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Posted 1/2/2007 8:30 PM (GMT 0)
Has anyone here had the above testing???How long did it take to get your test results and could you please tell me what your score was and the outcome of your decisions?

I am Stage II (2.4 cm), Grade I, node negative, er+/pr+...her2 +1...the Dr. said he wanted the above test just to be sure I would not benefit from chemo....they sent the sample off on Dec. 18th but have not received the results back yet. Am concerned as I had my lumpectomy on Nov. 15th and it seems like such a long time to start any kind of treatment..

Any thoughts would be greatly appreciated!!!!!!!!

Posted 1/3/2007 2:57 AM (GMT 0)
Sorry I did not have that test done I automatically had chemo. Good luck to you, and chemo really is not as bad as you think it is.

Keep us posted, we care.

L&H
Bernadette
Posted 1/3/2007 1:30 PM (GMT 0)
Hi..Not familiar with that test. I think I would call my Onc and insist on
some answers..It does seem like a long wait, although I am sure things
are slower because of the holidays.

Keep us posted...

Cathi
Posted 1/3/2007 2:10 PM (GMT 0)
Hi Jpann,

I was one of several women on the board who had the Oncotype DX test. I'm sure they'll write in soon.

It took 3-4 weeks for me to get the results. It was hard waiting, but my DX was much like yours, although my tumor was a bit smaller and the HER 2/neu was 2+ but was NEGATIVE with the FISH test. I think that would be something I would ask your Onc about - getting the HER test through FISH. It's more reliable.

Anyway, my Oncotype score was 7 so chemo would only give me a 2% benefit. I already approached the cancer very aggressively with a bilateral mastectomy (after the initial biopsy, then a lumpectomy). During the lumpectomy it was discovered that the cancerous breast was filled with DCIS so a mastectomy was highly recommended. The samples for the Oncotype DX were not sent right away, as is the case with you. That's because a different doctor must order that test usually. The good news is that Aetna is now covering Oncotype DX for many, many women, and I anticipate other insurance companies will follow suit!

Waiting is the hardest part. Know that even just 2 months of waiting, while it seems horribly long, won't change things foryou now. You have a very treatable cancer, and node negative is the best news you could hear! The cancer was removed from your breast with the lumpectomy, so any additional TX is precautionary at best.

I was considered young at DX almost 2 years ago at 40, and still premenopausal. I chose to take monthly lupron injections to supress my ovaries so that I could take Arimidex (aromatase inhibitor). I did lots of research, and found this to be best for me and my family at this time. Eventually, I may have an oopherectomy to forgo the lupron, but right now this works for me.

If you have any questions at all, feel free to contact me directly, and the ladies on this board are filled with such wonderful advice, love, and support! I'm glad you found your way here!!!! Hang in there, and keep the faith!!!!

L&H,
Lauré
Posted 1/3/2007 6:14 PM (GMT 0)
Laure,

Thank you for your reply...I just put a call into the Drs office to see if the test came back yet...I am considering having my ovaries removed since I am 46 and do not wish to have more children anyway...Yes, they did say that any treatment now is only precautionary, but I keep thinking that with my family history (everyone in dad's family passed with some form of cancer) that the sooner I begin treatment the better it will be.

I am thankfully one of the people that have very good insurance and they will pay 100% for the OncoDx test....the Dr. also ordered the BRCA testing but my insurance has refused payment for that one.

Im glad to hear that you are doing so will...gives me tons of relief to be honest...I know everyone is different and that mine is very treatable but it hard anyway.

Thank You

Jule

Posted 1/3/2007 7:34 PM (GMT 0)
Jule,

Be sure to let us know when you get your results! I'll keep you in prayer and all digits crossed for good news! Also, I hope the BRCA is favorable, as well!! Take care!

Lauré
Posted 1/3/2007 10:43 PM (GMT 0)
I spoke with the coordinator of the Onocoloy department this afternoon, she said she looked into things and that my sample didnt get sent out when it was suppose to so she called the place the test is done and they told her it would be ready Friday, at the latest Monday we will have the results.
I guess I just need to try not to worry that the nasty stuff is growing back while I wait...She also had my Dr. call and talk to me and he said the same thing....they got all of the cells when they removed the lump and treatment is strickly precautionary, but I wonder how many people they say that to...
Posted 1/9/2007 12:41 AM (GMT 0)
Hi Jule,

Did you get your results? I've been thinking about you and hoping for the best!

Lauré
Posted 1/9/2007 3:27 PM (GMT 0)
Lauré,

No I havent gotten the test results yet...I spoke with the coordinator again yesterday and she reassured me that I WOULD have the  results by the close of the day....but here it is tomarrow and still nothing...it is early here yet so am hoping to get a call sometime this morning..

Thank you for your thougths

Jule

Posted 1/9/2007 9:05 PM (GMT 0)
Lauré,

I guess I replied to soon this morning, I got a call from the coordinator a little while ago.....she said the tests are in and that someone from the Drs. office would be calling me to set up and appt. to go over them....

I asked her if she could tell me the score, of course, she said she is not suppose to but to my surprise she did anyway and asked that I not tell the Dr.

My score is: 12....

A little while later the nurse from the Drs. office called to let me know test was in and to schedule an appt to see the Dr. So guess I will know more tomarrow, but since the score is low Im certain he will not recommend chemo since he previously told me that...

Im thinking they will finally get this treatment show on the road and start the process of beginning rads soon.

Thank you for all your thoughts

Jule

Posted 1/9/2007 9:49 PM (GMT 0)
Jule, that's awesome!!! I am so thrilled to hear another low score. I'm equally happy that they discovered a way to help many women avoid the toxicity of chemo!! This is good news! I hope you get a chance to celebrate in your own way! You'll be in my thoughts, still, though. Write any time you need support! The ladies here are truly terrific!

L&H,
Lauré
Posted 1/9/2007 10:32 PM (GMT 0)
Lauré

Hearing that number today made me feel like a deflated balloon....I would do chemo if I thought there was benefit in it for me, but I dont want to poison  my body any more than is needed either...I also think it would be really hard on my family to watch me go through chemo so am relieved they wont have to....

Still hard to express all my feelings about this but for now the balloon one seems to fit the best....

Thank you, I will post again when I know more.

Jule

Posted 1/9/2007 10:38 PM (GMT 0)
Lauré,
Doesnt take me long to get curious about things does it ;)....I was re-reading one of your posts here and you are having lupron injections to suppress the ovaries....I am trying to decide on having ovaries removed (as Im 46, and do not want more children) or doing chemical suppression like you....
What kind of side effects do you experience with the injections? How often do you have to have the injection?

Thank,
Jule
Posted 1/10/2007 2:19 AM (GMT 0)
Hi Jule,

I don't really notice any side effects from the Lupron, aside from menopausal symptoms like hot flashes. Probably weight gain too, although that could be because I eat too much. At first I was getting the 6mg shot (I think it was that) but it didn't suppress my periods, so we went to 11.5mg which also didn't supress my periods, so now I'm taking monthly injections of the 22.5mg of Lupron and that has worked like a charm. The shot itself is a large shot put in the butt or hip muscle. Now my husband gives it to me to save me the trip to my onc which is an hour away. Sometimes I'm sore from the shot, but I find I'm less sore the way he gives it compared with how the nurses gave it. I see my onc every six months, unless something comes up. I've been on the Lupron for 20 months. It has to be given every 28 days. The first onc I had told me about Lupron but when it came down to still having my periods, he was pretty useless. I talked to my surgeon who referred me to this other onc who knows tons about Lupron and that's how things improved.

I still am considering having an oopherectomy, but I think I'll wait and continue with this. It would be a quicker way, I suppose, and there are other women on the board who have had the surgery. I'm kind of a chicken when it comes to surgery.

I understand your balloon analogy. Even with my score of 7 I had hoped for lower. Plus, all that waiting was really making me hyped up - kind of like when you play bingo or the lottery, but then you don't win the big prize. I think it's normal to feel a let down. Heck, I still worry that this pain or that pain means the big C has spread, but then my onc talks to me about the reality of my risk level.

The Lupron stops the ovaries from producing estrogen, then the Arimidex keeps the body cells from producing estrogen, so the menopausal side effects are probably a bit more than the average menopausal woman. Also, for some women, Arimidex has uncomfortable side effects (so does Tamoxifen and all other things). Let's face it, none of this is DESIRED, but it is NECESSARY.

Anyway, I ramble. If you have any other questions, I'm here nearly every day and happy to help any way I can. BTW, what part of the country do you live in? I'm in NJ, although I think we might be moving back to VA this year.

Take care,
Lauré
Posted 1/10/2007 1:57 PM (GMT 0)
I had my ovaries removed and im on Tamoxifan and the hot flashes are CRAZY!! Tammy
Posted 1/10/2007 4:03 PM (GMT 0)
Lauré, Tammy,

Thank you for your input....I meet the medical onco today again so will be asking him a ton of questions about lupron and ovary removal and AI's...

Tammy,

How long since your surgery?

Laure,

I live in Washington state. Two years ago my youngest brother and I took our mom to Washington DC on vacation and spent a little time in VA...what we saw of it was beautiful, I would like to go back again and just visit the country sides instead of all the landmarks like we did last time.

Take care

Jule

Posted 1/11/2007 4:26 PM (GMT 0)
Met the onco yesterday again....started me on Tamox, and scheduled an appt with gyn to consult about ovary removal, should hear from the radiation people today with a schedule so things seem to finally be progressing now after the long wait for test results.
Posted 1/11/2007 6:53 PM (GMT 0)
Thanks for letting us know, Jule. I hope you feel comfortable in all of your decisions, which are never easy! Take care of yourself and get plenty of rest in preparation for the radiation. I hear it takes a bit out of you. Keep in touch!!!

L&H,
Lauré
Posted 1/12/2007 6:07 PM (GMT 0)
Thank you Lauré...

The Dr. told me that it will wear me down closer to the end (about 3 wks into it is the normal) of the treatment so am trying to excercise more, sleep more, eat better in preperation for that....Im hoping to work through rads but have quite a bit of sick time built up so should be ok there too if needed.

I started the tamoxiphen the evening of the 9th and so far so good, not noticing any side effects but people say it takes time for them to show up, but hoping for the best with it.

Still waiting to hear from radiation department with schedule but should be anytime now..

Hope all is well with you, take care

Jule

Posted 2/6/2007 9:10 PM (GMT 0)
Hello all,

I am new to this forum - foregive me if I should begin a new post rather than replying to this one. It's so refreshing to read stories and see that we all struggle with difficult decisions. My OncoType DX score is 17, on the high end of the low risk category but still low risk. Two oncologists at leading cancer programs in New York City tell me the benefit of chemo is only 3% (regimen of CMF). I am not convinced that this benefit outweighs the risks of chemo (including 1% risk of secondary leukemia from chemo) and am leaning towards foregoing chemo. All other factors are good - I had a bilateral mastectomy 4 weeks ago, tumor size of .6, negative lymph nodes and no vascular invasion. Both oncologists suggested I could "try" chemo and stop if not well tolerated. I suppose I'm looking for support from other women who have not regretted their "decision" to forego chemo.

Thanks,
Anjie
Posted 2/6/2007 9:54 PM (GMT 0)
Hi Anjie,

My test score was 12...I decided against having chemo for the exact same reasons you mentioned...I had a 2.4 cm, er+/pr+,her2-, lump removed and am currently taking tamoxiphen and today will be my 10th radiation treatment out of 36.

For me I just had to weigh the odds and family history to make my decision...

1. my cancer was slow growing, slow growing cancers do not respond as well to chemo.

2. HUGE family history of other cancers. what if I need the chemo worse later down the road?? would it be as effective if Ive already had it once....

3. am I willing to take the risk of chemo side effects both in the short and long term?

Those were the main 3 questions in my mind and I found that I couldnt do chemo, plus none of the Drs. recommended it either...

I have also consulted with my gyn & Drs. to have a hystorectomy since I have issues with the idea of taking things (tamoxiphen) that can ultimately cause me more cancer issues further down the road.

You just have to think about how you want to work this...I dont know the details of your situation but above is baiscally mine. I will be happy to answer any questions you might have.

Jule

 

Posted 2/7/2007 7:44 PM (GMT 0)
Hi Jule,

Thanks for your insight -- those are the same questions going through my head as I reaffirm my "no chemo" decision.  Although I am 40 years old (with 2 small children) I feel the marginal benefit of 3% is not enough to outweigh the risks, as you mention both in the short term and long term.  May I ask your age/family situation?

Are you familiar with the TailorX study?  The NIH is seeking to enroll 10,000 ER+/Her2-/Node-women through cancer centers throughout the country to take (or who have taken) the OncoDx Test to study how those in the low/intermediate range fare with or without chemo.  Those who score 10 or lower do not have chemo, 25 or higher are treated with chemo, 11-24 score are randomized to either a chemo or no chemo group (the study pre-supposes hormonal treatment).  I have chosen not to participate in the study because I want to make my own decision, not be randomly assigned by computer.  The point is, if the doctors are comfortable letting patients in this range be randomly assigned, then they are comfortable ethically with a recomendation of no chemo. 

http://www.cancer.gov/newscenter/pressreleases/TAILORxQandA

I just want to be confident in my decision so I can continue moving forward.

Feel well, you're almost halfway through radiation!  How are the side effects of Tamixifen for you?

Anjie

Posted 1/15/2010 2:39 PM (GMT 0)

Yes, and I thank God I did! At my annual gyn/mammo exam, calcifications were found that upon biopsy werem found to be malignant. The surgeon originally stated that it was so small, he thought a lumpectomy and radiation would be all I would need. However, the sentinal node was involved, to a small degree. Chemo was suggested. With the path report in hand, and my tears and fears, my oncologist suggested this test. I really assumed he was just giving me time to "get used to, or ready for" chemo.

The test came back with a very low score, explained to me that the risk of reoccurence is small. He stated that chemo would be a benefit to me. So I am starting radiation and dancing on air. Also, praying that this is the right decision.

Posted 1/15/2010 6:35 PM (GMT 0)
HER- ER + PR+ Stage llA, nodes clear, Oncotype DX score 15
I received my results in two weeks.

Had lumpectomy 10/08/2009 haven't started radiation yet, but made an appointment today for 1/19

Have been told I will be on Arimidex for five years. Chemo was never mentioned.

Common side effects of Arimidex are !!!
hot flashes
joint pain (can be severe)
weakness
mood swings
sore throat
nausea and vomiting
depression
high blood pressure
osteoporosis (bone thinning)
swelling of arms and/or legs
headache

I have decided I will take this drug, but if I have any of these SE with the exception of hot flashes I will discontinue it and look into alternative treatment.

Jane
Posted 1/26/2010 1:49 AM (GMT 0)
jpann -
I'm surprised they let you do the oncotype. I thought the tumor had to be less than 2 cm. But congrats on the 12! That's great!!! I hope they are now testing larger tumors and saving lots more women from chemo.

I had a 1.2 cm and a score of 7, which is extremely low. I'm totally grateful for that because with my comorbidities I probably would not have survived chemo. For me, radiation was almost too much. The last day I couldn't even drive myself for treatment.

Now if I could just tolerate Femara! I'm taking a "vacation" from it because of the pain it causes me.
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