High risk...tamoxifen?

Anonymous

High risk...tamoxifen?

NJgirl2018

Hi all.

I know this has been discussed quite a bit in the forums but i'm looking for specific experiences of others and how they came to their decisions on whether to start tamoxifen or not. I'm 43, just had my first mammogram in December of last year, which has then spiraled into multiple mammos, ultrasounds, a core biopsy, an MRI, and ultimately an excisional biopsy because they "just didn't like the way it looked" even though the tests were mostly negative. I just got back my pathology from my excisional biopsy (which was last Friday) and while I don't have a copy of it, my BS called me and told me it was "good news" but then mentioned ADH and that she wants to refer me to a medical oncologist to discuss starting preventative medicine (which I presume is tamoxifen). She has a different definition of good news than I do, I guess. I'll get a copy of the results next Wednesday at my post op follow up.

My questions--how have people made the decision whether to take tamoxifen or not? According to the gail risk model (I think that's what it's called), I have a 6.5% risk of cancer in the next 5 years and a 43% lifetime risk. Not small numbers, really. But everything I read about tamoxifen sounds awful. Hot flashes? I already get night sweats and can't imagine it being worse. Weight gain? I'm already heavier than I have ever been. Headaches? I already have migraines. Fatigue? I already feel like I need naps all the time. I am also still on birth control pills, which I assume I would have to stop (since what's the point of taking estrogen if you're also taking anti-estrogen), which means I will need another birth control method; probably an IUD (blech). I also take zoloft for anxiety and I can NOT imagine my life without it and I see that many doctors feel that only Effexor or Pristiq are safe with tamoxifen. It just seems like such a mess and will make my delicate balance that I sort of have right now all out of whack. But then again, I dread the thought of mammos/us/mri's every 6 months and always finding something they want to biopsy or test. I'm already over that.

How did you make the decision of whether tamixofen was right for you?

pupmom

Your BS probably said it was good news, because she's undoubtedly signed a lot of death certificates for advanced bc patients.

My diagnosis is so different from yours, that I can't really answer your questions. I would listen to the doctors' advice, however. I've been on Tamoxifen and Aromasin for 8 years, with no serious side effects. There seem to be solutions for all your concerns, but since you don't even have cancer, it's a tricky problem.

Salamandra

A lot of the side effects from tamoxifen seem to depend on the dose. The higher the dose, the higher the percentage of women who have rough or intolerable side effects.

20mg is now the current dose for women who have already had cancer. Most of the women struggling with side effects on this board are talking about 20mg. (Though keep in mind that at 20mg, and even at the higher doses that used to be used, there were plenty of women who tolerated it just fine, and they are much less likely to post about). But studies are now supporting 5mg as being just as effective as 20mg for prevention. So it is possible that the dose they will recommend is lower than what you mostly see discussed here.

I think it would be good to go into the appointment with an open mind. Also of course keeping in mind that if the side effects for you are intolerable, whether your dose is 20mg or 5mg, you can quit.

I think the antidepressants are a really valid point though, and if the MO you speak with does not take your mental health as seriously as your physical health, it is worth changing doctors and/or looking for a psychiatric oncologist who deeply understands the interactions. For example, I used to be on Wellbutrin, which is counter indicated for tamoxifen. Because it uses a pathway that tamoxifen also uses, and there is a theoretical concern that in some women it might lower the efficacy of the tamoxifen. With a well informed doctor, I could understand the risks and decide to take my chances to continue on Wellbutrin, understanding that it might diminish the benefit of the tamoxifen. (So far I haven't, I switched to lexapro instead). I have no idea if it's the same type/level of concern with Zoloft, but the oncologist should either find out or refer you to a psychiatric oncologist who would know.

Even if you decide not to, or can't, do tamoxifen, I bet you're right that they'll recommend stopping the estrogen birth control.

FWIW, I love my Mirena IUD. Although it's hormonal, it's progesterone and not estrogen. It can apparently actually help with some of the uterline-lining side effects of tamoxifen. My oncologist doesn't love me using it (she'd prefer a non-hormonal IUD) but she admitted that that is based on general principles and not actually and validated studies demonstrating risk.

Also fwiw, I can see why this is bad news for you, but good news for your doctor. This means that you do not have to worry about metastasis (which is the aspect of cancer that can kill you) for now. That's great! But also, these are tough decisions with no clear right and wrong answers and that provoke pretty much all the kinds of life and medical anxiety to which we are susceptible. So that really super duper sucks.

Mymomsgirl

Njgirl it is a tough decision. I've been on Tamoxifen for almost 3 months with minimal SEs thankfully, of course that can change overnight. I've found the best dosage for me to be 10 mg in the morning and evening. I agree with Salamandra an appointment with an MO doesn't hurt anything. I'm not sure if you've done this yet or not but you might want to consider genetic testing for at least the 9 high risk genes, that information might be helpful with what you are considering.

I will say 2 years before my diagnosis I had a biopsy that was performed by a general surgeon and it was benign. Interestingly enough when my BS for my lumpectomy looked at my previous pathology report she was reading it and was like well...and gave me a look. In my opinion I think she thought something wasn't right with it. Maybe something she is seeing a lot of and then cancer pops up in a year or two. That is why I advocate that everyone go to breast centers when they can, even if it is a little further it is worth it.

Good luck and let us know where you land.

onceabird

I am 34 and high risk/ADH as well. I go to the MO next week.

While I am not currently on medication, I have PTSD and Bipolar/Depression, and was in treatment for 7 years. I would not trade good mental health for anything on earth, including lowering my risk of cancer, and I mean that seriously. I suffered for almost 20 years and worked extremely hard to get where I am between meds and intensive therapy. If the MO declares that Tamoxifen will make my mental health suffer, I will absolutely not take it, no matter what.

Just my 2 cents.

Spoonie77

NJGirl -- You've gotten alot of good advice so far, I second it.

My journey will most likely be very different than yours, from a number of perspectives, including the fact I have multiple immune system issues/chronic illnesses prior to being dx with IDC. Hopefully if you try out Tamoxifen you will be one of the majority of patients that experience very minimal SEs along the way. The odds are in your favor for that outcome.

Like OnceABird and others have mentioned, mental health and quality of life can sometimes be a very tricky balance. In your original post, you mentioned being concerned about upsetting the delicate balance that works for you. That is also where I found myself, newly dxd @41 after my very first baseline Mammo, last summer.

This was my journey of decision making: https://community.breastcancer.org/forum/78/topics/868242?page=4#idx_106

For me, it was helpful to approach this huge decision from a number of different directions:

- listening to my team and asking ALOT of questions

-doing my "homework" and listening to my gut and doing more "homework" (my new hobby became researcher extraordinaire)

- being my own advocate, asking for additional testing, or second opinions when needed

- taking things slow (trying to make only ONE change at a time - not swap antidepressants and add in tamox at same time etc)

- rethinking things/being flexible with myself and my fears

- making a PROS/CONS list and comparing it to my "What if METs, will I regret NOT doing x y z?" (my answer was YES), so that left me with a choice that I wasn't entirely comfortable with/scared about, but I was more scared about METs, so I gave it a shot.

Like I said, that is my journey to make my Tamoxifen decision, everyones is unique. I hope you will sail through on it and your delicate balance withstands a little tinkering and is no worse for wear. Keep us posted. We're here for you.

NJgirl2018

Thanks to everyone for the replies and discussions. I really appreciate it, mostly because most people I know haven't dealt with this so they can be sympathetic but don't really understand what i'm going through. And, frankly, I have not shared much with them because I know they won't understand and I don't want them to worry.

Good point about most of the data being about 20mg tamoxifen. I do think my BS is thinking of 5mg tamoxifen (although it would ultimately be the MO's call I suppose) because she mentioned new research that suggested a low dose was effective.

Mostly I just am worried about upsetting the apple cart of my life. It isn't perfect by any means, but some things have been going fine. I had a lot of trouble with recurrent UTI's/yeast infections when i was younger and so i'm afraid that changing my birth control method may somehow mess that up or trigger that again...the idea of an IUD sounds like it would be irritating to my reproductive tract.

Then the zoloft. My graduate degree is in pharmacology so I well understand the concern around CYP2D6 and tamoxifen but I can't imagine having to re-calibrate my mental health. Hopefully my MO will be open to trying it as zoloft is not categorized as a "strong inhibitor" like wellbutrin or prozac is. It took years to get my mental health to a state where I feel stable (and I tried prozac, celexa, lexapro before zoloft) so I'm terrified of the idea of changing it, especially at a point in my life which could be fairly described as anxiety-inducing.

Onceabird, I totally understand what you're going through--I am very proud of where I am mentally now and almost nothing is worth risking that. Good luck with your journey and I am here to support you!

I meet with my BS on Wednesday to get the full pathology report and then she will refer me to an MO for further discussion but hopefully I can get some questions answered with her. I really like her and trust her opinion.

Again I just really appreciate hearing everyone's story and how you worked through to your decision. I will keep you all updated.

Trying2staypositive

NJgirl2018, I am high risk too and going through my first biopsy and set of investigations now. My mother and grandmother had breast cancer but my aunt only had ADH. Just wondering about the ADH...dont they usually surgically remove the area containing the ADH? They did in my Aunts case but that was 9 years ago and nothing wrong since-she just needed more monitoring. Not sure if she takes tamox. I will ask her. Also wondering in her case if they diagnosed the ADH after a surgical biopsy which is why they removed it? Its possible....She doesnt talk to the family much. My grandma took tamox, no complaints but she was older. My mom took aromasin and needed effexor but that was for the hot flashes-chemo thru her into menopause. (She had IDC)

Spoonie77

NJGirl -- One more thing to add, about mental health, and my experience with Effexor, since you are rightly concerned about consistency of mental health. I LOVED LOVED LOVED my Cymbatla, I think like you LOVE your zoloft. It was the only thing that seemed to work for me, others had failed. So like you, I was hesitant at all about trying Effexor/Pristiq to avoid the counter-indication about the CYPD26 enzyme pathway but I did and it was a disaster. Not intended to scare you, just to support you in speaking up to your providers if you do decide to try a different med than Zoloft and experience SEs.

I went from dealing with my Spoonie life/Breast Cancer with managed Depression/Anxiety/PTSD to a suicidal, panicked, anxiety ridden, obsessing about self-harm or harming my !!!BELOVED FURBALLS!!! person in a matter of weeks and my psychiatrist would not listen to me about how awful it was. She kept pushing me to keep giving it another month, she doubled my dosage of the anti-depressant, and I tried to follow her directions against better judgement. I finally told her I'd had enough and spoke to my MO, saying if in order take Tamoxifen I HAD to be on Effexor/Pristiq then I will deal with my risks with recurrence/METs if it happens, because otherwise I will not be alive to take the dang Tamoxifen at this rate. That got things moving and she spoke with my MHP and between the two of them the found research that supported treating me with Tamoxifen while on Cymbalta.

If I hadn't of spoken up and made them listen to me, I don't know where I'd be right now. Possibly dead. That is one thing I wish I had done sooner -- spoken up sooner. So please do speak up for yourself if you do experience any sudden or scary changes that are not YOU, the YOU you know and love.

Again your story will not be mine, we are all different. That was just how part of mine turned out. Wishing you the best and most favorable outcomes in your journey.

NJgirl2018

Spoonie--thanks for your additional input. That is exactly what I'm afraid of! I know everyone is different and changes to my meds may work just fine for me, but given how long it took me to get to this point, I'm skeptical. And NOT THE FURBABIES! They are basically my children (I don't have kids) and I am afraid that I may get ugly to either my hubby who has been spectacularly supportive during this debacle or my furkids.

I'm glad you spoke up and things seem to be going better for you. I also appreciate your whole journey that I read yesterday...it helps to just hear other people's experiences. I have my appointment with my BS tomorrow and will learn more.

Also, trying2staypositive: My biopsy was benign but they felt it was discordant with the mammo/ultrasound so they found my ADH on the excisional biopsy, so I didn't have the experience of being diagnosed with ADH and then it being removed surgically, and I don't know if the margins of what they took from me are clear (or if "clear margins" even make sense with a diagnosis of ADH). Good luck with your testing!

NJgirl2018

So I got my pathology report and spoke with my BS today...didn't learn too much more as I have to meet with the MO to determine whether to go on tamoxifen or not. However, I did learn that I am lucky enough to have both ADH and ALH. Ugh. She told me to stay on my birth control pills until I meet with the oncologist (because I was ready to stop immediately given the fact that these cells are probably eating up the estrogen), and she mentioned again the low dose of tamoxifen, or said I could also consider lupron/AI if I am looking for birth control anyway rather than getting an IUD. I guess I'll see! On the bright side, my surgery site is healing well so that's good (and I saw it for the first time with the steri strips removed!) To be continued I guess!