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
Hi everyone,

Well I'm now feeling pretty good , its been a few weeks since having my kidney, ureter & part of bladder removed, now waiting to be completely healed to start chemo.

This is why I'm reaching out.

Ive tried other forums, but getting no replies, so as my oncologist told me this chemo is sometimes used in breast cancer, thought someone here may be able to help me.

I'm going to be having 2 chemo drugs :Gemcitabine & Carboplatin.
Evidently it's strong and I'm a little worried about how I'll handle it as I'm a bit old now and not sure my body will tolerate it.

REALLY appreciate it if anyone has any info.
Thanks so much.

Cindi
LJS
Member
2 years ago
Some good news from my breast surgeon tonight on my MRI and PET scan results. Tumour in left breast may be smaller than first suggested (yay), but it didn't take up the dye well. Some activity on nodes and possible fibroid adenoma in right breast so she has suggested another specialised ultrasound early next week. No disease evident in rest of body. I am so relieved. We discussed lumpectomy as first preference for surgery on 13 August but if it requires a mastectomy, I'm okay with that. I just want the cancer out. I might sleep tonight!
WhiteLight
Member
2 years ago
Wishing you all the best with your results next week @ajs, I will be thinking of you. Hugs
LJS
Member
2 years ago
You are right @cranky_granny The waiting is definitely the worst. I lay there during the scans yesterday, as the dye ran through me, wondering if I was lighting up like a Christmas tree. I can't stand the thought of waiting until next week to face my surgeon again and what I might hear. Thankyou everyone for the virtual hugs. I so need them at the moment
iserbrown
Member
2 years ago
Best wishes to @LJS and @cranky_granny as you await results
Sending virtual hugs
Take care
arpie
Member
2 years ago
All the best to you, too @cranky_granny xx. Oooh - that's a long wait!! :( Can you not ring your Onc early & just get a 'yay or nay' next week & then the full on report appointment the week after? xx

All the best @LJS for your resutls - great that Charlotte's podcasts are helping you - they really are very good.
Yes, you WILL go back to your cheery self ..... just keep trying doing sutff you really love doing (as you are able, depending on your surgery/treatments.). Treat yourself now & then too. Yes, it is a lonely journey on your own - same with me xx. Big hugs xx

@Cindi - how are you going? xx. You are in all our thoughts xxx
cranky_granny
Member
2 years ago
Best wishes for to today. @LJS. The tests are for me nothing compared to the wait for results. I have a core biopsy today at 1pm. I have to wait till the 16 August for results grrrr.
LJS
Member
2 years ago
Morning All!
I am just waiting to go in and have my MRI and PET scans, but I wanted to say how wonderful Charlotte Tottman's podcasts are. She explains so well the brain fog and shock at her diagnosis, despite her expertise as a psychologist. We are all human and all react physiologically to stress and shock. It's so good to remember that when you feel scared and alone. It's now been two weeks since my biopsies and I wonder if I'll ever be back to my cheery self. Having lost my husband two years ago, this journey is extra lonely (despite the support of my wonderful children).
Cindi
Member
2 years ago
@iserbrown & @Tri , thanks so much for your support, and that's good Tri about your exercise program.
Glad you enjoy it.
I also find walking around an off leash dog park near me is very comforting, the dogs all happy and care free, it makes me happy!
I'll keep you updated. :)
x
Tri
Member
2 years ago
Thinking of you @Cindi
i hope you’re holding up as best as can be. My heart goes out to you and the family as you prepare for what is needed to get you back to health.
It sounds like exercising is something you love and I hope your next steps will enable you to continue that.
If you find you need more support I wanted to share my positive experience with my hospital’s oncology exercise rehabilitation program. I was surprised by the fatigue and some heart issues i encountered as a result of the treatment and how it was affecting my confidence and exercise routine. So I joined the program and had a tailored individual program developed for me, but the laughs with others were an added bonus. Having the exercise physiotherapists and the medical team around the corner gave me a lot of assurance. Here’s hoping your routine and pace won’t be too impacted and wishing you all the very best.

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Lobular breast cancer just diagnosed

162 Replies

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