Hi was told today that i have lobular breast cancer and that is hard to diagnose until it is large ,which it is. Have to def get chemotherapy and a mastectomy. I go tomorrow for a CT Scan and a full body bone scan on Friday to grade it.I was there a year ago and got the all clear, now think they missed it but i know this will not do me any good to dwell on that. Anyone got this type??
Sorry Lorna I can’t help but just bumping so someone else can. Xx
hi lorna i havent got lobular but know a lady who had it 8 yrs ago and did great on treatment, unfortunately had it again last year and was also large but she did so well and treatments have progressed since her first dx, i dont know more about it sorry but am sure someone will be along soon to advise x
Hi I had lobular mine was also large on diagnosis 75mm, have had mastectomy, chemo and radiotheraphy finished in October last year, have recently had reconstruction and annual check and am pleased to say doing well.
I don’t come on here so much anymore but feel free to ask any questions and I will try and answer, the very very worst part of this whole thing is where you are right now, once you know what is what you will start to feel in control and the most awful feeling you have right now will pass as you start to regain some control and get over the feeling of doom.
be kind to yourself
Nicky
Thanx Nicky- that means a lot as i realise i am at the start of this !The fact that u are doin well means a lot. I am quite clueless at this point and it took courage for me to look it up on the site , but at least it agreed with what the consultant said, Did u get chemo before the mastectomy as that is the plan for me, and did they do the reconstruction at the same time as the mastectomy? And is it rare or have u spoke to people with the same diagnosis?
Hi Lorna. I was diagnosed with lobular BC in October 2010. Started chemo in November and had the last one at the beginning of April. I’m having a mastectomy on 1st June then radiotherapy. It came out of the blue for me too.
I hope all your tests go ok. Keep posting and you’ll get plenty of support here.
Polly xx
Our posts overlapped Lorna. I dont think it’s rare as i know a couple of other people who have had it.
Mine was about 4.5 cm to start with.
P x
Hi Lorna. My bc is lobular, was diagnosed on April 21st so am also pretty new to this. Mine was only 12 mm and only picked up during my second us and core biopsy, after being told there
was nothing to worry about after the first one. I believe that about 1 in 5 bc are lobular and more common in 45-55 age group which I fall into.
Phil xx
Hi Lorna
I’ve got lobular, and was diagnosed on screening. I have smallish but bilateral, largest 2.2cm found on mammogram, then two more found on ultrasound and MRI. The good news is lobular is usually quite responsive to tamoxifen or aromatase inhibitors so after the early stuff you will have something that is hopefully treatable. .
I have read as it often doesn’t form a lump like ductal and I certainly didn’t feel anything.
I’m only having radiotherapy, but I have a friend at work whose lump was largish (not sure what size), had quite a few positive nodes and she had chemo before surgery, tried lumpectomy, then mastectomy and she is doing great 5 years on. She’s been my poster girl through all this.
Have they given you any idea what size they think it is?
Send me a PM if you think I can help, I remember how hard it was at the beginning.
S
Hi . i can feel it and to me it is huge.lol. However not yet. It is too large to get a mastectomy just now though so i do need chemo first. Away for a CT scan now…think i am still in shock. I am 45 (just)pml so i am bang on the age thing.
Hi Lorna
I completely understand that feeling of shock and disbelief. I was diagnosed with invasive lobular cancer in 2009 when I was 45. I also had involvement of 9/17 lymph nodes.
The problem with ILC is the difficulty in spotting it.
I had done a thorough breast check in the November after reading an article about breast cancer and got my husband to check too. Then in December I was given HRT (wrongly as it turns out) and suddenly I had pain in my breast and a hard swelling. It had gone from nothing to an 8cm x 6cm mass in the space of 6 weeks!
My surgeon explained that it’s like a spider’s web and not until it joins up that it can be felt. He said it would have been there for at least 2 years before. The most effective way to check for ILC is via an MRI with contrast.
I’m now 17 months post treatment. I had some chemo first, then surgery, then more chemo and then rads. I’m now on tamoxifen. Treatment is a long haul but we get through it.
Don’t hesitate to post if you have any questions. Elinda x
Hi Lorna, another lobular lady! Was 45 at dx in Jan 2010, had a peculiar hardened area, no other symptoms and was referred (luckily) by locum GP to Breast Clinic. No show on mammogram but US spotted two large areas, I saw it, it did indeed look like spider webs. I had right mx with immediate recon (LD flap no implants), the pathology showed two tumours, one 4 and 3 cm grade 2 and all other quandrants had grade 3 DCIS which I was told was very common. I had fec/tax chemo and am now on Tamoxifen. I am ER+ (4/8). For my first annual check up, I had a mammogram and MRI with contrast, NED. Good Luck to you. xx
Hi, another one here with Invasive Lobular BC. I am 43 and was diagnosed on 23rd March and like most of you, it came completely out of the blue. The doctor initially suggested I had mastitis and put me on antibs but I got a referral straight away to be safe, thank goodness. No lump just a hardening of the breast and my nipple went flat almost overnight. I have two lumps both over 2cm and most of the breast is infiltrated with cells (1 node effected). I had my 3rd of 6 chemos (FEC-T) on Monday and scans last week showed lumps, node and mass overall were responding to the treatment. This will be followed by mastectomy and rads then eventually reconstruction. The treatment is tough but manageable (I have a 2 very small children, just 2 and almost 4) so not much rest! As the others have said the waiting to find out all the results and for treatment to start is the worst bit. Hope you get started soon.
Oh my i so need to learn the lingo… I know i have lymph node involvement but ob wont know the grading until next week. Once i know the score on Tuesday at the oncology i can start dealing with it. I have mad notions that its somewhere else , still at the stage of telling work and family, mum been crying since yesterday, poor thing.x However 1 day at a time
Hi Lorna yet another Lobular lady. I was diagonised last Feb only after being told it was nothing 7 months earlier. I had opted for my milk ducts to be removed as they were bleeding and so thankful I did as this is when it was found.8 cms. I had mx with recon. It is very frigtening and you will go through every emotion possible. At the moment just take each day as it comes but it does improve, I have just returned from a trek in Peru for breast cancer care and if you had said I would be doing it this time lastyear I would have laughed and thought you were the one needing medical help! Found this forum fantastic for advice but also had to learn when to stop reading. I hated they way it affected family but its only because they love you so much! Take care x x x
Hi
Yet another!
Was dx (diagnosed) in Nov, 2 weeks after the doc found nothing. Again - big ‘lumps’ due to the way it hides itself, with the biggest being 5cm.
I’ve now finished chemo and am having a mastectomy (mx) in june with immediate recon. Rads (radiotherapy) to follow and then tamoxifen.
It’s terribly scary but you will be amazed with the strength you find within yourself. Chemo wasn’t the horror i was fearing (or read about in places). There were rotten times but also times when i went out, saw friends was ‘normal’. The chemo has been really effective, 3 of the lumps i can’t feel at all and the other barely.
The tests and consequent waiting is torture but you will fell better once you get started on your treatment.
x
Thanx everyone, i really am not alone!!! I am tidying cupboards strangely something i normally hate.lol .If is not mine or looks unuseful it is OUT…My husband and kids will be in the wheelie later poss… I will take it 1 day at a time as i cant bear to think ahead just now. Everyone is all Happy Chappy and smiling for each other in the house, though the dog has never been walked so much by us all.Lucky Zak at least. Really appreciate the support and i am glad i found this site.x
One day at a time is the best way to think at the moment. This ‘waiting bit’ to find out all the information is very, very hard, so just take each stage with the scans and appointments as separate hurdles to get through and don’t think of the big picture. Meant to put, mine also didn’t show on a mammogram and I had examined myself only a couple of weeks before and my mass is also large. As the others say this seems to be the case for lobular due to its nature but my consultant did say to me that it was one of the more ‘treatable’ ones.
Thanx…thank god this day is over.x
Hi Lorna45
Welcome to the forums, I’m sorry to read of your diagnosis, the first few days and weeks are always difficult when coming to terms with things and getting to grips with your treatment plans, etc.
I’ve given here the link to our Resource Pack for those people newly diagnosed. The pack is filled with information to help you better understand your diagnosis, test results and the various treatments available.
breastcancercare.org.uk/heal … tionId/82/
As well as the support you are receiving from the other users there is also the BCC helpline, do give them a ring if you need any further support or information. They’re on 0808 800 6000. Open 9-5 Monday to Friday and 9-2 Saturday.
Best wishes Sam, BCC Facilitator