How regularly are you scanned?

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

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

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!

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!

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.

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

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

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

Thank you Lulu.

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

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 .

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

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

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.

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.

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.

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

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

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.

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.