Oncotype test

Pommy8
Pommy8 Member Posts: 128
Just wondering has anyone had the oncoytype test and told they don't need chemo as low % of cancer returning.
And the cancer has come back ?

Comments

  • Julez1958
    Julez1958 Member Posts: 1,101
    Hi @Pommy8
    I was never recommended the oncotype test as my own circumstances didn’t put me in the “ grey zone”.
    I had a large tumour that hadn’t spread to my lymph nodes ( “ big and dumb” said my surgeon”  so I was  recommended mastectomy , radiotherapy and hormone therapy but not chemo .
    All of these medical decisions are essentially a “ numbers game” and for myself I placed my trust in my ( extremely experienced) medical team.
    Years ago I had surgery for a detached retina and my surgeon said there was a 5 percent chance that it would detach again ( which it did)
    I remember my surgeon saying “ percentages are suddenly meaningless if you are the small percent”.
    I guess what I’m saying is there is always a chance cancer may come back no matter what treatment we have - but we live in a first world country with an excellent medical system so we should do our best not to anxiously think about what might be but rather try and get on with life and enjoy all the good things we have.
    Hope that’s not too “ Pollyanna”.
    Take care .🌺
  • Afraser
    Afraser Member Posts: 4,352
    Good comment by your surgeon, @Julez1958! I had a ‘one in ten thousand chance’ of a procedure going wrong (nothing to do with bc) -  you tend to assume that you will never be the one! My problem was fixable and was quickly fixed, but treatment choices are sometimes about knowing you’ve done all you can, rather than what is statistically imperative. It’s personal and individual, no ‘right’ answers. 
  • Tomobun
    Tomobun Member Posts: 16
    Hi @Pommy8

    I did Oncotype. It was expensive, but I needed to be told about the necessity of my chemotherapy with the scientific test results.
    The test takes 21 business days. I went back to work during this waiting time. That was a great time to give me a break from my breast cancer stress and focus on something different. I loved spending a few weeks of normalised life.

    I also think the experience going through treatment, especially AC, would be different if I did not see the test results. I would have had doubts about if I needed chemotherapy. Even though my oncologist is very experienced, he is only a human. No one is perfect. All the doctors have insurance.

    Please think about what is best for you. We are all different. 

    Wishing you a best 
  • Tomobun
    Tomobun Member Posts: 16
    Hi @Pommy8

    I forgot to tell you the previous comment. I researched academic sources and found the oncotype is accurate.
    My breast cancer nurse said that some doctors are trying to get medicare to cover the cost for cancer patients.
    Hopefully it will happen sometime. 
    She also mentioned that the number of Oncotype users is increasing.

    Test results show your possibility of recurrence. If it is under 15%, you don't need chemotherapy.
    If it is more than 15%, it will also explain how much chemotherapy is effective for you.

    Hope this information helps.
  • Pommy8
    Pommy8 Member Posts: 128
    I've had the test and thankfully I didn't need chemo.
    But wondering if anyone had been told they didn't need chemo and cancer returned.

  • Pommy8
    Pommy8 Member Posts: 128
    Reason asking I've now got a slight pain near where I has my breast cancerand scared it's returned .

  • arpie
    arpie Member Posts: 7,519
    edited December 2022
    @Pommy8 -  It is possibly just nerve pain as they 'reconnect' ..... but if you are really concerned - I think you should have a chat with someone & see if your Surgeon's appt can be brought forward (usually you see them 12 months after the surgery) - I know that my surgeon has an ultrasound machine in his rooms & always does one on me when he sees me (my 5 year check will be in Feb.)

    Do you have a breast care nurse?  Maybe have a chat to her - she may be able to get you checked out sooner than later.  Keep in mind that many/most surgeons have at least the first 2 weeks of Jan off on Holidays .... 

    My motto is:

    If in doubt, get checked out.

    Take care & all the best.

  • iserbrown
    iserbrown Member Posts: 5,539
    We can all offer reassurance but as Arpie said, if in doubt get it checked out

    Nerve pain is common, 7 years along and I still get pain in the affected breast

    Take a deep breath, monitor the discomfort,  where, when and how long it lasts and seek medical advice

    Take care
  • Julez1958
    Julez1958 Member Posts: 1,101
    Agree with above - if something doesn’t seem right get it checked out - if you have a breast care nurse I would start there .
  • Pommy8
    Pommy8 Member Posts: 128
    Ok thanks I'm scaring myself.
    It's mainly at night when I lie on my side..
    I'm prodding also can't feel anything.
    Just worried as had radiation now hormone tablet plus op to remove and oncoytype test saying no chemo as cancer so small 8mm.
    Finished radiation mid October and started hormone tablet 3 weeks later.
  • arpie
    arpie Member Posts: 7,519
    You'll be right, @Pommy8 ... just keep notes of anything that concerns you & raise them with the BC Nurse and/or Surgeon/GP when you see them. xx

    take care, Happy New Year

  • Brenda5
    Brenda5 Member Posts: 2,423
    Mine was 7yrs ago. Very agressive 2.5cm. I had a single mastectomy, no radiation as there was nothing left there to radiate and the consensis at the time was 15% value in chemo. I went for the chemo to make absolutely sure I never had to go through breast cancer again. So far it has worked.
    As to the pain, yes I have phantom oh my gosh that hurt, what was that, pains too. They don't seem to hang around and its fleeting so I figure its either nerve damage or since its the same side as my heart a bit of a twinge. I also have lymphodema since they took all my lymph nodes out of the armpit. Most of the time I can get away with just exercise and manual lymph drain massage but it sometimes backs right up to the tendon in the front of the shoulder which can radiate across the chest. None of my pains are constant though and while some can be acute and invoke a bit of Tourettes language at the time, its all good and goes back to my new normal.
  • Afraser
    Afraser Member Posts: 4,352
    Always check out something that’s nagging at you - not because it may be a problem, but because it is a problem as long as you fear it might be! Even at a difficult time of the year, making an appointment to get something checked can, in itself, relieve that all too common anxiety. As others have said, sudden twinges along scar tissue are quite frequent, years after surgery. Best wishes for a speedy resolution. 
  • Pommy8
    Pommy8 Member Posts: 128
    Went for ultrasound found a cyst so that's the pain but still waiting results .