Hi
Just wondered if anyone else had this was told it was rare form cancer?
Have grade 3 had gone to lympth nodes.
Still feel numb and in shock.
Should have surgery week after next.
Alot to decide.
X
Hello
I was dx with invasive Lobular in Nov 10. Mine was grade 2 and also went in my lymphs. Lobular is the 2nd most common, behind Ductal - so although not the most common, I’ve never heard it classed as rare. It’s treated in exactly the same way as Ductal and they will still want to know if it’s oestrogen positive, as this will allow them to give you specific treatments. You will have other tests as well (MRI, ct and bone). This isn’t because it’s more likely to spread than others, but because it’s less easy to detect and so is in us longer before we notice, meaning that it’s had more time to go on the move. These are routine, horrendous but routine.
You have got lots of decisions to make and my advice is to take control of your treatment plan if you can. At this stage everything is just in turmoil, some are quite happy for their medical team to lead them all the way, whilst others (me for instance) need to feel like they can be part of the decision making.
You say that you’re in for surgery soon, which is the normal way of doing things but there are other options. I asked to have chemo first and then mastectomy+reconstruction. This way I felt that I was only having to cope with one thing at a time, it also was quite reassuring to see the lumps shrinking.
This might not be for you, but please just spend a while thinking about how you want it to be. My thinking was that I didn’t want any regrets when it was all over and so any decision I made needed to be an informed one, that way, if things didn’t work out as I expected I’d know that it was the best decision at the time.
Hope this helps - good luck!
Xx
hello em i was diagnosed with lobular grade 3 and 5 lymph nodes involved had mastectomy on the 3rd feb and still coping with huge amounts of fluid. just like staycalm says lobular hides so by the time we feel something isnt right it has lots of time to grow. i was told in the beginning after my mri that the size was between 2cm and 4cm but ended up being 9cm huge. im now waiting for ct and bone scan which again is another frightening thing we have to do.my next appoinment is the 7th march to discuss chemo which if im honest have said quietly to myself and then out loud IM NOT HAVING IT.were all girls together here and theres always some lovely lady who will give you there best advice, pm me anytime lots of hugs to you jane xxx
Janeypaney
Have you really decided not to have chemo? Is this based on something your Onc has told you?
I had 6xFEC Jan - April last year. It was horrible but not the end of the world. I still managed to be Mum and Wife and Friend, went out for meals and on holiday. I guess what I’m saying is if you’re saying No because you’re scared it may not be as bad as you thought.
xx
Hiya
I was diagnosed with Lobular grade 3 with 5/5 lymph nodes involved. It was huge! I had chemotherapy first which shrank the tumour considerably, then a mastectomy with axillary clearance. This was followed by 15 radiotherapy treatments. Today is my last one. It’s taken 9 months from dx to get to where I am now. It has been one hell of a ride and I am very relieved that it stops today.
such great news souper trouper well done and lots of hugs. i had mastectomy first i wasnt given an option how big was yours. stay calm no i havnt said no and my onc definatly recommoneds it as she said im high risk… not sure what that means.im not the fittest of people at all ive been a slob over the years i guess although ive never been over weight, ive suffered anxiety in my life on many occasions before all this so have a nervous dipostion hence 4 beers every evening and 20 cigarettes a day i feel ashamed of myself when i type it now but thats the way ive always been and this worries me not being a great candiate for chemo. im trying running up and downstairs several times a day now to at least think im trying to improve something about myself. i feel mentally exhausted most days. you girls are such a support and im so very grateful of that jane xxxxxxxxx
Jane - my lump was more than 10cm - lobular breast cancer is very sneaky - I had felt an occasional sharp stabbing in my breast for about a month before finding the lump.
I used to drink most evenings until chemotherapy. It affects your taste buds and even though I would want a drink, it tasted awful and I would pour it away. Chemo will make you feel tired, depends on what drugs they give you. I had 4 x EC (which took all my hair) and 4 x TAX which made me so tired I had to crawl up the stairs. BUT - I am feeling much better now. I still get tired quickly but that is because of the Radiation treatments. Last one today so the only way is up now for me.
Hello Em
Sorry you’ve had to join us here, but it’s great for information and support.
Lobular is a bit rarer than some of the other types - about 10 - 15% of BC cases are lobular. But, as you can see from the responses you’ve already had, you are not alone.
I too had invasive lobular BC. My main tumour was a grade 3, 5.5cm x 2.5cm, it was also multi-focal, ER++. Despite enlarged nodes showing on an US scan, when they did a full clearance, they were clear.
I had an mx and immediate LD flap recon 13 months ago, chemo and then rads. At the start it is scary, but you’ll probably find you’ll feel better once you have your treatment plan - and even better once you start it. If you have any queries or concerns about the plan they’ve given you, do go back to your BCN.
The treatment isn’t pleasant, but it is ‘doable’. Yes, some people have very nasty side effects from chemo, but these can usually be relieved by changing meds, etc, and a lot of us get through very well. After my post-op recovery, I managed to keep working through most of it and was back full-time last November. I’m now on tamoxifen and don’t have too many side effects from that either.
For me, the difference it made in my survival and recurrance predictions/risks, meant chemo was a ‘no brainer’.
Good luck
Dx
Ooh - forgot to say the BCC do a leaflet about lobular - I’m sure that one of the mods will be along soon to welcome you and will put a link up for you.
Dx
Hi Em
I was diagnosed with Invasive Lobular BC, Grade 2 & ER+ on the 10th January this year.
I have had all the scans, a Sentinel Node Biopsy which revealed cells in my nodes. This Friday I am having my surgery, a mastectomy and DIEP reconstruction along with full node clearance.
I am still to find out what other treatment I will need although I have been told I will definitely need chemo and maybe Radiotheraphy to.
I am sorry that you have had to join us but everybody on here is so supportive and helpful and most of all they know what you are going through. You are not on your own.
Good luck with everything
Namar92 xxx
i was diagnosed with ilc on 20/1. grade 2 . two invasive areas of 15mm and 17 mm with mix of dcis and lcis covering and area of 10cm x 8cm. er +. Ultrasound says nodes cleared but had mx on wed there and now recovering at home. they removes some lymph nodes too to test them. get results next week. trying not to think about them until nearer the time as i have exhausted myself with tears and worry for the past 5 weeks that i am totally emotionally drained. i am 37 and have a two year old so life is hard right now. as i saw in other posts on other threads, bc is with me morning noon and night ( even dreamt about it last night). it is horrible but that said i am a bit better than i was in the first couple of weeks after diagnosis. the mx is not nearly as bad as you imagine. i only lost 100ml of fluid over all. was in for three night, one drain taken out in sat and now i am at home drain free and just put a wash on- each person is different but you need to eat properly and rest do you have the strength for the op. i really wish you all the best. i am told i will prob need chemo and rads too x
hi souper trouper meant to ask if you had any bone and body scans too jane xxx
Hi Em
I was diagnosed with lobular cancer, grade 2, 9/17 lymph nodes back in Feb 2009. My tumour was huge around 8cm x 6cm although I went to GP as soon as I felt it. Surgeon told me it can be a bit like a spider’s web that can suddenly join up. Histology showed it was multi-focal ie. it was in different places in the breast.
I had also been given HRT 6 weeks earlier (even though I was only peri menopausal at 45) and this was like petrol on a fire.
I had 4 x FEC first and the tumour shrunk to around 3cm x 2cm, I then had a mx and rads.
I have read that it is common for ILC to present as a large tumour but have also read that we have no worse an outcome as a result.
It is a terrible emotional and physical roller coaster but so many of us have been through it all and come out the other side. It may seem hard to believe now but life does regain normality albeit a slightly different one to before.
take care all
Elinda x
Hi Em,
Another lobular lady here, was dx in Feb2010 and had mx with immediate LD reconstruction and ALNC for a multifocal grade two 4cm&3cm ILC. Had fec/tax chemo and now on tamoxifen. ILC grows more diffuse and can be harder to detect on imaging and has a higher incidence of being bilateral but overall my onc says the treatment & prognosis of ILC is comparable to IDC. There is some evidence about a link between alcohol&IlC so now I very rarely have a drink. It all seems overwhelming at the beginning, the helpline is a great tool for support and if you are searching, don’t google… There is a lot of information here, or on the MacMillan/CRUK sites. Sending you a big hug. xx
i read that too about alcohol and ilc and asked my consultant as i was beating myself up over it but he said that’s not the case- it is not higher than any other forms of bc. he also said if i knew the cause of bc then i would be inline for a nobel prize!
Hi, here is a link to a previous thread about this topic, Elinda provided links to the research. And, we should never beat or blame ourselves for getting breast cancer!!
share.breastcancercare.org.uk/forum/viewtopic.php?p=448645
Flower - def don’t beat yourself up. Life is for living - and it’s also a risk sport.
I may possibly be increasing my risks of a recurrance or new primary by drinking alcohol, but I also massively increase my risks of a serious head injury by riding horses and a fatal collision by driving a dangerous stretch of road to work everyday!
(Having said that, I also justify enjoying a glass of wine with the thought that I don’t smoke, am not massively overweight, have a healthy diet and get plenty of exercise.)
Dx
Another ILC Lady here, diagnosed 15th December 2010. Mine was also mixed with IDC and had Mx plus reconstruction on 27th Jan, results from biopsy after that showed Lobular as the dominent.
I was very lucky as no definite lump and diagnosed when tumour was 18mm x 10mm, Grade 2 and no lymph nodes affected.
My BCN told me not to waste energy trying to find reasons. She sees Ladies whose lifestyle choices cover the full range with extremes at each end; there are no ‘rules’ as to who does or doesn’t get breast cancer.
Everybody finds their own way through this and make choices that work for them which is what ultimately matters.
I hope that you have as smooth a journey as possible.
Sx
hi,
I am 45 and was diagnosed with invasive lobular BC on the 3rd feb this year. I only found out today that it’s invasive after having asked…before I’d just been told lobular up til now.
I’m coping fine with the news and had various subsequent tests/biopsies but I am a little niggled by the way things have progressed for me so far as it’s all so slow, especially in light of the fact the government national guidelines for treatment, (according to my booklets) is to start treatment within 31 days.
My resolve now is to ask, ask, ask.
But, so far,I can’t find out how fast this cancer could possible grow within a certain time. Could it be growing more before I go for this op or more since my MRI and ultrasound scan? Probably not I think…something to ask surgeon this friday.
I had sentinel lymph nodes removed last tuesday but not had a grading of my cancer or told which treatment/s I’ll receive after as yet.
Just been told today the node biopsy came back negative so that’s a relief and that I will go for my mastectomy op on march 22nd at Canniesburn (Glasgow) where a surgeon will do the mastectomy and another will do the reconstruction.
I’ve been told I will get a reconstruction but that they don’t know what treatment I will get after that.
I haven’t made a decision on what kind of reconstruction to get but I do know it will not be the Tram flap due to having had 2 previous ops on my tum already.
I was told by an aquaintance, who also had same cancer a year ago that she was told there is a 65% chance of spread to other breast so she decided on a double mastectomy. When I asked my breast nurse of percentage chances of spread she said she didn’t know.
So this makes me a little uneasy too.
Anyway thought it might be good to see how others deal with this and the treatment they are getting.
As I’m so new to all this I just want to take each step as it comes. No point in getting myself read up on treatments I might not get for example.
I just hope I get through this with minimal disruption to my normal life.
Hi Fhifhi, your treatment is progressing more quickly than mine did and the consultant told me while I was waiting that a few weeks wouldn’t make any difference because I was anxious about it spreading.
I was diagnosed with invasive lobular July 2011 and was told I’d need lumpectomy but after MRI & more core biopsies I was told I needed MX as area was larger than shown on mammogram (this is normal for lobular and why the tests take a bit longer). I had sentinel node biopsy August 2011 (nodes clear) & MX Oct 2011.
The grading will be done when they analyse the tissure removed during your op and you’ll probab;y be told what further treatment you need 2 weeks after your op when the results come through. Hope this helps and good luck with your op x