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

Cindi
Member
2 years ago
Oh it's so hard waiting for results, we all know that, so, so hard.

Good luck.

I didn't have much fat on me because I'd lost so much weight 6 months prior to being diagnosed, so that's one reason why I didn't want reconstruction, and i didn't want the implants.

How long till results back?

xx
RedRose77
Member
2 years ago
Thanks Cindi, that’s encouraging to hear you’re back at the gym.
Cindi
Member
2 years ago
Oh dear, I don't know why my message doubled up there, sorry.

That's good that you are being careful, I understand how it's hard because I'm also usually always on the go too. But just be very careful to do nothing!!

I did have complications because the morning I came home, they removed the last draining tube then I went home and saw that nothing had been done while I was in hospital for 4 days, and our house gets full of fur from our 3 cats, so I decided to just sweep up, it only took that for me to have a big bleed and swelling, which lasted a long time.

It's now been 6 weeks since surgery and I'm healed up pretty well, still some bruising and a little painful along the scar line but ok. I'm back in the gym but taking it slowly.

So my advise is to take it easy and get others to do any work that needs doing. :#
RedRose77
Member
2 years ago
I’m feeling pretty good considering. Restricted with movement because the cut to my abdo is quite big. I went with reconstruction because I wasn’t ready to face being flat! ( I had quite big boobs.)

just now waiting on biopsy results xx
Cindi
Member
2 years ago
Thanks @redrose77, I hope you're taking it easy, don't do any house work no matter how tempting it may be as I did and paid the price! it delayed my healing heaps.

How are you feeling? I didn't have the reconstruction but I do sometimes wear a bra out with prosthetics in it, but at home and around garden I just go flat.

It's quite nice in this heat :)

Which state are you in? I'm in Sydney.

I hope you heal well
RedRose77
Member
2 years ago
Hi Cindi,

I’m feeling good but am doing very little (which is hard as I’m used to being on the go!) I am being very mindful of taking things slowly. Hopefully the reconstruction continues to heal well.

Did you have any complications with healing?

I’m in Melbourne xx
Cindi
Member
2 years ago
Hi @redrose77,
,How are you feeling? make sure you take it easy .... I didn't and paid for it. It took much longer to heal.

Where abouts are you? I'm in Sydney.

I didn't have a reconstruction, but I do sometimes wear a bra with prosthetics, but at home I go flat ( quite nice in the hot weather) :)

Hope you're feeling ok.
Cindi
Member
2 years ago
Hi @cactusk,
That's helpful, thank you. Yes we should chat.
I'll send you a message if you like.
RedRose77
Member
2 years ago
Hi Cindi, I have just been discharged from hospital after having a mastectomy and reconstruction (DIEP flap) after being diagnosed with lobular back in October. Happy to pass on any information you might like.
Take care xx
cactusk
Member
2 years ago
Hi @Cindi
i too am being treated out of Mater hospital and had overnight lumpectomy.
i meet my med onc and rad onc this week - I am still taking it all a day at a time, the waiting is really challenging.
i went in to see the staff at The Kay Van Norton centre - a separate building but on-site at Mater.
it has a bunch of support services - may be helpful for you?
happy to chat more given we’re both at the same hospital.
kelly ( cactusk)

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Lobular breast cancer just diagnosed

162 Replies

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