Hi There
Just reading all these threads and it seems that most people have a barrage of tests before they start chemo. CT scans, Bone scans and/or MRI. I haven’t had any scans and neither my BS or onc have mentioned it. My tumour was 2cm and I was 1 node positive and am having 3 FEC 3 Tax (no rads as had mastectomy). I get the impression that every treatment centre has a different policy. I don’t know whether I should be asking for scans when I feel totally well but half of me is asking do I want to put myself under stress looking for stuff? the other half of me is thinking am I missing out on stuff? Any advice would be great.
Thanx ladies xx
Hi eal69eal
I too haven’t had any scans whatsoever and am going to bring this up with my onc on tues. I same as you had 1.5cm tumour and 1 node positive.
I know how you feel - I’m the same - want the scans but don’t want to know if anything else is wrong with me!
My local hospital doesn’t ‘cater’ for BC and I have to travel 15 miles to the next town for my treatment. I also have to go to another hospital for my rads treatment. In my town we have a brand new £66m hospital that I can’t use!
will keep you informed
Anita
hi ya
if you are in any doubt just ask your oncologist. It would be NICE to think that if a patient requires any particular test or scan then they will be told to have it, and that if they have not been referred for any tests or scans then it it because in their circumstances it’s not an issue. But the fact my original GP told me I had a fibradonoma (spelt wrong) I would always double check if you think you might need some attention that they haven’t told you you need. I know you might worry that you might offend the “experts” by suggesting they don’t know how to do their job but your peace of mind is much more important.
Hiya, I too have not had any scans other than the initial mammogram and ultrascan and it is something that worries me periodically but, for the time being, at least, I’ve reasoned that since they’ve removed the tumours (I had 2 at less than 2cm each and I had a mastectomy - with immediate reconstruction), tested 17 nodes, all of which were negative, and are giving me chemo to destroy any stray cells if there are any everything, so far, has been done to overcome this disease that I don’t want to cause myself any more worry by having further tests etc. I also understand that there was no vascular invasion. I may be proved wrong in time and may regret not having pursued the option of having further scans earlier - I know friends treated at the same hospital who did have additional scans when they asked for them - they were all clear - but it is just not a route I want to pursue. It is a dilemma, though, I do admit! It will certainly be interesting to hear what your oncologist, Anita, has to say on Tuesday - do let us know if you can.
In the meantime, I am going to take a walk around the garden (it is the size of a postage stamp so won’t take me long) - and I may just go naked and not wear my headscarf or hairpeice - I do have a few hairs on my head and I want to know what it feels like again to feel the wind blow through my hair!
All the very best
Naz
Hi all, I have the same ONC as Naomi I mentioned I was worried about pain in spine so sent me for bone scan to put my mind at rest, so I am sure if any of you have any worries ask your onc, I had lumpectomy 18mm tumour, 1 node positive no vascular invasion so did not have any more scans etc. By the way pain was osteo artthritis. I have few hairs growing very grey but what the heck. Have two more CMF to go then 25 rads which I am worying about, ( think a lot of it is false modesty and male radiographers.) Silly Mare.
LOve Bobbie
Hi i got info from two hospitals. The first said i would require a ct scan to check if the cancer had spread to organs, and to be over cautious they also recommended a bone scan. This they said they normally suggested for metastatic bc, not early bc, but they liked to be safe. My tumour was 2cm and 1 node involved. The second hospital said i would only need a cat scan and they didn’t advise bone scans for early bc.
I think policies do differ, but if you want the peace of mind, go to your doctor and urge them to give you the tests…
Hi
I live in the North East and have not been offered CT or bone scans.Diagnosed in Feb this year and had a MRI scan of breasts only because I had invasive lobular. Im one node positive, mastectomy 1.8cm lobular having chemo of EC. I presume because they think we are low risk and of course extra tests are what they would deem not cost effective, except for our peace of mind, unless we have any symptoms of pain etc. I suppose if we didnt have one node involved it wouldnt cross our minds.
But I think I’ll ask at my next appointment!
Lyn x
Hi Lyn,
I also live in the North East ( North Durham ) . I had 2cm IDC with 1 node involved DX last May. I too was not offered any scans at all. Is your Onc Dr Taylor ?
I asked her if I needed any scans and she said only if I presented with pain that I had longer than 2 weeks. She said that headaches and coughs for more than 2 weeks would be checked out also.
I had a lumpectomy, I was offered a mast and told it was my choice, I also needed 3 re-excisions as margins were not clear. I cant help thinking that the Mast route might have been safer.
Lots of love Andrea x
I was offered a routine CT scan one year after dx.I said no thanks.My onc said I was wise and I could have a scan if ever I had worrying symptoms.I am very happy with that as I hate all the waiting for tests and results.Very tiny mets dont show up on scans anyway and I have been told that early detection doesnt improve survival time or treament options.Remember I am NOT talking about primary dx where early detection is vital.
I had no node involvement and all I had was a chest Xray, the onc said that the stuff would be so small anyway and I would be referred for scans if I had any symptoms. Personally I am going to see how worried I feel further down the line.
I had grade 3 IDC and 2 positive nodes tumour was approx 2.5cm when I asked about scans the bc nurse said it depends on the “stage” of your tumour and apparently mine was not consdired to be at that level…!!!
??
Thanks Guys, that makes me feel so much better. This site is just great for answering those little niggling worries. I am happy not to have any scans right now but was worrying that I was just in a state of denial.
Hi Andrea and all
No my oncologist is Dr Hardman. I must admitt I didnt ask him about further tests as I was obsessed with other things at the time.
The mastectomy v’s lumpectomy is hard one. I was always booked for a lumpectomy but the scan indiacted I had another lesion present and was asked to wait a further 2 weeks for a biopsy and results and I couldnt do that having waited 4 weeks before surgery. Scan 4 days before surgery . I just wanted rid. As it turned out the other lesion was a LCIS and I had cyst. I think you can only do what is right at that moment in time. I can have reconstruction in the future.
My stage is 1 and grade 1 which again is low risk but I still had one node postive.
Its still early days for us I think to get our heads around this one.
Lyn x
Hi eal69eal , I have pretty much same diagnosis as you and i havent had a CT scan. My oncologist said you can have what you want buit basically told me to stop worrying as even going for scan and waiting for results induces a major adrenaline rush . He said a few things …
in summary - you are acting like you are waiting for something to happen !
Also what if you get bad news , then what do you do , its uncurable anyway …
Cally x
Hi Cally
How I agree! I have had every test going. I have no symptoms, ie pain but because I have (had?) Grade 2 HER2 5cm tumour sent for every test possible. The worry and waiting for results to myself & relatives is unbelievable!! Like my husband says they take no account whatsoever of the psychological effect of anything.
Starfish x
I had 1.5cm grade 3 tumour, WLE, no lymphnodes involved and no cancer cells in margins round the lump and I really do not want a scan. Having chemo at the mo as adjuvant therapy and cannot see that a scan or x-ray will give any benefit - only risk. You are very welcome to think I am my sticking head in the sand but I don’t feel this further intervention is worth it. You may want to google CAT scan risks to see why I hold the views I do.
I’ve no idea what the onc will say if she offers a scan and I refuse…
Hi All
Had 2nd FEC today and saw my onc. I asked about scans (or the lack of them in my case) and this is what she said:
Why look for something which may not be there??
If I have an ache/pain for above 2 weeks then that will be investigated
breathlessness will also be investigated.
Mammograms will be yearly and that’s all that will be done.
Good news on the holiday front - I should be ok to go to Ibiza in Sept YIPEEE!
Anita
Hi All
I so agree with the comments. I think it is sensible to wait until you actually have symptoms rather than looking for something that is not there. Unfortunately if you have lymph nodes involved it appears to be common to institute all these scans.
I will certainly check the web for info on CAT scans. I have read an interesting book “Choosing to Heal” by Jane Edwards which questions the radiation exposure of scans including mammograms. It is something I wonder about having just been diagnosed with bc after 2 negative scans since reaching 50 and finding the symptoms myself.
The onc is keen for me to have an MRI but I am going to question this as I have previously had a bone scan and been told it was clear apart from normal wear and tear.
But I guess it is up to each individual how far they want to take it. Some like to know everything.
Starfish x