How serious is stage 1, low grade cancer?

voraciousreader

Beesie - The Oncotype DX test was developed for the following reason.  Doctors knew that many ER+ women with early stage breast cancer would do well without chemo.  They believed that as many as 70% of women with ER+ tumors who were receiving chemotherapy were being overtreated.  Unfortunately, before the Oncotype DX test was developed, they had no idea of knowing which women were being overtreated, so the recommendation was to treat most cases.

With the development of the Oncotype DX test, women's tumors were classified into three categories. If a woman had a low Oncotype DX score, she would receive little benefit from chemo.  Whereas, those with an intermediate score, the test still hasn't determined how much benefit they would receive and for that reason the TailorX test is in the works to find out.  Then you have a group of women, who receive high scores and, without a doubt, benefit from chemo.

Recently, it was determined that based on the Oncotype DX test, close to 30% of treatment recommendations were changed due to the results of the test.

Oncotype DX Influences Breast Cancer Treatment Decisions

The Oncotype DX® breast cancer test may change treatment decisions for more than a third of women with early, estrogen receptor-positive breast cancer. These results were presented at the 2010 San Antonio Breast Cancer Symposium.

The Oncotype DX breast cancer test measures the expression of 21 genes in a sample of tumor tissue. The test generates a Recurrence Score® that provides information about the likelihood of cancer recurrence and the likelihood of chemotherapy benefit in women with early-stage, estrogen receptor-positive breast cancer.

Previous studies have indicated that use of the Oncotype DX breast cancer test can influence breast cancer treatment decisions. Test results may, for example, change the treatment recommendation from chemotherapy plus hormonal therapy to hormonal therapy alone (or vice versa).

To provide additional information about the impact of Oncotype DX on breast cancer treatment decisions, researchers combined information from seven studies that enrolled a total of 912 patients.[1]

• Physicians who used Oncotype DX changed their treatment decisions for over one-third of patients.
• Overall, there was a 28% reduction in use of chemotherapy as a result of the test.
• 4% of women had chemotherapy added to hormonal therapy as a result of the test. These women were initially considered low risk but were reclassified as high risk based on their Recurrence Score.

These results provide additional evidence that Oncotype DX can play an important role in treatment decisions for early breast cancer.

In another study presented at the San Antonio Breast Cancer Symposium, researchers evaluated a combination of the Oncotype DX Recurrence Score and factors such as tumor size and tumor grade.[2] The combined score did not predict chemotherapy benefit as well as the Recurrence Score alone.

References:

---

[1] Hornberger J, Chien R. Meta-analysis of the decision impact of the 21-gene breast cancer Recurrence Score in clinical practice. Presented at the 33^rd annual San Antonio Breast Cancer Symposium, December 8-12, 2010. Abstract P2-09-06.

[2] Tang G, Costantino JP, Crager M, Shak S, Wolmark N. Comparing the prediction of chemotherapy benefit in patients with node-negative, ER-positive breast cancer using the Recurrence Score and a new measure that integrates clinical and pathologic factors with the Recurrence Score. Presented at the 33^rd annual San Antonio Breast Cancer Symposium, December 8-12, 2010. Abstract S4

Secondly, the Oncotype DX test has been shown to classify tumors using different criteria than the traditional staging and can be used as one more tool to make a treatment decision.  For example, you might see, from time to time women saying that they had a "Grade 1" tumor with an intermediate or high Oncotype score and ask whether others had the same situation and they want to know what were their treatment decisions.  Likewise, there have been women with "Grade 3" tumors with low scores.  So it is EXTREMELY VALUABLE to have a Oncotype DX test done, especially with a Grade 1 tumor...because you might be missing an aggressive tumor that requires chemo.

Another important piece of information derived from the Oncotype DX test is that some women find out that they have REALLY low scores...which means that if they had a score of 2,3 or 4, for example...their risk of recurrence might only be 3 or 4% WITH Tamoxifen.  So in that situation, perhaps the risks outweigh the benefits.  BUT, a woman may still be encouraged to take it to decrease her risk of another primary tumor as well.

Finally, the Oncotype DX score assumes you are taking Tamoxifen.  So if you receive a score of 15...that means you have a 10% chance of distant recurrence if you take Tamoxifen.  If you do not take Tamoxifen then your risk of recurrence increases by almost 50%..so that would be a 15% chance of distant recurrence.  They say that with an AI, you can decrease your risk by 1 or 2% over the Tamoxifen number...but that hasn't been clinically proven yet.

kira1234

voracious reader, Do I understand it correctly the recomendation for the Oncotype test is for tumors .6mm or larger with no node involvment, but not do the test if the tumor is 5mm or small and no node involvment?

voraciousreader

Kira -- According to the 2011 NCCN Guidelines, an ER+/PR+ HER2 negative tumor >5mm, node negative or with one node <2mm says to "consider" the Oncotype DX test.

kira1234

Thanks voracious reader. I wonder if that's why my insurance won't pay for my Oncotype test. We are still trying to get it worked out and it's been 6 months.

voraciousreader

BTW - Kira...how's your arm doing?

Mine sucks!

annettek

Good luck mdg- I will be rooting for my motor city buddy (that is where I started out before Texas:) It will all be good and you will be on the mend before you know it...:)

kira1234

voracious reader, I'm not that kira, but I sure hope her arm is doing better. Sorry your having trouble with your arm is it LE?

voraciousreader

Kira -- No, thankfully it's not LE.  I had an axillary web syndrome, which is doing a better along with  a rotator cuff tear AND an impingement AND a frozen shoulder.  That was my "good" arm.  My other arm had surgery for a rotator cuff tear, elbow impingement and reconstructive surgery on my pinky. Oy. A mess.

kira1234

OMG I can't imagin. Hope you heal quickly

barbe1958

Kira, it would be too late to start chemo now if that's what you're waiting for. There is a 3-4 month window after surgery. So are you on chemo now and hoping to stop it if you get a low Onco score?

kira1234

barbe, I am not think about chemo. I did 1 treatment that almost killed me. I wass told by both Onc. and BS they were unwilling to give me more. I spent 5 months just healing from that 1 tretment. I had the Oncotype test done in July, but still trying to get it payed for. I already know my score is 24.

Hindsfeet

I'm glad you all brought up the Oncotype, because I've been asked that question on these threads and I had no idea what they were talking about, so of course I thought I should have one. I'm still unclear to what kind of test it is other than I just learned it is important if you are taking tx...possible for other reasons as mentioned by Beesie. This week, I am for the very first time seeing an oncologist. I will ask her about oncotype.



Kira, you asked what kind of cancer I have on another thread. From what I understood last week it is a mix bag. The doctor said it was infiltrating dutual carcinoma, grade 1, stage 1. I have no idea of the size other than it is small. My ER is 3+ and Prog-3+ which the surgeon said was good. The bs did not say it was micro-invasion, she said IDC. She wants to remove the sentinel nodes. I was sorta in shock and stressed when I saw the doctor. My husband was able to share things with me that she said that I do not remember the surgeon saying. I was upset mostly because she was stern and firm about a mx w/out nipples. She wants this surgery done ASAP...



Last night, I watched several MX and different type of reconstructions on U-Tube. I thought it would take some of the fear and questions out of the surgery. I felt sick afterwards. This feels so drastic for such a small tumor. But, like someone mentioned in an above post, it ended up being more and saving her life. I am so struggling.

The whole things feels like an assault on my femininity.

Beesie, anytime you want to add something else in here, please do. I appreciate your sensitivity to those who have DCIS.

swimangel72

More than an assault on our femininity, breast cancer is an assault on our lives. :-(

May God's angels watch over us all! 

Hindsfeet

voraciousreader ...oops...just saw your explanation on oncotype. Thanks

Beesie

voraciousreader, thanks for the info about the Oncotype test.  If I'm understanding correctly then, this means that the test would provide barry with valuable information about her risk of recurrence, even though she is choosing not to take Tamoxifen because the recurrence rate associated with the Oncotype score can be adjusted to reflect the fact that Tamoxifen won't be taken.  That's exactly what I was wondering about. Good information!  

barry, although the Oncotype is meant to help with the decision of whether or not chemo is necessary, in your case it might be a good test simply to help you determine the possible aggressiveness of your cancer. And that can help you with your decision. It's good that you are seeing the oncologist this week and will be able to ask about this. 

kira1234

barry,If the BS wants to do a mx without nipple recon it sounds to me like it is very close to that area and she is concerned the cancer might be into the nipple area. Removing the sentinal node is done to check to see if the cancer has spread. Have you had an MRI done? If not I would ask for one, it gives a very good idea if the cancer has spread or not, plus let you know if anything else might be lurking.

Sandeeonherown

I was told by my surgeon that a lumpectomy was as effective as a masectomy for small, grade 1 cancers....that there is no need to remove the entire breast. In fact, she was relieved when I told her "Sorry. I have enough to work with here...you are NOT taking my breast. If I need to have reconstruction after the 6 month mammogram shows the all clear, then I will worry about leveling things up then"....but I also did everything they told me....radiation (16 visits) and now tamoxifen. Because of the grade, the fact that I am, somewhat recently, single and need to work, and my margins were clear by a lot, we decided chemo was not for me (for the extra 1 or 2% difference I decided I was not going to pump myself full of chemicals and make myself ill for a few months). I may live to regret that decision but it is what I decided at the time and I do not regret it. I am exercising and eating well to keep the weight off with tamoxifen and an singing in a choir to keep my heart full and de-stress.

But everyone is different...some want the breasts gone so they do not have to worry about it....I would worry more if I didn't have them because if it came back, what tissue would they have to work with? Weird logic, I know...but I am satisfied with my decision...surgery was in August and I am now 2 months into Tamoxifen. I do not regret my decision

barbe1958

Sorry kira, I see it is the payment of the test was the issue, not if you're going to do it or not.

Sandee, the point of a mast is to get rid of the tissue so it can't come back. So there is no tissue to worry about. No one's logic is weird. We all did what we had to and felt best what was right for us at the time. I think your logic was perfectly clear!

Sandeeonherown

Oh yes...and the surgeon removed 7 lymph nodes...all cancer free but better safe than sorry.

Barry, you may want to bring in a minitape recorder so that you can play back what the doctors say. I recorded my meetings with my surgeon and radiologist and I found it incredibly helpful. That your surgeon wants to operate pronto is GOOD! They want to get it out of you before it grows or spreads...this is a good thing. Really...even if it feels scary.

The first surgeon I met, who was originally to be my dr., was arrogant and said 'sorry. I am the best but I am going on vacation so you will have to have someone else"..and while I did not like his attitude (another story), his assertion that he was the best made me very nervous about having someone else. I spoke to the breast cancer navigator about waiting until September and she essentially said "You do not want to wait...get it gone"..given she has worked in the field with hudreds upon hundreds of women in the same situation, I followed her lead...ended up with a wonderful, shoot from the hip female surgeon and had the cancer removed 2 weeks later. I simply said "Take MORE THAN enough...make sure there are very clear margins. I will deal with being lopsided later...right now we are focused on getting this out of me"...She did....

My wote would be 'just get'er gone'

LisaAlissa

Hi Barry!

Often, when surgeons say that it's good that a tumor is estrogen/progesterone positive, they say that because it can be treated hormonally (tamoxifen, evista, AIs and so-forth).  If you're not going to have those treatments, the sensitivity to hormones may not be a "positive" factor.

Somthing else to check w/ your doctors about...

I would second the suggestion that you record your medical consultations.  

I'm so sorry that you're dealing w/ BC for a 3rd time.  Hang in there.

Best wishes,

LisaAlissa 

Sandeeonherown

barbe1958...yeah. I understand the logic of the masectomy....it just did not figure into my thought process....I have no idea why it didn't occur to me....vanity? fear? thought that since it is small and I have a lot of 'extra tissue' just get rid of it and let me get on with it? No idea...doing my best to not regret the decision ....only time will tell. For those of you who did or are having masectomies, I believe you are the most courageous people I have ever met.

Hindsfeet

mdg ...What is the exact date of your upcoming mx? I'll be praying for you.

mdg

Barry it's on 1/27..only a few more days.  I am getting nervous.  Thanks for the prayers.

CrazyKitties

I had a dmx by choice, didn't need to---woke up with tissue expanders, pain, pain,pain, can't take narcotics, and 9 days after my dmx and tissue expanders, i had a dinner party. That's right, a dinner party for my friends and my family. I was so happy to not have to worry about this ever again. I went thru hell with the reconstruction, 6 months, all while in college, daughter who needs me, but I am serious when I say this---I would do it again. My PS ROCKS.  I like getting dressed in the morning. I am planning on getting some beautiful tattoos on my new boobs as an art form.

Hindsfeet

I'm not sure who asked about RSD staging. She had FB, which is different than RSD.

I want to say in sharing this that although dx with it several years ago, earlier on it was pretty bad. By sheer determination it is under control. It is mind over matter. I had several Ganglion blocks. Most of my friends aren't aware that I have a problem. In the beginning, it appeared to be spreading. Through regular swimming, hot tubs, and staying positive it is almost in remission (my right hand gets cold, joints stiff, burns and is clumsy). I am so fortunate it isn't worse. And I am an artist




Perhaps if you read the stages, you can see why I chose alternative over conventional medicine.



RSD pain isn't as acute in stage 3. It is more chronic pain at stage 3. I was stage 3 several years ago...perhaps now stage 2. Stage 1 is severe pain. if you look at pictures of it, you can see why people get depressed. It started to happen to me, but, again, mind over matter. Drugs and surgery can cause it to flare up again and take it to stage IV..





Table 3 http://www.rsdrx.com/what_is_rsd.htm



Stages of RSD



Stage I: A sympathetic dysfunction with thermatomal distribution of the pain. The pain may spread in a mirror fashion to contralateral extremity or to adjacent regions on the same side of the body. In stage one, the pain is usually SMP in nature.



Stage II: The dysfunction changes to dystrophy manifested by edema, hyperhidrosis, neurovascular instability with fluctuation of livedo reticularis and cyanosis causing change of temperature and color of the skin in matter of minutes. The dystrophic changes also include bouts of hair loss, ridging, dystrophic, brittle and discolored nails, skin rash, subcutaneous bleeding, neurodermatitis, and ulcerative lesions (Fig. 5). Due to the confusing clinical manifestations, the patient may be accused of self-mutilation and even "Münchausen syndrome." All these dystrophic changes may not be present at the same time nor in the same patient. Careful history taken is important in this regard.



Stage III: Inflammation becomes more problematic and release of neuropeptides from c-fiber terminals results in multiple inflammatory and immune dysfunctions. The secondary release of substance P may damage mast cells and destroy muscle cells and fibroblasts.



Stage IV: Identifies the final stage of RSD / CRPS manifested by:



1. Failure of the immune system, reduction of helper T-cell lymphocytes and elevation of killer T-cell lymphocytes. This is in contrast to the opposite, up-regulated function of immune system in early stages.



2. The hypertension in early stages due to alpha-1 up-regulation reverses to eventual exhaustion and to the common occurrence of orthostatic hypotension in this late stage. Blood pressure changes in this stage are due to autonomic failure. The failure of the sympathetic system exaggerates the response to drugs that lower or raise the blood pressure.



3. Intractable generalized extremity and visceral edema involving the abdomen, pelvis, lungs, and extremities due to long-standing disturbance of sodium-potassium and calcium magnesium pumps usually left untreated for several years. The same organs may eventually be subject to multiple abscesses due to failure of immune function.



4. Ulcerative skin lesions.



5. High risks of cancer and suicide.



6. Multiple surgical procedures seem to be precipitating factors for development of stage IV.



This late stage is almost the flip side of earlier stages, and points to exhaustion of sympathetic and immune systems. Ganglion blocks in this stage are useless and treatment should be aimed at improving the edema and the failing immune system.



Dystrophy_Clinical-Stages-of-Reflex-Sympathetic-Dystrophy.php

The combination of the above three factors, use of ice, immobilization and addicting drugs, exaggerates the SMP (sympathetically maintained pain) due to the original minor trauma.

annettek

barry- my bs and ps both urged me not to have nipple sparing surgery for my bmx as (and this is just in my case=-no one elses as many times it is successful) that is the one part of the surgery that often fails and they could turn black as part of that process. I decided that since I had already made the choice for a bmx if my biopsy was positive I had no great affinity for those nips any longer and i would just about drop dead if I woke up one morning and saw them turn black and fall off (well, I am exagerrating a bit but that is how I am). It is a personal choice. I am glad I had it to make.

Sandeeonherown- aw,nothing brave about my choice- i feared more surgeries, rads, etc and the recurrance in the other breast. it was actually the easiest decision in this whole mess that I have made. While I know we all have a chance of recurrance down the road, no matter our stage and grade, my gut told me this was the right choice for me.I have no regrets and in fact have now resumed patting my chest (an old weird habit that I have no idea of its origin) The first time I did that after the BMX it freaked me out but now with the TEs plumping up I am right back doing it again...hahah go figure. I pat these rocks and it comforts me in some strange way of normality, when in fact I know I am so far from normal in mind body or sould it is funny:) I have strange little pockets of flesh at the top of my scars where the doc is growing the extra skin to make my new nips out of! medical science can be a wonderful thing, odd, but wonderful nevetheless.

lago

My BS doesn't believe in nipple sparing surgery. Seriously when you think about it everything connects to the nipple. What if there are microscopic cells in there they can't see?

LizM

Barry, since you have DCIS in one breast and IDC in the other, I certainly understand why your surgeon is recommending bi-lateral with reconstruction.  It is not normally the biology of the cancer that dictates the type of surgery.  Just ask the many with DCIS (stage 0) who have had mastectomies.  You probably do have stage one grade one but you will not know that for sure until you have your surgery.  After my biopsy we thought my cancer was stage I and grade 1 but when I had my surgery it turned out to be grade 1 but was 2.1 cm and I had a positive lymph node, stage IIb.  I'm sure at some point  my cancer was stage 1 and grade 1 but we didn't find it then.  My recommendation is to have your surgery as soon as possible.  It is fine to wait 4 to 6 weeks to get opinions on types of surgeries, reconstruction and for scheduling but I would not wait until summer.   I had to wait 4 weeks to schedule my breast surgeon and plastic surgeon since I was having bi-lateral mastectomies with immediate reconstruction.  Good luck with your decision, I know that they are not easy.

LizM

One more thing to add:  Please be careful about reading about alternative medicine at this stage.  Because of the treatment we have today for breast cancer, we have over 2 millions survivors living in the US.  Those who specialize in and treat breast cancer know what the heck they are doing, trust them.  I have read too many stories here and elsewhere of women who have chosen the alternative therapy route and are no longer with us today.  You have early stage breast cancer that is highly treatable and even curable.  I am a strong believer in  complimentary medicine in that after I received  the best medical treatment I could have to rid myself of this disease, I followed it up with complimentary medicine in diet, herbs and exercise.  For me that was the best of both worlds.  Also, if you are going to get into complimentary medicine, please make sure you do lots of research to ensure that anything you take does not interfere with your breast cancer treatment.   

lago

LizM it took me 6 weeks to schedule my BMX with BS & PS! In the summer these folks go on vacation too.