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
8 months ago
@Julez1958 ,

Thanks for the advise and yes I guess we all have different reactions to drugs, I'll try to just go with the flow.
x
Julez1958
Member
8 months ago
Hi @Cindi
As with all the drugs, different people have different reactions but nausea and fatigue seem to be common .
I have not been on these drugs but have been on others and have learnt to listen to my body and rest when I need to , learn to pace myself and say “ no” if required.
I find anti nausea meds make me very sleepy so it’s a bit of a trade off.
And staying hydrated ( water , herbal tea - I like green and peppermint) is recommended.
Take care 🌺
Cindi
Member
8 months ago
Hi @HelenlovesSnoopy ,

How are you going? sorry we haven't spoken for a while. Hope you're going well.

Thanks for your kind words and help. You did well to get through your chemo ok !

Not sure if this is going to be the same drugs or if they will alter dose as I got a call saying my kidney function bloods are not good so chemo will have to be changed?

Who knows, but i do go into hospital next Tuesday to have a Port insertion into chest for the chemo.
Did you get this?
xx
HelenlovesSnoop
Member
8 months ago
@Cindi, I put your drugs through ChatGPT, and it said they were harsh, but then I asked it to compare to my chemo drugs and things looked up because it said my (bearable) drugs were worse - as you know I got through my chemo ok, though I'm sure a combination of prayer and steroids helped! And it seems like the doctors have a medicine or therapy that helps at least a little with every side effect.

Here's what Chat wrote (I know it can make mistakes, so always good to check against other sources):
Gemcitabine and Carboplatin, while strong chemo drugs, are typically considered a bit easier on the body compared to Doxorubicin (the “red devil”) and Paclitaxel.
They can cause fatigue, nausea, low blood counts, and some hair thinning, but are generally less intense on the heart and nerves. Though side effects may still be noticeable, many people find this combination more manageable than the harsher Doxorubicin/Paclitaxel regimen.
To support your health during treatment:
Stay hydrated
Eat well-balanced meals
Get plenty of rest
Engage in light exercise
Manage stress with techniques like prayer, meditation, or stretching
You do all the above already anyway, but you've been through a lot already, so do go easy on yourself as much as possible, and make sure those boys take good care of you.

Sending you a million hugs Cindi, Helen xox
Cindi
Member
8 months ago
Hi @Tri ,
Thank you for the info, I'm sure I'll be ok, it's just the unknown that is daunting.
xx
Cindi
Member
8 months ago
Hi @Arpie,

Its the warmth and kindness of people like you that I love about this forum.
Thank you for the hugs and encouragement <3
Tri
Member
9 months ago
Hi @Cindi so glad you’re feeling well, I had carboplatin in combination with DoceTaxel, Herceptin and Perjeta as part of my pre surgery treatment. I had a few unwelcome side effects but my oncologist felt that the DoceTaxel component was the likely culprit for the more disruptive side effects, effecting my neuropathy, hair and nail loss.
Hope all goes well and you find you will be able to tolerate it.
arpie
Member
9 months ago
That you are, @Cindi, that you are xx As they say - When the going gets tough - the Tough Get Going ;) xx.
For you xx

Awesome that you can continue on the CBD oil - I need to get me some more - I am running out! ;)
Cindi
Member
9 months ago
Thank you @arpie , that's a help.
It's a bit daunting, the unknown, but I AM a fighter and will get through this.
Also very relieved that I am allowed to continue with my CBD oil, thank goodness, don't know how Id get through thee nights without it. So that's a pluss
arpie
Member
9 months ago
Hi Cindi

So good to hear you are healing well xx. Wishing you well with the Chemo ....

I've just put Carboplatin in our search area/newest and these posts came up ....

https://onlinenetwork.bcna.org.au/search?domain=all_content&query=Carboplatin&sort=-dateInserted&scope=site&source=community

And when I put 'Gemcitabine' in, it came up with 4 posts of those who have been on the duo!!

https://onlinenetwork.bcna.org.au/search?domain=all_content&query=Gemcitabine&sort=-dateInserted&scope=site&source=community

Wishing you well xx. Take care