Topic: What's your ILC story?

Apr 23, 2009 12:42PM Texas357 wrote:

Hi ladies,

I haven't been back on this thread since I was first diagnosed in November and scared. I've gone through chemo, and am about to start 33 rounds of radiation. Chemo was so incredibly hard on me that I've decided to go back and get a prophylactic mastectomy on the other side later this year, and time it so that I can finish reconstruction on both breasts at the same time. My husband is all for my decision. 

May 24, 2009 04:00PM JillIorio wrote:

Diagnosed 5/21/09.  Had first screening mammogram at age 35 only because my paternal grandmother had breast cancer in her mid 70's. Started annual mammograms age 40 in 2004. Had been having regular mammograms every 6 months on left breast and annual on right breast since 2005.  I had a biopsy on my left breast for a lump that turned out to benign.  The radiolgist started watching an area of calcifications on the same breast so I kept going back every 6 months. No calcifications in right breast as of April 20. In April, the radiologist said the calcifications had started to change and warranted a biopsy.  Biopsy done 5/13/09.  Met with surgeon 5/21/09 and learned they found a 0.1cm area of ILC with 0.4cm clean margin.  Will need to go back to met with radiation oncologist 5/28/09 and then have a bilateral MRI to se if there are any other areas of concern.  Will go back for sentinel node biopsy in a few weeks and then if all goes well, will look to start MammoSite Radiation.

May 25, 2009 12:38AM hlya wrote:

I did mammogramm only once since I turned to 40, then missed the 2nd year's mammo 'cause the clinic doctor told me I only need mammo every 2 years,  (but I think even I did it last year it won't show up anything though),  now it's the 3rd year and I found the lump by myself accidentally at lower outer area (very few people got this area) - the clinic doctor said it was probably just hyperplasia 'cause it's movable and was only around 0.5cm ( I doubt that as I felt it to be bigger than that),  and he asked me to wait for a month and see whether it would shrink or dissapear, but of course it was still there, then he sent me to ultrasound directly, the 1st radiologist told me it's solid lump around 1.1cm and I need to do U/S guided biopsy as it's very suspicious,  but as I missed last year mammogram, they asked me to do both at the same time.  Mammogram didn't show anything even the lump could be felt by finger obviously,  Ultrasound biopsy doctor told me to be prepared for BC (mentally).   Then core biopsy confirmed it's ILC.  After the surgery I was told to have both ILC and LCIS in one breast,  and the lump is 1cm,  but it's weird 'cause it's close to surface and I could feel by my finger and I felt it's larger than that size........I went though worring, confusing, crying, sad, couldn't think straight (even till now), etc. like lots of other BC women....

Anyway, I read on web saying there will be more and more women to be dx at younger age (40s)  than before(earlier generation at 60's) ,  due to worse lifestyle,  environment (incl. unhealthy food), more competition/pressure, etc............ Also, it's hard to get more stats/info. about ILC as much fewer women got it.   Would love to get any updated info. about ILC. 

Jun 9, 2009 08:22PM tabby wrote:

I was diagnosed in January 09 with LCIS after a biopsy (I had to push for it as they were wanting me to just watch it for six month--no thanks) for calcifications.  I had had calcifications in left breast and fibroadnoma in the right two years prior, so I knew something was up.  The BS had to do a larger biopsy and decided to do the MRI first just to see if anything else showed up.  It showed a fibroadnoma in the same approximate area as where she would have to get more tissue so I asked her to remove the fibroadnoma at the same time.  Long story short, the ILC (tiny) was found within the tissue of the fibroadnoma (the pathologist couldn't believe what he'd found).  I decided to have bilateral masectomies and it was done on May 7.  Not for the faint of heart, but I believe these darn tissue expanders are worse sometimes!!  Anyway--celebrating the cancer is gone (as well as most of the breeding ground) and trying to move forward.  Don't have to have chemo (not worth it) but will have to make a decision on the tamoxifin (which I don't like).  My BS says to take out the ovaries as I had a lot of LCIS in the left breast.  Anyone know why?

Jun 23, 2009 12:35PM - edited Jun 23, 2009 12:38PM by kyra

Jun 26, 2009 10:00AM holtbolt wrote:

Let's help one of the good guys win for once!! Will you help a bc sister by voting today? I know it's off the topic... I hope it's okay to post... but this will only take a sec... voting ends at 5p.. vote as often as you can! TY

http://www.aeroforceone.com/index.cfm/pk/view/cd/NAA/cdid/1177058/pid/1175576

Jul 9, 2009 10:33PM dkhancock1948 wrote:

Was there someone on this thread that found an enlarged lymph node after surgery was done and rads were done? There is this lady that posted this and has had no response.  She is really anxious.

LoriL wrote:

Hello ladies!

I had bilateral mast 5/28/09 with a negative Sentinel node biopsy at that time. About 2-3 weeks ago I noticed an enlarged lymph node (a little smaller than the size of a marble) but reasoned that it was from the recent surgery. I started rads 3 days ago since my margins were close, and mentioned the lymph node to my Radiation Oncologist today. He believes it is likely from the surgery, but wants it biopsied just to be on the safe side. Now I'm REALLY worried! 

My surgeon was certain that he had identified the correct Sentinel node, but I know that they are not 100% accurate. Has anyone out there had a negative Sentinel node biopsy but then found to have cancer in other nodes???

I was able to get in to see my surgeon tomorrow- I'm hoping he will do a needle biopsy right then in the office. I swear, this is almost worrying me more than I was before the initial cancer diagnosis! I have been breathing a sigh of relief as my Oncotype Dx was low and therefore chemo wasn't needed. But, now, my mind is just racing! Help! 

Aug 26, 2009 10:29PM Lynn12 wrote:

bump

Aug 27, 2009 02:08AM anniebford wrote:

At 37, I felt an unusual area, a mass, in my breast. My husband could not feel it or see it. I went to my doc anyway. She examined both breasts and could not see or feel anything. I went to see my gyno, she did an exam and could not see or feel anything either. Because I was still concerned, she sent me for my first mammo and an ultrasound. Had mammo and usound done and both came back clear. 'Come back in three years' I was told. Five months after my first mammo, I went back to my doc because there was an orange peel texture on my breast where I had first noticed the mass. She looks at it, says that it could be cancer and sent me to a surgeon. He sent me for another mammo/ultrasound, which the experienced radiologist said was sucpicious. There was no visible mass and he reccommended a biopsy. Biopsy results showed ILC and the size/location ruled out lumpectomy. After all the run around diagnosing this, I had a bilat mx.  

Sep 20, 2009 07:44PM Gitane wrote:

Hi Isis,   Thanks for sharing your story here. (and quite a story it is!)  You were amazingly proactive for one so young.  Very best of luck.  G.

Sep 26, 2009 07:26PM kim2005 wrote:

11/05 went for routine mammo; age 43; previous annuals were fine; called back for another mammo

12/05 another mammo led to biopsy and MRI to confirm

1/06 surgery with reconstruction using latissimus and implants on left side; oncotype score of 15; two oncologists agreed on no chemo

2/09 no previous history of gastrointestinal issues but suddenly developed lymphocytic colitis; had CT scan, ultrasound and colonoscopy; nothing found but the colitis; still I wonder how accurate tests are with finding ILC mets, especially in early stages

9/09 have skipped two periods for the first time ever; age 47; abdominal swelling; will have ultrasound next week

I wonder if the tamoxifen is affecting my GI tract and swelling of uterus; feel very healthy otherwise; trying not to let fear get to me

I have asked oncologist several times about removing ovaries/having hysterectomy and he tells me not to do it BUT I'm feeling like I should reduce my estrogen AND switch to the AI's and I'm not menopausal yet; ANY THOUGHTS????

Sep 29, 2009 02:21PM val61 wrote:

Janet - do not beat yourself up about your choice.  I have a friend who was diagnosed with IDC 11/08 - had a lumpectomy, then didn't get clear margins so had more taken out - and she's still wondering if she did the right thing.    I opted for a bilateral  - one side was prophy and luckily was clear - and recon with tissue expansion - just had my "exchange surgery" to implants last week.  I really have not regretted not going the lumpectomy route.  We've heard how sneaky ILC can be....... 

Oct 7, 2009 03:14AM hlya wrote:

Hi, Kim,

From the instruction I got from the clinic, Tamoxifen would cause uterine problem,  nause/diarrhea....

How was your US result? 

Oct 22, 2009 05:12PM kim2005 wrote:

Hi Hyla,

They did find endometrial thickening (18mm - they said above 10 is abnormal), 4 large fibroids and suspected endometriosis.  My oncologist said this is not uncommon using tamoxifen.  He wants me to speak with the OB next week to discuss hysterectomy but encourages me to keep my ovaries right now.  Thanks for asking!

Oct 31, 2009 01:19PM DenverDiva wrote:

Hello Hollycan,

I love your name!  I am currently on T/C and yes I have lost my hair.  I started on 9/10 and had was losing fast by the 25th.  I shaved it around that time.  There is a thread in the chemo forum for those on just T/C.  It gets posted on frequently so it should be easy to find if you just go to the chemo forum and scroll down.  Like you my husband thought I would be spared this se, but it seems that most on this chemo do lose their hair.  This is a great site, and you will find so much support here.  There are also threads on the chemo forum for people going through treatment at the same time, so check those out too.  If you have any further questions feel free to PM me.  Just click on my screen name and it will bring you to my bio, and there is a link that says send member a private message, click that and it works like regular posting.

Best wishes, warm hugs, and good luck!

Susan