ILC Stage 2

Mez_BCNA

Moderator moved @tarshy post to 'Newly Diagnosed':

tarshy
Well hello!
My last post failed as terrible at computers and unless straight forward, well.... 
First "fist full" of breast removed for ILC stage 2.  Know this differs from other forms of breast cancers and interested in other people's treatment plans.  Awaiting results at present. 

arpie

Hi @tarshy - sorry to see you join our exclusive club - the one none of us ever wanted to join!

If you are up to it, fill us in on your story so far .... what surgery you've had & ongoing treatments?  If you continue posting on this thread, it will sort of become a 'diary' of your active treatment ... 

Yes, ILC is different from the other BC cancers, as it doesn't show as a 'lump' as such - it is more 'strand like' and can be more difficult to identify in a mammogram. It is even more difficult to identify if you have dense breast tissue.  

Was yours found during a routine mammogram check, or did you 'find a lump' & got it checked.  

My GP found mine by accident, just months after a 'clear' mammogram in the rural bus.  I had gone in for a pap smear, & she said "I'll check your breasts too'' ..... BOOM!   The followup mammogram (in a Radiology Dept) did not show the ILC, so a biopsy was suggested & there were 2 tumours, both ILC.  I had a lumpectomy, followed by 4 weeks radiation and currently on AIs/hormone blockers for 7 years (I finish next year.)

Feel free to join the ILC Private Group - we put up any new info 'as it is found' to keep abreast (so to speak) of new developments.
https://onlinenetwork.bcna.org.au/group/23-invasive-lobular-cancer-ilc

Also jump onto this thread for lots more info on the Forum ...... with 'off topic' threads like our pets, art & craft, meals & even some 'funnies' to give us a giggle.
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

take care & all the best 

tarshy

Thankyou for your comments!

My mammogram showed calcification so got the recall for follow up.  Only showed up on ultrasound x3 and a sneaky 4th showed up on contrast mammogram.  Had a lumpectomy last week and really hope they got it all.  MRI would have been useful I think, but I guess the surgeons know best!  

If they got it all then onto radiotherapy and hormone blocking as yourself.  How did you handle the hormone blocking? 

arpie

Hi @tarshy

I hope you are recovering well from your lumpectomy - make sure you don't do any lifting or household chores just yet as you don't want a setback! .... I hope that you get the all clear when your pathology results are available to you.  

Make sure you get copies of all the reports from your Surgeon/pathology/blood tests as you go (copies should all go to your GP if you can't get them from your specialists.)  I'd also recommend recording your visits on your phone too - as it is really easy to miss important things, whilst pondering what they'd just said!    And take a trusted friend or family member with you as both physical & emotional backup.  An extra set of ears is so handy, as not everyone hears the same thing!

Re hormone therapy - Everyone is different and it is best to not have any preconceived ideas on them before you start.   Some people fly thru it with no side effects at all, whilst others may get a range of side effects.  Some may annoy & frustrate them, but in discussion with your Oncologist, the side effects should be manageable - or it may entail trying a different version of AI (Aromatase Inhibitor) if the first one doesn't suit you.  My body didn't like the first one, so I swapped to another one & was on it for 6 months.  Then I swapped to a different one again & I've been on it for the last 5 years!   I finish up with them next year. 

My radiation treatment went off really well - tho i had a bit of burning towards the end of my 4 weeks + booster treatments .... keeping the lotions & potions up to it after every session is the way to go (and continue using them, for another 2-4 weeks after finishing too, as the skin can still be affected for a while afterwards.) 

take care and all the best for your results xx

tarshy

Thanks again for your insights!

Lumpectomy proved successful with clear margins and a 5th small one in the mix.  Have Seroma as a complications now but walking around double bra'ed does help.  9 sentinel nodes removed and 2 came back very slightly positive.  Off to see an oncologist re need for chemotherapy.???? 

Have you heard of long term >20yrs with ILC?  I am worried when reading it is more likely to lay dormant and pop up latter than the other breast cancers. 

Glad you are nearly finishing treatment!!

arpie

Great that you have clear margins @tarshy... bummer they found some in the nodes.  ...  All the best with the Onc re possible chemo xx. Make sure you record it all, so that you can go over it again later on ..... you can never remember everything that was said on the day.

Sadly, there is no guarantee that any of the various BC cancers won't 'come back' ... but as ILC is often considered a 'slow growing' one .... it 'may' come back in 10-15 years - but also, it may NOT!   

So I reckon ... just get everything done that you need to have done treatment wise - and then get your life back & tick off all the 'bucket list' things & family things .... and enjoy xx

take care xx

tarshy

Sound advice and you do make me feel better- Thankyou.  It is the unknown we don't like and no one has said to me yet it is going to be OK!!!!

Is is an option or would you do hormone treatment for greater than 5 yrs? I know some people to 7

arpie

Yep - fear of the unknown is totally correct - but don't get ahead of yourself, either.   This disease mucks with your brain even MORE than your body, I reckon!     As most of us were fit & well & had no idea it was even there, until it was found ...  and then it all hits the fan!

Re hormone treatment - in the old days when there was only Tamoxifen, it was pretty standard treatment to have a full mastectomy followed by 10 years of Tamoxifen .... But now, the more usual treatment is lumpectomy (altho there are many who still need or choose to have mastectomies) and either 5 or or 10 years of AIs (Aromatase Inhibitors/hormone suppression.)  Mine was supposed to be 5 years but I asked my Onc if I could go for another 2 years & she said yes, but no more.  (It is really all dependent on your BC type, tumour size etc) .... so I finish my Meds this time next year.

take care x