I wonder if anyone can help with this. Ive been wondering why some people are sent for scans on their liver and bones at the time of diagnosis and not others? Is it to do with the blood tests they do? Do these highlight suspisious things?
While I was in hospital the lady in my ward with me had test done on her liver and bones and was told things were fine. I have not had any such tests. We both HER2 positive grade2/3. Both under same consultant. Im starting chemo on 20th for 6 months then radiotherapy followed by herceptin and tamoxifen.
Is it normal for these tests not to be carried out on everyone. Help would be appreciated.
i haven’t been sent for any scans either, though my tumour is grade 1/2 and i am oestrogen positive too (on arimidex now) I’ve been told i’ll need to go for a bone density scan at some point, but i guess that’s different to a bone scan?
I had scan done because it was clear that the cancer had gone into my lymph nodes under my arm so the doctor wanted to check to see if it had gone anywhere else in my body including my blood stream. Maybe it’s because of the lymph nodes? My cancer was grade 3 and HER2+
Hi,If theres evidence that the cancer has spread to the lymph nodes or if theres vascular invasion were the tumour is starting to create its own blood suply,then you will need futher tests to make sure it hasnt gone further afield.
I had one node affected but still not sent for any scans, apart from a lung scan to investigate a shadow that turned out to be a radiotherapy burn. My Onc said that you only get scans if you present with symptoms as too many scans are not good for you. I think they should give you them as a matter of course if only to put your mind at rest.
Love Andrea xx
But what if it had the opposite effect Andrea?I dont want scans unless I have symptoms-you wait for the scan,you wait for the results which are often inconclusive,you know anything under 5mm doesnt show so even if they say its clear you think what if…?Then you want another a few months later piling up more and more radiation.Not for me thanks-when I have to I will but until then no thanks.
You say piling up the radiation, which sounds very very daunting. My onc is all for doing scans when needed and says the amount of radiation is small and not harmful. Quite a few people i know with secondaries have scans as often as 3monthly.
Any links for us to read about radiation and scans??? There seems to be something written about everything on the net.
Interested Horace to know what you mean by the comment ‘when i have to I will, but until then no thanks’
What i find is very scary so many friends have had hardly any symptoms and been Dx with bone mets, liver or lung mets sometimes sadly all 3.
Sometimes i have this thought that i would rather not know, until its too late for treatment and i die quickly. Sorry if that offends anyone but its how i feel.
I wonder if it depends at which hospital you are being treated? I was told that they do not routinely do scans where I am being treated unless symptoms present themselves. I was Grade 3 with 2 lymph nodes involved, chemo, rads and will be on Tamoxifen for 5 years as ER and PR+, and was not offered a scan. As Horace says, I don’t know whether a scan would have offered any reassurance as anything under 5mm would not have shown anyway. I found the whole process so stressful, I don’t think I could have faced any further tests or scans at the time. At the time I was having chemo, a couple of ladies on the ward had been given scans but they had more lymph node involvement than myself, so perhaps this is a determining factor? I don’t know what type of cancer they had either so that may also have been a factor in them being offered scans. It’s all so confusing.
I was told that scans are usually necessary in order that the most suitable treatment protocol is selected, ie the oncologist has to know exactly what has landed on their plate before they decide on how to proceed.
You see this is where I get confused. If scans are necessary to ensure the correct treatment protocols why wasn’t I offered a scan and as I say, when I later queried this (because of grade of cancer and lymph node involvement) I was told they don’t routinely scan at the hospital where I am being teated. I must add that my lump was small at 12mm and there was no evidence of vascular invasion. I had 3xFEC and 3xTAX and start rads this week. So how do I know I have received best care? It just seems that the type of tests and treatment you receive can depend on where you live in the country - or is this just me barking up the wrong tree?
Hi Julie
I think the standard practice is only to do scans if they feel it is likely to have spread outside of the original site (breast and underarm). The evidence shows that people often present symtoms of mets long before they show up on scans so they do not see that they provide real value or support. The argument i have been having with my consultant is that I had no symptoms before I was diagnosed (grade 3 stage 3c) and it was only picked up in the family history clinic I attended annually - if it had not been for that I would probably be six foot under now (no offence meant to anyone) so I am thankful that they did find it. I am therefore not convinced in my case that the symptoms will appear first - after a lets throw my rattle out of the pram fit (which I don’t normally do as I believe they do a wonderful job) they have agreed that they will scan me once three months from my radio has elapsed.
If you are unsure please ask them to explain why they have chosen to do or not do for you. Let them know how you feel - it could be that lots of people at your hospital feel that why and will continue to if the doctors are made aware that they are not explaining themselves very well. Unfortunately they deal with this day in day out and can sometimes forget that we don’t and that sometimes we need them to explain (in words of one syllable where possible).
Hope this helps
Regards
Helen
Dear Ruth when I say 'if I have to’I mean if I have symptoms which either I or the oncologist are really concerned about.I read that the radiation from a CT scan is 100 times that of a chest xray.By really concerned I mean something that is persistent for over 3 weeks,worse at night and the doctor feels it is unlikely to be easily explained without a scan.Each to her own but routine scans are not for me.Love Valxx
I was given a bone scan and ct scan because of the type of breast cancer I was diagnosed with…clear cell…I was told both were clear then had a lymph node clearance 2 weeks ago and was told on Monday my nodes were cancer free…I was jumping through hoops thinking all I need now is my radio…but yesterday at my appt with my onclogist I was told that there’s a cyst on my kidney and they need to do another more detailed scan of my kidneys next week…he thinks it will be best to do an op to remove the cyst followed by chemo…I’m devastated…I dont get why I was told my CT scan was clear and now this…I’m losing faith in my Doctors as in the beginning I was told my breast ‘cyst’ was nothing…sorry I’ve probably posted this in the wrong place
Hi Linda
Sorry to hear your news. Dont know if you remember me, im from Grangemouth and have had recent kidney removal
due to clear cell ca. Also had breast ca 3 years ago although that was IDC.
You are obviously devastated, it must have been a huge shock after being told your scans were clear.
I just wanted to say my thoughts are with you at this time and if i can be of any help whatsoever fell free to ask.
One of the ladies on this site from Falkirk and I are planning a meet soon for a coffee and a chat, if you fancy
joining us, even if its to get things off your chest, that would be great.
Good luck with your scan next week and take care.
Ann x
Interesting thread- just want to pick up on the secondaries question. I can tell you early symptoms of secondaries are pretty mild, I had no idea I had bone secondaries and maybe with hindsight my liver secondaries could have been picked up a bit earlier, Would i have preferred that ? probably slightly. Will it make any difference to how long I live? probably Not,
Prractice at my hospital is that everyone with invasive cancer gets a baseline CT before treatment, and after that only on symptoms, This seems reasonable. These scans are so damn stressful.
Hi everyone,
I was diagnosed with secs in lymphs from the beginning(Jan 2nd).Now in lymphs,liver,lung and spine.I had CT,MRI and bone scans within a few weeks of diagnosis and have had them all regularly about every 3 months.
It is very important to have them(especially for the lungs/liver) so they can put you on the appropriate chemo,which,in my case is managing my cancer and prolonging my life.
So Cathy,it does make a difference to how long you live.
Alli x
There is a big emphasis on early detection of bc (checking for lumps, mammograms, etc) at the outset, why then does it go quiet when the possibility of early detection of secondaries arises?
Surely the earlier a potential problem is detected, then the earlier adjustments to treatment (different chemo, change of medication) can be made? While the ultimate prognosis might not change, it seems inconceiveable that the timescale would not be extended to a greater or lesser degree, which, I imagine would be of no small importance to most patients.
It is customary in some countries to scan cancer patients at 6 month intervals, regardless of prognosis. This seems very sensible to me.
Are we being fed this line about ‘early detection (of secondaries) making no difference’ to save costs? Surely the earlier any illness is treated, the better?
I can only add my own scenario. I work for the NHS and much of what scans etc you are offered does depend on your PCT.
In our area the breast cancer treatment (luckily) is excellent. Everyone on dx is routinely given bone & liver scan and chest x-rays. A CT scan and ecg is then given prior to chemo (though i have to say my chemo regime was already planned prior to the scan).
I had Gr 1 with 4 lymph nodes involved. I have to agree the scans are massively stressful, but the reassurance when you finally get the results far outweighs the worry.
I think we are right to question everything, though I do believe too much information can be a dangerous thing?
I have seen a pattern emerging from talking to other ladies in my hospital (which is classed centre of excellence?) That if you do not have lymph node involvement then you are not sent for scans. I have been told one of my tumors was very close to chest wall hence chemo, radio, herceptin etc so it still seems a wee bit weird to me that if cells pass through the blood to other sites as well as lymph nodes- why us that have had clear nodes would not recieve scans? I really need to bring this up! Also Im starting Epi CMF next week and still cant really see how they came to the conclusion this is the best chemo for me. i find it hard to speak to anyone in the hospital- im trying to get over that . Also so achy at the moment and oh thinks its psycosomatic which it may well be but its not all that surprising. Feeling a bit in the dark right now.
I agree there is some inconsistency bewteen different hopsitals on scanning. Generally most oncologists don’t routinely send pateints with primary breats cancer for scanning, although some do where there is significant node involvement. In my own case I had AC chemo before surgery which failed to work and so at surgery I had mastectomy and still had 23 nodes with cancer. At this stage I was sent for scans which showed no evidence of metatstaic disease. This finding influenced my tretament in the sense that I went on to have 4 cycles of taxotere rather than 6 or more which I would have had if mets had been found
Now that I have regional metasatic disase (diagnosed three and a half years after primary diganosis) I get a CT scan every three or four months…which I find incredibly stressful. I have the sacns to monitor the impact of chemotherpay on tumours in my neck, lymogh nodes and chest wall and to montior for further spread. The scans show the extent to which chemotherapy is or isn’t changing the tumours.
I think people need to bear in mind that a CT scan will usually only show mets of 1cm or more and that a CT scan is only correct at the moment the scan is taken. Getting an OK CT scan otday doesn’t mean that a scan will be OK in 4 weeks time, so the reasurrance of a ‘clear’ CT scan is only short lived.
Most oncologists here and in the USA agree that routine scanning of people who have had primary bc is not neceesary. Finding something on a scan a littel bit earlier than it would have been discovered by patient reporting of symptoms will not make any difference to long term survival…although there are some oncologists who reckon that discovering bone mets earlier could mean earlier start to biophosphonate treatment which could prevent fracture from undiscovered bone mets.
As I was high risk of recurrence I had 3 monthly check ups for the first two years…I found onc’s prod and grope as reassuring as any scan (ie clinical exam of abdomen, liver and listening to lungs) and was happy not to be scanned. I ‘found’ my own regional recurrence (lump above clvicle) between appointemnts and promptly went to see consultant.
I don’t think routine non scanning is a cost issue…it seems to me to be based on sound medical evidemnce. There’s an excellent chapter in Musa Meyer’s book After Breast Cnacer on scanning and I recommend it to anyone who has doubts and worries.
There is of course the issue of whether in these days of ‘patient choice’ patiens who want scans should be graned them. Dilemma here and a tricky one…it strikes me that so many patients think so many odd and unfounded things about their cancers (eg. stress caused it; I can make myself better with a dairy free diet) that it must be hard for doctors to know when to go aong with pateint requests and when to stick to Trust policy.
Personally I think horace’s approach to scanning after primary breast cancer is spot on.
Its a hard pill to swallow that early detction of secondary breast cancer doens’t mean longer survival as early detection for primary breast cancer sometimes (not always by any means) can.