Recurrent ILC

Hi Cathleen, I'm so sorry to here about your ovaries, and, yes, there's every chance it's no where else. I'm currently going thru chemo for ILC, and likewise, was pre-meno when the chemo started (haven't had a period since. ILC is quite different than IDC, and doctors need to start treating it as such. ILC is less likely to spread to the lungs, liver, etc. but tends to spread to ovaries or gastrointestinal tract more than IDC does. I'd like to know what your original tumor size was, if there was lymph node involvement, how old you were and what course of chemo you had. - Ann

CAthleen, I do have side effects from tamoxifen...mainly achilles heel pain (so bad that mornings, I hobble like a 90 year old woman) and I used to run 15 miles/day, jump rope, lift weights...blah, blah...my husband, who is 17 years older than me, has an easier time doing our 5 mile walk than I do .  I also had some spotting and some ovarian pain, which is when I freaked out reading your story.

Dearest Cathleen, I am soooooooooooo sorry you are dealing with this and I hope and pray your ovaries were the last area that stupid cancer touched you.  Your post proves that sometimes, no matter what we do, the outcome is less than we'd prefer.  My oncotype DX score was 20, and so I opted out of chemo...and I second guessed myself for the last 2 years.  Here you are doing chemo and still had a recurrence.  STUPID CANCER!

 I opted for mx because of the following reasons:

#1.  My husband is not a "boob guy" so it was not such a tramatic thing for him as it is for me.

#2.  I was told I would require 6 month mammogram/6 month MRI for the rest of my life.  My mammogram and my ultrasound did not find my cancer.  MRI was the only thing that found it and they went by 3 dreams I had and a gut feel...NOTHING showed it and even my Breast surgeon could not see it/feel it on anything I brought in.  He was SHOCKED that I found my own cancer.

 #3.  I had fairly large breasts---34Ds and after lumpectomy, I knew rads might make the right (already smaller breast) even smaller.

#4.  I did not want radiation.

secretly, the thought of not schlepping around the D's would be easier on my back...and my DH said I look so much younger with them gone...but I do miss the sexual sensation. 

Hi Cathleen,

     I was diagnosed with ILC in Sept 2002. I had a modified right breast radical mastectomy, then agressive chemo, 8 months later a profilactic left breast modified radical mastectomy. With ILC HER+, I wanted to be as agressive as possible with treatment. 3 months earlier I had a full hysterectomy, which the team of Doctors said that it was to my advantage because the cancer can move to ovaries, liver, lung, bones, etc. I am sure you have heard that speech. You did not mention if you still have your right breast, if so you may want to consider a breast MRI. My experience with diagnosis is ILC can be hard to find. I had very large breasts and mamo's failed to reveal the cancer, it was my agressive surgeon who spotted little dots in an ultra sound that he saw so he sent me for a breast MRI . That's how the cancer was found, it was over 4 cm, not a single mass but stringy, and could not be seen easily. I also took tamoxifin, tried aromatase inhibitors but I could not tolerate them for the same reasons. I stopped tamoxifin after about 3 years, it made me very sick and eventually toxic to my system. I hope this helps. Be strong. Cheri

When I was diagnosed with ILC  at age 49, I had also been comtemplating a hysterectomy with BSO for fibroids.  I had been on BCP's for years to control pain/bleeding from fibroids.  I went ahead and had LAVH/BSO at the same time as my lumpectomy. My oncologist and gyn both recommended it since there is an increased risk of ovarian cancer with ILC. I think they said 4x more likely to get ovarian cancer and that was with no family history of breast or ovarian cancer.

I am glad I had it done. One less thing to worry about

lynn1575 - Do you have any idea where your oncologist and gyn got that information, about women with ILC being 4X more likely to have/get ovarian cancer? None of my doctors has mentioned this. It can be hard to find good detailed information about ILC - it's so often lumped in with IDC. But I haven't heard that anywhere, and that seems a bit high...

Kleenex and mom------everything I've read says anyone with bc has 2x the risk of ovarian cancer (not 4x) as the general population. (that's also what my docs stated when they were worried I had ovarian ca---fortunately everything removed was benign)

Anne

I was dx with Grade 3 ILC with 5 +nodes in apr 2010.  I have had bilat BMX and am now having chemo and then rad.  My onc is recommending that my gyn do lap surg to find the single ovary left after uterus and other ovary removed 17 yrs ago.  He is worried that it could cause a metastatic recurrence especially since my tumor was very ER/PR+.  So far have not had any issues with that ovary.  Did have colonoscopy last yr that was neg.  LOL,gin2ca

My Gyn MD recommended I have my ovaries out because I was "high risk" since I had ILC tumours in both breasts. My Onc got her report and said no. I had the genetic testing which was negative. If positive she would have agreed to the ovary removal. My Onc specializes in breast cancer and said it is rare to see it spread to the ovaries. She is adamant I keep my yearly Gyn appt for exams. She feels many of her patients who had hysts have problems later with bladder prolapse, etc. At this point I'm happy not undergoing an additional surgery.