Advice on Prosigna

RoslynTRoslynT Member Posts: 4

Hi,

I was diagnosed on the 1/11/17 and currently going through the choices of treatment.

Can anybody give me any information on the test Prosigna?

I have had the surgery (lumpectomy) and seen the oncologist who has recommended this test and if I chose not to have it, then I am lining up for chemo for 3 months starting asap and then radiotherapy for a further 2 months. If I have the test and it comes back with a result that they say chemo is not necessary then I think I will always worry the cancer will return because if I didn’t have the test due to the cost or other reason, I would be having the chemo. Is it like an ‘insurance policy’ to just have the chemo anyway?

I have done Dr Google and wasn’t able to find out any accuracy rates, or % of cancer returning after not having the chemo or even at what % they recommend chemo to go ahead and is it a personal choice of the test result % accepted to not go ahead with the chemo? Or does the oncologist then decide?

Really hoping someone can advise me.

Thanks Roslyn

Comments

  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 1,174
    Hello @RoslynT
    sorry that you have need to join us.
    we are a supportive bunch of people who are different stages in this roller coaster ride.. One none of us every wish to join but we do..
    I’m not sure what you are asking about.
    Do you know what type of breast cancer what stage etc.....

    do you have a breast care nurse?
    do you have a my journey kit?

    Dr Google is not very reliable....

    if if you type in 

    Prosigna in the search bar on here in the discussions tab page on top right side any discussions about it will show up.


  • DeanneDeanne Sunshine Coast QldMember Posts: 1,879
    Hi @RoslynT
    I am sorry I did not have the Prosigna test but putting it into the search bar as @SoldierCrab suggests would be the best way of finding out about others experiences with it.

    When asked, your oncologist can give you general statistics based on your particular cancer pathology. Of course no one can actually tell you for absolutely certain whether chemo will help you stay cancer free. I imagine the test you are talking about will give you more accurate information about how effective chemo would be against your type and grade of cancer.

    I went with chemo as the general statistics for people with pathology similar to mine gave a 17% difference. This meant that for every 100 people with my type, stage and grade of cancer 17 more would stay cancer free if they had chemo. My oncologist broke down the statistics according to each of the treatments (surgery, chemo, radio and hormone therapy) that I could have. I found this helped me to understand how each treatment could improve my situation. Everybody will be different according to their individual pathology and there are no absolute guarantees.

    Wishing the very best with whatever you decide.
    xxx
  • RoslynTRoslynT Member Posts: 4
    Thanks for replies, I have IDC, stage 1 , grade 2, HER2 negative, Oestrogen positive (2+ 90%) and Progesterone (1+ 10%) positive. They removed 2 lymph nodes and no cancer in either. I understand the reason for the oncologist suggesting chemo is due to the HER2 result and that they did not get the cm clearance around the tumour, in fact in a large area only got a mm clearance.
    really wanting to know others experiences in having had the test and their decision based on the results and now later, would they have done it differently. I feel I am too emotional at the moment to make good sound decisions.
    thanks Roslyn
  • primekprimek Broken HillMember Posts: 3,308
    So will you be returning to get a better clearance as I thought that was standard? . Offering the test is often helpful for women on the borderline of chemo especially if the stats look like only 1% but if test is positive then you know you should go ahead. If you feel you should have the chemo regardless then do so without the test.  If you don't want to (like none of us want to) but want to be able to make a more informed choice then go ahead if you can afford it.  I doubt I've helped you, sorry. It isn't easy. Kath x
  • RoslynTRoslynT Member Posts: 4
    Hi Kath
    thankyou for the post, I agree it really is hard especially when at the appointments they give you all the info, I can't think quick enough as they always seem to give me news that I am not expecting. It wasn't until I was at the oncologists that I was told of the less than satisfactory clearance and now need to be asking the surgeon why they aren't taking more. I have very small breasts anyway and they had to attach what is left to the muscle, the surgeon really didn't want to do a mastectomy. But thinking that may have been a better option as what is left also hurts like mad.
    thanks for your support. 

  • PiccmePiccme Member Posts: 33
    Hi @RoslynT,

    It is difficult enough to make a decision regarding treatment let alone when you are feeling emotional. My diagnosis was a little different to yours. I was stage 2b IDC, 90% oestrogen +, 10% progesterone +, HER 2-. My medical onc strongly recommended chemo. I was extremely reluctant. I asked for genome testing to be done. I originally enquired about the Oncotype DX test however it is not validated for pre-menopausal patients. I chose to pay the $3000 for the Prosigna test however my Oncologist didn't want to wait for results (it took 10 business days) and chemo was started. At the time my thinking was that the information would still be useful. I thought that if it came back that I was low risk then I could stop chemo early if I was unable to cope with the side effects. On the other hand, I thought if it came back as medium risk then it would assist in making decisions re duration (5 or 10 years) of hormone therapy. I was not prepared for the results. The Prosigna test showed that my tumour was high risk with a 41% chance of distant reoccurrence in ten years. I felt like I had been diagnosed anew. Personally, I wish I had not bothered to have the test, to waste that much money on a test that actually didn't and now won't change my treatment. Your situation is different. The test may well show that you are low risk and that you may not benefit from chemo. However, if you are feeling that you may regret not doing chemo and chose to proceed, please know that this network of amazing ladies can offer candid advise, support and even some humour along the way. So many of these ladies helped me while I was in active treatment.  No one wants chemo but as you may well read amongst many other posts here chemo is doable. If I had to make the decision again, for me, I wouldn't take the test. I should have invested in my future and taken a bloody holiday instead! If you have any other questions about the test please don't hesitate to message me. Sophie
  • RoslynTRoslynT Member Posts: 4
    Hi Sophie
    thank you so much for your thoughts. Over the weekend I have decided to go back to the oncologist with a list of questions and have an appointment tomorrow, hopefully she will give me more time and answer all the questions I have. Thanks Roslyn
  • primekprimek Broken HillMember Posts: 3,308
    Great idea. Now being small breasted they may be able to do mastectomy with immediate reconstruction. It is something you could ask about if they can keep the nipple. If they can't it might be something you'd prefer to look at later. I know...more choices but if you need further surgery for clearance you may as well have the discussion. I had it done at first surgery but couldn't save nipples.  I'm having them reconstructed next year. 
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