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Topic: New Here and Just Diagnosed

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Dec 13, 2018 05:34PM - edited Jan 9, 2019 10:20PM by justme1964

justme1964 wrote:

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Jan 7, 2019 10:27PM AliceBastable wrote:

Same here, micromets in one node. Oncotype of 17 meant no chemo.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jan 8, 2019 12:21AM - edited Jan 8, 2019 12:21AM by Salamandra

Hey Justme,

Congrats on getting done with surgery!

I think palpable means that they are feeling something in the nodes that might be cancer. They will send everything for pathology and then you will have the full report. Even after that, the doctor might send for an oncotype or mamma print test which would take more time to get the results. The waiting time sucks so much. Nothing to be done really, plow through however works for you.

If they do find cancer in the nodes, it still doesn't necessarily mean chemo. And if they don't find cancer, it doesn't necessarily mean no chemo. My medical oncologist sends for oncotype even if someone is node negative and small tumor, and will do chemo if it comes back high. So you really still don't know.

Hang on and take care of yourself!

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 8, 2019 12:09PM justme1964 wrote:

Making me feel a little better. This is all confusing. Did not know about more testing. I keep hearing oncotype, which the doc did mention. Where I am getting thrown off, after biopsy, mammogram, ultrasound I was told one thing. Now after lumpectomy and node biopsy everything I was told could change. From what everyone is telling me my hormone receptors positive and her2 negative is very good, doc said tumor is well behaved/contained,and less aggressive. then doc said if I have more then 2 positive nodes the more surgery. So my head is just spinning.


I already have already contacted Sloan Memorial for a second opinion to make sure I am getting the appropriate treatment. I get mad at my doc, but I guess I really need to give her a break.. she is just doing what is best for me. I was just thrown off when she said no drain after my surgery then I woke up with one. Prior to surgery, I did go with a list of questions which this was one question and she said no at that time.

I think I am asking the right questions, but guess not. but don't know what to ask if I don't know what is what.


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Jan 8, 2019 05:58PM - edited Jan 8, 2019 06:01PM by Salamandra

I'm so glad you're getting a second opinion! FWIW, I'm being treated at MSK and I've been very impressed.

Based on my reading, it seems like the trend is away from surgical removal (they call it axillary dissection) for positive nodes and towards radiation only. The evidence shows that it's equally effective with much fewer side effects. So it does make me nervous that your doctor is assuming that surgery would be the next step. I'm sure there are cases where it's warranted, but I think a second opinion on ALL of it is a really good idea, and keep asking questions and making them explain until you are really confident you understand and they make sense.

I got a little frustrated with my breast surgeon too. She gave me the impression that I would only need the oncotype if I had positive nodes, and if not, I would get no chemo without the oncotype. Later the oncologist said no, either she spoke badly or I misunderstood, and if I had had positive nodes my oncologist might have skipped the oncotype and gone straight to chemo (I'm young for breast cancer) but with negative nodes she always sends for oncotype. Well you know what - I did not misunderstand. The surgeon was clear. Me, my friend in the room, and my friend on the phone taking notes (who is an MD) all heard and understood the same thing. I think that it's a division of labor thing. The surgeon is the expert at surgery and screening, not at decision making about genetic testing and chemo.

For whatever reason, the protocol seems to be that the surgeon is the gateway into cancer treatment, the first doctor many of us see, who gives us the first explanations and introductions. My surgeon gave her best understanding and guess about what would happen after she was done with her initial role, but she didn't *know* and it's not her job to know. She sounded super confident and sure because... well, I think because that's how surgeons are....

Yep, everything *can* change after the surgery pathology comes back. Usually it doesn't, and if it does change, it doesn't change very much. But it *can.* My surgeon definitely didn't really prepare me for that. And in my case, it wouldn't have mattered because for me it actually didn't change. But because I'd been doing my own reading and education, I learned from other sources that it could have, and that undermined my trust in her. But I get it, they can't tell us everything they learned from years of school and practice and experience in a two hour initial consult, they have to pick and choose and focus on what they think is most important at the time.

Don't feel like you're doing anything wrong. I feel like the doctors aren't really trained in the art of educating patients and the psychology of it. If you're not understanding, it's likely more on your doctor than on you. And I don't say that to blame them. They get thrust into that role, but probably ideally there would be educator specialists with a deep cancer knowledge who would be part of the initial process and first appointments. It's OKAY for surgeons not to be great at that part of the job as long as they're great at the medical/surgical part. But we still have to make sense of things. I've found these boards super helpful for that.

(From my understanding, what medicine thinks about positive nodes is changing too. Now it understands that nodes is only one way the cancer *can* spread, finding it in nodes doesn't necessarily mean it *has* spread beyond the nodes, and not finding it nodes doesn't mean it *hasn't* already spread to be waiting dormant in other parts of the body. They treat the nodes (whether dissection or radiation) to keep it from spreading *from* the nodes, but it doesn't mean they were wrong about your tumor being low risk. You can have multiple positive nodes and a very low oncotype/mammaprint).

Anyway, like I said, I'm really glad about the second opinion, and keep pushing as much as you need to, to understand. Don't let yourself feel rushed or pressured. Keep asking questions here and try to do what you need to do to get through this objectively head-spinning time - whether that's distracting yourself or immersing yourself deeper in cancer scholarship. Do you mind if I ask, are you located in the NYC area? There are a lot of really good hospitals around here.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 8, 2019 07:30PM - edited Jan 9, 2019 10:19PM by justme1964

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Jan 8, 2019 08:27PM Mncteach wrote:

I am glad you have decided to go with second opinion. At first I wasn’t but because of where I was there are no PS, so if I wanted reconstruction I had to go to another hospital. I am so glad I did. It all felt wonderful for me.

As for the drains, I hear you! I had to have revision surgery due to necrotic skin and PS did say drains would be possible but unlikely. Yet, low and behold I woke up with drains anyway. At least I was prepared there might be a possibility.

I do not have ER positive BC so I cannot speak to that well, but can say that chemo has been on the table the whole time because of the ER/PR status but was told if lymph nodes were involved then I would have to have radiation. So try not to stress too much about lymph nodes.

Keep posting, researching, and being your best advocate. We’re here for you! The waiting is horrible!!!


Dx 8/31/2018, IDC, Right, 1cm, Stage IA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 11/5/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 1/30/2019 AC + T (Taxol)
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Jan 8, 2019 09:27PM - edited Jan 9, 2019 10:18PM by justme1964

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Jan 9, 2019 12:18AM Mncteach wrote:

I know it’s frustrating! Unfortunately this is not a quick evolution. I was 2.5 months post diagnosis when I finally had my surgery, after many tests, a scare and an additional biopsy. I will be exactly 5 months post dx when I finally start chemo. Then there is the time for the treatment. Someone once said that a cancer dx will take a year of your life. If you count worry, I’m sure it’s much longer than that!


Dx 8/31/2018, IDC, Right, 1cm, Stage IA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 11/5/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 1/30/2019 AC + T (Taxol)
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Jan 9, 2019 02:21AM - edited Jan 9, 2019 03:23AM by AliceBastable

I was told I would have a drain after surgery, but then didn't get one. I think they really don't know for sure until they've got you opened up. The micromet was a surprise all around, and since I needed a re-excision due to a close margin, the plan was to put a port in at the same time. My oncotype score came back the day before, and at 17, I didn't need chemo after all. Remember, it's not like a bone where they can see all the edges and details on the X-RAYS and scans. We're talking squishy tissue here.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jan 9, 2019 06:56PM justme1964 wrote:

Ok, tomorrow I go for my post-op visit. I really have nothing to say to this doc. Just wondering if there are any specific questions I should be asking.

I only what to hear the treatment plan, the drain to be remove and not the results. Sorry trust issue here big time..

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Jan 9, 2019 08:50PM Mncteach wrote:

Have you made your second opinion appointments?

I would find out results and see what next steps the doctor wants to take so you can hear that viewpoint vs what you hear at the second opinion. Ask why they doctor thinks this is the best option?

Dx 8/31/2018, IDC, Right, 1cm, Stage IA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 11/5/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 1/30/2019 AC + T (Taxol)
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Jan 9, 2019 08:55PM justme1964 wrote:

can't make second opinion until I go for my post op appointment.

Frankly, I am scared out of my mind about the results since she felt 2 palpable nodes and if 3 out of 4 are positive more surgery. Plus she had to dig deeper to get whatever, which resulted in this drain, who knows how bad it really is. Yeah I know, that is why I am getting the second opinion.

I am going to get the second opinion then compare..


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Jan 10, 2019 12:28AM Salamandra wrote:

At my post op, the nurse practitioner checked my scars to see that everything was healing properly, and went over with me the results of the pathology, briefly, and got my consent to send for the oncotype test.

She didn't really discuss what would come, because it was the surgical oncologist's office doing the post-op, and it would be the medical oncologist and the radiation oncologist making the next set of decisions/recommendations. She referred me to those people and her office set up those appointments for me.

It would be a good time to ask more questions about every part of the pathology report that you want more info about. Some they'll probably be able to answer better, and some the medical oncologist will. It's also a great time to ask any questions about physical or cosmetic recovery from the surgery. At my center, it is the surgeon who manages follow-up surveillance. If it's the same for you, you can make sure you understand what they recommend in terms fo timing and frequency of future imaging/exams and follow up appointments.

I hope it goes all right! Keep us posted.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 10, 2019 01:12PM justme1964 wrote:

Thanks,

Yeah, seems like me and the surgeon are not seeing eye to eye. I have to go to my post-op to get the tube out and checked. I already talked to her last night saying I don't want to know the pathology. Because now I am finding out that once surgery is done, I will have very little interaction with surgeon. I do feel at this point. I am willing to stick with her and her team at this point. But I am still getting second/third opinions.

From what you said and someone else I talked to, I am better off talking to radiation & medical oncologist because that is their specialties and they will be the ones mapping out my plan.

Again, still freaking out about the results. Because I don't believe what the surgeron initial stated.

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Jan 10, 2019 04:01PM Mncteach wrote:

Yes the medical oncologist and radiation oncologists are the ones who make the plan. Make sure you have a copy of the pathology report though so you can use it in the future. Eventually you are going to have to know your pathology as it will dictate the next steps. I am just one of those people who wants to have all the information so I can research it before meeting with doctors so I understand more of what they are saying and can ask knowledgeable questions. I wish you the best with today's appointment.

Dx 8/31/2018, IDC, Right, 1cm, Stage IA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 11/5/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 1/30/2019 AC + T (Taxol)
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Jan 10, 2019 04:18PM justme1964 wrote:

If I decide to stay with this group, which most likely i will, the doctor can send a copy to the group. I do have copies of everything from the initial clinical appointment and why bother keeping it.. just stresses me out, all I did was read it, did research, freaked out, to come to find out that most of the information is not correct.

If I need a copy I will get it but I don't want to see or hear anything but what my treatment plan is and get this done with.

The surgeon told me that most women ask ok when will I be cancer free, she told me that right after the lumpectomy that it is all gone, come to find out that might not be true. I just have to learn not to take to heart what the surgeon tells me. Again finding out surgeon does the surgery the rest work on the treatment plan.

In my lifetime I never thought I would be going through this and have no clue what is what.

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Jan 10, 2019 04:37PM Jenkins00 wrote:

justme1964 - Its hard not to be stressed and wanting to find out as much information. I did the same but learned it will not help. I have all of my reports which I looked at once then put it away. I think once you have a plan in place it will get better. Getting second opinions do help. I talked with my husband's oncologist while at an appointment and he reassured me. You will get through this. We are here for you.

Dx 8/2/2018, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/27/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right Chemotherapy 1/14/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jan 10, 2019 05:19PM justme1964 wrote:

Thanks.. I still don't want to know.. with me the less I know the better... I just want my treatment plan and be done with it and move on. I don't want this to consume my life, get my treatment started and done with and move on. I think I might feel better when this drain is out because it is a 24/7 reminder of what is going on..... with it out I can focus on other things in my life.....

Just seems when I go for tests, get the results, then to come to find out it change after pathology scares me. especially with the lymph node thing.....

The doc mentioned as of yesterday she did not have the results and not sure for today. I am not sure either from what I hear it can take 7 - 10 days and today is only 6 days from surgery.

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Jan 10, 2019 08:12PM - edited Jan 10, 2019 08:13PM by Salamandra

justme1964,

I think that's a great thing to know about yourself and a completely fair plan! I think you will feel a lot better once you have doctors that you have confidence in telling you the plan and explaining your situation in a consistent way.

I agree that removing the drain will help. I had to wear a veronique for a while after surgery because of a seratoma that didn't want to go down, and I really really hated the reminder. I hope you can get rid of it soon!

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 10, 2019 08:46PM Mncteach wrote:

Hope your appointment went well! I hope that your team gets a treatment plan quickly for you.

Dx 8/31/2018, IDC, Right, 1cm, Stage IA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 11/5/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 1/30/2019 AC + T (Taxol)
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Jan 10, 2019 09:25PM NoWhyToIt wrote:

Justme1964,


Hi I just wanted to say hi! I am five years from diagnosis, I had a lot of lymph nodes positive, Stage 3 and Grade 3 and I am still here and doing well. So even if you hear news that is scary, try to remember this story and think positively. You'll get through it. The key is to believe in your team, so you definitely want to make sure you feel good about them.


Take care

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Jan 10, 2019 11:43PM justme1964 wrote:

well got an update, 5 positive lymph nodes, did not qualify for the oncotype test.. she is going to order a scan. then more lymph nodes to be removed and so far, she says chemo and radiation. Just trying not to freak about it spreading any further... she said worse case scenario if it did, it is not curable but totally treatable and I can and will still live a long life with taking pills because of my ER/PR + and HER2 -

I am going to get a second opinion. because I just want to make sure I am getting the right treatment. don't want to jump into an unnecessary surgery.

Oh based on the pathology, with the new staging i am considered Stage 1B..

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Jan 11, 2019 12:13AM Mncteach wrote:

So glad you are getting the second opinion. Do you have a breast health navigator? They should be able to speed things up and help during this difficult time.

Dx 8/31/2018, IDC, Right, 1cm, Stage IA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 11/5/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 1/30/2019 AC + T (Taxol)
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Jan 11, 2019 12:18AM NoWhyToIt wrote:

Justme1964,

There are so many treatments now that no matter the diagnosis there are many options. Getting a second opinion is important, I think, if your gut tells you you want one. A side note, I had a similar diagnosis and 5 positive lymph nodes would not be Stage 1B so I would check with your doctor if it's important for you to know the staging. To be honest, it actually doesn't matter in some ways. If you are considered early stage BC at this point, the stages don't matter except for treatment plan---whether to have chemo or not, essentially. The most important thing is for you to be comfortable with your team and start treatment quickly. If you are worried about spread beyond the nodes I would recommend you ask your doctor for a Pet scan.

In your corner,

nowhytoit

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Jan 11, 2019 01:58AM - edited Jan 11, 2019 02:08AM by justme1964

Yes. I do... the doc is working on the pet scan for next week.

As for my staging, a little confused on that, but I am working as quickly as i can for second opinons to get the right treatment.

Of course, I am trying to not think the worse. but with this group and talking to other, this is not a death sentence. just need to get the right team and treatment. I will not get any surgeries until all my second opinions come back saying I need it. then consider who will I go with. I heard great things about Sloan and if that is the right fit for me, that is where I will go.

I believe I am moving as fast as I can, noticed something wrong beginning of nov 18 and lumpectomy was last week.

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Jan 11, 2019 04:07AM edwards750 wrote:

I was Stage 1b with just a micromet in the SN. I qualified for the Oncotype test and my score was 11. No chemo. Lumpectomy and 33 radiation treatments. 5 years on Tamoxifen. 7 years out last August.

I don’t think you can be a Stage 1b either with 5 positive lymph nodes. I would get a second opinion.

Diane

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Jan 11, 2019 11:31AM - edited Jan 11, 2019 01:14PM by justme1964

I am second opinion, because I really don't rely on what the doctor said to me today. Especially after the surgery she said she only felt two palpable nodes where she said it was actually for but she didn't want to tell me that because I was so fixated on the two.

And I still don't understand why she won't let me talk to an an oncologist

Okay I'm looking at the notes as she gave me pathological staging is a 3A but the prognostication stage is 1B. my clinical staging as 2A.. How freaking no clue what that means.

I want to know if I qualify for the oncotype test and do I really need the pet scan. Hey if I have to do chemo then fine, but don't want to go through something I really don't need.


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Jan 11, 2019 05:32PM JoE777 wrote:

Can anyone explain to me why someone doesn't qualify for oncoDx test? Is it because of Stage and grade?

Dx 2/2012, IDC, Left, 2cm, Stage IIA, metastasized to bone, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/3/2012 Lumpectomy: Left; Lymph node removal: Sentinel Dx 2/2018, IDC, Stage IV, metastasized to bone/lungs, Grade 1, ER+/PR+, HER2- Targeted Therapy Kisqali Hormonal Therapy Femara (letrozole) Chemotherapy Other Radiation Therapy External: Bone Hormonal Therapy Aromasin (exemestane), Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes
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Jan 11, 2019 05:52PM DebAL wrote:

joE, yes, stage, hormone receptor status, how many lymph nodes etc factor in. I believe there is a quiz on the oncotype site where you plug in info and it gives you an idea. Sorry I'm not much help! Hope you are doing well.

Dx 1/22/2018, IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR-, HER2- (IHC) Surgery 2/12/2018 Mastectomy: Left, Right Surgery 2/12/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/2/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 6/14/2018 Arimidex (anastrozole) Surgery 8/9/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/20/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery
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Jan 11, 2019 06:50PM JoE777 wrote:

Deb, your info answered my question. Thank. Jo

Dx 2/2012, IDC, Left, 2cm, Stage IIA, metastasized to bone, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/3/2012 Lumpectomy: Left; Lymph node removal: Sentinel Dx 2/2018, IDC, Stage IV, metastasized to bone/lungs, Grade 1, ER+/PR+, HER2- Targeted Therapy Kisqali Hormonal Therapy Femara (letrozole) Chemotherapy Other Radiation Therapy External: Bone Hormonal Therapy Aromasin (exemestane), Femara (letrozole) Radiation Therapy Whole-breast: Breast, Lymph nodes

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