Anyone ER-/PR+ out there?

Miller1353

It is hard to find people like me who have had er-/pr+ breast cancer! If you are, I'm interested in what your onco said about treatment. Are you on an AI?  Are you treated more like er+ or triple negative?  

GirlPowerDebbie

You were reading my mind!  And your diagnosis is so similar to mine ... I would have been stage 1 instead of stage 2 if my tumor had been 2mm smaller. 

My path reports say ER-/PR+, HER2-.  I have a strong family history.  My onc questioned the path report, had me do the oncotype test which came back inconclusive.  In my treatment, because of my history, we "erred on the side of caution" and I had TAC x6 and radiation. I finished radiation March 6.

I recently requested copies of my medical records as I am changing to a new gyno - and I requested copies of all my surgeons and MO records.  Interesting reading ... I always took good notes and I do not remember hearing the words come out of her  mouth, but in the file it refers to her suspicion it is really triple negative. 

I am BRCA1- for the family mutation (lost a niece to BC 4 years ago).  Her sister was just diagnosed with stage 3 ovarian cancer.  I am seeing my new gyno Thurs and requesting surgery to have my ovaries and tubes out (I am post menopausal). It is so hard to catch ovarian cancer early and I am scared to death ... I feel like they are ticking time bombs in my body. 

And YES, I am on Arimidex.  What is the game plan for you?

Debbie

Miller1353

Thanks for responding. I am a mixed bag...I, too, am BRCA1+.  I had no family history of BC prior to diagnosis. Last year, a paternal cousin matched my mutation.

 I had a BMX and hysterectomy. I was thrown into menopause with chemo (4 DD A/C, 4DD Abraxane), so the hysterectomy was no big deal.  I am in the middle of DIEP reconstruction. I have had three surgeries and should finish this summer.

 The oncologist's opinions have been confusing. Initially, she said that she was sure that I was triple negative. I, too, tried the Oncotype because I was 1% er+, but I did not get a result. I gladly went the chemo route, because the BRCA1+ finding was so unexpected and scary. She said that an aromatase inhibitor would likely not do anything for me.

After chemo, I asked about going on an aromatase inhibitor.  She flipflopped and said that it could not hurt so I went on Arimidex. Was allergic to it, so I switched to Aromasin. Aromasin was so expensive that I switched to Tamoxifen. I'm lucky that I don't have many side effects.

Do you have children? I have two teenage girls. I really worry about them being BRCA positive.

 Dawn

GirlPowerDebbie

Hey Dawn ... lots happening here, and then we wait.

First off, to answer your question I have 2 sons - 25 and 19.  My pride and joy!  The 25 year old is in Japan, he is in the navy.  The youngest is a freshman at Ohio State, a music major.  I am married to my best friend, we will be married 29 years this Dec. 

Went to the new gyno today and laid it all out.  He agreed with losing the ovaries & tubes, and we also talked hysterectomy.  I have my reservations since it holds things up, and I have had no issues there.  And you at least can have a pap smear.

So, we schedule the ovaries & tubes surgery for 5/31.  I call my MO & talk to the nurse, bring her up to speed.  She calls back after talking to my onc who recommended a) further genetic testing, and b) if it were her she would get the hysterectomy too.

I believe the genetic testing will look for other mutations, not just the familial mutation for which I was negative.  My onc is also treating my niece with ovarian cancer, so she has more insight. 

I will probably get everything pulled - uterus, tubes & ovaries.  Anything I can do to reduce recurrance risk is in the right direction.

Did you know that even if you have your ovaries out you can still get ovarian cancer?  A 1.7% risk, you can get it in the peritoneal lining. 

My brain is tired from this day.   I just want this all behind me.

Take care ... Debbie

birdgirl

Hey ladies, I am ER-PR+Her2- as well. I carry a BRCA 1 mutation as well. However, only 5% of my tumor showed PR+ the other 95% triple negative (my doctor also did not highlight this, I figured it out myself). My team started my treatment with chemo, my MO is also recommending hormonal therapy although he also says it is not likely to do much due to the small amount of the tumor that responds to PR. I have done some research and it appears that my tumor type is more like TNBC than ER+ bc. On the plus side, research also seems to indicate that women with a BRCA mutation fare better than women with sporadic TNBC.

 Laura

Alicethecat

Hi everyone

I am ER+, PR negative and HER2+ and the docs seem to be throwing the whole caboodle at me:

. FEC x 4

. Taxotere x 4 with Herceptin starting in round two and continuing for a year

. Radiation x 3 times a week for a month

However, although I had DCIS and a large IDC tumour, there is no spread to the lymph nodes or blood...No increased calcium or alkaline phosphastase markers in the blood either...

I am wondering whether there could be something about our type of diagnosis that could have positive elements.

Best wishes

Alice

Miller1353

I guess if there is something positive, it would be that they allow me to take aromatase inhibitors due to the pr+ status. It may not do much good, but I feel better knowing that I am taking something that might ward off recurrence or mets. The side effects are minimal and the cost is affordable.

Alice, be glad they are hitting you with everything.  I only want to do this once. I'd rather hit it hard initially and know that I did everything I could to keep this at bay. I'm almost three years out. I'm 46, and I have a lot more living to do. I have two teenage girls who need me, although I'm not sure that they would agree.   I opted for a BMX and hysterectomy because I am BRCA+, too. Leave it to me to have all the rare stuff. 

GirlPowerDebbie

An update ...

I did 2 months of Arimidex and I hated it.  My legs hurt so bad.  I took myself off for 3 weeks and felt like a new woman.  Back to the MO for follow up, and she put me on Tamoxifen.  Since my last visit to her I had my ovaries & tubes out.  Based on quality of life issues, I decided against the hysterectomy.

I said, if I am ER-, why take these drugs?  She said the best response to AI and Tamoxifen type drugs are ER+/PR+.  Second best response is when one is negative, one is positive (like us).  If I take the Tamoxifen it improves my mortality rate by 7%.  Not insigificant, so I am now on my 4th day of Tamox.  It would be silly not to, and she told me the Tamox does not have the bone loss concerns of the Arimidex or Femara which are both in the same family of drugs.  I already have some bone loss before starting any of these drugs, so that is a plus for me. 

At least that is what I took away from our conversation.  I pushed pretty hard and she made a convincing case.

All the best to you!

Debbie

stride

Hello, just found this thread. I am ER-, 20 percent PR+ and Her2-. I have been skeptical of this result from the start.

I had neoadjuvant TACx6. Went really well the first two rounds, then the tumor started growing. My BS thinks I may have two kinds of cancer in there--one that responded to chemo and one that did not. She also thinks the ER could be a false negative or the PR a false positive. I'm having surgery in a couple of weeks, and I am looking forward to getting the pathologist's report and seeing what is in there.

Did any of you do neoadjuvant chemo? If so, what kind of response did you get?

I find it interesting that three of you have BRCA 1 mutations. My oncologist suggested the cause of my cancer is most likely genetic, possibly passed down silently through my father's side. That side of the family is mostly boys. I have to go back to my father's first cousins to find a family history of breast cancer. I have not had any genetic testing done.

stride

Forget everything I wrote above. Final pathology report shows I am triple-neg.

Gaynelb

Hi girlpowedebbie, or anyone who can help me.I've been trying to find others with my diagnosis. I'm 44 years old. In March of this year I was told I had triple negative bc. Fortunately my oncologist changed and I was informed by the new oncologist that my progesterone is slightly elevated 1.2% so I'm border line triple negative. I did the neoadjuvant treatment 12 rounds taxol and carboplatin, FEC X4, bilateral mastectomy which reveal chemical was only 50% effective, 1 node positive, clear margins. By the way I'm brca negative. Plan is radiation, xeloda to follow for 6 months then tomoxifen.

A few questions for you. Did you have a Mirena iud, did you do neoadjuvant therapy, did you have any residual.

GirlPowerDebbie

Paula -

I never had any type of IUD.

I am 58 years old and was thru menopause when I was diagnosed. I have a family history of BC but I am not BRCA positive, although my sister and her 2 girls (1 deceased, the other is 4 years into ovarian cancer) are BRCA positive. Her third daughter is NOT BRCA positive.

My treatment was 6x TAC (taxotere, Adriamycin, cytoxen. I then had radiation. After chemo & radiation, I was on Arimidex for about 6 months, did not tolerate. Switched to tamoxifen, did that 3 years and bailed out of that with my onc's blessing. For me it was totally a quality of life issue.

I had a lumpectomy, tumor was 2 cm with clear margins and no positive lymph nodes.

I am 5 years out from diagnosis. My lingering side effects are neuropathy in my right leg (taxotere) and severe chemo brain, which I attribute to the Adriamycin. My older sister is 72, she had Adriamycin when she went through treatment for BC 35 years ago. Her memory, recall and ability to keep up with details are shot. I guess my biggest complaints, 5 years out, are the neuropathy and chemobrain.

But I'm here, and this is the new normal. Adapt and overcome! I have grandbabies now, and a demanding job where I use my brain a lot. Every day is a gift.

Debbie

AGlimomom

Just found this thread. I am also ER-/PR+/HER2- Stage 1A, 1.4 cm, IDC 0/2 lymph nodes. My biopsy said I was mildly positive at 10% and then after my lumpectomy the pathology said the tumor was low positive at 2%. My MO is treating it as triple negative and chose chemo. When I initially saw my surgeon, he thought that I would need only radiation.

I was shocked to hear that I had to have chemo, but I don't want to take any chances.

I never used an IUD and only used hormonal contraception for about 15 months.

Any advice would be appreciated. I will start chemo AC in mid March and then Taxol after that.

secondchancetoo

I too am estrogen - progesterone +. This is my second primary. Initially I was told I was triple negative. I find it interesting that my receptors changed from my left to my right breast? I am in my mid 60s, I have no interest in chemotherapy.

Petrea

In June 2005 (I was 44 years old) dx with ER+ 75%, PR+ 20% HER2 - Very small tumour (1 out of 19 lymph nodes positive) and pathology report said possible vascular invasion. I had mastectomy, chemo, radiation, tamoxifen until I had ovaries removed then an AI - they hit it with a big stick. Everything went well for just on 12 years, then 28th December, 2016 I found a lump just above my collarbone. I knew what it was straight away. Onc thought I was going to be triple negative this time as the biopsy came back ER-negative 0% (he wanted to get me into a trial) but further testing showed I was PR+ >50% which surprisingly was higher than first time around and still HER2-negative. Tests, tests and more tests, ultrasound, MRI, CT scan, PET scan showed the cancer that had been sitting dormant all that time had started to grow in the supraclavicular lymph nodes above my collar bone and also in the internal mammary lymph nodes. It hasn't spread anywhere else. However, this time they can't operate because the tumour is tucked behind my collar bone, they only have a small safe dose of radiation left they can use and radiation oncologist wants to save it for when the benefits outweigh the risks. He's waiting to see how the chemo goes, so far they've given me 12 weeks of NabPaclitaxel which didn't shrink the tumour as hoped, and just this morning I've started on Xeloda. Anyone else taking this chemo tablet? Onc says hormone therapy won't work this time because I'm ER-negative 0% I was sceptical too about being ER-negative, PR-positive but they say that's what I definitely am. Sounds like some of you that are PR+ only are on hormone therapy ie. taxoxifen. Onc is off to the US 1st June and said when he comes back he's thinking of putting me on Flutamide a hormone drug they use to treat prostate cancer. Anyone heard about this? I'd be very pleased to hear how more of you are going and what treatments you're on. Seems like there's not as many options for us as for those who are also ER-positive. Anyone else similar to me? I'd be really interested to hear from you.

Petrea

Hi there, I too was 44 when first dx (I was ER+, PR+, HER2-). I'm now 56 and just had a recurrence in December 2016 (this time around I'm ER-, PR+, HER2-). I am being treated more like triple negative than hormone receptor positive because I'm now ER-. Oncologist says hormone receptor like tamoxifen of no use to me this time. He tried me on NabPaclitaxel 12 weeks which didn't work and I've just started Xeloda this morning (3 tablets in the morning and 3 at night). I'm wondering how you went on this drug? Love to hear from you. Also have you been offered hormone therapy or any other drugs?

Apologies I've got a couple of posts now very similar, one after the other. I'm still getting the hang of how to do this. Please bear with me.

Mishka3265

I was originally diagnosed as triple negative at the age of 30. No family history and tested negative for brca and other genes linked to BC. I had my biopsy retested at John's Hopkins and turns out I'm 50% PR+. I did neoadjuvant chemo, as they treat PR+ the same as triple negative with regard to chemo. I had a 1mm residual tumor. I was not a candidate for xeloda as they said my residual tumor was too small. Now my MO wants me to start tamoxifen,as she believes I will benefit from it.