Low estrogen level, no progesterone

[jebhope]

I am new to this group and have metastatic breast cancer, diagnosed in May, 2017. My original liver biopsy found no estrogen so we assumed I was triple negative. A recent bone biopsy found estrogen but the level was low, less than 20%. Is anyone being treated with Ibrance and Faslodex despite having a low level of estrogen? The alternative is to assume the cancer is triple negative and treat with capecitabene.

[Snowcone16]

My estrogen was 50% and the progesterone zero. The dr was between “cape” aka xeloda or fulvestrant aka folsadex. 3 opinions went with fulvestrant until my molecular sequencing report comes back.

My background: diagnosed at 44 yo w stage 2 in April 2016. Lumpectomy and radiation. Oncotype said I had 15% chance recurrence potential. It was reduced by 1-2% if I chose chemo. I did not go that route. Did tamoxifen.

January 2018-spread to bones. Meds:

February to current: zolodex to induce menopause and xgeva for bones

April to August: Ibrance/letrozole spread to liver - extremely small: couldn’t biopsy

September to November: Afinitor/exemestane more liver growth w lesion measuring 11 mm. Successfully got biopsy but wasn’t easy!!

And now fulvestrant. We just did a new biopsy of liver. Dr said I might be TNBC now. Said that there is a lot of research focused to that right now. Will also send tissue for molecular sequencing.

[pinkypop in reply to Snowcone16]

hi , i do'nt have breast cancer but suffer from mastalgia due to excess estrogen and progestrone which puts me at a high risk , can faslaodex lower plasma /serum progestrone levels too , i know it;s a pure anti estrogen-what can be used to lower progestrone - pls reply

[PrestonParker]

Have you been tested for the BRCA mutation? I have mets to lymph nodes, bones and liver, Dx 11/2018. I am 0% PR; 3% ER; 0% Her2. My original Dx in 4/2015 was 2 TN tumors and 1 ER/PR + tumor which spread to lymph nodes. I had surgery, ACT/Carbo chemo, & rads. Ovaries removed bc I am BRCA +. Took Exemestane since 1/2016. My treatment now is a PARP inhibitor (Talzenna) + Fulvestrant shots (to take care of the estrogen that’s still fighting through).

[PJBinMI]

I've not been in the position that you are but I have a suggestion. If you have not gone to one of the major cancer centers and seen a bc specialist onc, you might really benefit from doing that, at least for a second opinion. Your own onc should support that. The top cancer centers in the US are the Comprehensive Cancer Centers, and those are listed on the website of the National Cancer Institute. Those CCs have specialized oncs who see patients and do research. Most of them offer second opinion evaluations, and they are generally totally up to date on the latest research and thinking about treating mbc. I was diagnosed with bone mets from the get go in March 2004 and am still here nearly 15 years later. The meds for bone mets (bisphosphonates (Zometa, Aredia) and Xgeva have been huge game changers for those of us with bone mets. Besides strengthening the bones, they are thought to help the bone mets heal. Though I've been in treatment constantly for over 14 1/2 years, I've never had symptoms from the cancer itself. No pain! I am lucky, but there are more and more of us living over 10 years all the time! If you can find a local support group for women with mbc, that can be hugely helpful. Meeting others face to face, women who totally "get it", really helped me calm down about this lousy rotten cancer.

[PLASEM in reply to PJBinMI]

It is good information thanks, I have a health insurance HMO that does not allow me to go to the comprehensive cancer center I will see how I get a second opinion

Because I had a lot pain on my lower back and pelvis I got an MRI and came inconclusive it said that maybe there are new sites they are little ones that shows reconversion of the bone marrow that is what the medication does I am taking Ibrance Falsodex and Xgeva they said because my PET CT and previous CT came negative it is not metastatic on my pelvis and my lumbar site and they will do another CT on March i have bone breast cancer metastasis thanks and God bless you

[PJBinMI in reply to PLASEM]

You could try calling the closest Comprehensive Cancer Center and asking if they have experience getting your HMO to cover second opinions! When I've called the CCC where I got a second opinion, they folks there have been really knowledgeable about things like that. Most big cancer centers have people on their staffs who know about resources and about dealing with insurance. I wonder if your HMO has specialist oncs within their system.