ONCOTYPE TEST and FISH TEST

The article she is referencing says it rarely causes ovarian cysts (which are benign). Not ovarian cancer.

The polyps referred to means uterine polyps.

Thank you, Melissa! I thought I read one thing, and without much checking posted an article. I am new to this. I am glad that you guys are on top of your game, and I am thankful to be corrected, because it has put me at ease, and I don't want to spread misinformation. I am sorry.

Waiting, waiting, waiting!

19 days ago my tissues were sent to California for Oncotype testing. I see my shiny new medical oncologist on Tuesday. Two more sleeps and I hope to have the answer to whether or not I need chemo. But this waiting is driving me insane!

Someone, anyone...how do you deal with the waiting? I cannot even go outside, I'm stuck to my computer researching every single last combination of chemo drugs.

One of my DDs worked as an MA for an Oncologist for 3 years...her advice to Mom was stay off the internet. The waiting is horrible. I walked, read, and focused on my 13 yr old DD.

My surgery was 3/6 and I am still waiting for a definitive answer about chemo.

My tumor was 1.4 cm, grade 3, KI67 20% (lowest end of high), ER 95%, PR 80%, focal LVI seen only in lymph vessels, not seen in blood vessels.

My HER2 tests from biopsy versus surgery contradicted each other, and I had two equivocals. For 6 weeks I was told I would be doing Herceptin and Taxol, then the surgical test came back negative.

I sought other opinions and then finally got a more thorough HER2 test (60 cells versus 20) which showed negative. First oncologist would have done TH anyway, so lucky I found other options.

My Oncotype score was 8. This was great, but it was done on the core biopsy block which had some important differences from the post-surgery tissue. I asked my first oncologist if he would ask for a retest, but he did not advocate strongly enough. There needs to be demonstrated need for a retest and there are strict guidelines.

A third opinion oncologist saw the need based on heterogeneity, and the block was finally received by Genomic Health for a retest two days ago. Now another wait!

I am on Femara, started 3 weeks ago, but am so afraid that the time since surgery is too long for chemo, if my Oncotype comes back much higher.

I have been waiting for two and a half months and have different opinions to sort through. I am not even sure I trust the Oncotype, since I read about Luminal B tumors.

No question here, just venting. It is starting to get to me! I cannot go outside because my lupus sun sensitivity seems worse this year: if I go outside on a sunny day I get a sore throat, burning and tingling, swollen glands and headache. I can only watch so many Netflix and read so many hours!!

My ONC recommended the Oncotype test and I got the result this week. It took a couple of weeks due to insurance approvals, etc.

While I was waiting for the result, my ONC told me "Google is NOT your friend" so I stayed away from the Internet, only bopping into this website for inspiration.

I am lucky......when I am stressed, I sleep

Kayb thanks for the support!

I would add that the original Oncotype done on the core biopsy did not go in my medical record, so I and my MD's did not know about it until the post-surgical block was sent to Genomic Health, and they returned it because they don't ordinarily do second tests. This caused significant delay. The first test was premature because HER 2 had not yet been done (and was positive on core!), and clearly that block was contaminated, so to speak, with DCIS, and had a different grade than the surgical block as well.

At any rate, at that point, my first oncologist had enough info to advocate for a retest, way back in late March. I pushed him to resubmit and even explained why I thought it should be redone, and he sent the block, but then again failed to advocate. I went to a second opinion oncologist who, in the first few minutes of the appointment, told me how she is good friends with my first onc. She seemed to be saying this to reassure me, but it certainly had the opposite effect. Like the first onc, this MD chose to ignore the positive HER2 test, and cheerily told me that my prognosis was excellent- solely due to Oncotype from the biopsy- the same specimen that had the discounted HER2! This was not even logical. These are smart people, how could they not see this?

In despair of sorts (and delayed by a week due to neuro surgery of one of my kids- she had a serious TBI and almost died last fall), I prepared a speech for the third onc at a cancer center less prestigious than the other two. I didn't need to say anything. She looked at the summary of pathology reports I had prepared, and immediately said "I don't blame you for being troubled." I didn't have to ask for 60 cells to be counted in the HER2 test- she offered it immediately. I didn't have to ask for a retest of the Oncotype- she offered it immediately. She scheduled chemo and Herceptin for the next week, just in case. She was ON IT!!!!!!

I don't feel angry just scared. Maybe anger comes later. I am so blessed though to have lucked into this third MD. There is NO way any of us can be 100% sure of any treatment's effectiveness, so I am ready to accept a course of action. Then I will be fine. I feel I have made mistakes along the way. I went for a mammogram of my found lump rather casually, expecting it to be a cyst. If I could give anyone a piece of advice, it would be, always go for diagnosis to a place where you would plan to get treatment. It saves on confusion later, and assures you of the best pathology from the start

The discordance between pathology (grade, KI67, LVI) and Oncotype appears to be unresolvable. One study says that the discordance supports the idea that Oncotype justifiably "saves" people from chemo. Another study says that the discordance means that pathology tests need to be used in addition to Oncotype, and that Oncotype needs to be just one factor in decisions, rather than trumping all. Flip a coin! And the TailorX trial that might clarify chemo or no chemo for intermediate Oncotypes isn't ready yet, either.

For others to know: 30% of grade 3's have low oncotypes. It's hard to feel comfy about this. And for some of us, chemo isn't always an extra that helps, it can actually harm our chances. Intuitively we want to do "all we can to beat this thing," so the tendency for me is to WANT to do it. But the whole idea of Oncotype is that it can even increase mortality.

Sorry so long folks. Fretting before going out on a nice Sunday morning. We all get good at distraction and over the last 3 months of waiting, I have gotten better at it!

I do not want my story to stress anyone. I am in a minority with some special circumstances. The only message is to keep going until you are happy with your doc. Most of them are really good, we just need someone who understands and clicks with our style and concerns.

Maybe try it first to see how you react. It is hard to read about side effects and bone loss etc. but not everyone has problems. Without the hormonal treatment, I was told to double the risk from the Oncotype report. Your score is low and your grade is low too, which is great, so you have to decide how much the difference in risk means to you. The Oncotype report is pretty good at illustrating benefit/risk...

Just want to post that my Oncotype retest score was 8, exactly the same as the first. This equals a recurrence score of 6% with Tamoxifen over 5 years, and I am on Femara. I have been waiting since 3/6 for clarity and did not expect this kind of clarity: I was expecting a high Oncotype.

I want to let everyone know, if it is helpful, that this was a grade 3 tumor with KI67 or 20% (high >19%) and lymphovascular invasion, but negative nodes. ER positivity >95% and PR 80%. Genomic Health told me 30% of grade 3's have low scores. Maybe this will help someone who is waiting.

I am coming to understand that not only is chemo not needed according to the score, but the genomic tests say it would do more harm than good over the long term. It is counterintuitive. I keep thinking we should hit it hard, but at 64, this new way of thinking is most welcome.

In fact, before such tests, my grade 3, KI67 and LVI would have been sure predictors of chemo. I am so grateful.

I have considered that it might be Luminal B, but it would seem not, At this point, I have to take my chances like everyone on here does.

Finally, I admit (!) to seeing three oncologists and my pathology was done at 4 labs for biopsy and 3 for surgical specimens- a little over the top but I needed it...

My first pathology after biopsy had me as HER2+ and for 6 weeks I was preparing for Herceptin and Taxol.

I went on to get two equivocal IHC's and one negative FISH for HER2. The last hospital, BIDMC, tested with 60 cells versus 20 in three areas of the tumor versus one, and I got a definitely negative IHC.

Other interesting things about pathology. One hospital got Grade 2, three got Grade 3. They all said different things about the LVI but the composite is that it was focal, and only in the lymph vessels, not blood vessels. I believe my initial HER2+ was from DCIS mixed in with the invasive tissue: DCIS is almost always HER2+.

Finally, one hospital said that the surgical specimen contained "biopsy site changes." I am speculating from something I read, that that could have caused the high KI67. As the tissue heals, it can look like cancer growing/cells dividing or something like that. I will ask my doc.

Thank heavens for the wonderful third MD who saw what was troubling about the picture and retested so I can be sure. Femara isn't fun but I'll take it and hope for the best. Thanks to those who were so supportive in PM's. If any of the wise ones on here have any comments about my course of action, please do. In the meantime I think I finally have a plan

Thanks for sharing! That is great news! I'm glad you have a plan and hope peace of mind follows right behind!

Hello, I am at the decision making process. Onco test result 19, In 46 years old, and my oncologist is recommending Chemotherapy. I had lumpectomy, sentinel biopsy...clear lymph nodes and margins which I am more than grateful...My grade is 3....aggressive...I ended up at stage 2 once they removed it. The question is whether to do Chemo. It is both ER and PR positive....I am very concerned about the risks of chemo/long term affects despite all the new anti nausea meds. Feel like I am not getting much information on alternative treatment options from my oncologist to make this decision...Any thoughts you may have, would be much appreciated