Reassurance please.... Onco score

Options
Bec-Ky
Bec-Ky Member Posts: 216

So.... After I had my surgery, (Feb 15th) and after the pathology report came back and everything was clear, margins clear and no lymph node involvement.... they were supposed to have sent out my tumor sample for an "onco type" testing to get a score. They told me it was sent out on Feb 22nd, and that it would take about 2 weeks for the results.

I went to my consultation appointments on March 9th and was supposed to have the score by then, but then I found out that no one sent it out until the DAY BEFORE!! (March 8th!!!) I sure would like to PERSONALLY speak with the individual(s) who didn't do their job that day... And the next... And the next and then 2 weeks went by. Ugh. 😠 (but it's ok im over it now)

I have at the most, until this Thursday, which will be 2 weeks from when it was supposedly sent out....to find out this score.

Once I get the score ... I can start treatment!

I'm so upset I could have started radiation 2 weeks ago! Is this 2 weeks really going affect anything!? I mean they are doing radiation, obviously to kill anything that could me microscopic that we can't see right? Yeah so waiting 4 weeks post surgery seems like a lot. Well, by the time I get the score and have the CT scan... Etc and get things scheduled... It'll probably be more like 5 weeks! (that's if it's just radiation)

Reassurance please....


«1

Comments

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited March 2018

    Hi there Bec-Ky. I know it is maddening when medical professionals don't act promptly. Geez. But in any event, most radiation oncologists won't even think about starting treatment until five weeks after surgery, just to be sure you're all healed up. So no worries there. The radiation will be killing those microscopic odds and ends soon enough!


  • Ingerp
    Ingerp Member Posts: 2,624
    edited March 2018

    Yeah I think at least a month post surgery is typical. In fact your BS has to say you’ve healed enough to start rads. And now that I think about it, many of us (including me two years ago) need a second surgery to clean up margins, so it’s more like 6-8 weeks after the initial surgery. NBD.

  • operamom1
    operamom1 Member Posts: 40
    edited March 2018

    I had some issues with getting my sample sent out for oncotype testing too. I had my surgery done at a different hospital than my oncologist, and the oncologist didn't get the pathology report until a week after my surgeon did. It was maddening. In any case, it was finally sent out and I got the report 2 weeks later. My score came back as a 13, so I skipped chemo and went right to radiation. My surgery was on 2/5 and I started rads today. My radiation oncologist wanted to make sure I was well healed before starting anyway. The most frustrating part of all of it was a week of extra, unnecessary waiting for that oncotype score. It's tough to not have your plan solidified.

    I hope your score comes back quickly and you can have your plan in place. That will help.

  • Falconer
    Falconer Member Posts: 1,192
    edited March 2018
    Same thing happened to me. Someone didn't get insurance to approve it so they wouldn't release the info. The waiting is terrible; for me it decided if I went back to work or not. I finally started rads about six weeks after surgery. No chemo.

    So sorry you're going through this! Hope you have a low score.
  • Bec-Ky
    Bec-Ky Member Posts: 216
    edited March 2018

    Great.. It came back at 22! Ugh I'm waiting to see what to do.

  • operamom1
    operamom1 Member Posts: 40
    edited March 2018

    I'm glad your results came back, Bec-Ky. I'm sorry you're facing an intermediate score. I hope you're able to get some clarity in order to make a decision that is comfortable for you!

  • gkbuser
    gkbuser Member Posts: 348
    edited March 2018

    Bec-ky dont worry it wont effect anything. My radiatin MD at a large comprehesive cancer center reassured me that as long as it was started within 12 weeks. I had a small fluid accumulation. So please dont worry, you have plenty of time.

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited March 2018

    Ugh, intermediate scores are so stressful. Just tell us if you want advice, a lot depends on your ER + percentage and family history.

  • Bec-Ky
    Bec-Ky Member Posts: 216
    edited March 2018

    No family history....

    40 years old

    Er/hr+ her2-

    Tumor was 1.9cm

    0 lymph node involvement

    I'll take all the advice in the world! Doc appt tomorrow (March 22) at 440.


  • Loki
    Loki Member Posts: 21
    edited March 2018

    Bec-Ky- I just joined the site recently but have found the experience of others so helpful. Most important thing is there are so many of us to ask questions and learn. I am not one of those yet....a newbie. But....I also understand the uncertainty is stressful as I just went through that waiting and all that goes with it. I think it will be your choice but it seems the doctors recommend chemo for the intermediate Oncotypes. According to NCCN guidelines there is option to do or not do chemo. And you are young. I am 62 with St1, T1c - 1.6cm IDC, ER, PR+, Her2-with Oncotype 29. I had lumpectomy and was recommended TC chemo x4 and Radiation x20, then Aromatase inhibitors.Ask lots of questions. I highly recommend talking with. Social Worker- there is one at my center that really is helpful. Maybe not reassurance ( Sorry) but experience of others and knowledge is what helps me so far.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited March 2018

    B, You might want to ask your MO about getting the mamma-print test.

  • Bec-Ky
    Bec-Ky Member Posts: 216
    edited March 2018

    Ok... So here it is!

    If I do nothing except radiation my chances of cancer coming back are 21%

    If I do radiation and take tamoxifen (an estrogen blocking pill) for 5-10 years, my chances are 14% recurrence.

    If I do chemo, radiation, and tamoxifen my recurrence is about 8-9%

    So...although there is a very high chance already of no recurrence... I am going to go ahead with chemo just to make sure I'm doing all I can. I have 2 wonderful girls (and of course 3 stepsons) and a great husband and family and awesome friends.... And I would hate for cancer to come back and feel like I never did everything I could. Yes, it can still come back anyways... But at least I'll have the peace in my heart to know I tried and did everything I could.... Rather than regret!

    All good... I'll make this the best I can!

    ❤️

  • Loki
    Loki Member Posts: 21
    edited March 2018

    Bec-Ky- I’m glad you made your decision- your attitude is great! I had the same sort of thought process- I know there are no guarantees but I don’t want to look back and regret my choices. I plan to start TC next week- I am scheduling later todaywhen do you start?

  • Bec-Ky
    Bec-Ky Member Posts: 216
    edited March 2018

    I'll start taxotere cytoxan? Sp* next week as well! That's TC right? I don't have the exact dates but doc said right away or early next week! Just emailed him my decision last night.

    12 weeks.

  • KBeee
    KBeee Member Posts: 5,109
    edited March 2018

    I highly encourage you to jump onto the chemo boards and join the thread for the month you start. The friends I made on those threads were my sanity savers in so many ways, and I am good friends with many of those gals to this day.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited March 2018

    A decision made is a step in the right direction! Best wishes for an easy chemo ride:) For what it's worth, it was not as hard for me as I thought it would be...ditto what KBeee said.

  • KBeee
    KBeee Member Posts: 5,109
    edited March 2018

    My chemo was not nearly what I had feared either. It did not peg the top of my fun meter, but I did just fine, kept working my part time job, and pretty much bulldozed through with huge fatigue as my biggest issue. My biggest piece of advice is that when people say, "what can I do", give them something to do. People feel helpless and WANT to help. By allowing them to cook you a meal, vacuum, fold laundry, you are helping them and helping you. Win-win. And it gives you a brief time to see them and be social, which is always helpful.

  • operamom1
    operamom1 Member Posts: 40
    edited March 2018

    It’s good you found clarity to make your decision. I would have made the same one

    I hope your treatment goes well!

  • Bec-Ky
    Bec-Ky Member Posts: 216
    edited March 2018

    Thanks for all the reassurance!

  • Optimist52
    Optimist52 Member Posts: 302
    edited March 2018

    Hi Bec-Ky sorry that you find yourself here. My Oncotype score was also 22 and my MO was adamant that chemo wasn't warranted. My new MO agreed when I asked her too, both said the risks outweighed the benefits.

    My mitotic score was 1 (meaning slow growing). Is yours on your pathology report? The Mammaprint test may be helpful for you, giving a high or low risk score, no intermediate. Best wishes with these difficult decisions.

  • Bec-Ky
    Bec-Ky Member Posts: 216
    edited March 2018

    Mine was grade 2....so not slow growing, but not aggressive.

  • chronicpain
    chronicpain Member Posts: 385
    edited March 2018

    Bec-Ky, it sounds very reasonable for you to do the chemo. You are young and otherwise healthy, have kids, and both intermediate onco and intermediate grade. I would likely make the same decision with those facts.

    I hope you have not too unpleasant therapy and no recurrence!

  • Bec-Ky
    Bec-Ky Member Posts: 216
    edited March 2018

    Thank you. As these few days go by I am more and more comfortable with my decision.

    I just really hope everything goes well and I'm able to keep working (I work at a hospital in a surgery area... Caring for admitting people for surgery and caring for them post op for outpatient day surgery as a CNA) I only have 10 weeks left of fmla because I took the first 2 for my lumpectomy surgery. And now I'm faced with 12 weeks of chemo.. Plus 3-4 weeks of radiation.

    I have intermittent leave set up so I can get off as needed... I just hope and pray it's not a lot. Otherwise I lose my job.

    Plus side... It's just part time at 20 hrs a week.

    Thanks everyone for the reassurance. Xoxo

  • MO-Beth
    MO-Beth Member Posts: 84
    edited March 2018

    Bec-Ky, I'm so sorry you're having to deal with all of this!

    I didn't have to go through chemo, but I did go through radiation. I just want to say about the leave/days off issue, I was able to work at my regular full-time job all through my radiation. I have a sit-down job, so I was not on my feet as you will be, but I didn't require any naps or anything during radiation. So maybe if you're feeling okay after chemo, you may not have to take off during your radiation. The way mine worked, the radiation appointments were scheduled every day at basically the same time of day, at a time best for me, and the schedule was mapped out ahead of time before I even started the radiation so I knew when my appointments were and I was able to schedule around them.

    Saying my prayers for you that you just sail right through this all and move on with your life.


  • Loki
    Loki Member Posts: 21
    edited March 2018

    Bec-Ky- Yes TC is Taxotere and Cytoxan- I start Wed the 28th. Same as you- 12 weeks-4 cycles every 3 weeks. Really scared but hope it will go okay. I’m grateful to all the postings to hear how it has gone and how people coped. Amazing women - I certainly don’t want to have cancer but am thankful to meet great people. I am hoping to work through this too.

  • Bec-Ky
    Bec-Ky Member Posts: 216
    edited March 2018

    Loki - we start the same day... That's awesome! I'll definitely be checking up on you!!!! ❤️

  • MO-Beth
    MO-Beth Member Posts: 84
    edited March 2018

    Loki, you too...saying my prayers that you sail right through this all too! Ugh, I just can't wait until this is over for you guys.


  • Loki
    Loki Member Posts: 21
    edited March 2018

    Bec-Ky-As much as I am not looking forward to this, it will be great to go through this at the same time. I am concerned I may be postponed as I am not feeling well. I’ll keep you posted. Positive thoughts for you for Wednesday!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2018

    Becky,

    I was diagnosed last September. Also with a IDC 1.9 cm, no node involvement but grade 3. We did the Mammaprint and I fully thought I was going to NOT have to do chemo. Mammaprint comes back either as "Low" or "High" Risk. Mine was "High Risk." Sigh. But, I completed my TC chemo in January and radiation was done two weeks ago. I got through it and you will, too!

    I also have two kids (ages 14 & 11) and I want to do everything I can to be here as long on this Earth that I can.

  • Bec-Ky
    Bec-Ky Member Posts: 216
    edited March 2018

    Lizabeth - I'm not a jealous person.... But I am now! So jealous of those who are done with chemo! 😂

Categories