Hi I was diagnosed with invasive lobular cancer end july I was given choice of WLE or mastectomy on 19/8. I decided on the latter to avoid further surgery if possible. just seen consultant today and told size of tumour was 4cm (original estimate from USS was less than 0.5cm) its grade 2 and 2 out of 15 lymph nodes were positive. I have staples out monday then see oncologist thurs re chemotherapy. I was shocked at such an increase in size. Am worried re the whole chemotherapy thing but know it is a means to an end. Have been frightening myself silly with all the prognosis for my type and stage. Just wondered if anyone has similar type to me and would like to share how their has gone /is going.
thanks Caroline
Hi
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best wishes
June, moderator
Hello
I have lobular cancer. I know a lot more than i did when i got it.
It is hard to guage. That is why you probably had an mri before you had mastectomy. It is sometimes multi focal as it was in my case, i had three sites. One of these wasnt discovered until actual mastectomy. The surgeon did not think my lymph nodes were infected from mri and ultrasound when in fact nearly all of them were. Lobular is apparently difficult to see and feel which it is why it is often caught later than ductal. The lump i had felt was bigger than estimated too. There is a lot of information on the American version of this site breastcancer.org. It has its own section there.
Well i have now had chemotherapy and will finish radiotherapy next week. It is not a walk in the park but it is as many women say on this site ‘doable’ Last chemo was in June and i have gradually regained my strength. I feel quite reasonable now. I am going back to work next week and have started exercising regularly again. The radiotherapy is not causing me too many problems. Everyone is different but there is lots of help available, particularly with chemo in managing any side effects you may encounter.
I am on tamoxofen and my side effects on that are not diminishing my quality of life in any way.
Hope this has helped you in some way.
All the best
Linda
Hi Caroline
I too had lobular cancer, thankfully only one area, so I was able to have a WLE. However, it looked 5mm on ultrasound, MRI etc, but was in fact 15mm. I think that is quite common with lobular cancer, as it doesn’t form a proper lump like ductal cancer does.
Good luck with the chemo.
Sal x
my cancer is ductal but i had an ultrasound on 20th may and told it was only 10mm… had my pre-op assessment that day and admitted for wle the following day.
my result two weeks later was that the whole area was 25mm including high grade DCIS… the invasive cancer was 19mm almost twice the size… in one day!!!
i think that USS/MRI is good but not 100% accurate (obviously) as it doesnt get all the views so although it is say 10mm wide and could be 19mm.
good luck with your treatment
lulu
Unfortunately this is all too common with lobular cancer. I too was dx with lobular cancer and originally told I had three small tumours and no evidence of node involvement on ultrasound. After op for mastectomy and SNB told there were two tumours 5cm and 2.5cm and 6/21 lymph nodes involved. It seems that ultrasound is notoriously inaccurate for those found to have lobular cancer. They never really know until they have operated. Likewise Grade etc until they have tested tumours. The slightly good news with lobular from what I can see is that it is most often Grade 2 and the pattern of developing secondaries seems different. ie tumours of the gastric system and bowel and ovaries.
Hi all,
There is a very interesting discussion going on here about lobular cancer you might want to look at.
community.breastcancer.org/forum/71/topic/739554
Linda