Anyone not do anti hormonals?

CAMommy

I have tried tamoxifen and it's terrible for me. I have a ton of SE and a MO who flat out told me he thinks beyond hot flashes, SE are all in a woman's head. Awesome. Just love doctors like that. He did say he'd switch me to an AI if I have SEs from tamoxifen.

Honestly I don't want to do either. I did the lumpectomy, no problem. I suffered through rads with horrendous burns. I'm drawing the line here. I don't want to be sick every day for 5 (or 10 years) to lower my risk of recurrence or contra lateral BC from 4% to 2%. Or even is its higher because of my family history, it doesn't seem worth it.

Anyone else opt out of hormonals or stop them? I feel so guilty about this decision and am afraid to tell my MO. My RO never thought I needed them.

Italychick

have you tried magnesium? I see a lot of women say it helps with the hot flashes

farmerlucy

CAMommy - You can only do what you can do. With pure DCIS I can certainly see why you would take a longer look at whether or not to take them. I tried Tamoxifen for a ten days, couldn't handle what I thought were side effects, stopped for a year and then started a year late. The second time I had the garden variety hotflashes and such. Ideally we'd all start the meds when we are in a calm and peaceful state, but for me at least that wasn't the case. I also made the mistake of starting Celexa the same day as T. Anywho, I had some time to think about taking Tamoxifen that year. In the end not doing all I could was weighing so heavily on me that I opted to try again. I'd say take a break and take some time to really evaluate your decision. I'm kicking myself now, because I could be in the middle of my fourth year instead of my third. Like I said - we can only do what we can do. Hugs!

Loral

I stopped for 8 months after taking it for 2 years. I started taking it again this week. I'll try it for another 3 years, I don't want to switch to a aromatase inhibitor because I have Osteopenia in the hips,and had a hip replacement in May. 

Good luck whatever you decide to do. We really don't have many otions.

CAMommy

http://www.cancernetwork.com/asco-2015-breast-cancer/anastrozole-trumps-tamoxifen-dcis

This is what I'm talking about:

"Patients and clinicians need to consider potential side effects of both treatments, especially because these therapies are not likely to impact overall survival. - See more at: http://www.cancernetwork.com/asco-2015-breast-canc..."

Neither AI or Tamoxifen have any impact on increasing our lives, mostly I'm sure because DCIS is highly survivable regardless of treatment.

Annette47

This is one of those situations in which I’m not sure survival is the best metric - or at least the only one. As you say, DCIS is so highly treatable that the inclusion of anti-hormonals doesn’t affect overall survival. And the reality is for most cases, since we are now under heightened scrutiny, any recurrences or new primaries will most likely be caught early enough to be treated .... BUT ... that would mean going through treatment again, and since it is the second time around the treatment may be more aggressive with more impact on quality of life.

So yes, taking Tamoxifen might not be extending my life but perhaps it is preventing me from needing a mastectomy in the future (from a recurrence in an already radiated breast) or preventing the need for chemotherapy for an invasive recurrence or new primary. I’m not saying that everyone should take it - just that there are reasons and benefits to it other than just survivability, and those should be taken into account when making decisions.

ChristineT

Camommy

I talked in great length with my Ocologist the side effects of taking Herceptin for 5 years versus the 2% decrease from 8% to 6% it would give me in a reoccurrence. We both agreed the long side effects outweighed the benefit. Now that being said you need to make that decision for yourself if you don't want to take Tamoxifen. Don't feel guilty its your body look at it from all angles and then decide

marijen

Hey ChristineT what about the percentage of decrease with radiation

CAMommy

Marijen, when you look at the it terms of survival (not recurrence) none of the treatments have any impact on survival for pure DCIS. I don't recommend doing nothing since 10% of the time invasive is also in DCIS. But pure DCIS is almost 100% survivable regardless or inspite of treatment.

MelissaDallas

Christine, do you mean something other than Herceptin? Herceptin is only given for invasive cancer, not pure DCIS.

ChristineT

MellissaDallas on my second surgery When they went in to get clear margins they found some invasive cancer they didn't see before. Herceptin is what my Oncologist said to me.

percy4

I had low and intermediate grade DCIS with a non-aggressive microinvasion. Lumpectomy; rads. My personal recurrence chance is thought to be in the single digits, so I passed on the anti-hormonals. I have terrible hot flashes already, and work at a physical job so I can't even have a "trial" period of joint pain. I could have tried them and stopped if I found it too difficult, but the reduction of a very few percentage points was just not compelling enough for me. That said, I am 58 (56 at diagnosis) with no family history and my children are grown. If my children were small, I may have tried them. My RO (the smartest doc I ever met) told me that studies show that ongoing exercise cuts recurrence by about 30%. It has to be taken seriously, like a prescription (often and forever). So I choose that.

debiann

Christine, I don't think your doctor meant to say hercepton for 5 years. Hercepton is given intravenously with chemo for 1 year if you are HER+ stages 1-3. If you are stage 4 you may get the drug for years, but that's not your situation.

Was your doctor considering chemo as part of your treatment? Hercepton is not an anti-hormonal.

ChristineT

Debiann, I thought Herceptin was anti hormonal. I had an appt today with my Oncologist after rad treatment and asked him to re-explain. Yes I could get Herceptin as I have her 2+ and micro invasion with possibly some IDC in my breast and yes it is not anti hormonal which I was not aware of. No I will not be doing Herceptin as the nasty side effects outweigh the benefits in my Case. Sorry Ladies I should have listened and asked more questions the first time