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!!!
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.
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.
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!
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
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
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 8) 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.
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
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.
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.
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.
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
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.
& they got clear margins, no lymph node involvement & no vascular invasion.