ER/PR positive and Her2 negative and Ovary removal
Hi all,
In 2019 I was diagnosed ER/PR positive and Her2 negative and mastectomy done on right side. No chemo, no radiation
I am 45 and this month I was diagnosed with ER/PR positive and Her2 negative on left breast. Dr suggested mastectomy, later they decide Chemo or radiation.
I have been hearing more about removing Ovary if it is ER PR positive. Removing Ovary can eliminate Hormonal therapy means no need to worry about meds like Tamoxifen. And also it will drastically reduce chances of ER / PR positive kind of tumor in future.
Anybody out here whose has gone through this kind experience.
I am 45 and have 2 kids so do not care much ovary at this stage of life. My Onco says no need to remove ovary so confused and not sure what to do.
So, I am seeking opinions, suggestion from others if anybody has any.
Comments
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Hi @tdpan2023 , I’m sorry you are dealing with cancer again in the other breast. Removing your ovaries would not mean that you could stop hormone therapy. Some women remove their ovaries or suppress them medically so they can take aromatase inhibitors instead of tamoxifen since these meds are a bit more effective. AIs have side effects similar to those of tamoxifen, however. I hope treatment goes well for you.
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tdpan2023, I have elected to do an oophorectomy in December, after getting zoladex injections for about 8 months. My cancer is ER/PR + but HER2 -. I am doing aromatase inhibitor not tamoxifen, and I was premenopausal, so the zoladex was my option in order to do the AI. Now I cannot do tamoxifen due to a conflict with another medication I take. But, as I get closer to the surgery, there are days when I worry about it - I have no plans for kids, but something about organ removal sometimes seems drastic to me. But on the other hand, its becoming a bit cumbersome to do the injections every 4 weeks.
My main worry about it comes from the longer term side effects like heart disease, osteoporosis (my DEXA scan showed I already have osteopenia), and memory issues, and whether they will be more severe with the ovaries removed.
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Hi @tdpan2023 -
I was dxd in 2003 at age 47. I elected to have an oophorectomy so I could take Femara (Letrozole) instead of Tamoxifen, due to it showing better results. Even with an ooph, you will likely still need an AI. It is a personal decision and YOUR decision, so if it's something you want to do, you will need to advocate for yourself if your onc isn't in agreement. I was happy with my decision as I was then 'safe' for almost 20 years until being dxd again in 2022. The surgery itself was easy for me compared to other surgeries. It does throw you into menopause and people have different symptoms related to that. I figured I would eventually get there anyway and might as well just do it.
Good luck with your decision and once you make it, it is the RIGHT decision for you!
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HI All, thanks for responses and well wishes. It gave some of solid input and information for me to move forward.
Some updates, I talked with another onco and he suggests to shut down ovarian production using shot- Lupron and then AI(aromatase inhibitors). My onco stopped Tamoxifen as it was not affective and wants me to wait until surgery so they can see pathology report of tumor on left breast then decide which meds to start.
My surgeon told me it will be too much to take out breast and ovaries in one operation, it will be too much shock to my body. I was thinking let's get it over it with one surgery but Doc may be right. I do not wanted to these cycle again and again.
I am looking for more quality life and I had lot of problem with tamoxifen which I have been dealing with 2019. I am not sure what kind of side effects AI will bring to me. I wish it will not be as ruff as I have experience with tamoxifen. I trust god and he will look after me this time.
Anybody out there who has smartly dealt with AI side effects? Please chime in.
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Hi @tdpan2023 , Some people have no side effects or minor ones on AIs but others have bothersome ones. There are three AIs: anastrozole, letrozole and exemestane. If one causes big problems switching to another one sometimes helps. Also, different brands of the same AI can affect a person differently. There are meds that can be given to help alleviate some of the side effects like hot flashes but I would be lying if I said that everybody finds AIs tolerable. Your doctor's advice not to undergo two big surgeries at once is wise. You could have Lupron injections initially and an oophorectomy later on to avoid the monthly shots.
When your pathology report is back and you have your appointment about next steps be sure to ask your oncologist what he could do to help with potential side effects. You might be one of the lucky ones who doesn't get them but you want to make sure your doctor will help you stick with the meds to prevent another recurrence. Good luck with all the upcoming decisions.
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I have been on anastrazole for nearly 10 months now, with monthly zoladex injections. Later this month I'm doing the oophorectomy.
I have not experienced bad side effects from the aromatase inhibitor other than some hair thinning at the front of my head, above my bangs - which I really hope doesn't get worse. The menopause symptoms have not been too bad - the usual (though now less frequent) hot flashes. I never really considered tamoxifen because the AI made my distant recurrence percentage a few points lower, so I just went with that.
Good luck with your decision and treatment.
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Hi I just got my HER2 FISH result and said it was negative.. I'm ER/PR+.. I'm scheduled to meet with my onco on May 2nd.. can someone please help me understand what this ER/PR+ HER2- mean? I'm really scared to use Google now. I feel like I'm having anxiety attacks everytime I get any kind of results and searching the net just keeps on making it worse
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@lotsof_hows - Welcome to Breastcancer.org. We're sorry you have to be here, but so glad you found us and decided to reach out.
We totally get how scary all of this can feel. Lots of new information and terms are not easy to understand. We actually have two really helpful articles on our main site that explain what ER/PR+ and HER2- mean in a super clear and easy way:
What do hormone receptor test results mean?
What is HER2-positive breast cancer?
They’re a great place to start and much gentler than Googling. Hopefully they help you feel a bit more at ease before your appointment. In the meantime, let us know how you're doing. We're here for you!
The Mods
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Hi @lotsof_hows, When you are diagnosed there is a steep learning curve. Breast cancer is a very variable disease so general googling gives you lots of irrelevant information. The Mods referred you to some helpful articles but here is what can be gleaned from the details you provided in your post.
HER2+ means you have too much of a growth protein driving the cancer and are generally treated with chemo and targeted therapy. When your biopsy sample is initially analyzed by a pathologist you are classifed as HER2-, HER2+ or HER2 equivocal (both you and I had this designation.) In that case it must be sent for a FISH test to see if there are extra copies of a gene which produces HER2. Both of us got negative results which means we don't have to deal with that type of chemo or targeted therapy.
ER+/PR+ means that estrogen and progesterone are driving cancer growth. Depending on tumor size a sample can be sent for an Oncotype test which will look at genes and predict whether chemo would be beneficial for you and a percentage estimate of how much anti-estrogen therapy (tamoxifen or aromatase inhibitors) will help prevent the breast cancer recurring in 9 years. In general patients with hormone positive breast cancer are prescribed anti estrogen meds (sometimes radiation, targeted therapy also.) Your individual course of treatment within this category depends on tumor size, whether lymph nodes are positive, type of surgery (lumpectomy or mastectomy), your age, whether you are menopausal and any other medical conditions you have. That is the discussion you'll have with your onco. It is helpful to bring a relative/friend with you to take notes due to the information overload at that first appointment.
Hope this helps. All the best.
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@maggie15 thank you for your reply.. may I ask how are you doing and where are you now in terms of treatment?
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About four years ago I was diagnosed with a 3.2 cm ER+/PR+/HER2- (FISH) tumor, had an oncoplastic lumpectomy and sentinel lymph node biopsy with one lymph node positive. Chemo wasn't needed and I underwent whole breast and axillary radiation. Currently there is no cancer evident but I'm still undergoing treatment for a rare complication from radiation and being monitored for suspiscious lesions. My life isn't quite the same as it was pre cancer but I'm happy to be here.
Every situation is different. Many people get through treatment without problems or with temporary treatable issues. Hopefully things will go well for you.
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