ILC recurrence

Astrid, did you say you had a reoccurence in your mastectomy side? I apologize for sounding stupid. Im sick as a dog on chemo right now and just dont see the light at the end of the tunnel and it never occurred to me that I could get a reoccurence after I had a bmx. That is so disheartening right now. Good luck to you. Hugs to all.

Melmcbee;  There is no reason to be so sick on AC.  Has your doctor not provided you with any anti-nausea meds?  If not, ask him.  You shouldn't have to suffer. Heather

Ugh! You poor thing. First off, get some acidophilus to help that belly of yours recover. It will help against the thrush and sores too.

The throat thing may be from the taxotere. I had a lot of funky stuff with my throat while getting tax.

Try bland foods with spice. That sounds stupid, right? I found that the easiest things to eat were things like Mexican dirty rice, just a tad spicy but otherwise totally plain. Plain pancakes were also OK, especially with a little cinnamon and so on.

Great news Astrid. Im doing happy dance with you....

What a relief!  I'm so happy that you got this excellent outcome.  Hurray!

hi everyone, have not been on board in awile.  Half way through ac/ breezed through it! only slight problems...little blisters on lip...no big deal. Still feel bilat was the smartest and best decison.  One chemo nurse had same diag. as me same surgeon, and onc.  But did lumpectomy, told me my decsion was the right one!   Not so terrible doing expanders....end result will be ok....as long as my clothing is on!  just want to look like I have boobs when I wear nice things...Best wishes to all for 2013!

hi, had 1.9cm in right breast ILC, had bi lateral mast. oct 2012....feel so confident that this was the best decision!!! this is a very sneaky type of bc....the bi-lateral was emotionally alittle difficult...surgically not difficult.....hardly any pain. in and out of hospital less tha 24 hrs! reconstruction started with expanders...again not difficult!felt I had to be aggressive...doing chemo act last treat of cytoxin this week...again slight reaction to chemo...4 more treatments of taxol and I am done.  As far as recurrence....its in god's hands...we can only control so much, Best wishes to you hope this helped!

Bettyboo - Not to split hairs, but when I go to this article, the date is December 2011 instead of 2012.  Do you know which date is correct?  Thanks for sharing.

I know it’s been many years since the initial post but wanted to chime in. I am going Friday for additional mammogram images and an ultrasound bc they see 2 well defined, circumscribed nodules in my remaining breast. In 2010, I point blank asked my breast surgeon if I should remove the healthy breast too and she said it wasn’t needed. Had she recommended it, I would have had it removed too but she did not. Now I’m learning for the first time ILC tends to be bi-lateral, so I don’t understand why she didn’t recommend a bi-lateral? Was this information not known in 2010? I absolutely should have had bi-lateral mastectomies. Exactly why you had both removed was to avoid what has become a Déjà vu nightmare.

I wonder what percentage of women who have a single breast mastectomy or lumpectomy end up having a reoccurrence in the other breast. I think my surgeon also said that it's not necessary and she's at a teaching cancer center. Does anyone know the statistics?

Hi Eve, I had IDC in 2003, 1 cm, lumpectomy, re-excision, chemo, radiation, I tried Tamoxifen for a few weeks and gave up, feeling I already had over-kill with treatment.

15 1/2 years later, Dec 2018, I was diagnosed with ILC. I wanted a bi-lateral mastectomy without reconstruction. I went to a cancer hospital. My breast surgeon, while highly educated and skilled, as well as super nice, flatly said NO! He told me they don't remove healthy breasts! Oddly enough their newsletter that came out this month featured a women who had the BRCA 2 gene and had a BMX without having breast cancer. I'm not saying that woman shouldn't have had that done, but it made me angry because I had a recurrence and still couldn't have both breasts removed!

My cancer was only found on the ultrasound and I am very concerned I have it in my other breast. I'm asking for an ultrasound of that breast the next time I see him, if he refuses, no problem because my gynecologist will give me a script for one!

Sorry for not having any answers but I really understand where you are coming from

Jessie, I think a lot of MOs don't even know that much about the specifics of ILC. They treat it the same as they would IDC.

Let us know how it goes.

Claire in AZ

False sense of security, you can say that again. I was beyond shock and disbelief when I was diagnosed. Absolutely no family history, no risks as far as health, bmi, exercise, lifestyle or genetics. However, I never knew I had extremely dense breast tissue. All those mammograms it was never mentioned. I found out after I was diagnosed.

Thought I'd share my experience with ILC. For years I received the post mastectomy letters about my super dense breasts. I had 11 cysts aspirated or removed in the 8 years prior to DX. These were all found by me. I specifically asked my Gyn for regular US and MRI. His response; "Mammography is the standard of care, we only pursue other if mammogram shows the need."

I began paying extra each year for 3D mammos. This is how my cancer was found. My BS and radiologist showed me the regular and 3D pics. The regular mammo showed nothing. The follow-up on MRI was BIRAD 5. There was also a spot of ATHP not seen on either mammo.

My BS spent 1 hour with us explaining all options, even drawing pics of what she would do if I chose lumpectomy or MX. She told us that ILC is sneaky and does have a higher risk of jumping to the other breast. I opted for DMX, as I no longer trusted screening methods, & didnt want to go through this part again. I know i could have a reoccurence at some point. My MO also spent a lot of time discussing ILC'S differences, treatments and mets patterns. I adore my team, and have switched GYNs.

A dear friend was diagnosed a year after me with ILC and IDC detected in one breast. Her surgeon was in the "we don't remove healthy breasts" camp and strongly discouraged the BMX idea. She didn't discuss or provide info on the cancer types. During MX it was found additional tumors and that 2 lymph nodes were positive. After axillary dissection her surgeon said "you'll need to be really aware of the remaining breast." My friend says now she wishes she had gotten a second opinion from the start. Her MO is somewhat dismissive as well.

It just amazed me how different physicians can be when it comes to patient care, empathy and partnering.

My friend and I support each other and our conversations are now less about cancer and more about wine, food and gardening.

Hugs to all.

Hi Eve, I’m so sorry to hear what you are going thru. My cancer was found in 2010 as well. TWO MONTHS PRIOR TO MY SCHEDULED MAMO I found a lump on left breast, 10 o’clock area. I had a Mammo, followed by a ultrasound. Radiologist said to re check in a YEAR. My “GUT” told me to have a lumpectomy. The surgeon said he could aspirate the lump instead of disfiguring my breast, but I knew the lumpectomy was the right chose. Turns out, the surgeon said if he would of aspirated the lump, he wouldnt of found it. It was the tissue under the lump that was ILC with NO clear margins!My breast care surgeon explained to me that Invasive Lobular Carcinoma will eventually move to the other breast and recommended a bi lateral mastectomy with reconstruction. That is what I chose with silicone breast implants. Prayers and hugs to you.

I haven’t been here on the board for some time. So grateful for everyone’s support here. Question,has anyone had cancer or autoimmune disease occur from the implants? I am having symptoms of one or both and could use some support here if anyone knows anything or is going thru similar issues.