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

cactusk
Member
2 years ago
Hello @Cindi
Just catching up on this now - I'm so sorry to hear of your most recent update.
Sending you all the love and care and hope - given I"m just down the road from you do let me know if I can assist you in any way.
Keeping everything crossed for your test results
Kelly
Cindi
Member
2 years ago
Hi @iserbrown ,

Thank you, yes, hopefully. All we ever can do is hope.

xx
iserbrown
Member
2 years ago
@Cindi
Sad to read your predicament! Hopefully it has been caught early!
Best wishes
Take care
Cindi
Member
2 years ago
Hi Gin Gin,

Thank you for your kind thoughts, hope you're going ok.

Love the virtual hugs <3

xx
Cindi
Member
2 years ago
Thank you so much @Arpie, really appreciate you're support, yes it's scary.

I'm not sure if this is associated with my breast cancer, but my surgeon thought he'd got everything and I didn't need chemo or radiation last year, after my bilateral mastectomy, and removal of lymph nodes.

But I want to say to all you lovely women out there going through chemo or radiation, try to think to yourselves that it'll all be worth it, it'll kill the horrible cancer and less chance of it reoccurring somewhere else in your body.
I do wish I'd had it now.

Anyway, I just have to be strong, and whatever I need to do I'll do.

Cindi x
GinGin
Member
2 years ago
Oh dear Cindi 😟,

Just like to wish you all the best with the upcoming surgery and a speedy recovery.

Sending you virtual 🤗 hugs.

🌸💐
Gin
arpie
Member
2 years ago
Oh golly gosh @Cindi, sending you big hugs xxx

You're having a really hard time of it xx I am SO sorry to hear of this latest development xx. Wishing you all the best for your upcoming surgery - I can only imagine how scary this all is to you xx Take care my friend xx

I am so glad you are doing better on Anasrozole tho .... it ended up being the best one for me too xx
Cindi
Member
2 years ago
Hi All,

I haven't posted on here for a long time, I guess life just got in the way. But since I last posted I have stopped the exemestane hormone blocker as my memory was getting quite bad on it and now on Anastrozole which is a lot better( for me) , I still get hot flushes but I can handle them and memory fog but not as bad & hair loss too, but no aches.

I thought I was going well and keeping fit , eating well etc. but recently I had blood in my urine , so thought it was an ITU but have now found out it's not.

I've just got home from the hospital today after having found from scans that I have a blockage in the right urethra tube going into right kidney and I had to have a biopsy, the specialist thinks its an aggressive tumor by the looks of it ( which is very scary) and he will be removing kidney and urethra.

I'm quite shocked as I only had slight discomfort and had no idea .They think it's been growing quickly for a couple of months.
Now hes put in a stent to by pass the urethra until results come back. It's so big he thinks even if its benign the whole lot will have to come out, but he's pretty certain that it's cancer.

I thought I'd be ok after having the double mastectomy last year , finding that it hadn't spread to the lymph nodes, but I was wrong.
Although this might not be connected to the breast cancer.

I did what I shouldn't have done and googled about this type of cancer and wish I hadn't, it sounds grim.

Sorry to dump this bad news, I don't want to frighten others, he suggested this could be from smoking as I used to even though lightly and stopped completely about 28 years ago. I just don't know. :(

Anyway, it's good to be able to write this all down.

Good luck to everyone x

I
Cindi
Member
2 years ago
Hi @RedRose77,

I'm sorry I don't know much about Tamoxifen but my cousin was on that and said she had no sides, but I'm sure some people do.

I'm on exemestane hormone blocker and sides are really showing themselves now, I'm getting quite tired a lot and the body aches aren't good now, the CBD oil isn't helping as much anymore, I can handle the hot flushes, but my memory is really struggling, it's the worst side, and also my hair is falling out a lot.

I see my specialist next month so I guess I'll tell him and try another type?
does anyone have any input on this?
I can put up with lots of sides but the brain fog is horrible, and I'm retreating from conversations with people because I forget so much.

I
Cindi
Member
2 years ago
Hi @RedRose77,

I'm sorry I don't know much about Tamoxifen but my cousin was on that and said she had no sides, but I'm sure some people do.

I'm on exemestane hormone blocker and sides are really showing themselves now, I'm getting quite tired a lot and the body aches aren't good now, the CBD oil isn't helping as much anymore, I can handle the hot flushes, but my memory is really struggling, it's the worst side, and also my hair is falling out a lot.

I see my specialist next month so I guess I'll tell him and try another type? does anyone have any input on this? I can put up with lots of sides but the brain fog is horrible, and I'm retreating from conversations with people because I forget so much. :(

I

Forum Discussion

Lobular breast cancer just diagnosed

162 Replies

Recent Discussions

Triple Positive HER2+

Feeling lost

Second Opinion

Inoperable

Recommendations-North Brisbane -Public v Private- Surgeons