How is this even possible!!! ILC??? does anyone understand it?

I finished my radiation exactly 1 year ago but I had an oophorectomy in December 2014 so that I could take an aromatase inhibitor (Arimidex/Anastrazole) since I was diagnosed pre-menopausally. 

How do all of you deal with the fear that ILC (or LCIS) might be present but might not be detected on a mammogram, sonogram, or MRI?

I currently have a large hematoma from an MRI guided biopsy that was done in May 2015 (thankfully - benign) and I was told by my oncologist that the hematoma may never go away on its own. I also have a 1.5cm (or 1.8cm depending on whether I go with the 1st or the 2nd opinion) linear non-mass enhancement with rapid washin washout kinetics.  This suspicious area could not be biopsied in May when I had the MRI guided biopsy, so I am on a 6 month wait and watch plan.  I will have my next round of tests done in November 2015.  The linear non-mass enhancement was seen on 5/8/15 but was not well visualized on the next MRI on 5/21/15 (when I had my MRI guided biopsy).  As a result, the linear non-mass enhancement went from being bi-rads 4b to bi-rads 3.

My oncologist has no rationale for why the linear non-mass enhancement was not visualized 2 and 12 weeks after initially being detected. 

Since I was diagnosed last year with pleomorphic ILC and pleomorphic LCIS in two areas, I am really concerned that something may be present but not found on imaging.  I am also really concerned about the linear non-mass enhancement and I am afraid that it may not be seen on my next round of tests. 

I need advice on how to deal with this.  Invasive lobular carcinoma is scary and I am really worried about a recurrence since mine was pleomorphic.  I have had 4 excisional biopsies, 2 lumpectomies, 6 core needle biopsies, and 1 cyst aspiration in my life.  My daughter even had a giant fibroadenoma 3 years ago when she was 17. 

Ideally, the double lumpectomy, radiation, oophorectomy, and Arimidex/Anastrazole with stop any recurrences.  However, I don't understand how 2 suspicious areas were found 6 months after my radiation concluded, in the same breast where I had the whole breast radiation.

What do all of you think and can you give me any advice?

I am so sorry for the ordeal that all of you are going through so I know that my issues seem trivial. 

I am extraordinarily lucky to have been diagnosed early.  I believe that I was only diagnosed because my bc grew in a lump that was previously biopsied.  My diagnosis was a true miracle.  When my lump changed, my bc was detected. It never would have been detected otherwise.  (I was told 6 months prior that I did not have to come back for another mammo/sono for 12 months.  Thank God that my gynecologist insisted that I get another mammo/sono in 6 months and to disregard what I was told.  My gynecologist saved my life.)  The other area where my malignancy was found grew in another lump that was previously biopsied.  That lump was biopsied a 2nd time last summer and the pathology report stated that the area was benign for a 2nd time.  It was not.  It was malignant.  (Large palpable lump that was not seen on mammo or sono.)  I was lucky that I had this lump removed and that is how the 2nd malignancy and 2nd area of pleomorphic LCIS were found. 

Good luck to all of you.  I am sending you hugs and positive thoughts and prayers.

Thanks for all of your help. 

From my experience being stage IV... I highly recommend Breast MRI's twice a year, especially with ILC. I know it's tricky with insurance and all but it is the best way to diagnose and try to catch it early. My onc told me that lobular is known for recurrence and it often shows up in the other breast later down the road. And, if it does come back definitely get a PET scan to rule out any potential spread anywhere else in the body because treatment is approached differently at that stage than if it is contained in the breast. I also would not trust a mammogram... they are not effective for ILC.

Dear Optimist, ChattyKat, and Shetland Pony:

Thank you so much for your responses.  I really appreciate all of your insight and advice. 

What is an NCCN center?

My medical oncologist is called the "guru".  She is fantastic and I am so lucky to have her as my oncologist since she doesn't take many new patients.  She is the best as far as I am concerned and I totally trust her. She does Tumor Marker blood tests at every visit.  I currently see her every 3 months.  I was seeing her every month when I was on the zoladex but then I had the oophorectomy so I did not need to see her every month any longer.  The fact that I am under close surveillance and I have TM tests every 3 months is very reassuring.

I live in Florida and my medical oncologist is in my town, but my next round of mammo, sono, and MRI imaging tests will be done in Texas at M.D. Anderson Cancer Center.  I had my surgery and radiation done at M.D. Anderson and I trust that they know what they are doing.  That being said, I still worry that something may be there and won't be seen by the imaging tests because lobular is so sneaky and hard to detect.  The bc diagnosis has made me neurotic. Now, all I do is check my breasts and underarms for any changes.

Does anyone know how reliable MRI's are for detecting invasive lobular carcinoma and LCIS?

At this point, I am stressed.  It is weird because I didn't feel worried when I was diagnosed or when I went through my treatment.  It wasn't until my 1st imaging tests in April/May 2015 that I started to worry and now I can't stop worrying.  I had a breast reduction and a breast lift at the time of my double lumpectomy because they had to remove about 12cm of breast tissue and I would have been deformed if they did not do the plastic surgery.  I was told that my nipples would not have been even and one breast would have been larger than the other.  I spent the year fighting with my insurance company because they refused to pay for the surgery.  They claimed that I had cosmetic surgery.  Thank God that they finally paid the bill!  I spent last year fighting bc and fighting my insurance company. 

I am hoping that the linear non-mass enhancement is visualized because that would be a relief to me.  However, I hope that it does not get any larger and that it is benign.  I also hope that nothing else is found.  However, at this point, I would not hesitate to have a double mastectomy if necessary.  The DIEP reconstruction sounds great.  I have spoken to people who have had the procedure and they think that it is fantastic.  The surgery was difficult but the recovery was not bad, according to who I spoke to. Good luck.

I am so sorry about the recurrences and the Stage IV diagnoses. (I am not being specific but you all know your dx's.)  I cannot even imagine how you are handling the dx. 

To everyone on this thread, good luck and positive thoughts and prayers to all of you.

You are all very helpful to me.  Thaks so much.  I wish that I could make things better for everyone.

614, NCCN stands for National Comprehensive Cancer Network, and your M.D. Anderson is one. You have a great oncologist that you trust and who is monitoring you well. MRI is very sensitive and good at seeing lobular. (It's problem is that it sees all sorts of things that aren't necessarily cancer but have to be followed up just in case.) You are doing an aggressive hormone therapy. This is all good.

I can tell you are feeling very stressed and worried. Cancer is scary, and the uncertainties are so hard to accept. It is actually common for people to feel more stressed when the crisis of diagnosis, surgery, and radiation is over. It's good you are sharing that here and not suffering alone. Your mental health and your quality of life are important. Some ideas for you that have helped me: Individual counseling with a therapist who has experience working with cancer patients, a support group, restorative yoga, meditation, guided imagery, exercise, time in nature, time with pets, any activity that gets you into "flow" where you are enjoying yourself in the moment. Also some people are helped by anti-anxiety meds. Reach out to the social workers at your hospital to find counseling and other resources.

And thank you for your kind words! I'm doing well. My greatest fear was realized, but I'm still here and enjoying my life, and hoping.