I had a 17mm ductal cancer, removed by lumpectomy in march, snb showed no spread to lymph nodes and no sign of vascular invasion, was grade 3 and her negative, vaguley oestrogen positive.
I am having chemo ( 3 fec down, 3 tax to go).
I am 36. No family history.
Has anyone had ct scans, bone scans etc in similar circumstances? Am thinking of asking my onc but would like to know a bit more from ladies as to whether it is totally off the wall, or just regional practice, and also how difficult the tests are.
Hi an awful lot of it does vary from hospital to hospital… some oncs like to do all the scans on first diagnosis, others only scan people they suspect might be at risk of further spread on first diagnosis… Once you have finished all the active treatment I know some oncs like to do some scans so they have a “baseline” for the future.
After active treatment it tends to be a rule of thumb that if you notice a problem and it goes on for more than a couple of weeks to contact your gp / bcn and if concerned they will investigate… (eg bone pains, dizzyness etc etc) But they don’t tend to do routine scans each year or anything like that… The exception being people on trials or long term studies who are monitored much more closely…
Honestly the scans are not too bad… Chest xrays take seconds - it is longer to get changed lol CT scans - depending on the area of interest you might have to drink a strange drink first… then lie on a bed they have to put in a line in your arm as they send in a liquid mid scan, and the scanner itself is like a giant doughnut that spins quickly around you. Bone scans are very similar to CT scans - i’ve never had the bone density one but have had a nuclear bone scan twice (that checks for bone secondaries) and you have to go for an injection and then go back for the scan a couple of hours later and again it is just a case of lying on a bed whilst the scanner passes over you. MRI’s are totally bonkers! lol It is the usual lie on a bed but the space you are put into is much smaller and it makes noises that you really cannot describe but they do give you headphones and if it is a breast MRI (which is what I had you have to lie on your tummy and your breasts go in holes in the table - honestly lol )
i had 1.9cm ductal cancer removed by WLE, SNB showed no lymph involvement, i do have extensive lymphovascular invasion, it was a grade 3 triple negative tumour and i had epi-cmf chemo.
this was y 2nd breast cancer which i got at 40 after having a grade 1 er pos tumour in other breast at 37.
i had no scans as they only do further scanning at my hosp if you have positive nodes.
i do get scans if i have complaints eg i had a bone scan and mri after chemo because of bone and joint pain which they have put down to menopausal symptoms following the chemopause.
i also had a ct scan a few weeks ago as i was getting spaced out feelings in my head which they think was withdrawal symptoms from coming off my ant-depressant.
i wouldnt have got these scans unless i had symptoms that warrant further investigation so if you are fit and well, with no concerns and side effect free they probably wouldnt do further scans.
I would imagine you would be refused a request for a scan, on the basis there is no reason to suspect any secondary spread. The scans are expensive, but not difficult. The standard would be a CT scan for soft tissue and a bone scan. The bone scan involves being injected with a radioactive isotope.
I’m not even sure if you can get a scan simply by paying for it yourself - doesn’t there have to be a medically valid reason? You are clearly worried, but I imagine the probability of having secondaries with no vascular spread is virtually nil. I don’t know what other method cells would have to migrate to a distant site. Maybe someone more knowledgeable than I could expand on this.
I think you should raise your concerns with your onc, who should be able to reassure you. I know its hard not to worry, but with no lymph node involvement and no vasc inv, you really shouldn’t be concerned.
i had 1.9cm ductal cancer removed by WLE, SNB showed no lymph involvement, i do have extensive lymphovascular invasion, it was a grade 3 triple negative tumour and i had epi-cmf chemo.
this was y 2nd breast cancer which i got at 40 after having a grade 1 er pos tumour in other breast at 37.
i had no scans as they only do further scanning at my hosp if you have positive nodes.
i do get scans if i have complaints eg i had a bone scan and mri after chemo because of bone and joint pain which they have put down to menopausal symptoms following the chemopause.
i also had a ct scan a few weeks ago as i was getting spaced out feelings in my head which they think was withdrawal symptoms from coming off my ant-depressant.
i wouldnt have got these scans unless i had symptoms that warrant further investigation so if you are fit and well, with no concerns and side effect free they probably wouldnt do further scans.
It may be practices vary throughout the country but I was treated at The Royal Marsden which is well-respected top cancer hospital and would imagine I was therefore given the best care. After WLE and axillary clearance followed by 25 sessions of radio, I was ‘dismissed’ from active treatment. I had a check-up after six months (physical examination and blood test) and then a mammogram after one year.
At my last check-up in February of this year I told the oncologist I was suffering from severe back pain. He decided this needed further investigation and sent we first for a bone scan. This showed a ‘hot spot’ on my spine which may have been an indication of secondaries. I was then given an MRI which indicated that whilst I did have spinal damage it wasn’t caused by cancer.
The point I am trying to make is that unless you present with other symptoms it is unlikely that you will be offered any scans other than an annual mammogram and blood test.
Hi, I had a multifocal ILC grade 2 / DCIS removed with radical MX and full node clearance, I have had no further scans/tests other than the ones to diagnose the bc. No nodes affected, I won’t have rads after finishing chemo (2fec/4tax-c), not sure yet how the follow up will look like. Tina
Thanks eveyone. I am under care of the christie in Manchester and have a lot
of faith in them it’s just this breast cancer tha freaks me out . Thanks for the advice, seemsthey are on a pretty standard track with me .
On the day i was dx they booked me in for ct and bone scans, and once they had the results they booked my op for wle and snb (which was confirmed as grade 3 but no lymphs involved).
First time round I had clear node-sampling and no vascular invasion. I wasn’t given any routine scans but asked for an ultrasound regularly as I was totally paranoid (they suggested every 6 months for 3 years, then every year until I’m 50).
About 6 months after surgery, I had unexplained pins and needles in my legs - all in the mind, I’m sure! HOwever, they took me seriously and I had MRI and CT scans - clear.
This time round with node involvement, I was given an MRI scan the same day as diagnosis. They wanted to give me a chest xray and CT scan too but couldn’t because of pregnancy.
I’m at Brighton, Sussex Royal.
If you think you’d have some peace of mind after further scans, I’d ask for them. xx
I also had no node involvement but a large tumor and a full mastectomy. My surgeon said I could have any scan I wanted but he didnt recommend it. Basically he said they can pick up loads of things that may or may not be cancer and so lead to lots of uneccessary worry.
I asked the oncologist again today and he said the same thing also that it wouldnt change my treatment or help me to know I had it elsewhere in my body ( It would help me to know it wasnt!)
We would all love to be told we are totally clear but I decided not to have the scans.