I finished my radiotherapy treatment in November 2018 and apart from itchy skin, did not seem to have any major problems however, I am finding that I get quite breathless at times and my energy levels are low. I have had a chest x Ray which is clear - a relief but can't seem to "get going". I have always enjoyed walking and am pushing myself to try and do 2-3 miles about 3 times a week but it is hard and so tiring. Has anyone got any suggestions?
I am also taking Ibandronic acid and Anastrozole.
I was recalled following a routine mammogram in August 2017, and was diagnosed with grade 2 breast cancer following a biopsy. Only one tumour showed up on the mammogram but a scan on the morning of my surgery revealed an additional 2 tumours which were later confirmed as grade 2 as well.
I don't know for sure but will always wonder if cancer was missed on my scan 3 years ago (they are 3 years apart in Wales). I had had nipple discharge 4 years ago which was investigated and the specialist told me he didn't think it was a problem, but offered to remove the area producing the discharge if I wished, or if anything further happened.
I was scared about surgery so decided to see what happened, which was nothing. The mamogram the following year didn't pick anything up, even though I told the radiographers what had happened before.
This year, a student being extremely thorough during my mamogram in August 2018 can be thanked and praised for positioning me so thoroughly (even though it was very painful), that the anomaly was picked up, at 1.6cm. By the time of my first operation, the stage 1 diagnosis had increased to a stage 2.
My follow up with the surgeon won't be until October 2019, and I won't be due another mamogram for another 6 months after that.
I don't know whether it is worth me asking about the first mamogram, or just trying to forget it, and now that my rads are finished, try and move on. What would it change if I knew for sure? (Apart from possibly not retiring from work while I was undergoing treatment, but having a few more years to get used to the idea).
Thank you that information is really helpful x
Mine was an "interval cancer" - i.e. one that showed up between mammos and 2 years after a clear one. I believe there are protocols now that interval cancers have to be reviewed. My mammo plates were reviewed but I wasn't asked to go to a meeting - they were just looked at by presumably someone who had oversight but I got a written response, which was that nothing was seen at the previous clear mammo, so nothing was missed. I was invited to view the plates if I wished but decided that I didn't need to do that, as I felt confident that a senior person had looked at the mammo and that nothing had been evident at that time. My cancer was quite small - 1.4 cm - so probably was not able to be seen 2 years previously. If you are going to look at the plates, maybe just ask to see the 2nd one, and also the most recent one, side by side. If you Google interval cancers and get to the protocols for the guidance of practitioners, it might help you know what to ask if you need to.X
I also had two mammograms that did not show any suspicious lumps however when finally getting a biopsy after 2nd negative mammogram I was diagnosed with ducal cancer which was a massive shock as the first mammogram had been done 2 years previously and I was told all was fine and nothing to worry about. It was only when the small lump started it itch that I went back to my GP who then rereffered me and subsequently got diagnosis. I have now finished radiotherapy and am due a mammogram review meeting shortly to see if anything was missed but am not sure what questions to ask or if I will be "blinded with science"? Has anyone been through one of these reviews?
A biopsy is not done routinely, if it's clear what it is on ultrasound or mammo.
From what I've seen here, mostly a biopsy is not necessary as most breast changes can be diagnosed without it. It's only if it is still not clear what it is, that a biopsy is done. Most women get the all clear from ultrasound alone.
Obviously, if you are still noticing changes & you're worried about it, then it maybe an idea to go back to your gp about it.
Hi im a male i recently developed man boobs with one breast 3 times the size of the other which has a hard lump the thickness of my little finger
the breast clinic did a manogram and ultrasound but no biopsy?
they said all was ok?
and they wont operate to sort the problem or check further as they say its just man boobs from my blood pressure medications especially the doxazosin it is well known to cause lumps and sometimes cancer
but i feel they made a mistake and its still growing
do you think i should ask for a MRI scan or at least a biopsy?
because male breast cancer is rare (but on the increase) they wont take me seriously
am i being paranoid or should i dig my heels to make sure ? Prevention better than cure and all that
best wishes to all
Kim's results showed the tumour was removed (ductal carcinoma 22mm, grade 3, aggressive). Lymph nodes, chest muscle and margins all clear. She will have 6 months of chemotherapy, followed by 6 months of radiotherapy, possibly herceptin treatment. Long road to come but also a long way travelled in the last few weeks.
Her cancer was in an unusual position, being on the inner part of the breast and on the chest wall - this contributed to it being missed at the first mammogram as the screening programme does NOT screen this section of the breast. The only way of seeing this area fully is an MRI scan.There are 500 new breast cancers each year at in our local area and 2 of these will experience what we have experienced, due to the limitations of the breast screening programme.
Looking back at Kim's films, there is an area of tissue which looks slightly different, however the mammogram readers (2 experienced radiologists), made the judgement that it was dense breast tissue and did not send her film to the Director of Screening for her opinion.
apparently its somewhere between 10 and 32% that are missed.... some because they are not seen on mammo, some because they have been missed on mammo and some because they occurred after the mammo was taken.
choccie if your tumour didnt show up on mammo i think it would be fair to ask for an MRI unless it was visible on ultrasound in which case a wholebreast ultrasound may be the best option.
I've been told that because the tumour did not show up on mammo, u/s or biopsy, I will have to have an MRI when rads is finished to make sure nothing else has been missed. Consultant and Onc also said I would not be suitable for mammo in future and would have MRI to check breasts instead of mammo.
I found my own lump, but it didn't show up on a mammogram even though they knew where to look. So had an MRI to check that there wasn't anything else there.
I wonder if that means I'll have an MRI next year as well, instead of a mammogram? I have to say I won't have any faith in them for me if they couldn't see something they already knew was there.
I wonder how many women are in the same situation of having cancers missed by mammograms and breast exams. I had a clear mamo in May 2010 and a breast exam by an oncologist a month before that. However, in June I was diagnosed with a primary recurrence and bone secondaries. I know they say mammos aren't infallible but it would be interesting to know exactly how many cancers are missed each year.
Just to let you know, My consultant at first that my lump was around 4cm, but after masectomy it was actually 9cm - so they are only able to give a best guestimate at that stage. I am to have MRI's in future to check my good breast given the denseness of it. x
Good luck with results today and good luck with the meeting. I found them very helpful and they were upfront and not trying to hide anything - its easier to meet and discuss than end up with reams of leters and correspondence. The director actually summed up our meeting in a letter afterwards which was helpful and useful for the record. x
Thanks for all your comments and suggestions, I'll print these off and put some questions together and try to get their responses on here after the appointment. Kim also gets her results from the op tomorrow at 4pm, so keep your fingers crossed for us!
With regard to the size of the lump - that's just what was quoted to us by the consultant when he measured the raised section of lump at the first appointment.
Thanks again for all contributions.
not sure what happens in England but in scotland you get sent out a booklet when you first attend for screening which states taht like all screening programmes the breast screening programme is not 100% perfect....
this is the booklet that gets sent out with appointments here....
also in respect of digital mammography... here we use films regardless of whether your in a mobile unit or come to the static unit.... we dont have a digital machine in the screening unit... yet! however its the same radiographers that do the mammos and the same radiologists and clinician that read the films.... all are double read and if there is any differing views then a 3rd comes in to arbitrate and give their opinion.
generally for a 1st screen you would be more likely to be recalled even if they think its maybe nothing as we havent seen your breasts before.... if you have more films and its considered normal for you then you generally wouldnt be recalled for the same thing again.... so you maybe want to ask why they didnt review it as a first film and nothing to compare it to.
in respect of the increase in size i very much doubt the cancer grew 3cms in 3 weeks.... radiologically is just an estimate as some cancers which appear small turn out to be larger in reality and ones that look larger turn out to be smaller in reality... echos are often seen or not on ultrasound which can make the size seem to vary (mine was less than 1cm on US but 2.5cm including DCIS on removal the next day).
as some of the others have said you still have to be vigilant yourself... but even then we sometimes dont notice changes ourselves despite having a good root around.
in terms of not seeing things on mammo women with denser breasts dont show up so well on mammograms and younger women do tend to have more denser breasts and this one of the reasons they dont offer screening under 50 (although in england i believe its going down to 47).... there is a grading system for the denseness of breasts so it might be worthwhile finding out if you have dense breast and if your follow up will still consist of mammograms or will they offer MRI instead which has found to be more effective for women with dense breasts.
ill be interested to hear what the director says.... remember write all your questions down before you go and take notes so you can refer to them later.
I had a mammogram in a mobile unit at the end of November 2009 and by June 2010 I found a lump. When biopsied it was found to be ductal cancer. It should have been seen on the mammogram but they advised that they were unable to spot.
I think there are many of us that will not trust the mobile units going forward.
If it was me speaking to the Director, I would want to know how fast growing the cancer was and how it had managed to get to that size so quick, why it was not showing on the scan and if they were not too sure if there was an abnormality why there were no further tests done.
The NHS will not be able to improve the statistics for cancer if they continue to ignore abnormalities. I would certainly like to know what the guidelines are and why your partner fell into these guideline
Hi Benita - I had a routine mammo at screening unit in March 2009 which was clear. In Jan 2010 I discovered a lump in my left breast and was referred to hospital breast unit. I had mammo, ultrasound scan and core biopsy, all of which were clear. Had haematoma after biopsy and was told to go back for another 6 weeks later as the 1st5 one had been contaminated. When I went back in March Consultant said that there was no need to do another biopsy as they had got some tissue which was clear and mammo and u/s were also clear. He also refused to remove the lump.
I asked my GP to re-refer me in November 2010 as lump was still there. I had another mammo, ultrasound and biopsy and again all were clear. Different consultant this time who decided to do WLE to remove lump and guess what - it was a 17mm tumour which had become invasive. I then had to have a Sentinal Node Biopsy to remove some lymph nodes which, luckily, were clear.
If 1st consultant had taken the same decision as 2nd consultant, then the tumour I had may not have developed into an invasive one.
I have asked the question "why" and been told that "unfortunately we do sometimes miss something and can only apologise".
In my opinion, if there is a lump there it should be removed and tested, not just left to an individual consultant's discretion!
Incidentally my tumour was ductal - not one of the ones which is difficult to diagnose.
I go along with SarahAL. I strongly suggest you write all your questions down and take notes of all that is said. There could be some fear that you may want to take matters further.
Best of luck.
Hi Benita, I have recently been dx with bc. I thought I had found a very small lump in my breast so my gp arranged an appt with the breast clinic at the local hospital. The mammo didn't show up any abnormalities, I was then given altrasound and the Dr did find a small lump, which he belived was a cyst but just to be sure he carried out a fine needle aspiration, and unfortunately I was dx with bc within the hour. I don't know why they went ahead and did the different test but I am grateful that they did! The consultant did say that some cancers are more difficult to pick up than others, and also the type of breast tissue you have can affect the outcome of a mammo. Sending you and your partner kind thoughts and cyber hugs. Donna xxx
Hi, just to let you know I was in exactly the same postion. I had a clear mammagram in December 2009 and found a 'lump' in January 2010 i thought it was nothing due to the clear result but went to my GP anyhow. Luckily for me he referred me to the Breast unit as he could feel 3 lumps! I had the usual ultra scan and biopsy and it was confirmed as cancer. I too questioned why had it been 'missed' in fact after my mastectomy the tumour was in fact 9cm (yes 9!)
I was given an appt with the Director of screening and she went through the images with me, showed me the 2009 ones and also the 2006 ones, as they use previous mammograms to compare any changes - as well as comparing to each breast.
I have dense breasts and when I looked at the images there was no indiation whatsoever that there was anything there. Like you say the images are checked my two radiologists anyhow and on both 2006 and 2009 there was nothing to be suspicious about. So in effect I was just one of the 10% of people whose cancer is not picked up via screening.
Questions I asked where what do they look for?, (when you are screened your breasts are squashed two ways and they compare both images) - a tumour shows up as a white shadow on the screen. You should ask to see the images and ask them to talk through with you why they felt it wasn't necessary to recall your partner.
There are also types of breast cancer that don't show up on mammograms so it may well be that is the type your partner has. so again ask this question.
I was not aware that breast screening was not 100% reliable and to be honest lulled myself into a false sense of security - you need to be check your breasts regularly too. I have now told all my friends and colleagues this.(anyone who listens too).
On a postivie note 90% are picked up which is brilliant for us ladies who qualify for breast screening, but sadly there are a lot of ladies who do qualify who don't even attend in the first place so many many more lives could be saved
sorry to rant x
I was thinking something similar to Jeannie, ie it is interesting that you are seeing the Director of Screening, possibly they are concerned you may make a complaint. Jeannie's suggestions on questions are very sensible. I would suggest you take notes when you are there, and ask them to slow down, repeat things etc if they are unclear or you don't think ti makes sense. If possible I would avoid being too upset/angry, bu just ask calmly everything you would like to know.
Also I suggest ask who you can contact if you need anything further (as you probably will realise after that you have other questions) You can then go away and think about what they have said.
You may like to ask that minutes be taken and the whole process to be documented so that in the event of further action you have a full record of your case. Good luck. X
Hi, I was due a routine mammogram (turned 47) but somehow letter didn't reach me. Felt lump and went to GP saying "shouldn't I be due mammogram, want to check this out." GP said that I should be referred because routine mammogram and one they would do if looking for something specific were not the same. My bc not seen on mammogram, ultrasound only to check out a cyst but slightly abnormal area biopsied and was bc.
Point of my ramblings are: General mammogram may not look as closely as one to investigate a specific lump. Some cancers seem very difficult to spot on mammogram or even ultrasound. Breast tissue is dense on younger women and this may make it even more difficult. It seems understandable that you want to know how this could have been missed is a reasonable question but I suspect some cancers are hard to spot.
Best wishes to you and your wife and wishing her a speedy recovery.
If you are seeing the Director of Screening (I cannot imagine this is normal practice) I would concentrate on asking why this has happened. Relate most of your questions to the screening procedure and guidelines. It was very honest of your consultant to admit that there was something abnormal on the original mammogram and that it happens to 4 or 5 women per year. This shocks me. I also didn't know breast cancer could grow as fast as 3cms in 4 weeks. I would be questioning this. I am a four years misdiagnosed BC lady who is fully aware of how much denial goes on when things are missed. I hope your meeting goes well and you get satisfactory answers. This will be helpful to you moving forward. Good luck.
'Yellow', your post caught my interest. I was called to a mobile unit for my 1st mam in March 09, just after my 50th. It came back clear but less than 2yrs later I found my 'bad-boy' & am just waiting for my results following WLE & SNB. I know that the two (mobile unit v time span) might have no significance at all but your comment about old film etc certainly made me think.
I think then I'd want to know:
a) what type of cancer it is
b) was anything detectable on the mammogram at all even if it was thought to be of no significance
If your partner had symptoms prior to the mammogram then that's a different story altogether.
Sometimes cancer such as lobular is only detectable using MRI scans and so they tend to be quite large once detected.
Hi, it was at a mobile screening unit.
Was your partner screened at a nhs mobile unit or was she screened in a breast unit at a hospital? Mobile units tend to use film which technically is outdated and has now been superseded by digital machines which are far more accurate in detecting breast cancer. My first nhs screening was carried out in a mobile unit in 2005 and the results came back clear. Within 2 & Half years I developed a small tumour which I discovered myself. Over the past couple of years I have researched everything concerning the nhs screening programme including the use of old machines in mobile units and the 3 year interval post 50 years. I believe that these two factors contrabuted to me developing breast cancer in the first place. Knowedge is power and I have therefore made sure that all my female relatives and friends are aware of the short comings of the nhs screening programme. Although Mammos cannot prevent cancer and cannot save lives once an invasive tumour has developed, Digital mammos have the accuracy to detect dcis which is a very early pre-cancer and can nearly always be cured.
Lobular cancer can be missed v. easily.
The question would be:
-If some cancers are KNOWN to be invisible at times on a mammagram why aren't other tests routine? (partic if something is 'abnormal'
-Isn't the mammagram used to show up things that are 'abnormal' and then these be acted upon?
On a financial side (forgive me if this sounds a little cold but this is what they have to think about)
- Isn't it cheaper to follow something thru' straight away rather than leave it and end up with a more expensive treatment due to the nature of the cancer?
- Equally, what is the point of spending valuable money and time on experts on if 'abnormal' things are ignored?
Hi, we've not bee told what type of cancer yet, I think as it's been a whirlwind we didn't really ask as long at the last appointment as we just wanted a plan of action.
This was her first routine mammogram, age 52.
I would be asking exactly what the government guidance is and how open it is to interpretation.
Did your partner suspect something prior to her first mammogram or was she having the first routine mammogram?
Do you know what type of cancer she had? For example, I had lobular cancer which is notoriously difficult to pick up on mammograms.
My partner had her first mammogram on 2nd November. This was returned as clear.
A week later, she noticed a pea sized lump which continued to grow, on the inner part of her right breast. Booked doctors appointment and referred to a breast consultant, and was seen on 21st December. A further mammogram, ultrasound and biopsy confirmed cancer the next day. The tumour grew 3cm in 4 weeks. She had a quadrantectomy on 7th January, so things have been fairly quickly dealt with.
The counsultant informed us that looking back on her first mammogram, there was a definite sign of something abnormal 'but the government draws a line on what should be checked'. He explained that this happens to 4 or 5 women a year at our local hospital. He explained that 2 radiographers look at all results.
We were automatically given an appointment with the Director of Screening for this week.
My reason for posting is to ask you all if you have any suggestions for the type of questions we should be asking at this appointment.
Thanks for any replies.