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PET/CT scan - nervous

55 REPLIES 55
Angelfalls
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Re: PET/CT scan - nervous

Great news to start the weekend with! I'm so happy for you, Alison, and hope you're celebrating!!! Let us know what the onc says on Tuesday. Have a fab weekend xx

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Re: PET/CT scan - nervous

well ladies i come with good news
scans clear yay
i was told today that when i had my op they removed the intramammory node and got it biopsied
yes it had breast cancer in it this is the reason for the full body scan
next step now is to see the oncologist on tue to discuss some treatment
they dont think more chemo will be recommended but different hormone blockers and overies out
will know more next week
thanks for your support expecially angelfalls xxxxxx

Angelfalls
Member

Re: PET/CT scan - nervous

You'd be surprised the places I get into! Lol!!!
Hope you're ok xx

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Re: PET/CT scan - nervous

hi angel
didnt realize you was on here aswell lol
must be a good sign
will let you know how i get on
only 1hr and 45 mins wait left eeekkkkkk

Angelfalls
Member

Re: PET/CT scan - nervous

Good luck for tomorrow, Alison. Fingers and everything else crossed for a clear scan. Angelfalls xx

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Re: PET/CT scan - nervous

hi ladies
yes i am now on the waiting waggon and i hate it
had my diep reconstruction 5th jan
2 weeks later get a call they found my intramammary node was enlarged and there not happy with it so back to the scan room for pelvis - abdo - chest scan on thur 2nd then results friday

i am 2yrs out and thought i was putting all this behind me
just praying for clean scan

alison x

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Re: PET/CT scan - nervous

bumping up again ladys xx anyone out there with results ?

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Re: PET/CT scan - nervous

bumpingxx

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Re: PET/CT scan - nervous

HI ladys had results yesterday and there 90 percent shaw its not secondarys as scan the same as last time and said because so small the chemo would of zapped it , but they now say it could of been an infection as still there witch is such good news i cant belive it am so happy so onc said willre-scan me when i finish fec in march to make sure all is well still .
but for the moment am taking my hole family out for dinner tonight ( sod the expence dont care they have been so suportive for me so is a thankyou i no my treatment isnt finished and have a long way to go yet ,also the healing as had both breasts removed and groshung line in witch keeps playing up one line blocked and the other line had to be blasted as they couldnt get bloods from it for my chemo today so feel i need to let of some steam with my family .
Thankyou to all you lovely ladys and the ones going for scans i no what your going through love to you all xxxxxxxx

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Re: PET/CT scan - nervous

bumping xx

naomifel
Member

Re: PET/CT scan - nervous

Oh, Josie, I really feel for you - chemotherapy is enough to cope with in itself without the added anxiety of a scan and the results never mind just the need to go to the hospital in the first place.

Be easy on yourself, and if you need to cry then do! I came home after work today and felt absolutely shattered but run myself a bath, lit a candle and just had 15 minutes to myself - and somehow it has made all the difference.

Please come back and let us know how you get on but in the meantime spoil yourself as much as you are able.

xx

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Re: PET/CT scan - nervous

Hi ladys just back from c.t.scan wich i hate , im fine but as soon as i have to go to that hospital i feel sick and get myself all worked up ,hate it.
And now im back in the waiting game for results just feel so sad ,had realy sad day , sorry realy feeling sorry for myself and there are so many other ladys going through so much , but dont want to upset my family xx

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Re: PET/CT scan - nervous

Libralady,
That is fab news. I just popped back to see how you were doing. Sooooooo pleased. Perhaps Christmas will be a more enjoyable event now you have that news.
Warm festive wishes to you.
xx

naomifel
Member

Re: PET/CT scan - nervous

Oh libralady, that is such good news-I am so pleased for you! I hope the chemo goes smoothly over the next few weeks and, in the meantime, you get to relax a little over Christmas.

I've got another CT scan booked in 3 months time, with the hope that the nodes have reduced in size. I've been found to have some thinning of the bones so have been prescribed calcium and vitamin D, but have decided not to start taking them until the new year-I intend to just try and 'forget' this latest episode over the Xmas break!

Have an enjoyable break ladies!

Naomi/Naz

Libralady
Member

Re: PET/CT scan - nervous

just popping in to say my ct scan results were clear . thank God

They did say there was a small spot in one of my lungs but they didnt believe it to be of a concern and seemed more like a scar but they would look at it again when i have my rads planning scan.

Thanks for your support girls, really appreciated

xxx

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Re: PET/CT scan - nervous

Thinking of you libralady and sending love xx

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Re: PET/CT scan - nervous

Hi,

Just wanted to send special thoughts your way, and hoping you get positive results.

Dotty2 xx

Libralady
Member

Re: PET/CT scan - nervous

Hi Ladies

Josie - I noted you asked on The Nov thread about my CT scan results - not had them yet - get them tomorrow when I see the Onc just before my 3rd FEC chemo.

Im a bit upset actually that ive had the scan on 6th Dec and Ive had to wait until 21st Dec to get the results....WHY???...i already have a swollen right lymph node in my groin which is what triggered my panic call to my onc and why he ordered the scan... so if I do have secondaries I would have rather known a couple of weeks ago.

If tomorrow they tell me I do have mets elsewhere, I then have to absorb that, then go straight into the unit for my normal chemo and sit there in front of everyone dealing with the news.

Why couldnt the Onc have called me back in a few days afterwards to discuss the results. Im thinking that he wont even look at the results until tomorrow morning 10 mins before my standard pre chemo appointment with him and then announce "Oh by the way...you have 12 months to live...better get your s*%t sorted love"

They dont realise what this waiting does. make it worse its christmas week....it would be terrible to get bad news this week.

I have sat here for how many days feeling aches, pains, lumps and bumps all over me .....sending me bonkers. But at least tomorrow I will know what the situation is and can stop worry about whether I have and worry about the next step. Its not an easy road is it.

Im due on tomorrow as well, my periods havent stopped as yet - my boobs are really sore so im assuming I will come on. In fact, my onc better be careful.....PMT rage may result! loool

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Re: PET/CT scan - nervous

bumping xx

naomifel
Member

Re: PET/CT scan - nervous

You're right, Josie, it is s@&t! I'm feeling a bit sorry for myself this evening, at the same time as feeling incredibly angry-something someone has said (to my OH) has just left me reeling-some people need to count their blessings more often. Enough of me. You'll get through the chemo, even if (as you will) you feel tired, and fed up that you're having to go through this at all. Every one of my chemo sessions was delayed because of low blood counts-I remember it being really upsetting not only because it meant that it prolonged the overall length of the course but it also meant I had to have another blood test a week or so later when my veins were becoming increasingly poor. BUT you will get through this course of treatment-hang on in there.

Sending you all my very best wishes.
x

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Re: PET/CT scan - nervous

HIladys was up hospital yesterday 9pm bloods , 10.30 oncologist , and then finaly 2nd chemo witch i was glad to have but was short lived as have been feeling rubbish .
HI naz so glad to here from you, but realy think this is a s--t disease that i feel we are waiting all the time for.
before i got breast cancer i cant remember even going to the DR with a cold so am so sad as i have been in and out of hospital twice a week since DX in july ,sorry just feel a bit sad that were here waiting waiting all the time it just consumes OUR LIVES I HATE IT XXjosie

21210
Member

Re: PET/CT scan - nervous

Jules38, i am so very happy for you, brilliant news, i had everything crossed for you.

Josie, i am still in the waiting room with you, my repeat Ct scan has come through for the 17th Jan so am praying tiny nodule has gone, i will cross everything for both of us.

Naomi, brilliant about the clear scans & hope that the other things turn out to be nothing, so will cross everything for you too.

Much love to you all& anyone else waiting for results.

Love (a very everything crossed)

Sarah.xxxx

3network3
Member

Re: PET/CT scan - nervous

Oh Naomi, I can just feel your frustration, it knocks your confidence in them, well it would knock mine. So annoying.

Love from Christine xx

naomifel
Member

Re: PET/CT scan - nervous

Thank you Josie, for asking - I was hoping to report back when the results were a little more conclusive. I had the scan last Thursday and discussed the results with the oncologist on Monday, yesterday. The good news is that the bones were clear - the bone scan had shown a single lesion - and that the lungs and the liver were also clear. The not so good news is that they found enlarged lymph nodes in my underarm, by my collarbone and near my left lung. The scan also showed some very slightly inflamed lymph nodes in/or near my stomach.

I was, therefore, referred to the rapid diagnostic assessment centre (RDAC) today for an ultrasound and a biopsy, and another appointment with the oncologist was made to discuss the results next Monday.

Of course, nothing is straightforward and the radiologist couldn't find any lymph nodes to biopsy so I'm back to square one again, albeit about my lymph nodes rather the bones.

I'm slightly annoyed because the radiologist appeared quite dismissive. I know they are very busy but he didn't seem to be aware of why I had been referred to him in the first place, or of the context, i.e. he was not aware that I'd had a mastectomy, level 3 axillary node clearance and a reconstruction (I'm surprised he could not even tell just by looking) or that I'd recently had a recurrence.

My OH thinks I should make a complaint - I'm not going to - but what I don't understand is why I was referred for an ultrasound/biopsy if an ultrasound was never going to ever be able to see the nodes anyway - from what the radiologist said, I believe they are sub-pectoral.

Either the oncologist should not have referred me to the RDAC for a scan/biopsy or the radiologist should have attempted alternative measures to find the inflammation, perhaps just by referring to the results of the PET/CT scan.

I know we all have to live with uncertainty but having believed that the nodes could be biopsied I am slightly upset that they haven't. I'm not convinced it is worth going to the appointment on Monday, because there's not going to be any results to discuss.

I'm going to call the oncologist's secretary/breast care nurse for some advice but if anyone has had any experience of this themselves it would be really good to hear from you.

Yours frustrated

Naomi (my nickname is Naz but I see that there is another woman posting on this site with this username).

P.S. And to top it all, today is the 4 year anniversary of my original diagnosis, 3 years after chemo finished and I'm very fed up!

P.P.S. And another thing - I have a DEXA scan tomorrow, which is not worrying me just time consuming.

Enough!

Thank you for listening to me rant.

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Re: PET/CT scan - nervous

Hi Naomifel
Realy hope your doing ok , was wondering if you have had your results or when your going ? Am thinking of you and no what your going through would be lovely to here how your doing as you started this thread xx

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Re: PET/CT scan - nervous

Thanks Josie1. I feel for you deeply, I had a couple of delays on my chemo too, its very common and best to be on the safe side. It seems diagnosis is sometimes fraught with options which makes the whole process even more difficult. Hang on in there and refer to your mantra (think it was yours) about not being able to change the past or predict the future. I always try to remember that things are rarely as bad as our minds allow us to think as, our minds can be our own worse enemy. Breathing and relaxation plus a bit of crappy TV are often helpful strategies!
Take care.
I will keep check on how things go.
Whatever the journey, we have our friends here to helps along the way.
jx

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Re: PET/CT scan - nervous

oh jules38 im so pleased for you ,you must be over the moon as waiting is so scary hope after xmas i get good results as not having very good time at the minute as blood platelets were to low to have
2nd chemo so sad today ,but you give me hope that they somtimes get dx wrong xx

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Re: PET/CT scan - nervous

Well all you wonderful ladies I wanted to let you know that I have fantastic news. Much to my utter shock, my chest is clear on the latest CT. Seems the nodules were the result of an infection and I am so so relieved and can't believe it still. I feel truely blessed. I think having survived BC this far I now realise it is something that you are always looking over your shoulder for. I guess it's taken this to wake me up and realise how lucky I am to be here. I wish for all of you awaiting similar results that you can manage the testing time ahead, it is a challenge greater than most ever face. I guess we all just have to learn to live our lives through these difficulties. I am now forever determind to be grateful of the good times.
Warm hugs and lots of love and thanks for this forum of support from the sisterhood!
Julia
xx

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Re: PET/CT scan - nervous

Sending positive thoughts to all you lovely ladies awaiting results.

Keeping everything crossed for all of you, and remembers it's okay to scream and shout whenever you feel like it. Please let us know how it all goes.

Dotty 2xx

herbidacious1
Member

Re: PET/CT scan - nervous

Get results of my bone and ct scans on 15 th too, I guess Christmas cheer will depend on the outcome. Am dreading it but I know whatever happens we'll get thru somehow,
Herbi x

ChoccieMuffin
Member

Re: PET/CT scan - nervous

Bone scan booked for 15th, in response to persistent backache (3 weeks or more but nothing different in what I've been doing) on top of one-year anniversary anxieties. Results should be available the following week, so JUST before Christmas. Diagnosed a year ago tomorrow. What a year. I haven't even mentioned the scan to my family because while I'm worried on the one hand, on the other I'm telling myself off for being a hypochondriac.

I really hope I AM just being a hypochondriac...

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Re: PET/CT scan - nervous

Best of luck to all you ladies going through the stress of scan results and fear of recurrence/ secondaries, especially right on top of christmas 😞 Here's hoping all your scans are clear and you dont have to wait too long for results.
Tina x

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Re: PET/CT scan - nervous

BIG hugs to the ladys waiting for scans its such a worry ,i too have to have a scan after 3xfec wich will b after xmas and i feel sick just thinking about it but have a saying on my fridge that i look at every day wich says (FORGET THE PAST YOU CANT CHANGE IT , FORGET THE FUTURE YOU CANT PREDICT IT) you go ladys xx

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Re: PET/CT scan - nervous

Hi ladys well had my first outing with (erin) thats my wigs name and it was ok as i put a hat on with her she is a short bob and my new best friend but can only wear her for about 5 hours as it makes my head itch .
Hope everyone is ok ? xx

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Re: PET/CT scan - nervous

Hi Ladies,
Yes scan later on today and not sure about results but I will be hot on their heels! Am trying to get through the days but it is torture. My anxiety levels are through the roof and despite trying to carry on at work, I find myself lurching ahead in my mind to dark places. Am also now booked in for bone scan which was mentioned but I only thought would happen if my CT is not good, which makes me think its a forgone conclusion by the Oncs that it is lung mets. Sorry to be so negative, you girls are all so inspirational sounding at such a tough time. Well bloody done! Wishing good vibes and warm hugs as always.
Perhaps I should focus on planning my 40th!
Jx

Libralady
Member

Re: PET/CT scan - nervous

Hiya ladies

Had my CT scan today - results in about a week I guess, im so bricking it.

They were going to scan after chemo but I need to know - the stress of the not knowing is mentally unhealthy as I think about it all hours of day or night and its become too much of a main focus.

naomifel
Member

Re: PET/CT scan - nervous

Hiya

how do you feel, Josie1, now that your hair/head has been shaved? I locked myself away in the bathroom when I went through chemo and shaved my head myself. I cried my eyes out while I was doing it but felt relieved almost immediately afterwards. My OH described the event as me throwing down the gauntlet, although I don't think I saw it that way then and I don't think I see it that way now either.

Jules38, its your scan tomorrow is it not? Let us know how you get on. I look forward to hearing how you intend to celebrate your 40th. I turned 41 this year (4 years post diagnosis) and am looking forward, oddly, to my 50th!

021210, I read someone refer to the anxiety over scans as 'scanxiety' recently! It is so true - I have my PET/CT scan on Thursday and a consultation with the onc on the following Monday, where I hope we will discuss the results, and, as much as I am doing my best to distract myself (usually involving shopping), I am quite nervous about it all.

Libralady, how are you getting on? Have you had your CT scan yet? When do you expect to get your results.

Fingers crossed for all of us over the next few weeks and months.

Naz

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Re: PET/CT scan - nervous

Hi ladys thankyou for your lovely posts , my daughter shaved my head this morning as am going through chemo.
but i have had good SE so not complaining to much just hope its working , fingers crossed for us all on the scan front xx bev

21210
Member

Re: PET/CT scan - nervous

Hi josie,

I only had the chest ct scan as they were looking for a clot that i got from my picc line, i was dx last December aged 40yrs with a 9mm grade 3 invasive tumour, i had a WLE/SNB on Xmas Eve 😞 & they got clear margins, no lymph node involvement & no vascular invasion.

I started 6 x fec in Feb ( my choice as Onc felt chemo may be over treating it) Rads X 25 & then Tamoxifen for 2 months but had to come off it because of clot so had a month with nothing then was put on Zoladex & letrazole which i am still on.

They rang me to tell me that there was no sign of clot on lungs & to be honest it was only when i asked if everything else looked ok that she mentioned this nodule which she has said they will re scan in 3 months, when i said that i was now very scared she told me not to be as they get these results all the time as Ct's are super sensitive & it is possibly scarring from a chest infection or may not even be there when they go back but have to be honest am still petrified, feel like i am walking through life with a black cloud over my head 😞 am dreading re scan.

Sarah.xx

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Re: PET/CT scan - nervous

Thanks Josie, well, I had a chest infection which cleared up without treatment about 3 weeks before I had my first scan. So I can only hope that is the cause. This is why they have allowed a month before the next scan to allow time for any residue of the infection to clear. I don't have any other symptoms although the anxiety makes my chest tight at times. All this worry is cancer inducing in itself!!
Anyhow, we are all in this rocky boat and as you say waiting is so tough.
Hope you have a good day today.

Hugs

xx

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Re: PET/CT scan - nervous

Hi jules its my first lot of chemo .
But onc put me on tamoxifen for 10 days as thought it was on my lung now saying might not be .
Was wondering if you have had any symtoms etc .. cough , breathlessness or anything that makes you think the chemo hasnt worked hunny as it most likely has.so try not to worry to much i no im not the best person but were all going through this together big hugs to you and everyone on this forum as i think the not knowing is
such a very very bad time as feel stuck in lymbo xxx

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Re: PET/CT scan - nervous

Hi Josie and all,
Thanks for the supportive words, it is reasurring although I don't wish for anyone to go through this situation. Josie is this your second lot of chemo? What prior treatment have you had? and when was it? Mine was so recent, finised chemo(FECx6) and 3wks Rads end of Aug. I can only assume it may not have worked for me if this turns out to be mets.
I know how you feel about going into that clinic room for results. It is all like one bad dream. Lets hope there is a good outcome for us all.
xx

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Re: PET/CT scan - nervous

Jules38 good luck on the 7th as no what your going through waiting ,part of me wants to no but part of me realy doesnt want bad results just upsets me so much just dont no how my family will get me in that room for my results so sared xx

021210 do they think it could be mets or have they said there not sure 50/50 ?? Also are you having chemo ?? And how old are you ??
Sorry about the questions but its nice to no xx

21210
Member

Re: PET/CT scan - nervous

Hi All,

am too waiting for a re scan in January after 1 small teeny nodule was seen on my lung in October, trying hard not to think about it & praying its just scarring.

Let us know how you get on Jules, will cross everything for you on the 9th.

Sarah.xxx

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Re: PET/CT scan - nervous

Josie/Libralady,
I am 39. Hoping be able to celebrate the big 40 next year! Anyway, I too am forever researching the subject and am filled with thoughts about the future and what may lie ahead. I guess still not knowing is worse somehow, so I hope that once I have the scan (now on the 7th) and then the results I may feel better either way. I seem to be wandering about is a daze but trying to keep it together for my 4 year old and partner. Its the toughest thing I have ever faced. My Onc tried to reassure me that even if it is mets then its early and very treatable although as we know not cureable. It still then feels like a limited lifespan filled with ongoing treatment. Difficult to be positive and I always used to be glass half full!!
I hate the fact that I look around me and feel so envious of everyone else who I imagine don't have these burdens on them but perhaps they do and worse. Its a very fraught and negative mindset and untypical for me which I really dislike. Hope you guys are finding some reserves to draw on.
take care
Warm hugs
Julia xx

Libralady
Member

Re: PET/CT scan - nervous

I have my CT scan coming up next week too. Im so nervous about the whole thing but I asked for it to be brought forward.

They were due to scan me after I finish chemo (currently 2 of 😎 but my groin lymph nodes have swollen and Im worried about mets or possibly of ovarian involvement.

Such stress - all I do is think about it and research it and its making me have some awful thoughts about my future which Im beginning to lose hope in.

This is no easy road.

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Re: PET/CT scan - nervous

thanks jules38 how old are you im 47 ? and good luck for the 9th please come back and let me no how you got on xx

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Re: PET/CT scan - nervous

Hi Josie,
Hope today is somehow a better day. Its all so confusing I know. Its difficult not to feel angry too, that we have to go through this. I will have a repeat CT on the 9th Dec to see if things have changed. All I can do is hope that it was due to a chest infection and that now things look better on the scan. Can't help but fear the worst after the last year. And just when I thought I was back on my feet. I only finished my FEC/Rads in late August! Also on Tamoxifen since.

Take a bit of time to think through your options. You will come to the right decision.
Meanwhile I admit due to my head being all over the place too, I am now on betablockers to get me through the next week. I used to be so strong! This is very wearing.
Still, we have somehow been chosen to go through it along with so many others and I guess we just have to grab it by the balls and get on.
Thinking of you.
Julia
x

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Re: PET/CT scan - nervous

so sorry jules38 not haveing good day head all over the placexx

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Re: PET/CT scan - nervous

Hi jules68 just read your post am im in same place as you had c.t scan and they said i had lung mets then 10 days later got phone call from onc saying stop taking tamoxifen as we not sure its lung mets or infection, so new plan is 6XFEC with a veiw to re-scan me after 3.
Are you haveing chemo ? how and when will you no your results ?
I have to wait till after xmas and am so scared do i or dont i this is my life xx