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Topic: Cancer again after double Mastectomy?

Forum: Second or Third Breast Cancer — For those confronting a new primary diagnosis or undergoing treatment.

Posted on: Apr 11, 2019 02:38PM - edited Apr 11, 2019 02:50PM by AngO

AngO wrote:

Hello, I'm new here. I am 47 years old and have history of breast cancer. My first diagnosis was in 2005, I had a lumpectomy and radiation and was put on Tamoxifen.. After 5 years I stopped the Tamoxifen and was told that the chances of me getting cancer again was laughable. Fast forward to December 2013 and I find out I have a recurrence. January of 2014 I had a double Mastectomy and reconstruction with silicone implants and fat grafting. They biopsied the lymph nodes but said they were clear. Then they put me into menopause with a full hysterectomy and started me on Femara. I am just about finished with my Femara and went in for my 5 year MRI, which my surgeon had wanted ordered every 5 years. Then they call me wanted an ultrasound on my axillary lymph nodes, my cancer has been on the right side. After the ultrasound I was told I need a biopsy on the lymph node that is prominent. Now I have to wait 2 weeks for my biopsy. I'm so concerned and frustrated that I have to wait so long. I thought I was done with this. My husband and I were just getting ready to adopt two orphan brothers too. My heart is breaking that we might not be able to adopt now. On top of all of this, a month ago I hurt my back and had a MRI for that too because PT wasn't working. Turns out I have two ruptured discs and spinal stenosis. I see a surgeon next week about that. I am so overwhelmed. If any one out there is a prayer warrior please pray for me! I wont know until the end of the month what is going on with my lymph node. Thank you for any encouragment and advice.

Dx 11/1/2005, DCIS, Right, <1cm, Stage 0, ER+/PR+, HER2+ Dx 1/2014, IDC, Right, 1cm, Stage IB, ER+/PR+, HER2+ Surgery Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Apr 12, 2019 10:08PM mom2e wrote:

Hi, Ang. Our stories are so similar. I’m waiting for a biopsy too - on the OTHER side. Plus one of my blood tests came back weird - high lymphocytes. Investigating that, too. Im just so tired of all of this. Also had thyroid cancer with mets to lymph nodes in 2010 at the same time as my second breast cancer.

Sending hugs and understanding,

Jodi

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Apr 14, 2019 12:07AM vlnrph wrote:

Dear Ang, for being diagnosed so young, has anyone suggested genetic counseling?

Ruptured discs are not good but at least it’s not metastatic disease affecting your spine! Congratulations on staying with Femara the whole five years. I couldn’t tolerate the side effects.

I hope this lymph node business doesn’t interrupt or delay your adoption plans. Those boys need a forever family. Perhaps there is a wait list you can get on in case of a cancellation...

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Apr 14, 2019 04:21AM AngO wrote:

Thank you for the encouragement mom2e and vlnrph. I will ask about the genetic counseling. I have 2 daughters that are 18 and 20, they probably should start screening soon?

I did ask to be on a cancellation list so we'll see. I am thankful the MRI on my spine does not show metastasis. I'm worrying that we won't be able to give the boys a forever home with all this happening, but maybe there is someone else out there for them.

Dx 11/1/2005, DCIS, Right, <1cm, Stage 0, ER+/PR+, HER2+ Dx 1/2014, IDC, Right, 1cm, Stage IB, ER+/PR+, HER2+ Surgery Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Apr 14, 2019 03:09PM vlnrph wrote:

One rule of thumb for screening in a younger generation is to start a decade prior to the age of diagnosis in the parent/sibling, etc. So, your daughters can probably wait a few years before obtaining imaging. The problem is breast density which makes detection by mammogram more difficult pre-menopause. Of course, they can be doing self-exams every month and getting checked by their primary care provider.

What could be most informative would be to find out whether there is a mutation in the mix. If there is, insurance may pay for better scans such as MRI. This where a genetic counselor's expertise comes into play. They can take an accurate family history, decide which testing company to use (because not all of them look at the same genes) and help you cope with whatever the results might be.

Meanwhile, you can focus on the back problem. I had a series of steroid injections for my herniated disc in 2008. Hopefully you won't require surgery. The work that interventional radiologists can do these days is amazing.

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Apr 15, 2019 09:16AM KBeee wrote:

I'm sorry you are dealing with so much. Do not hesitate to call their scheduler and see if you can get in sooner. Those places get cancellations all the time, and just fill them with the next person that calls. Hoping the biopsy is benign.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Apr 18, 2019 04:48PM romashka wrote:

AngO,

You are going through so many things. I don't know you, but my heart hears you.

Lots of hugs.

PALB2 Dx 8/22/2017, IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 10/10/2017 Mastectomy: Left, Right
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Apr 18, 2019 08:23PM AngO wrote:

Thank you for the hugs and support.

Dx 11/1/2005, DCIS, Right, <1cm, Stage 0, ER+/PR+, HER2+ Dx 1/2014, IDC, Right, 1cm, Stage IB, ER+/PR+, HER2+ Surgery Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Apr 18, 2019 09:46PM Jes_2007 wrote:

AngO, I'm so very sorry you are going through all this! You will definitely be in my daily prayers. Please do not give up on your dreams!!!

Please forgive me for asking these questions, but it looks like you would know the answers based on your experience. I'm returning to this blog tonight with my 3rd new Breast Cancer bump in the road. This time the doctor wants me to make a decision about having a double mastectomy. Given the exact same circumstances (past history & genetic testing results), she said she would have it done. I'm SO CLUELESS!!!! You mentioned a 5 year followup with an MRI. Do they do more MRIs in lesser time intervals right after surgery to make sure they got it all? How often? My concern since I was given this decision to make has been about not finding reoccurrences if the pop up in the breast wall. A partial mastectomy on one breast would be all they would need to do currently to take care of my immediate problem, but she says I have a 72% chance of having cancer again. Even though I'd be really more lopsided than I already am, having the least amount done might prevent other problems. The cancer they just found was not found on the mammogram-evidently too far back. I have a week to make this decision. Thank you!!!!

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Apr 19, 2019 11:02AM AngO wrote:

Jes_2007 thank you for encouraging me and praying for me. I will pray for you too!

My husband said my Dr told me every three years for MRI. I thought it was five. Anyway, I'm glad I finally did it now that there might be something there. I don't regret getting my bilateral mastectomy, but I sometimes wonder if I should not have had implants, just because of wondering about my chest wall having it and not knowing. I'm so sorry you are struggling with this. If you do decide to do it, make sure they do NOT give you the textured implants, they have a higher risk of causing cancer.

My personal opinion was and still is to do whatever is needed to reduce my risk of reaccurance. That is why I went ahead with my mastectomy. If I show cancer again, I will probably take out the implants even though it would be difficult for my self image. I'm only 47 and I sometimes get so frustrated and depressed about my fight with cancer, but I have to keep going and trust God is with me and will help me.

I don't know if this helps much but I'm happy to talk to you more if you have more thoughts and questions.

Take care.

AngO

Dx 11/1/2005, DCIS, Right, <1cm, Stage 0, ER+/PR+, HER2+ Dx 1/2014, IDC, Right, 1cm, Stage IB, ER+/PR+, HER2+ Surgery Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Apr 19, 2019 02:12PM Jes_2007 wrote:

Thank you!!! That was very helpful! I'm my 87 yr. old Mom's caregiver. She takes care of her basic needs, but I have all the other responsibilities because she is on a walker due to fracture, blood clots, 3 cancers with sepsis & pneumonia most since last August. How long was it before you were able to cook and do laundry after the surgery? I plan to private pay a CNA to come in a couple hours 3 times a week so Mom can safely shower. I do plan to freeze meals that can be microwaved, as well as have all laundry done and everything I need at the house during the healing process. The most I can depend on is my sister to drop things off I may find I need, as she works & has severely disabled husband. I have friends who would help some, but I don't want to long term burden them. Is there anything else you found helpful? Thank you so much!!!!

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Apr 19, 2019 02:43PM AngO wrote:

Wow, you have your hands full. It took me about a month, but I had trouble with infection in the breast that I had radiation on in the first time of cancer. If I remember right, I had the drains in about 6 weeks. If I wouldn't have infection I probably would have been at least cooking after 2 weeks, maybe small loads of laundry too. My family, kids and husband, we're very helpful. Some friends brought meals. Good idea to freeze meals ahead of time and have laundry caught up. Get plenty of rest that first week. Let people help you when they ask, they feel good helping and you need it too. Try not to feel like a burden, you're not. When you have the drains in you have to take sponge baths. It was kind of difficult on my own so my husband helped until I felt better,. Is there someone who can help you for about a week? The drains stay in untill your body slows down or stops filling them. Could be a month. Hope this helps. Let me know if you have more questions.

Dx 11/1/2005, DCIS, Right, <1cm, Stage 0, ER+/PR+, HER2+ Dx 1/2014, IDC, Right, 1cm, Stage IB, ER+/PR+, HER2+ Surgery Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Apr 19, 2019 03:57PM AngO wrote:

Jes_2007,

Check out this website: endurance.org

They have encouragement for people going through cancer. Sign up for their resources too, I just got a box of stuff from them, free.

I can't wait to dive into these resources.


I hope you find comfort with this too.

AngO

Dx 11/1/2005, DCIS, Right, <1cm, Stage 0, ER+/PR+, HER2+ Dx 1/2014, IDC, Right, 1cm, Stage IB, ER+/PR+, HER2+ Surgery Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Apr 19, 2019 06:00PM Georgia1 wrote:

Jes, just checking in to see how you are doing and if you've decided to have the double masectomy. Sounds like you have a genetic marker that makes a recurrence more likely? Personally I only needed the partial masectomy (lumpectomy), so I can't answer your questions. I just wanted to offer support and best wishes.

AngO I am sending good thoughts your way as well. Let us know what happens and how we can help.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 10/9/2017 Lumpectomy; Lymph node removal: Right, Sentinel Dx 10/10/2017, LCIS, Right, 0/1 nodes Radiation Therapy 11/26/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 19, 2019 06:34PM Jes_2007 wrote:

Thank you all! You are all so wonderful!!! I think I'm ok. I feel so driven to stay focused and prepare, but I also feel really detached if that makes any sense. I know I'll get through this! All the information is very helpful, but I'm still considering everything. I know once decisions are made, I know the treatment travels like a steamroller once it gets started! I'll check out ALL the resources suggested. I wish everyone of you the best and offer my prayers too!!! Thank you!

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Apr 27, 2019 04:27PM Celebris466 wrote:

How are you doing

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Apr 27, 2019 05:30PM Margun wrote:

AngO- I hope and pray that your biopsy comes clear. I read for other people had go though fear if having recurrence but then was false alarm.

In your treatment in 2005 while dx her2 positivé you did not mention chimio. It was not done? Normally is done for Her2positive to prevent recurrence. Stay strong

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Apr 27, 2019 05:42PM Margun wrote:

georgia. My doctor is suggesting lumpectomy but a lot of people are opting for mastectomy. I am tormented. What made your decision to go with lumpectomy

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Apr 27, 2019 07:23PM AngO wrote:

Im hanging in there. Trying to heal from back surgery. It's very tender. Waiting for biopsy results on Tuesday.

Thank you

Dx 11/1/2005, DCIS, Right, <1cm, Stage 0, ER+/PR+, HER2+ Dx 1/2014, IDC, Right, 1cm, Stage IB, ER+/PR+, HER2+ Surgery Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Apr 27, 2019 07:25PM AngO wrote:

My oncologist said I didn't need chemo on my first round because it was early stage. I now wonder if that was the right decision.

Dx 11/1/2005, DCIS, Right, <1cm, Stage 0, ER+/PR+, HER2+ Dx 1/2014, IDC, Right, 1cm, Stage IB, ER+/PR+, HER2+ Surgery Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Apr 27, 2019 07:52PM - edited Apr 27, 2019 07:53PM by Astrid

yes I think back then, if no spread to nodes then no chemo Ang. So sorry to hear of your recurrence.

Even if the node is pos. You can do this. So they will take some nodes out...and you may finally do chemo. I guess no rads in 2013/14 because same side? Hmmm. No chemo then either but pre cautionary surgeries. Interesting.

If you read my history below you'll see plenty of reason for optimism. Almost same timeline too...yes Different treatments but hey...I am 18 years out..had 2 recurrences. Lots of ops and treatment. Going great! You will be ok. Really! HeartLet's hope for happy news on Tuesday. Xx

2002:IDC, double mast & double axilla clearance, chemo. 2003: recurrence left mast.IDC. rads. 2011:reconstruction 2012: recurrence right mast side ILC. rads. Left arm LE since 2003. Right arm LE dx 2016 LE left chest wall & mast.site dx late 2016.
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Apr 27, 2019 09:54PM Meow13 wrote:

AngO, what about herceptin?

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Apr 27, 2019 10:11PM AMLMom wrote:

AngO - So sorry you are dealing with this again! I will say a prayer for earlier results and positive results!

Dx 11/2018, DCIS/IDC, Left, 6cm+, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 2/13/2019 Lumpectomy: Left; Lymph node removal: Sentinel; Reconstruction (left) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Apr 27, 2019 11:13PM rrshannon wrote:

AngO so sorry you are having to wait so long for the results. I can't believe that they don't have them yet. I hope your back surgery heals quickly.

BRCA Negative. Dx 7/2/2003, ILC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 7/11/2003 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 7/23/2003 AC Radiation Therapy 10/30/2003 Dx 12/11/2018, IDC, Right, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2- (FISH) Chemotherapy 1/17/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/15/2019 Lymph node removal: Right; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right) Hormonal Therapy 5/10/2019 Femara (letrozole)
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May 1, 2019 06:07PM Astrid wrote:

any news and updates Ang?

2002:IDC, double mast & double axilla clearance, chemo. 2003: recurrence left mast.IDC. rads. 2011:reconstruction 2012: recurrence right mast side ILC. rads. Left arm LE since 2003. Right arm LE dx 2016 LE left chest wall & mast.site dx late 2016.
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May 1, 2019 08:56PM AngO wrote:

Sorry for the delay on my update here. I'm so happy to tell you all that it was not cancer after all!!! I'm so happy! The lymph node was enlarged and it tested negative. So they do want to monitor it and just keep an eye on it. Thank you so much for encouraging words and prayers.

Dx 11/1/2005, DCIS, Right, <1cm, Stage 0, ER+/PR+, HER2+ Dx 1/2014, IDC, Right, 1cm, Stage IB, ER+/PR+, HER2+ Surgery Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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May 2, 2019 03:37AM Meow13 wrote:

Good news!

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May 2, 2019 04:52PM Palesa2018 wrote:

That is great news! Take encouragement from that.

Dx 6/7/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 6/12/2018 Lymph node removal: Sentinel Surgery 7/9/2018 Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 8/9/2018 Hormonal Therapy 9/12/2018 Zoladex (goserelin) Radiation Therapy 9/16/2018 Whole-breast: Breast, Chest wall Hormonal Therapy 11/4/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 3, 2019 07:33PM Astrid wrote:

yes. Wonderful.Smile

2002:IDC, double mast & double axilla clearance, chemo. 2003: recurrence left mast.IDC. rads. 2011:reconstruction 2012: recurrence right mast side ILC. rads. Left arm LE since 2003. Right arm LE dx 2016 LE left chest wall & mast.site dx late 2016.
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May 6, 2019 01:10PM KBeee wrote:

Great news!

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)

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