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

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!

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.

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

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

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.

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.

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

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.

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?

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

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

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.

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.