Can Hormone receptors change?

KimD
KimD Member Posts: 30
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi all,

I had a biopsy and DCIS dxed in 4/11. They took 10 core samples and only tested for ER and PR.  I was ER+ and PR-.  I decided to do watchful waiting.  I then had a biopsy in 11/12 and this time they said I have ER-, PR+ and HER2 + DCIS.  Biopsy was on same 4 cm area.  Can hormone receptors change, can I have more than one type or could this be a dyslexic typo?  Biopsies were done by different doctors/hospitals/path labs.

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  • Rhiannon78
    Rhiannon78 Member Posts: 33
    edited March 2013

    Hi Kim: I have heard that hormone receptivity can change from biopsy to the final surgical pathology report. From what you write, it sounds as if you have not had a surgical excision or lumpectomy in order to confirm your diagnosis as well as to confirm the grade and type of DCIS? If not, I urge you to have this done so that your exact situation and extent of DCIS can be determined (and to confirm that there is not a "hidden" invasive component).



    In my case, it turned out that the area of my DCIS was quite small and the grade was Grade one. The surgeon acheived wide margins and no further treatment (rads or Tamox) is recommended. the surgery was not difficult nor painful, and my recovery went smoothly.



    I am very relieved to have it out and know that for myself, until they have a way to determine which kinds of DCIS might evolve into invasive cancer, I would not have wanted to watch and wait. If am not mistaken, I think that ER-/PR+ is fairly rare, so I'd also want certainty around that. Did they say that the area of the calcs had increased based on a follow up mammo?



    Good luck and take care!

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  • april485
    april485 Member Posts: 3,257
    edited March 2013

    Hormone receptors can change. Your body and your lesion is constantly evolving/changing and depending on where they took the cores from in the area, there can be differing ER/PR from what I understand.

    FWIW, I agree with Rhiannon. DCIS can turn serious and you never know when it will and as such, I would have it taken out of your body asap. I know some people opt not to and that is your choice, but IDC can and does hide in areas of DCIS and 4 cm is certainly not small. Best to you whatever you decide!

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  • KimD
    KimD Member Posts: 30
    edited March 2013

    Thanks all for your answers.   My surgery is scheduled for March 26. The radiologist that compared my mammos is the person who said the area of calcifications had spread/grown.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited March 2013

    EVen in cases where we are taking hormone inhibitors the hormone status of a cancer can change and over a period of 10 years cancer can outsmart the need for hormones to grow so constant monitoring is always needed - sorry to be gloomy but its important info for all of us

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  • Alicethecat
    Alicethecat Member Posts: 535
    edited March 2013

    Hi Kim

    I have the same stats as you - ER-, PR+ and HER2 + DCIS. In addition, they were both grade 3.

    About five years ago when I was 45, I was offered the chance to have a mammogram. I declined. Fast forward to 2013 and I was diagnosed with DCIS and IDC.

    I often wondered if I had had the mammo and got diagnosed with grade 3 DCIS whether I could just have had a lumpectomy and radiation.

    A mastectomy, chemo and rads became my treatment in 2013.

    In my humble opinion, if you have the opportunity to have the DCIS taken out and treated, I would do it now, especially as you are also HER2+ as it is aggressive.

    Good luck with your decision!

    Alice

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  • Rhiannon78
    Rhiannon78 Member Posts: 33
    edited March 2013

    I'm glad that you will be taking this out.

    Good luck with your surgery and please come back to let us know how everything goes.

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