Unsure about the next step: go for chemo or have an Oncotype DX

jonep

Hi, everyone! This is my first time to post here. I've been lurking in the forums for quite some time now, trying to find answers, and unexpectedly finding much comfort and support, just reading how everybody else has been fighting and surviving.

I was diagnosed with Stage 2 invasive ductal carcinoma in my left breast last September, after feeling a lump and having a core needle biopsy. I had a total mastectomy done on October 6, with a sentinel lymph node biopsy. My nodes are clear and the margins were likewise clear. The tumor size was 2.4 cm.

ER score: 2% (I'm told this is a very low positive)

PR score: 2%

HER2: 1+ (this means negative, the doctor said)

Ki-67: 50%

Nuclear Grade: 3

I am 28 years old and have no family history of breast cancer, or of any cancer at all. Based on these, the doctor recommended chemotherapy and hormone therapy together. He said that my period will stop during chemo and there was a small chance of it not returning. I'm terrified of this, because I still want to have kids in the future, even if I have to wait after the hormone therapy.

He suggested having a Oncotype DX done, but unfortunately, I live in Japan and this is not covered by the national health insurance. It'd cost around $3200 here. I'm not sure if I want to have this test done, because what if the test just confirms that I need chemo? Then I'd have just wasted the $3200.

Should I get the Oncotype test or should I go ahead with the chemo?

I'd appreciate any thoughts on this. Let's all stay strong!!!

ElaineTherese

Hi!

I never had the Oncotype test performed because I'm HER2+. I was destined for chemo because HER2+ at Stage IIIA calls for Herceptin, Perjeta, and chemo. My sense is that you're young and have Grade 3 IDC; many MOs in the U.S. would propose chemo for you regardless of the outcome of the Oncotype DX. Yes, there is a chance that your period will stop. Have you looked into freezing some of your eggs so that you can still have children in the future? I would consider pursuing egg retrieval before beginning chemo, given your age. Best wishes and hugs to you!

Meow13

The oncodx, test is for er/pr positive cancer. I think you would be considered triple negative meaning hormone therapy wouldn't be for you. It sounds like chemotherapy will be suggested. There are many medications for side effects and cold caps to prevent hair loss. I would talk to doctor about preserving fertility.

Smurfette26

Hi jonep,

I'm so sorry you have to deal with this at such a young age.

My cancer was Multifocal Invasive Lobular Carcinoma. Was Grade 1 and HER2 negative. No family history.

When I saw my Oncologist last week he suggested I do an Oncotype test which surprised me as I had 1 positive node and my tumours were quite a lot bigger than they appeared on the imaging prior to surgery. My treatment thus far has been covered by Medicare, (same as your national health insurance scheme) and like you the Oncotype test is not covered. I was told it would be $4,000 here.

I spoke to my breast surgeon about it and he had a different opinion to my oncologist. He is still recommending chemo. He said in his opinion this test hasn't been widely used long enough for him to be totally convinced of it's efficacy over the long term. That's just his opinion and I'm sure it has been through extensive trials.

If I was to take the test and got an intermediate score I would still have the dilemma of deciding whether or not to have chemo and I would be $4,000 poorer. (Though we can't put a price on our health.) It would be very difficult for me, mentally and emotionally, if I was to get a score that indicated that a recurrence was extremely likely. If I was to forego chemo and I was to recur I would be devastated that I hadn't thrown everything at it.

As much as I don't want to have chemo, as scared as I am, I have decided to have it. My first treatment is next Tuesday.

Having said all that; only you can know what is the right decision for you. I wish you all the best whatever you chose.

A second opinion may help you decide.

Big Hugs, Donna.

ChiSandy

Hi, jonep. A HER2 score of +1 is considered negative. ER and PR scores in the low single digits are also considered negative. Your tumor is, therefore, triple negative and at a grade 3 (poorly differentiated cells, relatively high mitotic rate--aka speed of cell division, and low tubule formation) fairly aggressive. Because you have a triple-negative cancer, that means it would not be amenable to treatment with endocrine therapy (e.g., tamoxifen or aromatase inhibitors) or Herceptin. Your tumor was also >2cm. Oncotype testing is usually ordered for small (<2cm) node-negative (or no more than one positive node) clear-margin cancers in women close to or past menopause. At 28, you need to act quickly! Clean margins and negative nodes are a sign that though your tumor’s aggressive, you got it out before it could spread, and with mastectomy eliminated residual cells--probably making local therapy (radiation) unnecessary. The goal now is systemic therapy to mop up any residual cancer cells (“micro-metastases”) that might have gotten past the lymph nodes before they can fully metastasize--and with triple-negative cancer the only effective modality for that is chemo. Not just that, but cancers in women as young as you tend to be especially aggressive and need to be nipped in the bud ASAP.

I concur that your very next step should be fertility counseling and egg harvesting for future reimplantation once cancer treatment has been completed (if you want children that are genetically yours, rather than adopted). At 28, you have the potential for a long and full life ahead of you. Help your doctors try to make the most of it! And before you get disheartened, know that after 5 years of survival, the long-term survival rate for triple-negative cancers rises significantly, perhaps to the level of HER2+ cancers treated with Herceptin or hormone-positive ones treated with endocrine therapy.

And Smurfette, on what planet does your surgeon live? OncotypeDX testing has been around at least ten years, and the TailoRx study has shown that women with low scores have a VERY low rate of recurrence, with chemo adding little to their survival chances (and possibly doing more harm than good). They’re still crunching the numbers for women with intermediate scores--the only reason they’ve not fully compiled that yet is that the survival data in postmenopausal women with scores from 11 through low intermediate range is not in.....women are living too long, on average, to have something to compare it to. Your medical oncologist is right on the mark. And the fact that HE would be the one who would stand to gain from recommending chemo, yet is advising you take a test that could very well rule it out, ought to tell you something!!!

Moderators

Hi jones, sorry you have to be here... but wanted to send you a warm welcome also. We're super glad that you're finding the forums helpful and supportive, and hope that we can all help you make the best decisions along with your medical team. Please don't hesitate to reach out to us if you need any assistance, we're here for you!

The Mods

ElaineTherese

ChiSandy,

Smurfette's oncologist lives in Australia (not on another planet!) where the Oncotype test is not covered by insurance.

BarredOwl

Hi Jonep:

I am sorry you are facing these difficult decisions at such a young age. You have received good input to seek advice about fertility counseling and preservation prior to treatment.

However, I am not sure that the post above is correct in concluding that your tumor is "triple negative". It appears that the interpretation of ER and PR receptor status may differ from lab to lab even in the US, and differences between local practice are even more of a concern if you are in a foreign country (Japan, in this case).

As noted here, http://www.breastcancer.org/symptoms/diagnosis/hor...

"Different labs have different cutoff points for calling the cancer either "hormone-receptor-positive" or "hormone-receptor-negative." For example, if less than 10% of your cells — or fewer than 1 in 10 — stain positive, one lab might call this a negative result. Another lab might consider this positive, even though it is a low result. Research studies have shown that even cancers with low numbers of hormone receptors may respond to hormonal therapy."

If you have any doubts about the receptor status, you can ask your oncologist to confirm your receptor status, and should definitely defer to his professional expertise.

Hi Smurfette:

It sounds like you have given much thought to your treatment decision and the different possible outcomes. From your profile, I see that you are node positive (1/4 nodes). I note the statement above that ". . the TailoRx study has shown that women with low scores have a VERY low rate of recurrence, with chemo adding little to their survival chances (and possibly doing more harm than good)". In my view, that is an over-broad statement of the import of the recent TailorX results. Specifically, the recent TailorX study results found the test to be quite robust in a particular subset of patients scoring 0 to 10, with ER and/or PR positive, HER2-negative, node-negative invasive breast cancer who received endocrine therapy defined here:

http://www.nejm.org/doi/full/10.1056/NEJMoa1510764...

"The study included women 18 to 75 years of age with axillary node–negative invasive breast cancer that was estrogen-receptor–positive or progesterone-receptor–positive (or both) and that did not overexpress HER2. Patients had to meet National Comprehensive Cancer Network guidelines for the recommendation of adjuvant chemotherapy, including a primary tumor size of 1.1 to 5.0 cm in the greatest dimension for a tumor of any grade or a size of 0.6 to 1.0 cm in the greatest dimension for a tumor of intermediate or high histologic grade or nuclear grade (or both)."

Thus, the TailorX study does not really speak directly to node-positive patients (like Smurfette).

I note that Oncotype DX is indeed used in certain node-positive patients (see e.g., chart at bottom of this page and footnotes thereto):

http://breast-cancer.oncotypedx.com/en-US/Professi...

http://breast-cancer.oncotypedx.com/en-US/Professi...

I guess there may be access problems where insurance does not cover the test. In the US, there is contact information for help in obtaining approval, and possibly a patient assistance program. Since GenomicHealth also processes samples of international origin, those located in other countries and who are interested in having the test could try calling as well:

http://breast-cancer.oncotypedx.com/en-US/Patient-...

Good luck to both of you.

BarredOwl

BarredOwl

Hi jonep:

I was wondering if you might consider seeking a second opinion if possible under your national health insurance plan? When unsure, many patients seek a second opinion regarding one or more of their imaging, pathology, surgical and post-surgical treatment options.

Many members sought advice from a second medical oncologist at an independent institution, preferably a center of excellence. Others sought a complete review of all imaging (mammograms, ultrasound, and MRI (if any)), a fresh review of the actual pathology slides (which are sent overnight to the other institution), and all related written reports, plus an independent recommendation regarding post-surgical treatment.

In a second opinion consultation, you will be more familiar with the terminology and can prepare some questions in advance. Doctors explain things differently and some explain things better than others. The second opinion process can help you become better informed and may help you to have more confidence in your decision-making.

BarredOwl

jonep

Thank you so much for all your replies! My family and I have decided to forego the Oncotype DX test and opt for chemo instead. I have an appointment with the doctor on Monday and I will ask him about ovary- suppression shots? because egg freezing is wayy too expensive for us. We are just counting on the fact that I am still relatively young now and might have a good chance of regaining my fertility. Thank you again, everybody!!!

Dauna

Very best wishes for you jonep !  And like others, I'm so very sorry you find yourself here with us. I sincerely hope that the ovary suppression shots work for you for your future plans. The most important right now is to beat this and get it behind you. 

Dauna

marijen

Barred Owl, this node positive reference for the oncotype DX test - is it referring to Sentinel nodes or Axillary nodes? Everything I see the test only applies to DCIS even at BC.org. But it does say it is helpful in determining radiation treatment for DCIS, not just chemo. Have you seen that? Just trying to figure these things out.

SpecialK

marijen - there are two Oncotype Dx tests, one for invasive ER+, Her2- breast cancer, that was originally designed for node negative patients, but is now used for patients with 1-3 positive nodes, although some oncologists are still reluctant to submit samples for Oncotype Dx testing for node positive patients. The is no difference between sentinel and axillary nodes. The sentinel is just the first one (or sometimes several) of the axillary nodes that takes up dye, so it is thought it is the most likely to have cancer if it has spread loco-regionally.  There is now a new Oncotype test just for DCIS, which is a different test from the one for invasive cancer.  The Oncotype Dx for invasive determines whether there is benefit in adding chemotherapy to assumed anti-hormonal therapy.  The Oncotype for DCIS determines recurrence risk and helps with treatment decisions, such as radiation, after surgery. Here are the two links:

http://www.oncotypedx.com/

http://breast-cancer.oncotypedx.com/en-US/Patient-DCIS/WhatIsTheOncotypeDXCancerTest.aspx

marijen

Oh that clears it up for me, thank you Special K. My MO is one of the reluctant ones. Since I'm not having chemo I wonder if it makes a difference? If I had a good argument I could request it.

SpecialK

marijen - are you not having chemo because you don't want it? I support whatever choice you make regarding treatment, a low score might provide some comfort, but a high score might cause some anxiety.

BarredOwl

Hi Marijen:

Looks like Special K has answered your question. Consistent with Special K's comment, I could only find reference to "axillary nodes".

GenomicHealth provides the Oncotype DX test and sets forth eligibility for invasive disease here (scroll to chart at bottom):

http://breast-cancer.oncotypedx.com/en-US/Professi...

The test for invasive disease applies to patients receiving endocrine therapy, including certain node-negative and certain node-positive patients.

Regarding node-positive patients, the guidelines for Breast Cancer from the National Comprehensive Cancer Center (NCCN) (Professional Version 3-2015) indicate in a footnote [note added by me]:

"The 21-gene RT-PCR assay [Oncotype DX] recurrence score can be considered in select patients with 1–3 involved ipsilateral [same side as tumor] axillary lymph nodes to guide the addition of combination chemotherapy to standard hormone therapy. A retrospective analysis of a prospective randomized trial suggests that the test is predictive in this group similar to its performance in node-negative disease."

The accompanying commentary provides:

"The NCCN Panel has noted in a footnote that the 21-gene RT-PCR assay [Oncotype DX] recurrence score can be considered in select patients with 1 to 3 involved ipsilateral ALNs to guide the addition of combination chemotherapy to standard hormone therapy based on the retrospective study by Albain et al."

This is the Albain reference:

Albain Lancet Abstract: http://dx.doi.org/10.1016/S1470-2045(09)70314-6

Albain Full Text: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC305823...

See also,

Dowsett: http://jco.ascopubs.org/content/28/11/1829.long

BarredOwl

BarredOwl

Marijen:

Along the lines of Special K's question, Oncotype aside, has the medical oncologist explained to you why they are not recommending chemotherapy in your particular case?

It seems like post-surgery endocrine therapy + adjuvant chemotherapy is often recommended for ER+ PR+ HER2- node-positive IDC. However, various factors influence the chemotherapy decision (e.g., age, etc.), so I do not know what should be recommended to you, especially as you seem to have had preoperative systemic endocrine therapy (it is beyond my experience and understanding).

But if you are uncomfortable with the current recommendation in any way, or if you would just like additional input or confirmation that your current plan is the best course for you, you may wish to consider seeking a second opinion from another medical oncologist, if possible where you are and under your coverage.

BarredOwl

marijen

Thanks Barred Owl. I'll look up those links. I need to prepare a list of questions for Monday's appointment. It will probably be my best chance to ask. Special K I really don't want chemo and I would like to know that I don't need it. My MO doesn't seem to think I need it too. If it weren't such an expensive test, it'd probably be easier to get to get the test. There are other tests too...genetic and genomic.. I don't know of anyone in my family with breast cancer, my aunt died of melanoma. But they say family history isn't the great determiner? What tests would you request? I did not find my axillary node until it was 4.1 back in April. Between then and now there has been time for wandering cells to grow elsewhere. This worries me. I don't want to wait until I have to do more surgery etc.

BarredOwl

Hi Marijen:

I edited my last post.

BarredOwl

marijen

Barred Owl on Monday I will ask the surgeon about the chemo and the tests after he tells me what the pathology report says. If I still feel like I'm not getting enough good answers, I am going to make a new appointment with another oncologist and see if she helps me understand any better. My current oncologist set up an appointment for me six months from now and that would be after radiology. It doesn't seem to me that she thinks I need any further consulting. She is the one who went to talk to the surgeon and never came back. I guess she thought her job was done. There I was sitting and waiting in the room for her to come back... However, if she hadn't acted that way I never would have found my way here, that's for sure. So I'll ask you the same question I asked Special K. What tests do you think I should ask for as far as genetic and genomic?

marijen

Special K, it looks like you didn't have chemo or radiation. Did you believe that the BMX with anti-hormonal was enough or it's not called for with HER+?

I am getting really tired trying to figure all of this out. Woulda coulda shoulda, maybe I should have found a breast cancer education center six months ago. But..thought I only had DCIS, now I see even that isn't safe.

Tomboy

Marjen, I am surprised your Onc isn't recommending treatment with grade 3. Good luck with those wandering cells.

marijen

Well she is recommending radiation. Those wandering cells may be a figment of my imagination

BarredOwl

Marijen:

I note that surgery and radiation are local and regional treatments (loco-regional). They do not address the possibility of distant metastasis, which are what systemic treatments like endocrine therapy and chemotherapy are intended to control.

I found discussions with my surgeon helpful. However, even if the discussion with the surgeon goes well, it may still be advisable to seek advice of a second medical oncologist, because medical oncology is a very specialized area (and is not the area of expertise and training of a surgeon). It is not easy to do all this, but if a second medical oncologist had a different view, you would definitely want to know that now. That way, you know you did your best to investigate and confirm your treatment plan, whatever happens.

Pathology:

- Ask them to review the key findings of the surgical pathology report for you.

- Are there any findings that are new, surprising or inconsistent with prior pathology or imaging? Please explain.

- What were the various surgical margins? Do you consider these adequate? What standard do you use for adequate margins? Do these margins have any implications for radiation therapy?

- How many total positive axillary nodes?

- In light of all pathology information to date, what is the Stage?

Chemotherapy:

- What do consensus guidelines, such as the NCCN guidelines, recommend regarding chemotherapy in cases similar to mine, specifically: ER+/PR+/HER2-, node-positive, Stage IIIA IDC.

- Does the fact that I received preoperative systemic endocrine therapy alter the recommendation under the guidelines?

- If the recommendation regarding chemotherapy differs from what the guidelines provide, please explain what factors from the pathology and/or my presentation, such as age, menopausal status, grade, Ki-67, or other possible relevant factors, support a different recommendation in my particular case?

- Do I qualify for the Oncotype DX test? If not, why not?

- What are the possible outcomes of the Oncotype DX test? Could the outcome of the test change the current recommendation regarding chemotherapy, for example, if the Oncotype DX recurrence score was either in the intermediate range (18-30) or high range (31 or above)?

- Are there any other tests that might inform decision-making regarding the chemotherapy decision?

Genetic Testing:

- Should I consider genetic counseling and possible genetic testing, in light of my family history and presentation?

- If so, what is the recommended timing for seeking genetic counseling (and possible testing) with respect to my treatment plan?

Here is some information about assessing family histories from NCI, with active links. See especially the last link about "Cancer Genetics Risk Assessment and Counseling":

"The accuracy and completeness of family histories must be taken into account when they are used to assess risk. A reported family history may be erroneous, or a person may be unaware of relatives affected with cancer. In addition, small family sizes and premature deaths may limit the information obtained from a family history. Breast or ovarian cancer on the paternal side of the family usually involves more distant relatives than does breast or ovarian cancer on the maternal side, so information may be more difficult to obtain. . . Additional limitations of relying on family histories include adoption; families with a small number of women; limited access to family history information; and incidental removal of the uterus, ovaries, and/or fallopian tubes for noncancer indications. Family histories will evolve, therefore it is important to update family histories from both parents over time. (Refer to the Accuracy of the family historysection in the PDQ summary on Cancer Genetics Risk Assessment and Counseling for more information.)"

You may think of more!

BarredOwl

BarredOwl

By the way, members of the same practice/same institution may be influenced by each other and/or hesitant to contradict the recommendation of a close colleague. For this reason, obtaining a second opinion from an oncologist at a separate institution is preferable. If you are near an NCI-designated cancer center, that is a great option.

http://www.cancer.gov/research/nci-role/cancer-cen...

Others have recommended NCCN-member institutions:

http://www.nccn.org/members/network.aspx

Second opinions are very common and are expected. Be sure to confirm the institution/doctors are in network, and contact them to ask about their process and how to go about collecting/sending any materials they may need to review (e.g., pathology slides, imaging, written reports, etc.)

BarredOwl

marijen

Thank you Barred Owl, you've gone to a lot of trouble for me! I will print it and combine with other questions I have. I have pages of notes to consolidate tomoorrow. Will update Monday night what transpired.

SpecialK

marijen - I had 6 rounds of chemo, Taxotere and Carboplatin with Herceptin, then another additional 11 rounds of Herceptin only.  I had a mastectomy with large clear margins so breast radiation was not recommended.  I had a positive SNB with isolated tumor cells only - smaller than a micromet, followed by complete axillary clearance surgery due to my Her2+ status in a separate procedure from my mastectomies, which revealed a much larger positive node.  Since I had excellent surgical margins and additional axillary clearance surgery it was not deemed necessary to radiate the breast or axilla. The Oncotype Dx test is covered by Medicare (which you have, correct?) but it may be your current "clinical" stage that made your oncologist hesitate to order it, along with the positive nodes.  Oncotype is usually recommended for stage I & II, but not so much for stage III diagnoses, where chemo is usually assumed due to tumor size and positive nodes.  I am wondering why the oncologist you previously saw is not recommending systemic treatment beyond anti-hormonal therapy.  BarredOwl, in her very complete post, outlined excellent questions for your oncologist - or second opinion oncologist, after you get some clarity on your pathology from your surgeon. 

marijen

Thanks Special K, I don't know about this MO, two times I brought up my fear of spreading and she said Femara is a very strong drug. She's also the one that didn't bother to clarify the IDC on two prior occasions - maybe she thinks I'm an idiot. I won't be going back to her. I'll let you know what happens. I don't know how you survived all that, now I see the TCHx6. Maybe your youth has something to do with it.

SpecialK

marijen - there seems to be an issue with your oncologist - I would shop for a new one after you get your pathology report from the surgeon. She is right about Femara being a strong anti-hormonal - these drugs are often the first therapy chosen when stage IV and post-menopausal at the outset, but for a node positive IIIA to not at least suggest chemo is unusual.  Being Her2+ I didn't feel I had a lot of options, so I just went forward with the chemo and targeted therapy.  I feel like I got through it decently, as many say - it was doable, not a picnic, but I am still here!  I am probably older than you think - I just turned 59 - but thanks for thinking I am youthful!