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Topic: MO says Oncotype test underestimates recurrence risk....

Forum: Stage I Breast Cancer — Meet other members with a Stage I breast cancer diagnosis to share information and support.

Posted on: May 29, 2020 12:37AM

Danee78 wrote:

Hi friends. I was diagnosed in January, and I had a second opinion appointment with a medical oncologist at Memorial Sloan Kettering a couple of days ago. I wanted information about my recurrence risk with and without endocrine therapy. My Oncotype test said that I have a 3% risk of recurrence in the next 9 years if I take tamoxifen. The oncologist said to take the percentage of risk on Oncotype tests with a grain of salt...She said studies coming out in recent years have shown that recurrence risk is higher than oncologist used to believe. She said that she was confident that my recurrent risk it’s actually more like 10% over the course of 15 years, even with endocrine therapy. Without it, she thinks my risk is 15%.

I was quite surprised to hear this. Has anyone else been told that the percentage of risk reported by the Oncotype test underestimates risk?

Dx 1/29/2020, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 2/25/2020 Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/9/2020 Aromasin (exemestane)
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May 29, 2020 04:40AM - edited May 29, 2020 04:58AM by KeepingCalm

Hi Danne,

Yes, that happened to me although under slightly different circumstances and kicked me into doing chemo of which I'm now through 2 of 4 rounds so even though was initially very disappointed about that am now feeling like I'm making progress and so far hasn't been nearly as bad as one might think.

In my case I was on a 2 week clinical trial prior to surgery of a drug that MO feels could definitely have influenced the tumor proliferation factors that factor into the Oncotype. That said, a 2nd opinion felt that was just speculation and suggested a middle step could be to get the Mammaprint which would place me at either low or high risk instead of just over the line into intermediate as my Oncotype came back. The 2nd opinion also felt that even without Mammaprint I could reasonably make the decision to forgo chemo. However, insurance might not have covered the second test and more importantly for me one could speculate that there could have been the same underestimate issue.

In the end, while I am strongly Er+, my PR was + but low, but HER2- and all of that combined with my relatively young age (39) had my MO say that her projection for me was more like like 13% or so recurrence risk with just surgery and endocrine therapy and she said her perspective was that this was not a “good enough" outcome if the option of chemo + endocrine therapy could theoretically bump me well into less risk - in my case she suggested 5-7%. She felt this was more important given the number of decades ahead of me. That said it is of course a very personal decision and I don't know yet what being on long term endocrine therapy will be like. Stats have benefits but also don't account for everything. After all I fell into the much less likely I'm getting breast cancer at all in the first place at my age and am trying to do everything in my power to put me on the other side of those odds going forward.

Have you input your stats? In my case these were helpful to me in that the were very much in line with what my MO felt my recurrence risks are.

http://www.lifemath.net/cancer/


https://breast.predict.nhs.uk/



Dx 2/2020, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 3/23/2020 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 5/7/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 29, 2020 04:48AM MelissaDallas wrote:

Danee78, wasn’t this and the variables discussed in great depth and detail in your other thread?

https://community.breastcancer.org/forum/78/topics/876292?page=1#post_5546763


LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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May 29, 2020 09:12AM Danee78 wrote:

No, this is about the Oncotype test basically being wrong.

Dx 1/29/2020, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 2/25/2020 Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/9/2020 Aromasin (exemestane)
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May 29, 2020 09:14AM Danee78 wrote:

It sounds like they just don't know for sure what your recurrence risk is and are just guessing to some degree. I thought the Oncotype was a sophisticated test you could really trust....

Dx 1/29/2020, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 2/25/2020 Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/9/2020 Aromasin (exemestane)
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May 29, 2020 09:21AM MelissaDallas wrote:

I think that was covered in the other thread as to discussion of the same Oncotype score being significantly different if you are,say, 30 versus 70 at age of diagnosis. If you are old the score might overestimate, thus the other optional calculation, If you are young that is why the score could lead an oncologist to still recommend chemo if you are very young even if the score would normally indicate “no chemo.”

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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May 29, 2020 09:45AM Peregrinelady wrote:

I think the Oncotype is a good predictor for the first five years, but not necessarily after that. This is just my opinion based on the fact that I had a low Oncotype (12) and a high BCI.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/18/2015 Mastectomy: Left Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/18/2016 Mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 7/31/2016 Arimidex (anastrozole) Hormonal Therapy 7/20/2020 Femara (letrozole)
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May 29, 2020 06:11PM RatherBeSailing wrote:

Oncotype doesn't take into account tumor size and grade.


https://www.ascopost.com/issues/august-25-2019/tum...


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May 30, 2020 03:05PM BCat40 wrote:

RatherBeSailing, thanks for posting that article. It's pretty relevant to me because I am 40 and had an Oncotype score of 20, which puts me in that bucket where they are scratching their heads as to whether or not to recommend chemo.

I also note that Oncotype doesn't take into account whether there was lymphovascular invasion. I am clinically low risk because my tumor was 8mm with a mitotic score of 1 and ki67 of 5%, also there was no LVI. However my oncotype score puts me in the intermediate risk category. According to Oncotype I would get a ~3% benefit from ET and a ~4% benefit from CT. I am getting a second opinion from another MO next week.

Dx at 40 Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/1/2020 Whole-breast: Breast
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May 30, 2020 03:32PM Cowgirl13 wrote:

Bcat, I highly recommend getting a second opinion.

Be the kind of woman that when your feet hit the floor each morning the Devil says: 'Oh crap! She's up! Dx 5/28/2009, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 6/17/2009 Chemotherapy 8/2/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)
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May 30, 2020 03:42PM BCat40 wrote:

Cowgirl, I managed to get myself a telemed consult for monday with a doctor at another breast center who works with a lot of premenopausal women. Another issue is that the largest cross section of my tumor came back as 50% ER positive, meaning half the cells don't have estrogen receptors. So if cells with no estrogen receptors are floating around hormone therapy is not going to help. My current MO said the hypothesis of the 1.6%-6.5% benefit to women under 50 of CT in the intermediate risk oncotype category is the chemopause effect. So I said, are you saying that if I have cells floating around with no estrogen receptors I'm still not getting a CT benefit and there's no way to kill them? She didn't really have an answer and suggested herself that I get a 2nd opinion.

Dx at 40 Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/1/2020 Whole-breast: Breast
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May 30, 2020 09:13PM Cowgirl13 wrote:

BCat, glad to hear that you will be getting a second opinion. I found my oncologist through getting a second opinion--the first oncologist was very highly rated but I wasn't really at ease with her. Loved my oncologist and still see him once a year. Keep us posted.

Be the kind of woman that when your feet hit the floor each morning the Devil says: 'Oh crap! She's up! Dx 5/28/2009, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 6/17/2009 Chemotherapy 8/2/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)
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May 30, 2020 09:53PM KathyL624 wrote:

i thought recent studies clarified the value of oncotype. I was diagnosed 4 years ago and my oncologist at Sloane Kettering put a lot of stock in the oncotype results

Dx IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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May 30, 2020 09:57PM Danee78 wrote:

Kathy, do you have a link? My first MO seemed to trust the Oncotype, second one from Sloan did not.

Dx 1/29/2020, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 2/25/2020 Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/9/2020 Aromasin (exemestane)
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May 30, 2020 11:28PM BCat40 wrote:

Danee, I think Kathy may be referring to the TAILORx studies:

https://ecancer.org/en/news/16128-asco-2019-new-tailorx-data-guides-adjuvant-therapy-in-younger-breast-cancer-patients

https://www.oncotypeiq.com/en-US/announcements/TAILORx

Dx at 40 Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/1/2020 Whole-breast: Breast
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May 30, 2020 11:38PM Danee78 wrote:

Thanks for the link BCat49

Dx 1/29/2020, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 2/25/2020 Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/9/2020 Aromasin (exemestane)
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May 31, 2020 11:43AM - edited May 31, 2020 11:44AM by BCat40

Danee, it is interesting that your MO thinks Oncotype may be understating the risks, because in comparing with some other ladies who had their Oncotypes done a few years ago, they have been lowering the risk numbers for the same scores. Same happened with my mother's--she was node negative, oncotype 13; they told her she had an 8% risk with Tamoxifen alone. Mine was node negative, 20, and mine says 6% risk with AI/TAM alone. My mother got her Oncotype in 2015 and mine was this year.

Dx at 40 Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/1/2020 Whole-breast: Breast
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May 31, 2020 11:56AM Danee78 wrote:

BCat40, it sounds like a crapshoot. I feel like they can really only give us a ballpark figure. They keep learning new things too. I know my recurrence risk is low, but I don’t know really how low.

Dx 1/29/2020, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 2/25/2020 Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/9/2020 Aromasin (exemestane)
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May 31, 2020 12:02PM BCat40 wrote:

I agree, sometimes it feels like they're fumbling in the dark.

Dx at 40 Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/1/2020 Whole-breast: Breast
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Jun 1, 2020 11:05PM - edited Jun 1, 2020 11:27PM by BCat40

Update, had consult with second MO. She thinks my Oncotype score of 20 w/ a 6% distant recurrence risk w/ AI or TAM translates to a ~12% risk with no treatment. She says the drugs have a ~50% benefit so she is doubling it, but I do think it's a little inflated since she seems to be using the percent benefit of any recurrence rather than just distant recurrence. If you take that the AI/TAM gives a ~35% reduction in distant recurrence risk, I would have a ~9% risk w/ no treatment.

I asked about the RS-pathology-clinical (RSPC) tool from Genomic Health that would factor my small tumor size etc into the risk score. She said she did not have the tool handy, but that it would most likely bring my score down due to the favorable clinical features. She said it would make me feel better but that she didn't want to use it to discourage me from getting treatment. I thought that was a refreshingly candid statement.

She thinks that w/ my 20 oncotype score and younger age, it would "not be wrong" for me to have chemo, but that it would probably only give me a 1-3% benefit.

So my options are:

1) Have no further treatment, accept my 9-12% distant recurrence risk and move on with my life;

2) Do just chemo and get a 1-3% percent risk reduction (however I think the incremental benefit is calculated as if I were also doing ET, as it was in the TAILORx study, if not doing ET, the benefit by itself may be a bit higher);

3) Do just hormone therapy and get a ~3% risk reduction (~6% according to this MO; I think that is inflated);

4) Do both hormone therapy and chemo, however MO could not say that the risk reduction would be cumulative as opposed to having partially overlapping effects.

I will not do #4. I am either picking one treatment or doing no further treatment and moving on. Benefit of chemo--would be a 3 month treatment, then I could move on. Downside--highly toxic. Benefit of ET--somewhat less toxic than chemo. Downside of ET--would be for 5-10 years, with no guarantee that I would be able to tolerate any of the drugs for any length of time.

If I do chemo the window to do it is within 3 months of surgery. So I have the month of June to decide while undergoing rads.

Dx at 40 Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/1/2020 Whole-breast: Breast
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Jun 1, 2020 11:31PM Danee78 wrote:

Hi BCat40. Are you sure about not doing number four? Some people do well with chemotherapy, and you might also. Same thing with endocrine therapy. With endocrine therapy, if you can’t stand it, you can always stop. There’s no harm in trying it. You have to remember how young you and I are (I’m 42). We have many estrogen-filled years ahead of us. Many years ahead of us in which to get a recurrence. The risk is there for life, and the window of opportunity to reduce that risk is during these first years after the diagnosis. I understand where you’re at right now, feeling resistant to treatment. I felt like that also. You’re going through radiation, I can see why you want all this to end.

My surgeon told me that Oncotype score cut off for getting out of chemotherapy was 15 for people of our age.

Where did you find your second medical oncologist? Mine was from Sloan Kettering, it’s a world famous cancer center, and she did say to take the Oncotype score with a grain of salt. What if she’s right in your risk is actually higher than 6%. 😱 Another thought about risk and all these percentages. At our age, we were really unlikely to get cancer in the first place, but here we are. Just something to ponder.

Another thought about age and risk. The oncologist pointed out to me that the Oncotype report is only looking at nine years. The risk actually extends into the rest of your life, not just 9 years. She described the risk as having a long tail. So your risk of ever getting a breast cancer recurrence is definitely more than 6%.

There’s no right answer, and we all make our own risk/benefit analysis. I hope that you make the one that’s most comfortable for you, and I’m sorry that you’re going through this experience!


Dx 1/29/2020, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 2/25/2020 Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/9/2020 Aromasin (exemestane)
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Jun 2, 2020 11:16AM BCat40 wrote:

Hi Danee, the 2nd opinion was from an MO at Weill Cornell, she has her undergrad from Harvard, MD from Duke and MPH from Harvard. My original MO happened to practice at MSK before coming to my current breast center.

I feel like the incremental benefit of chemo if I decide to do ET anywayis too small for the toxicity. The treatment also has a .5% risk of causing leukemia.

Dx at 40 Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/1/2020 Whole-breast: Breast
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Jun 2, 2020 12:45PM LillyIsHere wrote:

BCat40, I can see your diagnose is ILC, same as mine. I was told that chemo doesn't work well in our case and OS+AI works better. Also, Oncotype doesn't mean much in ILC as it does in IDC. From your 4 options, what option was the one your MO highly suggested?

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/1/2019 Femara (letrozole)
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Jun 2, 2020 01:43PM - edited Jun 2, 2020 04:15PM by BCat40

She basically said chemo was up to me and would recommend ten years of lupron plus AI or tamoxifen (or I would do a different SERM Toremifene since I take Wellbutrin). I have heard that about ILC too, but I also heard Megan Cruz at the Cleveland Clinic speak at a recorded event, she is known for treating lobular. She said the idea that chemo doesn't work in ILC is probably an overgeneralization. Also the conventional wisdom is that ILC is highly hormone positive yet the largest cross section of my tumor left at my hospital lab was only 50% ER+ and the sample that was sent to Oncotype is potentially even lower. So I'm not sure how much to buy into the conventional wisdom. I just don't know if I can ever get there to allow them to inject me to shut down my ovaries.

I am also thinking about having a sample sent out to Mammaprint. That Nature article talking about the LobSig test for ILC mentioned that mammaprint has been validated for node negative ILC.

Dx at 40 Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/1/2020 Whole-breast: Breast
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Jun 2, 2020 02:53PM LillyIsHere wrote:

I wasn't offered Mammaprint. Even for Oncotype, I was told that the tumor was too small to test it. Scary since I had a small breast tumor with positive nodes. The sneaky ILC!

How many nodes did you have removed?

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/1/2019 Femara (letrozole)
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Jun 2, 2020 04:14PM BCat40 wrote:

Lilly, I had one node removed, and it was negative, so they didn't take any others. I had a mammogram, ultrasound and MRI prior to surgery so I'm fairly comfortable they had the full picture. That is def sneaky to get into your nodes but have such a small tumor! But one thing I learned since getting cancer, is that being node-negative doesn't count for as much as you'd like because there could still be undetected tumor cells floating around. :(

Dx at 40 Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/1/2020 Whole-breast: Breast
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Jun 2, 2020 06:09PM LillyIsHere wrote:

My surgeon took 4 sentinel nodes and one extra that was on the way. The extra one was positive. This makes me worried how ILC has skipped the nodes to nest to an outside node. I asked the question if letrozole will stave/kill the cancer cells or will make the cells not to multiply. One MO said I don't know the second said it does both. I have a feeling doctors don't know for sure how these toxic drugs work and why they work up to 50% of the time, and why cancer cells mutate, etc.

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/1/2019 Femara (letrozole)
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Jun 3, 2020 01:32AM MikaMika wrote:

Lilly,

What was in this extra node? Isolated tumor cells or something bigger?

Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Jun 3, 2020 12:27PM LillyIsHere wrote:

I had a node with small metastatic ILC and the other one outside sentinel group of nodes had ITC. ITC are cancer cells that wonder around and can find a place to land so I take them seriously. That's how the show starts, first with ITC. I read and MO agreed that ILC is very sneaky and unfortunately doesn't create lumps that can be caught with MRI, etc. In my case ILC in breast was very small and located towards middle of chest, on the opposite direction one SN node was metastasized and then ITC to another one outside SN group. Makes me nervous on how ILC grows. I was told for ILC ovarian suppression + AI work better than Tamoxifen.

Mika, what treatments are you taking? Did you have any positive nodes?

Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 12/1/2019 Femara (letrozole)
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Jun 3, 2020 12:39PM - edited Jun 3, 2020 12:46PM by MikaMika

I had one sentinel node removed with rare ITC. But my surgeon told they never know how those cells appeared in lymph nodes - travel on their own (which is not good) or because of biopsy and surgery, i.e. "passive transportation" (this is better). I had BMX+radiation. Now on Lupron+Arimidex.

Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Jun 3, 2020 04:23PM - edited Jun 4, 2020 09:02PM by BCat40

I'm now getting a third opinion next week with an MO at Dana Farber who does research in ILC. Will report back what he has to say about Oncotype.

Dx at 40 Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/1/2020 Whole-breast: Breast

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