progesterone positive only

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phbr66
phbr66 Member Posts: 14
edited September 2016 in IDC (Invasive Ductal Carcinoma)

Is there anyone out there who has also been diagnosed as only progesterone positive? I'm going to oncologist on 13th, but don't even know where to start with questions, since so few women have this diagnosis and it seems like there is no research out there on it! Praying for discernment and understanding!

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  • phbr66
    phbr66 Member Posts: 14
    edited September 2016

    Ok, I will try a different question. Does anyone even know someone who was diagnosed progesterone positive only? This is sooooo frustrating! I hate being the oddball, it makes making treatment decisions so difficult! I am two weeks out of surgery with 1 of 3 nodes positive. I'm having major muscle tension/spasms at the reconstruction site. Still hard to take a deep breath and I know I have been doing too much, but soooo bored! I'm usually the caregiver, not receiver. Any advice would be appreciated. Thank you!


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  • Lisey
    Lisey Member Posts: 1,053
    edited September 2016

    I read a study that said this type of BC wasn't really true... Let me see if I can dig it up.

    Here it is... it shows that of the 1.5% of BC that are initially diagnosed as PR+ / ER-... that in fact most are ER+ http://jco.ascopubs.org/content/26/2/335.full

    Results showed that 20 out of 32 cases initially considered ER-negative as a result of the then applied threshold cutoff, were in fact ER-positive/PR-positive when 'any' immunohistochemical (IHC) staining was considered as a positive result. In the other 12 so-called ER-negative/PR-positive cases, technical failure was the main reason for this result. When staining was repeated with the above mentioned techniques, five were considered false-positive for PR, and seven were considered false-negative for ER.

    As a result of our reanalysis, we could not confirm the presence of ER-negative/PR-positive breast tumors in the period between January 2000 and February 2005 at the Leuven University Hospital when any positive IHC staining is reported as such. These results are similar to those reported by Nadji et al. They evaluated almost 6,000 breast cancers for ER expression by IHC analysis and found that all PR-positive cases were also ER-positive, reporting any positive staining result as positive.5 In contrast, Rahka et al did report 3.4% of breast cancer cases as ER-negative/PR-positive.1

    We do believe that the reason for low or negative IHC staining of ER in some PR-positive cases using less sensitive IHC techniques might be related to variables such as younger age, higher tumor grade, and HER-2–positive status. All such factors are well known to be associated with lower levels of ER expression as assessed by quantitative analysis of ER using real-time polymerase chain reaction.8,9

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  • MaineRottweilers
    MaineRottweilers Member Posts: 156
    edited September 2016

    I am PR+ but also HER2+. My local oncologist wasn't sure if AI would be useful in my treatment so I was sent to Dana Farber for a consult. My tumor was retested there and was still PR+ and ER- in fact if was more PR+ using their lab than the it was at the first lab. At DFCI, they told me that I would be treated as though triple positive because Progesterone is modulated by Estrogen levels.

    It isn't easy being an unusual case because you're never certain that something will work for you, there is little data to back it up. Whatever you do decide, get a couple of opinions. It will ease your worry, some, if you have a consensus.

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  • phbr66
    phbr66 Member Posts: 14
    edited September 2016

    Thank you for your responses and the article was very interesting! I am Her2 -. How long is the window to start chemo and such after surgery. I am very confused!

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  • MaineRottweilers
    MaineRottweilers Member Posts: 156
    edited September 2016

    Why are you upset with the surgeon? I may have missed something from your original post or introduction. Are you having a surgical issue? I hope you are healing well, slowing down just a bit, and taking it easy. Healing is vital to your well being.

    Your oncologist can request retesting of your tumor. The tissue will be banked for future use, it is customary. It will take a few days but should not delay or change your treatment plan in a meaningful way. You will receive chemo, or not, based on more factors than just being PR+ (grade and size of tumor, positive nodes and oncotype score, etc.). A few days or even a couple of weeks of delay in treatment will not likely be an issue. Many women spend time researching and deciding on treatments and some women are delayed by lack of surgical healing with no different outcome.

    If your oncologist is uncertain of how to proceed, a second opinion (such as I had) is imperative. It is unnerving being an unusual case mostly because the outcomes aren't as easily predicted, the treatment will not likely be changed much from the treatment if you were ER+.

    I wish you peace and healing.

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  • phbr66
    phbr66 Member Posts: 14
    edited September 2016

    My tumor was retested and now they are saying I am triple negative. Another consult with oncologist Friday. Let the fun continue!

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  • Lisey
    Lisey Member Posts: 1,053
    edited September 2016

    PHBR, that sounds about right. In every study I've read there is no true PR+ only.... so it was most likely a lab error.

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