Wife = Er+ Pr+ Her2- Options besides hormone therapy?

jabberwocky57

My wife will be visiting a surgeon next week. We believe it was caught early. From what we've read, a SERM would be the usual course of action (after surgery). We've read about horrible side effects from those medications that might last over many years. Would opting for a double mastectomy mean not having to do the hormone regulating drugs? Is that a reasonable option? Do most women deal with join pain and bone loss if they use an SERM?

ElaineTherese

Hi!

Opting for a double mastectomy is not a substitute for homonal therapy. Surgery is not a systemic treatment; it merely removes the existing tumor. There's no guarantee that your wife doesn't have microscopic cancer cells in her bloodstream or lymph system. She certainly doesn't want them to land somewhere else (liver, lungs, bones, brain, etc.) and set up shop. One way to address these remaining cancer cells is hormonal therapy, which seeks to starve these cells of the estrogen that was feeding them.

I have been on Aromasin for three years. I do not have joint pain, but I have developed osteoporosis. However, there are ways to treat osteoporosis; I get a shot of Prolia every six months. My quality of life is fine; I work full time and parent high-maintenance sons with autism. Hormonal therapy doesn't always have terrible side effects. Best of luck to you and your wife!

jabberwocky57

Thank you! I very much appreciate that perspective, and it's good to hear that you do not feel the joint pain.

Cpeachymom

Jabber- not all hormone treatment are equal. Tamoxifen is actually good for bone building IF you are already menopausal. Aromatase inhibitors are hard on your bones either way. The ovarian suppression drug Lupron is also bad for bones, but you only need that if you’re premenopausal. I’ve only been on Tamoxifen for six months, but I have zero joint pain (at least that wasn’t already there before!) I chase around a toddler all day. There are many people on these medications who are not suffering from them. I hope your wife is one if that is the path she takes!

etnasgrl

Please don't put the cart before the horse and try to write off hormonal therapy before even having surgery. I know that you are concerned for your wife and worried about her future......but try to slow down and tackle one thing at a time. Hormone therapy is the last stop in this cancer parade, so you have a ways to go before you need to be thinking about it.
That being said, there is no substitute for hormonal therapy. Regardless of what type of surgery your wife has or doesn't have, hormonal therapy will still be prescribed. 
You will read countless horror stories about hormonal therapy, but that is because those who experience side effects are pretty vocal about them, looking for relief, answers, and support. Those who are doing well on hormonal therapy have nothing to vent about, so you don't really hear a lot about them. However, they are out there. Doing well.
I've been on Tamoxifen for 2 years now and doing fine. I have a few side effects.....hot flashes, night sweats, and hair thinning.....but NOTHING major. No joint pain, no bone loss. Nothing that would cause me to stop taking it.

When the time comes for your wife to be on hormonal therapy, my advice would be that she try it. She may be one of many who do quite well. And if she's not, than she can decide if she wants to continue on them or not. Writing them off before even giving it a shot is unwise. They help prevent a recurrence down the road and as a breast cancer survivor, that is my number one goal! (As I'm sure it's your wife's as well.) 

gb2115

Have to jump in here that mastectomy does not at all remove the need for hormone therapy. Hormone therapy is preventative for metastatic spread, which would be super bad to have happen. Because of my age I take tamoxifen, and have been on it for 1 year with tolerable side effects. I'm thankful every day for a pill to take to lesser the chances of this stuff showing up in my bones someday. You will read horror stories on the internet (you can find a horror story about everything and something to fear about everything in life). I recommend taking all of that with a grain of salt (unhappy people are more likely to share their stories---which is why I like to come on here and say that it's been ok taking the meds), try it, and if it doesn't work out, then she can discuss stopping. But most people really do fine on these drugs.

Sorry about your wife's diagnosis. Hope the surgeon's visit goes well!

beach2beach

For as many people who have unbearable side effects, there are many who experience doable ones and some don't notice anything at all. I've been on for 6mths and so far very doable. It's just one of those things that you don't know until you try.

Good luck

jabberwocky57

Thank you all for the info. I'm very heartened to hear about such good experiences with the SERMs etc. Do the hormone suppressing drugs diminish the need/benefit of a hysterectomy or removal of ovaries? The physician who gave us her lab results mentioned that this might be another option as well.

Cpeachymom

Lupron yes. Iwasn't sure I was ready to be done having children. So ovarian suppression put me into chemical menopause. I'm not positive, but I suspect it's supposed to be a stop-gap measure. There are people who do the whole 5years with OS as well though.

gb2115

I think tamoxifen can. In my experience anyway they are not touching anything in there, I am just taking the pills. I am 39 and very much premenopausal. That said my OB made an off hand remark about if she "gets an excuse she will take it all out.". I didn't ask her to explain at the time because I knew my MO is following standard of care and I am comfortable with that.

letsgogolf

My sister and I are both on Arimidex and neither have any side effects. She has taken for more than 2 years and I nearly 1 year. I know quite a few people who are also taking this drug and have heard zero complaints.

Sophiemara

Hey, yeah hormone therapy is usually used after surgery to reduce the risk of recurrence for ER+ breast cancer. I'm not sure how old your wife is, but hormone therapy in terms of tamoxifen or ALs are used to prevent systemic estrogen from circulating in the body, if premenopausal then they usually add zoladex or similar to shut down the ovaries which release estrogen.

Hormone therapy has shown to reduce recurrence significantly, it does of course come with side effects which vary from person to person. In my experience nothing that can't be managed though. I'm 37. ALs do have a habit of reducing bone density over time, but they also are shown to be most effective..it's really a case of weighing up the risk. To prevent bone density loss a lot of onco use bisphonates now as well.

Complimentary ways of reducing estrogen include losing weight (the less body fat the less estrogen), maintaining weight, avoiding alcohol, exercising (proven to reduce estrogen) avoiding animal products that contain natural estrogens (dairy, red meat), plastics (mimic estrogens), just look up estrogen dominance for tips, but I would never do these things in place of hormone therapy but additional.

Being dx early there is always the likelihood that she might not have to be on hormone therapy for more than a few years, although her onco will advise.

The risk of not doing hormone therapy is that it could come back and not necessarily local in the breast. Double mastectomy prevents it recurring in the breasts but unfortunately not in the distant body.

A hysterectomy is another option, but it won’t prevent menopause side effects and although it prevents estrogen from the ovaries etc, it doesn’t prevent systematic estrogen. So likelihood would still be to have hormone therapy I would have thought. The fact is estrogen has many benefits in a normal situation including protecting bone density but once you take it away, the body will be more susceptible to density loss

jabberwocky57

Thank you, all of you, for sharing your experiences. It has been very enlightening! I feel it gives us a greater sense of perspective going in.

swg

Your dr will still probably have her do the hormone drugs--Tamoxifen if she's pre-menopausal. I suggest you make sure your surgeon does oncotype testing on your tumor.

Your treatment will depend on many factors.

What stage are you given, AFTER surgery?

Did the surgeon get clear margins?

Were any lymph nodes affected?

In my case, I decided NOT to take any drugs after my unilateral mastectomy. To me, the risks weren't worth it.

There's a calculator that shows your risk of recurrence given your stats.

When I ran it, my risk WITHOUT meds is 8 pct. WITH meds, it's 4 pct. But..Tamoxifen can cause uterine cancer and all kinds of side effects such that, it'll get reported in the stats that you were cancer-free, but you end up dying of something else the drug caused.

I'm not doing it.

Instead, I'm reading up as much as I can about the effects of nutrition and following whatever the guidelines are. I work out 3 times a week and eat at least 5 fruits and vegetables per day. I stay away from processed food. I stay hydrated. I take a spoonful of flax seed in the morning. I eat broccoli sprouts and other cruciferous veggies that are proven to have an anti-cancer effect.

There is so much you can do, if you catch your cancer early enough..besides meds.

swg

Also there's a book I recommend. "What Your Doctor May NOT Tell You About Breast Cancer" by John R. Lee, M.D.

GET THIS BOOK.

Very important.

It talks about the importance of progesterone with ER+ tumors--I've done some research on this, and progesterone suppresses tumors. It's why ER+/PR+ patients tend to do better over time.

There are ways to balance your hormones, and getting saliva testing to determine her hormone levels would be crucial.

Best of luck.

Lula73

I had horrible all over joint pain, brain fog, memory issues, moodiness, fatigue, and incredibly greasy skin on tamoxifen. I was also allergic to it & had to take a Zyrtec everyday to counteract it. I had my ovaries removed (high risk for ovarian cancer from genetic testing) and switched to Femara (an AI). Only my left pointer finger and left ankle & foot have some minor joint stiffness in the morning that goes away within 30 minutes of getting up & moving around. I have VERY minor to no brain fog/memory issues anymore, more energy and less moody. And my skin is normalizing. The oophorectomy surgery was an easy one and really didn’t have any pain from it. I combined it with the stage 2 DIEP flap (natural tissue) reconstruction surgery. I joke that I have the breasts of a 20 year old and the estrogen level of an 80 year old! You have many options to choose from with the anti-hormonals. Everyone responds differently and your experience with one may be very different than your experience with another. And you won’t know how you’ll respond until you try them.

Jons_girl

Hi Jabberwockey57:

You haven't shared what your wife's diagnosis is....so I am not sure if she has a aggressive tumor or what her situation is.

I might get stomped on here by some.....because I at this time in my life am not personally a proponent of taking any med treatment. That's just where I am now.Perhaps I am the only one in this forum that caught my cancer at 3-4 mm. My cancer was IDC stage 1A, grade 1 PR+ and ER+ HER2-. My grandmother was on Tamoxifen for years..... I didn't want to take it when I found out I had br cancer. When I searched on the net I couldn't find really any documentation on stage 1 tumors and the best treatment for tumors that are slow growing and low stage tumors. I had very low proliferation rates on my tumor. I asked my med onco doctor why would I need to do radiation? Why would I need to take tamoxifen? I was seeing studies but most if not all of them were stage 2 or higher. It seems that very little in the way of studies have been done on women like me, with small tumor and very low proliferation/growth rate.

He agreed. He said well I am fine with that if you decide to do neither treatment. As long as you come back to see me often. So I am doing that. I am very good about getting repeated diagnostics. I plan to have a MRI in June (see my doc every 6 mo now). I have been having ultrasounds. But I think after reading stories here, that MRI is the best diagnostic, especially if the woman has dense breast tissue like I have. I found my tumor in May with surgery early July. All is clear, margins and 0/2 nodes.

My onco surgeon also thinks I will probably be just fine. So it isn't just my med onco doctor agreeing with me.

I am trying to exercise daily when I can. My diet is probably strange to mos (no meat, dairy and limit sugar). I don't know if that will help me in anyway stay cancer free. I had a nurse practioner tell me that a onco doc told her that exercising daily for 30 min is as good as taking Tamoxifen. I have no idea if that is really true but I have heard that from more than just the NP. Whether any of this dietstuff helps I do not know....but just passing on what I have been learning.

Oh I forgot to add....I am a pre-menopausal 50 yr old.

So I want to encourage your wife to just do what she thinks is best. If she did catch her tumor very very early that would be great! I wish you both the very best!

Hope you both have a good evening.