Hi all,I am having a whole body scan next wednesday and was wondering if any one else has had this and what is going to happen, and will they tell me if there is any signs of cancer there still( I had a double mastectomy and recon) also having liver scan on 4 jan if anyone can tell me anything I would be grateful. thanks
debbi x
Hi debbi
I had a CAT scan last week (bit like an MRI but you don’t go into a tunnel-just pass through a sort of metal hoop). You won’t get the results straight away. I had to wait a week for mine. A consultant radiologist has to analyse the scan and write a report on it and then send that to your consultant.I had to drink pints of Barium Meal (ugh!) before the scan and was dying for a wee after that! i was also injected with dye immediately before scan, which makes it easier to spot anything. The whole process is pretty painless (other than a desperate need to wee!) but i found the waiting for results pretty tough.
I’m having a mastectomy tomorrow and feel sick!
Good luck
Love Gill xxx
hi gill,thanks for that.I am sorry to hear about your op tomorrow.although I had a double mastectomy i had them seperately.the first one was last june and took about 2 week to recover you will be fine you will be well looked after.Which hospital are you at?The second mastectomy this sept was by choice as I didnt have cancer there I had recon at same time and am happy with it but 12 weeks on its still a little uncomfortable.It is awful waiting for results isnt it?i found that worse than the actual diagnosis.When they did my first op I had to wait 3 week for results to see if it had spread and it was awful.well I am just off to doctors again now so they can all say ohhhh you poor thing look at your scars…it drives me mad because I hate being pitied.
take care and good luck tomorrow x x
Thanks Debbi. I’m going into hospital in Norwich. Trying to be brave for my 2 kids (both at Uni so not too young!). Do you have a partner? How does he cope with it? My OH is being wonderful but I dread him seeing me post-op. Any tips?
Good luck at GP! My other big dread is going back to work (I’m the boss!) and seeing everyone for the 1st time.
Love Gill x
Oh Norwich,I live in suffolk so now I am dealt with by west suffolk hospital, but i had my first op in scotland then my second op and recon in selly oaks birmingham.Yes I do have a hubby who is in raf hence me always having to move hospitals,but he is brilliant,he saw me straight away after surgery, helped to change dressings etc, I dont really have any tips but i think its better to try and share everything with him and dont hide any feelings.At first I did not want to look at it but the nurses made me as I had to have dressings removed to have a shower and once I looked it wasnt that bad it was a neat row of stitches and a very good job they did too.And one night a few weeks after the op my hubby got himself a bit tipsy after a night out with the lads and got a bit emotional but ended it with i quite like having a mrs with one boob. unique he said…ok I laughed but you have to laugh its better for you.Now I have 2 again and he likes that too.Basically he just likes whatever makes me happy he is brill.you said you dread going back to work,and that you are the boss,if you have a good relationship with everyone before that should not change,just tell everyone to treat you the same as they did before ,thats what I did and pretty much everyone did.good luck tomorrow and i am sending you a big cyber hug.x.x.Only just got in from doctors the nurse was asking how I knew I had it etc etc and we ended up talking as friends for an hour,she had no other patients,her mum had breast cancer 30 years ago and she is 83 tomorrow and still going strong, which is just what i wanted to hear,an inspiration for us all when things are tough.take care.
debbi x x
Hi again
Thanks for your comments. It’s just so great to talk to other girls who’ve been through this. Think I’m going to do a ‘How to look good naked’ tonight and make my OH take some nice photos of me in my lovely underwear which will then have to be binned! Should be an interesting evening! Today is going so slowly. My ex (who I’m still good friends with) has gone to Leics to collect our daughter from Uni, my partner and son are at work and I’ve packed my bag about a zillion times! Had a few handmade cards from some of the children at my school today-seems they are missing me for the special stickers I keep in my office!! LOL! They cheered me up tho!
Glad your trip to GP went well.
Now off to try on my sexy Tesco PJs I bought yesterday!
Big cyber hug back to you
Love Gill x
Hello Gill
Good luck for tomorrow. I shall be thinking about you.
Love Anthi
Thanks Anthi
Sittingn here with 2nd cup of black coffee-as no more fluids after 5am-better be quick it’s now 4.53! Am terrified of op today but you ladies out there have been such a support and a comfort AND AN INSPIRATION! so if you can do it, so can I! Now off to wake up my OH so he knows 5am really does exist!
Love Gill xxx
Hi Debbi
Thanks for message. Had op on Friday and was home on Sat a.m.!!!
Drains came out on Monday as no longer draining-thank God! Had the dressings removed today so looked at scar for 1st time! Have to go back for results of nodes biopsy on Xmas eve! So far am feeling good but have had some sad (grieving?) times too. Wearing bra & softie for 1st time today so at least I look normal. Getting tired in the afternoons but seem full of energy in the mornings.
How are you doing? Are you having any treatment?
Thanks again
Love & hugs
Gill xx
Hi debbi
What is a prophalytic mastectomy?
I am glad that your chap seems so hopeful re your scan. The worst part is waiting for results. We’re supposed to be going to my dads at Christmas but have warned him that I might be a complete wreck if I get bad news on Christmas Eve when I get nodes results and tumour grade etc.
I’m looking forward to starting swimming again (I used to go every morning at 6.30 a.m before work!!) but have been told to wait at least 6 weeks!
This morning I sat in the bath and howled when I looked at my body. I am black & blue all over-never seen such bruising-and it is still a shock looking at my flat right side. Now I’m up and about I feel fine. My kids (20 & 18) have been great and my partner is very supportive.Do you have children? No idea how old you are-sorry if that’s too nosey! I’m 48.
Re reconstruction-my surgeon said I must wait at least 2 years before considering it. She’s obviously thinking I’ll need further treatment. I can’t understand why some people have it done at the same time as the mastectomy and others have to wait a couple of years?
Have a great day whatever you’re up to. My big treat is going to be driven to Waitrose by my daughter for something scrummy for tea! I can’t wait to get out of the house!
love gill x
Hi Debbi,
Hope your CT scan went ok.
Just replying to your question about the liver scan. I had a liver and kidney scan 2 years ago and I have to say it was the most pleasant ( if you can use that word in relation to this awful disease) scan I’ve had and I’ve had a fair few in my time - 3 MRIs, 2 CT scans, 3 bone scans, a MIBI scan, 4 chest xrays and goodness knows how may mammograms.
Don’t know if you will have the same type of liver scan as me but mine was very similar to the ultrasound I had when I was pregnant. As far as I can remember, the radiologist put the gel both on my lower back and front abdominal area and I had to turn over half way through the scan but this could have been because they were looking at my kidneys too.
They won’t give you the results straight away but apparently input them onto the hospital computer which your breast care nurse or consultant can then access. At my hospital you can phone the breast care nurse a few days later to get the results but I don’t know if this applies elsewhere.
Wendy x
Hi gill
its a mastectomy by choice when there is no cancer there.I only had cancer on the left and had that done last june 2006, I had the other one done at same time as recon in sept 07.I think some people have recon done straight away because they have been given the choice by the surgeon , but if as in my case it is too urgent or they are sure you need chemo or rads they will advise you too wait .I do have 3 children two sons, aged 7 and 14 and a daughter who is 21 and I am 39.Maybe she told you to wait 2 years so you yourself can make sure you know what you want because there are so many types of recon its hard to decide sometimes.I know what you mean about howling when you saw yourself because i did too but I can assure you it does get easier, although I was never happy with having one boob but you learn to cope.If you are dead sure you want recon just keep saying it to them every time you have an appointment ,they might just be testing you to see if you are sure.I feel so much better now I have had recon,I wont say normal because what is normal?It just feels good to put a bra on and not think are they even or can people tell I am wearing a false one.I hope I got that across in a way you understood.Enjoy your tea out.
love debbi x x
Hi wendy,Thanks for your info.Well I think the scan went well although he could not give me results there and then he said he had been doing it for 38 years and did not think I had anything to worry about, which felt like a big weight off my shoulders because I was sure I would get bad news,which i am sure everyone on here can associate with.It makes you a bit paranoid once you have had it,sometimes I go to sleep with cancer on my mind and wake up its still on my mind, its a nightmare sometimes.but I suppose now I have to try and think positive.
take care
debbi x
Hi gill, how daft am i?I spelt it wrong anyway, its prophylactic…sorry,I am a bit daft lately,its a side effect…well thats my excuse and I am sticking to it.
debbi x x
now I am confused,I have received another letter today for an appointment in February for a dexa scan???what is this?? I thought after my liver scan and what i had on wed that was all i needed,does anybody know?
debbi x
Hi Debbie,
The dexa scan is to measure bone density. Often as a consequence of treatment the bone density goes down with treatment such as armidex.Its not to do with cancer.
Hi debbi - a DEXA scan is to check bone density - it is different to an ordinary bone scan which looks for tumours, fractures, arthritis etc. I have them every 2-3 yrs as a result of taking steroids for Crohn’s for 30+ yrs. The last one showed I have osteopenia, which is the stage before osteoporosis. I have recently broken a metatarsal bone in my left foot ( wasn’t playing football at the time!) and a bone in a toe in the right foot, so I guess I am at risk for further fractures. I was prescribed the bisphosphonate Alendronic Acid, 1 tablet weekly, and Calcichew/Vit.D twice daily to build up my bones. The DEXA bone density scan does not require injections or dye infusions - you just lay on an x-ray table and the machine passes over you. There is no horrid tunnel like the MRI machine.
The DEXA scan was ordered by my gastroenterologist and I don’t believe it has anything to do with my cancer. Having said that, I am on Arimidex and this aromatose inhibitor does not protect the bones as tamoxifen does. You may care to ask whoever has ordered the DEXA scan, exactly what the reason is.
Liz.
Don’t worry Debbi-I’d never heard of it so would never had known!
Am finding the bras a bit uncomfortable but it is still less than a week since my op. I just keep it on when I know I’m having visitors and then take it off and walk round the house looking lop sided! I’d love to have reconstruction, if a viable option, but hear it’s a huge op. The plus side seems to be taking fat from the tummy area to make a new boob!
How long do you have to wait to get your results from scan?
love Gill x
Hi Debbi,
I think oncologists have been advised to arrange scans for people who have been on aromatose inhibitors for a few years as these drugs can cause bone thinning
Following a scan in 2006, I was told that I had a T score of -1.5 which indicates osteopaenia. As my bone thinning was only mild and there had been no history of osteoporisis in my family previously, I didn’t want to take Fosamax at this stage because of the further possible side effects and the oncologist was happy to let me manage the problem by taking calcium and vitamin D supplements. I assume I will have another scan in the future to see how things have progressed and may then have to go on Fosamax.
Hi Liz,
I was interested in your comment that Tamoxifen protects the bones. Having been on Femara for 5 years but needing future protection due to my secondary cancer, I may be taken off femara and put on Tamoxifen. Oh well, at least tamoxifen has one advantage as well as all the negatives.
Wendy x
thanks everyone for your advice,you are all so helpful,its great having this site.I have to wait a few days for results from scan I had on wednesday and I know I should not get my hopes up but after what he said I am not worried anymore,once again thanks everyone, your all stars. x
debbi x