Yesterday diagnosed with Lobular cancer

Litha, you have come to a good place.  There are a lot of very smart ladies here and we are all in the same boat; fighting this horrid disease. 

I had a mastectomy on the 9th of this month and I'm feeling pretty good.  I will be going through chemo starting the 15th and that is a little scary.  Everyone reacts so differently and there is no way to gauge what my SE (Side effects) will be. 

As for telling folks, you are right, everyone reacts differently, but you do need to tell some people.  Family is first, assuming you get along with yours. (I hope so)  Ask around and find some support groups and those should also give you some guidance on how to speak to your son.

Hi Litha and welcome,

As you can already see, you've come to the right place for some great support. In addition to the helpful advice you've received here, you may also want to read the main Breastcancer.org site, including the section on ILC, for all kinds of good information and to help prepare for treatment.

We hope this helps and best of luck to you! Keep coming back to keep us posted!

--Your Mods

Hi Litha -I remebr the chaos in my brain when first told (although I knew in my gut well before).  Kind of surprised you have been put on Tomoxifen already - that is usually given once you have finished all the treatment.  I have never heard of anyone taking it so early even before the full dx is completed.  I think you should ask why you are taking it now.

You did a good thing to write it all down - you could also try to voice record your meetings.  You get given a lot of information in a short period of time... it is said that you only remember 30% of what is said so best not to rely on memory alone.

Remember baby steps, one day at a time.  Also it is good to know that ILC is very slow growing (and very hard to detect in mammograms) so a week or two here and there really will make no difference at all.   Waiting for your SNB on the 20th of June will not harm you - but if it can be sooner then it might easy your worry knowing that treatment is beginning.

Normally for ILC most tumours are large when they are first detected so most need chemotherapy before and/or after the mastectomy.  All mastectomys are always (I think) followed by radiation.  Then Tomoxifen for 5 years with monitoring.

It is going to be tough with a little boy to look after - but if you can get just one good friend to be your go to person thats all you need. I suggest you quickly organise a range of regular after school/weekend activities for him that you do not need to attend - to give you more time to rest and take things slower.

We're all thinking of you.  

Hi.  I'm new to this site, although my diagnosis was about the same time as Litha's - multicentric ILC, which 10 core-needle biopsies confirmed.  All small tumors. But since then, one node was biopsied, unfortunately is also affected.  Clinically Stage 2a.  I am scheduled for surgery this Thursday (!!), July 26 - still trying adjust, get ready, etc.  Although I'm not sure you ever really can....

So Litha, I understand your nervousness.  I go through phases of being upbeat, everything is going to be okay, processing and absorbing as much information as I can - to being overwhelmed, unsure of what life will be like afterwards, etc.  One of my biggest worries is risk of lymphedema, which I think would severely impact my quality of life; the affected node now requires axial dissection - ugh.... 

 I've been given the option of lumpectomy (big one) or mastectomy. But the possibility that mastectomy may not require post-op radiation has me leaning that way - that and the possibility that there are more tumors not yet detected.  Seems wise to just remove as much as they can.  Because of the risk of radiation, I have also opted against immediate reconstruction.  Still lots of questions on all these issues in my mind, however - I hope I can settle them by Wednesday pre-op meetings with my surgeons.  Or maybe some of you folks have thoughts on the matter?

From a personal standpoint - no kids, no longer married, but my ex is nearby and very supportive; otherwise, I have a small network of friends, which will just have to do. I've been managing my appointments solo, which always surprises my providers.

Anyway, that's my story.  Not sure there is a lesson in it - yet.  Wishing you all the best,

Juli

Hello jukamo,  Another multifocal gal here, also. I also chose BMX, a left-side mast was already in the cards.  Will be thinking of you Thursday.  My surgery went well, and I anticipate yours will, too.  Let us know how you are doing.  Hugs. G.

Hi all - sugery went well yesterday, and i am back home today.  Generally feeling good but now spooked by swelling under my ax dissection arm.  Maybe not unusual, but certainly new to me.  Sitting with ice pack and typing with one hand....

Hello Everyone...
Very new to all this...including terminology & abbrev. Tuesday 7/31/12 got the pathology result of ILC, <1cm, left breast. 8/8 will have MRI on both breasts, 8/13 meeting with breast surgeon. I'm up and down emotionally, plus scared witless. My mom lost her life to breast cancer 14 yrs ago and her sister 7 yrs ago...I'm 65 yrs old. Just a year ago I was diagnosed with uterine cancer, had a complete hyster, no rad, my percentages were really good, is why I didn't opt for rad. 4 wks ago had my yearly mammo, came back suspicious, more views, ultrasound and ultra sound guided core biopsy 7/26. I'm frightened that lymph nodes may have been affected and even more frightened if a mastectomy is ordered. Was reading the previous posts and I just hope that I can remain as positive about all this, as seems many of you have weathered the storm. I'm pretty much a strong gal, but these last 3 years have been terrible and emotionally draining. My husband of 43 yrs died of colon cancer June, 2009..then my uterine cancer last year, my 16 yr old grandson died 4/29/2012, now this ILC. I feel so overwhelmed.

Thank you Gitane...your gentle words are very much appreciated. I will definitely be a participating member here. In as much as some family and a few best friends try their darnedest to understand and be supportive, I've always found those who have walked thru the same fire, in the same shoes to be the best support. Thank you again! 

Hi Litha,  I'm so glad your surgery went so well and that your family is taking such good care of you.  TLC is so important.  No rads and no further surgery sound great, very encouraging.  As to chemo or not, there was a time when any tumor over 2 cm got chemo, even if there was nothing in the nodes.  That's not necessarily the case now.  (I'm assuming your tumor is 33 mm not cm!) It's not so black and white.  Now they are looking at the aggressiveness of the tumor to help decide.  Here in the U.S. (I don't know where you are.)  the Oncotype DX test is ordered sometimes by the oncologist to help you decide.  There is some research to say that chemo does not work as well in ILC, but that doesn't necessarily mean we do not benefit from it.  Research out of Germany, with longer than usual follow up, is showing that ER+ prognosis may be improved by chemo, more than was previously thought, and that a longer chemo protocol may be even better.  Let your oncologist help you decide.  You may even want to get second/third opinions from other oncologists to help. Since you are only 42 years old, it's possible chemo will be recommended.  Relax, rest, recover.   G.  

Hi Litha

My onc said to me the same thing: if I was 70, she wouldn't give me chemo, but since I m just 35, she recommended it. I've just finished chemo, no regret. I am in Canada.

My surgeon said my tumour was not aggressive but more risk of local recurrence.

Dont know your tumour, LN, Er, Pr and Her2  situations, but hopefully you will make your own choice and no regret!

Hi Litha,

Nobody here wants to have chemo, another C word, sigh....

I believe chemo will be doable for you since you are still so young.

I had very long streight brown hair too...Dont think about it too much, it will come back anyway!

My new hair started to grow before chemo had finished (started from my last dose of Fec-D).

I will take Tamoxifen soon, for 5 years too.

Keep good thoughts, You will be fine!

Litha, it is OK to be vain. You may have cancer, but you are still human, thankfully.



I dealt with the hair loss just fine, boob loss too, but freaked completely over other stuff that was relatively minor, like messed up nails, one nail really. We all muddle through the best we can, and occasional feak-outs are allowed.

In what way is the PET scan better than the CT scan? And do you know why it is not given to us?

Hi Litha,

Do you have Fec-D (or Fec-T,they are the same) chemo as well?  'cause I heard for commonwealth countries Fec-D/T  is commonly used.

If yours is Fec-D/T, I can tell you now that it is really doable.

xoxo

Hi Litha,

I had 3 round of Fec and 3 round of D/T. Each round lasted 3 weeks, so in total it was 4 and half months for me too.

Do you mean you will just have Fec for 4 and half months?

Fec part for me was more difficult than D/T part, 'cause I threw up a lot and pills did not work on me. But I heard lots of people never throw up during chemo.

Better not to read too much side effects now, since everyone is different and each one's body reacts very differently. So just wait and see.

Good luck with chemo!

xoxo