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Topic: I WANT MY MOJO BACK!

Forum: Sex & Relationship Matters —

A safe place to talk candidly about how your romantic relationships and/or your sex life has changed following your diagnosis and treatment.

Posted on: Oct 17, 2004 09:45AM - edited Feb 9, 2016 09:04AM by Moderators

Mena wrote:

Hey girls,

You know, this loss of libido thing is just unnacceptable. I was in the chat room earlier today and mentioned it and man, you should've heard how many of us are experiencing this problem. I promised the ladies I'd post my rant, so here it comes (or....doesn't ).

If bc were a man's disease, not only would there be a cure for bc by now, but certainly there'd be a plethora of non-hormonal therapies available for whatever the female version is of "erectile dysfuntion". I don't think I'm exaggerating. I'll make the damn commercials myself (no pride here lol).

Prior to the news of my recurrence/mets (August) my husband and I had a phenomenal sex life. I absofreakinlutely loved making love to my husband. (Btw, I'm 43; and as part of tx for mets, I was chemically oopherized with Zoladex and take Femara daily).

I still enjoy loving my love. Emotionally, spiritually, mentally, I do. Even physically I still like it. It's just not rockin' my world, as they say, like it used to. I miss that. And I refuse to accept this as acceptable. It is not. If the genders were reversed, this would be the first &%$#* problem they'd address! Well, ok, the second.

I know the clinical reasons for the low libido, but there's got to be something out there for us that's not contraindicated with treatment. Here's what I've tried so far: a Zen approach; a "go w/the flow" attitude; a "get started and it'll all just kick in" mindset; a "try not to think about it at all" focus; et al.

I'm interested in hearing what the rest of you have to say about this matter, and I know it is an intimate one. But we're all sisters and I do hope some of you will share your experiences and whatever help you've found for missing mojo.

Thanks for letting me vent. God Bless.

Mena

****************************Addition from February 4, 2016***********************************

Hi All,

We've gone through a lot (not all) of the pages on this topic, and tried to compile your suggestions.

Do you feel that this is a complete list of what has been discussed here? Please help us make a comprehensive list of your ideas!


Member suggestions for helping the libido:

Watch romantic movie or soft-porn on Netflix

Romantic music

Watch porn or visit short videos on Tumblr, YouTube, or other internet site

A little wine, or other substance to help relax (e.g. medical marijuana)

Sexual photos

Massage and massage oils

Literotica: Erotic/sexual stories as an alternative to images

Super sexy lingerie or fun clothing

Have partner practice foreplay and/or oral sex

Practice masturbation on a regular basis

Mindfulness, i.e. focus on what your five senses are experiencing in the moment --To keep your thoughts from dwelling on cancer and scars


Member suggestions to improve vaginal moisture:

Coconut oil works best as a moisturizer (freeze small balls to make suppositories)

Vitamin E suppositories

Almond oil

Replens long-lasting moisturizer

Luvena vaginal moisturizer

Shea butter melted into olive oil at a 2:1 ratio

Cocoa butter

Olive oil

Gynatrof gel

DHEA vaginal suppositories

Tip to use an applicator to insert moisturizers and apply a few times a week.


Member suggestion for lubrication during sexual activity:

Astroglide Natural (free from glycerin, fragrance, flavorings, and hormones)

Slippery Stuff (free from glycerin and parabens)

K-Y warming Jelly

K-Y Sensual Silk Liquid (paraben-free)

K-Y Liquibeads

K-Y UltraGel (paraben-free)

Astroglide, X (silicone-based)

Platinum Wet (silicone-based)

Replens silky smooth lubricant (silicone-based)

Sliquid natural lubricants (free from DEA, gluten, glycerine, glycerol, parabens, PEG, propylene glycol, sorbitol & sulphates)


Additional member suggestion to reduce pain:

Topical Lidocaine solution for use at the entrance of the vagina


Member suggestion for sex toys:

Vibrators (e.g. Hitachi Magic Wand, Pink Dot Vibe, Pocket Rocket, the Rabbit)

Dildos for pleasure, to stretch the entrance, prevent vaginal atrophy and strengthen muscles


Member suggestion for estrogen or hormone-based treatments

(MUST discuss first with oncologists as not typically recommended for women who have had breast cancer)

Vagifem® (estradiol vaginal tablets) inserts

Testosterone patch or gel

ESTRING® (estradiol vaginal ring)

ESTRACE® CREAM (estradiol vaginal cream)

Scream Cream - contains a combination of prescription and non-prescription components described as blood flow enhancers and vasodiolators to apply to your clitoris (adding here, as it contains a bit of Testosterone- 0.25mg per dose)


Other member suggestions:

Kegel exercises to strengthen pelvic muscles

Pelvic physical therapy

Dilators to stretch the skin in your vaginal area and re-train the pelvic floor muscles to relax

Observe which antidepressant you take, and make necessary changes

MonaLisa Touch: A minimally invasive laser treatment for vaginal rejuvenation.

Easier if she "goes first".

Regular activity is important.

Read the book, COUPLES CONFRONTING CANCER: KEEPING YOUR RELATIONSHIP STRONG, by Fincammon & Bruss, published by the American Cancer Society.

Share this thread with your husband/lover to create a new bond of intimacy, normalize what others are going through and open communication.

Take a look at this resource: https://sexualityresources.com

Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Nov 8, 2017 05:35AM Trvler wrote:

Merchie: It think you need to look into some therapy. Your issue is outside the scope of a public forum. I hope you can come to the point where you realize your husband loves you and is attracted to you, imperfections and all.

Allison Dx 1/16/2015, ILC, Left, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- Dx 2/26/2015, ILC, Left, 4cm, Stage IIIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- Chemotherapy 3/24/2015 AC + T (Taxol) Surgery 9/1/2015 Mastectomy; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Radiation Therapy 10/15/2015 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/1/2016
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Nov 8, 2017 08:56AM stephaniebc wrote:

merchie, i agree with the above poster, you should address your self-image issues in therapy before it destroys your relationship. your new husband is obviously a loving person and he desires you just as you are. don't let the ugly words of another man come between you and him! pornography is a normal and healthy aspect of human sexuality and you should not feel threatened by it.

Dx 11/2016, IDC, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2+
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Nov 8, 2017 02:03PM beach2beach wrote:

Merchie,

I feel for you. I had very small boobs, geez almost flat chested. All my life between jokes of being flat as board, yadda yadda, I was never comfortable with my body. I figured at first glance a new boyfriend would flee after seeing my padded bra come off. lol. I never felt adequate in that department. We have this picture of what we think men like. They look at porn, (so do women), they look at big chested women, big assed women and all that. Nature. it's hard to not feel that we are not being compared. That they wished we looked more like this or more like that.

Eons later I'm diagnosed with bc. I could not even get bigger boobs out of the deal! No fat for DIEP, skin too tight to do tissue expanders, so got implants that maybe make me a rounded A+ lol.

My point is, the ex ass, is an ex for a reason. This guy loves you. Try not to base his looking at porn that it means he's looking for perfection. Porn isn't real. You're real.

Talk to a therapist, someone who can help you to squash those negative words the ex left on you. Speaking from experience, it can make a world of difference.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/11/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 9, 2017 07:44AM TarheelMichelle wrote:

Going back to runor's question. One suggestion I didn't see mentioned (I read through quickly) is to put moisturizer on your girly parts BEFORE you get in the tub. I love a bubble bath. I use Lush bubble bars because the suds are gentle and it's the only product I've found that leaves a tub full of bubbles even after a long soak. I apply moisturizer before I get in. I use Mary Kay Extra Emollient Moisturizer, externally not internally. It had the consistency of Vaseline so it's water resistant. Coconut oil may also work, inside and out. I also sip a healthy beverage, and make sure to pee when I get out

Ronda - Extensive mets to lungs & bones. 9/13, subcutaneous skin mets. My life is Stage IV precious. Celebrating 6 years with Stage IV 12/2017. Ev Dx 2/14/2008, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 3/10/2008 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 4/16/2008 Dx 12/19/2011, Stage IV, metastasized to bone/lungs, mets, ER+/PR+, HER2- Hormonal Therapy 1/31/2012 Aromasin (exemestane) Hormonal Therapy 12/19/2012 Faslodex (fulvestrant) Hormonal Therapy 7/16/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/23/2014 Reconstruction (left) Radiation Therapy 11/21/2014 External: Bone Targeted Therapy 11/17/2015 Afinitor (everolimus) Targeted Therapy 5/20/2016 Hormonal Therapy 6/1/2016 Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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Nov 17, 2017 02:43PM Trvler wrote:

I just wanted to come here and tell you guys that things in the sex area have gotten better. I still don't have much of a drive, but I am subscribing to the use it or lose it theory and doing it anyway. For the first time recently, I was able to skip the lube! Yeah. I have been using topical estrogen for a few months now.

Allison Dx 1/16/2015, ILC, Left, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- Dx 2/26/2015, ILC, Left, 4cm, Stage IIIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- Chemotherapy 3/24/2015 AC + T (Taxol) Surgery 9/1/2015 Mastectomy; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Radiation Therapy 10/15/2015 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/1/2016
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Nov 17, 2017 03:11PM - edited Nov 17, 2017 03:12PM by Lula73

Hi Ladies! Just had hysterectomy with oophorectomy & salpingectomy 2 weeks ago. My mojo was just coming back after stopping tamoxifen. Had maybe 2-3 weeks of sex drive. Obviously sexy time is a no-no for at least 4 more weeks but worried to death about atrophy. I had my hysterectomy in NOLA during my stage 2 DIEP surgery. I asked the OB/GYN in NOLA about Estrace and Premarin-both were a no for me due to blood clot risk. He said none of the hormone creams were technically given the ok by the FDA for use in women with history of breast cancer. He recommended Intrarosa instead. I looked it up and the Prescribing Information has way less information listed under Breast cancer compared to the other hormone creams on the market and nothing about blood clot risk. He said it was still kind of new to the market. Wondering if anyone has tried Intrarosa yet?

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Nov 17, 2017 10:34PM runor wrote:

THanks for the tip, Tarhee.

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 18, 2017 09:57AM Rosabella wrote:

merchie, I think what you are feeling is normal. You have a bad ex who knocked you down so you are more apt to notice such stuff and worry. I do know some couples do look at porno and members of the opposite sex on the street and are fine. I've had it explained to me that porn can enhance the relationship by teaching techniques. I guess it depends on the guy or gal. Hard to tell. As said it would benefit you to see a therapist and if suggested a marriage counselor. Good luck.

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Nov 19, 2017 10:54AM chicopeach57 wrote:

Lula, just started Intrarosa a couple of weeks ago, can actually skip lube sometimes, feels good to produce my own. Two draw backs - gives me weird dreams, messes with my sleep and it makes me not taste good. It is a vaginal suppository with a petroleum base I think, but it seems like it is too much per dose, I feel like it is all over the place in the morning. Thinking about cutting it in half. It is also a little pricy

A strong person is not the one that does't cry. A strong person is one who is quiet and sheds tears for a moment and then picks up her sword and fights again. Ash Sweeney Dx 11/13/2013, IDC, Right, 1cm, Stage IIIA, Grade 3, 4/11 nodes, ER+/PR+, HER2- Surgery 11/22/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Radiation Therapy 5/19/2014 Breast Hormonal Therapy 5/23/2014 Femara (letrozole) Surgery 12/9/2014 Reconstruction (right)
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Nov 19, 2017 07:38PM Lula73 wrote:

thanks for sharing your infrareds experience Chicopeach! We’re you having issues and then you started it? Any comments made by your Doc about it? I’m really worried my OB/GYN at home may have a problem with it since it’s newer.


Merchie-all porn is not created equal. Women & men are very different when it comes to what that visual preference is. However if you were to ask your DH if you could look together and you googled key words based on what you’d like to see (i.e. ‘romantic erotic images’ vs just ‘porn’). your DH may actually end up more turned on than he is just looking at his usual ...all because you’re taking an interest and he doesn’t feel judged. Good luck to you

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Nov 20, 2017 08:38AM chicopeach57 wrote:

Lula, my gyn is the one that told me about Intrarosa. I have been using estrace cream for a couple of years, it works pretty well but thought we should try something new. Also it is supposed to be less risky than the estrace, which my MO is fine with since I take Femara. I was post menopausal when I was diagnosed and still did not have ANY problems with dryness, which I really appreciated. Discovered during chemo what can happen to the hoohaw. Even with the estrace and lube I can have some tearing and friction burn now. Have to have the correct angle of entry and not too fast. Mind you, hopefull this isn't TMI, my honey is on the smaller side of average, if he was large I think I would give it up and cry :) Cancer just sucks.

Merchie, I find that just listening to good porn is enough for me, can't see without my glasses anyway. Will watch some but it cannot look like the women are unwilling. Have found that men that watch porn are not expecting the same looks from their girlfriend, most know this is a fantasy world. Just like we would not expect them to look like the firefighter calendar. I should do an erotic audio tape for myself. Have you thought about maybe a beautiful tattoo, there are some awesome mastectomy tattoos. Maybe talk to a therapist about that.

A strong person is not the one that does't cry. A strong person is one who is quiet and sheds tears for a moment and then picks up her sword and fights again. Ash Sweeney Dx 11/13/2013, IDC, Right, 1cm, Stage IIIA, Grade 3, 4/11 nodes, ER+/PR+, HER2- Surgery 11/22/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Radiation Therapy 5/19/2014 Breast Hormonal Therapy 5/23/2014 Femara (letrozole) Surgery 12/9/2014 Reconstruction (right)
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Nov 26, 2017 02:51PM hope70 wrote:

Hello Ladies! I have been on Aromasin( Exemestane) for over 2 years. I had my ovaries out 2 yrs ago . So, in total, I am in menopause for over 2 years now. Had no issues with vaginal dryness up until now. I did loose my libido ever since I went through all the treatments, surgeries...but I never had painful intercourse . My OBGYn confirmed vaginal atrophy and joked that he was expecting my call ( he was surprised that I did not have any dryness last year at my annual exam). I am puzzled. Why now and not a year or two ago.I am in tremendous discomfort. Burning and stinging down there ( day and night) making me miserable and depressed. Looking for suggestions, sisters. (OBGYN suggested vaginal estrogen cream, but I am afraid to use it. ALso, he gave me Metrogel (he noticed some "bacterial overgrowth") and during the use of Metrogel and for a few days after....I had no burning and was so happy. Now the burning is back....

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Nov 26, 2017 04:24PM Trvler wrote:

Hope: Did you stop intercourse for any time period?

Allison Dx 1/16/2015, ILC, Left, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- Dx 2/26/2015, ILC, Left, 4cm, Stage IIIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- Chemotherapy 3/24/2015 AC + T (Taxol) Surgery 9/1/2015 Mastectomy; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Radiation Therapy 10/15/2015 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/1/2016
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Nov 28, 2017 07:27PM - edited Dec 10, 2017 07:50AM by Logang

I still swear by using coconut oil a few times a day to prevent vaginal dryness. I have been using it twice daily for over a year now and never have any discomfort. We have even skipped additional lube a few times.

Married mother of 2 boys (16 & 20). Diagnosed at age 39, Oncotype- 57, extensive family history, no genetic mutations found. Dx 1/8/2016, IDC, Right, 3cm, Stage IIA, Grade 3, 0/31 nodes, ER+/PR-, HER2- Surgery 1/25/2016 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Right Chemotherapy 3/11/2016 AC + T (Taxol) Hormonal Therapy 7/26/2016 Zoladex (goserelin) Hormonal Therapy 9/19/2016 Aromasin (exemestane) Surgery 11/3/2016 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 4/9/2017 Reconstruction (left): Nipple tattoo, Silicone implant; Reconstruction (right): Nipple tattoo, Silicone implant Surgery 9/6/2017 Prophylactic ovary removal
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Nov 30, 2017 07:40PM - edited Dec 1, 2017 09:44AM by bc101

Hi ladies,

I was so happy to find this thread. I started taking DHEA suppositories a few weeks ago. Anyone else here taking it? Not sure, but I believe it's the same as Intrarosa. Sounds like a wonder drug and I'm feeling cautiously optimistic, but studies and information on this new drug is lacking, which is so frustrating. The only thing I've read is that it doesn't increase estrogen levels systemically. But then again, it hasn't been studied in women with breast cancer.


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Dec 1, 2017 07:02PM Kali44 wrote:

Hello,

I asked my team about using DHEA and because I am er+ I was told no 😕 Good luck! Maybe someone else has tried it ☺

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Dec 2, 2017 03:21PM ckfelix79 wrote:

Hi all my low libido ladies, I'm 38 and sex has not been great since I started all these treatments. I used to be a microwave and now am a crockpot, it takes a lot to warm me up and I still have little desire to climax. I use coconut oil for lube so am oK in that area but not OK with initiating or having the desire. I mean magic Mike could be in front if me and I'd flatline, its like dead down there! I'm currently on aromasin and lupron shot. I appreciate any and all behind bedroom door advice!!


Dx 2/28/2016, IDC, Right, 4cm, Grade 2, ER+/PR+, HER2-
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Dec 3, 2017 04:18PM corky60 wrote:

Hope 70, I use one part aloe vera gel and one part prescription-strength Lidocaine ointment 5%. I mix these together and apply internally 2-3 times per day with clean fingers. This was recommended by my PCP and helps with the burning.

I also use Estriol suppositories. These were prescribed by my naturopath and are made in a compounding pharmacy. This is to combat urovaginal atrophy. I was getting so many UTIs due to the atrophy. Now so far I've only had one this year.

Dx 3/25/2013, IDC, Right, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/25/2013 Lumpectomy: Right; Lymph node removal: Right Radiation Therapy 5/28/2013 Breast
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Dec 4, 2017 05:55PM runor wrote:

I saw a new doctor today after deciding that my other doctor was seriously falling down on the job. Has never once asked me how I'm doing, how is the LE, are you in pain, do you have full arm mobility, how are you doing with the tamoxifen - nothing!

This new doc had to give me the results of my mamm - the new lump in my good boob is just a cyst, but the bad boob looks like it might have more cancer. Or scars. We don't know if it's cancer or scars, so we'll wait and see - ugh.

When I told him that tamoxic was giving me night sweats, hot flahes, creaky joints and stopped my periods he said "How is your sex life?" And I thought, wow, the ladies at bc.org would appreciate that question! I said it was okay. He asked if I was having problems with lubrication and I said not so far, although I can't use soap anymore or I pay for it. He said, if things get miserable, come see him, no sense suffering in silence.

I think I like this doc much, much better.

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 5, 2017 01:17PM Trvler wrote:

Runor: I am so happy you got a new doctor. I am a firm believing in firing doctors who don't do a good job. Someday when I have an hour, I will tell you about my nightmare of an oncologist. ;)

Allison Dx 1/16/2015, ILC, Left, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- Dx 2/26/2015, ILC, Left, 4cm, Stage IIIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- Chemotherapy 3/24/2015 AC + T (Taxol) Surgery 9/1/2015 Mastectomy; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Radiation Therapy 10/15/2015 Whole-breast: Breast, Lymph nodes Hormonal Therapy 1/1/2016

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