Hello everyone, I'm new to this , I've only found out about my diagnosis one week ago and been going through a lot of testing over the week. I'm waiting on results of MRI on breasts, I had yesterday but wont find out anything till Monday afternoon. Also on Monday early morning I will have a pelvis CT scan to look at my liver as the liver function test is up. I have (so far) been diagnosed with one lump in left breast about 5 cm and smaller one but deeper in right breast. I've seen my specialist and he said they are Lobular and that they can't be treated with chemo. I see him again on Monday avo, I'm quite scared. He didn't seem to think my lymph nodes were swollen under my arm, but he wasn't sure. Does anyone here know if the breast MRI with contrast that I had yesterday will show up if the lymph nodes are affected? Can anyone tell me if they have or have had Lobular breast cancer? My specialist isn't the talkative kind and I can't help worrying. Hope someone can reach out to me I feel so alone as I know Lobular is more rare than the other types.

Agree with @Fraser We are all different!Very unfair of that lady in the waiting room! Her experience is hers alone

So sorry to see you join us here, @Cindi, we'll do our best to help you with your queries ... and we also fully understand how worried you are about all this xx.It is all so very scary at the start, with appointments EVERYWHERE .... being poked & prodded ..... Where abouts are you (state/town) ... we may have members nearby who can point you to different services available to your area. (You can edit your profile to include the town.)You may like to join the (private) Lobular group, where links & chats are put up, re Lobular. Click here & the Mods should see it on Monday & join you up.https://onlinenetwork.bcna.org.au/group/23-invasive-lobular-cancer-ilcDeep breaths .... It sounds like your team is doing LOTS of tests, so that is good. Have you been on any anti-inflammatory meds recently? I know my liver function test went sky high some years ago, when I was put onto Vioxx - and I had a bad reaction to it, sending the levels way up high! Lobular is a tricky one, as it doesn't show as a 'lump' ... it can be more 'strand like' .... I believe the MRI with contrast 'should' pick up any swollen lymph nodes .... hopefully you get your results on Mon (always ask for the reports too - and get a big box to put all your medical stuff in, so you can find it in the one spot!)Have you been introduced to a Breast Cancer/McGrath Nurse yet? They will be able to field many of your questions and intercede on your behalf with your team .... If your specialist has said there will be no chemo, maybe mention Immunotherapy? It is the 'way of the future' with a lot of different cancers.Try not to get too ahead of yourself as it may only confuse you more .... and definitely stay away from Dr Google xx. Everyone's diagnosis is different - so it is better to 'get it' directly from your team xxMine was lobular, but was caught early 5 1/2 years ago now & I had a lumpectomy followed by Radiation & then medication to reduce my hormones (ER & PR.) Feel free to jump onto this thread that covers a fair bit about the forum, including what to take to hospital ..... and other areas that you may like to investigate .... and maybe even have a laugh xxhttps://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latestHere is some info on Lobular - this website has a HEAP of info re Lobular ( ... it isn't 'that' rare - about 15% of all diagnosed BCs) .... https://lobularbreastcancer.org/wp-content/uploads/2023/02/Factsheet_2023_02_07_English_FINAL2.pdfIn the mean time, have a listen to Charlotte Tottman's podcasts on her own experience with breast cancer, as she fully understands what her clients were going thru, but only AFTER she'd had her own diagnosis! She is a specialist breast cancer psychologist - who was diagnosed a few years ago.:https://www.bcna.org.au/understanding-breast-cancer/bcna-resources/podcasts/charlotte-tottman-podcast-series/take care & all the best for your ongoing tests & results on Monday xx

Hi @Cindi I had lobular cancer - only about 10 to 15 percent of breast cancers are lobular - most are ductal.It is often called the “ sneaky” cancer as it often does not show up on a mammogram. Also it typically does not present as a neat round lump but as more of a spider web.I found a lump only 12 months after my last mammogram and it was so extensive I needed a mastectomy.I ultimately decided on a double mastectomy and DIEP flap reconstruction.Lobular is more likely to be hormone positive which gives extra treatment options.Everyone is slightly different in their circumstances and yet everyone on here “ gets it” in a way people who have never received a breast cancer diagnosis will.You will find this online community very supportive and informative .Take care.🌺

@Cindi and @GinGin @Tarma ..... you can also contact BCNA's helpline on 1800 500 258 to request the Berlei Care Kit - or get your Breast Care Nurse to do it on your behalf .....My Care Kit - New sizes availableBerlei has introduced 10 new post-surgery bra sizes into the My Care Kit range. These include 16B, 20C, 22C, 22D, 24D, 10DD, 22DD, 24DD, *12E and 20E. (*Please note 12E will arrival in late April).We are also pleased to let you know that new stock will have an extended hook and eye clasp along the back of the bra to provide additional length. We hope that changes to the clasp and an increased size range will provide an alternative to the current bra extenders.The My Care Kit contains a Berlei bra that's been specifically designed for the immediate recovery period, soft form inserts and information.If you haven't accessed the My Care Kit before and you have recently had breast cancer surgery; you can request the My Care Kit through your breast care nurse, or by contacting BCNA's Helpline on 1800 500 258.

Sorry to hear you’ve joined our exclusive club! I’ve had a lumpectomy twice in the same breast. 2007 for a ducal cancer and this year for a lobular cancer. The best advice I can give is get to Kmart and buy some post surgery bras. They are a crop type wireless bra with a zip up the front and $20 for 2. I got my usual size for day and sized up for night. You should get a Berlie post op bra but I find mine quite tight when I swell up. I have some lymphoedema as I’ve had a number of lymph nodes removed and radiation for my first cancer. You should get back to your usual routine in a week or so but watch the heavy lifting and reaching. Once you get the results following surgery the rest of your journey will start to get mapped out. All depends on what type of cancer you have and if there’s any spread. Don’t feel that you should have had a mastectomy - there’s lots of other options these days. Best of luck.

Lobular breast cancer just diagnosed

162 Replies

RedRose77
Member
2 years ago
Thankyou!
arpie
Member
2 years ago
Maybe whack that question up in its own thread, @RedRose77 .... I am sure you'll get a quicker response ... pop it in the Tests, Treatment & Side Effects 'category' ...

good luck (Tamoxifen is the only AI that I HAVEN'T tried, so can't help you there!!)
RedRose77
Member
2 years ago
Hi all,

I have a question about tamoxifen. I have started on it about 2 weeks ago and wanted to know if anyone who takes it has noticed they are bruising easily?
I woke up the other morning and noticed a bruise on my chin (no injury before) but I had squeezed a pimple the day before 😬 it doesn’t hurt, just doesn’t look very nice. And it has never happened before.
Cindi
Member
2 years ago
Thanks @arpie, I will contact my breast care nurse, although it doesn't really bother me that much, just looks a bit creepy. Probably restricts my stretching though. My surgeon didn't offer anything really just to see me in 3 months to check how I was tolerating the Exemestane. Hmmmmmm, man of few words.
arpie
Member
2 years ago
Well done on getting back into your your exercise regime so well @Cindi

Great that the oil is helping you xx. It really DOES take the edge off the AI side effects as well as helping with sleep.

I hope you can get some relief from the cording. Check with your Breast Care Nurse if you have one, as they should be able to point you to a local one?

Your Surgeon should have put you onto a Lymphodema Physio before you started the AIs (mine did, but I was lucky & never had problems.)

Wishing you all the best.
Cindi
Member
2 years ago
@Blossom, thanks for that I should try the physio. I'll ask my doc next visit.
Blossom1961
Member
2 years ago
Hi @Cindi I also get the cording under arms. My Lymphodema Physio massages these out so that they do not become a problem. I also find doing the 'open book' stretch reduces these.
Cindi
Member
2 years ago
I thought I'd update on how I'm going. Can't believe it was the beginning of November I had the double mastectomy , time goes fast.

I'm now going quite well considering.

I try to go to my gym most days of the week, even when I'm really tired I push myself as I want to try to help my bones stay strong, and get my fitness back, I always found this helped my sleeping at night.

The Hormone Blockers I'm on ( Exemestane) aren't nice but most of the side affects have settled down now with the help of Medicinal Cannabis oil, I was lucky to find a doctor who prescribed it to me.
It has really calmed me and sort of helped my sleeping.

Hot flushes still annoying but I've purchased a little purse size fan which blows air at me when I get the sweats! it's SO relieving!!

One thing with this medication I've noticed is that I'm loosing a lot of hair, has anyone else found this, ( I don't have a lot to spare.)

I have no pain at all now but noticed I have those horrible "cording" things under arms and down arms a bit, I guess this is something to do with lymph node removal ? I don't know how to get rid of them, can anyone help?

I know I'm very lucky as in not needing more treatment and really hope all of you on chemo and radiation treatment get through it ok, thinking of you all and wishing you luck :*
Cindi
Member
2 years ago
@cactusk, I sent you a private message so check in there :)
RedRose77
Member
2 years ago
Oh that’s fair enough! I didn’t want implants either so luckily the surgeon had something she could work with 😆

results are next week 🤞

xx

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Lobular breast cancer just diagnosed

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