OYE!!! Joining the Sisterhood and researching!
After my annual mammogram, I got a call from my primary care physician that I needed to go back in and get additional testing. While this was somewhat alarming I didn't worry too much. I religiously get checked every year since my mother had two instances of breast cancer and my heritage also puts me at a higher risk. I went back in and had an ultrasound done. Then the shocking news that I would need to have a biopsy of an area in my breast and a lymph node. So, again I had an appointment set to have that done and hoped for the best. No such luck... The biopsy came back positive for breast cancer ER+ PR+ HER-. And so it begins. This has already been quite a journey. A case manager from the radiology facility was terrific in helping me navigate the next steps and set up appointments for me with an MRI exam, oncologist appointments, and links to further educate myself. So, another area of concern was found on the MRI and today I went back for another biopsy. I had my first appointment with the surgical oncologist and have discussed the options. The one good thing I have in my favor is that this was caught early. I'm leaning towards bilateral mastectomy with reconstruction. The complication there is that I already have implants under the muscle and they would need to be removed. I have not found a lot of information about these procedures or outcomes. It is my understanding that the plastic surgeons prefer putting the implants above the muscle so I am not sure what the hurdles in my case pose. Also, the surgical oncologist that I have seen urged me to start taking aromatase inhibition medication before surgery. This really concerns me as I have had major spinal surgery and do not want to compromise bone health. I am 66 years young and I stay very active. has anybody tried alternative hormone inhibitors? I also do not know the results of the second biopsy that was just performed. This is so overwhelming… I pride myself on researching and making informed decisions.
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Welcome, @abbegugh-
We just wanted to drop a line to say welcome and thanks for participating in our community! We're so sorry for the reasons that bring you here, but we're really glad you've found us. We're sure you'll find this space a helpful, supportive, and informative place and we hope you come back often, engage fully, and get the support you need. We're all here for you!
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--The Mods
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Let me start by saying two things. First, I am sorry to hear of your dx. Second, these early days with flurries of appointments, too much waiting time and too many unknowns is the worst. Throw in the fact that most of us have discovered that bc is 100 times more varied and complex than we ever imagined and overwhelming doesn’t even cover it!
Your implant situation is probably less common but this is a discussion to have with your plastic surgeon. For many, many years implants for reconstruction were under the muscle (mine are). The shift to over the muscle has occurred over the last few years. There is a supplement called DIM that some women take in lieu of aromatase inhibitors but these are considered food supplements and have no FDA approval.
Have you had genetic testing? I am also an Ashkenazi Jew with a family history of bc. I have been tested for over 30 gene mutations. What came up? Bubkis (nothing)🤷🏻♀️! Take care and zei gezunt!1 -
@abbegugh - I receive zoledronic acid (Reclast) injections twice a year and have been in AI Leteozole since 2018. I have read a large percentage of people pass on AI or stop treatment early due to side effects, so you are certainly not alone in your hesitation. Your oncologist will run bone density tests and can discuss your concerns so you can way the risk vs the possibility of improved prognosis along with data to support the protocol/use of AI.
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Thank you for your responses!!! I have had blood taken for DNA testing. They test 70 markers! I won't know the results for a few weeks. I have an appointment with the medical oncologist on March 20th and a plastic surgeon on the 27th. Does anyone know if the type of estrogen and progesterone can be tested for? Or is it the levels of those hormones in your system that determines the receptors in the tumor? I guess I'm trying to figure out if the levels of the hormones correlates to the receptors. I might be confusing these two things so if anyone can explain this that would be extremely helpful.
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Hello, so sorry about your BC journey which brings you here, although here you are in the warmest of good company. Below are some details for you.
There's an available quantitative blood test for "Estradiol, Ultra-sensitive" at popular labs under CPT codes 82670 or 82679. It measures concentration of circulating estradiol in estrogen.
ESTROGEN-RECEPTOR EXPRESSION AND FUNCTION IN FEMALE REPRODUCTIVE DISEASE
"The cellular receptors of estrogen are crucial mediators of estrogen functions, which includes the nuclear receptor family (estrogen receptors (ER) alpha and ER beta) and membrane estrogen receptors (mERs; G protein-coupled receptor 30 (GPR30))."
"The physiology of estrogen and its receptors is especially complicated, as the history of estrogen-signaling mechanisms and systems originates more than 500 million years ago."
"Interestingly, it was believed that the actions of estrogen were activated via a single receptor discovered in 1962 [2] until another estrogen receptor with high homology was identified in 1996 [3]. Since then, the former was renamed as ERα and the latter ERβ. The third estrogen receptor was discovered and characterized in the 2000s [4,5], and was named the G protein-coupled receptor 30 (GPR30)/G protein-coupled estrogen receptor 1 (GPER)."0 -
ESTROGEN RECEPTOR QUANTITATIVE MEASURES AND BREAST CANCER SURVIVAL
"ER percent positive staining is not independently related to breast cancer survival after adjustment for other survival-related factors. ER intensity, in contrast, demonstrates promise for prognostic utility."ESTROGEN AND PROGESTERONE RECEPTORS: FROM MOLECULAR STRUCTURES TO CLINICAL TARGETS
NEW INSIGHTS INTO THE FUNCTIONS OF PROGESTERONE RECEPTOR (PR) ISOFORMS AND PROGESTERONE SIGNALING
Best wishes to you and all in navigating this complicated disease.
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Hi again @abbegugh,
How did your appointment with the oncologist go yesterday?
You received some great info above, but also we wanted to provide some info from our site that is easy to understand about hormone receptor status:
We hope this helps and let us know how we can continue to support you!
—The Mods
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The short answer is that I did not care for the doctor I saw the other day. I felt as though she was pushing Chemo, Radiation, and hormone therapy. I see the plastic surgeon on Thursday and hope to be able to get more answers, and hopefully, the Surgical oncologist (not the last medical oncologist) and plastic surgeon in the same room at the same time for a one-and-done bilateral mastectomy. I really need to sit down and organize some questions for the plastic surgeon since I currently have silicone implants in place under the muscle. I am open to suggestions from others on here on what questions to ask the plastic surgeon.
Thank you all so much for a supportive, informative space in this crazy beginning of my breast cancer journey.
P.S. Got my genetic test back and it is all negative! Thank goodness!
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