hi, i'm 46 and was diagnosed with in-situ and invasive lobular cancer in my right breast in november (multi-centric and multi-focal, grade 3, ki67 23%, er/pr+ / her2-). i've had neo-adjuvant chemo, a skin sparing mastectomy and am in my second week of radio therapy. pathology from my mastectomy showed that i responded really well to chemo and i am considered node negative. i say 'considered' as the biopsies of two sentinel nodes showed 10 single tumour cells in and around one node, which is deemed as constituting node negative. however, as this is a post-chemo result, node involvement pre-chemo is unknown although MRIs didn't indicate any involvement, and pathology didn't show any scarring in the nodes to indicate that cancer cell within them had been blasted by chemo. i've been wondering (and worrying!) about additional scans to check if the cancer is present in other parts of my body... neither my breast surgeon or medical oncologic advise that i need them (and caution against 'unnecessary' scanning). but read about other women with a similar diagnosis (or sometimes lower grade/staging) who have been referred for body and/or bone scans.i appreciate that the diagnoses, experiences and treatment paths of others differ greatly, but those ten single cells are playing on my mind! :/so i was wondering what the experience/thoughts of others may in regard to body and bone scans.thank you! lvlw xxxps - i have an other question about mammogram MRIs that i will post separately, but will again include my diagnoses blurb - apologies for repetition! :blush:

I am mystified by the variety of attitudes there are to MRIs etc, for checking for the presence of a cancer recurrence. Some doctors seem to have no issue with signing off on them whereas others are highly resistant.My BS said my cancer can reoccur locally, in my skin, my armpit, my scars, in the fold of flesh beneath my foobs and in my chest wall. How will he monitor? By regular check-ups, visual and manual examination. But you can't see or feel tiny cancers, nor ones in the chest wall. My original tumour was so deep no one could feel it. Would it not be simpler and safer to have an annual MRI scan? Is it a cost issue? Machine availability?I understand that MRIs pick up many 'things' that can lead to tremendous anxiety, that they can send you deep down rabbit holes of investigation. However if you've already had cancer, your anxiety is pretty bloody high anyway. Why do some doctors understand and accommodate this while others discourage or refuse?It all seems very odd to me.

I was having my yearly mammograms and doing everything I was told after my first diagnosis then I got a really sore leg, I thought I had pulled a muscle in my leg at the gym but ir didn't get better so after almost 3 months of pain killers that did nothing for the pain and xrays that found nothing even though the doctor knew I had had cancer, they finally got around to a bone scan, well the tumour they found was so big it had almost eaten all the way through my bone and had to go into hospital immediately to have a pin put in my leg to stop it from fracturing as wel as multiple other tumours, I am positive it would have been found much sooner if I had been having even bi annual bone and ct scans.I wish now that I had insisted maybe it wouldn't have been as wide spread as it is now.

Bone scan all clear so I’m happy about that.

When my sister had breast cancer some 20 odd years ago she had 6 monthly scans...bone and cat scans for 5 years.3 months after all clear for 5 she developed rib pain and was found to have mets.Did the routine scans find the cancer ? Nope, Not until she felt pain.Her journey made me surprised to have no follow up scans. However her journey also helped me understand why.Since my diagnosis and completion of treatment I have required scans. One due to back pain, which we all felt was my arthritis but my Dr thought it best to check. The other time was after what felt like period pain (menopause was 3 years ago). I was given an abdo CT which was all clear. Both ourselves and our Drs are vigilant after diagnosis so you will probably have some scans over the next few years...just to exclude worries and pain issues of unknown cause. And hopefully like me...they'll just be natural aging and the odd mild gastro bout. Kath x

I knew I was node positive from the start, (mine tumour was invasive ductal, not lobular) so I had a multitude of staging scans and tests before starting chemo. Although my surgeon and oncologist both said the same thing to me about not having routine scans. However, my surgeon has quite happily sent me off for a bone scan and or CT based on symptoms that I've told her about, at each of my 3 visits since finishing active treatment. So far so good. Huge congratulations on having a good response to chemo, though. That's fantastic

Body and bone scans | BCNA Online Network

melclarity
Member
7 years ago
Yes @Primek you explained exactly what I was told about the scans. x
primek
Member
7 years ago
When my sister had breast cancer some 20 odd years ago she had 6 monthly scans...bone and cat scans for 5 years.
3 months after all clear for 5 she developed rib pain and was found to have mets.
Did the routine scans find the cancer ? Nope, Not until she felt pain.
Her journey made me surprised to have no follow up scans. However her journey also helped me understand why.

Since my diagnosis and completion of treatment I have required scans. One due to back pain, which we all felt was my arthritis but my Dr thought it best to check. The other time was after what felt like period pain (menopause was 3 years ago). I was given an abdo CT which was all clear.

Both ourselves and our Drs are vigilant after diagnosis so you will probably have some scans over the next few years...just to exclude worries and pain issues of unknown cause. And hopefully like me...they'll just be natural aging and the odd mild gastro bout. Kath x
melclarity
Member
7 years ago
Yes i totally agree, i think thats what we all want is the informed approach absolutely. So i guess hes saying no point in a scheduled scan when nothing there as their protcol is pain or symptoms that warrant investigation. Frustrating but he said all we have is early detection. Unlike routine mammos which ive had yearly for like 14yrs....hmmm and i have to wonder i only got dcis about 4yrs after yearly mammos....lots to think about. We are not advanced enough to detect it at the earlier stage which is what we want. Crazy really. I think have one for peace of mind then you know. X
Lvlw
Member
7 years ago
thanks @melclarity - so pleased that your full body scans were negative.

it's interesting to hear about your experience and advice from your dr alongside the experiences of other posters.

i've also found it interesting to hear about the approaches in other countries as part of my research, where regular schedules of monitoring that include scanning may be more routine (where i realise doctors may have different considerations when making their recommendations).

i'm looking for an individualised approach to post-treatment scans and an ongoing monitoring schedule. i appreciate the concerns re constant scans (both in relation to scanxiety and/or exposure - something i need to do more research on!). i had 10 (known) cancer cells active after chemo and they play on my mind! while there may not be treatment for something that may be found, i would like to be coming from an informed perspective that i know it's there, even if the only approach it :)

luan xx
kmakm
Member
7 years ago
Thanks @melclarity. I get it, but I also kind of don't. I'll have a chat with my BS next time I see him to try and get my head round it.
melclarity
Member
7 years ago
They certainly do all have differing opinions don't they? I just wanted to weigh in having been on this path for 7yrs now and 2 bouts of Breast Cancer. After my last diagnosis and chemo and dealing with an Oncologist,he explained to me after that was finished that there is no need to do any scanning constantly. There is no monitoring as you talk about @kmakm for yes it can return absolutely anywhere. He explained that we haven't developed in terms of diagnosis beyond being able to detect cancer until it is active and present. He said unless you have abnormal symptoms you wouldnt be investigated, which made sense. Especially after having chemo, it would be less likely for anything to be found. W

When I had my recurrence, I had surgery and before being released it was mandatory eventhough I had no node involvement, to have full body scans...all negative, to make sure prior to chemo there was nothing else.

So Ive heard alot of people talk of this, and all generally say the same thing, they just wont send you for constant scans because it doesnt work that way and its not in your best interest for constant scanning. I admit I was shocked because my thoughts were, I want to know and be ahead of things...he said though we detect early, we are not developed enough in diagnosis, so I think we need to look at where we are in treatment, and if we have any abnormal symptoms that would warrant it.
x
kmakm
Member
7 years ago
@"Kiwi Angel" Most excellent news :*
Lvlw
Member
7 years ago
@Eastmum - it's really interesting that your scans were pitched as routine for you. as @kezmusc says, drs all have different opinions! like you, i would like to have the scans so that i can be looking at things from an informed point of view. Re. the MRIs - i have an expander too so this will probably rule me out for MRI until it's removed (although this wasn't the reason my surgeon advised against it). i had wondered about this so thanks for clarifying.

i hope things are going well with chemo for you @Eastmum xx
Lvlw
Member
7 years ago
@kezmusc thank you for outlining your experience. i'm pleased to hear that your scans didn't show anything of concern.

i think i'll go for the scans now for peace of mind, but also a baseline. i was also interested that you had an MRI as well as MG and US for your 12 month post-diagnosis scan. I popped up another post about MRI as my breast surgeon has advised against it for me, although my initial diagnoses was quite difficult to see at first in MG and US. i understand that MRI (and other scans) can show up things that need further investigation that may not be cancer-related, but if the sooner i have a baseline then it can be used as a comparison.

re ongoing scans - i would have thought that if you had an MRI you wouldn't need the others as the MRI is so sensitive? but really, i'm learning it all as i go at the moment! and the price for the MRI is just shocking! :#

one thing that i had read about regular MRIs that use the contrast, is that the type of dye that is used for the contrast needs to be considered when having regular/many MRIs (not mentioning to be alarmist, just to be informed :) )
Kattykit
Member
7 years ago
Thank you, I am just waiting on scan results, no news is good news, no phone calls so I am taking that as a positive sign.