is a phenomenal gesture from people who, whilst know Paul (that should have put them off then!!), don't know me. We will be forever grateful.

Love and best wishes
Carole
xxxxx

what a lovely gesture x its so nice when people do things like that, it helps to restore our faith in human nature i think x anyway, see you have joined the 'aromataise inhibitor' group, i take arimidex which is part of the same family as femera and aromisin, i think what your onc said is very wrong and totally unprofessional, these are good drugs for us to have as a preventative measure and ok, the side effects can be a bit horrid at times but better than the alternative i think. are paul and you coming to buxton in the 'mean machine'? we shall all be queing up to go for a ride in it, mind you, not sure i could get in or out of a sports car nowadays!
love to you both and little Sam
Alisonxxxx

Hiya Ali,
Just a quick point - It was the Orthopaedic Consultant that Carole saw that dismissed the medication, not her Oncologist.
Her 'Glamorous' oncologist couldn't do anything wrong in my eyes ;)
God I'm a tart!

Yes I'll take you for a spin Alison :)

Well, its only 8 WEEKS after I was told I needed an MR scan on my liver and, at last, I have an appointment next Tuesday (15th) at Christies. Now its almost here I don't want it!! (Well, I do and I don't if you see what I mean). I won't get the results for a couple of weeks but you can guarantee I'll either get an appt. for when we're away on holiday (end of July) or I'll get the results the day before we go, and with my luck it'll be bad news!! However, ever the optimist - if it is bad news I might as well drink copious amounts of alcohol on holiday as it can't damage my liver more can it!?!?!?!

On a less flippant note we all know the waiting is the worst thing, so at 1pm next Tuesday I need you all to use the power of positive thinking to make sure the scan finds me clear, then the waiting will have been worth while!!

Bless you all
Love Carole
xxxx

You've certainly had an incredibly long wait, and yes, of course we shall all be thinking about you and sending our love, next Tuesday especially. I know exactly what you mean about feeling ambivalent about having the test, as having waited so long one sort of has a slow puncture about these things, and feels "Oh no, I've got to go back into the snake pit". Yes, that'd be my sort of luck as well for the timing of the results. Maybe Paul had better censor the mail until you go away? All my love, all my very best wishes xxx Penny

I would just like to reiterate Penny's sentiments and wish you all the very best for Tuesday. Gary and I will be thinking of you. Love Jayne x

Good Luck Carole,
we will be thinking of you
Steffy & Tom x

I found your thread at last! Just to say I have everything crossed for your scan and results - I have so many things crossed for you I keep falling over! We will send our vibes over the airwaves by the truck load! Best wishes Jools x x x x

Only a day and a bit to go .... Will be thinking of you on Tuesday and hope it all goes really well. Love, Kate xxx

Wishing you the best, and i hope your
news is good, i will be keeping fingers
legs, eyes crossed on the 15july,
love n hugs to you all. xxxxxxxx linda. x

Good Luck Carole hope all goes well, will be thinking of you tomorrow, you will be just fine xxxx

Dearest Carole,

I hope the power of our crossed legs toes and fingers, does'nt cause your scan machine blow a fuse. Because there will be so much positive energy whizzzzing your way tomorrow.
VERY VERY best wishes, you will be on our minds all day tomorrow especially at 1pm.

lol and (((((((((((((hugs))))))))))))

Debbie and April xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

...... They really do help (as we all know!)

I spoke to my Onc's secretary last week, they obviously don't want to give me the results until I return from hols, so I'm keeping my 'routine' appointment with my Doc on 18 August when I will get the results.

I know it seems a long time off but at the end of the day, whatever the result, it's unlikely they will do anything different regarding my treatment so I'm not going to get too worked up at this stage.

I shall take a couple of 'rocky' CD's with me tomorrow to while away the time in the scan and I will keep positive thoughts, and take comfort from the fact that you are all routing for me.

Love and best wishes
Carole
xxxx

Hi Carole,

I know we've never 'spoken' in the chat room but just wanted to say good luck tomorrow and I have my fingers crossed for you.

Jennie xx

It may be that they too have staff away on hol and not enough people around to get results through before your own holiday, so try to think of that whilst you are away and block all bad thoughts. I really wish you the very best for tomorrow. Lots of hugs and love xxx Penny

PS - this nettle tea I am drinking is definitely an acquired taste! How's your Healthy Eating coming along?

Hi girls

I'm soooooo glad that's over. it wasn't pleasant, but I think because I've been through it before I knew what to expect and it didn't seem quite as bad (apart from having to breath in and then out and hold my breath (of which I had none, cause I'd breathed out!) for up to 20 seconds). Although i felt a little dizzy it was manageable. Plus, it only lasted about 35 mins this time and I got in early (now that's a first isn't it?!) so I was done and dusted for 1.30pm.

Anyway, I did a kind of mantra whilst the buzzing and banging (not me the machine!) was going on. I did an internal chant "my liver is cancer free, my liver is cancer free".... and so on, I don't normally believe in this kind of stuff but, hey, I'll try anything these days.

As for the healthy eating Penny, not doing too bad ..... until tea time when i had a pork steak, mash and peas!! Oh well, I think I deserved it after today, and I will have some fresh berries and yoghurt when I get home from the walk I am now going on with Sammy!!!

By the way Jennie, lovely to hear from you and i will join the chat soon!!

Love to you all
Carole
xxxxxx

Well done - I have a vision of you talking through your scan and the scan people thinking 'this ones talking to herself' LOL I hope it works anyway. Now go have fun and forget about it! All the best Carole Jools x

Real pleased it is behind you hun, go off on your holiday and enjoy the pampering that paul is gonna lavish on you. If he dont he will have us to deal with yet again!!

Lots of love and hugs to you all,

Debbie and Aprilxxxxxxxxxxxxxxxxxxxxxxxxxx

Hope you're having a lovely time on your hols - look forward to the pics on FB! Can I borrow your mantra idea for my next scan? Lots of love xxxx Penny

Hi Penny

Thanks for the good wishes, we had a lovely time, it was very hot. Mind you the pool was fantastic for cooling us down and the children loved it(went with our friends who have FOUR (must be mad!!)

We took loads of photos so I'll put them on FB over the next few days.

I'm on countdown now for my test results (liver scan) and will find out next Monday so I shall be using my mantra again before I go (lol!)

Love Carole
xxxxxx

I am so pleased you had a nice time - believe me you missed nothing here weather wise! I am looking forward to seeing the photos too. Do you have a suntan - I will be jealous. I went to Alton Towers while you were away and needed a snorkle and flippers the first day! I will be crossing my fingers toes and everything else for your results next week (day before my eldest turns 15) and please dont hesitate to give me a bell at any point. Looking forward to meeting you and P at the Fiesta. Love Jools x

Hi Carole, fingers crossed for monday and hoping that you get good test results. I borrowed your mantra on Thursday when I went for my scan, (I hope you dont mind).

Heleng xx

Just doing a 'hari chrishna' mantra!! (lol)

Seriously, Helen, please feel free, we all have to do anything we can to beat this bloomin' disease. Maybe if all of us on WN do a mantra at the same time (midnight tomorrow??) like that message on motorway bridges (can't remember what it is - something like garanga or something) then we might all beat it!!!!!!!!!!!!

I'll update you all on Monday when we have the results.

Love Carole
xxxxxx

Always wondered what that was about! Yes, we should definitely pool resources on the astral plane, and Monday seems to be a (n un)popular day for it as I too am entering the portals of a hospital (bloods and CT, joy-oh-joy). Your FB photo albums were lovely, and, as Jools so rightly says, you missed nothing here. Whilst Jools was snorkelling at Alton Towers, we were getting dunked camping and walking 9 miles whilst gradually discovering that nothing I was wearing was waterproof....
Om mani padme hum..Om mani padme hum... Only today I have had a go with a friend's Tibetan prayer wheel, and it was rather energising.xxx Penny

hi carole
im new to this site and just thought i would send you my best wishes and say i will be thinking of you on monday...heres hoping its good news..
take care
mandie xx

How kind of you Mandie, I hope you are getting as much support from this site as I do (and everyone else too!!)

It does help when you are going through treatment/scans etc. to get the good wishes from the girls and guys on here. I'm so glad I found this forum.

Love Carole
xxxxxx