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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 06:49AM - edited Dec 7, 2008 08:49AM 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.

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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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. 

DX 9/08, ILC, Stage 3A, ER+/PR+, HER2-, 7/13 pos nodes. Mastectomy & six months chemo & 32 rads.Prophy mx 8/09 and they found DCIS and LCIS. Implant only on proph side; LD flap on rad side. 13 surgeries since diagnosis.
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May 24, 2009 01:27PM Lynn12 wrote:


Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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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.

Surgery 5/12/2009 Lumpectomy: Left Dx 5/22/2009, LCIS Dx 5/22/2009, ILC, <1cm, Stage I Radiation Therapy 8/7/2009 Breast Hormonal Therapy 9/18/2009
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May 24, 2009 07:52PM amlg1 wrote:

DX 4/22/09.I go everyyear for mammo,went 2/23/09 few days later I have to go for another view and US.The radiologist says my breast looks fine but there is a density but my lymph nodes are enlarged,does a fna in march on nodes, comes back atypical cells.Was then told to get MRI.something shows up, then had MRI biopsey and diagonosis came back ILC 2.5 cm also in 2 nodes.5/21 had a lump and BS said she took out alot of nodes.I have an appt.6/1 with BS so I guess thats when I'll find out what stage it is .Before lump she said it is between 2&3.I have a feeling it's 3.I am so scared about the chem.but I hear all of your stories and I know I have to do whatever it takes.

Anna.7/22/11 mets to spinal fluid.7/1/2011 now met to brain:( Stage IV Dx 4/22/2009, ILC, 2cm, Stage IIIC, Grade 3, 31/34 nodes, ER-/PR-, HER2+
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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. 

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Jun 9, 2009 04:27PM - edited Jun 10, 2009 12:27PM by cd1234

I am glad I found this thread. I am 37, and found a thick area in my left breast. Had a weird dream that made me go to the doctor. After a surgical biopsy, I was diagnosed with ILC on 1/15/09. I had a bi-lateral mastectomy on 2/5/09. Started 6 months of chemo on 3/6/09. I had 4 rounds of AC. Nothing fun about that, and now I am getting ready for my third round of Taxol (12 totaI) I push myself everyday. I have continued to run, work, raise my son and be strong for my husband. I can hardly wait to be done with chemo. I hate being bald and boobless.

Dx 1/15/2009, ILC, 1cm, Stage IIA, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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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?

Dx 3/4/2009, ILC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Jun 12, 2009 05:13PM cd1234 wrote:

My surgeon also told me to take out the ovaries because ILC tends to spread to them. My oncologist said no way unless I come back positive for BRAC 1or 2 positive.

Dx 1/15/2009, ILC, 1cm, Stage IIA, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Jun 23, 2009 12:35PM - edited Jun 23, 2009 12:38PM by kyra

This Post was deleted by kyra.
jan t Dx 12/12/2007, ILC, 6cm+, Stage IIB, Grade 2, 0/6 nodes, ER+/PR+, HER2-
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Jun 23, 2009 12:44PM - edited Jun 23, 2009 01:18PM by kyra

help, could someone tell me what to expect l have already had one mastectomy in january 09 l had ILC and DCIS then chemo FEC 6  and radiation 16MV  and hormone treatment,now l have seen PS and he is prepared to do bilateral and deip reconstruction, how bad is it, and how long does it take, l do want this so badly but it is down to my heamotologist as l am under anticoaglant taking warfrin,

l would be gratefull if someone could give me some advice,

jan t Dx 12/12/2007, ILC, 6cm+, Stage IIB, Grade 2, 0/6 nodes, ER+/PR+, HER2-
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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

BiLat 12/2/08, Completed 4 rounds of TC on 3/24/09 Dx 11/22/2008, IDC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Jun 26, 2009 10:45AM Kleenex wrote:

Tabby - Some oncologists suggest removing the ovaries (or shutting them down with Lupron) because they produce estrogen, and if you have estrogen-receptor-positive breast cancer, you want to limit any cancer cells' access to estrogen, which they would use to grow. So the removal of the ovaries is generally about reducing estrogen, unless you have the BRCA gene, which shows you have an increased risk of ovarian cancer as well as breast cancer. I had one onc who wanted to put me on Lupron, and the one I see now just has me on Tamoxifen.

Kyra - sometimes this forum is a little slower, as there are fewer women with ILC. For help with your questions about bilateral mastectomy and diep reconstruction surgery, you may want to look at the Surgery forum - lots of good information there.

holtbolt? Seems like an odd thing to post here...?

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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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! 

Debbie Dx 11/12/2008, ILC, 2cm, Stage IIA, 3/6 nodes, ER+, HER2-
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Jul 10, 2009 11:24AM Seabee wrote:

LoriL--Yes, it is possible for cancer cells to bypass the sentinel node, though it is rare. Cancer cells can also bypass the nodes altogether and travel by other means, which is why some form of systemic treatment is usually recommended.

By now I hope you've discovered that the node was merely reacting to surgery.

Per spem vivo. Dx 9/9/2008, ILC, 2cm, Stage IIB, Grade 1, 3/23 nodes, ER+/PR-, HER2-
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Aug 26, 2009 10:29PM Lynn12 wrote:


Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Aug 26, 2009 11:07PM DenverDiva wrote:

Lynn, thank you for bumping this thread.  I hadn't seen it before, and while it will take me awhile to read through it, I really appreciate that I know it is here. 


"The work will wait while you show a child the rainbow, the rainbow won't wait while you do the work." Dx 5/6/2009, ILC, 1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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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.  

Stage IV with bone mets 5/10 Dx 7/8/2008, ILC, Stage IIIB, Grade 2, 9/14 nodes, ER+/PR+, HER2-
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Sep 20, 2009 06:06PM AlmightyIsis wrote:

Paternal grandmother diagnosed at 26yrs old and again at 80yrs. I had my baseline at 35 and told by gyno that I was crazy, because my breast tissue is too thick and because I was too young to have BC. I kept up the mammos, regardless. I had a thickening under the left breast I brought to the Gynos attention, but he said it was just "lumpy" breasts. A year later the dimpling started toward the surface (whereas the thickening was, say, where an underwire touches) I felt that lump and went to my yearly mammo tech and pointed the area out. Sure enough, suspicious. Biopsy turned up ILC. The BS I saw took an MRI and thought it was 2cm, turned out to be much bigger. I had no nodes positive that they tested. The lumpectomy I had internally bled and I had to have an emergency mx and told the BS to take the right one, too. She said that the right breast was "healthy" and I said, yeah for NOW it is! Adriamycin/cytoxan followed with taxol and 33 rads. Tamox x 5 years (in my second) and that's about it. Lots of prayin. Hope this helps and if anyone needs to talk, I have no problem with bearing all my hx. Lobular is tricky, but supposedly slow.

Dx 11/2/2006, ILC, 6cm+, Stage IIB, Grade 2, 0/6 nodes, ER+/PR+, HER2-
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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.

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Sep 20, 2009 10:14PM KathyAlex1960 wrote:

For Lori L

My initial SLB was negative so I just had the mastectomy and no nodes removed.  When further chemical tests were done, they found "micro-metastasis".  I had to go back in surgery 2 weeks later to get the nodes removed.  I had 2 more positive nodes.  So it does happen.  My MRI was negative for cancer after the mammogram/ultrasound.  Biopsy was positive initially for IDC, with a little ILC present.  Turned out to be the opposite.  I am having the other breast removed next year - after I finish my avastin and am feeling healthy. 

Dx 12/13/2008, ILC, 3cm, Stage IIB, Grade 2, 3/16 nodes, ER+/PR+, HER2-
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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????

Dx 12/9/2005, ILC, 2cm, Stage II, 0/5 nodes, ER+/PR+, HER2-
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Sep 26, 2009 10:10PM Janetplanet wrote:

I'm 46 yrs old and after a routine mamo and then another, an area of suspicion was found. I've always had lumpy breasts so I was not too worried. Core biopsy done on July 6 and cancer diagnosed on July 7. I had a mastectomy (right) on July 29th and a sentinal node biopsy - it all happened so fast, I didn't have much time to think.  Turned out to be ILC (Stage I) of about 1.8 cm and Ductal in Situ next to it. ER/PR positive and HER2 neg.   Lymph nodes negative and Oncotype was 8 (thank you God!) so no chemo.  I'm on Tamox and Zometa. My maternal grandfather (yes GRANDFATHER) had breast cancer in his 80s and so did my maternal grandmother so I had the test for BRCA gene but it came back negative (another praise) I've had a lot of cording so I've been doing physical therapy which has helped.

The BS said she did not recommend a lumpectomy but would do it if I wanted it, but I was too scared about getting clear margins, having radiation, and recurrence.  I have not had reconstruction and probably will not (way too much pain and it won't be the same as my own) However, I have had fairly big regrets about not trying the lumpectomy route. ANYONE ELSE FEEL THIS WAY? 

I'm hoping this will pass.  I'm trying to tell myself that with ILC being like an octopus, it was probably the best choice. 

Janet Dx 7/7/2009, ILC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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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....... 

bmx w/ TE's 1/21/09; recon completed 7/9/10. "We must see all scars as beauty, okay?...A scar does not form on the dying. A scar means, I SURVIVED!" (excerpted from "Little Bee" by Chris Cleave) Dx 12/19/2008, ILC, <1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR-, HER2-
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Oct 7, 2009 03:06AM hlya wrote:

Hi, Janet,

My surgeon supported me to take at least uni-lateral mast but I opted to take bilateral mast, and she supported it as well.  But my ONC said even uni-lateral sounds to be too agressive.  So far I didn't do any reconstruction as my husband was strongly against it,  he didn't want me to experience any pain anymore.  

I don't regret at all, just like you, I am scared,  and mastectomy gave me more peace of mind....I know mastectomy won't guarantee anything from recurrence, but the chance would be smaller...

May I know why you are taking zometa?  I heard Tamoxifen mostly won't cause bone loss...why did you doctor give you this?  Thanks. 

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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? 

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Oct 7, 2009 09:36PM Janetplanet wrote:

Thanks for the replies.  I am taking Zometa because my oncologist said it would reduce the risk of the breast cancer coming back in my bones. 

I hear stories of women who have beaten breast cancer and lived 10-15 yrs, only to wake up one day and learn it has come back somewhere and is very advanced.  HOW does that happen if they are being "watched carefully"?  I feel as though I will need an annual petscan just to make sure the cancer does not "pop up" somewhere else.

I'm even wondering if I should get my ovaries removed?

Janet Dx 7/7/2009, ILC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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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!

Dx 12/9/2005, ILC, 2cm, Stage II, 0/5 nodes, ER+/PR+, HER2-
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Oct 31, 2009 10:08AM Hollycan wrote:

Just joined so I am still not completely sure how this works but here goes...

I've been "surfing the web" this morning trying to find out if I am going to lose my hair (due to Chemo) or not.  I stumbled on this website and it's exactly what I was looking for!  So cool!  I love that I will be able to connect with so many women who, like me have been diagnosed with breast cancer.  FYI, I am 40 with two young children (5 and 2) and I figured I'd start with a post on this forum (there appear to be quite a few).

 Anyways, so my question is, will I lose my hair?  I had my first chemo treatment (TC) 9 days ago  and was thinking about shaving my head this weekend because I don't think I can bear to have it start falling out in "clumps".  However, my husband is convinced that maybe I will be one of the few who don't experience this side effect and he doesn't want me to shave it.  I have heard from a few people that the TC form of chemo ALWAYS makes your hair fall out, does anyone know if this is true?

So glad I found you all, I look forward to future communications.  :-)

Hollycan Dx 8/16/2009, ILC, 1cm, Stage IIA, Grade 1, 2/3 nodes, mets, ER+/PR+, HER2-
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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!


"The work will wait while you show a child the rainbow, the rainbow won't wait while you do the work." Dx 5/6/2009, ILC, 1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Nov 24, 2010 10:52PM meme31 wrote:

bump again!

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