Lobular breast cancer just diagnosed

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-ilc

Deep 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 xx

Mine 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 xx

https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

Here 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.pdf

In 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
Well done for reaching out to this forum.  I found it a very hard but worthwhile step to take. 
I was diagnosed with invasive lobular 1.8 cm and a 2nd 1.1 cm both in my left breast, estrogen and progesterone positive, herceptin negative. 
I was in limbo land post biopsy as they weren't convinced of size.  Greater than 2cm I was going to have chemo before lumpectomy. I had a second biopsy  and contrast MRIs to confirm size etc. Proceeded with lumpectomy and removal of 3 sentinel lymph nodes.  My nodes were clear and margins on lumpectomy clear, although there was a second tumour that had gone undetected. 😳 luckily we got them both in one op.
I then had 5 weeks of radiation and am now on tamoxifen for at least 5 years. This starves the cancer cells  if any, of estrogen so they can't survive. 
Ask lots of questions.  Tap into your breadt care nurse.  What state are you? I'm in regional Vic but choose a surgeon in Melbourne.
Take care 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.🌺

Hi @Cindi  

Just a big Hello and Welcome from me 😃

Don't be frightened to post whatever questions you have,, I ask all sorts of silly things.. 
These ladies are all truly wonderful ❤️ 

Take care of you,, 

T.

OH THANK YOU !! everyone for answering my questions and reaching out. :)  I'm sorry I didn't reply sooner but was confused how to navigate this forum, I'm in my 60's so not as great on the computer as the younger ones. Also not sure how to reply to individual posts.  I live in Sydney NSW and am seeing a specialist at The Mater Hospital. It seems like quite a while since I was diagnosed as I've had so many tests and appointments since then. Even though its only a couple weeks.  So , since I last posted, I have gone from wanting double breast mastectomy's and reconstruction to being talked into (by my specialist) that I don't need this as it just puts me at more unnecessarily risk? so I've relented and I go into hospital this coming Wednesday 4th Oct. to remove the 2 tumors and some lymph nodes. The day before I go in for  ultra sound directed injections of a dye? into cancers to see which lymph nodes they go to I think. Then after op a long weeks wait for results . It's definetely quite scary and overwhelming.

All the best for your surgery next week @Cindi - it sounds similar to mine. ... try & keep yourself as busy as you can leading up to Tues/Wed - and also between the surgery & results - tho you'll be resting up a bit after the surgery - Netflix is good ;) 

So ... NO heavy lifting til your surgeon says 'yes' (ie washing baskets/hanging out clothes, reaching into high or low cupboards ...) and initially, no driving.  Maybe cook up some meals that you can freeze, for easy meals after you get home.  Definitely get a small softish cushion to take with you to the hospital (mine is like 'half a cushion' shape - for the journey home, as any bump/gutter you go over will jar the surgery area (petrol station & your driveway can be a killer!)  I hugged my cushion all the way home.  I also used it at night for the first week, as my arm didn't like lying low on the bed ... it needed to be elevated a bit.  Take the pain killers regularly for those first few days/week - don't let the pain break thru.  Hopefully it won't be too

If you want someone to be 'notified' in your reply, just whack '@' in front of their name as you type it - and their name should 'drop down' and just click on it.

Start putting aside bits you need to take to hospital with you (check here for some suggestions: https://onlinenetwork.bcna.org.au/discussion/16442/prep-for-surgery/p1)
Specially - take EAR PLUGS & an EYE MASK, as hospitals are bright, noisy places & it is difficult to get a decent night's sleep!  Take your preferred TBags/coffee too, if you have a favourite! ;) 

I was scared & a bit overwhelmed as I entered the hospital - but the relief I felt the next day, knowing the tumours had been removed, was just amazing!  I felt 'free' knowing it was GONE!

take care and all the best xx

If you keep updating this thread with how you are going even after the surgery, it can sort of be a 'diary' for you. ;) 

Thank you so much for all the helpful feedback, I'm SO GLAD I found this forum. I will keep up dating. Now I'm going out to find suitable clothing and find a small cushion/pillow for the homeward journey after op, and cook up something to freeze, I'm not sure how long I'll be in there, I heard only ONE night! I hope I'm ok to cope after only one night then home. I'm pretty sure I wont get much help at home. Anyway I'm strong and determined, I'll get through :)

Awesome!!  Yep, if a lumpectomy, just the one night is common ..... some even have day surgery & go home the same day!!!  

You'll be fine xx

Hi @Cindi, 
do you have a breast care nurse yet? Give them a Call and they’ll give you an ‘u’ shape pillow to use under your arm. These breast care nurse at with McGrath Foundation and I’ve checked there are a number of them station at The Mater Hospital. For your convenience, the link to McGrath is and you can find their contact numbers.
https://www.mcgrathfoundation.com.au/get-support/find-a-nurse/

the other things the breast care nurse can organise is free post surgery bras. They are very comfortable as these bras have front opening. You may find arm movements a little restricted post surgery if you have some lymph nodes removed, so front opening bras are useful.