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Topic: Anyone with ILC decide on unilateral

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

Posted on: Feb 19, 2008 07:52AM - edited Feb 19, 2008 07:59AM by SusanB12

SusanB12 wrote:

Hello,

I began posting about six months ago, then took a break while trying to make it through 8 treatments of chemo first before my surgery for a left mastectomy.  Well surgery is next week.  I decided just to go with the left mastectomy first and see how I feel after that. I still am afraid I am not making the right decision to do both at one time.  Especially since I have symptoms of something under my arm over there but they have found no cancer so far there.  Has anyone with ILC opted for unilateral instead of bilateral and how do you feel about that?  I know I can still go back for the other one with or without reconstruction.  The surgeon recommended taking one step at a time. I will need radiation after the surgery. The surgeon also said that because of the radiation I will not be able to have an implant on that side for reconstruction? Does this sound right? I didn't want to have the other kinds of reconstruction but am trying to keep an open mind.

thanks,

Susan

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Feb 19, 2008 08:20AM LauraGTO wrote:

When I was dx'd I only had the ILC/left breast removed. But then...after the pathology came back showing a second tumor that was LCIS...a year later I had the other one removed to prevent a recurrence. Much depends on your pathology and how clean the margins are. Looking back, I'm happy with my decision. Although it would have been nice to have had only one Mast. But at the time, I too was told to take it one step at a time and still feel that was good advice. It's such a tough decision! I totally understand. You should also consider the symmetry issue. Will you be okay with not being symmetrical?...some girls are some are not. As for an implant after radiation...I don't know. I have not had reconstruction...but the girls in that forum can help you. Best wishes to you with your decision.
With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Feb 19, 2008 08:48AM nagem wrote:

I was in a similar situation a year or so ago and opted for bilateral surgery. I didn't want to ever get a second diagnosis, plus I wanted symmetry, which allows me to go form-free. As for the radiation issue, I too was told I was a poor candidate for implants by one of the foremost plastic surgeons in New York, though he did not count them out entirely as an option. In the end, I decided to give my body a break and forgo recon. You might want to check out breastfree.org, a website that deals with mastectomy issues. Many of the women from this board have contributed their personal stories, photos and tips. Good luck with your decision.

nagem (underthestinkwoodtree.blogspot...) Dx 9/23/2005, ILC, 1cm, Stage IIA, Grade 3, 1/13 nodes, ER-/PR-, HER2+
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Feb 19, 2008 10:22AM Lynn12 wrote:

My situation was similar to Laura's.  I had a right breast mastectomy in Dec. 06.  My ILC was 7.5cm, multi-focal and found in all 4 quandrants of my breast. There as also LCIS scattered about.  I did chemo and radiation. A year after my mastectomy, I had a proph. left breast mastectomy and bilateral DIEP recontruction. 

I could not stand the thought of MRI every six months, waiting for it to happen in my good breast. Also, I absolutely hated having one breast.  I would have rather had none.  So I am very happy with my decision. I spent a year with one breast and that was too long for me. I am thrilled now that I have 2 breasts again and can wear all my clothes.

You are right about implants after radiation. I think there is about a 50% failure rate.  My PS would not even consider doing implants on my radiated side.

It's a very personal decision, best of luck to you!

Lynn

Lynn Dx 11/7/2006, ILC, 6cm+, Stage IIB, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Feb 19, 2008 11:42AM - edited Feb 19, 2008 11:42AM by SLH

Hi Susan,

I opted for a bilateral from the get-go.  I had stage 1 ILC and LCIS in one breast only, but a family history (Mom w/ovarian c, sister with IDC), plus I have a common genetic blood-clotting mutation (Factor V Leiden) that would have made Tamoxifen or chemo more risky.

By having both breasts off I didn't have to do chemo or rads, and they didn't have to take nodes from my good side, so I have a "safe" (relatively) side for IVs and blood pressure.

sally 

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Feb 19, 2008 12:59PM conniehar wrote:

Hi Susan - I had a unilateral.  I questioned my surgeon in the beginning and because my tumor was quite large he wanted to do the unilateral and get me into chemo right away.  While going through chemo and reading these boards, I was convinced that I was going to go back and have the other breast removed.  I talked to my surgeon and he didn't give any opinion but said he would do whatever I wanted.  Plastic surgeon same thing.  Talked to my onc and he was against it - thought it unnecessary.  In the end, I have calmed down and am currently comfortable keeping my one breast.  I am having MRI's and mammos done every 6 months alternately. 

As far as reconstruction, I had surgery initially and had an expander inserted.  I did have radiation and now am schedule for an implant in 3 weeks.  I guess everyone is different, but I haven't heard that you can't have an implant if you have radiation.  In fact I was told by my rad. onc that they sometimes have to remove the expander during radiation, but usually they can get it back in and start over after.  Maybe you should get a second opinion on that one.

Good luck with your decision.  I wish you the best.

Connie Dx 3/7/2007, ILC, 6cm+, Stage IIIA, Grade 3, 1/12 nodes, ER+/PR+, HER2-
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Feb 19, 2008 01:54PM paige-allyson wrote:

I've had unilateral and plan no reconstuction. No one has urged me to have a second mast but I think about this option at times. The lack of symmetry bothers me more than the lack of the breast, very much as others have said. We'll see. I am in no rush to schedule a surgery after nearly a year of tx- want to have a little break at least Undecided. Allyson
Dx 5/18/2007, ILC, 3cm, Stage IIIA, Grade 2, 6/17 nodes, ER+/PR+, HER2-
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Feb 19, 2008 04:44PM wallycat wrote:

I was told to have lumpectomy/rads.......I opted for bilateral.

Several things played into my decision but the decider was that I was 50 at the time of surgery and more comfortable in my skin.  I also was a 34D and couldn't imagine hauling around a prosthesis that large all the time.

I agree that for me, symmetry was a calming thought.  I jump rope, walk, used to run, bike, etc...and the heavy boobs were annoying at times like that, so I figured if I had to give up the "sexual/erotic touch" aspect, I'd gain in the exercise arena....plus I'm a chicken and the thought of lowering my risk for a boob-recurrence pleased me to no end.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Feb 19, 2008 08:43PM Ihopeg wrote:

I wasn't told that I had ILC until after my one mastectomy. My dr didn't think that any nodes would be involved either.

I wish that I knew before surgery because I would have had a bilateral. Atleast it just one surgery and then you are done.

 My surgeon even now says that if there is no cancer in the other breast, let it be.

I Dx 11/11/2006, ILC, Right, 3cm, Stage IIIC, metastasized to bone, Grade 2, 19/20 nodes, ER+/PR+, HER2- Surgery 11/28/2006 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic ovary removal Chemotherapy 1/6/2007 Chemotherapy 1/9/2007 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/29/2007 Breast, Lymph nodes Hormonal Therapy 8/18/2007 Femara (letrozole) Dx 10/5/2018, ILC, Stage IV, metastasized to brain/bone, 20/21 nodes, ER-/PR-, HER2-
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Feb 19, 2008 09:06PM bean4865 wrote:

Hi Susan,

I had a unilateral in Dec. I had ILC with extensive LCIS and tram flap reconstruction. I also went crazy trying to figure out whether to go bilateral or not. I chose not. I was angry and thought this disease will not scare me or conquer me. I hope I made the right decision. My surgeon,oncologist, gynocologist and radiologist all agreed it was not necessary to go both which helped in making my decision. I don't know if maybe someday I will change my mind but for now I am confident. As my radiologist said "If you think you will live in constant fear and it might drive you nuts then go bilateral", but they will closely monitor your other breast from now on.

Best of luck to you.

Kathleen Browning Dx 10/25/2007, ILC, 2cm, Grade 1, 0/17 nodes, ER+/PR+, HER2-
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Feb 19, 2008 09:17PM PeggyDixon wrote:

Hi Susan. I had one removed at first. At the time I didn't know it was ILC either and I was so shellshocked I didn't even think about it much. After that I found that having one large breast and one large, heavy prosthesis was no fun. I was also worried about ILC in the other one. So, a year after the first, I had the second removed. It was cancer free but I have no regrets about it. Now I go around like a little boy - short hair and flat chest and I'm happy. I was told that I woulnd't be a candidate for implants due to rads but I didn't question it as I didn't really want implants anyway. It is a totally individual decision and you will do what you are most happy with. Very best wishes and hugs to you!

Peggy Dx 1/19/2006, ILC, Stage IIIC, ER+/PR+, HER2-
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Feb 19, 2008 10:31PM moonie wrote:

Hi Susan -

I had a unilateral.  For a few months afterwards I fretted a bit, wondering if I should have had them both taken when I saw so many others have made that decision.  For me...I just couldn't see removing a healthy breast.  I had a TRAM flap with reduction of the other side for symmetry 9 months after my mast.  I am very happy with my new breasts!  I am also happy that I only had one taken.  It is now 4 years later and I am still happy with my decision.  If the beast shows up on the other side, I will likely have either a Lat Flap or Gap recon....or maybe with all the new treatments and things, they will find ways to get rid of it without removing the breast at all!  You just never know!

I think you have to follow your "gut" on this one.  Do whatever YOU feel is the best decision for YOU.  The RIGHT answer is whatever you decide.  Good luck to you!  Cool

Dxd 12/03, DCIS, Mast, ILC, ooph, unilateral pedicle tram 2004
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Feb 25, 2008 03:48PM SusanB12 wrote:

Thank you all for the kind words they definitely give me something to think about.  I guess I will take it one step at a time and see how it goes and how I feel about the symmetry issue and see what my reaction will be to the surgery. I thought if I decide to go back for the other at least I will know what to expect.  I keep reading the boards about people just coming out of surgery but still I guess you never really know until you go through it. Surgery in two days. I'm scared. I try to keep telling myself I really have no choice in the matter. Thank you again for your responses.

Susan

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Feb 27, 2008 08:12PM Ihopeg wrote:

Susan,

   Good luck to you!!! Just give it a few weeks and you will feel much, much better. Smile

I Dx 11/11/2006, ILC, Right, 3cm, Stage IIIC, metastasized to bone, Grade 2, 19/20 nodes, ER+/PR+, HER2- Surgery 11/28/2006 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic ovary removal Chemotherapy 1/6/2007 Chemotherapy 1/9/2007 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/29/2007 Breast, Lymph nodes Hormonal Therapy 8/18/2007 Femara (letrozole) Dx 10/5/2018, ILC, Stage IV, metastasized to brain/bone, 20/21 nodes, ER-/PR-, HER2-
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Feb 27, 2008 08:45PM paige-allyson wrote:

Thinking about this more- at the time I had my mastectomy surgery after just being diagnosed last year I was very anti-breast and very keen on the idea of getting rid of the healthy one at my earliest convenience. This is definitely less of an issue now. After seeing my medical onc yesterday for my first follow up since finishing chemo in October and him saying that he saw no reason whatsoever to ditch the remaining breast, I feel fine with keeping it. My worries (and his ) are all about distant recurrence. So I am sticking with the unevenness which really is not so bad.

Dx 5/18/2007, ILC, 3cm, Stage IIIA, Grade 2, 6/17 nodes, ER+/PR+, HER2-
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Feb 28, 2008 02:04PM carstell wrote:

I had a leftmast 12/21. I immediately wanted both off. after a long talk with my surgeon I opted for the uni. He assured me I could always have the other removed. I felt that with everything else going on, one at a time was enough. I had an expander placed and am completely full.I started chemo 2/8. I am content with my decision. who knows what the future will bring? I am fighting the fight now.Thats all I can doSmile  Cheryl
CAS Dx 11/12/2007, ILC, 4cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2+

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