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PET/CT scan - nervous
Hi
just looking for some assurance. Currently being treated for a local recurrence (I think) in my reconstruction (following mastectomy, chemo & tamoxifen). Just moved from Coventry university hospital to royal marsden. My chest and liver X-ray/ultrascan were both clear apparently but my bone scan showed a single lesion on one of my ribs. I've just today received an appointment for a PET/CT scan and am now really worried that not only will it detect spread to my bones but also to my lungs and/or liver.
I think I've managed things so much better this time but having just got the letters I've just broken down in tears. The side effects of the radiotherapy are prob not helping-skin very sore that I can't stand up straight or lie down flat easily and not sleeping-but is this really only a precaution?
I can understand now when consultants chose not to recommend scans normally given the anxiety they cause.
Enough of me-just have to get on with it I suppose...
Naz
P.s. feeling very sorry for myself, my 30s were hijacked, and now my 40s appear to being sabotaged-angry!!!!
Hi Naomifel
It sounds like you're having a pretty tough time at the moment. I’m sure the users of this site will be along to support you soon.
In the meantime maybe you would like to talk to a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
Best wishes Sam, BCC Facilitator
Thank you very much, Sam - I will do that. It just got on top of me yesterday. Naz
Sorry can't offer any advice as I haven't experienced this, but it's okay to cry and be angry about this b****y disease. I'm sure there'll be ladies along soon who've been where you are now, and be able to give you support and advice.
Dotty2 xx
Thank you, Dotty, for your reply the tears and fears come in waves, and you can't stop them, can you?! Tonight I am okay, and tomorrow evening I will feel relieved that the radiotherapy has finished, even if my skin is sore!
naz
Hi there,
I too am in the waiting game. I am sorry to hear about your recurrence and the all the new worries you have with scans and results - it all really sucks. I recall that waiting and not knowing was the worst part of my initial BC diagnosis a year ago. Now I am awaiting a repeat CT 9th Dec,as lung nodules were seen on my last one and they are not sure if these are mets or as a result of a recent chest infection. My natural reaction is to think the worst after being on such a roller coaster of a year of chemo, rads and Tamoxifen. It is like a slow form of torture and I only hope that relief will come when I at least know one way or another. I still feel as though I am in a bad dream from the initial diagnosis!
Hope you are staying strong. Its difficult to find reserves after so much stress though.
Fingers crossed and sending positive healing cyber vibes out for all of us in this tough situation.
x
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
so sorry jules38 not haveing good day head all over the placexx
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
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
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.
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
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
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
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
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
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
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
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
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
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.
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
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
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
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
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...
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
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
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
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
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