How regularly are you scanned?

[Guest user]

Hi, thanks for your reply and info about blood tests. Re: the imaging issue tho, my reccurance in mx side was visible and obvious to the naked eye, but WASN'T found by examination, breast surgeon refused to image lump saying it was scar tissue. Plastic surgeon imaged recon with CT prior to planned surgery to release painful capsule, discovering tumour that had already invaded muscle and fat. If BS had listened to me regarding imaging the lump I may have been able to keep my reconstruction, and been allowed to go ahead with my planned LD recon for new primaries on other side (cancelled due to reccurance in recon side). I feel really strongly about my future risk but BS still maintains no imaging in future, despite her missing this, and what it's cost me. Sorry, not ranting at you, just want others to know, if I had not had pain and PS surgeon had not ordered CT, I could be looking at a much worse scenario now. Yet BS insistent no imaging... Post

[Lulu34]

Post
bloods are not routinely carried out after primary BC. As tumour markers are not reliable. They can be normal when you have mets and abnormal when you don't. You are more likely to have a local recurrence than mets and tumour markers don't increase reliably in this situation. Women. With mets have tumour markers to monitor their disease. Eg normal bloods, decreasing Or low results show things are stable. increasing marker levels can indicate the chemo or other long term treatment is not keeping the disease under control.

in terms of recurrence after mastectomy it is very unusual to get a recurrence.... But if you so its much more likely to be found through examination as yours was..... However that won't take into account human error... Eg your was felt by you and your team but not investigated.

as you say MRI is expensive, but its also time consuming to carry it out and to read the films for something that its very rarit they do have to draw the line somewhere. Mammos themselves are not 100% reliable. Ct exposed to something like the equivalent to 40 X-rays so as tradition increases your risk they wouldn't want to be exposing you to that regularly. Ultrasound is not reliable as it doesn't show the whole area just where the probe goes.... small areas at a time and not one full picture.... It is read on screen and not through films so looking for screening its not helpful and would have high chance of operator error. However if somebody has a lump or mammographic abnormality they can use US to look specifically in that area.

they are never going to pick up 100% of new primaries or recurrence on annual screening following treatment.... you only get a Mammo 1 day a year so its very lucky when we do pick things up that they just happen to be visible on that day.... The day before they may not. And for some women they aren't visible. You are still more likely to find something yourself..... If you can feel something and so can your team demand they check it thoroughly and don't just leave it to chance.

unfortunately there will always be cancers that never quite follow the rules... but the follow up is for the majority who do.... I also didn't follow tithe rules bc no 3 was 1 in 1000 chance of being in that area and not routinelt checked or removed and previous neg biopsy... So I do get where your coming from.
Lulu

[Guest user]

Hi, occult or hidden tumours don't always show on mammo, but may appear on ultrasound, CT or MRI. Problem is cost and exposure to radiation. MRI is the most expensive but no exposure to radiation as uses magnetic imaging. CT is very accurate but bigger exposure to radiation and the risks that brings. Mammo is not possible post mx and or reconstruction. I want to live tho, and feel some kind of imaging would give me a much better chance to achieve that, having already had a reccururance and second primary diagnoses. I have only ever had bloods for FBC, and biochemistry (liver function), I am not sure if tumour marker bloods are done on breast cancer patients, does anyone know? Post

[Guest user]

Thanks so much for all of your posts. I have found them really informative.
I had a double mx and immediate implant reconstruction. I have been told that there is no point doing a mamogram or breast scan as 'there is nothing to scan'. Just wondered what others thought of this? Is it even possible to have a mamogram if you have implants?
I also have the brca 1 gene and wondered if this would affect the amount of follow up/scans I get. Finally, is there a blood test that might pick up any reoccurance?
Thanks again
Sarah

[Guest user]

Hi, I had occult tumours plus wide DCIS leading to mx, chemo, rads and tamoxifen in 04,05. Despite tumours not imaging my breast surgeon refused to let me have any further imaging on my reconstruction, which worried me greatly. I had a recurance in Mar 13, 27mm tumour, which despite being visible, was ignored until I started complaining if pain and PS did CT scan prior to surgery to release implant. Tumour had invaded the muscle by the time it was found, so I lost whole reconstruction. I had new primarys on other side too, so was double mx, implant recon, this time. My point is, I may have been saved some of this had I been allowed a scan every couple of years. My tumour was obvious, my BS kept telling me it was scar tissue in recon. I have no trust in her whatsoever now, and despite her error, she still refuses to do any scanning in future saying, digital examination is all that's required after double mx. Well, digital examination did nothing for me that time, scan found it. So option is to live with worry or find cash for private scan.

[sarah19728]

Hi Sarah
Like you, I didnt feel ill. Unfortunately my BC had spread to my lymph nodes but only 2 were effected. In 2009 i was diagnosed with left mastectomy, followed by chemo, radio, herceptin and finally reconstruction 2 years ago. I have since asked my Consultant about scans because a friend of mine gets regular scans but with a different consultant and she said that she doesnt do that, just wait and see how you feel. Which begs the question, what is normal and what is not if i wasnt feeling ill in the first place?
I have since had a brain scan as i was getting some pretty bad headaches, but that came back clear and was diagnosed with migranes (never had one in my life before).
Let me know how you get on.

Sarah x

[sarahlousie]

I was dx back in 2011 with both primary and spread to both lungs the mets were detected after a ct scan since June 2011 these mets have stayed the same but they have scanned me a number of times every 3 months then 6 months and now this period is the longest I've been without a scan the last one was in Oct last year they told me that as I've stayed stable they don't want to put more radiation into my system and will only scan me if and when my symptoms change like someone has mentioned this does worry me as I didn't have any symptoms before infact I looked the picture of health (this is why cancer is so terrifying). I am on herceptin forever and am into year 2 of tamxoxifen. x

[Lulu34]

"My point is that people who are diagnosed with secondaries, whether it be found by imaging or by symptoms, can have treatment that can shrink the tumours, right? So if imaging shows mets that are not yet symptomatic, and the patient is started on treatments immediately that control the growth, or even shrink those tumours, the patient might never become symptomatic, or at least not for a longer time."

Apparently if its going to halt or shrink it will do this the same whethrr its found through screening or symptoms.... I dont know all the mechanisms and you would think that having treatment very early on would improve outcomes even more but it seems that the advances in treatment help just as much in symptomatic patiente as it would if picked up through screening. Its not even like one onc says this and one says that it appears to be fairly standard across the board As im pretty sure the us guidance is the same.

i guess they could do more up to date research to see if things have changed At all, but maybe thats not cost effective as they may feel its already proven.

Lx

ps... Just thinking about it some more....

maybe its the same outcome cos they dont necessarily treat asymptomatic mets aggressively... If you have stable bone mets usually treatment is a bone strengthener and hormone if er pos... Chemo isnt always given until there is further progression... Wonder if getting intensive treatment early would change outcomes.... Maybe thats where they should be researching?

x

[Morwenna]

This is something I am struggling to understand as well.

My point is that people who are diagnosed with secondaries, whether it be found by imaging or by symptoms, can have treatment that can shrink the tumours, right? So if imaging shows mets that are not yet symptomatic, and the patient is started on treatments immediately that control the growth, or even shrink those tumours, the patient might never become symptomatic, or at least not for a longer time.

So it doesn't make sense to me that research shows no difference in the survival rate or time between patients whose mets were discovered by imaging (if treatment is started at that time) as opposed to those discovered by being symptomatic. I just don't see how that works.

I do understand the argument that repeated scanning introduces in many cases unnecessary radiation to the individual, and also the argument that regular scheduled scans can exacerbate rather than relieve anxiety levels and make it harder for women to "move on". I'm not 100% convinced by the latter, although I suppose it could well be the case ......

[Lulu34]

just to reiterate.... its not about NOT having treatment.... its about NOT having scans looking for mets if you only have primary bc and dont have any symptoms.

if somebody was diagnosed with mets 6 months ago on a scan but only got symptoms today, and somebody else had no scan and only got symptoms today and both started chemo today the outcome would be the same.

[Lulu34]

doodlecat
a professor at the younger womens forum explained it that finding out about mets through routine intensive screening following primary bc would me you knew about mets longer but that the out come would be the same regardless of whether they were screen detected or symptomatic... finding them in the absense of symptoms ie not your situation wouldnt prolong somebodys life. if its picked up on a scan then the individual is then aware of it although they may not have developed any actual symptoms for another year themselves.

there may well be a whole other area related to people with primary and secondaries at outset, but that wasnt what the thread was about.

this is aquote from the cochrane report which i mentioned above.
Effects of interventions
• Follow-up based on routine clinical visits (experimental
group) compared to a more intensive surveillance (i.e. with
radiological/laboratory tests) (control group).
The updated metanalysis for overall survival of the GIVIO and
Rosselli Del Turco trials found no significant survival advantage
in the intensive surveillance group; Hazard ratio 0.98 (95% Confidence
Interval 0.84 to 1.15).

i didnt do the research just passing it on along.

[doodlecat]

Lulu you still haven't told me what you mean by the statement you made with reference to living with the knowlege for longer ( I have quoted it above).

Anyway no matter you are quite right this thread was not aimed at people with secondaries. I clicked on it because of the title of the thread and because I have had some scan issues lately.

Need to get off to bed now. Have a scan tomorow. lol

Night night,

June x

[Lulu34]

Doodlecat sorry if i confused you and sorry you cant access the second document... This is the name of it.....

Follow-up strategies for women treated for early breast cancer (Review)... More recent doc from 2012 which reviews all the research available.... If you want to google it....


I dont know your personal history and i was trying to clarify my post from a case for scanning patients following primary breast cancer.... (Obviously for issues relating to your own treatment your onc would be the best option).


anyway as cat said this info is relating my original post which was discussing the reason why routine intensive screening is not carried out following primary bc and the recommendations are for mammo and clinical breast examination Yearly or every other year for at least 5 years or unril age 50.


at primary diagnosis if you have positive nodes they normally scan you and that is because you are symptomatic... eg you had a breast lump, or maybe it was a different symptom that led to your diagnosis such as a spontanous fracture due to bone mets (v rare).... Most people its a lump.


it very rare for a screen detected cancer through the national screening programme to be metastatic and where this is the case it usually is symptomatic (usually a lump) but the individual hasnt noticed it themself or sometimes because people dont examine or check their breasts.


what i was referring to was following treatment for a primary BC they do not routinely scan looking for mets by intensive screening Like CT, US, bone scan, mri etc. Women on AIs do get a bone density scan every other year to assess for osteoporosis. Women on herceptin get a muga scan around every 3 months to monitor the effects on the heart. women with mets have ongoing scans to monitor how well treatment is working.

as for the confused.com moment i realised when i was replying that although i knew what i meant i wasnt certain it came over that way and it didnt lol.

lulu x

[doodlecat]

Thanks RevCat.

This is Lulu's statement that I am now questioning "But from the time symptoms develop to death was found to be the same . . . . . . . . So even if you know before you have symptoms it just means you have to live with the knowledge of mets for longer.

How can that be correct. If my mets had not been discovered my treatment would not include Zometa infusions and Adcal tablets so surely progression through bones would have been quicker.

I am going to stop thinking about it. I must have taken stupid pills today!

Sorry I am not understanding I am not usually so dim.

[RevCat]

Don't like to jump onto a thread that doesn't concern me, but I recognised some names and think that Doodlecat's concern needs a response.

This is how I understand what Lulu is saying...
Scans are usually done at initial diagnosis for those who are node positive to establish if there are already and detectabke signs of mets - this will determine the course of treatment.

Thereafter, if you had no evidence of mets, you will not get scanned again unless you have symptoms that suggest it may be mets, this is because the research shows that whether the mets are scan detected or symptomatically detected, the outcome is the pretty much same - it does NOT mean they don't treat them. What Lulu is saying is about detection not about treatment. From what I understand, scans will only detect mets above a certain minimum size, so you might get a clear scan and still go on to develop mets. Either way, mets would be treated with chemo, rads etc as experts decide.

From what I understand, people unfortunate enough to have mets are regularly scanned as this is how oncs can see how well treatment is working and/or if there is eivdence of progression.

If I have this wrong, someone will soon put me right, but please don't think anyone is saying that treatment won't make any difference to how long someone lives.

[doodlecat]

Lulu, you have muddied the waters further! I will have a look at the links you have provided. So for someone like me, who was not diagnosed with cancer (even though I kept presenting with lumps) until it had spread there is no point in me having treatment as I will die just as quickly with or without it?

Are you sure? This is pretty important.

Couldn't wait so had a look at the first link. Are you sure a paper from 2005 is still relevant? I am unable to access the second link.

[Lulu34]

Doodlecat

basically what research has shown is that a person survived the same length of time from the development of symptoms..... So if known mets are there but with no symptoms its the same as where you you dont know you have mets as you have no symptoms... But from the time symptoms develop to death was found to be the same..... So even if you know before you have symptoms it just means you have to live with the knowledge you have mets for longer.... Overall people are surviving longer following cancer diagnosis, not because they find and treat mets early, but because they find primary cancer abd recurrences early.

apologies if that still doesnt make much sense.

this an old paper but cant access more recent full txt articles...
http://onlinelibrary.wiley.com/doi/10.1002/bjs.1800760227/abstract
This is a cochrane review of literature on follow up
http://onlinelibrary.wiley.com/store/10.1002/14651858.CD001768.pub2/asset/CD001768.pdf?v=1&t=hjsv5rs6&s=bbdf522631eda31edd1f6ac8473828715b9fecc8


Hope that helps a bit

[geordiex]

now I'll be scanned every three to four months I think x

[geordiex]

I only had mammo and ultrasound before mastectomy mine was vascular her2 5cm clearance chemo rads herceptin for a year annual mammos and meeting with onc.No blood tests or scans ever after that and I now 4 years later have secondaries in my liver had I had routine bloods maybe something would have been picked up earlier ,as it was I went to gp thinking I had a problem with thyroid due to tiredness ,certainly did'nt expect my diagnosis ,but apparently with her2 the liver can be the first place it goes ,I had no nodes involved at all but as I say vascular ,ultrasound in my opinion would have been a good idea for me ,symptoms in your liver are very vague .

[doodlecat]

Lulu, can you expain what you mean by your paragraph commecncing
"Most people will not get a recurrance" up to "dramatically improve survival". I am not sure what you mean by "treating cancer that has spread before you are aware of it does not increase survival".

Sorry if I am not making sense -I think I know what I am asking!

June

[Lola65]

Thank you Lulu.

[catseye]

Yes, thanks Lulu, that all makes alot of sense. Very interesting that screening for asymptomatic spread does not improve survival - I did not know that and it does clarify my Onc's policy to scans.
Cheers XX

[Lozzarooney1]

Thank you Lulu for the clarification. I must admit I had also wondered.
Hugs Lozza x

[Lulu34]

Generally speak nobody gets scanned routinely. following diagnosis your annual follow up should be a mammo of both breasts if you have 2, 1 breast if you have 1 and no mammo if you had a double mx.

some surgeons ir oncologist will add additional screening such as mri of the breasts under special circumstances.... Eg a lobular cancer that didnt show up on mammo, or other mammo occult cancers, women with dense breasts etc.

also women carrying a brca 1 or 2 mutation or a tp53 mutation should have annual screening by breast mri, at least until age 50.

mammos should be annually (although in scotland some do them every other year for younger women or following an mx) and should be for at least 5 years or until you are being screened by the national screening programme if this is longer. In scotland most women are screened routinely for 10 years.

clinical examination is usually carried out for the first 5 years regardless of surgery.

at the time of diagnosis if you have positive lymph nodes or a certain number of positive lymph nodes (eg 3 or more positive nodes) staging scans will normally be organised.... These generally consist of a nuclear medicine bone scan, a liver and abdo ultra sound or ct scan and a chest xray.

this is normally a one off set of scans and it is to to identify if the cancer has spread beyond the breast at the time if diagnosis.... if you only have primary disease these enerally arent ordered again unless you have symptoms eg peristent worsening pain in your spine would normally have a bone scan. Persistent, worsening epigastric pain and ausea would warrant an abdominal ultra sound or ct, etc

women who have secondaries will normally have routine scans to monitor their existing disease.

women who have neoadjuvant chemo prior to surery will normally have a few scans to monitor their existing tumour and how the chemo us affecting it.

most people will not get a recurrence, most people will not get mets.... Scans are there to look for disease or monitor existing disease and thats why they arent considered effective in searching for disease that probably isnt there in the first place and they have researched in the past and found that treating cancer that has spread beore you are aware of it doesnt increase survival unlike for primary breast cancer where it does dramatically improve survival.

this is just a generalisation and like anything there will always be exceptions.

here to long, healthy, happy lives to us all

love Lulu xx

[Lola65]

I believe it all depends on any evidence of spread to lymph nodes. If they are clear after SNB all you get are annual mammograms. If they are not clear, you will get an MRI and/or CT scan. Apparently this is because scans can cause more problems than is acceptable, (they can cause new cancers) so unless there is evidence of spread they will not give them to you. I understand this is a national guideline.

I am on Herceptin so I get periodic heart scans. I believe people on hormone suppressants will get bone density scans to check on osteosperosis.

[spookymoo]

Hi I was diagnosed last July 2012, grade 3, 2.3 cm lump, er/pr+, her- and I had lymph node involvement. I had primary chemo from August _ December 2012 and I have had 6 ops since Feb finally resulting in Mx and DIEP recon. I am on Tamoxifen for at least five years. My oncologist has basically now discharged me and my surgical consultant will not see me now again until December (6 month checkup). I have been told no scans, except annual mammogram on remaining breast, and no further treatment or follow up unless I feel unwell. Pretty much been feeling unwell since chemo. Felt okbefore cancer diagnosis. Feel I have been left in limbo. Having lymph node involvement and also knowing tumour did not shrink on primary chemo doesn't help!

[catseye]

Hi,
The question of scans intrigues me too, largely because I've never had one. Diagnosed 2012, WLE and SNB, (no node involvement) Chemo, Rads and Tamoxifen.
My Onc said doing routine scans on everyone rarely picks anything up, and that they prefer to go on symptoms. But, as Sarah said, the primary BC had no symptoms.....
So now, its just six monthly checks, (annual from next year) with annual mammogram. It certainly seems to vary alot from hospital to hospital. I would have thought there would be national protocols..oh well!

[Bethy]

Hi
In 2008 I had a lumpectomy,full lymph node clearance ( 10/17 affected) chemo & radiotherapy and have been on tamoxifen for
4 + years . I am still monitored every 6 months. I have a Breast MRI sca ( lobular shows up on MRI but not mammogramm) & a mammogram at the first 6 months and the second I have my tumour markers taken. Interesting my oncologist is at The Royal Marsden and not where I was diagnosed or treated.
Bethy
x

[Guest user]

Hi,
I am 35 and was diagnosed with breast cancer in July 2012. I had chemo, a double mastectomy with immediate implant reconstruction and radio therapy. It had not spread to the lymph nodes. I spoke to my consultant recently who said that they would now see me every three months but that I would not be having any more scans or blood tests. Instead, they will simply go on how I am feeling and investigate further if I feel ill. This worries me as I felt fine when I was initially diagnosed and had no idea anything was wrong (other than finding a lump). I wondered if other people are checked more regulalry and whether you have scans or blood tests to check you are still cancer free? I have a suspicion that consultants differ in whether or not they give scans/blood tests.
Thanks
Sarah