Hi…I was diagnosed with lob/c in August. I had biopsies last year that came back benign but I was given yearly check-ups just to be on the safe side. Had cores done this July following mam which showed a shadow. I was told my tumour showed to be around 5cm (although due to inflammation it would probably turn out to be smaller) and I had a mastectomy last Wednesday. Two days after my diagnoses I was given a total bone scan, liver and abdominal scans, chest x-rays and every blood test you could imagine. Thank goodness they all came back clear. Apparently my liver was in top condition which is surprising the amount of pinot grigio it has had to deal with lately!!!
I also had pain for the last 18 months…on and off…but in the last 6 months it was quite painful at times. My breast changed shape - the lump was behind the nipple which made the top of my breast protrude.
This thread has been fascinating…we certainly are a hard lot to detect aren’t we?
I am currently awaiting my results following my surgery, and trying not to spend too much time thinking about what might be.
Hi all,
just come across this discussion and thought I would have my say lol.I was dx in april this year after being sent for a mamagram and ultrasound ( i had previously been on antibotics for a supposlely blocked milk duct,the doctor assured me it was nothing sinster but i knew, we had just lost my dad to kidney cancer and two of my aunts and one cousin had had breast cancer) .Any way so far I have recieved very good care like most lobular ladies my lump was big 5 cm but I have just finished 6 months of chemo and the docs are happy with how the lump responded to the chemo.so far I have had 2 breast mris,2 liver ultrasounds and I have a bone scan tomorrow ,Im awaiting the date for my op ,I asked my consulant could have a double mas as Im 43 and the odds of reoccurence are higher and he said he did not think this was unreasonable request.I live in essex and talking to ladies at my chemo ward they all agree its not just where you live but the doctors and nurses play a big part as well some of the ladies i spoke to have had mixed reviews with regards to the care and info they have received.
I think you’re right I cannot fault the care I have. My lump, well I had two (just to be sure) 39mm and 8mm were removed ny mastectomy. Later I found I’m a BRCA2 “mutant” so maybe I should have gone for double mast. They mentioned doing chemo first but opted for op. Good luck for the bone scan let us know what happens.
I am also in Essex Mandy. I was offered chemo first to shrink the lump but I decided against it and went straight for the mast without recon. I was also treated for an inflection with anti-biotics as the nipple was so inflamed, but in my case I believe there was an infection there at the time and the tumour was actually present behind the infection. I had to have mast because of where my lump was(directly behind nipple) and it would have been pointless doing a lumpectomy. My surgeon has left the skin though, ready for a recon when (and if) I am ready.
Can I ask, did you have the double mast?
I am awaiting results now as I only had my op ths month
have posted on here before but just wanted to update. Had WLE for my 2cm lobular 4 weeks ago. Not clear margins, so had re-exision last week. Will find out results next week! Next step chemo, then rads plus hormone thingy.
Pheebster and Mandy, so glad your results were clear, I am also in Essex!!
BRCA2 is one of the known hereditary breast cancer genes. Ins ome families this mutates and can increase risk of breast cancer, ovarian cancer and in my case pancreatic and some skin cancers. There is a 50/50 chance of this being passed on to children. My father died of pancreatic cancer 19 years ago aged 45. His brother, myself and both my sisters have all been tested and carry the faulty gene. You think one of us would have avoided it! One of my sisters had breast cancer 13 years ago aged 29 and coz my dad had cancer at an early age we were referred to genetics.
I am worried for my daughter…my nan died of liver cancer (age 90) my mum had bc (age 47) she is still well, nearly 30 years later thank goodness, and now it is my turn.
I’m so worried for my little girl, but I am also hopeful that every day diagnosis and cures are getting better and better. I will fund whatever screening is available for her as soon as she is old enough; it doesn’t seem much but what else can we do?
I know its a worry.I was told they would normally start bc screening when your children reaches the age five years younger than when you were dx. I actually started mammograms at 35 coz of my sisters dx. My daughter is 16 in January but we haven’t told her about this gene yet. exams this year don’t want to give her anymore worries at the moment and theres nothing she can do, apparently it has to be her choice to go for genetic testing. so were advised to maybe wait until shes over 18. Have you not been offered genetic testing?
Pheebster, Mandy and Tracey I’m also an Essex girl!
I think that one of the most worrying features of lobular cancer is not only that it doesn’t really show up well on mammogram but that it often grows quite big before you get any signs or symptoms at all. Mine seemed to appear overnight, a 5cm thickened area with orange peel skin, pain and a distorted nipple… at the time I was being ultra careful in checking my breasts as 2 friends had been diagnosed within the previous 8 months. I had a mastectomy and ANC but unfortunately I had 10 lymph nodes involved, so it must have been there for quite a while!
Both my grandmothers died from bc, they were diagnosed in their 60’s, which apparently isn’t significant genetically. My grandad died in his 60’s from liver cancer and my mum had pancreatic cancer diagnosed at 62, fortunately 10 years later she’s fit and well! There is so much cancer in my family, either that or heart disease but no-one (except me) has ever thought my family history to be significant!
Starting to feel outnumbered, I’m from Northumberland.
I know what you mean re lobular cancer my lumps (ihad two just to make sure) appeared 1 month after my mammo and I had received the all clear, just goes to show. I had 19/19 lymph nodes involved. Secondaries in bone and peretinium wall (amazing how you find out about bits of the body you didn’t know you had!) it was also found in ovaries and tubes when they were removed.
Lynne, I was wondering if I should ask for the BRAC2 test as I have had melanoma and breast cancer, but there is no family history of either. I have two daughters aged 10 and 14. My husband died last year of oeasphegul cancer, and there is no history on his side either. Guess we’ve just been unlucky (to say the least!). So sorry to learn you have secondaries, are you currently having treatment?
Claire, glad to hear your mum has done so well, pancreatic cancer is one of the more difficult ones to treat, good for her.
My lump had over lying dimpling of skin, which is what drew my attention to it. My GP said she would lay money on it being a cyst, think she should pay up now!!
Hi Lynne,
Sorry to hear about your secondaries. How are you coping?
That’s the other thing I’ve read about lobular bc (though can’t remember where), it seems to favour slightly different sites to metastasize to. I know of someone else who’s had peretoneum and ovarian secondaries.
When I was diagnosed I had a hotspot on my hip, I had an MRI and they decided it could be a bone cyst but weren’t really sure. I’m currently experiencing quite severe pain in that hip and leg (mostly at night/rest) and am waiting for the results of an x-ray. The Onc I saw recently wasn’t keen on doing any investigations other than an x-ray, she said it could be wear and tear, which I accept, but unless you’ve got x-ray vision how do you know! Hopefully she’ll be right!
Take care.
Claire x
Really sorry to hear about your husband. We lost a friend to the same cancer this year it was heartbreaking. I am currently on Bondrant for the bone and Femera and everything seems to be under control - 20 months now and haven’t had chemo yet which is good. Thanks for asking. Not sure how the process of genetic testing goes but my sister was referred because of her age and I got involved that way. Have you looked onthe family history thread yet? There is also a BRCA1 which I think I’m right in saying carries an even higher risk of BC and I’ve noticed on other threads a rarer gene called TP53 I think. My cousin had dx of BC last year aged 38 but its not linked (mothers side of family) she may have been unlucky as well.
Its good to hear about about Claires mum as pancreatic cancer is often found too late so nice too hear of someone surviving it.
I also have a son aged 11 if he is found to have this gene he could be at risk of pancreatic abd prostate cancer. As if you didn’t have enough things to worry about your kids as they grow up.
I know I recently had xray of hip coz of some pain there, but it was okay. Bone scan didn’t show up the cancer it was the ct scan showing these hotspots as they call them. How is your friend doing with her secondaries (i knew i’d spelt peretoneun wrong).
Hi Tracey,
I remember replying to you on another thread., very very sad about your husband. How are your girls coping with it all?
Yes my mum was very lucky, it was caught early as something ‘unusual’ was found when she had her gallbladder out. She was then monitored regularly by ERCP. I got her referred to the Middlesex hospital and she had a Whipples operation performed by a wonderful surgeon! Whenever she asks him if how she is is ‘normal’ he says that he doesn’t know as most patients don’t survive that long!
Good luck for your results next week and for your future treatment. Let us know how you get on.
Take care.
Claire x
Lynne, glad to hear you are avoiding chemo and treatment is keeping everything stable. I will ask when I go for my re-exision results next week about any genetic testing. Claire, thank you for asking about my girls, they have coped amazingly well over the last year with everything that has happened. I also have a 16yr old Son, who is so kind and caring, so I think they’re a pretty great bunch!! Hope results of your x-ray will be all good, what a worry it all is. I remember coming across something about lobular mets sometimes going to different places to ductal. From what I can remember, it’s more likely to go to the ovaries and digestive tract. I don’t know if any of you Essex girls have been to the monthly support group meeting at Rochelle House in Chelmsford. I went last night for the first time, it was very casual and friendly and there were two ladies from BCC demonstrating how to tie scarves and fit hair pieces. I never knew you can get a fake fringe!!
Hi Tracey,
I went once to a support group run by Southend Breast Unit, it was very friendly but it felt more like a WI meeting than a cancer support group, no-one actually seemed to talk about it. Anyway I felt that particular group wasn’t for me and I haven’t looked for another.
Before I had reconstruction I went to a recon support group at Broomfield Hospital where my plastic surgeon is based, I found this very good but it’s about a 45 minute drive so since all my surgery ended I haven’t been back.
I’m in regular contact with several women I met through bc forums, I’ve found this to be invaluable support and even 2 1/2 years later I visit this site and bcpals most days. Can’t seem to wean myself off!
Take care.
Claire x
Hi everyone,
On here at last. Like you Lynne, I had mets in my bones and peritoneum, plus retroperitoneum, around my bowels and above one eye- I was a mess. 14 years ago, I had a benign breast lump removed and was told my cysts and thickening was due to fibrocystic disease, so I kept putting the thickening I felt down to this, taking comfort in the fact that the previously tested lump was not cancerous- silly me!
Anyway, three years, I was opened up for a dodgy looking ovarian cyst and biopsies came back as benign. Then last year I had double vision and really bad anaemia. After three months of tests for some strange feeling things in my tum, I was opened up again to try and work out what was happening. They closed me up and told me that things were really bad. I was referred to an oncologist and to the hospice and told to apply for the DLA as I was unlikely to live more than 6 months. Thankfully, pathology showed that my biopsies showed strong hormone receptor staining and on that basis, I was told I had breast cancer. Although I wasn’t told that it was lobular, the spread is consistent with that.
So, here I am a year later, on hormonal therapy and doing very well. My second lot of scans have shown further improvement, my double vision is almost gone, I’m working full-time and have a very busy life, catching up with friends and doing my bit! I think it’s about time science came of age and there are so many things being discovered, particularly in breast cancer, that I hope to be around for a very long time yet!
I’d like to see the profile of lobular BC raised- everyone just looks for a lump!!
Anne xx