Who else had Bilateral BC at time of diagnosis?

L2girl, I love your way of thinking! I had DCIS on the left, and IDC on the right. But interesting, there were two different cancers on the right. One was ER+/PR+ and the other was triple negative. I love the thought that I already had the recurrence.....which is certainly possible since it was over two years since mammograms. With that thought in mind, the recurrence is done! Onward with the chemo, 6 more Taxols to go then moving on to Arimidex.

Good luck to you!

Martha

I found a large lump on my right breast.  Biopsy found ILC.  Had MRI which showed questionable small cyst like area on my left breast.  Biopsy showed DIC.  After BMX another very small ILC was discovered on the same side as the DIC.  All of it was discovered 3 1/2 months after a clear Mammogram and examination by GYN.  

LIC is very slow growing and may spread in thin layers that are very hard to detect.  I have stage 4 mets from my diaphragm down to my appendix in my abdomen.

On the happy side, I am expecting a granddaughter in July and had my first grandchild (a boy) 16 months ago.   He is staying with me so his parents can have a little together time this weekend.  I feel very blessed!

Thankful this thread was bumped with some more information!   I was just diagnosed with DCIS in both breasts and am interested in the 'rarity' of this also.   The nurse at doc's office said because I had it bilaterally my insurance would cover a genetic test.  So I had it done - then the insurance co. sends me a letter that they do not cover it because 'there is no documentation the bilateral breast cancer was two primaries or metastatic disease.'  Plus I am over 50.   This is fine, but now I am curious -- it is NOT two primaries?   then what is it?

As per my oncologist, if you have LCIS, you have a greater chance of developing another kind of cancer in the other breast. That's why it is more concerning when it is found. The problem is that it isn't often found by conventional mammogram or even MRI, especially if you have dense breasts. It's very slow growing and I've read of doctors who estimate LCIS was growing for 7-10 years before found. They don't know how long it takes to become invasive, why it can become invasive earlier rather than later, or why it sometimes stays in the lobules and never becomes invasive. It's not unusual to have a DCIS diagnosis in one breast and, if choosing prophylactic mastectomy on the other side, find out the "good" side had LCIS. (That was my experience. It was missed on two diagnostic mammograms and a pre-op MRI with contrast.)

There are several threads devoted to ILC and the lack of research on it. It's pretty shocking and called "the forgotten breast cancer" by some because it comprises only 10-15% of all breast cancers and doesn't get as much research $$.  Anyone with LCIS should keep informed because you don't know if yours will become ILC. The issue of dense breasts is "hot." Many states now require doctors to advise patients after mammograms that dense breasts were found and they might need ultrasound. For more info, go to areyoudense.org. They also have a Facebook page, Are You Dense Inc. There are many, many stories from women who had the same unfortunate experience.

A primary means a different kind of cancer, not the same kind in both breasts. I am not aware that having the same kind of breast cancer in both breasts has anything to do with having the BRCA 1 or 2 gene, so I would doubt your doctor's staff's statement about the insurance company paying for genetic testing. The vast majority of us with breast cancer have no hereditary factor.

Hi Judy,

You've been through so much! What a shame you had to go through a second surgery. From what I've read, doctors are getting better at diagnosing LCIS and ILC but have a long way to go until women are happy. We struggle to make the right decisions for our particular situation but maybe we don't have all the info we need at that time. It really scares me when women choose lumpectomy only on the affected side when they've been diagnosed with LCIS. My oncologist says finding it means a 54% chance of cancer showing up (or already there?) in the other breast: DCIS, LCIS, ILC or another kind of breast cancer.

In one week I went from thinking it could not be cancer, it was such a soft lump, to a bilateral mastectomy.   The soft lump, of course, was a large ILC.  The other breast had a cyst the breast surgeon din't think was cancer, but wanted a biopsy.  It was IDC, triple positive, but very small.  After surgery pathology found another ILC on the sam side as the IDC.

Unfortunately for me, the ILC has mets to my abdomen mostly the GI tract.  It's pretty unusual for the first met found to the abdomen.  I had a PET last March that was clear, but my tumor markers suddenly went up in November.  MO ordered a bone scan (clear) and a MRI of chest and abdomen.  MRI showed what was going on in my abdomen.

Endoscopy and colonoscopy confirmed ILC by biopsy.

Sandra,  I guess from BMX until abdominal tumor discovery was about 4 1/2 years.

Hi Martha. Since I am new here 

and mainly trying to educate myself, I have a question. I hope you won't mind. I noticed in your history that you said you have mets. Since you are Stage 2, that confused me. I read your story and still can't figure it out. Can you help me understand please? Thank you.

Hi all! I am newly diagnosed and looking for info. My story is like many on this thread. Right had a cyst, ultrasound found suspicious mass next to cyst. Biopsy revealed DCIS ER/PR+, HER2-. Surgeon #2 (GenSur) suggested MRI said it was clean. Surgeon #1 (OncSur) suggested ultrasound on left after viewing MRI. Biopsy revealed IDC ER/PR+, HER2+. After 3 MO's and 3 surgeons we went with a double mastectomy. Pathology revealed DCIS and IDC in both breasts and clean lymph nodes (2 from right and 1 from left). All small IDC and only one HER2+. The DCIS does not really concern me any longer...my breasts are gone. My concern is the treatment. I am 43. I would love to skip any further treatment. Because I went with the double mast and have 0 node activity radiation is off the table. The confusion is that the MRI measured the HER2+ tumor at .6cm and the pathology measured .4cm+. Doc says standard operating procedure is chemo + targeted therapy for HER2+ at .5cm. Soooo...which measurement does he go with? We are getting more opinions in the coming weeks...one from a "breast cancer specialist" MO. So I was looking for opinions here. Anyone gone with no adj therapy with HER2+ and still alive with no recurrance?

I was diagnosed in December and Surgeon said it's synchronous. I am BRCA 2 + Both sides are IDC <1cm, stage 1 but left is grade 3 triple negative and right is grade 1 er+pr+Her2 -. My concern is how they will treat it. I'm having bi-lateral mastectomy 2/16/16. Then will finally meet with oncologist. I assume they will come up with a combo cocktail to cover both

I had 6 tumors in my left breast and was triple poositive on that side.  On my right breast, I had one tumor and was her2 negative but positive on Estrogen and progestron.  I was given Taxotere, Carboplatin, Herceptin and prejeta-I did not have a completely clear pathology response from the chemo.  At the time of my surgery after 6 rounds of chemo, I still had cancer.  It was removed at surgery with clear margins but still ups my reoccurence risk.

me too. Mammo in oct showed 2 new areas of calcifications in left breast. Had stereotactic biopsy on larger area and it came back grade 2-3. BS then had me do breast MRI and two suspicious areas appeared in right breast. So had 3 biopsies in late November: 2 MRI biopsies on right and anothr stereotactic in left which turned out to be small stage 1a and both areas in right grade 2-3 Dcis. So had BMX a few weeks ago.

Mine is a rather convoluted story, because I didn't do things the way we're 'supposed to'. I had a mammogram back in about 2006 or 07 that when the tech tightened the plates down, it felt like she had me twisted and it hurt. I told her, and she told me to just breathe through it and it wouldn't take long. I had only recently stopped nursing my last child, and ended up with a mastitis in that spot shortly after the mammogram (which was clear), and every 18-20 months after for 3 rounds of mastitis total. About that time I started seeing articles about the overdiagnosis due to mammogram, and what the cumulative effect on the breast might be of the radiation, and just decided I wasn't doing them any more. Thermography was beginning to be talked about, but it wasn't available in my area yet.

In 2009 I was diagnosed with celiac disease. The only change I made to my diet was eliminating gluten, and I lost 30+ pounds in about 5 months. As all that fat and inflammation began to dissipate, I started feeling structures that I hadn't noticed before, like ribs and bones that had been long buried. About that time I noticed a lump in my right breast. Of course I immediately thought about making an appointment with my doctor and with a thermographer, but I still couldn't find a thermographer in my state. My husband was about to have a job change, so I delayed my doctor's appointment until the change was completed to avoid 'preexisting condition' issues. The job change took longer than expected and by the time he was settled I'd realized this lump got irritable and inflamed around the time of my period, then settled back down afterward. My sister has fibroids in her breasts and so I just assumed that's what this was and chose to watch and wait. Nothing much changed after that, and about 2012-13 I finally hit menopause. The lump seemed to settle down and didn't do anything any more, and shortly after that my breast kind of shriveled up and my nipple inverted, and it's been that way ever since.

In June or July of 2015 I noticed what appeared to be a hard lymph node in my left armpit toward the front. I had recently banged that area on the corner of a cabinet twice pretty hard, and although I hadn't seen a bruise it was pretty sore for a while. I thought the lump was just the lymph node dealing with whatever injury the bump had caused and again chose to watch and wait. Over the next year, the lump seemed to inflame and grow a bit whenever I ate something that caused me to be inflamed (accidental gluten cross contamination usually). I tried to keep my diet really safe, but sometimes you have to eat out when you're away from home and it's a crap shoot whenever someone else is cooking for you. About March or April of this year the lump seemed to change. The skin over it turned dark and another area across the top of my breast seemed to be an extension of the lump. I scheduled a thermography (finally there was a choice a couple of hours from home). The thermography showed 'hot spots' on both sides although the one on the right seemed fully encapsulated and inactive. The left side was very ugly, with heat wrapping around my side toward the back and into my neck. She said it looked like it was 'all in the lymph' which seemed to track with what I knew of the way the lump started and felt to me. By that time there was the original lump and a second one that seemed to be attached to it that were in the area of the dark skin, and in the normal skin at the top of my breast/chest area had several soft, squishy lumps. It continued to grow and become more inflamed as I scheduled and waited for doctors' appointments. First with my primary care doc, then a general surgeon he referred me to. Because that surgeon felt that my condition was beyond the scope of his expertise (and he was a jerk to boot), he referred me to a breast surgeon that was out of my network. I went shopping in my insurance company's list of doctors and found one in my network and she was the perfect doctor for me. She did punch biopsies that showed that there was cancer in both breasts, then core biopsies that confirmed that. The pathology after my BMX shows the original lump from 7 years ago was 60mm ILC ER/PR+, the nipple area was 14mm IDC ER/PR+, and 1/27 lymph nodes had a micromet. In my left breast I had IDC 180mm (no, that's not a typo) with a separate small spot 10mm and 15/26 lymph nodes were positive, the largest of which was 30mm with extranodal extension, and that side had TNBC.

My insurance company denied a PET scan, so my doctor ordered a bone scan and CTs of chest, abdomen, and pelvis. The report said all were clear, but when I went for a second opinion about treatment, the radiology oncologist noticed my left hilar lymph node was enlarged. They were able to get the PET scan approved based on the new information and the PET showed inflammation in that node as well as a paratracheal lymph node and another mediastinal lymph node. This was all 6 weeks after BMX, so they did a biopsy to rule out postsurgical inflammation in the hilar node, which was the largest (about 3/4"). That was also positive for cancer cells, so they bumped my stage up to IV (it was IIIC originally), and started me on Xeloda. I've just finished my first week of treatment with minimal side effects, and go back in mid-October for a new set of CTs to see if it's being effective.

I do have a family history of breast cancer, my grandmother and great grandmother on my dad's side both died of breast cancer, but I did genetic testing for 8 different mutations including BRCA1&2 and all were negative, so if there's a genetic link it hasn't been identified yet.

I have bilateral breast cancer and to make it even more interesting, one side is triple positive and the other side is triple negative. I had first chemo of TCHP on Dec 5th and promptly developed ITP, so now my doctor/s want to switch me to AC+TH. I think they aren't quite sure what to do with me.

The plan was chemo first, mastectomies later, but that is subject to change now. ITP is blood disorder-very low platelets. Caused by one of the chemo drugs they gave me, because my platelets were normal going into thus. But they don't know which one. I spent five days in hospital with it after that chemo. Onc/hematologist wants me to be on steroids all the time and I'm fighting it. Can't stand the side effects. I'm so depressed about all of this. What's the point of curing the cancer if the side effects turn you into a zombie and basically make you wish you were dead anyway? I don't want to be the rare, unusual, complicated case. This sucks