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Topic: August 2019 surgery support group

Forum: Surgery - Before, During, and After — Surgical options and helpful tips for recovery and side effects.

Posted on: Jul 6, 2019 07:10PM - edited Jul 29, 2019 06:59PM by ucfknights

ucfknights wrote:

mom will be getting surgery sometime in August. Please drop by if you are scheduled in August or already had surgery and have any tips :)


Edited to add: my mom is getting a BMX on Aug 19. Final chemo is July 23rd


Here’s the list:

August 1 - LMS458412 - bilateral mastectomy w/o reconstruction

August 2 - sagelady - L mastectomy with sentinel node bx

August 5 - tmh0921 - bilateral mastectomy, latissimus dorsi flap reconstruction on my left breast, and tissue expander placement bilaterally

August 5 - Peggy814 - Bilateral Mastectomy

August 6 - okjoan - lumpectomy and axillary node biopsy

August 8 - laurencl - Right mastectomy with tissue expander placement

August 8 - dawns1962 - nipple sparring (hopefully) mastectomy of my right breast and expanders, left breast lifted

August 13 - arizonaboundgal - bilateral mastectomy with no reconstruction

August 19 - ucfknights' mom - bilateral mastectomy

August 19- notdefined - unilateral mastectomy with diep reconstruction

August ? - Nadia_D - right breast mastectomy with tissue expander placement

August ? - Margun - bilateral Goldilocks

Dx 1/23/2019, DCIS/IDC, Left, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- Surgery 2/4/2019 Lumpectomy: Left; Lymph node removal Dx 2/28/2019, IDC, Left, <1cm, Stage IA, Grade 2, ER+/PR-, HER2- Chemotherapy 3/11/2019 AC + T (Taxol) Surgery 8/19/2019 Prophylactic mastectomy: Right
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Sep 5, 2019 12:14AM Lucy55 wrote:

Tracy ...I had lymph nodes removed the first time . The surgeon told me he won't be trying to take nodes this time , but sometimes they are taken just because of where they are .

Dx 8/27/2014, IDC, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Hormonal Therapy 9/14/2014
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Sep 5, 2019 09:58AM Laurencl wrote:

ACChaos,,

I have one right expander and I feel the same way. I know it’s there and it I don’t like it. The first fill at the office was okay, but I think they filled it more this time and it sort of hurts. I also feel a pulling under my arm and some arm discomfort. Had a complete (“I can’t do this “) melt down last night, but it passed, had a glass of wine, and sleep and I felt better. Trying not to over do it today...and that’s hard

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Sep 5, 2019 05:42PM ACchaos wrote:

Laurencl, I’m trying to keep the temporary part in mind. I’m realizing that most of my discomfort is the expanders at this point, for which I was not really prepared. Must have been yet another conversation I don’t remember. Slouching was unusually uncomfortable and then I realized it’s the plates. Grr. It’s only a few months. I haven’t had any fills other than that the initial one with air. I’m kind of dreading the transition to saline

Dx 6/2019, IDC, Left, 1cm, Stage IB, Grade 2, 0/2 nodes, ER-/PR-, HER2- Surgery 8/23/2019 Mastectomy: Left, Right
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Sep 5, 2019 06:56PM Tmh0921 wrote:

ACchaos

I’ve heard the actual saline implants are way more comfortable. Most people find the TEs uncomfortable :

First Dx at 27 years old in 1999, 2nd Dx 2018, 3rd Dx 2019... Current Oncotype: 26 Dx 12/7/1999, IDC, Left, 1cm, Stage IB, Grade 2, 0/14 nodes, ER+/PR+ Surgery 12/22/1999 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 1/30/2000 Whole-breast: Breast, Lymph nodes Hormonal Therapy 2/1/2000 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 8/24/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/4/2018 Lumpectomy: Left Dx 9/7/2018, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 5/31/2019, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 8/5/2019 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/4/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 8, 2019 02:24PM Laurencl wrote:

Has PT been suggested to anyone? Have you gone?

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Sep 8, 2019 06:12PM - edited Sep 8, 2019 06:12PM by Tmh0921

I didn't have PT suggested. Did you have chording or Lymphedema?

Tracy

First Dx at 27 years old in 1999, 2nd Dx 2018, 3rd Dx 2019... Current Oncotype: 26 Dx 12/7/1999, IDC, Left, 1cm, Stage IB, Grade 2, 0/14 nodes, ER+/PR+ Surgery 12/22/1999 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 1/30/2000 Whole-breast: Breast, Lymph nodes Hormonal Therapy 2/1/2000 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 8/24/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/4/2018 Lumpectomy: Left Dx 9/7/2018, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 5/31/2019, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 8/5/2019 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/4/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 8, 2019 07:03PM Laurencl wrote:

TMH

Nope. Have not had any of that. The RO said it would help with range of motion...just seems like something else to do

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Sep 8, 2019 07:06PM - edited Sep 8, 2019 07:06PM by Tmh0921

I didn't have PT with either of my surgeries and my range of motion is fine, I just made an effort to stretch my arms and muscles each day.

Tracy

First Dx at 27 years old in 1999, 2nd Dx 2018, 3rd Dx 2019... Current Oncotype: 26 Dx 12/7/1999, IDC, Left, 1cm, Stage IB, Grade 2, 0/14 nodes, ER+/PR+ Surgery 12/22/1999 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 1/30/2000 Whole-breast: Breast, Lymph nodes Hormonal Therapy 2/1/2000 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 8/24/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/4/2018 Lumpectomy: Left Dx 9/7/2018, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 5/31/2019, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 8/5/2019 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/4/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 9, 2019 08:02AM HopeWins wrote:

I had a PT meeting prior to surgery and have a multi-week plan for range of motion exercises to do at home. I find they help a lot. At 2w post surgery I was allowed to start lifting my arms above shoulder height and I think the exercises really helped with this transition.

If you Google "mastectomy range of motion" there are lots of online resources and also YouTube videos.

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Sep 9, 2019 11:16AM LMS458412 wrote:

My surgeon never gave me any exercises to do. Now I have mild cording on one side and my range of motion is horrible. I finally have a PT appointment next week to start working on it. The therapist is also a lymphedema specialist, so I will learn prevention techniques.

Dx 7/8/2019, IDC, Right, 2cm, Grade 3, 1/7 nodes, ER+/PR+, HER2- (FISH) Surgery 8/1/2019 Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 9/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 11, 2019 09:53AM Margun wrote:

there are anyone Isnot having radiation and why? What is the pourcentage of the recurrence rate decrease that makes radiation worthy? Thanks.

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Sep 11, 2019 10:41AM Tmh0921 wrote:

I had radiation with my first round in 1999. For what it’s worth, my MO believes my current Dx is a new cancer and NOT a recurrence. So I had 20 years with no recurrence.

Tracy

First Dx at 27 years old in 1999, 2nd Dx 2018, 3rd Dx 2019... Current Oncotype: 26 Dx 12/7/1999, IDC, Left, 1cm, Stage IB, Grade 2, 0/14 nodes, ER+/PR+ Surgery 12/22/1999 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 1/30/2000 Whole-breast: Breast, Lymph nodes Hormonal Therapy 2/1/2000 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 8/24/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/4/2018 Lumpectomy: Left Dx 9/7/2018, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 5/31/2019, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 8/5/2019 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/4/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 11, 2019 11:07AM Margun wrote:

hi Tmh- radiation and all treatments are done to reduce ris I but they are proposed while they are more important than Se. If a radiation reduces the risk by around 4 percent is the radiation worth it conciderung that rads also have risks. That’s why I was asking what is the percentage of recurrence decrease that makes rads worthy. My friend with no agressive tumour is offered the chance do it or not do it because docs did nor see much difference.

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Sep 11, 2019 11:21AM Tmh0921 wrote:

When I did it in 99, all they could offer with regards to studies was that "lumpectomy with radiation" was equal to Mastectomy as relates to effectiveness. I believe there are far more studies on risk v. benefit out now. I had very few SEs from radiation even 20 years ago, and it's much more targeted now. I wonder about ladies who see a lot of bad SEs and whether or not the field of radiation and dose is appropriate.

The scary thing about Radiation, and even chemo, is that both are carcinogenic and can cause secondary cancers. I remember signing a form at the initiation of radiation acknowledging there was a small risk of developing radiation induced lymphoma. With chemo, there is a risk of Leukemia.... it's all maddening.

Tracy

First Dx at 27 years old in 1999, 2nd Dx 2018, 3rd Dx 2019... Current Oncotype: 26 Dx 12/7/1999, IDC, Left, 1cm, Stage IB, Grade 2, 0/14 nodes, ER+/PR+ Surgery 12/22/1999 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 1/30/2000 Whole-breast: Breast, Lymph nodes Hormonal Therapy 2/1/2000 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 8/24/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/4/2018 Lumpectomy: Left Dx 9/7/2018, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 5/31/2019, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 8/5/2019 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/4/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 11, 2019 12:40PM DawnS1962 wrote:

Margun, I've been battling whether to do radiation also. I know the decision is ultimately mine but I'll talk to MO on the 25th. I'm looking at 6 1/2 weeks. That's a lot.

Dx 1/25/2019, IDC, Right, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 2/28/2019 AC Chemotherapy 3/1/2019 AC + T (Taxol) Targeted Therapy 4/25/2019 Herceptin (trastuzumab) Surgery 8/8/2019 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 8/16/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+, HER2+ Targeted Therapy Perjeta (pertuzumab)
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Sep 11, 2019 12:44PM HopeWins wrote:

hi Margun - not sure if this helps, but this is my situation. I had a DCIS dx from an excisional biopsy and my margins were around 3mm on all sides except one, which was <1mm. My first BS who did the procedure proposed doing another excision for clean margins and I was scheduled to see an RO. I'm 47, family history of BC, no (known) genetic markers, very dense breasts. I'm risk adverse. I read everything I could get my hands on. I didn't see a way out of radiation if I decided to keep my breast and have less than 25-30% chance of recurrence, which was too high for me. I discussed with MO and he agreed. So, I cancelled my RO appt. I decided that if my choice was between rads + HT + MRI/close monitoring or bmx, I preferred bmx.

My bmx found more DCIS, but I had clean margins and SNB was negative, so I will not be having rads.

Fyi - my new BS mentioned a test similar to the oncotype test that is an indicator for the benefit of rads. I don't remember the name of it but happy to look in my binder if you're interested.

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Sep 11, 2019 01:57PM LMS458412 wrote:

I chose to have a BMX with no reconstruction because I didn't want radiation, but my MO is suggesting it. I agreed to meet with the RO once my chemo is done, but I'm uncertain. My cancer is 100% ER positive, so I was hoping hormonal therapy would be enough after chemo. I need more info before I make a final decision.

Dx 7/8/2019, IDC, Right, 2cm, Grade 3, 1/7 nodes, ER+/PR+, HER2- (FISH) Surgery 8/1/2019 Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 9/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 11, 2019 02:04PM - edited Sep 11, 2019 02:05PM by Margun

LMS-your Mo is suggesting rads because of node involvement? But if chemo gets rid of all cells perhaps he will changehis mind.

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Sep 11, 2019 02:10PM Laurencl wrote:

I was hoping to avoid radiation, particularly when my surgeon said that my pathology report was good and she was not sure I needed it. All my docs are with the same hospital system and I was told that the cases are discussed. The MO and RO recommended radiation since there was one lymph node. I do trust my docs and have decided to proceed, but disappointed for sure. Looks like 6 weeks. Just want to get it done

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Sep 11, 2019 02:13PM LMS458412 wrote:

Yes, I had one node involved, thus radiation is suggested. I still need to be convinced.

Dx 7/8/2019, IDC, Right, 2cm, Grade 3, 1/7 nodes, ER+/PR+, HER2- (FISH) Surgery 8/1/2019 Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 9/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 11, 2019 02:23PM Belinda977 wrote:

I had lumpectomy, radiation and tamoxifen with my first IDC in 2012. Only long term side effect was that I had very little sweat glands on that side and some mild discoloration. This time, I had DCIS in my other breast and elected DMX and won't need radiation.

Belinda Dx 4/23/2012, IDC, 1cm, Stage IA, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 5/17/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 7/30/2012 Breast Hormonal Therapy 9/18/2012 Dx 7/25/2019, DCIS, Right, Stage 0, Grade 2, ER+ Dx 8/29/2019, DCIS, Right, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 8/29/2019 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right)
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Sep 11, 2019 02:26PM Belinda977 wrote:

Had my appointment to go over my pathology results. I had an additional 3mm of DCIS that was unseen on the mammogram and found during the pathology exam. TIssue was removed and it must have been really close to the nipple as I have had a small amount of bleeding from there. The surgeon's are watching it.

Two drains left, one should be removed tomorrow. The other is right at the 30ml mark.

I will be at the two week mark tomorrow and feel better everyday. Initially, these implants seemed so foreign/strange feeling. I am starting to get used to them.

Belinda Dx 4/23/2012, IDC, 1cm, Stage IA, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 5/17/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 7/30/2012 Breast Hormonal Therapy 9/18/2012 Dx 7/25/2019, DCIS, Right, Stage 0, Grade 2, ER+ Dx 8/29/2019, DCIS, Right, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 8/29/2019 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right)
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Sep 11, 2019 02:31PM - edited Sep 11, 2019 02:32PM by Margun

Belinda- in some point I have to take hormone pills. I do not know if it will be tamoxifen or something else. What was your experience with tamoxifen? I read a lot onnegative experiences with hormone pills and when one must take them for 5-10 years it is worrisome how it will affect life.

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Sep 11, 2019 02:37PM Belinda977 wrote:

Margun -- I did fine on the Tamoxifen. Initially, I was very moody but subsided with time. My cancers were 99 and 97% ER+ so for me I never considered not taking it. However, I got the DCIS on Tamoxifen which has them concerned. I am technically still pre-menopausal so considered ovary removal so that that I can take an Aromotise Inhibitor.

Belinda Dx 4/23/2012, IDC, 1cm, Stage IA, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 5/17/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 7/30/2012 Breast Hormonal Therapy 9/18/2012 Dx 7/25/2019, DCIS, Right, Stage 0, Grade 2, ER+ Dx 8/29/2019, DCIS, Right, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 8/29/2019 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right)
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Sep 11, 2019 03:35PM Margun wrote:

I think the type of the hormone pill and how long you have to take it depends on the age of the persons, if she is premenopausal or postmenopausal as well as how much hormon positive she is. I do not know how much positivities am. I am in fifties postmenopausal. I hope my doc will recommend 5 years and I am curious what type of pill is commonly suggested to postmenopausal women

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Sep 12, 2019 12:45PM prehistoricmom wrote:

Margun yeah me too, I wonder what they will want me to take. I think the aromatase inhibitors are for post menopause? Breastcancer.org has a good article "Hormonal Therapy Side Effects" with a comparison chart. I really hope they don't want me to take Femara b/c it can raise your cholesterol & I'm already on Crestor for that!!

"You just have to take it one 'are you f*cking kidding me' at a time" amanda x. coleman Dx 7/23/2019, IDC, Left, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 8/15/2019 Lumpectomy: Left Radiation Therapy Breast
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Sep 13, 2019 09:50AM - edited Sep 13, 2019 09:50AM by LMS458412

This Post was deleted by LMS458412.
Dx 7/8/2019, IDC, Right, 2cm, Grade 3, 1/7 nodes, ER+/PR+, HER2- (FISH) Surgery 8/1/2019 Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 9/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 13, 2019 09:51AM LMS458412 wrote:

I'm thinking of all you ladies today and hope that you are healing well!!!!

I start physical therapy next week to get my range of motion tip top. I made it through chemo #1...only 3 more to go!

I'm praying for all of you...for speedy healing and for a fantastic new normal once we all get through this.

Dx 7/8/2019, IDC, Right, 2cm, Grade 3, 1/7 nodes, ER+/PR+, HER2- (FISH) Surgery 8/1/2019 Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 9/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 14, 2019 07:39PM Yogatyme wrote:

Add me to the list, too. I had BMX on 8/13. Stage 1a, grade 2, no lymph involvement (0/5) ER+PR+HER2-. The surgery went well and decided on BMX bc I have BRCA1 mutation. Recovery is going well but it’s been difficult allowing myself to be so dependent. However, a friend who has had breast cancer told me that her arm lymphedema is from trying to do too much too soon after surgery. Well, that scared me straight!! 😂Like others, I cleaned my house and organized like crazy before surgery and glad I did. Coming home to a clean house was comforting. I don’t think the acuteness of the pain has been the issue for me as much as the length of recovery. I have to say, I am a tough gal but this has made me feel like I’ve been in the ring with Ali! Anxious for the next week to pass so I can finally take the compression bra off!

Yogatyme Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/12/2019 Mastectomy: Left, Right
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Sep 15, 2019 02:37PM LMS458412 wrote:

Welcome Yogatyme! Wishing you quick healing.

Dx 7/8/2019, IDC, Right, 2cm, Grade 3, 1/7 nodes, ER+/PR+, HER2- (FISH) Surgery 8/1/2019 Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 9/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)

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