After reading quite a few postings about secondary breast cancer. It is becoming obvious to me that the medical profession have no idea who might already have secondaries and who hasn’t.
Therefore, would it not be wise to have all ladies checked after treatment to make sure there is no secondary spread.
Secondary breast cancer was never discussed with me at my diagnosis and I have had to come on this site to find out what the symtoms could be.
I know there are discussions going on at the moment with ladies who have been diagnosed with secondary breast cancer on this website.
Surely finding the spread straight away must help the treatment rather than waiting a couple of years down the line and finding out.
I have posted this under secondary breast cancer but feel all suffers would be better served by have a CT Scan done straight away.
Jugsy
Jugsy
I quite agree with you - about having scans. But at the end of the day, I think its all down to finances!!!
They’ll fork out when symptoms appear.
I am extremely embarrassed that I was so ignorant about secondaries and have been so angry about the lack of scans. Its all very well having routine mammograms but …
I have a 5 month old baby and was given my dx of bone mets just 2 days after having him!
Needless to say, I want everything that is available to prolong my life.
Anne xx
Hi Jugsy,
I quite agree with you. I lost my Mum to secondary breast cancer 4yrs after her initial diagnosis. I was diagnosed on 4th Dec 07 and would be reasured by a CTscan after my rads.
jackx
Anne,
I have read so many post on the secondary site from young women like yourself with small children suddenly finding out it has spread. They start mammograms at 50. I think CT scans should be given automatically to anyone under forty diagnosed with B.C.
I myself am 58 years old but I cry reading the posts from young women like yourself.
Women are not being made aware of what they should be looking for.
When I go to clinic for a check up they have all on to read my notes properly let alone check for secondaries. Without a CT scan I feel some of my visits are a waste of time.
My Oncologist examined me once feeling my liver and collar bone and glands in my neck but I still feel a CT scan would show anything sinister and could be treated earlier. I am not totally sure it is down to money. I personally have never been told anything about secondaries at my hospital. I get a feeling that no one wants to talk about it.
I listen to archive BBC programmes from time to time. I listened to a programme not so long ago. It was Woman’s Hour and a lady had been diagnosed with B.C. and with bone mets ten years earlier. She said that she was sat in the studio that day totally pain free. Had she known the treatments were so good she would not have gone to pieces with her diagnosis ten years earlier.
I do wish you all the very best for the future.
Julie x
Hello,
Screening for possible secondary breast cancer is a difficult debate but there have been several large studies which have shown this is not useful in finding further spread of the cancer and doesn’t improve overall survival. CT, MRI and ultra sound scans are very useful tools in helping to diagnose cancers and secondary disease, although they do have there limitations. They can only detect a tumour once it has grown to about 1cm in size. The problem here is once a tumour is about this size many people are already experiencing symptoms. Scans are also most useful in helping to identify a cancer when you are looking for a specific problem rather than a general body view and trying to spot changes which may or may not be due to a cancer.
BW’s
Tara
Clinical Nurse Specialist
Hi Julie
My secondaries came back nearly 10 years after my primary (aged 40) and having a CT scan at that time wouldn’t have shown anything amiss.
I think having the awareness of the signs and symptoms of secondaries (not only for us as patients but also GP’s) is one way to make sure that you’re seen by a specialist as soon as possible.
I was never made aware that I had the potential for secondaries but, with hindsight, I think it was probably always on the cards given the type of breast cancer I was diagnosed with, my mum dying in her early 40’s of it and my aunt (in her 50’s) dying of it three years after we’d both been diagnosed at the same time. I think what delayed my re-diagnosis was the fact that my GP insisted I stay on Tamoxifen for those 10 years given my family history - whether it was that or not who knows
Pinkdove
Hi everybody
Interesting thread - have been diagnosed twice - two primarys, same breast, eleven years (to the day!) apart. First time round only offered mammograms, but this time had a CT before mastectomy and then recently, after chemo finished, sent for PET/CT scan. From what I have been told, this is a “belts and braces” scan which shows much more than a CT.
Was told last week that I will still have mammograms to other breast, but can’t say I’ve got much faith in those, as second cancer was not picked up during two yearly checks.
Cheers
Anne x
HI Anne
I agree with you about the mammograms - I’ve been on the mammogram ‘yearly circuit’ since I was 40 because of my family history and since being diagnosed in 2004 with secondaries it didn’t help as it’s not in either breast!
I’ve also heard that PET scans are really good - unfortunately we haven’t got one in our hospital plus I understand they’re a lot more expensive than CT scans (which I’ve got one tomorrow!)
Pinkdove
Hi All
Well I was dx on 16 July with bc, and was told they were doing bone scan, mri scan and ct scan. Had no symptoms or feeling ill. And unfortunately 10 days later told that ct scan had shown that had spread to my liver. So not sure why some areas just do them as matter of course, as I had not felt ill or looked ill, and my onc, seemed quite surprised when he told me, as he said you haven’t complained about being ill.
It is very very hard when there are children involved. My youngest was only 8 months old when I was diagnosed and my little girl 3. Whole world fell apart and now I will take anything and everything to try to give myself the best chance to see them grow up.
I think everyone should have scans, if it picks up any early signs, got to be for the best.
Love
Dawn
x
I just want to add another point to my thread.
My father developed prostrate cancer in later life.
He had surgery and radiotherapy and after treatment a bone scan.
I think prostrate cancer tends to spread to the bones.
He was reassured by the bone scan after treatment.
This treatment was given over twenty years ago.
We all know that B.C. has four places it likes to travel to.
Bones,Lungs, Liver and Brain.
If the CT scan specialised these areas then I think patients would feel re-assured.
My greatest concerns are for people who are being treated for primary b.c. and they also have secondaries which will proabably go undetected until symptoms appear.
Jugsy
Hi all,
I am 41 and first presented with “gallstone like” symptoms for which a routine Ultrasound scan was booked ( a 4 week wait) in the meantime I found a lump and was in hospital within a fortnight for lumpectomy and sentinel node biopsy, No affected lymph node found BUT there was some concern of a few cancerous cells found in a blood vessel. The ultrasound found numerous secondaries in my liver, I have had since had chemo and am doing very well at present but I still think I needn’t have had the lumpectomy if they had carried out a CT or ultrasound earlier.
Allie
I was led to believe that it makes little difference when secondaries are discovered and treated, survival times are similar. Treatments are basically the same whatever the secondary spread is. If you are treated for a small secondary tumour early, say, you have still used up one of your ‘life lines’. I was diagnosed with bc and (extensive) secondaries to the liver at the same time and my treatment is the same as I would have got if secondary spread had been discovered earlier. There is little ‘extra’ that can be done to treat early secondary diagnosis (maybe treatments like RFA for liver mets, but this will not stop the disease returning). I guess the argument would be that your quality of life will be better if secondaries are treated at an earlier stage but you are still going to reach the point when you have used up all the options available to you. Another point is that there are very often no symptoms whatsoever to suspect secondary spread (especially in the cases where initial diagnosis is Stage IV). I know of women who have been diagnosed by fracture (then found bc and bone spread). I found a lump in my armpit by accident which, within 2 weeks, led to my Stage IV diagnosis. I had no other symptoms which would have pointed to extensive liver disease. I was 45 at the time with 4 & 5 year old children. I am now 48 and my quality of life is so good (despite constant treatment for two and a half years) that I still find it very hard to remember that I am actually dying. (Which presumably improves said quality of life!) The liver mets, unfortunately, are also still going strong.
Jenny.
Hi All
This is an interesting thread- i was diagnosed in feb 2003 (age 38) had WLE, FEC, rads, zoladex and tamoxifen. Prior to treatment I had scans nothing was found. In August 2005 I had pains in my right side that would go away so I had a bone scan and a CT scan - nothing was found. I was very happy about that…BUT When I actually had secondaries they were really detected by a jump up on the tumour markers. Obviously they were there all along but being kept in check by Zoladex and tamoxifen. So I am not sure that CT scans post treatment would help, but of course this is just based on my experience . But prior to treatment definitely, you would think that makes sense.
best wishes
Cathy
Hi girls,
When I was first dx with breast cancer I did have a bone scan, chest xray and liver ultra sound as I had more than 4 lymph nodes involved.
Now that I am being treated for secondaries I don’t have regular scans as my Oncologist has the school of thought that I will know something isn’t quiet right before a scan would show and Its very true in my case…
Regular scans are not going to stop the cancer returning but as Pinkdove wrote…
“I think having the awareness of the signs and symptoms of secondaries (not only for us as patients but also GP’s) is one way to make sure that you’re seen by a specialist as soon as possible”
It is good for us all to be aware of scondaries and the symptoms, be vigilant, take responsiblity and trust our knowledge of our bodies and how we are feeling.
Hi guys
I’m with the pro scan brigade. I feel like an idiot. I had a double mastectomy in oct 03, chemo and tamoxifen and didn’t really think about follow up diagnostic tests until my long standing back pain (of about 20 years ) flared up again in august 06. I wasted time and money going to chiropracter for some months before going back to my G.P. I began to suspect mets then and evidently so did he. It was only then that it occured to me that apart from the blood test (chemo marker) results which my consultant told me were not very reliable, nothing had been done in the way of checking to see if the chemo had worked or not. I put it to my G.P. that one must come up with some symptoms in order to have further diagnostic tests. He agreed. There is the answer. If only I had thought of it before. I had allowed myself to go along with the “no news is good news” attitude that everyone seemed to have, health professionals, friends and family alike.
Now, I’m no doctor (actually I am a nurse) but surely early diagnosis gives one the best chance? Isn’t that what we’re told? Or isn’t it true for secondaries? If not, the implication is that once secondaries are diagnosed, it makes little difference to ones survival rate whether one gets treated sooner or later, or, as the popular medical phrasiology goes - it doesn’t affect the outcome. If this is true, will somebody please tell us. We could make “informed choices” about accepting further treatment.
I must say I am amazed to read the comment by the clinical nurse specialist yesterday saying that once a tumour reaches 1cm in size, many people would be experiencing problems. I simply don’t believe it. We don’t know what’s going on inside our bodies. I remember during my nurse training an xray of a young woman who had come into A&E with a fracture. She had cancer in almost every bone and she didn’t know it. I myself have had it in both breasts, now its in my sacrum, pelvis, spine, shoulders and lungs and apart from the old pain in my sacrum I’ve never felt any of it. Its the treatment which has caused my suffering so far.
I fully understand that scan results can be inconclusive, unreliable, open to interpretation and expensive. However, the wait and see approach seems crazy given that its the secondaries that are going to kill you and huge money has been spent on the initial diagnosis/surgery/treatment.
Cazzy
Hi Everyone
I was diagnosed with lobular breast cancer back in 1999. I had 6xcmf & doxerubicin, mastectomy 25 radiotherapy followed by 5 years tamoxifen and zoladex.
I was aware of the “usual places” that BC like to move to…bones,lung,liver and brain and seemed to be doing fine…no symptoms. But in October 2007 my tumour markers were raised so I was given a CT scan and found that my BC had moved to my Ovaries(6cm) and Omentum(3cm) Am now having Taxotere x6 (have just had No3) and am now waiting till 30th for another CT scan to check the progress.
I had no symptoms of anything being wrong, but then again I didn’t know what symptoms I should have been looking for. I agree with Cazzy the wait and see approach “is crazy” I think Ct scans done on an annual basis would be a good idea.
Ann
Cazzy, I am afraid you are right. The point is that once you are diagnosed with secondaries, you can’t be cured. So you have only a finite number of treatment options and really, which option and order you use them in, makes little difference to the outcome. If my extensive mets had been discovered earlier, I would still be at the same point now (or worse) regarding options available to me now. This is why early detection of BC is so important. It can be cured, in many cases, before it has spread to lymph nodes or further, but after that, you have cancer cells circulating in your system, just waiting to settle into a comfy home. Micrometastases are difficult to pick up on any type of scan when they are so small, so there is no fail-safe way of knowing ones metastatic status until (as the nurse said) they have reached a size to show up. Also, many people can have quite large tumours and experience no symptoms.
Since my diagnosis, I have had a scan at least every three months, to track the efficacy of my treatments.
Jenny
Yes I think Jennywren and the Clinical Nurse Specialist are absolutely right. Regular scans for everyone would simply not make any difference to survival. Scanning is costly and there are many better things to spend tight resources on for cancer patients (new drugs for example). Scanning also induces unecessary anxiety and any scan is in any case only a measure of what is visible at a particular moment in time.
I think maybe there is some inconsistency in apprach to scanning at primary diagnosis. For many early breast cancers no it isn’t necessary, but I think they may be a grey area around who is high risk (which is why younger women particuarly and people with a lot of lymoph node involvement may get scanned at primary diagnosis.) I had pre surgery chemotherapy for locally advanced breast cancer and wasn’t scanned but then when surgery revelaed I still had a lot of lymph nodes with cancer I did have CT and bone scans because there was high possibility of secondary spread then. Scans showed NED but I still had further chmeotherpay. I was happy over the next 2.5 years not to be scanned…had 3 month check ups. I didn’t have tumour markers taken because mine always showed normal even when I had active cancer. I was diagnosed with a regional recurrence in my chest wall and neck 9 months ago (I found a lump myself between appointments). Since then I have had 3 CT scans to check both the efficacy of treatment and for further spread. My scans are still not showing mets in major organs though it is pretty certain that micrometastes are in my body.
This is all hard hard stuff and feels counter intuitive at times. Chapter 6 of Musa Meyer’s book After Breast Cnacer provides an excellent explanation of why regular scans and tests are not appropriate.
Jane
HI everyone
I have read your posts with interest because I was dx in 1993 with stage 2 tumour and no lymph involvement. I took tamoxifen for 6 years and continued to see the surgeon privately every year for a “comfort blanket” check up. The visit consisted mainly of a chat and although he did feel to see if my liver was enlarged he never suggested blood tests or scans to check if everything was ok. He did say that the cancer could come back but I always felt that after 10 years he was quietly confident that I was cured. However in 2006 I started to suffer from pain in the groin ( typically one month after my check up) and it took my GP 5 months to discover that it was bone mets in the pelvis. I was visiting the GP every three weeks and because I looked well (ha ha) and was still managing to go to work dosed up with anti inflammatory tablets she told me that she had no idea what it was( blood tests were ok) and suggested I saw a physio. Fortunately the physio told me to get my hip x rayed and the rest is history.
The shock of going from “cured” to stage 4 and incurable is as you are all awareindescribable. The Oncologist told me that I had been unlucky. A cell had obviously escaped, probably even before my mastectomy,travelled via the bloodstream and lain dormant for 12 years. Apparently they have no idea what triggers them back to life. So I suppose my reason for adding my story is that in my case a scan at primary dx would not have revealed anything. Also my tumour markers have not been an indication of any problem.
I am now 60 years old and although I will not have my normal life span ( to quote the oncologist) I hope to be around long enough to see my grand daughters grow up but like Jugsy, I weep when I read how many young women are now being dx with both primary and mets. I have two daughters and a family history of bc although I do not carry the BCRA1 or 2 gene. There does seem to be more treatments available and many women are living beyond the 2 to 3 years that is often quoted.
Best wishes Barbara
Hi
I had lobular breast cancer in 1995 and was on tamoxifen for near enough 10 years (which I’m convinced slowed the inevitable). Was diagnosed with liver and spine mets in late 2004 (also have a strong family history and waiting for my genetic test to come back).
I come from a different angle (having gone nearly 10 years in remission) in that the anxiety of having yearly scans would have affected my quality of life during that time. I wasn’t told that I was at high risk of developing secondaries but back in 1995 it was a bit different. It was bad enough having yearly mammograms throughout those 10 years and the ‘am I alright, am I not’ scenario. I also believe that scans don’t always show up things in the early stages, as a lot of posts on here have shown, and developing pain in my spine was my first indication but the worst thing of all was the lack of knowledge that my GP had in realising that I could potentially have spine mets and the delay in referring me.
I have to have 3 monthly scans now and have had for the past 15 months and the anxiety that creates is enormous but my oncologist is brilliant and she either rings me that day or sees me the following day with my results as she knows how anxious I become - and it’s not only me she does that to so I think I’m pretty lucky having such an insightful oncologist.
I do agree that greater awareness is needed, not only with secondaries but also with regional recurrences and it has to be through GPs as well as us as patients.
Pinkdove