waiting pet scan results

I needed to share my worries, and ask for some advice as I think i’m going mad…

I was diagnosed 5 weeks ago with idc which initially was though to be contained, however it was found in one of my lymph nodes. I had a pet scan yesterday before my treatment is planned but I have been suffering from
pain in my hip for the past 3 months which wakes me at night, which I had way before my diagnosis. However I now have pain in my ribs, sternum and spine and one of my knees. I have convinced myself that this is tumour flare caused by the tamoxifien I have been taking since diagnosis. I cannot get a grip and am
constantly crying. My sister died from bc ten years ago and it was in just one of her lymph nodes too, and I am convinced that that’s whats going to happen to me too. Could any ladies with secondaries give me some advice, if it has spread how long can I expect to live, I have three children and am terrified i’m going to leave them, like my sister lefter her little boy.
Sorry to moan and be so negative but i’m in a very dark place at the moment…
Michelle xx

Michelle

Oh I do feel for you. This was me last week! I had bad pain in ribs, pelvis, and one knee and had been sent for bone scan and ct scan. The wait was horrendous BUT the bone scan came back clear (and most of the pain went when I heard!!!), the ct scan showed two “things” on liver but they think they are cysts are having ultra sound Monday to confirm.

I think we all worry ourselves silly about secondaries, I won’t say don’t worry cos you can’t help but worry about every pain, twinge, cough etc. The wait will soon be over, keep extra busy and fingers crossed for you that the scan comes back clear.

Keep in touch
Love Donna xx

Hi Michelle
I was diagnosed with stage IV from the start with secondaries in the liver, bone and lungs from the start after a routine scan last June aged 49. I had no lumps and no symptoms. Since diagnosis I have done 2 lots of chemotherapy and Tamoxifen and had progression. I also have brain mets which were recently discovered, again with no symptoms and am now on Xeloda chemo.
I haven’t told you any of this to freak you out! It’s just that when you have a diagnosis of BC, as Donna says, every little twinge or pain gets amplified and you end up thinking the worst. Firstly, it is very unusual to get what they call ‘distal metastases’ so it’s unlikely to be in your knee. When I was on Tamoxifen I had lots of aches and pains and remember it is supressing your Oestrogen so there are bound to be lots of symptoms which come up.
As to your question about how long have you got if it were to be the worst case scenario - check the bottom of your foot. Any expiry date there? It’s impossible to tell how people will do if they have secondaries, however I know of women who have lived with bone mets for over 15 years and others who have done well with liver and lung secondaries.
I hope your scan shows that there is nothing to worry about (you too Donna!) and you can move on with your life, enjoying every day!
Laurie x

Hi mickey

I’m sorry to read that you are having a pretty tough time at the moment. As well as the support you are receiving from the other users of this site it might help to talk things through with 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 5.00pm and Saturday 10.00 to 2.00pm.

Best wishes Sam, BCC Facilitator

hi all,
i had ct scan for neck,back and hip pain which came back negative,the bone was degenerating in my neck which causes arthritis,am still in a lot of pain,on painkillers and waiting for physio appointment.however the ct scan showed small liver lesions,so i was sent for ultrasound.the man who did ultrasound was very offhand and said “there are definately lesions on your liver but i dont know why theyve sent you here because until they measure at least 8mm they wont show up on ultrasound.” i told my breastcancer nurse this who said thats good because nothing showed up on scan.i am now waiting for expanders to come out then i will ask for an mri scan as they have dismissed the liver lesions as too small to worry about,doesnt stop me worrying tho especially as my aunt died at 41 of secondary liver cancer.Please let me know what they say at your ultrasound and good luck.
Di.x

What is tumour flare please?

Hi,

I had my pet/ct scan results today which shows one abnormality, being a 5mm nodule on my lung. The consultant thinks it’s “insignificant” and will scan again in 6 months time. Has anyone else has anything similar to this? Thanks Michelle x

I had something similar, but on my liver. The reporting radiog suspected a cyst, so my onc decided to watch and wait. It was the same on my next scan (3 months later), but had disappeared by the one after that (a further 3 months on).

Not everything that lights up on scans is another nasty. I really hope that’ll be true for you, too. Take care xx