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Long term "high oncotype test" survivors

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Comments

  • murfy
    murfy Member Posts: 259

    Nottoday: I've ordered the papers from my friends still in academe. I can't just read an abstract! Thanks for sharing those.

    In the papers I've read of late, being PR- almost correlates to being Triple Negative and I wonder if a more aggressive chemo treatment should be in order? However, most docs, including my MO, tend to ignore the PR- designate. However, I cannot find ANY clinical or research info to support my concern. Have you read this? https://link.springer.com/article/10.1007%2Fs12282-012-0380-z

  • nottoday
    nottoday Member Posts: 81

    Hi Laura,

    Thanks for the link. I am HER2 +2, so I wondered if I should not also be receiving Herceptin. But neither of the 2 MOs I discussed this with were very enthusiastic about the idea. About the time of my diagnosis in 2014, a clinical trial was underway to determine if women with HER2 +2 diagnoses benefited from Herceptin, and my understanding was the results would come out in 2017. But I haven't seen anything. I will try to find out.

    Best wishes.


  • QuinnCat
    QuinnCat Member Posts: 408

    Thank you BarredOwl - yes NED, but sounds like a drug that would be useful to me if not.

    Yes...I get Hope's name wrong, and continue to get it wrong for some reason! Do you know her?

  • BarredOwl
    BarredOwl Member Posts: 261

    Hi QuinnCat:

    I only know of her as a well-known clinical researcher and author of some articles in my file.

    BarredOwl

  • QuinnCat
    QuinnCat Member Posts: 408

    BarredOwl - a friend of my brother's, who has become a new friend of mine, see's Dr. Lugo (did I get her name right?). She's in a Clinical Trial with her. She adores her. And luckily, she will escort me from the East Bay to UCSF. (Stage IV for 11 years now.) I grew up there, but it is just a maze to me now, especially navigating UCSF which is spread around the City.

  • Pbello
    Pbello Member Posts: 83

    Hi! I am glad I found this chat group. It’s very encouraging to hear about all you ladies. Thank you for all your postings! I had BMX in beginning of January and just received my Oncotype score this past Friday. My oncotype score is 49. My other details are: IDC, stage 1, Luminal B, Grade 3, ER+ 10%, PR-, HER2-, KI67 80%. I do not know my ER, PR from oncotype. My MO has given me a choice of either ACT or TC chemo. He said he is comfortable with either. I just turned 40 and have two small children (5 yrs, and 21 months). I want to give myself the best chance and am trying to figure out which chemo treatment to do. For those with Similar dx and chemo, why did you go with either type of chemo?

  • moth
    moth Member Posts: 3,293

    Pbello - sorry, I'm editing my post because I'm not sure whether your chemo regimens are 2nd or 3rd gen...

    You can enter your info into the Predict Calculator and see the predicted statistical difference in the outcomes at 5 & 10 years. I would suggest you ask your oncologist about the numbers you get from this calculator.

    http://www.predict.nhs.uk/predict_v2.0.html


  • KBeee
    KBeee Member Posts: 695

    A recent study showed TV was not non inferior to AC+ T.

    Anecdotally, most of the early stage women from my Sept 2013 chemo group who had recurrences or progressed, when not “expected to” did TC.

    I know AC+T had a worse reputation, but it is individual. I tolerated AC+ T better than TC

  • murfy
    murfy Member Posts: 259

    Pbello, you and I have very similar aggressive phenotype except I'm almost 100%ER. Have second round TC tomorrow. My MO chose the treatment for me. In retrospect, I wish I had started out with more aggressive therapy, ie, AC+T and had contralateral mastectomy as you did. I may switch with rounds 3&4. There is always that option! Will look forward to seeing what you decide and how you do! Are you starting Rx in Feb?

  • Pbello
    Pbello Member Posts: 83

    Moth, Kbee, Imurphy - thank you so much for your responses! Very helpful!

    Imurphy - Good luck on your TC round today! You will do great! :) we definitely have similar phenotypes and will be going through this around the same time. Though you are a couple treatments ahead of me.hopefully I will start now in February. i have all the pre-tests done and have the port already in place (they did it when I had the BMX).

    THank you all!

  • moth
    moth Member Posts: 3,293

    I'm still waiting for my Oncotype (I'll hopefully get it on Friday) but my current thinking is that unless it comes back unexpectedly low and my MO makes a super good argument against it, I'd go for AC+T.

    I'm only 10% ER+ and Grade 3 (& the tumor was 1.7 cm 6 months after a clear mammo). It doesn't sound like the endocrine therapy will be hugely protective for me so I think I want to hit this thing hard.

  • murfy
    murfy Member Posts: 259

    Talked to MO today and we have decided to change things up mid-stream and go with dose-dense TC for remaining treatments (see link below). IMHO, we have one shot at this and I want to proactively hit this as hard as I can up front.

    Best of luck Moth and Pbello in your treatment choices! You both have amazingly similar cancer phenotypes! You're going to beat this... <3


    http://www.breastcancer.org/research-news/dose-den...

  • Pbello
    Pbello Member Posts: 83

    Imurphy - I think it’s so important for you to feel comfortable with your chemo treatment. Based on your messages, I think you are feeling good about this new choice to go dose-dense. and I think That’s great! The article you sent backs up your choice. I’m happy for you! Hit it as hard as you can!! You got this! Thanks for the article link!

    Moth - waiting for the oncotype is very difficult! I’m sorry! I waited for a while too! For some reason my insurance made my MO go through all these hoops so they would approve it. It took longer because of that. But don’t worry, soon you will know it and will be able to get this next ste started!

    I opted for the AC+T treatment. I’m happy with my choice! My first treatment is already scheduled for this coming Monday (Feb 12th). I’m scared since I don’t know how I will react. Yet, I’m happy have made a choice.

  • meow13
    meow13 Member Posts: 1,363

    Pbello, sorry you have "joined" the club. I think taxotere has more instances of permanent hair loss than taxol. Some are doing cold caps to save their hair and maybe protect from permanent hair loss.

    Good luck to you, I hope your treatments go well.

  • Pbello
    Pbello Member Posts: 83

    Hi Meow13 - for sure this is a club nobody wants to join. Given the circumstances, I am glad I have found all you strong, informed, helpful ladies. Being able to connect with all of you makes this process easier.

    Thanks for the info! The center I go to has the Dignicap. I hear cold capping hasn’t been as successful with adriamycin but I think I will give it a try. I have two small kids (5 yrs & 22 months) and I worry about their reactionnto all my changes.

    THAnk you!!

  • QuinnCat
    QuinnCat Member Posts: 408

    Pbello - in 2012 I was offered nothing but DD AC-T. I'm thankfully out of the chemo loop these days, but have noticed that Adriamycin is offered less. There has always been some heart risks with it and maybe other items, but that was barely discussed with me. The head MO at Oregon Health Sciences U. was about "throwing the kitchen sink" at my cancer and my Oncoscore was far less than yours (39, ER+ and barely PR+, luminal B). I am doing well and as far as I know, my heart is too. I also received an extra 6 weeks of Carboplatin because I'm brca2+. All of this chemo will soon be a distant memory for you.

  • Pbello
    Pbello Member Posts: 83

    Hi QuinnCat - I noticed the same and they gave me a choice between DD AC+T and TC. the MO said he was comfortable with either option but when I pressed him for his preference in my case, he eventually said DD AC+T. I know it’s more intense, but like you said, my oncotype is very high (And so is my KI67). So I am also throwing the kitchen sink.

    I’m so happy for you! Over 5 years post treatment and doing great! I hope I can be like you in 5 years! Congrats! Can’t wait for all this to be a distant memory. ;)

  • moth
    moth Member Posts: 3,293

    Soooo, I finally got my Oncotype results.

    I got 60 (!!!!!! Shocked) & a change of diagnosis to triple negative.


    My biopsy & lumpectomy pathology both said weak ER (10% staining, allred 4/8 and 3/8). But the Oncotype said 6.0 for ER and the threshold is 6.5

    Dose dense AC+T starts next week.

  • KBeee
    KBeee Member Posts: 695

    Remember that the goal of oncotype is to determine the benefit of Chemotherapy. Triple negative, or near triple negative will always be high because Chemotherapy is of huge benefit

  • meow13
    meow13 Member Posts: 1,363

    oh moth, I am so sorry. Remember 60 is just a number and with treatment there is no reason to think this cancer is going to come back. Especially being grade 3 the chemo should knock it out. Good luck.

  • Pbello
    Pbello Member Posts: 83

    moth - like what Meow and Kbee said - high Oncotype means there is a treatment available (chemo) which will GREATLY reduce your risk of Recurrence. Im not excited to have a high Oncotype, but I’m so glad there is something I can do to improve my outlook. You can do this! :)

  • moth
    moth Member Posts: 3,293

    Thanks for the encouragement, you guys!

    Ok, I'm going to reframe the score as saying my cancer is super weak when faced with chemo. It's a weak pathetic cancer that will just limply fall over and give up when it sees chemo coming at it. Chemo will make the cancer cry and go home.

  • Pbello
    Pbello Member Posts: 83

    moth - love it!!! :):):) that’s the spirit! You will beat this!

  • legomaster225
    legomaster225 Member Posts: 356

    Sorry Moth. I too believe that the chemo will be super effective against your weak pathetic cancer!! That's a great way to look at it

  • scrafgal
    scrafgal Member Posts: 413

    right on, Moth!

  • BarredOwl
    BarredOwl Member Posts: 261

    Hi Moth:

    Whether you were considered ER+ or ER- or "ER negative-like" would not affect advice re chemotherapy in your situation.

    However, being 10% ER+ by IHC (immunohistochemistry) would ordinarily be considered ER+ for purposes of endocrine therapy, under guidelines from ASCO (which use a 1% cut-off).

    The single-gene ER score in the Oncotype report does not typically override the pathologic determination of ER positive status by IHC (although there might be appropriate exceptions). This is because antibody-based IHC methods are considered to be more sensitive.

    If you did not receive a recommendation for endocrine therapy, please consider seeking a second opinion, (especially as your single-gene ER score was quite near the ER Score positive/negative cut-off of 6.5 units).


    General Information - Different Methodologies - Different Sensitivity

    The single-gene Oncotype "scores" for ER and PR cannot be directly compared with the results of IHC, and do not necessarily override ER and PR status as determined by IHC.

    Validated pathology methods ("IHC") for determining ER and PR status use antibody-based methods to detect ER protein and PR protein. The pathologist looks at whole cells. Results are reported as percent positive cells in a field of view (i.e., some cells are stained by a "molecular tag" and are seen as "positive for staining," and some cells are not stained). The percentage of cells that do stain is reported.

    Oncotype uses a completely different method (Quantitative Reverse Transcriptase - Polymerase Chain Reaction, "qRT-PCR") to measure ER and PR mRNA from ground-up cells (obtained by microdissection I believe). It gives a numerical score in "units", where particular unit values falling below a specified positive/negative cut-off of X units are considered "negative" by Oncotype (if the arrow/triangle falls in the orange range at left).

    Thus, IHC and Oncotype use completely different analytical methods and sample cells in a different way. They measure different molecules: ER protein versus mRNA. The numerical outputs are reported in different "units" and cannot be directly compared: percent positive cells versus score in unit values.

    These methodological differences can lead to apparently differing degrees of positivity, which "confuses clinicians and unnecessarily creates doubt about validated immunohistochemistry assays:"

    Krauss (2012): https://www.nature.com/articles/modpathol2011219

    Best wishes as you move forward with treatment.

    BarredOwl

  • moth
    moth Member Posts: 3,293

    Thank you BarredOwl for that information. Super helpful. You're a treasure! Heart


    My samples have been sent for re-testing to the head pathology lab for the provincial cancer agency and my team will look at it all again. My MO also raised tumor heterogeneity as a possible cause of the score variance. Well, we have 4 months to sort it out while I do chemo but sure sounds that given 2 IHC assays at 10% ER+ endocrine therapy should be pursued.

    I think it only changed chemo to the extent that before, she was going to give me choice of CT or AC+T but with this, her recommendation was strongly for AC+T.

  • BarredOwl
    BarredOwl Member Posts: 261

    Hi Moth:

    Sounds good. Glad to hear your team is on it and reviewing the matter closely.

    BarredOwl

  • ordinarybeauty
    ordinarybeauty Member Posts: 15

    This thread has helped me a lot. I got my oncotype score (53) back yesterday and went into a funk. Prior to getting the score, I thought I could get through my cancer treatment without chemo so I was seriously unhappy about having to do chemo (dd AC*4+T*4). After reading this thread, I am re-framing my thinking to "this score helps me to know that this chemo is the best chance I have of long term survival." I'm not afraid of dying, its just that I'm not done yet!

  • Pbello
    Pbello Member Posts: 83

    ordinary beauty - that’s the spirit! I think half the battle is your attitude towards it. I have the same treatment plan (Ac + T) and am going for my sencond infusion on Monday. I was shocked with my oncotype score and chemo recommendation. Yet, I quickly understood that chemo is my friend. The more aggressively you’re BC is the better chemo is for you. Though it isn’t easy, it’s doable and it will save you’re life. :):):)

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