Low Oncotype, node-positive and chemo decision

Ckat
Ckat Member Posts: 9
edited July 2019 in Stage II Breast Cancer

Hi all, I've been lurking since my diagnosis in August but this is my first post because I'm really struggling to make a treatment decision in the next few days. In brief: I am 47 years old and premenopausal. I had a 1.2cm stage IIA tumor, highly ER/PR positive, HER2-negative, low ki-67(1-5%), grade 1. It was removed via lumpectomy September 18 with clear margins. Although the nodes were clinically negative, the pathology report was positive in 2 of 3 lymph nodes (macromets of 2.1mm and 3.2mm).

However, because my Oncotype score was 15, I've had different recommendations from two oncologists. The first one wants me to have 4 rounds of Taxotere/Cytoxan. The second--head of breast oncology at a major research hospital--said he wouldn't even know what to advise his own wife in my situation because the data isn't back from current studies. He left the decision to me, but said he prefers Taxol/Cytoxan and would give it on the same schedule (4 rounds, 3 weeks apart). I'm completely overwhelmed, single and don't have a lot of family support, so I'm basically alone in making every decision. What makes the decision even more difficult is that I posted a question on the Johns Hopkins board and they basically said that although they couldn't provide a consultation, chemo isn't generally recommended with Oncotype 15 scores.

My biggest fears at this point are permanent hair loss and debilitating neuropathy, since I make my living as a writer. I'm definitely leaning toward chemo but am wondering if others out there in my situation routinely skip it. Also, I'm wondering if the Taxol/Cytoxan regimen might be a little easier. I know it's not as commonly prescribed. Adding another complicated twist to the mix is the fact that the research hospital that uses the Taxol-based regimen does not offer freezers or cold caps, while the Taxotere-based one does provide both Dignicaps and freezer access. It's also geographically closer. Anyway, sorry this is so long-winded! ANY advice, insight or general opinions would be greatly welcomed. Have a nice weekend everyone.

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Comments

  • Cpeachymom
    Cpeachymom Member Posts: 249
    edited October 2017

    Hi Ckat, sorry you're here. I had a very similar situation where my initial pathology was node negative but final was positive with macromets. Both my surgeon and MO advised me to seek a second opinion in Boston because they were also on the fence and as you've discovered, apparently there's no "clear cut" answers in this case. Dana Farber arranged for the oncotype testing because It wasn't done initially because of the positive node. My oncotype was 14. They recommended no chemo, my MO wasn't fully comfortable with that because of my age. I declined chemo, finishing up radiation now, taking Tamoxifen with ovarian suppression, and that's what I felt was best for me. According to my surgeon, I could ask 6 different doctors and would get 6 different answers! I wish you the best, there's no easy answers here

  • Ckat
    Ckat Member Posts: 9
    edited October 2017

    Thank you for sharing your experience, Cpeachymom. The confusion is pretty overwhelming.

  • Cpeachymom
    Cpeachymom Member Posts: 249
    edited October 2017

    Part of my decision was that I was also strongly ER/PR +. Over 90% for both, and the delayed Oncotype testing that got further delayed due to insurance pushed any post surgical treatment out. I was getting anxious that we weren't doing Anything for two months, giving whatever cells were left a chance to grow! So I told my MO that I did not want to delay the rads or Tamoxifen any further when those were going to give me the most benefit in order to have treatment that would offer little benefit. That seemed reasonable to her I guess, because she didn't push after that

  • leesad
    leesad Member Posts: 100
    edited October 2017
    It's such a difficult decision. I'll share my situation. During surgery 1 of 4 sentinal nodes showed just micromets so less than 2 mm of cancer. Final pathology showed 2 of 4 with micromets. My oncologist ordered Oncotype score. While waiting for those results I was anxious about not knowing status of my axillary nodes even though both my breast surgeon and MO said with just micromets, odds are slim they'd find anything further. I was not comfortable not knowing the status of my axillary nodes so I pushed for ALND and my surgeon said he did not have an issue going back in. They took out 14 additional nodes and 2 were fully positive even moreso than sentinal nodes. My MO in a panic really set me up immediately for AC/T chemo and said regardless of Oncotype I'm getting chemo as now there are 4 involved nodes even though 2 were just micromets. So right after port placement my Oncotype comes back a 3. As it was ordered prior to my ALND the report was for 1-3 nodes and Oncotype is relevant currently for 1-3 nodes. So being so low my MO was encouraged by this score and based on this changed my chemo regime to TC and took away the A drug as his thinking the long term heart risk from the A drug now outweighed any benefit. So I had the Taxotere/ Cytoxan for four rounds. It was once every three weeks. I am 98 per cent ER + and 90 per cent PR+. My MO said with the 4 nodes he had to give it to me but he does say he feels he might have overtreated me with the chemo. He said in maybe a few years the studies will show that 4 involved nodes can skip chemo. The TC is doable. I felt crappy for 3-4 days after each treatment last treatment being the worst where effects lasted about 10 days. But between treatments I started running again and biking and could go out. My blood counts were all good and I didn't have any restrictions. I had no neuropathy and my hair is growing back. I knew the status of my axillary nodes as positive. If I did not go back in for the second surgery, I would have known just the 2 of 4 nodes with micromets, no radiation recommended as I had BMX, and no chemo at all with an Oncotype of 3 and would've been sent on my way with anti hormonals and those two positive nodes still there. The thought of that makes me ill. For me I was ok doing the chemo. Others have said to me even with the four nodes they might not have done the chemo with that low of a score. You have to be comfortable with whatever decision you make. I am comfortable with all I've done.
  • labelle
    labelle Member Posts: 134
    edited October 2017

    I had one positive node (surprise!) found at the time of my surgery and SLN biopsy-2 mm with extranodal extension, 7 mm breast tumor.

    With an oncotype score of 11 both the OC at Vanderbilt and the BS/tumor board at UT said no chemo for me. Neither thought chemo would be helpful for me. As it was explained to me, the oncotype showed my BC would not likely respond to chemo and the fact that I had a deposit in a lymph node did not change that fact. Chemo brings with it some very real and lasting health risks. If it's not going to do any good, there's no point doing it. I think anything up to 18 is considered a low oncotype score. You might want to ask your OC about what the statistical chances are that chemo will actually be helpful in your situation, if and why they think it will respond to chemo despite a pretty low oncotype score. Because I had a lumpectomy, I did have radiation treatment.

  • jackster51
    jackster51 Member Posts: 139
    edited October 2017

    Ckat, that is a tough situation to be in! I was 47 at dx, although different pathology and was node negative. I had Taxotere and did not get my hair back, and that was 5 years ago :-( Not one eye brow or eye lash either and crippling neurapathy in my feet - but not hands. I am not a fan of Taxotere, but it was also before the label changed and I had never heard of anyone not getting their hair back, until it was too late for me.. There is a thread on here for cold capping. You might want to jump on their and read around.. Many women also ice their hands and feet. If I had to do it again, I would have either not done chemo at all, or asked for Taxol. Best of luck to you during this difficult time.

  • rockym
    rockym Member Posts: 357
    edited October 2017

    It's been six years for me from dx. I don't know why I looked at your post, but I did. I will say that my stats were similar. I had micromets and back then they were saying that really didn't mean positive. My Onco was 20 (I think) and I was about your age. The difference was I had little kids and thought I needed to give it my all. I am SO glad I did. I couldn't take Tamoxifen as it made me crazy. In the end, I was happy I did the chemo and rads and thought I really did cover my bases.

    As for the hair loss... that was a big thing too. Many ladies I know tried to save their hair or did cold caps and the reality was the cold caps were stressful and their hair thinned and some just didn't get what they bargained for. Me, I shaved it (really had my daughter do it) when the hair started to fall out. Yes, it sucked, but when it grew back in, it was sort of curly as first and I used a very small flat iron. Then it grew shoulder length (very, very layered) and eventually it was long and thick again. I think the eyebrows and lashes were most frustrating, but they came back too. Remember, it is all temporary. The body has a way of getting itself back together. Good luck.

  • meow13
    meow13 Member Posts: 1,357
    edited October 2017

    It may be temporary, but there is a percent that have permanent hair loss and side effects.

  • jackster51
    jackster51 Member Posts: 139
    edited October 2017

    Yes, Thank you Meow - I am one of them. It is 6-10% risk of permanent hair loss. It is not always 'just temporary"

  • rockym
    rockym Member Posts: 357
    edited October 2017

    There also may be permanent side effects for ANY treatment (chemo, rad, meds, surgery, rehab, etc.). Since your profiles don't show what you went though, don't scare this first time poster. MOST of the ladies I know over the past 6 years went through treatment just fine and are alive today. If you want to be concerned about each and every possible side effect, pick something better than vanity. I would never want my hair to not grow back, but it sure beats mets and death. Glad my kids still have a mom.

  • Ckat
    Ckat Member Posts: 9
    edited October 2017

    Thank you everyone for responding. I'm going to go through with chemo. Just trying to decide between a regimen with Taxotere and one with Taxol at the moment.

  • OCDAmy
    OCDAmy Member Posts: 289
    edited October 2017

    I just finished four rounds of TC (taxotere). I had very few bad side effects and still have some hair. I iced my fingers and toes during this drug and have no neuropathy or nail issues. It's totally doable!

  • jackster51
    jackster51 Member Posts: 139
    edited October 2017

    Rocky, with all due respect, I'm not trying to scare anyone. However, I was treated in 2011 with Taxotere (I'll fix my treatment section) and at 47 years old, with no kids, it was beyond shocking when I did not get my hair back. I live in So Cal where it has been over 100 degrees all summer. Try wearing head covering in that for the rest of your life. I'm certainly glad your children have their mother, but if I had I known about this potential side effect, I would have asked for Taxol, as I stated above, I wish so so so bad that someone would have warned me of this possibility, therefore, I am warning the OP. It's called Informed Consent and it is the Law. I'm sorry you have a problem with that.

  • Sara536
    Sara536 Member Posts: 5,937
    edited October 2017

    Anyone trying to decide how to proceed with treatment finds themselves in the stressful position of weighing the pros and cons of each drug and treatment available to them. Everyone's priorities are different. I know my priorities are different at the age of 72 than they would have been when my children were young. I think it is appropriate for people to document both negative and positive experiences.To withhold information so as not to scare someone, although well-meaning, is not fair. Only when we are aware of all possibilities can we decide if we are willing to take certain risks. Even then, as has been said by many, it will still be a crapshoot. We make the best decision we can and keep our fingers crossed. There is nothing worse than being lied to.

  • jackster51
    jackster51 Member Posts: 139
    edited October 2017

    Thank you Sara536!! Amen to that!

  • rockym
    rockym Member Posts: 357
    edited October 2017

    Jackster, your post, piggybacking with Meow, looked like a scare situation to me. I recall years ago women jumping in and trying to get ladies to change their minds about chemo and making those poor ladies decisions worse at the time. Most of the doctors mention the hair loss, although not all will bring up that some side effects can be permanent. I do get that, but that was where I was coming from. I'm sorry your hair loss was permanent and that does truly suck. I have 100+ weather for 6 months out of the year and although my wig was breathable, I would not want that forever. Like I said, I don't have a problem with letting ladies know, but it looked like a gang up with one post after another. If you were offended by my post I am sorry.

    I am glad for you Ckat, that you have made an informed decision. I wish you the best with treatment and an easy recovery.

  • meow13
    meow13 Member Posts: 1,357
    edited October 2017

    I have heard many women complain that doctors did not warn them of the risk of permanent hair loss there is a lawsuit although I don't think it is a class action. People should be informed and make their own decisions.

    Not trying to change anyone's mind. There are questions to ask your oncologist.

  • dtad
    dtad Member Posts: 771
    edited October 2017

    Hi everyone...why can't we have honest discussions about side effects of BC treatments? To call someone vain about losing their hair is mean spirited. We are here to support each other, not to name call. These are very difficult decisions and we all need all the information we can to help us decide what is best for us. Good luck to all navigating this complicated disease.

  • dtad
    dtad Member Posts: 771
    edited October 2017

    Hi everyone...why can't we have honest discussions about side effects of BC treatments? To call someone vain about losing their hair is mean spirited. We are here to support each other, not to name call. These are very difficult decisions and we all need all the information we can to help us decide what is best for us. Good luck to all navigating this complicated disease.

  • pupmom
    pupmom Member Posts: 1,032
    edited October 2017

    I guess I'm vain, cause the idea of losing my hair is very upsetting. I haven't had chemo, but if I had, or do someday, hair loss would be a concerning s.e. And it's not just women. Men are just as worried about this. Look at the multi-billion dollar industry for male hair restoration.

  • Sara536
    Sara536 Member Posts: 5,937
    edited October 2017

    I would think that MO's would be really, really careful about letting patients know about potential side effects. Maybe they're uncomfortable with having that conversation because they can't reconcile it with their image of themselves as benign healers. I think a number of us have had the experience of their MO feigning surprise when we report that we experienced a debilitating SE. Then it almost feels like a "blame the victim" situation or an accusation of exageration on the patient's part. Thank God for these threads, but be careful not to mention that you got information from the dreaded internet.

  • peregrinelady
    peregrinelady Member Posts: 413
    edited October 2017

    Yes, you can see it on their faces when you say, "I read online," that they totally dismiss you, even though practically everything I know about this disease, I learned here!

  • Sara536
    Sara536 Member Posts: 5,937
    edited October 2017

    When doctors can't hear or are not willing to consider their patient's concerns, they are missing a valuable learning opportunity. If they had a system of sharing what they learn from patients it would be an important informal research situation. Drug companies offer them gormet lunches and ceu's to listen to their spin. They recommend dosing for AI's that has not been thoroughly researched as regards weight and age of patients and the recommended dose is the same for everyone. I hear that some doctors do check estrogen blood levels. Do they change dosing accordingly? Some doctors have told their patients to just take it every other day rather than quit altogether and other doctors are not willing to change recomendations in any way. This leads to some patients experimenting themselves with taking less with only "how they feel" as a guide or maybe getting hormone levels checked on their own without really understanding whats going on. Remember the 1st generation birth control pills? Oops! sorry, that was way too high a dose! And HRT? Oops! Not such a good Idea! I realize I am going off on a crazy rant here but sometimes I feel the blind are leading the blind and I don't know who to trust. I am not trying to tell anyone what to do. I don't know what to do myself. I think maybe the best thing would be to delete this post before I get accused of confusing someone else







  • Bliss58
    Bliss58 Member Posts: 938
    edited October 2017

    My MO didn't warn me of possible permanent hair loss with Taxotere, and I would like to have been warned. Information is power and asking questions of the MO important. I didn't know until the lawsuit began, but by that time, my hair grew back, albeit straighter than it was. I've been pretty positive-thinking throughout this journey and wasn't upset about losing my hair because I "knew" it would temporary, and glad is was, but I have to admit, if it had been permanent, I would be pretty upset even if Taxotere completely got rid of the cancer.

  • Bliss58
    Bliss58 Member Posts: 938
    edited October 2017

    When I have to see the PA, she's the one who usually gives me a blank stare and tells me to "stop reading things on the internet." Even when I tell her I've gotten information off this forum from other BC patients not just "something I've read on the internet." Really bugs me.

  • meow13
    meow13 Member Posts: 1,357
    edited October 2017

    oh Sara, I know my MO said I would probably have no side effects from AI drugs. I was crippled in pain when I finally called my doctor he said stop the anastrozole today. The side effects were cumulative, my mo said why didn't you tell me sooner your pain was bad. Well, I didn't think I should complain about my pain. He immediately switched me to exemestane then it had different se's. I feel almost good now I am off drugs.

  • Sabina1974
    Sabina1974 Member Posts: 22
    edited October 2017

    Hi Ckat

    I had 6 rounds of TC and I have say I found it ok. I had chemo 25 years ago for a different cancer which included the famous A drug and was very ill on it. My onco nurse said to me if you were fine when you were pregnant with not much nausea you will find TC regime fine and I did. I wish you all the best.


    Sabina


  • swg
    swg Member Posts: 59
    edited November 2017

    My situation is similar to yours. I'm 50. Single. No kids. Extended family who really care about me..lots of friends.. a guy I'm KINDA seeing..a cat I love..but no reason I really wanna blast myself with dangerous chemo just to maybe get a couple more years or something.

    I feel fortunate my 2 tumors are hormone positive. I'm getting a unilateral mastectomy, end of this month, and my BS says I probably won't need chemo. BTW I saw a study that suggested if you're hormone positive and have 1-3 positive nodes, chemo really isn't gonna help all that much more.

    Maybe ask your dr about radiation..that's what my BS is talking about, if I have positive nodes.

  • Nurse4u2day
    Nurse4u2day Member Posts: 1
    edited December 2017

    Ckat I have no clue what you have decided to do but let me say this, my very dear friend was ER/Pr positive and one node with macro mets . My oncologist recommended that she have chemo but after a few more referrals she found an oncologist that did oncotype that came back low so he said no no and no to radiation. Well 1 1/2 years later she was just diagnosed with a recurrence . ShE will now have chemo. Now we are just waiting to see how much it has spread

  • Ckat
    Ckat Member Posts: 9
    edited December 2017

    Thank you everyone for responding. I ended up doing chemo--12 weekly Taxol with 4 Cytoxan. I'm halfway through and using cold caps. I will do radiation afterward.