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libby2002
libby2002 Member Posts: 41
edited June 2019 in Just Diagnosed

Hello all -

I have just been diagnosed with breast cancer:
ER + / PR +

HER2 -

It is at least 3cm, at least 1 node involved.

I will be getting neoadjunctive chemo, surgery, radiation, and hormone therapy.

Has anyone had good long term results from all this?

I am feeling very lost

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  • Moderators
    Moderators Member Posts: 25,912
    edited May 2019

    Hi there libby2002, 

    Sending you a warm welcome to the BCO community. We're so sorry to read about your recent diagnosis and we know this is a really confusing and difficult time but we're glad that you found us as others here will understand what you're going through. 

    Others should be along soon to offer their experiences and advice but in the meantime, you might like to check out some other relevant threads and information in the links below:

    Getting prepared for surgery

    Tips and a shopping list for getting through chemo

    Hormonal therapy forum

    Please feel free to contact us via pm at any time if you need help/have questions, we're always here to help. 

    Sending hugs to you,

    From the Moderators. 

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  • KSteve
    KSteve Member Posts: 486
    edited May 2019

    Hi Libby - Although I had a different type of breast cancer, I followed the same path that you are about to undergo. I can tell you that this is without a doubt the scariest part of your journey. Dealing with the emotions of the diagnosis, fear of the upcoming treatments, will they work, etc. The best advice I can give you is to take it one day at a time and breathe. Easier said than done, I know. But once you get fighting (begin treatments), you will begin to feel a little more in control. It takes time and allow yourself to feel whatever you're feeling along the way. Accept help from those who offer which can be tough. Continue to communicate with others in your situation, this site is an amazing source of support (and venting when necessary). I am approaching 9 years since I was in your footsteps. In many ways it feels like yesterday and in some ways it almost feels like it never happened to me. You can do this! Sending you virtual hugs,

    Kathy

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  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2019

    libby, are you getting an oncodx test?

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  • libby2002
    libby2002 Member Posts: 41
    edited May 2019

    they do not do the oncodx 22 in Canada.

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  • stayingpositive2019
    stayingpositive2019 Member Posts: 31
    edited May 2019

    Hi Libby,

    I am sorry that you have to go through this. This is definitely a scary time but you can do it. Just a small blip on a long life. I agree with Kathy, just take it one day at a time.

    I am also from Canada, and although the test is not performed in Canada, your oncologist will request the test if you meet the criteria. Based on your diagnosis, I would think they would do the oncotype.

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  • moth
    moth Member Posts: 4,800
    edited May 2019

    libby - I'm in BC and I had the oncotype DX test done. Each province has slightly different criteria for who qualifies for it. They might not want to do it because the point of the test is to determine if chemo is beneficial and with a positive node, they'll want to do chemo anyway so it may be pointless from that perspective.

    more people survive breast cancer than don't, so the odds are with us! If you want to look at probability statistics, the Predict website is very good. You will need to know the grade of your tumor (which should be on your pathology report). You can put unknown in Ki67 because most Cdn labs don't report it.

    https://breast.predict.nhs.uk/tool

    May the odds be ever in our favour :)

    Keep coming back here if you like - there are loads of very well informed and supportive and kind people to help you out.


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  • libby2002
    libby2002 Member Posts: 41
    edited June 2019

    as my cancer had nodal involvement they opted not to do the oncotype. However, they said I could pay for it out of pocket if I so desired.


    I was kind of thinking of maybe getting BCI done if it wasnt too much.


    Then again. . . If I found out really negative info it might make things worse.

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  • moth
    moth Member Posts: 4,800
    edited June 2019

    I think sometimes the provincial plans will not cover oncotype if they feel it won't change the recommended treatment plan. If they're planning to do chemo anyway, you can sort of see their thinking. Otoh, for me, getting the oncotype changed my treatment so I'm glad I had it done. Originally they thought I was more strongly ER+ and were just recommending TC x 4. After oncotype, they did AC + T as I came back as essentially triple neg. I am *very* glad we did the oncotype as I'd worry that we under treated my cancer. Fwiw, I'd want to know if it's negative info because then they can be more aggressive now and hopefully hit it hard & fast in the early stages.

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  • Beesie
    Beesie Member Posts: 12,240
    edited June 2019

    libby, I'm in Canada too. Ontario. Just as moth said about BC, the guiding principle here in Ontario is that the Oncotype will be done if the results will be used to guide and/or change the treatment plan. It won't be done if, based on the pathology or other patient factors, the results won't change the treatment plan.

    With your very young age, the relatively large size of the tumor, and the nodal involvement, even if you had a low Oncotype score, I suspect that there aren't many oncologists who would not recommend chemo anyway. Additionally, what I learned from my Oncologist is that although Oncotype scores come with general population risk estimates, Genomic Health have a separate computer model (Oncotype RSPC, Recurrence Score Patholgy-Clincial) that they make available to MOs that adjusts the risk estimate based on the patient's age, the size of the tumor and the grade of the tumor. I suspect in your case, even a low score would end up with a recommendation of chemo once these factors were applied. Based on that, there is effectively no value to the Oncotype score since it will be over-ridden by your age and the pathology of your cancer.

    Hope you are doing well and tolerating chemo without too much difficulty

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  • libby2002
    libby2002 Member Posts: 41
    edited June 2019

    Yes, it's true. I have a pretty intense diagnosis, so a pretty intense plan would probably be inevitable.

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  • libby2002
    libby2002 Member Posts: 41
    edited June 2019

    @moth I have tried the NHS predict test and I think I have to wait until my pathology is back so I'm not 'guessing' at stuff and scaring myself.

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited June 2019

    Libby, I had a similar diagnosis to you (a bit worse actually) and had the neo-adjuvant treatment that is planned for you. I’m just coming up five years and recent scans show I have no evidence of the disease. Hope this helps.


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  • libby2002
    libby2002 Member Posts: 41
    edited June 2019

    Hi traveltext,


    Thank you for your response and reassurance. I appreciate it. Why was yours rated 3b with its smaller size (2cm) and only 2 nodes involved?

    Libby

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited June 2019

    Mine was 3B because it was Inflammatory Breast Cancer, an aggressive cancer. No oncodx either.

    I honestly think your treatment plan is perfect. People here often say things like, "great, I don't have to do XXX", but I reckon a full treatment is warranted for someone of your age.


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  • libby2002
    libby2002 Member Posts: 41
    edited June 2019

    yes I'm glad we're doing all we can and honestly wish we could do so much more

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