hi everyone, i was diagnosed on monday and the bcn has just ring to tell me that i have a 6mm lobular tumour, i was half asleep and didnt ask what that meant. i knmow they will know more after the mr scan and so far im being told i need wle snb and 15 x radiotherapy.
sue
Sue
I am so sorry that you have had this news. ‘Lobular’ means that it is in the lobules of the breast, as opposed to the ducts, which would be ductal. Lobular is less common. It can then either be invasive or in situ. Invasive means it has started to spread outside the lobule, or the duct. I was diagnosed with invasive lobular breast cancer, with a bit of ductal, in August. I had a lumpectomy (WLE - wide local excision) and a sentinel node biopsy (SNB) in September. I am due to start radiotherapy in December.
Your tumour is very small but as it is lobular, I expect that is why you are having an MRI scan, as lobular is less clearly defined than ductal, and the scan shows it better. I had one also.
If you have any other questions, ask away. You will get lots of help on here and you can send me a private message if you would like.
Good luck.
Ann x
hi,
I had lobular had mast with immediate reconn at north manchester, in may this year also had MRI, surgeon said it gave her a better picture of where the growth was,clearer dimensions, and they are also able to check other breast as lobular does not always show on mammo’s.
you are in very good hands at north, I had great support, still do, and no pain and very little discomfort after the op,and i am the biggest wimp ever…
take care xx
I had the same diagnosis, after a routine mammogram, last December and surgery in January. Unfortunately when the report came back it showed that the cancer was much more widespread than they’d thought it was and there were tumours throughtout my breast tissue. I was told that I needed a mastectomy. By then I’d done a bit of research and found out that lobular tumours 'hide’and there is a small likelihood that it can also occur in your remaining breast. I was devastated but also considered that I’d been really lucky that it had been found in the first place. I was offered a mastectomy on my ‘good breast’ and I knew straight away that I was going to accept it, I didn’t need time to think. It turned out to be the right decision as I had lobular cancer in situ in that breast. In the surgeons words "it was a time bomb waiting to go off. On the plus side there is no evidence that it has spread elsewhere.
My story sounds a bit pessimistic but that’s not my intention. It’s been a hard struggle and I’m still having problems BUT I’m here to tell the tale and I’m just soooooooooooo grateful that it was found. I’ve a bit of a weird sense of humour (fortunately my hubby and daughter do as well) and we’ve managed a few good laughs along the way.
Take care
Jan
I have lobular breast cancer and have had a mastectomy was refused an MRI scan, was also refused an ultra sound even though I have had two recent recurrences one on the mastectomy scar and the other on the scar line where my lymph nodes were sampled four years ago.
Another lobular lady - two very small areas which didn’t show on the mammogram but did on the ultrasound, also had a MRI scan. Needed a mastectomy (Dec07) because of the position of the lumps under the nipple and very small breast then 15 rads.
I now have a yearly mammogram and an ultrasound.
All the best Sue.
M x
hi magsi, mine showed as microcalcifications on mamo but not on scan! appaently it 6mm but im having mr on wed along with pre op BCN says its very very early but i will know more next week
sue
Hope all goes well Sue - I’ll look out for your news.
M x
I don’t come on the site as often now as its 4 yrs since i had lobular cancer and a lumpectomy followed by a mastectomy.
I have asked and asked and asked til I am blue in the face about not just having my routine mammogram but a scan on my good breast as I do worry it will come back, but no one wants to know. Did have counselling about a further mastectomy and just couldnt at that time face further surgery after 2 ops and chemo.
I think it comes down to money why they wont scan like everything does in the health service.
If it does re-occur either in scar, glands as i had SNB and 4 glands removed or in my other breast I would fight for routine scans not just the mammograms. Recent mammogram is fine but doesnt give me lots of confidence.
Rx
Hi Liverbird,
I think you are right about different standards of care depending which hospital is in charge of your care. My consultant surgeon was extremely rude to me when I asked to have my remaining breast scanned with ultra sound after I had pushed him to check my lymph nodes in the armpit next to mastectomy as I had a recurrence in the scar.
I had informed them over a year ago that there was a small lump in the scar. The oncologist said it was scar tissue and did nothing about it. I then noticed a lump on the mastectomy site. That was investigated and was a recurrence so I had that removed but they still ignored the lump under my arm. I persisted that they take another look and reluctantly a biopsy was taken which resulted in it being cancer. I only got an ultra sound on my lymph nodes because I asked but was rudely denied ultra sound anywhere else. It has been four years since my mastectomy and radiotherapy to chest wall.
I was classed as low risk and was prescribed Tamoxifen to prevent cancer occuring in my remaining breast. It is my gut feeling that the tamoxifen was feeding my cancer so I have stopped taking it. I have not as yet received any consultation on reveiwing my medication.
Take care of yourself and be vigilant of any small changes.
wishing you health and wellbeing
Mx
Hi. Can I please ask what leads you to think that Tamoxifen was feeding the cancer. I ask out of ignorance, I am nearing end of chemo and dont know what hormones I will be offered but would like to have all the facts to hand before agreeing to next treatment plan
many thanks take care xx
Hi TruffleShuffle
I read somewhere when I was doing some research after having my second recurrence confirmed that if the Tamoxifen was not working, ie. you developed a recurrence then possibly the drug was feeding the tumour as the tumour can adapt to accept it. I have not discussed this with a medical team as I am waiting transfer to another hospital.
There is a lot of information on the web take a look at this site
breastcancer.org/treatment/hormonal/serms/tamoxifen.jsp
copy and paste it in your search bar. Its qhite important information with regards to antidepressants. Personally I don’t think enough tests are done to establish which drugs will be most effective for us.
When you are faced with a recurrence it is a frightening experience as you lose your security in thinking that tamoxifen is going to give you at least five years cancer free. In my case it didnt.
We are all fighting for survival the sad thing is that once diagnosed it is a fact that your body is prone to host cancer, The BIG question is how can we change our body’s environment to make it an unsavourable place for cancer to grow?
Thank you, forwarded forarmed, I will read the thread
take care xx
Hello lobular ladies, I too was diagnosed with lobular cancer in a mixed tumour,along with invasive ductal, never one to do things by halves! When I was given my initial results after the ultrasound and biopsy I was told I had an MRI booked to check my breasts for lobular cancer as it wasn’t always possible to pick it up on mammo. However, the very next day I was rung at home to be told that I didn’t need this now as the they had had a meeting and were certain my mammos were good and the cancer was contained in the 7-9mm tumour that had been discovered orginally.
I do worry about this going undetected in the future and intend to harrass them at my check-ups about further ultrasounds etc.
Chris x
Looking at my pathology report, it turns out that I had invasive lobular and ductal and a bit of DCIS! Because I had lobular, they gave me an MRI to check the extent of it and to make sure the other breast was clear - but it did highlight other things which turned out to be nothing to worry about. I was lucky in that mine had been in the form of a lump which I discovered. I understand this is not usually the case.
I mentioned to the oncologist that I am worried that in the future a mammogram will not be sufficient to detect it and I was told that I will not just have the mammogram, I will also be examined and maybe have ultrasound scans. How long they will be that vigilant, I don’t know. Depends on funding, probably.
Ann x
Another lobular lady here! At initial diagnosis 4 years ago the mammo on my ‘bad’ breast suggested a 1 - 2cm tumour and this was confirmed by an ultrasound. I was given the option of lumpectomy or mastectomy and am so thankful I chose the mx as the tumour turned out to be well hidden and was in fact 4.5cm in size. I also had two smaller tumours in the same breast that hadn’t shown up at all before mx. Despite this I’m still refused MRI on my remaining breast and the last time I asked about it I was given a bit of a lecture about the dangers of ‘over medicalising’ people!! Can only assume it’s down to funding and all I can do is continue to be extra vigilant.
Carol x
Catfan, (love the pic of your cat by the way!) excuse my ignorance but as I was diagnosed from a routine mammogram I am not sure exactly what to look for with lobular cancer. Is more likely to present itself as puckered, dimpled skin or a lump? I have read it can cause a form of skin cancer too.
Chris x
Hi girls,
Yet amother lobular lady!!
I was originally dx with IDC which was only found because I discovered a large painful swelling which was apparently my body’s way of trying to rid itself of the ‘nasty’ lump!! After WLE and SNB I went on to have 2 more surgeries to get clear margins. They then found lobular cancer and I had a mx. I was straight away given an MRI to check the good side. Because lobular spreads out rather than forming lumps it is def more difficult to see on a mam. My ‘nasties’ amounted to 11cms in total and I can honestly say as a breast checker that I never felt any of it. I had no marks, puckering or any symptoms whatsoever. Luckily being a larger boobed lady it seems to have been contained there and my nodes were not affected. I am halfway through chemo and then will have rads. I am def asking to have a mx the otherside when my treatment is finished as there is a chance be it small, of recurrence on the other side.
Take care,
Jane xx
Hi Jane
Good to hear from you again. How’s the chemo going?
Ann x
hi ladies after my mri scan i have been diagnosed as tubular not lobular its in one spot and is 6mm
sue