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Topic: Is node removal necessary for HER2+, ER/PR-?

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Mar 22, 2021 07:52PM

stephincanada wrote:

Hi all,

I am asking for a friend who has HER2+, hormone receptor negative B.C. She had surgery first and then began chemo (she was not given the option of doing chemo first---aarrgh). Her surgeon did not get clear margins and 4/5 nodes were positive. He wants to operate again and remove the remaining lymph nodes. Her medical oncologist thinks this is unnecessary. My friend is struggling with the decision because she received two conflicting opinions. Thought I'd ask this wonderful and knowledgable community if they have any advice to give or what further questions she should ask her doctors.

Thank you and I hope everyone is faring OK (if you are going through treatment), or living life large (if you are done).



Dx 5/26/2016, IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 6/8/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 7/7/2016 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Targeted Therapy 9/6/2016 Herceptin (trastuzumab) Targeted Therapy 9/8/2016 Perjeta (pertuzumab) Radiation Therapy 11/30/2016 Whole-breast: Breast, Lymph nodes
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Mar 22, 2021 08:06PM ElaineTherese wrote:

Hi!

Is your friend planning to get radiation? Increasingly, radiation is being recommended instead of ALND. ALND is more associated with lymphadema than sentinel lymph node removal. So, doctors are recommending it less. I had ALND myself and had all 20 of my Levels 1 and 2 nodes removed. I did not get lymphadema but that's not true in every case.

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/22/2014 AC Targeted Therapy 9/16/2014 Perjeta (pertuzumab) Targeted Therapy 9/16/2014 Herceptin (trastuzumab) Chemotherapy 9/16/2014 Taxol (paclitaxel) Surgery 1/11/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/24/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/8/2015 Breast, Lymph nodes
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Mar 22, 2021 08:09PM stephincanada wrote:

Hi Elaine,

Thanks for your response. Yes, she will receive radiation, including 5 boosters. Is ALND as effective as a complete node removal? Other than lymphedema, are there other adverse effects to complete lymph node removal?

My worry is that the surgeon is the one who knows what he did. The surgery was done based on a mammogram only (no MRI). How does he know that he got everything? If he thinks he should go back and take out more, the advice may carry more weight.

Dx 5/26/2016, IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 6/8/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 7/7/2016 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Targeted Therapy 9/6/2016 Herceptin (trastuzumab) Targeted Therapy 9/8/2016 Perjeta (pertuzumab) Radiation Therapy 11/30/2016 Whole-breast: Breast, Lymph nodes
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Mar 22, 2021 08:55PM kathabus wrote:

Hi--There was a trial called the AMAROS Trial (After Mapping of the Axilla: Radiotherapy Or Surgery?). And the data showed that the distant metastasis and overall survival were essentially the same with both the removal and the radiation. The only thing that was significantly different was the lower quality of life with the lymphedema that you could get with the removal.

So that kind of explains the science behind doing radiation vs surgery. If it were me, I would ask the surgeon about this trial and ask why he feels he would still do the surgery. I think talking to him about this data would be a good conversation and you may get the insight that you're looking for. Good luck to your friend!

Diagnosed at 43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/14/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/20/2020 Prophylactic ovary removal Hormonal Therapy 8/20/2020 Femara (letrozole)
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Mar 22, 2021 09:31PM Beesie wrote:

An ALND is removal of level I and level II lymph nodes. To my understanding, level III nodes are not usually removed so I am assuming that when the surgeon says "complete node removal", he does not mean removal of level III nodes as well, but is planning to do an ALND. https://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/tests-and-procedures/axillary-lymph-node-dissection/?region=on

Surgeons operate. It's what they do. It's the role if the MO to evaluate the entire situation and recommend the full course of treatment. Generally based on that, I would put more faith in what an MO has to say than what a surgeon has to say. That said, there are treatment guidelines. Is your friend in Canada, and if so, which province? Each province has treatment guidelines and it might be possible to find them on-line to see what they say about this type of situation. The NCCN guidelines are used in the U.S.. Here is their page about node removal:


Did you friend see the MO prior to surgery? With an HER2+ cancer, it's odd that chemo wasn't done prior to surgery, and odd too that the surgery was done based only on a mammogram, with no MRI. That raises some questions as to who recommended this course of treatment.




Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Mar 23, 2021 12:34AM - edited Mar 23, 2021 12:39AM by buttonsmachine

I would go with the Medical Oncologist on this one - in my opinion, extra node removal should be avoided when possible.

Lymphedema is not just about some swelling, it can cause serious problems and even infections. (I was recently hospitalized with a lymphedema related infection.) I don't say that to scare you, and of course that may never happen to your friend, but I think too often people say it's "just lymphedema" when lymphedema can really be huge problem even years down the road. I'd absolutely avoid removing any more lymph nodes if the MO gives you his/her blessing. Best wishes to you!

Diagnosed at 32. Local recurrences one year later, probably due to needle seeding at inital biopsy. Now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 10/1/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/31/2017 Whole-breast Hormonal Therapy 3/31/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lymph node removal; Mastectomy: Right Chemotherapy 11/30/2017 AC Surgery 3/31/2018 Lymph node removal; Mastectomy: Right Radiation Therapy 4/30/2018 External: Lymph nodes, Chest wall Chemotherapy 6/30/2018 Xeloda (capecitabine) Hormonal Therapy 7/30/2018 Zoladex (goserelin) Hormonal Therapy 2/1/2019 Aromasin (exemestane) Hormonal Therapy 9/30/2019 Faslodex (fulvestrant) Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2- Targeted Therapy 8/30/2020 Ibrance (palbociclib) Dx 1/2021, IDC, Stage IV, metastasized to liver/lungs Chemotherapy 1/14/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Mar 23, 2021 05:01PM stephincanada wrote:

Thanks, everyone, for this very helpful information. I will pass it along to my friend.

Beesie: to answer your question, she was referred directly to the surgeon, and the M.O. became involved post-surgery. From what I understand, it was the surgeon who decided the course of treatment.

Dx 5/26/2016, IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+ (IHC) Surgery 6/8/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 7/7/2016 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Targeted Therapy 9/6/2016 Herceptin (trastuzumab) Targeted Therapy 9/8/2016 Perjeta (pertuzumab) Radiation Therapy 11/30/2016 Whole-breast: Breast, Lymph nodes
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Mar 23, 2021 05:38PM PebblesV wrote:

Hopefully not too late for me to chime in as I can offer a personal experience... I completely agree with what others have been saying re: the higher risk of a full axillary node dissection vs a sentinel node biopsy (the latter is what your friend had). There are several studies that have come out showing that the long-term survival for those who did just sentinel node biopsy was equal or even better in cases than those who did a full axillary node dissection, mostly due to the risks of the bigger surgery and bigger risk of lymphedema. Here are a couple of those studies:

https://www.hindawi.com/journals/ijbc/2014/513780/

https://www.breastcancer.org/research-news/outcome...

I was in a very similar situation just over 2.5 years ago. I was diagnosed with Stage II breast cancer and had 2 positive nodes. My surgeon wanted me to do a full axillary node dissection. After conducting my own research and finding these articles showing similar or even favorable long-term survival rates amongst those with positive nodes who did NOT do an axillary node dissection, and my surgeon and radiologist telling me that the risk of lymphedema with ALND was a whopping 50% while that risk with radiation was much smaller at 15%, I declined the full axillary node dissection. Even though I was getting pressure from my surgeon and radiologist, they had to respect my decision. I have no regrets.

Fast forward to when I completed radiation and spoke with my radiologist who declared me "healed" and told me he targeted my nodes during the radiation as well and he simply needed to know whether I did the ALND or not so that he could target his radiation therapy accordingly. He seemed to forget that he had supported the surgeon's reco at the time, and even told me months later that I made the right decision to not do the full axillary node dissection. And I got through radiation very well with minimal side effects so it felt good knowing I got the full radiation therapy, did not experience SEs, and still have my nodes.

Fast forward to 2.5 years later... I just received a clear mammogram! And I feel good every time I go swimming or play tennis - things that really require me to extend my arm - that I do not have any issues with lymphedema or reduced strength in my arm from missing nodes.

My advice to your friend is to do the research, read the studies that have come out recently, and make an informed decision based on her own personal risk/reward assessment. For me, the risk/reward balanced too far towards the risk with the 50% chance of lymphedema with a full axillary node dissection. But it felt balanced enough for me to go through radiation, and I also researched how to get through it with minimal SEs, and right now I'm still taking tamoxifen as SEs have been minimal there for me too, so again, risk/reward balance. I have no regrets declining the full axillary node dissection.

Hope that helps!

Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 23, 2021 05:51PM Beesie wrote:

steph, with your friend having an HER2+ cancer, the fact that the surgeon decided on the course of treatment without first referring her to an MO makes me question anything else this surgeon recommends. Maybe that's not fair, but everyone here knows that HER2+ patients might get chemo first and should see an MO before surgery, so how could her surgeon not know?


Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Mar 23, 2021 06:42PM LaughingGull wrote:

Hi all,

Although indeed the trend is towards removing less nodes in favor of radiation, the recommendation in certain cases (eg palpable swollen lymph nodes confirmed positive for cancer at diagnosis, which was my case) still remains ALND. From the AMAROS study someone referenced above:

Axillary lymph node dissection and axillary radiotherapy after a positive sentinel node provide excellent and comparable axillary control for patients with T1-2 primary breast cancer and no palpable lymphadenopathy. Axillary radiotherapy results in significantly less morbidity.

The NCNN guidelines Beesie posted above, if applied to your friend, if I read that correctly, given the four positive nodes found during surgery, point her straight to ALND. If I were in your friends feet, I would ask the surgeon why he recommends ALND (maybe those 4 nodes were bursting with cancer, showed extranodal extension, LVI, something else), that he/she points me to the relevant papers or guidelines in which the determination was based, and I would also probably ask for a second opinion, on top of trying to assess the lymphedema risk, to the extent possible, based on known risk factors. That is what I did in that situation, and in my case all routes (oncologist, surgeon #1, surgeon #2 at top cancer center, plus reading of research papers) pointed to the ALND recommendation as the best way to avoid recurrence. I also got radiation, on top of the ALND.

Lymphedema is indeed very serious and hard to predict, but also mysterious and there seems to be a mix of genetic and environmental factors at play. Some patients get one lymph node removed and get lymphedema right away, and some get all axillary level I and II nodes removed and don't get it.

In my case I had ALND as recommended, and fully accepted the possibility that I may get lymphedema -which so far I didn't get. I am on the thin side and also a swimmer, and my range of motion a few months after the surgery (but I did A LOT of physical therapy and stretching exercises) was as good as in the non-cancer side if not better -the extension is definitely better due to all the extra stretching on that side. I am three years out of that surgery and I have zero side effects from the ALND.

Just to throw another opinion out there, since it sounded like a consensus was forming on questioning that surgeon's call, while there may be good reasons for it. And also to offer hope that even with an ALND, she may not have that high a risk of lymphedema or other side effects.

Best of luck,

LaughingGull

ACx4, THPx4, HP (to complete 1y); Nerlynx (1y); AI (expected 10y), Surgery: BMX + ALND, Reconstruction, Oophorectomy. Radiation. Dx 10/26/2017, IDC, Right, 3cm, Stage IIB, Grade 3, 2/6 nodes, ER+/PR+, HER2+ (IHC)
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Mar 27, 2021 06:11PM DeniseML wrote:

Steph- I can only talk of my current experience. Diagnosed with HER2* IDC, Inflammatory component in 8/25. I wanted immediate surgery, but, SO refused stating Neoadjuvant chemo was recommended treatment first. She explained it was the best way to know if cancer would be responsive to chemo Plus immunotherapy. SO had already arranged for MO consult same day. I had 6 treatments, 3 weeks apart, of Taxotere, Carboplatin plus 2 targeted agents( Herceptin & Perjeta). SO follow up after 3rd treatment to verify improvement in symptoms and MRI BREAST repeated after 6th treatment. I had UMX with ALND. SO explained she would remove as few as possible because I would need radiation . Had 7 level I nodes removed. SO then referred me for radiation ( all left chest wall & level I, I, & III lymph nodes which I am currently receiving. I also resumed targeted therapy with HP To complete 18 treatments ( 1 year of tx.) just as explained by others. Complete ALND and radiation both increase risk of lymphedema. Trimodal therapy was mandatory for me because of inflammatory component. The research I did confirmed everything the SO recommended every step of the way. It may help to obtain a 2nd surgical opinion before making decision. I wish her the best.

Dx 8/3/2020, IDC/IBC, Left, 3cm, Stage IIIC, Grade 3, 0/7 nodes, ER-/PR-, HER2+ (FISH) Chemotherapy 8/25/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 1/15/2021 Lymph node removal: Underarm/Axillary; Mastectomy: Left Immunotherapy 2/24/2021 Radiation Therapy 2/24/2021 Whole-breast: Lymph nodes, Chest wall
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May 24, 2021 10:48PM Docy wrote:

Hi ,

Came across this forum today.

I posted in chemo forum about my situation and LeesaD and Mebo repliedwith good information.

I was treated with CTH for HER2, 6 rounds and had lumpectomy and SLN biopsy on May 13 th.

I had positive 2 lymph nodes on PET scan prior to chemo, unfortunately they were not biopsied and tagged in my local hospital. Now on SL biopsy I have micromestasis of 0.3 mm size in one of my lymph node. Breast tumor regressed. Since I have micrometastasis, my case is not considered as pCR.

Bessie posted NCCN guide lines, is very helpful, however in my case it is still not clear even though my MRI and US imaging just before surgery did not show enlarged lymph nodes. Waiting for tumor boards recommendation and Will post it.

Puzzled and anxious.

Thanks for all the above posts, they were all helpful.



Docy Dx 12/2/2020, IDC, Left, 1cm, Stage IIB, Grade 2, ER-/PR-, HER2+ (FISH) Chemotherapy 12/20/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 5/13/2021 Lumpectomy: Left Targeted Therapy 6/16/2021 Kadcyla (T-DM1, ado-trastuzumab) Radiation Therapy 6/21/2021 Whole-breast: Breast, Lymph nodes
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Jun 17, 2021 09:28PM AlwaysMeC wrote:

Hi all. I figured I would bump this thread instead of start a new one since it's fairly recent.

I came across this recent article in JAMA citing a Swedish study of approx 49k women diagnosed with early stage BC having better outcomes with breast conservation and radiation after adjuvent therapy versus mastectomy (assuming that includes node removal).

https://jamanetwork.com/journals/jamasurgery/fulla...

I am HR neg HER2 pos, so I was only able to get a clinical staging of T1N1, 1.8mm primary and one obvious node in the axilla. My question is, how would I be able to weigh these findings if the staging is done for neoadjuvent treatment, when I wouldn't know otherwise if there were more positive nodes at diagnosis because I didn't get a surgical biopsy? I am nearing the end of neoadjuvent treatment and will have to make a decision soon.

As a layman it makes sense that possibly saving nodes and conserving tissue would offer a chance of less distant spread since the cancer will find a home in the breast if that's where it recurs. However, if nodes have some micrometastasis not found during surgery, that also seems risky, although not as risky according to the study. How does chemo rid lymph nodes of cancer throughout the body? Does anyone have any information on how that works?

During the surgical consult, the breast surgeon was leaning toward conserving as many nodes as possible. I am concerned that a mastectomy would indicate removal of sentinal nodes and not provide as good of an outcome as breast conserving with radiation.

Dx 4/2/2021, IDC, Left, 1cm, Stage IIA, Grade 2, ER-/PR-, HER2+ (FISH)
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Jun 18, 2021 06:31AM Melbo wrote:

chemo is a systemic treatment, meaning it goes throughout your entire body killing any fast growing cells it finds. with me, I had a node show up on ultrasound that looked suspicious, but biopsy was negative. They pulled the node during surgery (lumpectomy) though, and it reacted to the chemo like there had been cancer there, but there were no live cancer cells. They gave me whole breast radiation just to be safe to make sure any other cells that might have escaped the chemo were also dead.

From what I understand, with either surgery they will look at nodes, but try to leave as many as possible in place because of risks of lymphedema. I did see a studyrecently that seem to indicate lumpectomy with radiation has better outcomes than mastectomy — but it could be the same article you’re referring to.

Diagnosed right before my 42nd birthday. One husband, two dogs, one cat and no kids. Dx 7/16/2020, IDC, Left, 2cm, Stage IIA, Grade 3, 1/7 nodes, ER-/PR-, HER2+ Targeted Therapy 8/7/2020 Herceptin (trastuzumab) Targeted Therapy 8/7/2020 Perjeta (pertuzumab) Chemotherapy 8/7/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/20/2020 Lumpectomy: Left; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right) Radiation Therapy 1/31/2021 Whole-breast: Breast, Lymph nodes
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Jun 18, 2021 12:07PM kathabus wrote:

Yes, if you have a positive node after surgery, the guidelines for most situations are to radiate the rest of the nodes to kill any cancer that might be there vs surgically removing more nodes.

You are correct in the sense that you don't know your TRUE staging if you don't go in for more nodes. That did bother me a bit. I'll never know if I had more than 1 positive node. I guess I just trusted the process. There are still people who want to go in for more, though. You just need to understand the risk of lymphedema.

I didn't really follow the thinking with "leaving more nodes equals less chance of distant metastasis." I may be misunderstanding that. But to clarify....if you have cancerous nodes, they do have to be dealt with by either radiation or removal. That is definitely a route of how breast cancer spreads throughout your body.

Diagnosed at 43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/14/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/20/2020 Prophylactic ovary removal Hormonal Therapy 8/20/2020 Femara (letrozole)
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Jun 18, 2021 03:17PM AlwaysMeC wrote:

Thanks Melbo. I suppose I will have to trust the staging process. I was leaning heavily towards mastectomy, but as I researched more, it seems the latest studies result in lumpectomy and radiation with some node removal having better progosis.

Kathabus, my thinking behind nodes preventing spread was if in the case of recurrence in the breast, the nodes will be there as a step to fight off or filter rogue cancer cells from spreading to normal tissue. On the other hand,, taking them out would remove a route for spread as well. There's so many factors to consider and trying to get the best outcome as a person who is non medically trained, and has no biological or chemical background is overwhelming when the decision is ultimitely placed on us.

Dx 4/2/2021, IDC, Left, 1cm, Stage IIA, Grade 2, ER-/PR-, HER2+ (FISH)
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Jun 18, 2021 03:58PM exbrnxgrl wrote:

AlwaysMeC,

You know, ultimately all medical decisions are left up to us regardless if we have medical backgrounds or not. Doctors propose treatment plans but we are always the ones who have the right to say yes or no. Doing a bit of research can help your decision making process and asking your doc why he recommends a certain approach also play into our decision making process. Ultimately there are no guarantees just historical data. It should be noted that bc cells travel through the bloodstream as well. I had a single sentinel node come back positive and did have axillary node dissection. However nothing that we knew from imaging, biopsies and a bmx gave us any reason to believe that I was already metastatic. Yup, I already had a 2 cm bone met, discovered by accident. So, my sentinel nodes either did not “catch” the cancer or it traveled through my bloodstream but we will never know. Yes, I understand the LE risk and I do have very mild LE in my upper arm. So often we look for guaranteed outcomes but if I have learned anything about bc it’s that guarantees are simply not possible. We simply make the best choices with the information we have at the time. Take care

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)

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