Lobular anyone??

Welcome , but sorry you had to join this BC group of all groups

There are a lot of threads on ILC and many questions you'll have as you go through treatments also.  Jump in, respond where you care to and ask all the questions you need.  Many share everything here and do so as you feel you are ready.  It's a long haul, but we'll be there as we can to guide you and listen to you and rejoice as you make each hurdle! 

Did you get a copy of your pathology report from surgery? How long ago did you have it and where are you in treatment?

From everything I've read, it seems that ILC is no less responsive to treatment than IDC but just harder to find sometimes.  Being rarer, really dosen't enter into it, once it's found. I might be off base, but don't think so.  More will pop in here, or you could check out the other lobular post on that forum.  There is a ton of info from all the ladies with it, and as I said, if you have specidfics, please ask.  There are lot of well-informed women on this board from all aspects of treatments that share willingly!  It's a great support group and although we'd rather not see anyone HAVE to join, we welcome all with open arms and hearts.

Once you get your appts behind you and have a plan in place, the anxiety does come down a little, trust me.  The hardest part of this entire trip is the not knowing and waiting game at every turn.  Prayers you find that comfort level in the decisions ahead of you in treatment progrmas!

Hi Katie,

I am a surviour and you will be too!  It's a lot to absorb and it's a journey but it really was not as bad as I thought.  You will get better stay postive.   I also was stage lllB, 17 out of 21 nodes postive, tumor 7CM.  It will be two years in November.  I found a thickening area in my breast had the mammogram, ultrasound and 2 fine needle biopsies all came back negative.  But the lump was there and just bother me that it was there so I ask to have it removed.  What a shock it was to find out when I went back to the Dr two days after my surgery for a recheck  and found out the diagonis.  Went directly to a Breast Cancer surgical onocoligist to find out what needed to be done.  Had a masc in Dec. Went through Chemo and Radiation which was completed in July 2007.  

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Hi Katie,  I just wanted to reach out, also.  I'm glad to hear you have good support at home.  It really helps.  We will help you, too.  Come here and vent, ask questions, talk about anything you need to, and just hang out and read. That's what we do. I'll be looking for your posts.

Gitane 

Hi Katie,

I was diagnosed with ILC Stage IIIA last year. I just had my second mast on 9/16- just didn't want to deal with the continued MRIs and mammograms after having a breast cancer that failed to show up on mammos and also evaded two needle biopsies. Hormonal treatment is probably the most important element of treatment for those of us diagnosed with ILC.

There are women who live long healthy lives after Stage III breast cancer diagnosis. I found dealing with the uncertainty to be a big adjustment.

These days my life is mainly about things other than breast cancer, but a chunk of my attention and efforts go towards doing what I can to prevent recurrence. I take my AI (Femara) faithfully, I lost 16 pounds after my dx, I exercise (hard!) most days, and I take calcium and vitamin D3 (helps prevent bone mets). There have been recent studies indicating that exercise can cut risk of recurrence by as much as 50%. What better reason to get out there and exercise. It's great to see people I haven't seen for a while who know I've gone through chemo, radiation, and 2 mastectomies and have them be amazed that breast cancer seemed to IMPROVE me....Also, in some cases ILC is associated with a somewhat better prognosis than other breast cancers- depends on the specifics of the pathology. The Stage III forum is also very helpful-there's lots of support here.

If your experience is anything like mine things will be rocky for a while. Just ask for whatever you  need.

Allyson

Lately 800mg but I think more may be better- up to 2000mg maybe. There is a thread about D3  in the alternative treatment forum. 

Even though there are less women diagnosed with lobular than ductal, the treatment is the same and the prognosis is the same (although there are some who say lobular may have a slightly better prognosis since most lobular are ER/PR positive and her2 negative).  I had both ductal and lobular in my tumor,  It just means that your cancer was located in the lobules of the breast as opposed to the ducts.  There are many survivors of lobular breast cancer and many who had positive nodes.  Lobular is much harder to find since it does not form a lump which is why the average size at diagnosis is 5 cm compared to 2 cm for ductal.  You may also want to visit the stage III topic of discussion here as there are many women who are survivors of stage III disease here as well. 

Hello, I also was diagnosed last week with ILC. I have had several tests over the week, that came out pretty good. My cancer has not spread to my liver, lungs, or bones.

They did however, find a small area of concern on my right breast, which is new. My first lumpectomy about ten days ago was on my left breast. And I am scheduled for another lumpectomy on Monday. This to remove the remaining cancer and to see if it got into my lyphnodes.

My doctor gave me three choices regarding this new finding.

wait and see if the chemotherapy would get rid of the new small spot.

have another MRI and needle biopsy, which would delay the surgery on Monday.

And the last resort was a total mastectomy.

I am taking the wait and see option. But I am not all that sure of my decission. I just do not know enough about all of this, one week into it.

I am 52 years old. 4 Grandkids, 2 adult children.

Any kind of feedback would be good.

Hello Ladies

I was diagnosed with ILC July 14th. I  had a history of lobular hyperplasia having had 3 biopsy's in the last 4 years prior to this last one. My doctor was very informative with me on what this can lead to. The decision to have a bilat with reconstruction was not a difficult one for me personally.  As it turned out a small spot was found on my opposite breast after surgery that was not seen on the mammogram. I did not have lypmh node involvement and my Oncotype came back with a low score so I am on tamoxifen now. The fact that lobular can be sneaky and not seen on the different tests I recommend learning all you can so you can make the best choice for yourself. Once I learned I had cancer digging in and getting all the information I could was good therapy. The waiting period was the hardest for me but once I knew what I was going to do it became a little easier

Best Wishes

Rio

Hi Katie,

I'm also a lobular girl at stage III, for now.  I am 41 years old and I have an almost 2 year old daughter.  Tumor didn't show up on my mammo's, but did on on a core biopsy.  My breast is just hard all over, it's so hard to know where exactly the tumor actually is and the scans I had didn't give any accuracy to the fact either.   I'm having chemo prior to surgery to shrink it for a "better outcome".  I'm pretty sure I too will be opting for a bi-lat, as I also have had DCIS in my other breast twice in the last 4 years and don't want to worry about it at all once I am done with all of this.   Just curious... is your doctor telling you that you must have rads afterwards? Or is that your decision? 

Good luck and let us know how you make out!

Sue

hello .

I am from Macedonia i am with breast cancer stage 2 b grade 3.. 1 possitive node i am 34 years old mother on two boys 2 and 5 years old.. can you tell me how you diagnosed mets on your bones .. canu give me som advice... do you eat speciall food or something like that.. thank you a lot.. regards

Hi Simona,

I saw your post...so sorry to hear about your worry and your recent diagnosis, and welcome to our big group. I think if you reposted this on the "just diagnosed" thread (see below) you will get plenty of responses and support right away, which is so important right now. When you have a specific lobular question we are here for you!

Claire in AZ

https://community.breastcancer.org/forum/5