Recurrence risk for small invasive breast cancers

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whiterose
whiterose Member Posts: 12

Hi everybody and glad to meet such wonderful and brave lady here.I was diagnosed in 2014 and had mastectomy for what I thought it was only DCIS, but large and high grade.Pathology report unforunately found one small 5 mm tumor and two other microinvasions.And, for the show to be complete, I had one close margin, less than a mm on my mastectomy specimen, the medial anterior deep margin.After many opinions on RT, the majority of doctors, including a medical board concluded RT is not necessary and I took the very difficult decision to not have RT, cause the risks outweights the benefits.Luckily I had a Pet Ct wich didnt find anything left on that close margin,inside. Knowing I had DCIS I had immediate reconstruction with implant, so Rt was a big problem for reconstructed breast, even I was willing to take out implant, if necessary. Now on Tamoxifen, since I am premenopausal(44), after trying Zoladex and Tamoxifen for 11 months and quit Zoladex because of hard side effects, even hypertension.That beeing said, in my country, for premeno women they generally recomend that combo, no matter your path report.

After that long introduction I would like to know if anybody had reccurence of such a tumor and when and how happened. The Onco wasnt recomended, beucase chemo was not on option from the begining, even after consulting many MOs, like 5. The features of BC were not that bad, ER positive, her2 negative, but pr negative, too. I had an intermediate Ki 67 of 20% that scared me too after readind on that forum and online articles.

God may be with us all, cause we need it so much, not for us especialy, but for our children(I have two girls of 8 an 6 yo).

Comments

  • whiterose
    whiterose Member Posts: 12
    edited January 2016

    I forgot to add I had 2 negative sentinel nodes and I was stage 1a.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited January 2016

    Hi whiterose:

    As a fellow Stage IA patient with a T1a size tumor, I am sort of happy there are no replies yet from people who have experienced a recurrence after a similar diagnosis to yours (hormone-receptor positive, HER2-negative small "T1a" size tumors).

    T1a Tumor > 1 mm but ≤ 5 mm in greatest dimension

    In the US, in general, the National Comprehensive Cancer Network (NCCN) guidelines for breast cancer (Version 1.2016) do not include chemotherapy for IDC that is node-negative (N0), hormone-receptor positive, HER2-negative and micro-invasive or ≤ 0.5 cm. In the usual case with these particular small, node-negative tumors, the risks of chemotherapy are not seen to outweigh the potential benefit.

    My HER2 status was unknown, but I found these recent papers to be of interest. While recurrence can happen as far out as 20 yrs or more, follow-up time in the studies was limited (5-years). There are some differences between subsets with different histologies, and the studies do not look into all aspects of individual pathology (e.g., margins).

    2015 Study from the Netherlands: http://www.bmj.com/content/bmj/351/bmj.h4901.full....

    Search "T1a" to find relevant information in the text and figures.

    2014 Vaz-Luis et al: http://jco.ascopubs.org/content/32/20/2142.full

    There is a .pdf access at right which makes it easier to see the tables and figures.

    I hope you continue to tolerate the tamoxifen and stay well!

    BarredOwl


    Age 52 at diagnosis - Synchronous bilateral breast cancer - Stage IA IDC - BRCA negative;

    Bilateral mastectomy and SNB, without reconstruction 9/2013

    Dx Right: ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes.

    Dx Left: ER+PR+ DCIS (5+ cm); Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).

  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited January 2016

    I'm sorry to suggest it, but you might get more of a response to your question if you post on the IDC Board...

    LisaAlissa

  • AmyA
    AmyA Member Posts: 70
    edited January 2016

    I had very similar results. Invasive ductal with markings of lobular carcinoma that was caught very small and presumably early. I did opt to have a double mastectomy to remove all breast tissue and hopefully lower chances of recurrence. So far, so good

  • marijen
    marijen Member Posts: 3,731
    edited January 2016

    Barred Owl - haven't the recommendations for chemo changed as far as the nodes? Now also not recommended for 1-3 positive nodes? I'm sort of surprised to see that a Pet scan would be able to see anything at all on the small margin area?

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited February 2016

    Hi Marijen:

    Because of variation by size, node status, etc., it is much easier to focus on the narrowest case.

    Since whiterose was node-negative (0/2 sentinel nodes), I only set forth what applies specifically to her situation: "IDC that is node-negative (N0), hormone-receptor positive, HER2-negative and micro-invasive or ≤ 0.5 cm", for which the guidelines state:

    "Consider adjuvant endocrine therapyy (category 2B)"

    Regarding your specific questions:

    (1) "haven't the recommendations for chemo changed as far as the nodes?"

    Yes, there was a very narrow change in the update to Version 2.2015 (added as a footnote) to allow the use of OncotypeDX in certain node-positive patients, although even if tested, many will still receive chemotherapy.

    (2) "Now [chemotherapy is] also not recommended for 1-3 positive nodes?"

    No, this is far too broad [EDIT: Text deleted: See current version of NCCN guidelines at NCCN.org].

    Professional current case-specific advice should always be obtained from your medical oncologist.

    BarredOwl

  • marijen
    marijen Member Posts: 3,731
    edited January 2016

    Ok Barred Owl I forgot about the oncotype dx as a factor. Do you know why they can't test a positive lymph node for the oncotype test? (because my IDC is occult)

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited January 2016

    Hi Marijen:

    Please ask your oncologist to explain why the test was not offered to you, sooner rather than later, to obtain case-specific expert professional advice.

    This is just what I think are possible reasons as of this date, and I may be wrong. The text below may contain factual errors, and is just my understanding. This discussion is just for Marijen's question.

    Did they ever test the tumor cells from the node to determine that the cancer cells in the node were hormone receptor positive, HER2 negative? Even assuming the cells were hormone receptor positive, HER2 negative, the test results would not be meaningful due to lack of validation in patients like you. (It hasn't been tested in patients like you.)

    (1) Validation of test methods/sample types: Methods of sample processing and assays must be validated using the specific kind of patient tissue sample to be used in a test. The entire process must be uniform and reproducible to ensure accuracy and reliability of test results used for clinical decision-making. The Oncotype methods were validated using primary tumor tissue taken from the breast (formalin-fixed, paraffin-embedded tumor (FPET)), and the commercially available Laboratory Developed Test uses primary tumor tissue. Tumor material in nodes is not primary tumor tissue. They must stick to validated methods/sample types to ensure accuracy and reliability.

    (2) Validation of test output and clinical correlation: OncotypeDX is a kind of biomarker test. In Oncotype for invasive disease, the biomarker is the mRNA levels or gene expression pattern/profile of 16 cancer-related genes (5 controls)). Expression data is used to compute a recurrence score, which is used to predict the likelihood of adjuvant therapy benefit and 10-year risk of distant recurrence.

    Very generally, biomarker tests like this are indicated for use in patients who share important clinical features with the patient populations represented in the studies that establish the prognostic and predictive value of the test. The test has no proven prognostic or predictive value in other types of patients. In other words, if the test is not validated in other types of patients, it cannot be safely used to guide clinical decisions for those other patients.

    The scope of validation is reflected in "eligibility". In general, if a person is not "eligible" for a commercial biomarker test, it may reflect that the test either was never tested in such patients (or not enough), did not work as intended in such patients, or is still being tested in such patients (and may not work).

    To my knowledge, T0 patients are not eligible for Oncotype, it has never been validated in T0 patients (who are quite rare), and it is not known which recurrence scores correlate with either low, intermediate or high risk in T0 patients. Do the standard ranges determined in a different patient population (T1,T2,T3) apply to T0 patients? Unknown. So the test results could not be safely used to guide treatment decisions in T0 patients at this time.

    Oncotype for Invasive Disease eligibility: http://breast-cancer.oncotypedx.com/en-US/Professi...

    (3) Validation in adjuvant setting only: Lastly, the Oncotype test is done on samples taken during surgery and before any systemic therapy is received, because it was validated in this adjuvant setting and shown to predict benefit of adjuvant chemotherapy (after surgery). It was not validated for and is not used to decide chemotherapy in patients who are to receive or have received neoadjuvant treatment. Also, in this regard, having received 6-months of neoadjuvant endocrine therapy (not a validated setting), introduces uncertainty about any results. The estrogen receptor has a role in controlling gene expression in response to estrogen. The Femara you received would block receptor function [insert: block estrogen production], which could alter gene expression patterns in the cell and any recurrence score obtained from them in an unknown manner that would also make the test results unreliable.

    BarredOwl

    [Edited last paragraph; see strikeout and insertion]

  • marijen
    marijen Member Posts: 3,731
    edited January 2016

    I can ask. I was told the node was ER PR pos, HER 2 neg but there's nothing on the pathology report, I think they are just going on the DCIS. Which I think is a misleading answer. Because they can't find the IDC is why AI offered first, to see if it would work, only way to know is tumor shrinkage. It worked. The node report only says 3m macroscopic cells. That's it. My RO actually said an IDC cell could form and go straight to the node without leaving a trail or the AI took it all out or it can still be there. Therefore full breast radiation coming up. I also still don't know why no Ki67 test. I'm rare and special : ))

  • whiterose
    whiterose Member Posts: 12
    edited January 2016

    Marjen I think Pet can see what remained inside i mean if breast tissue was left.I had a Pet ct at my brothers suggestion he is a radiologist specialised in Pet.He told me there was nothing left behing that close margin and that factored very much in my decision about Rt.

    Thank you very much Barred Owl for your reply and kind words

    PS Does anybody know how I can move this topic to stage 1 forum?

  • whiterose
    whiterose Member Posts: 12
    edited January 2016

    Lisa the reason I posted here although I didn t say was that my risk comes more from the dcis because the close margin.As for the IDC wich makes me miserable it seems that it has not a big risk of relapse cause it was excised all with 5mm margin and a good friend who is R O was more concerned about the DCIS.

  • whiterose
    whiterose Member Posts: 12
    edited January 2016

    Amy you made my day.I have seen from your signature that you had SNB one month prior to mastectomy is that right?I had mine the same frame time before mastectomy and I was worried about the possibility of cancer reaching the nodes in that month.Thank God we are good.

  • AmyA
    AmyA Member Posts: 70
    edited January 2016

    Your analysis after the double should have clarified some of that and given you some peace of mind. My BS was able to determine that tissue just around my tumor had shown signs that it would have turned but it was not yet cancerous and they got it all out. I don't think we need to worry about this cancer rearing its head.

    I did ask my BS if having cancer once made me more susceptible to it in general and that is something they medically don't know yet. I just got the standard eat well, exercise, don't drink excessively.

    One thing I will say, I think there is something very important to the follow up drugs. I read a post by another person on here who was had a double but doc said nothing else was needed, no chemo, rad or tamoxifen. And she got it again, in her breast wall. My aunt, my only connection to BC, hated taking her pill and quit exactly at 5 years and it came back not too long after. I'm happy to take a pill everyday forever if it would help!

    All the best!! Hugs.

    -Amy

  • whiterose
    whiterose Member Posts: 12
    edited January 2016

    Amy did your doc recomended you Zoladex with Tamoxifen?I see you are young maybe younger than me I am now 44.just wondering about treatment recomendations.In my country MOs usually say to take the combo no matter your dx.Zoladex made me miserable with hypertension being the worst se.But i worried a lot not taking it and if my MO would have said to continue to take it I would deffinitely did.

  • marijen
    marijen Member Posts: 3,731
    edited January 2016

    I don't know whiterose, if there are only a few cancer cells, the petscan may not pick it up.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited January 2016

    I was under the impression that Zoladex was not for stage IA tumors, but rather for more advanced ones.

  • whiterose
    whiterose Member Posts: 12
    edited January 2016

    No dear I was talking about breast tissue who could be left after surgery.It seems that pet scan can see it.In my case luckily it was nothing left at that dirty margin.

  • whiterose
    whiterose Member Posts: 12
    edited January 2016

    You are right but european docs have other opinions.They go aggressive thinking that a highly er positive BC must be treated with Zoladex no matter the stage.The problem is they apply the one fits all trearment no matter your bc characteristics.Our docs follow ussually european standards.

  • Dancermom1999
    Dancermom1999 Member Posts: 122
    edited January 2016

    Hi Whiterose...your cancer and mine are very similar. I had alot of dcis with 2 microinvasions ad 1 tumor 2.6mm. My cancer was er+ and pr- her2 - like yours...my ki67 was 16.67. Margins were ok- no chemo - not given for small tumor - no onco done. I started premenopausal on tamoxifen but developed pre cancer in uterus and large cyst on ovary after 9 months...had a laparascopic hysterectomy and now take anastrozole with no side effects. My surgery was January 2014. Regards, Kathy

  • whiterose
    whiterose Member Posts: 12
    edited January 2016

    Dancermom glad to meet you.Did your MO recomend Zoladex in addition to Tam? Although Zoladex could be pretty tough on our body it has a little advantage.It seems and I read one study about this and I will try to find it and post that Zoladex protects against thikening of the uterus beucase it stops mainly estrogen production in premeno woman.

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