Searching for people with Invasive Lobular BC

Barbara - Hi, so sorry you're on this roller coaster ride, but glad you are reaching out.  I identify with your story...well, the scared and the bilateral surgery parts at least .  I had very dense breasts and basically useless mammograms.  I fought for an MRI which showed 5 suspicious areas in the left breast - 3 benign fibroadenomas, 1 ILC, and 1 DCIS.  None of these showed on mammogram and only 3 could be seen on ultrasound.  Even the MRI report commented that dense breast tissue somewhat limited the exam (yikes!).  Despite the other breast looking clear I opted for bilateral over unilateral surgery.  This was after educating myself about lobular CA, having already had ADH excised from the "good" breast several years before, and knowing that I would always be wondering what was lurking after already having 3 cancerous/pre-cancerous masses found.  My breast surgeon was very supportive and thought it was a reasonable decision.

The MX pathology showed that the right breast was indeed clear, but more early lobular and multiple areas of ADH were found sprinkled throughtout the left breast.  None of this showed on any of the images studies.  If I'd had any lingering doubts about choosing bilateral MX they were gone after hearing that report.

I was able to have nipple-sparing MX and I chose tissue expander/silicone implant reconstruction.  Other than some healing issues after MX I have done really well.  I am fortunate to have the most wonderful surgeons and oncologist.  In retrospect, other than not having cancer I wouldn't do a single thing differently regarding my surgical, reconstruction, and treatment plans.

Best of luck to you!

Pam, welcome and glad you found us. I was 47 at DX and had just sent my kid off to college. Cancer treatment was not exactly the kind of "me time" I had in mind for this time in my life. Oh well!

I too, like many of the other ILC patients here, opted for bilateral. No regrets.

Momine...my kids are in high school and within a year or two of empty nesting...so I agree totally about not the quality me time I was hoping for!



I meet with breast cancer surgeon tomorrow to get a surgical game plan. She and I tend to think that "cleaning house".... My term....is best to avoid a lifetime of worry and the potential of a hidden cancer.



I appreciate your sense of humor about this unexpected deal. Keep it coming!

Hi Pam,

I'm sorry you are dealing with BC, but glad you found these forums.  You can research all you want and find the best docs you can, but it still helps so much to "talk" to other women who are going through it with you.  You can commiserate with those at the same stage as you and also find some comfort from those who are further along and can help with their experiences.  It's overwhelming, especially at first, but it really does get a bit easier mentally once you know what you're dealing with and have your team in place and a game plan.

I had both ILC and DCIS in the left breast so lumpectomy wasn't an option.  I'd had a surgical biopsy of the right breast a year earlier with ADH so was already in breast cancer mode mentally.  I knew I wanted reconstruction and I decided I'd rather have a "matched set" and not always be waiting for the other shoe to drop so I chose bilateral surgery.  My breast surgeon actually looked relieved when I told her my decision (or else I was desperately looking for a sign from her that I'd made the right decision   ).  I had very dense breasts so mammograms were pretty useless (my masses were found by MRI).  Surgical pathology showed additional early lobular and multiple areas of ADH sprinkled throughout the left breast that hadn't shown up on any imaging modality.  Oddly, the right breast was totally clear.

If you choose to have reconstruction, there are great plastic surgeons out there who can construct a pretty close match if you choose unilateral surgery.  I'm very happy that I chose bilateral surgery, it was the right decision for me.  Everyone has to play the "what if" game in their own head and decide what they're comfortable with.

I wish you all the best - you can do this! 

Pam - I hope you'll also ask/research nipple sparing surgery if that's of any interest to you.  Not everyone is a candidate, but I credit it a great deal for how well I've done since surgery.  Just another thing to add to the list of questions.  Amazingly, some women still aren't being made aware that it's an option....

Pam - Of course, it's a very difficult thing to go through.  But, I was so lucky to have great docs who patiently answered my million questions.  I've done as well as I guess I could by educating myself and listening to that little voice inside.  There will be points along the way where there is no concrete right or wrong answer.  You'll wish someone would just tell you what to do, but you just have to crash course your way through, cross your fingers, and do what feels right for you.  I'm sorry to say there's no crystal ball so you just have to push through as best you can.

Keep us posted!

Hi Pam, and sorry for your troubles. I was not a very happy camper either in that treatment stage where you are now.

For the gut: pro-biotics, I use acidophilus, 3X a day. Onc said it was fine. It helps against thrush, gut problems, yeast etc. Your system is completely wiped and some good bacteria will help recovery.

For general crumminess, exercise. I know it is hard, but it really does help, even if all you can manage is a slow crawl around the block. Generally try to get OUT. Get some fresh air, go to a gallery or a cafe, see a friend, have a glass of wine, take in a movie. Try to find at least one thing to enjoy every day.

beachlovingmom - Sorry you have to be here, but welcome!  My mammogram was also "clear" due to very dense breast tissue.  I was tired of that report every year so finally fought to get an MRI just to ease my mind (no family history, no lumps felt).  Just a gut feeling... 

I ended up having ILC, DCIS, more lobular neoplasia, and multiple areas of ADH "sprinkled throughout the mid breast".  All in the left breast, nothing abnormal in the right.  Only the ILC and DCIS showed up on MRI/ultrasound.  So, went into BMX thinking there were two cancers and it turned out there was much more going on.  Each of us has to make decisions based on the facts at hand and our own comfort level.  I'm also so glad I chose bilateral over unilateral MX, it was the right choice for me.

My personal goal is to encourage women to push for MRI if they are told to watch and wait or if they have dense breast tissue.  I also like to spread the word about nipple-sparing MX.  Were you aware of NSM but just not a good candidate or were you not aware of it at all until after your MX? 

Sounds like you are handling things well so far.  It's a roller coaster ride for sure so there will be extra-tough days mixed in there.  Best wishes!

Hi Pam, the discomfort drove me quite nuts too. What I found most helpful in the end was an anti-inflammatory before bed, but check with your doc that it is OK to take, what he/she prefers etc.

it does get better, but it takes a while I am sorry to report.

I'm 10 years. Happy Happy. Plan on taking my little Femara pill for a long time. Hate side effects but I got to see both of my graduate college. Then my daughter's wedding, with my new hair cut. Last year I got to see my first grandbaby. Planning on dancing at my Grandaughter wedding.