Progesterone Positive, Estrogen Negative
 

I am finding very little information on ER- PR+ HER2+ pathology. In fact, what I have read is the fewer than 2% of all breast cancers fit this pathology and that PR+ isn't considered a breast cancer subtype.

There is controversy about whether PR should be tested for at all because it doesn't appear to be significant. So, my real question is should I bother with Arimidex given the side effects. Is it going to be useful? I intend to have this conversation with my oncologist on Thursday but I would like to go in armed with any information I can find. I'm looking for articles, trials or anecdotes. Thanks!
Tracy

Re: Progesterone Positive, Estrogen Negative
 

Hi. I am PR negative and ER 5%. About a year ago that was considered negative but now is considered low positive. When my medical onc wanted me to start Femora I deferred until my questions were answered. Major side effects with little or no good at my level was the general information so we are in similar boats. I asked my questions and there were no answers forthcoming. In reality, there are so few of us there are no answers. All the research shows low positive (I can't tell if that includes ER negative and PR positive but I think it does) show they live longer on average than ER/PR negative. Funny thing, not a single article said "if you take an AI" but I assume that is what they meant. In the end it comes down to deciding if you are willing to suffer the side effects on the (unlikely) chance it will do some good. There are many on this site who want to know they tried everything they could before waiving the white flag and others who value quality of life much greater than quantity. I finally decided to give it a shot so my family would know that I tried everything I could but also knowing if the side effects are too tough, I can stop it and hope the side effects dissipate. I have been on Femora for about 3 weeks. So far ankle stiffness at night which makes those 1st steps on the way to the bathroom tough, knees ache as I climb stairs which I use instead of an elevator, and 1 or 2 night hot clammies (my term for sort of a mild hot flash & night sweat combined).
I don't know what you will decide but think of your values and do it the way that is right for you. I do wish there were some clinical trials or studies that could use folks like us so someone would benefit from our efforts.

Re: Progesterone Positive, Estrogen Negative
 

The bigger issue is that in some staining, especially to determine ER status, 2/3 s of ER negative but PR positive tumors are actually ER positive, even if only a little bit. As such, aromatase inhibitors work well on PR positive tumors. Since your bc returned in the bones, you should definitely give an AI a whirl. They may very well help you tremendously. If they don't and you have side effects, you can give it up. Can you send your slides elsewhere for a pathology look?

I am 50% er positive and PR negative. I sent my slides to Sloan Kettering and they said my tumor was 50% ER AND 30 % PR. Who knows but big cancer centers probably make less mistakes since they do the test so many times in a day.

Re: Progesterone Positive, Estrogen Negative
 

I did a bit of Researchbut Becky gave you an excellent answer. It seems that Er-/PR+ is a very rare subtype and not always reproducible.

There can be ER+/PR+ and ER+/PR-. It seems the first kind responds considerably better to anti-hormonal treatment. At first it was difficult seeing any info about the treatment of ER-/PR+ with antihormonal drugs so I went to pub-med and put "treatment of progesterone positive breast cancer in the search box. If you look at the 10th entry there is a statement at the end of the abstract that says" ER-/PR+ breast cancer responds better to antihormonal therapy than ER+/PR- breast cancer. It seems an Aromatase Inhibitor is acceptable treatment.

Paul

Re: Progesterone Positive, Estrogen Negative
 

If you have any links to the research on Ai inhibitors for ER neg but pr+ I'd love to read more. Thank you.

Re: Progesterone Positive, Estrogen Negative
 

So Cal Girl

I had a frustrating time trying to get any info from the internet per say about treating ER-PR+ breast cancer. I went to PUB MED
and put treatment of progesterone positive breast cancer in the search engine. There was one abstract that had one sentence.
The sentence stated " ER-PR+ breast cancer responds better to hormonal therapy then ER+PR- breast cancer. I guessed they meant anti-estrogen therapy be it Tamoxifen, Arimadex, or Faslodex. Before reading this I assumed ER-PR+ would not respond to anti-hormonal therapy with anti-estrogen. That is logical but apparently not the case.

Paul

Re: Progesterone Positive, Estrogen Negative
 

Hi Maine,

I am also HER2+ ER- and PR+. I am HER2+++ - strongly HER2. My onc has me on HER2 treatment only. I got the Cleopatra protocol - Taxotere, Herceptin, Perjeta for 6 rounds, now on H&P only. It has been a good treatment for me - my oncologist said I had an "exceptional response." My PR+ was less than 5%, so I am planning not to worry about it.

Re: Progesterone Positive, Estrogen Negative
 

My oncologist decided that it was way out of his scope of experience and has referred me to Dana Farber. I will make the trip down there and see what they have to add. My visit is on Tuesday and I will see Erica Mayer. If anyone has questions that they think it would be useful for me to ask, please present. I will give an update when I return.

I did start chemo last Thursday: THP. I am scheduled for radiation on the 9th (x5 txs). Of course all that is subject to change once DFCI has their say. PET scan was clear of visceral metastases. I have lesions at C6, T10-11 L2 and L4. I almost danced for joy with the PET results.

Re: Progesterone Positive, Estrogen Negative
 

Hi Maine Rotweillers,

Ask the DF people what they generally recommend for folks who are HER2+, ER- and weakly PR+

Thanks!

Re: Progesterone Positive, Estrogen Negative
 

I will do that, you can be certain.

Re: Progesterone Positive, Estrogen Negative
 

Tracy,
Glad the results of your Pet scan were good. Hoping your visit to Dana Farber is enlightening. I'm sure you'll be in good hands.

Take care,
Brenda

Re: Progesterone Positive, Estrogen Negative
 

Alright, TMI here,

Tumor: invasive ductal carcinoma, NOS
Grade: Histologic grade 3
Lymphovascular invasion: not identified

Estrogen receptor: Negative (allred score = 0)
Progesterone receptor: Positive (allred score = 3)
Her-2/neu: Positive/3+
KI-67: Approximately 40% of cells staining

I'm a non-believer so I try to not use terms like evil etc. But I have to confess to wanting to use words like that and even worse when I read the pathology description of the tumor in my wife's right breast.

The grade of the tumor was 8. We still haven't received the pathology report from the bilateral mastectomy. We do know there is lymph node involvement.

Re: Progesterone Positive, Estrogen Negative
 

My trip to DFCI was mildly disappointing. It's a nice enough place, runs like a well oiled machine but people may as well be cattle there. I am really glad that I am not taking treatments there.

Dr. Mayer was very pleasant but super clinical. She spoke at a very high level, any sixth grader could have followed her conversation. It was extremely disappointing, I went there ready to talk research and treatment on a much deep level. Sje didn't offer any real insight or novel information. There's nothing "in the works" no one is working on or looking at this pathology. She remarked that Her2 cancer is not uncommon (no kidding) but the ER-/PR+ aspect is not common (yes, that's why I am HERE!). She said it's not well researched and not understood if it's significant. DFCI is in the habit of treating it as ER+ and if it responds, great and if it doesn't then go off the AI. She thinks, because I am am not weakly positive, that it would be a good idea to have an oophrectomy and get on Arimidex as soon as I can take chemo break.

The best take away from the trip was the discussion about my cardiac function. During the year and half I was in remission, my EF dropped significantly so it is now borderline 50%. She referred me to a cardiac oncologist to start working on repairing and protecting my heart since we all know that long term use of Herceptin is my future.

Definitely worth the trip but not the enlightening, detailed conversation I had hoped to have.

Re: Progesterone Positive, Estrogen Negative
 

Sounds like a real disappointment - surprised and upset for you. We hear so much about Dana Farber....

Hang in there, there's got to be something in the works for clinical trials, etc.

xoxo
Janis

Re: Progesterone Positive, Estrogen Negative
 

Tracy,

Dang, how disappointing that your trip to DFCI didn't give you the information you had hoped for. Sounds like the doctor gave you information that you were pretty much already aware of. As you pointed out, there was some value in the trip so that's the positive.

I'll keep you in my thoughts and prayers and visualize your MUGA percentages increasing. Can't hurt, right

Take care,
Brenda

Re: Progesterone Positive, Estrogen Negative
 

Was your tumor tissue ever tested by Foundation One or anyone else? Did you have Mammaprint or other testing done? There might be more to understand about your unique mutation.

I looked into this a bit as PR+ was deemed to be an anomaly in most places I looked. I did see that it can be related to one not metabolizing progesterone well and having a build-up of unfavorable levels of progesterone metabolites in the body.

Having had experience with uterine fibroids in the past and studying the premises of John Lee about using natural progesterone during perimenopause sort of started my understanding but as I learned about fibroids I read that sometime progesterone causes them to grow and not just excess estrogens.

I think there is more to understand about why the body doesn't process progesterone well.