Genetic testing and Oncotype

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TazMom
TazMom Member Posts: 23

Can anyone tell me how these tests are supposed to work? The oncologist I saw said I had to choose what type of surgery I wanted. If I have a lumpectomy then I’ll have radiation, if mastectomy then no radiation. Either way I will have 5 years of hormone therapy. He said chemo would be determined after surgery (I’m guessing this is the oncotype test). Is that normal? My PCP said I should contact the oncologist to ask about genetic testing. The oncologist had never mentioned this type of test in my appt. Is this the BRCA test I’ve heard about? I’m wondering if I should ask for a second opinion oncologist. There wasn’t anything wrong per se, though I felt like I didn’t know anymore than I did when I came in. Has anyone else asked for a second opinion for oncologist? I want to make the best decision for myself, but I feel like I don’t have all the info. I’m scheduled to see the surgeon on Thursday, and I have the breast MRI next Monday. Does anyone have any suggestions or recommendations? Is all of this normal procedure

DX: Left IDC 3.2 cm grade 1, Right Atypical Ductal Hyperplasia 2.6 cm. ER/PR pos, Her2 neg (IHC)

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  • moth
    moth Member Posts: 4,800
    edited September 2021

    Yes, that's right. There's genetic testing and genomic testing.

    Genetic testing tests your genes for the presence of mutations that makes cancer more likely (like BRCA but there are many more). Not everyone is recommended for genetic testing. Your oncologist should explain why they recommend it or not.

    Oncotype test is a type of genomic test & it looks at the tumor and assesses the risk of reocurrence and esimates a benefit from chemo.

    if you go to this page and look down the left side you will see a section for Genomic testing and a section for BRCA and other genetic tests which explains it all https://www.breastcancer.org/symptoms/diagnosis


    Re the surgery, if there are cancer cells found in your lymph nodes, then you would likely need radiation even if you did have a mastectomy and you need to know that recent studies have shown better overal survival post lumpectomy + radiation. Your surgeon should go all over all these details with you. https://www.breastcancer.org/research-news/lumpect...

    I think it's fine to seek out a second opinion but probably too early. I'd wait and see what the surgeon has to say. I think you're still in the early info gathering stage. Hang in there - it gets better once you decide on a treatment plan.

  • oldladyblue
    oldladyblue Member Posts: 272
    edited September 2021

    Hi Tazmom and moth (moth you've been through so much!). I am new to this site and curious about lots of things too. I am treating at the VA since I am a Vietnam era veteran. There is a large team of people invoived in my care and all the information is confusing. Waiting is so hard. Plus I hate making "decisions" based on "best guess" information. I wish I knew all the questions I should be asking my doctors.

    I was told before surgery that it would be lumpectomy followed by radiation and hormone therapy. I had surgery, then after the OncoTypeDX test on my tumor cells the surgeon said chemo was a possibility now, in addition to radiation and hormone therapy. Per the OncotypeDX test my risk of recurrence of cancer is "moderately high" with a score of 28. My understanding of that test is that is it basically to rule out chemo as unnecessary for those with scores under 25. Or how much of a benefit chemo would be for scores of 26 or higher. Since I scored 28 (not that high) I was told by my surgeon that it was "up to me" if I wanted chemo or not. That is because he feels the benefit of chemo doesn't add much to the benefit of radiation and hormone therapy, that radiation and hormone therapy might be enough to prevent re-occurrence of breast cancer.

    My second concern is that the surgeon also told me that I had one "close margin" and could have a 2nd resection to make that margin bigger, but that it wasn't necessary in his opinion as it was 1mm and that is enough margin at other hospitals.

    I have a consult genetic testing on Sept 16th. Also, I am waiting for some tests ordered by the hemotologist and the radiologist.

    I feel like if my surgeon isn't certain if I need a resection again, or if chemo is beneficial or not, how am I supposed to make up my mind. At least with the OncotypeDX score that is a certain fact 28 out of a possible 100, but only 25 or below means no chemo needed.



  • moth
    moth Member Posts: 4,800
    edited September 2021

    oldladyblue, oh, the threshold Oncotype score issue is tricky but I have some information for you from our fellow boardie Beesie.

    I suggest you ask your oncologist to run the RSClin score. That takes the Oncotype + your age + the grade of the tumor + the size and gives a more precise estimate of chemo benefit. Beesie posted about it here: https://community.breastcancer.org/forum/85/topics...

    For your own benefit for large scale stats you can also look at Predict https://breast.predict.nhs.uk/tool & LIfeMath http://www.lifemath.net/cancer/

    Regarding the margin issue, as I understand it it is an area with not a lot of evidence & at that 1-2mm there's some variation of opinion among surgeons and facilities. At my facility under 2mm for IDC is considered close & they either re-excise or do a radiation boost, based on a risk assessment (age, whether the pt will be accepting or declining systemic therapy, nodal involvement, grade of cancer). Radiation boost to the tumor bed is a reasonable alternative from what I've read.

    It is hard when you feel you're making some decisions. I sometimes look at these people and go "wait, you went to school for decades. YOUR guess is going to be way better than mine about how to proceed." I find often they have a slight preference/recommendation, just not a strong one so they're a bit more reluctant to present it but if you can tease it out of them, IMO that's a reasonable path to take.

  • TazMom
    TazMom Member Posts: 23
    edited September 2021

    I had sent a message to my oncologist asking about the genetic testing. I don't have family history of cancer per se, but I have a great aunt on my mom's side that had colon cancer, and I have no idea of what's on my dad's side of the family (he's never been in the picture). The oncologist replied saying there wasn't anything that suggests a need for genetic testing. However, he did mention a clinical trial I might be able to take part in (City of Hope). Does anyone have experience with clinical trials? Is this a good thing? He said he'd give me more info when I see him again after surgery. Part of me wants to jump all over it because I'm curious what it would show, but without knowing the details I'm just not sure.

    Amy

  • moth
    moth Member Posts: 4,800
    edited September 2021

    TazMom, I suggest you reach out K-Gobby https://community.breastcancer.org/member/307255/p...

    She's at City of Hope and is also doing trial and genetic testing. You can read her story here: https://community.breastcancer.org/forum/5/topics/...

    I've participated in clinical trials before. I think it's worth it but you need to decide for yourself what your goals of care are. Here is a BCO page explaining lots about clinical trials and what to ask about them https://www.breastcancer.org/treatment/clinical_tr...


  • TazMom
    TazMom Member Posts: 23
    edited September 2021

    Great! Thank you so much moth!

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2021

    TazMom, I'm afraid I must question your oncologist's knowledge of the National Comprehensive Cancer Network's (NCCN) guidelines for genetic testing. I looked at the guidelines and a woman with a personal history of breast cancer (you) would qualify

    Diagnosed at age 45 or under

    Diagnosed age 46-50 and limited family history (your father's side missing)

    I read in another post of yours that you are 45. So it seems you do quality according to the guidelines in the USA at least. You can ask to be referred to a cancer genetics counselor -- maybe at City of Hope -- who will have expertise in eligibility as well as what genes should be tested (there is more than just BRCA). Hopefully you can do this before surgery because the result could inform your choice of lumpectomy vs. mastectomy.

    (I have not copied the guidelines here because of copyright, but you can look up NCCN genetic testing criteria for breast cancer.)

  • TazMom
    TazMom Member Posts: 23
    edited September 2021

    Thank you ShetlandPony. I’ll look into it. Not sure if I need to have my PCP request the referral to the genetic counselor or the oncologist. My PCP would probably do it since the oncologist doesn’t seem to think it’s necessary. He did offer the clinical trial, but no info till after surgery. Thank you for the info

  • jhl
    jhl Member Posts: 333
    edited September 2021

    Hi Taz,

    Are you in Southern California? If so, I would really encourage you to indeed go see those folks at City of Hope if for no other reasons than that which Shetland mentioned. Personally, I don't think genetic testing right now is a necessary driver of treatment because it is too soon to know if you will need chemotherapy. But, in the event you do, it is important to know if you have any actionable mutations which might direct therapy. Shetland did allude a bit of a lazy approach of your oncologist since it is now the standard of treatment for someone in your age group. Also, moth spoke of genomic testing - OncotypeDX - which tests the actual tumor tissue. That will indicate the degree of aggressiveness of your tumor and how likely you might benefit from chemotherapy - which actually could be done before surgery, depending on what your tissue discloses.

    Have you considered a second opinion while you get things sorted out.

    I wish you the best,

    Jane

  • TazMom
    TazMom Member Posts: 23
    edited September 2021

    I’ve thought about a second opinion for oncology but nothing he said sounded wrong. I thought having the genomic testing done beforehand would be helpful to determine my surgery type, but he told me that testing would be done after surgery. I haven’t heard that is necessarily wrong. I can contact my PCP on Monday to see what she says. The order in which everything has been done with my care has felt a bit backwards.

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2021

    Responding to jhl's comment "Personally, I don't think genetic testing right now is a necessary driver of treatment because it is too soon to know if you will need chemotherapy." The reason I was thinking genetic testing (blood test for Ambry panel or similar) before surgery would be important is that if a germline (inherited) pathogenic BRCA mutation is found, a patient might convert lumpectomy to double mastectomy because of the high risk of another occurrence of cancer in the breast. So no info until after surgery is not right in my opinion, TazMom.

    With ER+ Her2- bc genomic testing (of the tumor) as in Oncotype is often done after surgery to determine whether chemotherapy is recommended.

    Sometimes there is confusion between the two types of testing.

    This period of diagnosis and treatment planning, of gathering information and making decisions, is a crazy stressful time for sure. Waiting for appointments and test results is hard. There is a steep learning curve and sometimes we don't know what we don't know. Do all the steps, and ask questions and get medical opinions until you are comfortable with the plan. I think most patients would agree that once you have the plan and are taking action, you feel better.

    You can call City of Hope and ask them how to go about getting a second opinion and/or genetic counseling and testing there, and they can help you with the process.

  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited September 2021

    Also, keep in mind that just because you have relatives who've had cancer, it doesn't mean yours is connected to that. My mother and a paternal aunt had breast cancer. My maternal grandmother had uterine cancer. My dad had kidney and several skin cancers. I've had ALL of those, and the genetic testing done through my breast center showed zip, nada, zilch connection.

    oldladyblue, Did you have any positive nodes? If so, that would, for me, tip towards chemo. I had one micromet on my sentinel node and my MO was ready to schedule me for a port when my Oncotype came back as 17, in the safe zone. She expected it to be higher. I thought the "maybe" zone started lower than yours said, but maybe that micromet made a difference. I had to have a resection. It was fast and simple and I was home by late morning, and they just used the quickie twilight anesthesia in the vein. I think we must be close in age because I'm also a Vietnam-era vet.

  • Harley07
    Harley07 Member Posts: 164
    edited September 2021

    Both Shetland and Alice make good points, keeping in mind that every case is unique. There is a strong family history of BC on my maternal side however, I didn't have genetic testing until after my 2nd lumpectomy. I have a genetic mutation and would have likely opted for a BMX had I known that information prior to surgery.

    Alice - you are one strong woman. My 2nd lx was longer than the first and under full anaesthesia

    Best wishes to TazMom and oldladyblue.

  • oldladyblue
    oldladyblue Member Posts: 272
    edited September 2021

    Hi all, Somehow I lost this thread and didn't see replies til now. Thanks Alicebastable and Moth for your suggestions. I will take action on them. No, I had no positive lymph nodes. I am 65 in Nov, joined the Air Force at 17 in 1974, the tail end of the war and get all my care at the VA (very happy with the VA). I got my pathology report 2 days ago (should have gotten it earlier) and found out the margin around the IDC was less than 1mm, and that there was also DCIS taken out during the surgery (3 of 8 blocks positive) 1mm margins. I was surprised, know about the DCIS nor the less than 1mm margin. So I asked for a 2nd opinion which I will get on 9/30 from the head oncology doctor. On the chemo thread, someone mentioned the NCCN (National Comprehensive Cancer Network) guidelines, so I just read that report. And yes, 26-30 gives a choice between just endocrine therapy or chemo plus endocrine therapy. I will bring that up at the 2nd opinion consult. If I am still not happy, I will go to Moffitt Cancer Center for a 3rd opinion. Why your resection Alicebastable? Margin wasn't good the first time? Moth, I will ask about the radiation boost or need for resection and will look at the references you gave from Beesie and the other sites for statistics. Yes, my feeling exactly about being given choices about resection and type of chemo: I am not trained and you, the doctor, are asking ME to choose which therapy??? They only do 80-100 breast cancer patients a year at my VA hospital as of course mostly men go to the VA. But I want to be told all the facts and get a decision based on facts. So the waiting game goes on. It is now almost 2 months since my surgery and 3 months since diagnosis... I really would be crazy without my nurse navigator calling weekly and this site helps me tremendously to know I am not alone.

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