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Topic: Stage 1 node-negative, now "high risk" because of Oncotype?

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

Posted on: Dec 23, 2011 04:55PM, edited Dec 23, 2011 04:57PM by NancyHB

NancyHB wrote:

The last couple of weeks have been such a whirlwind, and I'm hoping someone has some insight or advice or even just thoughts and ideas - anything will be helpful right about now!

Two weeks ago, after my lumpectomy and SNB which revealed clear margins and no node involvement, that radiation would be my course of treatment.  Last week, the hematology oncologist wanted to see me; said my "young" age (48) and 1.3 cm lesion made me an excellent candidate for 4 to 6 rounds of Taxotere and Cytoxan. Yesterday, the onco called with the results of my Oncotype test, which at 42 correlates to a 28% recurrence rate.  She said I'm now considered "high risk."  Suddenly my treatment plan has changed to 4 x AC, then 12 Taxol (if I join a clinical trial, I would get the same amount of Taxol, but every-other week for 6 treatments.  Not sure about that yet).

Has anyone else seen their treatment plan change so dramatically after receiving the Oncotype score?  I can't decide if my original treatment plan was a, "Well, let's do a little chemo to just make sure there's nothing floating around in there," to "You've got such a huge chance of recurrence we want to throw the kitchen sink at it."  My Oncotype score qualifies me for this wonderful NCI trial, so my biggest fear is that they're upping my treatment to coincide with the clinical trial requirements.

I will talk more with my onco next week after the holidays, but until then I'm hoping for some input/ideas to mull over until I see her, so I can formulate good solid questions.

Thank you!

Nancy

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Dec 23, 2011 05:16PM voraciousreader wrote:

Nancy.... You are exactly the type of patient the Oncotype Dx test was designed for. Before the test, doctors knew they were over treating many ER+ women with chemo. They just didn't know who needed chemo and who didn't. While many women are now spared chemo, thanks to the Oncotype Dx test, many other women benefit because their high score confirms the need for more aggressive treatment. The good news is that you have early stage disease and will get your risk of recurrence way, way down. Good luck!

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 2/10 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% PR+ 70% HER2- (+1)

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Dec 23, 2011 05:20PM ppplocke wrote:

Hi there. The Oncotype is used for patients exactly like you. It is intended to help make a chemo decision for node negative hormone fueled cancer. The fact that your score is so high means you should treat this more aggressively than initially thought. The good news is you likely have all of the puzzle pieces now and can figure out a wonderful plan tailored to your specific situation. Good luck!

BMX 9/21/2010 withTE at 39 -- Oncotype 8 -- BRCA Neg -- TAC 6 rounds -- 36 rads -- Total Hysterectomy -- Exchange Surgery -- Finished! -- Worry does not change tomorrow, it only ruins today!

Dx 9/1/2010, 1cm, Stage IIb, Grade 2, 5/15 nodes, ER+/PR+, HER2-
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Dec 23, 2011 05:25PM profbee wrote:

Hey Nancy.  DItto the above, but I also just wanted to say that you are still a Stage 1a.  You've found out about this early, and you're hitting it now.  I was comforted by all the treatment now thinking that it may save me from recurrence later...of course, that's not a guarantee, but it made me feel better about it.  

I'm sorry that you'll have to endure chemo now, but it's much better these days than the made-for-tv-movie stories of the past.  And, there's a great community here to support you through it.  Hang in there.  I hope you get to enjoy the holidays some! 

Dx 3/2011 at 38 yrs old. 16 weeks of Taxol/Lapatinib 4/2011-8/2011, BMX with TEs 8/23/2011, 4 rounds of AC ended 11/10/11, Tamoxifin started 11/25/11, Herceptin starting 11/28/11, exchange surgery on 12/19/11.

Dx 3/1/2011, IDC, 2cm, Stage II, Grade 3, ER+/PR-, HER2+
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Dec 23, 2011 08:19PM otter wrote:

Nancy, you asked:  "Has anyone else seen their treatment plan change so dramatically after receiving the Oncotype score?"

Yes, absolutely, as everyone here has said.

When I met with my breast surgeon and medical oncologist shortly after my surgery (left mast/SNB), both were happy that my tumor was less than 2 cm, the grade was 2 ("not 3"), the tumor had estrogen receptors (ER+) but was HER2 negative, and my nodes were negative.  The surgeon was forecasting that I would not need chemo at all -- I would go directly on to an aromatase inhibitor to suppress estrogen synthesis. 

The med onco wasn't quite as confident.  He said having an ER+ tumor was a good thing because ER+ tumors were less aggressive and less likely to recur than tumors that lacked estrogen receptors.  As a result, he said, many women in my situation did not need chemo.  But, he said, it was hard to tell whether a particular ER+ tumor was going to recur or whether chemo would be helpful against an ER+ tumor, without more information.  So, he said, we're going to order an Oncotype DX test.

My Oncotype DX score ended up being 26, which translated to a 17% likelihood of metastatic BC within the next 10 years (more about that in a minute).  That was way too high for me, or for my cancer docs; so I had 4 rounds of Taxotere & Cytoxan.  (Six rounds was not the norm back then.)

In other words, I went from "probably no chemo" to "chemo is highly recommended" on the basis of my Oncotype score.  Apparently, dramatic changes in treatment recommendations based on the Oncotype result are not unusual.

It's important to realize that the Oncotype score doesn't just estimate the "recurrence risk."  It predicts the likelihood that a woman will develop "distant recurrence" in the next 10 years.  A "distant recurrence" means metastatic breast cancer.  That's serious stuff.  Once a tumor metastasizes, we can't put the genie back in the bottle.

According to the company that runs the test (Genomic Health), Oncotype DX scores of 18 or lower represent a "low risk" of distant recurrence.  Scores from 19 to 30 represent "intermediate risk"; and scores of 31 or higher are designated "high risk."  Here's more information about the test, from the company's website:  http://www.oncotypedx.com/en-US/Breast.aspx

So, yes, it really sux, but your Oncotype score is high enough to put you in the "high risk" category.  The good news is that the higher the Oncotype score, the greater the likelihood that chemo will have a significant impact on the outcome.

otter

Dx IDC, Stage I, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Dec 23, 2011 08:39PM misswim wrote:

Nancy, you and I are almost exactly like. After my MX, I had a 1.3 cm tumor, clean nodes and LVI. My oncotype came back at a 38. I was totally freaked out. When my onc explained it to me though, and I saw that women who scored in my range had more than a 15% drop in risk after completing first generation chemo, and I was getting ACT, just like you, which is even more effective than the chemo used in the Tailor RX trial. Keep in mind that the test only takes into account hormonal treatment and chemo, and not changes you can make on your own like exercise and dietary changes and supplementation. Remember that you are doing all you can, and while chemo is no fun, it is doable, and it ends! Good luck, and if you need to talk feel free to PM me. Thinking of you!

Dx 4/15/2011, IDC, 2cm, Stage IIa, Grade 3, 0/6 nodes, ER+/PR+, HER2-Chemotherapy 07/09/2011 Adriamycin, Cytoxan, TaxolSurgery 08/07/2012 Prophylactic Ovary Removal (Both)
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Dec 26, 2011 11:53AM edwards750 wrote:

Nancy - I too was one of the candidates for the oncotype test. My cancer went from Stage 1 to 2 after the Path report showed a micromet in a node. My BS said that would probably get me chemo but my oncologist recommended I have the oncotype test done. She said the same thing others have said and that is women are being overtreated so the oncotype test is a good tool for them to use to determine treatment. I was blessed my husband's ins covered the test. For those of you who had the test you know it is really pricey. Anyway my score came back at 11 and it was determined my tumor was non-aggressive and actually smaller than first thought so my treatment plan was 33 rads treatments. I was so relieved. Had my score been in the intermediate range I would have opted for chemo. No choice for me. The oncotype test has been a godsend for patients and oncologists. Nothing is perfect or guaranteed but it is the best we have right now and I am truly grateful for it. By the way my BS was even surprised by my Path report; he was confident there was no cancer in the nodes. Apparently he was wrong. So you never know. I went from never thinking I would have chemo to a possibility or probability pre-oncotype test. Good thing is at least you know what you dealing with.

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Dec 26, 2011 06:51PM NancyHB wrote:

Thank you to everyone who responded to my wild ramblings!  And thank you for your patience.  It is shocking and scary to me how quickly things change around here in Breastlandia; I keep waiting for the tour guide they promised to send me, but I see it hasn't yet arrived.

Your insights are wonderful and so incredibly helpful.  I realize, after the shock wore off, that the Oncotype score doesn't change what IS, it helps me understand what COULD BE.  And I want to be as aggressive as possible, because I would really prefer NOT to go through any of this again.  When I start to wax philosophically, I realize my fear is based on facing my own mortality.  This diagnosis has been the biggest shock of my life, and the outcome/information/diagnosis changes literally every single day.  

Thank you for sharing your stories; they help me understand what all of this means in a way no doctor has been able to explain.  It's not about the numbers or the acronyms; it's about the people, the person, the fear, the disease.  Bless you all on your journeys, and thank you for being an important part of mine.

Nancy

Oncotype Test = 42

Dx 11/22/2011, IDC, 1cm, Stage Ia, Grade 2, 0/7 nodes, ER+/PR-, HER2-Surgery 12/05/2011 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Chemotherapy 01/19/2012 Adriamycin, CytoxanChemotherapy 03/15/2012 TaxolHormonal Therapy 06/07/2012 TamoxifenRadiation Therapy 06/12/2012 ExternalHormonal Therapy 10/19/2012 AromasinHormonal Therapy 12/28/2012 Tamoxifen
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Dec 26, 2011 07:30PM GirlPowerDebbie wrote:

There are so many different stories!

I am ER-/PR+/HER2-, with a 2cm tumor and negative nodes.  My onc questioned the PR+, we did the oncotype test and it came back "Inconclusive".  I have a family BC history - sister is 32 year survivor, her 2nd daughter died 4 years ago.  I told my onc I only want to do this one time so we threw the kitchen sink at it.  I did not have a mastectomy - my surgeon and onc both said it was absolutely not necessary - but tomorrow I have my 6th and last TAC chemo, then a month off, then 5-7 week of rads.  The chemo sucks ASS - the fatigue has been really hard - but it is do-able.  You just put one foot in front of the other and get thru it. 

Dx 6/10/2011, IDC, 2cm, Stage II, Grade 3, 0/2 nodes, ER-/PR+, HER2-
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Dec 26, 2011 07:32PM profbee wrote:

You sound good, Nancy.  Glad you found the great community here.  (Wish you didn't have to be here, but here's a good place if you have to be.)

Dx 3/2011 at 38 yrs old. 16 weeks of Taxol/Lapatinib 4/2011-8/2011, BMX with TEs 8/23/2011, 4 rounds of AC ended 11/10/11, Tamoxifin started 11/25/11, Herceptin starting 11/28/11, exchange surgery on 12/19/11.

Dx 3/1/2011, IDC, 2cm, Stage II, Grade 3, ER+/PR-, HER2+
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Dec 27, 2011 06:40PM DM13 wrote:

I am so glad to find this thread! I was told chemo is recommended, but my tumor was only 1.5... I am getting my test results on January 4th! I have been on the fence, not knowing much about this test and this site has been real helpful!

Thank you all for helping to pave the way through all this crap! :) 

MRI Dx stage 3. 12/8/11 BMX, AND with TE - Lab put me at stage 1 - 2/1/12 Oncotype DX score 16, no chemo. 4/12 Stage 1 LE.

Dx 11/8/2011, IDC, 1cm, Stage Ia, Grade 1, 0/32 nodes, ER+/PR+, HER2-Surgery 12/08/2011 Mastectomy (Both); Lymph Node Removal: Axillary Lymph Node Dissection (Right); Reconstruction: Tissue expander placement (Both)Surgery 01/17/2012 Reconstruction: Tissue expander placement (Right)Hormonal Therapy 02/01/2012 TamoxifenSurgery 04/17/2012 Reconstruction: Tissue expander placement (Right)Surgery 01/30/2013 Reconstruction: Breast implants (permanent) (Both)Surgery 02/06/2013 Reconstruction: Breast implants (permanent) (Left)Surgery 05/21/2013 Reconstruction (Both)
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Dec 27, 2011 08:39PM kira1234 wrote:

DM13 I see you are 1a may I ask why so many nodes were removed? The decision on chemo is based on the size as well as your oncotype test result. The size of you tumor in the past does usually suggest chemo, but that has changed with the new test.

Dx 6/1/2010, ILC, <1cm, Stage Ia, Grade 1, 0/1 nodes, ER+/PR+, HER2-Surgery 07/10/2010 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Radiation Therapy 08/03/2010 InternalHormonal Therapy 10/05/2010 Aromasin
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Dec 27, 2011 08:56PM Myopiawmn wrote:

Otter- my stomach just dropped reading your post. I never put it together that distant recurrance meant mets. I just got my oncotype score back at 47. I had calmed myself down thinking that it just meant the chance of a "normal" recurrance was a bit higher than normally thought. I kind of wish when I had chemo that it was stronger than taxotere and cytoxen. Oh well. What's done is done.....

Oncotype score 47. Diagnosed at 36, still alive and kicking at 38!

Dx 10/14/2009, IDC, 2cm, Stage II, Grade 3, 0/2 nodes, ER+/PR-, HER2-
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Dec 27, 2011 09:11PM NancyHB wrote:

momto2boys:  I'm sorry that you're concerned, I never wanted that to happen to anyone.  We sound so very, very similar. 

I am meeting with my oncologist tomorrow, and my first question is going to be, Did you change my chemo plan because you want me as part of this clinical trial, or because it's what's best for me?  I want to know, to understand, why my chemo regimen has changed so dramatically.  

I want to do what's best for me, and for my future, and if that means a more intense treatment, then I'll do it.  But I want to know why.

So - ask questions.  If you are confused and a bit worried, ask your oncologist about your treatment plan.  Don't hesitate to say, "if I'm high risk, is this going to be enough?"  Maybe there is something Dr. Farber knows that will help you understand what has been planned for you. One of the best resources I have found has been the NCCN "decision tree" for treatment - easy to read, understand, and refer back to.  If you are interested, you can find the physician's guide here:

http://www.nccn.org/professionals/physician_gls/f_guidelines.asp

(you have to register, but don't have to be a professional for it to download).  It may seem a little intimidating, but page 11 starts the decision tree for IDC.  Page 42 talks about adjuvant treatment options.

There is a companion guide for breast cancer patients:

http://www.nccn.org/patients/patient_guidelines/breast/

I'll post the results of my conversation with my doctor after tomorrow's visit.  Hopefully I'll have more answers by then.

And feel free to PM me if you have any other questions.  *hugs* to you as we move through this scary process.

Oncotype Test = 42

Dx 11/22/2011, IDC, 1cm, Stage Ia, Grade 2, 0/7 nodes, ER+/PR-, HER2-Surgery 12/05/2011 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Chemotherapy 01/19/2012 Adriamycin, CytoxanChemotherapy 03/15/2012 TaxolHormonal Therapy 06/07/2012 TamoxifenRadiation Therapy 06/12/2012 ExternalHormonal Therapy 10/19/2012 AromasinHormonal Therapy 12/28/2012 Tamoxifen
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Dec 28, 2011 06:51PM NancyHB wrote:

We met with the oncologist today to discuss (in person rather than by phone) my Oncotype DX score, my change in treatment protocol, and the clinical trial they want me to participate in.

Let me just start by saying that I strongly urged the doctor, the RN, the scheduler, and the clinical trial coordinator to reconsider saying things like, "I've never seen a score that high..."  I don't want to be that special, 'k?  Thanks.

My oncologist assures me that he recommends the change in chemo, regardless of whether I participate in the clinical trial or not.  He says the score of 42 puts me at significantly higher risk of metastatic cancer as well as recurrence.  He also reminded me that I had said during our first meeting that I wanted to do "whatever it took" to beat this, so he feels that this protocol will give me the advantage I need.  We walked away feeling good that we were on the right track.  

I'm scheduled for a bone scan and echo in a little over a week; today they asked for blood tests, an EKG and a chest x-ray.  We ran around the hospital getting things done (it was after 5 and some people had gone home) and at the very last stop the clinical trial coordinator was waiting for me.  She wanted to meet me, talk with me about the trial, answer any questions I had and, well, ask for my signature.  The interesting thing about this trial is that she will be my personal assistant, basically, throughout the entire process.  She will have my test results as quickly as possible AND will relay them to me faster than otherwise (she said she'd call me by 7:00 am tomorrow with the chest x-ray results).  The trial will follow me for 15 years post-chemo, with more frequent check-ups for the first couple of years.  No, there is no compensation to me, so my only benefit is knowing that perhaps I'm helping refine the chemo protocols for high-risk women.

On an interesting side note:  My Oncotype test shows that I am actually PR negative, and just barely ER positive (6.6, with the cut-off being 6.5).  I just missed the mark of being triple negative.

Oncotype Test = 42

Dx 11/22/2011, IDC, 1cm, Stage Ia, Grade 2, 0/7 nodes, ER+/PR-, HER2-Surgery 12/05/2011 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Chemotherapy 01/19/2012 Adriamycin, CytoxanChemotherapy 03/15/2012 TaxolHormonal Therapy 06/07/2012 TamoxifenRadiation Therapy 06/12/2012 ExternalHormonal Therapy 10/19/2012 AromasinHormonal Therapy 12/28/2012 Tamoxifen
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Dec 28, 2011 07:09PM profbee wrote:

Nancy, while I know that hearing a high oncotype score sucks, it sounds like you're being taken care of really well!  I'm happy for you.  They didn't do an oncotype test on me--they said that I was HER2+, so it would definitely be high.  I've taken some silly pleasure in not knowing it.  If it's going to be a high number, why hear it, right?  (LOVED your "I don't want to be that special, 'k!)

So, I proceeded as you are.  Let's do this.  Let's throw everything at it now because you are NOT seeing me back here after we're done this time!   

Dx 3/2011 at 38 yrs old. 16 weeks of Taxol/Lapatinib 4/2011-8/2011, BMX with TEs 8/23/2011, 4 rounds of AC ended 11/10/11, Tamoxifin started 11/25/11, Herceptin starting 11/28/11, exchange surgery on 12/19/11.

Dx 3/1/2011, IDC, 2cm, Stage II, Grade 3, ER+/PR-, HER2+
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Dec 28, 2011 09:10PM NancyHB wrote:

profbee:  Yes, yes, yes!  Thank you for your spirit!  I am struggling greatly right now; the score has given me new reasons to be scared, not just of the here-and-now but of the what-is-to-come.  And now, with chest x-rays and bone scans, what if there is something else lurking out there?  I am always a Positive Polly, but dammit, lately I feel so fatalistic.  This started out as "typical" and "easy" breast cancer - lumpectomy and radiation - and it's turned into what feels like my worst nightmare.  I haven't even started treatment yet, and I am already so tired.

I know much of this is expected - grief is a process that I must experience and explore.  And I know I will beat this, because I will, I must, I have to, I want to! 

My life is forever changed - not simply because of a diagnosis, but because of the wonderful women I am meeting along the way.  Bless you all!

Oncotype Test = 42

Dx 11/22/2011, IDC, 1cm, Stage Ia, Grade 2, 0/7 nodes, ER+/PR-, HER2-Surgery 12/05/2011 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Chemotherapy 01/19/2012 Adriamycin, CytoxanChemotherapy 03/15/2012 TaxolHormonal Therapy 06/07/2012 TamoxifenRadiation Therapy 06/12/2012 ExternalHormonal Therapy 10/19/2012 AromasinHormonal Therapy 12/28/2012 Tamoxifen
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Dec 28, 2011 09:22PM momof3boys wrote:

Hi Nancy
This Oncotype score is a great thing, but a relatively new thing too. Just think of the scores of women that came before us and did not have the benefit of having this test done...many must have been under treated based upon their staging alone.. So, in that respect, it's a very good thing and an extra "tool" to help put all of this BC puzzle together.
We can do this! Stay strong!
(my first TC treatment tomorrow at 10 am!)
My sister is taking me. We were on the phone a little while ago and she told me to dress warm. I asked, "gee, what does one wear to a chemo treatment?" she replied "chemoflage, of course!"'lol
You have to laugh....

BMX w TE reconstruction 11/11/11, 4 TC, 3/12, 25 Rads 5/12 Tamoxifin 6/12, Prophalactic hysterectomy 12/18/12, Oncotype 16

Dx 10/14/2011, ILC, 4cm, Stage IIa, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Dec 28, 2011 09:24PM NancyHB wrote:

momof3boys:  You're lucky to have a sister that has such a great sense of humor!  That will be so helpful now, and in the days to come.  I will be thinking about you at 10:00 tomorrow morning, sending lots of positive energy, love and light your way.  Good luck!

Oncotype Test = 42

Dx 11/22/2011, IDC, 1cm, Stage Ia, Grade 2, 0/7 nodes, ER+/PR-, HER2-Surgery 12/05/2011 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Chemotherapy 01/19/2012 Adriamycin, CytoxanChemotherapy 03/15/2012 TaxolHormonal Therapy 06/07/2012 TamoxifenRadiation Therapy 06/12/2012 ExternalHormonal Therapy 10/19/2012 AromasinHormonal Therapy 12/28/2012 Tamoxifen
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Dec 28, 2011 09:26PM momof3boys wrote:

Thank you, Nancy! Send it your way, too! XO

BMX w TE reconstruction 11/11/11, 4 TC, 3/12, 25 Rads 5/12 Tamoxifin 6/12, Prophalactic hysterectomy 12/18/12, Oncotype 16

Dx 10/14/2011, ILC, 4cm, Stage IIa, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Dec 28, 2011 09:27PM profbee wrote:

I hear you, Nancy.  I'm an "up" person, but I have my days too.  The beginning is the worst...you're waiting on so many results.  My news went from DCIS to Stage II and at every piece of news I thought my husband was going to fall off his chair in disbelief.  

If there's something in those scans, we'll deal with that, but for now...stage 1a is awesome.  I had all those tests done too--and I just chose to look at it as the set up for chemo.  You will be so totally empowered by all this information and you can make choices now that will change that oncotype score--that will lower your chances of recurrence.  And in the future, when you feel a phantom twinge somewhere, you'll look back on this time as the time when you knew for SURE what everything was because you had just had all these tests.  :)  

It is tiring, so try to get some rest.  Speaking of, I wanted to hit the hay at 9 tonight.  My son doesn't have school this week (damn them!!!), and so he'll be up at 6:30 and ready to start playing!  I've done A/C  and Taxol (with another drug Lapatinib on a trial), and I'm here for you if you need anything.  

Oh!  And ask for 80s music in the scans...it totally distracted me and made me laugh!  :)

G'nite! 

Dx 3/2011 at 38 yrs old. 16 weeks of Taxol/Lapatinib 4/2011-8/2011, BMX with TEs 8/23/2011, 4 rounds of AC ended 11/10/11, Tamoxifin started 11/25/11, Herceptin starting 11/28/11, exchange surgery on 12/19/11.

Dx 3/1/2011, IDC, 2cm, Stage II, Grade 3, ER+/PR-, HER2+
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Dec 29, 2011 05:02PM NancyHB wrote:

I will keep the 80's music in mind - thanks for the suggestion!  Let's just hope my body doesn't start to move to the music; I vaguely remember the 80's and clubs and dancing...

Got my test results back today; blood work is beautiful, heart looks wonderful, and my lungs are clear - none of the spots or mets I was so incredibly terrified of!  I cried when the RN called; told her it was the best news I had heard in weeks, and I felt like the world had been lifted off my shoulders.  She said, "Gee, and here I just thought I was giving you expected news - glad I could make your day better!"  I'm finding it's the little things that make a difference - I need to keep remembering that on those less-than-perfect days.

Oncotype Test = 42

Dx 11/22/2011, IDC, 1cm, Stage Ia, Grade 2, 0/7 nodes, ER+/PR-, HER2-Surgery 12/05/2011 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Chemotherapy 01/19/2012 Adriamycin, CytoxanChemotherapy 03/15/2012 TaxolHormonal Therapy 06/07/2012 TamoxifenRadiation Therapy 06/12/2012 ExternalHormonal Therapy 10/19/2012 AromasinHormonal Therapy 12/28/2012 Tamoxifen
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Dec 29, 2011 05:06PM profbee wrote:

Yay.  I thought that was how it would go...well, I hoped!  :)  That's great news.  

Dx 3/2011 at 38 yrs old. 16 weeks of Taxol/Lapatinib 4/2011-8/2011, BMX with TEs 8/23/2011, 4 rounds of AC ended 11/10/11, Tamoxifin started 11/25/11, Herceptin starting 11/28/11, exchange surgery on 12/19/11.

Dx 3/1/2011, IDC, 2cm, Stage II, Grade 3, ER+/PR-, HER2+
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Dec 29, 2011 05:09PM momof3boys wrote:

Yay! Great news! Now you can relax

BMX w TE reconstruction 11/11/11, 4 TC, 3/12, 25 Rads 5/12 Tamoxifin 6/12, Prophalactic hysterectomy 12/18/12, Oncotype 16

Dx 10/14/2011, ILC, 4cm, Stage IIa, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Dec 29, 2011 10:10PM NancyHB wrote:

Yes, thanks, I can relax a little.  I'm not worried about the bone scan - no pain, nothing I've been worried about.  But as a former smoker, I couldn't help but worry about my lungs. 

I also have ulceritive colitis which, until recently, has been fine and under control.  Lately, it's been painful and just plain unpleasant - but I'm not going to worry that that "means" anything right now, either.  Part of the problem has been the pain meds, part has been all the sugar/alcohol over the holidays (two things I normally don't indulge in, but, well, my diagnosis has been an excuse for all sorts of bad coping behaviors).

So now, nothing to worry/think about until the 9th and the bone scan/echo.  Until then, lots of running, yoga, and knitting fancy chemo caps for when the time is right.  

Thank you all for your support while I lost my mind!!

Oncotype Test = 42

Dx 11/22/2011, IDC, 1cm, Stage Ia, Grade 2, 0/7 nodes, ER+/PR-, HER2-Surgery 12/05/2011 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Chemotherapy 01/19/2012 Adriamycin, CytoxanChemotherapy 03/15/2012 TaxolHormonal Therapy 06/07/2012 TamoxifenRadiation Therapy 06/12/2012 ExternalHormonal Therapy 10/19/2012 AromasinHormonal Therapy 12/28/2012 Tamoxifen
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Dec 29, 2011 10:54PM SleeplessIn wrote:

Hi ladies!

I received my Onco DX score yesterday (40!) and am still in disbelief, once again. This, of course changes my previously recommended treatment, just like for some of you. Instead of "just radiation", my oncology team now suggests chemo, radiation followed by 5 years of tamoxifen. - And I'm supposed to start chemo on 1/12 (4 AC, followed by 4 Taxol).

Still having a hard time understanding this, considering my tumor was 1.9 cm, with a 0.3 clear margin, and no lymph nodes involved (that they know of, anyway), which puts me at Stage 1. The one negative in my path report was that the grade went from 2 to 3 (highly aggressive). Other than that, my BRCA1/2 test was negative, and there is no cancer history whatsoever in my family. I was 39 when diagnosed.

Today I finally told my children (5 and 10) that mommy is sick, and that I will have to take a lot of yucky medicine to help prevent the cancer from coming back into my body.... We read a book together that had pictures of a mommy with cancer and no hair on her head. Then we cried together. I had to promise them I will be ok, so now I'll have to follow through on that!

Anyone else starting cheme in January? What kind? Does everyone have a bone scan? Why is that done, do you know. Just wondering. I had a chest CT and chest MRI, but no bone scan.

Best wishes and happy thoughts to all of you undergoing this journey!!! May the new year bring us all health and happiness!!!

left breast lumpectomy/SNB: 4 dd AC, 4 dd Taxol

Dx 11/4/2011, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Dec 29, 2011 11:16PM hrf wrote:

Bone scan will be done to determine if there is bone mets. 

BRCA2+ first dx in Oct. 2004 2nd dx Feb. 2009 a new primary

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Dec 29, 2011 11:22PM, edited Dec 29, 2011 11:27PM by Anne068

Yep. Mine did.  Went from mastectomy and "tomoxafin for 5 years", to "oh no. You need chemo.."

It's not an unusual scenario! Hang in there! You'll be great! Laughing

Anne -- Lumpectomy 7/5/10; Diagnosis 7/9/2010; BMX 8/10/10; TCx4 started 9/14/2010; BRCA1/2 Negative; Started Tamoxafin 12/2010; Delayed Bilateral DIEP 1/19/2011; Hyst/Ooph 12/19/11; Starting Arimidex 1/2/2012.

Dx 7/9/2010, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2-
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Dec 29, 2011 11:44PM Baileybump wrote:

Nancy - I can completey sympathize with you.  I went from having a "good" cancer, small, stage 1, lumpectomy and radiation to "you have a very bad cancer."  Stage 3, high Oncotype (39).  WHAT?  I sought 2 opinions for the chemotherapy, and am happy that I did.  My oncologist showed me several reports on 4 treatments of taxotere/cytoxin, followed by a Neulasta shot the day after, and then Tomoxafen for 5 years.  Today I had treatment #2.  So far, so good. 

Momof3 - At my pre-treatment appointment, my oncologist mentioned that another patient had sought a 2nd patient with a nationally-known doctor at University of Pennsylvania, and he recommended the same treatment plan for her (also stage 1, high oncotype).  She said, "not that I had any doubt, but sometimes it's good to hear that another physician in a highly respectful institution is on the exact same page." 

I think the bottom line is, we all have to be comfortable with our eventual decision.  Based on our ages, our over health, and our outlook on life are all factors.  I'm 44 years old and plan on 44 more years!  :-)

Hugs and health to all.

If God brings you to it, He will bring you through it!

Dx 10/3/2011, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR-, HER2-
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Dec 30, 2011 12:02AM robo47 wrote:

sleepless... I can say that I did not even have the onco type test done...being a grade 3, it was 6 rounds of T/C. My onc said regardless of my score, that was the treatment recommended for me. I believe chemo works really well for grade 3. I just finished all 6 rounds on Dec 12th !!! I'm bald and tired, but actually doing ok. I managed to walk 3 miles almost every day which I think helped. I am happy to have it behind me, but also happy to have it available... good luck with ya'lls decisions!

RoBo47

Dx 5/26/2011, IDC, 2cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2-Surgery 07/18/2011 Mastectomy (Both)Chemotherapy 09/12/2011 Cytoxan, Taxotere
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Dec 30, 2011 12:41AM SleeplessIn wrote:

Baileybump and robo47:
I see you both had/have T/C and no radiation to follow. Is that right? - The thought of overtreating is very scary to me, as is the thought of under-treating, so it is great to hear what sort of treatment everyone else gets (and why).

Robo47:
I will definitely try hard to exercise everyday, at least walk my kids to school and back, which adds up to about 3 miles/day.

left breast lumpectomy/SNB: 4 dd AC, 4 dd Taxol

Dx 11/4/2011, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER+/PR+, HER2-

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