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Topic: What's your ILC story?

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Jul 6, 2007 12:49PM - edited Dec 7, 2008 02:49PM by Lynn12

Lynn12 wrote:

When I was diagnosed, I came to this board and read the 15 pages of messages from other women with ILC. It was such a huge help for me. That thread is gone so I'm starting this thread so we can all post our stories.

I went to the OB/GYN in Aug. 06 and told him my right breast appeared to have gotten smaller in the past year. He checked for lumps but didn't find anything. Got my mammo in Oct. 06. They called me back for a 2nd because they noticed the right breast was smaller when comparing to my previous mammo in 2003. They still saw nothing but did an ultrasound where they did find enhancements. They did the core biopsy right then and 4 days later on 11/7/06, I was diagnosed with ILC. Surgeon sent me for a MRI which showed a small enhancement area in upper outer quadrant of right breast. Dr. wanted to do lumpectomy, I insisted on mastectomy.

treatment:
Right breast mastectomy on 12/4/06. Diagnosed with stage IIB. 7.5cm multi-focal, ER+/PR+ her2-. the cancer was found in all four quandrants of my breast. They say it's rare for breast cancer to cause your breast to shrink. There was never a lump, but felt more like a thickening.

6 rounds of TC (taxotere,cytoxan) from Jan - May 07.
30 rads from Jun - Jul 07.
Started tamoxifen May 07
Prophylatic lb mastectomy with bilateral DIEP - Dec. 10, 2007

Switched to Arimidex - Sept. 08

Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jul 12, 2007 01:11AM karen1956 wrote:

I went for my annual mammo in January 2006. the tech who did the mammo told me that they needed to get another view as they could not see everything. She was so calm and matter of fact I was not the least bit worried. Three days later I got a called back to come in for a spot compression mammo and ultrasound - now I am WORRIED!!! I had several mammos and had never been called back before. I had been for my annual gyn exam the month before and gyn didn't feel anything. Ultrasound found two suspicious spots and I was sent for a biopsy. On 2/3/06 I was told that I had BC - ILC and IDC. Then sent for MRI. MRI light up another spot on the right breast, lymph nodes and something on the left breast so sent for more biopsies. Three places of cancer on right breast plus lymph involvement. Told left was cyst. My journey has begun looking for breast surgeon, plastic surgeon, oncologist and tests and more tests. Bilat mastectomy was recommended by the two surgeons I interviewed, so that is what I decided to do - and thank goodness as the "prohy" side came back atypical lobular hyperplasia. Axillary dissection revealed 8/12 positive lymph nodes. TAC chemo followed mastectomy, then radiation, ooph, AI's (first Arimidex, then Femara) then tried Tamox, and now on Aromasin after a 3 week break from all the meds. Recon (expanders removed and gel implants put in) in March and more recon to fix the radiated side in a couple weeks. I am currently NED. BRCA testing is negative, so thank goodness my girls are not at such a high risk, other than the fact that their mother had BC. 4 more years to go on AI's. First person in my family to have BC!!! I pray that one day, there will be not only a cure, but a prevention so that no other women will have to journey down this road. Karen in Denver

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Jul 13, 2007 09:01PM MsMonty wrote:

I have a strong family history of BC..lost my mom, her sister and two first cousins both of them younger than me to this disease. So I have had annual mammo's with my pap smear since I was 35.

In Dec 04 while doing my breast self exam I noticed a thickened area on my upper left breast. I always went to my OBGYN in Jan so decided I would wait until then. I did not have my normal OBGYN because she had a baby. I told the OBGYN that I had concerns about my left breast. She said 'feels like normal breast tissue' but have them mark it when you get your mammo. I did have them mark it and two weeks later got the all clear letter. I wanted so much to stick the letter in my medical file and move on but just could not.

I called my OBGYN again and said I was not satisfied and wanted more. My regular OBGYN was now in and she said she wanted to see me. Again I heard 'feels like normal breast tissue to me' and I said "NO". Given my family history she made the appointment for me to see a breast surgeon for a biopsy. The breast surgeon said "feels like normal breast tissue to me". As I was leaving her office, however, she said "I would not lose any sleep over this BUT I did see some shadows". They said to call the next day after 2 for the results.

I called a little after 2:00pm on March 30, 2005 and heard the news, "you have invasive lobular carcinoma".

My tumor was 6CM and I started neoadjuvant chemo AC/Taxotere on April 14th. I had a bi-lateral mastectomy on Oct 7. I am grateful I had the bi-lateral as I had atypical lobular hyperplasia in my right breast as well.

Here are my stats:
Diagnois 3/30/05 ILC left breast, 6cmx4cm ER+/PR- HER2- grade 2, stage 111a Neoadjuvant chemo 4/14-8/10 DD AC/Taxotere,10/7 bi-lateral mastectomy w/tissue expanders, lymph nodes 0/13, 11/30 implant exchange, rads 12/14/05 - 1/24/06

---------------

All is currently well at a little over two years out. I had revisions on my implants in Feb and while I was at it decided to do something for ME. I had a tummy tuck and am happy as I can be about it I had nipples last month and will have tattoo areola next month.

For you newbies, rest assured life can return to normal.

Sharon
Dx 3/30/2005, ILC, 6cm+, Stage IIIA, Grade 2, 0/0 nodes, ER+/PR-, HER2-
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Jul 16, 2007 10:12PM snicklefritz wrote:

Hi- I was diagnosed with invasive pleomorphic lobular carcinoma in December 2003 at age 44. I had no clue there was even a lump because my doctor did not feel it. Had a regular mammogram and was very lucky that it showed up when it did. It was 2.5 cm and long and skinny, like a pencil. The surgeon had a hard time finding it! One positive lymph node, ER and PR positive, her/2 negative. Had dose dense chemo, 4 rounds of the AC and 4 of the Taxol. Now am taking arimidex.

What I find encouraging now is that the Adriamycin might not be given nearly as frequently in the future because some of the research seems to show that Taxotere plus Cytoxan might be just as effective. I sure hope so. The hair loss and the physical sickness caused by the Adriamycin was the worst for me.

Best to all, Mary Jane
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Jul 18, 2007 04:02PM LauraGTO wrote:

Hi Girls -
In November of 2004 I had my annual GYN visit. I mentioned to my GYN (male) that each month when I got my period, both breasts usually became sore and swollen, but that for the past 6 months, the left breast was no longer affected by this and that it was in a way, dormant. I joked and said "I think the left breast died!". He didn't seem to think it was anything to be concerned about, palpated both breasts and said everything seemed fine. (I always had very dense tissue and lots of cysts.) Then 6 mos. later, in May of 2005, I did a bse and found a pea sized lump in the left breast. Instantly, I had a gut feeling it was cancer, it was hard and most of the cysts I'd had were soft. My dh's Mom died from bc - we were both very concerned. The following week the GYN felt the lump. I was due for my 5th annual Mammo (started having Mammos when I turned 40). A week later I noticed a dimple in the spot where I had found the lump. Had the Mammo...the Radiologist said the lump didn't show up, but because it was palpable they did 8 additional views. A "suspicious" area then showed up so I had an US. The US showed 2 "suspicious" areas so I had a core biopsy. During the core biopsy, the Radiologist had a tough time penetrating the larger tumor because it was as hard as a rock, he jabbed it 15 times trying to get a core. The procedure was horrible! During it he looked at me and said, "this is not a cyst - this is really bad". I freaked out, the room started spinning, I was numb! He said I would get a call in 2 days with the results. I could barely walk out to my car. My knees were weak from fear, and a huge Hematoma developed from the biopsy and blood had saturated my blouse, the ice bag they put under my blouse had a leak and a chalky liquid was running down my legs, I was shaking, I could hardly drive...that was the worst day of my entire life. The next morning my dh took me to the ER because the swelling and pain was really bad. They said give it time. Later that night I asked my dh to come home early from work on the day they were scheduled to call with the results, because I didn't want to be alone. Sure enough...We got the call..."I'm so sorry, but you have bc. It's ILC - multi-focal". My dh was instantly, incredibly supportive and sensitive and kind and has been so = ever since. Literally for the next few weeks...we could not look at each other without crying and hugging. Had to wait 2 weeks for the Hematoma to go away (it swelled to the size of an orange) so I could have a Mast. along with a Sentinal Node biopsy. It was at this point that I asked my dh if I was going to die, and he said "not on my watch honey"...Unfortunately my Sentinal Node was positive and they found 2 tumors - 1 was 3.9cm - ILC and one was 1cm - LCIS. Both were er&pr pos. and both were her2 neg. (I had found the smaller tumor - the larger tumor was hiding behind the nipple and behind very dense tissue. I still think my GYN should have felt it during my previous yearly exams, and still wonder how he missed it.) Had an expander put in during the Mast. Because the SN was positive, two weeks later I had an Ax. Node Dis. - 11 of 11 were all neg. but I was having excrutiating pain from the expander so I had it removed during the Ax. Dis. Had 4 AC and 4 Taxol and 28 radiations (the only reason I had the radiation was because they were unable to get clean margins at the chest wall, although just micro, it was a pre-caution). The right breast continued to produce "cysts" and I continued to have US's and Mammos, so I decided this past Dec. to have a Prophylactic Mast. I couldn't live with the fear any longer. The pathology came back neg. for bc but showed that some cells had the potential of becoming cancerous...whew. I have chosen, at least for now, to not have reconstruction. I just don't think I can handle the pain. Don't know why, but I am hyper-sensitive to pain. After my first Mast. I had excruciating pain for 7 months! Tried every pain killer known to man-kind and only got minimum relief. Finally got pain blocking injections and that helped considerably. But...believe it or not...I still have some residual pain! This month marks the 2 year anniversary of my dx. So far...so good...but I worry about mets every day! I'm hoping my fear fades with time. I have been taking Tamoxifen for 1 year and 3 months. The se's are bad, but tolerable. It's great to know that all of you girls are here for support! Thank you so much! (Sorry this is so long!)
With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Aug 1, 2007 11:02PM bbmom wrote:

I was 42 when I found a lump in my rt breast in Nov. 05. After a couple of weeks of continuing to check the lump to make sure I really had something there I called my doctor. I went for a mammo, got sent for an ultrasound and a week later I was in a surgeon's office. I had a biopsy 2 days before Thanksgiving and found out I had cancer that Friday. On 12/09 I had a rt mast., expander put in and my port for chemo. Path report came back ILC, ER/PR+, HER2-,14 nodes +. I was told stage IIIC. I had dd A/T/C starting on 12/30. I cried my eyes out New Year's day just thinking about what the new year was going to be like. I spent 8 days in the hospital for a staff infection after my first treatment. I took Neupogin shots every day for 8 days after each treatment and Procrit once a week. I finished chemo 6/15, started rads 2 weeks later and in mid August I started on tamoxifen. After discussing a prophy for the left with my surgeon and onc, both felt like it would be a good thing to do, I decided that's what I would do. On 11/27 I had a lft mast and bilateral DIEP reconstruction. My onc has told me he would change me from tamox to an A1 in a couple of years.

"The Will of God will never take you where the Grace of God will not protect you." Dx 11/25/2009, ILC, Stage IV, Grade 2, 14/17 nodes, mets, ER+/PR+, HER2-
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Aug 10, 2007 04:08PM harvey wrote:

Late 2005, my left breast go hurt by the seat belt when I done an emergency stop. I found a lump, about the size of a large grape, high up on inside of my breast. I thought it was bruising due to the belt cutting into me � I�ve had that before. Any the lump stayed and got a bit bigger fast. About 3 weeks later the same thing � I drive a lot in my job. Anyway, off I went to the docs who referred me to the local breast clinic � just as a per caution.
Two weeks later I had a mammogram �an ultra sound, that was scary I could see the mass in the breast. Then a core biopsy � 20 minutes later the results were back � I had cancer.
I was given the choice of a mastectomy or a WLE with radio therapy. I choice the mastectomy but was persuaded by the cancer nurse to be sensible and have the WLE.
Two weeks later I�m back at the hospital to get more results and a date for surgery � the lump is growing it�s now as big as a small plum and can be seen through my cloths. I was given the first free spot - St Valentines day 2006
Surgery went well � the scars are very light and tidy. Then came the bad bit - a stage 3 so chemo 6xAC � and 15 big shots of rads.
I finished treatment Nov 2006 � should have been on Arimidex but couldn�t take the side effects.
I�m back at work full time � driving just as much. I wish I had had the mastectomy. Less chance of any cancer left in the breast � plus no damage from the rads. I�m in constant pain as the breast tissue has been damaged my consultant says the only thing is a mastectomy after all.
If the glass is only half full - get a smaller glass. Now your glass is full again.
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Aug 12, 2007 11:24PM 1Cathi wrote:

My ILC journey began sometime in February of '06 while showering, there it was, and the only way I can describe the way it felt was it was a feeling as if a tiny pencil point had been placed under my skin and it was trying to work it's way out, left upper outer area. I knew right from the start it was wrong, but I was getting married in May to the most wonderful man I had met 4yr before after a 20+ year violent horrific marriage, I thought it could wait just a bit longer, but for 3 months all I did was feel it & know there was something wrong, the wedding the honeymoon (my 1st cruise) were fantastic, then it was back to work and normal life, my honey kept saying everyday make a doc's app yet? No , i'll do it tomorrow, then finally in June @ work I had such terrible pain in my arm I finally called my GP, he actaully felt another lump in R, that I could not, sent me for mamo & US and scheduled an app w/general surgeon, that was June 6, June 13th I saw surgeon w/reports, Birads4, excisional on both on June 27, told I had ILC, LCIS, ALh on June 29th (L Breast) R was B9 but ALH & A million other things. I fell apart - I had cancer, for sure I was going to die @46. Had lumpectomy, and 33Rad treatments, tried tamoxifen (side effects unbearable), I have had 3 more biopsy's since all on R breast, It has been a ruff hard year, I am finally trying to take control of my life, new doc's , seriously onsidering bilat, to many scares, I can't do that anymore. I used to think that I would live a good long life, now I know that I must live the life I have been given. And that really sucks sometimes. This site has been the most helpful to me these past months I wish I had found it sooner, I thank you all!!!!

Cancer may cause my death. But it WILL NOT take my life. **** Bilat Mastectomy 10/17/08 No Recon Dx 6/25/2006, ILC
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Aug 18, 2007 01:33AM JeanOneal wrote:

It has been 3 l/2 yrs. since I was dx. with ILC. Appeared to just have a dense breast and nothing otherwise showed up in mammograms or ultra scan. Finally-because of pain under my collar bone, the surgeon did a biopsy and I was dx with a 10 cnt. tumor. Masectomy, adr, Taxol, radiation and then almost two yrs. of trying to find an AI I could tolerate. Meanwhile the cancer has spread to my intestines, stomach, tumor in right lung and in lumbar section of my spine (had radiation for that in July). Now on Faslodex, Zometa and Xeloda (chemo by mouth). Tumor markers went down for 3 mos. and now have started back up so treatment may be changed. Actually feeling quite well for all that is going on and enjoying each day as it comes. Its not over until its over and I intend to find continued answers with God's help.

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Aug 18, 2007 10:23AM NancyNY wrote:

In May 2004 I noticed a crease in my right breast. I didn't feel anything. I insisted on a mammogram, and two weeks later they told me it was cancer. According to the first biopsy they thought it "favored ductal cancer grade 3" However, when they actually looked at the lump it was 2.3 cm. ILC involving the ducts, both classical and pleomorphic. What concerns me is that it had a high proliferation index. I did dose dense ACT rads and am now on arimidex. My oncologist told me that I was very lucky that the cancer grew where it did, so it was visible on a mammogram before it got very big.

Dx 5/18/2004, ILC, 2cm, Stage IIA, 0/4 nodes, ER+/PR+, HER2-
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Sep 9, 2007 02:48AM Lynn12 wrote:

bump

Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Oct 3, 2007 12:18AM - edited Oct 3, 2007 03:59AM by neeinil

Noticed a pulling in my right breast and a dimpleing when I raised my arm. Mammo on March 31 2007 showed a thickening. It was too dense for ultrasound to tell what it was. It's funny, I noticed quite a few coments about how there was a thickening instead of a lump. Diagnosed April 10 with ILC by needle biopsy.Breast MRI in April 24 - no involvement of left breast. Right mastectomy with reconstruction [latussimus dorsi with silicone implant] on May 17. Finished 1st roungd of chemo [Adrymicien + Cytoxin] 4X and am now on second round [Taxol] 12X.

[Tumor 3 cm Nodes negative ER+ PR+ HER-]

Dx 4/10/2007, ILC, 3cm, Stage II, 0/1 nodes, ER+/PR+, HER2- Surgery 5/17/2007 Mastectomy: Right; Reconstruction (right): Latissimus dorsi flap Chemotherapy 6/25/2007 AC + T (Taxol) Hormonal Therapy 1/15/2008 Aromasin (exemestane)
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Oct 30, 2007 10:13PM - edited Feb 29, 2008 01:25AM by trigeek

History:

Started having annual mammos at age 40. The reports always showed cysts with extremely dense tissue - red flag.

Had a needle biopsy on Left breast in 2005- everything was cool.

Always insisted on ultrasound with the mammo every year to be extra cautious.

2007:Age 45 ( it seems like a majority of the ILC gals that have posted are in their 40's interesting )

Oh I am happy, maybe all the weight lifting I am doing is perking up my breasts. My right one looks really good. I am doing my self exams monthly it is just one perky boob, well the left one is also kind of perky although not as much..

01/07 annual ob-gyn exam, told him that sometimes there was a slight puckering on the right side, he examined and said everything seemed normal.

03/07 - there is a thickening on my right boob let me feel how my left one feels.. oh well the same thickening is also there (although a lot less ) so it must be the structure of my breasts.

07/07 - annual mammo with ultrasound showed the beast in right breast like a snowstorm on radar.

Was offered lumpectomy, opted for bilateral mastectomy with SNB.

Surgery result : multiple nodes of ILC in the right breast, left breast was 'collateral damage'

2/6 SNB positive for cancer. (.2 mm and 2 mms)

Stage 2b, grade 2.

ER/PR+, HER-

Tumor: 2.5 cm.

Currently on AC then will go on to Taxol.

Do not know what I am supposed to do next, since one group wants me to have more lymph nodes removed, the other says no surgery just rads.

Looking for 2nd 3rd opinions.

Agghhh !

Aylin - totally frustrated

Bilateral MX with Recon, DD AC/Taxol Rads,Tamoxifen, oopherectomy, femara, zometa "Live Deliberately !"www.aylin-yeahright.blogspot.com/ Surgery 8/31/2007 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 10/6/2007 AC + T (Taxol) Hormonal Therapy 1/3/2008 Femara (letrozole) Radiation Therapy 6/10/2008 Whole-breast: Breast
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Nov 18, 2007 05:27PM - edited Dec 8, 2007 12:38AM by golfer779

I noticed a puckering of the skin as I raised my right arm.  Went for physical (had already done regular scheduled mamo in Jan 07) my doc sent me the next day for another mamo, u/s and biopsy that was Oct 3 07.  Not a good day!!!  Diagnosed with ILC 3-4 cm ER+/PR+ and HER2-.  Had a mast. Nov 8th.  Still waiting for final pathology report.  S/node biopsy was negative.  Pre onco. appt recommended CMF lite and tamoxifan there after.  Will know more this coming week. 

Got final path report, ugh 1 of 2 nodes positive, having full node dis. on 13 Nov, also they did not get clean margins at the chest wall, I guess radiation will be in my future too.  

Just found this website, its unbelievable!!!

Carol ... Currently taking Femara and had a DIEP Jan 2010 Dx 10/3/2007, ILC, 3cm, Stage IIB, Grade 1, 3/34 nodes, ER+/PR+, HER2-
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Nov 25, 2007 08:53PM NFlood wrote:

At age 30 I started with annual mammograms after a benign biopsy.  I have very dense breasts and was constantly having needle aspirations.  At age 49 in early 2007 I went to my ob/gyn for annual check up and problems with menstral bleeding and pain.  At that time I had a mammogram with US (as I have always had with my mammograms).  My GYN did not want to do a hysterectomy and suggested D&C, which I was not in favor of as the majority of the time doesn't work.  My GYN also said that she thought I should have an MRI of the breast as I had very dense and suspicious breasts.  I had the MRI and was advised to have a needle guided biopsy. We moved across the country so I followed up with a new OB/GYN who gave me a script for the biopsy.  I went for the biopsy and neither the rad tech or the radiologist could identify anything and said they would get my records from previous hospital and contact me.  In the meantime I had a TAH with removal of ovaries.  Went back to work and felt good.  After about 5 months I decided I should follow up again with the breast thing and went back to my original doctor from my home town.  She immediately sent me for another mammogram as she indicated she felt something.  I went the same day and the radiologist insisted a needle biopsy was necessary.  He said I could go back to my home and have it done, but I insisted it be done before I left as the radiologist never followed up with me after the last attempt.  That was October 8th 2007, I had a bilateral mastectomy with reconstruction and node biopsy on Oct 31st.  I did all of this with the doctors in my home town. 

The scary part is that the radiology department in my new state never contacted me.  When I inquired with them about the reports from my home state, they said they got them and that I was to receive a call to come in for a needle guided biopsy.  When I asked why I never received a call or letter, I was told it must have gotten overlooked.  All I can say is that I am so happy I had the instinct to check it out on my own.  My surgeon said that most likely the cancer grew as I started hormones after the hysterectomy.  She said if I would have waited until my next annual visit I would have a very different situation in dealing with my ILC.

Now I am struggling with hormone therapy after mastectomy.  I don't like the side effects and I thinking I do NOT want to take them at all.  Any suggestions?  I am just confused these days.

NFlood Dx 10/9/2007, LCIS, 1cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Dec 4, 2007 05:51PM carstell wrote:

  10/23/07 first mammo ever(turned 40).was told i needed to return due to abnormality. area showed up in left breast went straight to ultrasound and was told I was going to need a biopsy.

  11/9/07 biopsy was done. Got the call on 11/12. grade 1 1.8cm ilc. surgeon wanted a MRI because he was unable to feel the tumor. MRI showed another ares onder the left nipple.

  11/27 next ultrasound,11/30 next biopsy.12/3/07 next phone call from Dr,another grade 1 ILC 8mm.

  I have an appointment with my surgeon on 12/6 to discuss surgery options.i have no family history of bc and felt no lump.

  I thank God that whoever read my mammogram was paying attention!!!!

CAS Dx 11/12/2007, ILC, 4cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2+
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Dec 5, 2007 12:06PM - edited Dec 5, 2007 12:07PM by israel

HI CARSTEL

 

Did you get the mri report????

My wife has ILC ,  40 YEARS OLD

She is after surgery Before the radiation she did mri'  (because it ILC) they found there unknown focus. She going to make biopsy guided MRI' -  they cant see it in US. ask your doctors about the mri.

 

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Dec 11, 2007 12:46AM Chgogirl wrote:

I faithfully went for a mammogram every year - never missed one.  I have very dense breast tissue and have always had lumpy breasts.  In April 2006, I had a physical.  My doctor did the breast exam and didn't like the fact that I had a thickening in the outer quadrant of my right breast.  As I had just injured myself by walking into a door jamb in the middle of the night, the doctor thought the thickening might be a hematoma and told me to come back in two weeks.  I did and the area was the same so he scheduled me for a breast biopsy.  It turns out I had a 10.2 cm tumor and my treatment was very aggressive based on the diagnosis.  I had everything - on May 30, 2006 I underwent a radical mastectomy and all lymph nodes were removed as cancer was in 16 of 30 nodes.  The cancer did not penetrate the chest wall so my stage was IIIA.  After 4 treatments of Adriamyacin/Cytoxan followed by weekly Taxol/Herceptin treatments for three months and a year of Herceptin with 33 treatments of radiation thrown in, I am done.  However, I want to know if anyone else has experienced a burning/itching sensation on their arms.  I have little bumps starting at the shoulders (both arms) and each of those bumps is like being stuck with a million pins.  The burning is intense.  I can physically see the skin turning red (similar to blushing) and sometimes the skin itches so much I feel like someone has put itching powder on my arms.  I have been to a dermatologist three times.  Her advice is "don't scratch".  This itching/burning started during chemo.  It has not subsided and no topical ointments work - whether over-the-counter or prescription.  Ice is the only thing that relieves it temporarily.

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Dec 11, 2007 04:36PM conniehar wrote:

Chgogirl - I also had a 10 cm ILC tumor that didn't show up on mamm.  I am also stage IIIa.  I was in an aggressive clinical trial and had chemo for 6 months - no herceptin though.  I am currently halfway through rads.  Glad to hear you are done, but sorry you are experiencing the burning.  You might want to post that question in several areas of this board and hopefully you might find someone in similar circumstances.  The "don't scratch" advice is classic.  I'm sure you wanted to just slap the Dr. that said that.

I'm just interpreting from your screenname, but are you from Chicago?  We have a great Illinois thread going on in the "Help Me Through Treatment" section.  If you are, come on over and join us.

Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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Dec 11, 2007 04:56PM LauraGTO wrote:

ChgoGirl - I had alot of burning, scratchy pain from my Ax Node dissection. Due to the fact that you have external irritation, have you tried Hydrocortisone? The rash and redness seems strange though...I've never heard of that. I would keep going to different Drs until one of them comes up with a solution or a dx. Best wishes to you...you've been through alot! Feel free to join our Illinois thread, as Connie had suggested. Hang in there.

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Jan 15, 2008 05:09AM Linda-L wrote:

Like the first posting here, my story starts with my husband asking, "What's this?"  It was a lump the size of a BB at the very top of my right armpit--almost my upper arm.  This was in May 2007. Went to internist, referred for mammogram/ultrasound.  Had had annual mamms faithfully for about 20 years (I'm almost 60).  Ultrasound showed small lumps in upper & lower armpit.  In the middle of all this, my mom (95) died and I had to spend 10 days dealing with that, clearing out her ap't and so on with my sisters. 

Then came home to meet with my surgeon (Dr. Gorey, what a great name for a surgeon!) for a biopsy.  She had already seen the films and knew what was up.  She said, this is highly suspicious and I see no need to put you through a biopsy. What are you doing tomorrow morning?  Uh--having surgery?  Yes.  She had already scheduled me in. 

Lumpectomy (June 15) showed 12 tumors in fatty tissue, 1 to 7 mm.  She took 21 lymph nodes, 4 were positive.  (Pretty much have to take lymph nodes when you have lumps under your arm.)  No clean margins (gulp).  ILC, stage IIB, ER+,PR+,HER-, so that was all good news.  I was scheduled for chemo but first had an MRI (radiologist told me to insist on one, but ins. co. approved it right away).  MRI showed a tumor in each breast, 1.5 and 2 cm.  These did not change my stage because they were small.  They were biopsied and were also ILC.  Neither one showed up on mammograms or ultrasound--tell your friends.  Also a lot of my friends had never heard to check underarms for lumps.  

July through Oct. had chemo: 4 AC, 4 T, dose-dense.  My oncologist, a great young doctor (you can tell she's young when I tell you her name is Tiffany) says ILC is mirror-image disease about 1/3 of the time.  She also told me that ILC is usually not seen with mammograms or ultrasound until it is 5 cm or larger (2 inches!).  So I was lucky to get the lumps in the armpit.  ILC is sneaky; it usually grows along the tissues in the breast and doesn't make a lump.

Dec. 4, bilateral mastectomy with tissue expanders.  Best news: path report showed that cancer was completely gone, even in the armpit that had no clean margins before!  Sentinel node biopsy on left side was negative. That was about a month and ten days ago.  I am off pain meds, starting to feel like I'm getting better, but the expanders are really uncomfortable and I'm reconsidering the whole reconstruction issue. 

One thing about surgery recovery--there were a couple of times in the first few weeks when I felt really good and went out and did too much, and then it took a week or 10 days to get back to feeling that good again.  Don't push it.  Rest.  Read good books and listen to soothing music and take your time.  Best wishes to all of you!

Dx 6/14/2007, ILC, 1cm, Stage IIB, Grade 2, 4/21 nodes, ER+/PR+, HER2-
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Feb 18, 2008 05:25PM Lynn12 wrote:

bump

Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Feb 29, 2008 12:23AM BELLA44 wrote:

Hi There,

My name is carol and I live in New Zealand, I found a lump in my right breast in october 2006, so went to my DR who referred me to Breastcare where I had a mamogram done and an ultrasound, They were a bit worried so I had this test done with these tiny needles and it came back neg. My son and I went on holiday to Austraila and when I got back, I noticed the lump had got bigger so I went and saw my Dr who then put me under the hospital, I had a core biopsy done and it came back positive, the cancer was growing underneath, I ended up having  a full mastectomy of my right breast in feb 2007  By the time this had finally happened my lump was 4cm by 4cm, GRADE 3 and 8 lymph nodes involved. I had 10 rounds of chemo and 16 rounds of radiation. The hardest thing I struggled with was losing my hair and the loss of my breast, I liked my boobs. I have'nt had a reconstruction yet as I am on a waiting list, still waiting to hear from the plastic surgeon. I had my last radiation on Xmas eve. I am now on tamoxifen for the next five years. I was so blown away when I found out it was cancer,  I was really angry with the breastcare centre, they should have sent me away for a core biopsy in the  first place and maybe it might have not got as far as it did, but 1 year on and I am over it now, I'm feeling great. I now have a full head of hair, mind you I had to dye it as it came back grey and white and I am only 44, which I consider still young.....eyebrows and eyelashes, I never realised how much I missed my eyebrows and eyelashes I am back at work full time and just enjoying my life.... I have starting walking home from work and also have joined a gym. I want to get my fitness level up and try to lose some weight as after the chemo and going on tamoxifen I have put on 10 kilos. My family has been wonderful and my husband has been fantastic. We are off on holiday in the next few weeks, just him and I. It will be grt , It was such a crappy year last year but we are on track now and I think of nothing more than beating this cancer...I have to much to live for. I have meet so many wonderful people thru this ordeal and made some grt friends, and hopefully I will be in touch with them all my life. This website is grt and its nice to realise you are not alone.

Dx 2/15/2007, ILC, 4cm, Stage IIIA, Grade 3, 8/24 nodes, ER+/PR-, HER2-
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Apr 8, 2008 01:20AM mediamaid wrote:

Hi all,
I haven't posted a lot here but spend a lot of time lurking. Thought I'd add my story.
I noticed a lump in May of '04. Had just turned 40 so no mammogram at that point. We were going on vacation for six weeks. When I got back I asked ob/gyn about it. She said it was on both sides (it wasn't) so it probably wasn't cancer. Had mammo in August. Told it was "calcification" but come back in six months. Six months later I went to a different facility for my mammo. Just didn't feel happy about the first place. They thought their might be something there so stayed after hours to do an ultrasound for me. Biopsy recommended. Back the next week for biopsy. Told only about 30% chance of cancer and if it was it was about the size of a thumbnail. Got the dreaded call - "I'm afraid it's cancer."
Next week scheduled for lumpectomy. The morning of the surgery they did an ultrasound to put the pin in so the surgeon could find the lump. Couldn't find anything to put pin in. Of course, now I know that is not surprising with ILC. Surgeon (who is wonderful) does lumpectomy and comes out after several hours to tell my husband that tumor was the size of a fist and he can't get clear margins but I've been in surgery too long so he'll have to go in again in two weeks. Two weeks later I had a mastectomy. Stats below. Always referred to as a "nasty" cancer.
Eventually did DD A/C (4 doses) and on dose of Taxol then developed chemically induced pneumonia. Very scary. In the hospital for 10 days with eventually blood transfusion. I had been taking Neulasta and my white count was always really high - off the chart.
Survived pneumonia and did 8 doses of Taxotere. 29 rads.
Less than a year later I did the Avon walk in New York City. Walked 39 miles in two days and raised $3300 for breast cancer research.
I have decided to have a prophylactic mastectomy on the other side and then finally reconstruction. Really tired of the whole prothesis thing.
I'm going to New York again in October to walk again for breast cancer. If you live nearby come out and cheer me on:-)
Jeannette

Dx 3/1/2005, ILC, 6cm+, Stage IIIA, Grade 2, 9/14 nodes, ER+/PR+, HER2-
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Jun 19, 2008 02:21AM Lynn12 wrote:

bumping for new ILC girls

Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jun 20, 2008 05:33PM judy60 wrote:

My  ILC story started in March of 08 I was removing my bra to shower and noticed a lump. Primary dr sent for mamo it took until May 07/2008 to find out I had ILC stage 2  2.6cm.  Went thru many test and am scheduled to have my surgery June 24.2008. Right mastectomy with Diep.  I am 48 no bc history

Dx 5/7/2008, ILC, Stage IIA, ER+/PR+, HER2-
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Jun 20, 2008 05:44PM Little-G wrote:

Judy,

I'm sorry.  You have a very up and down road ahead of you.  I found my lump too, I had a rash under my arm pit and was itching it and there it was.  That was about 2 1/2 years ago.  I'm glad you found this site.  There are so many women on here and a great support group.  Keep posting and letting us know how you are doing.  And throw out any questions or concerns you have.  Someone will come along to help you.  You'll be in my thoughts for next week.  Stay strong!

g

Dx 2005, ILC, 1cm, Stage IB, Grade 3, 0/3 nodes, ER+/PR+, HER2-
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Jun 22, 2008 03:19AM Gitane wrote:

judy60, Your surgery is just around the corner. We'll be thinking of you.

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Jun 22, 2008 03:25AM Lynn12 wrote:

Judy,

Best of luck with your surgery! Send positive thoughts!

Lynn

Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Jun 23, 2008 05:19AM - edited Jun 23, 2008 05:58AM by jane59

MY story started on Sunday Jan 13th. at 5am when I was woken up by severe pain in my left breast. 1/2 an hour later I went back to sleep. The rest of the day my breast felt a bit tender and by the evening the pain was coming back I also thought my breast felt swollen got hubby to check and he thought it was too.
Decided to make an appointment to see my doctor. While lying in bed that night it suddenly occured to me that it actually felt like mastitis.

Monday 14th got an appointment for Wed Jan 16th(my 49th birthday) wasn't concerned because it was starting to settle down although as the swelling went down I thought I felt a lump. There is no history of cancer in my family.

Fri Feb 1st had a mammogram & ultrasound. They recommended a core biopsy and I was lucky there was an appointment available 1/2 an hour after I'd finished my tests.

I had made an appointment to see my doctor on Wed 6th of Feb but at 8-30am on the Tuesday they rang me to say doctor would like to see me ASAP. I knew then that it wasn't good.

When I saw her she said "I'm sorry to say it's cancer. I had a 2.6cm lobular invasive carcinoma. She tried to ring the breast surgeon from her office to get me in ASAP but he was out on rounds and would have to get back to me. That afternoon the surgeons office rang with an 8.20am appointment for the next day. 

Both my GP and the breast surgeon had trouble finding the lump it was easier to feel standing up.If I hadn't had the pain I don't know if I would have found it because when I did remember to self examine it was usually lying down in bed.

I had surgery (lumpectomy) on Tuesday 12th Feb and all went well. I was lucky that the surgeon was able to do the SNB from the original incision so even though I still have the soreness from where the nodes (3) were taken I haven't had to worry about the second cut and was able to come home without any drains. Margins were clear.

In main pathology report nodes are classed as clear but there is an additional paragraph from where they had looked more in depth which showed some rare scattered cells in 2 nodes. My onc says it's more than likely they were disturbed during surgery but because of that he changed my chemo from 4 x FEC to 6 (last one tomorrow YAY)  Also because of that I will be having rads to the axilla, due to start July 15th

Dx 2/5/2008, ILC, Left, 2cm, Stage IIB, Grade 2, 2/3 nodes, ER+/PR+, HER2- Dx 12/6/2018, ILC, Stage IV, metastasized to bone
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Jun 26, 2008 03:51AM - edited Jun 26, 2008 05:04AM by SammieKay

Hi fellow "lobs",

This is the first time I have posted here.  I was diagnosed in Nov.06.  I finished chemo last July  07.  I opted out of radiation as I had bilateral mastectomies and there were no breast cancer cells in any of the tissue removed.  Couldn't see what good radiation would do.  I have an oncologist at MD Anderson in Houston and one here in Victoria,TX.  The onc at MD ordered my chemo and the onc here in town administered it.

The onc. at MD told me he didn't do any post testing because it "would just drive me crazy".  He said they show a lot of false positives and you go through a lot of biopsies and tests that are unnecessary.  He also told me if I had a recurrence, I was incurable and would be on aromatase inhibitors.  I take Arimidex everyday.  I am 68, post menopausal and feeling great.  The Arimidex side effects seem to have lessened.  I have been on it for 10 months.

I was originally diagnosed with ductal and said to be small, not requiring chemo or radiation.  Just Arimidex.  But after the lumpectomy, the diagnosis was changed to lobular, 4.5cm with a microscopic drop of the dye in the sentinal node.  Actually there were 2 microscopic bits in one sn and one in another.  The doc at MD said they don't call that positive, but they don't call it negative either.  He said they didn't really know what it means.  So, being on the border for needing chemo due to the size, I opted to take chemo.  I wasn't too well informed at that time and didn't know that the chemo really doesn't do much for lobular bc.  Oh well, I felt like I was doing something.  I was, poisoning my body.LOL 

My mom died from ovarian cancer.  She lived 7 years past her diagnosis.  Pretty amazing.  Many of those were good quality.  The CA-125 is quite accurate to diagnose ovarian cancer.  My understanding is there isn't such a marker for breast cancer,  If someone knows of a good one let me know.  I will certainly ask for it.

I lost a 37 y/o niece to breast cancer in Jan.  She was diagnosed at age 32.  She had 3 young children.  She fought it with any and every clinical trial MD Anderson had to offer her.  She wanted to live until her children were older.  She saw one graduate from High School and one a senior and  the other one a sophmore.  Bless her heart.

I see the onc every 6 months.  He doesn't draw blood.  I do see my Internist every 3 months for blood work because I am on a statin.  She checks all my things that need to be checked for bc, so I feel good about that.

I am going through reconstruction, but it is not that great.  My breasts were D and now the implants don't have very good projection.  One is better than the other.  I have Mentor "gummy bears".  He also got one nipple to far toward my armpit.  The other is in a good place, but that is the implant that looks much smaller than the other.  I am scheduled for a revision in Sept.  He is going to change out the "flat" implant for a larger one.  They just don't look like real breasts to me.  I am resigned to the fact that man cannot make what God makes.  I was not a candidate for a tramflap and I just didn't want to go through a long operation for a latismus flap or a DIEP.  So I opted for expanders followed by implants. I am thinking maybe I have too much skin left from the mastecomies and that allows the implants to "ooze" out and flatten out.  They aren't very pretty.  But, I am glad to be alive and I am really feeling good these days.  So, Hallelujah and Praise the Lord.

Well, I think I covered everything, even though I think I jumped around  a lot.. 

I am glad to find this thread and will keep in touch.  I loved reading posts from the longtime survivors.  That is always encouraging.

Hugs to all, Sammie Kay


Dx 10/5/2006, ILC, 4cm, Stage IIb, 3/17 nodes, ER+/PR+, HER2- [Edit] [Delete] SammieKay
Dancingpig
Joined: Sep 2007
Posts: 148 37 minutes ago SammieKay wrote:

P.S.  The pig avatars are a sign of solidarity for one of our girls on Feb.ChemoCruisers who has had a recurrence.  Cute aren't they?  Check out "Anyone starting chemo in Feb?"  You will see a bunch of "flying pigs".  : )  Sammie Kay


Dx 10/5/2006, ILC, 4cm, Stage IIb, 3/17 nodes, ER+/PR+, HER2- [Edit] [Delete]

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"Every journey has its end, but in the end it is the journey that counts." Unknown Dx 10/5/2006, ILC, 4cm, Stage IIB, 3/17 nodes, ER+/PR+, HER2-

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