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

iserbrown
Member
2 years ago
Best wishes for your Monday appointment @Cindi
Fingers crossed 🤞
cactusk
Member
2 years ago
Hello @Cindi
Just catching up on this now. I'm so sorry for your news - good on you for walking (and listening) it out at the gym. I too send all my thoughts to you for your appointment on Monday .
Kx
arpie
Member
2 years ago
All the best for your appt with the urologist on Monday xx. We'll all be thinking of you xx

Good on you for doing your exercise too .... keep doing that xx

take care, buddy xx
HelenlovesSnoop
Member
2 years ago
Oh Cindi! I'm so dreadfully sorry to hear that, but at the same time so proud of you that you were already off to the gym!! When I went to see an exercise physiologist at the 'oldies' gym, she told me her colleague had cancer and was exercising all through treatment! (Not saying you have to do that :p)

But you know we'll be cheering you on all the way. And you have your lovely family supporting you too I know.

In case it helps, my mum who had breast cancer also had a kidney removed at some point - years later we could all barely remember that and whether it had been cancer or not, or what it was. Anyway the point is, mum managed fine without it. Additionally my Beth only has one fully functioning kidney, as one has only a little function. I guess that's why we have two.

But I'm not making light of things - count me on your prayer team and I'm here to encourage you, and help talk you through subsequent treatments if you have them.

Sending you a million hugs and Pip (dog) and Percy (our newish cat) send their best too. My girls will be sorry to hear as they all know you as the fabulous artist. You have really inspired my Alice.

Helen <3 <3 <3
Cindi
Member
2 years ago
sorry, I forgot to check before posting, a few mistakes there :#
Cindi
Member
2 years ago
Hi @HelenlovesSnoopy ,

You are such a darling Helen, you've been trough so much but still find the time to write to me.
Thank you so much it means a lot.

I'm glad the Letrozle isn't too bad for you. Yes exercise can be fun.

I'm afraid I got news today that isn't so good.

I found out I have an aggressive cancer in right kidney and lining of urethra.

I don't know if it's from last years breast cancer or not, but but wherever it came from ITS NOT WELCOME!!

I'll find out more Monday when my Urologist comes back from holidays.

Anyway, I was very deoressed so I went to my gym ( haven't been since I had biopsy and stent in) and walked for an hour on treadmill reading a great book on my kindle, made me feel much better. :#

Talk soon <3xx
HelenlovesSnoop
Member
2 years ago
Hi lovely @Cindi,

I'm really sorry to hear of this development :'(.

I'll be praying that it turns out not to be cancer, but if it is, well you're such a brave person and have been doing all the right things with your exercise and eating - yes you can face this too as you said.

You've had a lot going on in your life too, with your Dad reaching 101 that's incredible!

Sending much love, prayers and support.
Helen xoxo

PS: I've been on Letrozole for 3 months and it seems to have settled. I have to do exercise to make the joint pain go away, which is good because that makes me want to exercise!
Cindi
Member
2 years ago
@Mez_BCNA ,

Thanks for that :)
Mez_BCNA
Community Manager
2 years ago
@Cindi just a little reminder you can contact our Helpline 1800 500 258 if you are looking for support or information while trying to navigate everything. Peter Mac have a good resource you may like to check out too Cancer Mind Care

Cancer Council 13 11 20 also have great practical supports and counselling services you can tap into.
Cindi
Member
2 years ago
Hi @cactusk ,

You're so kind thank you so much, I do appreciate it. So sorry I haven't been on here following how you & everyone's going, I've had a very busy time of it with my dad ( turned 101 in May! ) and all sorts of things happening, time flies....except when awaiting results!

How are you going? I hope you're ok.

All the best,

Cindi xx

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Lobular breast cancer just diagnosed

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