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Topic: New Here and Just Diagnosed

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

Posted on: Dec 13, 2018 11:34AM - edited Jan 9, 2019 04:20PM by justme1964

justme1964 wrote:

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Dec 13, 2018 11:51AM DeeBB wrote:

Welcome and so sorry you have to be here. I think it's completely normal to be scared. I was diagnosed 09/19, lumpectomy was 10/16 and Sentinel lymph node biopsy. My lymph nodes came back negative and I am currently doing radiation every day. Today was number 9 session of 20. I was a wreck as well waiting for the results. Just try and take it one day at a time, I know it's a lot. Keeping busy and talking to friends and family helped me quite a bit and maybe a glass or two of wine as well. Try to stay positive and I will keep you in my thoughts and cross my fingers for negative lymph nodes.

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Dec 13, 2018 12:06PM Dani444 wrote:

I am sorry for your diagnosis, but glad you were diligent with following up on your breast changes. I had a bit of a wait for my surgery due to them trying to figure out how big my tumor was. Has your doctor discussed getting the Oncotype or mammaprint test? I ended up with positive nodes but I was able to skip chemo due to being low risk on the mammoprint. I am now doing radiation for the positive nodes. My MO ordered the test with the tissue from my initial biopsy so I had the results soon. I am glad you are comfortable with your team, that makes a huge difference. I was nervous about radiation, but so far so good. My appointments go quickly and I see the RO weekly to stay on top of any potential skin issues. If you can put your stats in your signature. I have found this forum to be a huge help in learning about my cancer. Best of luck with your surgery

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/24/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 13, 2018 12:43PM claireinaz wrote:

Hi and welcome...take heart that you are er/pr +, meaning you have more options to treat and eradicate it--there seems to be a bit better prognosis for hormone positive status, so that's a good thing for you to hold onto. There is such good advice here on these boards--so keep doing research and posting when you need to, both questions and worries. The first thing I did here was to read only inspiring survivor stories about women who had worse dxes than I did-it helped a lot. Positive lymph nodes don't actually mean that it's doom and gloom--someone else told me early in my dx that they are actually catching any cancer cells before they go on to make problems, sort of like a first line of defense. And you might not have any at all, too.

Keep us posted. We care.

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Dec 13, 2018 12:46PM justme1964 wrote:

what is a mammoprint? Again, new at this and just not sure what is what. meaning what to ask my doc, what to expect, and what got me is when she said lymph nodes. Doc did say so far it is a less aggressive and I am hoping that means there is a low chance of it going in the lymph nodes and spreading throughout my body.

I am glad i found a place that I can chat with others. i am not big on going to support groups..


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Dec 13, 2018 01:00PM - edited Dec 13, 2018 01:02PM by Dani444

Here is a link to some info on the mammaprint test. Some doctors order the oncotype test. There is info in this article about that as well.


Mammaprint info link

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/24/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 13, 2018 01:18PM Mystic18 wrote:

I am not a fan of in person support groups either so this website has been awesome. Like you, I was also just diagnosed. The Oncotype is a series of genetic testing - I just gave blood for that on Tuesday. I've only known about this for one week but I feel like my head is spinning. It feels like I'm talking about someone else but daily it's registering a little more that this is my diagnosis. You can do this. WE can do this.

Like you, I am also limiting my wine intake. Read some horrific articles about wine bonding to hormone positive breast cancers so will stick with sparkling water for now. Sending you love from Pennsylvania. We got this, girly.

Dx 12/5/2018, IDC, Left, 1cm, Stage IB, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 1/9/2019 Mastectomy: Left, Right Hormonal Therapy 2/14/2019
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Dec 13, 2018 01:24PM Salamandra wrote:

Things that I wish I'd known sooner than I did:

They don't really know the stage until after surgery and pathology - they're making informed guesses.

Your stage can go down based on pathology. I was freaked out waiting. Knowing that I think might have helped. What is the estimated size of your tumor? Even if it's larger, if there is no node involvement and your oncotype/mammaprint score comes back low, your stage could still be 1a.

No matter what your grade is, you never know if you're 'cured' until it either comes back or you die of something different. Most women die of something different.

The treatment is a slog and you really can't know what side effects you'll have except by trying the treatments. It's easy to get freaked out because people with bad experiences are more likely to post. But a lot of women either have minimal or very treatable side effects.

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 10/17/2018 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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Dec 13, 2018 01:49PM AliceBastable wrote:

I thought the oncotype was run after surgery on the tumor sample. Mine was, and everyone I've read about. I had a trace of cancer in the sentinal node, but with a score of 17, I did not need chemo. I don't think the oncotype has anything to do with genetics; it's more a risk assessment for ER+/PR+/HER- cancers - and might include a few other types - to determine if chemo would be a benefit.

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 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Dec 13, 2018 02:21PM - edited Dec 13, 2018 02:21PM by Polly413

justme1964 - Sorry you are going through this. Don't get hung up on the lymph node issue. .My mammogram showed calcifications in a cluster that measured less than 1 centimeter and neither breast lesion nor lymph node cancer could be detected by clinical exam. The biopsy showed hormone positive and HER2 neg. and grade 2. My surgeon also urged the sentinel node biopsy at the time of the lumpectomy. It showed one lymph node to be positive. She was surprised since my lesion was so small and I was not high grade. This made me Stage IIA. But chemo was not a given even with the lymph node positive. My oncologist used the Mammoprint test which is done with tissue from the lumpectomy (not by a blood test). Because it came by "high risk", I did do chemo. But if it had come back "low risk" I would not have done chemo even with the positive lymph node. Cancer does not have to go through the lymph node to spread . It travels though the blood system also. So just being lymph node negative does not mean you don't need chemo. It is complicated and we are so lucky now to have Mammoprint and Oncotype tests to help see who really benefits from chemo. Best wishes for a good result as you go forward. Polly

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Dec 13, 2018 02:54PM justme1964 wrote:

Thanks, looking at the information the doctor gave me, she will be running tests like this.

So, now these test will determine what type of treatment I should be getting.

I am feeling a lot better chatting with this group.  I personally have not told a lot of people.  I want to find out exactly what is what before telling everyone.  no sense in worrying folks until I know what is what.


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Dec 13, 2018 03:34PM Polly413 wrote:

As far as the tests determining treatment, that is so up to a point. The gold standard is radiation when a lumpectomy is done. The tests would not change that. Also for hormone positive it would be "usual" for hormone therapy to be prescribed. Others can chime in here but my understanding is that even if the tests show "low risk", that finding is dependent on the patient having hormone therapy. I am not sure how many patients who are Stage II and Grade 2 have the test come back recommending chemo. Way less than 50% I would think. I had an unusual finding on my mammoprint report that my tumor was more Basal than Luminol which is very rare for estrogen positive cancers. So don't worry based on my need for chemo -- I would think your changes of no chemo are high. Polly

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Dec 13, 2018 06:56PM Dani444 wrote:

Great point Polly, I That is how I understand it as well. That it is measuring how effective chemo would be in addition to your hormone therapy.


DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/24/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 14, 2018 08:11AM justme1964 wrote:

Thanks, I am starting to get a better understanding which is helping me not to freak out.

Yes, the doctor explain things to me but so much information just did not understand. Just overwhelming...

Can't wait to get the surgery done, find out the treatment, and get this taken care of....

I am more nervous about the treatment then the surgery. Hey whatever treatment will be, will be and go forward.



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Dec 14, 2018 08:35AM Ingerp wrote:

I also wanted to throw in that if your doctor doesn't think there will be anything in the lymph node, that'll probably be the case. They can tell a lot with an ultrasound and you definitely want it confirmed in surgery but I think they usually know what they're looking at. Try not to worry about it.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Dec 14, 2018 09:39AM justme1964 wrote:

The ultrasound did not show anything nor did the doc feel anything in the lymph nodes. She did say she is checking to make sure that no cells are hanging out in there.

She will be removing at least 1 maybe 2 nodes to biopsy. Just when she mentioned this, it threw me off, I had no idea what to expect.

Then she mentioned about it could spread via the lymph nodes...

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Dec 14, 2018 09:49AM claireinaz wrote:

Hi there, when you visit your doc, either take someone with you that you trust to take notes, or take notes on your own and ask them to slow down if you need them to as you write, or talk to you in a way you can understand. Ask them how to spell terms, etc. We are our own best health advocates, and no one cares more about our health than we do.

Docs are there for you--you hired them to care for you and get you well--so remember, you're the contractor and they are your staff, so to speak. You can share what they told you at each appt with us, and that will help us help you even more.

I understand your need for privacy; I didn't want people asking all kinds of questions that might make me worry or tell me horror stories, either. Chemo wasn't a walk in the park but it was doable and I didn't have any lasting effects from it. Radiation after chemo was actually so much better than chemo that I kind of embraced it, even though 5x a week for 6 weeks was a bit tedious. After the initial set up appt, the rads only took about 15 min or less.

Previous post about most people post that have bad experiences--it's true. We are looking for validation and information that our side effects and problems are also shared by others. Most women who have okay experiences don't need that, because we're feeling okay.

I had it all: lumpectomy, chemo, rads, BMX and reconstruction, and anti hormone drugs. I'm doing okay so far.

Hugs

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Dec 14, 2018 01:16PM - edited Dec 14, 2018 01:17PM by Calliope42

Hi all - newly diagnosed with Breast Cancer (grade III and tumor sized at 1.9mm) and feeling pretty positive (still)...

I received the definitive news 10 days ago and haven't returned to work since. My employer has been really good about it and waiting to hear back from me. I am waiting on my surgery date. As the days move to weeks, I am wondering if I should return to work while waiting for surgery? I am trying to plan financially and don't want to go into short term disability/leave (68% of salary).

I saw based on some profiles here, that from diagnosis to surgery took sometimes upwards of one month. Although most of you are in the US (I am in Canada), I am wondering how some of you managed the working part? I am a single mom and it will be a struggle (although probably feasible but stressful) having a reduced salary. What did you do?

Pending right simple mastectomy, requested removal of both implants. Dx 12/4/2018, IDC, Right, <1cm, Grade 3 Surgery
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Dec 14, 2018 03:34PM Moderators wrote:

Dear Calliope42,

Welcome to the BCO community. We are sorry for your diagnosis but glad that you reached out to our members. Please let us know if you need any help navigating your way around the boards. We are here to help you to get connected and stay active. We hope that you find the support and information that will be meaningful to you. The MOds

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Dec 15, 2018 10:10AM claireinaz wrote:

I don't have an 8-5 job; I teach at a state university and my schedule worked out that I wasn't teaching on Fridays. So I had my infusion then, and took the weekend to recover. For my AC infusion I never missed a class I had to teach. It actually helped me get my mind off my worry because I have to be so invested in what is happening with my students when I'm in the classroom.

I also used my sick time I had built up when I had my weekly infusion of taxol, and reduced my full teaching schedule to 1/3 for one semester. Since I worked out that I would teach that reduced schedule in the mornings on T/Th, I was able to get my infusions on Fridays.

When I had rads, since I was teaching in the a.m. I just scheduled the appts in the afternoons and then drove home.

It was doable for me because I work mostly from home when not on campus. Does your work have a sick time donation opportunity? I found a lot of my colleagues wanted to donate sick and vacation time to me to help out, but because we are a state-run institution, it couldn't be done.

I'm thinking depending on what your tx plan is, you could try to schedule any chemo (if you wind up with it) on Fridays and use the weekend to recover, as I did.

I found my surgeries (lumpectomy, BMX) fairly easy, and went to work for both. I had a drain in for my lumpectomy and just tucked it in my waistband. No one knew.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Dec 15, 2018 10:12AM justme1964 wrote:

all this information is helpful.

Still concerned about it spreading beyond the lymph nodes. I don't think I need to worry.. but that is the only concern I have at this point.

I will embrass the appropriate treatment to get better.

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Dec 15, 2018 10:54AM bluepearl wrote:

Lymph nodes are always checked, no matter size, stage or grade. It is part of the plan. So far, your stats are good. We are always concerned about cancer spreading beyond the lymph nodes....I am 8 and 6 years out and still think about it. I am glad you are embracing the treatment plan you get and I wish you well.

Dx 1/6/2011, IDC, 1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 2/11/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Dx 2/2013, IDC, <1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 3/9/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 3/17/2013
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Dec 15, 2018 03:14PM L-O-R-I wrote:

Hi Calliope42,

I'm from Canada too and know that there is a limit to the time off that you can take off without penalty.  I'm sure that you can go back to work before your surgery and if your job isn't strenuous, you probably won't have to take off much time after surgery either.  Depending on the treatment you decide on doing, you may need to use your sick time down the road.  You are probably off because you are upset and not because you aren't well enough to go to work.

 I get every Thursday and Friday off so I booked my appointments on those days and also made sure my surgery/lumpectomy was on a Thursday so that I could be back to work on that Saturday, since my job doesn't entail lifting or strenuous labour.  Time does fly by, even though it is probably going in slow motion for you right now.  Best of luck in your journey!  I know being a single mom is hard enough, so I'm glad you came here for some support.

Lori

Philippians 4:13 Surgery 4/19/2018 Lumpectomy: Right Dx 4/21/2018, DCIS/IDC/IDC: Cribriform, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- (IHC)
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Dec 16, 2018 12:50AM Calliope42 wrote:

Thanks L-O-R-I - My doctor had told me that I would probably be rushed into surgery within 1-2 weeks, and yes I suppose I was in shock, so didn't go back to work. But now that it's been 2 weeks, I've decided to go back starting Monday.

It helps to know that you were able to schedule everything around work. I still don't know the stage or what therapy I will decide on post surgery but my employer has been ever so accommodating and let me take those 2 weeks as paid leave.

It's a touch challenging as a single mom and even off work, I've been so busy doing research and juicing and making smoothies and dosing on CBD and supplements and researching, in between laundry and feeding kids and helping with homework! Not sure how I'll manage it all with work thrown back in, but it's how I roll, so I'll manage.

Fingers crossed I get scheduled in for surgery soon so I can figure out next steps!

Pending right simple mastectomy, requested removal of both implants. Dx 12/4/2018, IDC, Right, <1cm, Grade 3 Surgery
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Dec 16, 2018 07:10AM dtad wrote:

justtime1964....so sorry you have to be here but welcome. We all know how overwhelming the beginning of this journey is. IMO you should insist on a MRI before making any treatment decisions. You didn't mention how big your tumor is but try to remember they have to prove you have BC before you do! As far as your lymph nodes are concerned, unfortunately you just have to wait for the surgical report. We all have gone through this and we know it's hard. Good luck and keep us posted.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Dec 16, 2018 11:24AM beach2beach wrote:

Sorry you are here, but welcome. Can't add more to what everyone has said, and as you can tell, so many of us have gone through it already or are in treatment now. You sound ready to fight and that's great. I felt the same. Wanted it out as soon as possible and move on with whatever lied ahead.

You will get through this. Keep us in the loop. We are here.. Hugs..

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/11/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 17, 2018 03:52PM - edited Dec 17, 2018 04:02PM by justme1964

my tumor is about 2.1cm...  doc did say the size of the tumor can be less after being removed.  

as for MRI, doc did mention for putting the wire in before surgery, but I can't do MRI, because I am claustrophobic, told her that I would take any medicine to relax me to get that done.. but she said she will do an mammogram for that.

as for the lymph nodes, I did look at the doctors notes when I was not freaking and she used something called nomogram from MD Anderson and based on that I have 82% chance not having anything in the lymph nodes.  She even said that there is a low chance that they are not affect, but can't say for 100% until after surgery.  just nervous about it spreading throughout the body and being worse then what it is...

As for treatment, no question in my mind I want the lumpectomy to remove as soon as possible it then radiation and be done with it..  I don't want to wait and second opinions will only delay treatment.  if it was up to me, I would have had the surgery already.. last week, but not enough time, I could have had it this week, but doc say, why not wait until after xmas 2 weeks will not make a difference.... so we agreed on 12/28/18

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Dec 17, 2018 05:18PM windingshores wrote:

If you have an Oncotype test, it will give you your risk % with and without chemo and other information on your prognosis. (This is different from genetic tests for BRCA and other genetic tendencies for breast cancer).

At the time of my diagnosis, Oncotype was the standard of care but those with intermediate scores would sometimes have the Mammaprint which only has high and low risk.

You really don't have much information until after the surgery. It is hard to wait. Some of us have gotten Ativan from our doctors to get us through. Walking, Netflix, Tai Chi whatever works for you :)


Dx 2/2015, DCIS/ILC/IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery Lymph node removal; Mastectomy: Right Surgery Mastectomy: Left; Prophylactic mastectomy: Left Hormonal Therapy
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Jan 7, 2019 02:07PM justme1964 wrote:

Ok. went for my lumpectomy. talk about stress up to that date. needed to reschedule because I was sick; therefore, I had to do the dye injection again. Talk about doing everything twice.

Well, I totally freaked when I woke up and to find a drain pump put in me. At first doc said no, but she stated that she had to go deeper to get to the tumor. It is hard to keep my mind off of things until I get the results of this with something hanging off me.

Doc took out 4 nodes, 2 felt fine but 2 were palpable. Ok what does palpable mean??? Does that mean cancer went into the nodes???? I am just confused and worried because of course the doc state don't put the horse in front of the cart... but with my hormone receptors being positive and HER2 negative if I have positive lymph nodes, does that automatically mean chemo????

I am so confused because the doc is telling me how they are changing the staging from about 2 years ago.. if stated if positive nodes and new staging I will still be stage I/II and she will need to do more surgery to remove more lymph nodes.

maybe and insight that might help me understand all this would be great.

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Jan 7, 2019 02:39PM edwards750 wrote:

just me -I would have freaked out too if I woke up with a drain pump and wasn’t aware a drain pump might be required.

You have legitimate questions that need to be addressed to and answered by your doctor.

I had a micromet in my SN. My BS said it would get me chemo. He even went so far as to schedule a port when I had surgery. My MO who was the decision maker for my treatment said she wanted me to have the Oncotype test to see if chemo would be beneficial. Just so you know she also said women had been over treated for years so the Oncotype test would provide specific information about my tumor. My score came back low at 11. No chemo. 33 radiation treatments. 8% chance of a recurrence. Btw they did not test any other lymph nodes. My MO said it wasn’t necessary. In your case your MO thinks you need to have more nodes removed.

One thing we have all learned being DX with this disease is be your own advocate. I can’t tell you how many women I know who have done just that despite their doctor’s advice. They did their homework plus it’s their bodies. Their lives too just as it is yours.

Your medical team needs to address your concerns before proceeding. Make sure they do that.

Diane



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Jan 7, 2019 03:32PM letsgogolf wrote:

I also had a 2 micromets in my first node of 8 taken. Oncotype was 3 and so I did not have chemo. Best wishes!

Oncotype DX = 3. IDC with Lobular Features. Sentinel Node had Micrometastases - Estrogen 100%, Progesterone 99.89%, Ki67= 3.3% Dx 2/14/2017, IDC, Left, 1cm, Stage IB, Grade 1, 0/8 nodes, ER+/PR+, HER2- Surgery 2/27/2017 Lumpectomy: Left Radiation Therapy 4/6/2017 Whole-breast: Lymph nodes Hormonal Therapy 6/1/2017 Arimidex (anastrozole) Targeted Therapy

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