Pros and cons of endocrine therapy

I was 67 at diagnosis, and have been on 5 mg tamoxifen for 2 years without problems. I did have side effects with the 20 mg dose. I had a choice of an AI or tamoxifen. I personally prefer not to be on an aromatase inhibitor.

Thanks! Can I ask if this was your first breast cancer? Might I ask what kind? And did you have a lumpectomy with radiation?

Yes, first cancer, DCIS intermediate grade, right side LOQ, stage 0, 7 mm after lumpectomy (was measured larger before the 4 core needle extractions were made. 100% estrogen positive, 95-98% progesterone positive, HER not tested because it was stage 0.

I had a lumpectomy and oconoplastic surgery to reshape the breast smaller, and a mastoplexy on left to reduce the size to match right. The Italian study had just started being used to do only 5 days of hypo-fractionalized partial breast radiation. I had a choice of that or 15 radiation treatments. I chose the 5 days (I also had it done in another city, at a satellite center, for travel convenience - if you’re trying to plan yours, radiation can often be done closer to home). I had a total of 30 gy.

My older sister, and my sister in law, both had taken tamoxifen for 5 years and so far no recurrence (22 years and 8 years clear). I did not have too bad a time during menopause at 50 so I don’t know if that meant I’d have fewer side effects from tamoxifen. I think I was very very low estrogen levels after menopause, extreme vaginal atrophy and osteoporosis in one hip, so there wasn’t much circulating estrogen to reduce!

With 20 mg tamoxifen I had a constant headache - they finally did a brain MRI to make sure there was not a growth there. It was decided the headache was most likely the 20 mg. I also had brain fog, mild thermal regulation problems (not hot flashes but when overheated it took a while to cool off) and more moodiness. That all went away when the dose was lowered.

@kbradtke if you read posts on a forum like this, you are going to see a lot more negative experiences than positive, because most people who do fine are less likely to post.

I did letrozole for 5 years with few issues apart from bone density loss, which most people avoid by taking a bone med- but my doctor didn't prescribe a bone med due to a heart issue. Otherwise I would have been fine.

Any pain went away if I walked more than 20 minutes.

You can try different aromatase inhibitors, different manufacturers or even brand name to try to get the best fit for you.

The Oncotype may recommend against chemo. That is not so much about whether it is needed but whether it is of benefit. Some cancers don't benefit. So saying you might prefer chemo to an AI is not only surprising but concerning!

Thanks for your input. Yes I understand that many who post on these forums (or on any information platforms) are likely to have had more negative experiences and or may be at the beginning of their learning curve, like me. While this is not my first rodeo, (I had stage 1 ILC 23 years ago with lumpectomy, chemo, and radiation), treatments and knowledge have evolved since then. Yes I understand that the onco dx test or mammaprint are correlated with recurrence and the benefits (or not) of chemo as treatment. I actually learned about the Lobular Breast Cancer Alliance website from someone’s post on here, and that was hugely helpful!! I’m glad you found letrozole therapeutic. All AIs can produce problems with bone density which concerns me given that I already have osteopenia and osteoporosis. Some AIs can mess with cholesterol as well and I have hi cholesterol already, so the AIs as a therapy option concern me. Yes I want effective cancer treatment but none of us wants to invite other health issues unnecessarily or unwittingly. So while I asked if anyone chose chemo over AIs, this is me in search of answers, and other people’s experiences. Obviously no treatment plan would be chosen without many factors considered. Truthfully, I’m only now learning about what a sub specialty ILC is. Seems that certain hospitals have designated programs for such (Sloan Kettering, MDAnderson, Cleveland?) and wish I were under the care of someone with that research interest. I’ve been to both MGH and Dana Farber here in Boston, yet none of the med oncs I saw bothered to tell me that 95% of ILC is ER positive… my CNB showed 1-10% ER positivity and I spent 2 months thinking mine was more like triple negative breast cancer, including being asked by researchers at DNA Farber to participate in triple negative surveys…wasn’t until the tumor was excised that it showed a much higher degree of ER positivity. Would have been nice to have a med onc tell me that most ILC is ER positive and to wait. Anyway, the point is is that I’m just trying to be as thorough a gatekeeper for my own health as I can be. And that personal advocacy relies on gathering information and talking to other patients as well as doctors.

@kbradtke I posted about the Lobular Breast Cancer Alliance awhile back. If you are in Boston, Otto Metzger at Dane Farber is an expert in lobular.

Cancer diagnosis for me was similarly complicated and contradictory. I was told I was HER+, then equivocal, then negative. I had already bought a wig! I had 4 opinion and Dr. Wulf at BIDMC listened to me and retested with more cells. These days I would probably be "low HER2+".

I was either grade 2 or grade 3 depending on the institution. I had mixed ductal and lobular but even in the supposedly ductal portion, had loss of 3-cadherin which means lobular. None of the 4 oncs I saw even mentioned lobular issues.

I had grade 3, highish ki67% (proliferation), lymphovascular invasion (lymph, focal) but a low Oncotype. No point in doing chemo if it wasn't going to do anything or even make things worse. I did 5 years letrozole and the Breast Cancer Index told me that despite high risk, there was no benefit in further meds. January 15th is my 10 year anniversary.

I had pretty bad osteoporosis and three fractures but did letrozole anyway. I started with anastrazole, had an immediate reaction to the fillers, switched to letrozole, then to brand name Femara. As I said, my endo was leery of Reclast for me due to afib but most women I know do Reclast or Zometa with their AI.
Things in my body seemed to return to "normal" though my forearm skin is thin.

Any lobular cancer makes me nervous because it is hard to see on imaging. My friend had it and recurrence was found in abdominal imaging for another problem Apparently lobular also can spread to abdomen. The difficulty in seeing it on imaging is one reason I had the other breast taken off.

Wow, thank you for all that information!!! I will definitely try to get an appointment with Otto Metzget!! I’have loved my med onc at MGH/Newton Wellesley but I saw her when I was well. Now I’m wondering if she is the right person to see?? I had a regular CAT scan but seems like I should have had an FDG PET or FES PET. I will have to have a mastectomy as this is my second go but asked if I should be getting rid of my L breast as well. (Was told by current team not necessary). There were small calcifications in L breast which were thought to be due to reduction surgery but am now wondering!! Again thank you so so much!! I’m glad to hear you are doing well!!! Btw I was scheduled for reclast just before this dx but cancelled given the plethora of doc visits this last 2 months. Truthfully was a wee bit concerned about reclast given the potential for jaw/dental issues that can result. A friend of mine had one infusion of reclast but already has had a slew of dental stuff. Maybe not correlated but who knows?? Did you do reclast?

@kbradtke back in 2015 I was told I had a legal right to symmetry. My oncologist wanted me to have one mastectomy first to see how I handled it due to lupus and heart etc. I had the second one a couple of months later. They found atypical hyperplasia (precancer) so I was glad I did it. That breast was full of cysts! I like being flat to be honest. I would not have liked having on breast. I don't wear prostheses and clothes actually fit me better than before.

My endocrinologist at the time did not want me on Reclast but my oncologist wanted me on bone meds. The endo won out. There was concern about aggravating my afib. After cancer treatment I have done two years Tymlos which made my bones better than before letrozole. Then 4 months Evenity (most do a year, I kind of created my own protocol).

Now I am on Reclast but at a low dose due to kidneys and afib. I did 1 mg in June and 1 mg in Sept. I was due for another 1mg in Dec. but asked my endo to do a bone marker test called a CTX which showed my bone turnover rate was low. I asked my endo if I could skip the Reclast for Dec. and he agreed. I was told by the infusion nurse that a 2mg dose is not uncommon (usual is 5mg). So if the 5mg does not work for you, in terms of side effects, there are things you can do. I feel I am a little protected from bone metastasis but a full dose would be better in that regard.

If you do a Reclast infusion, hydrate day before, day of, day after (you can even ask for IV hydration). Ask for an hour long infusion, not 15 minutes. Use tylenol. I have read that 40% of women have a flu-like reaction the first time but not with second or later doses. I had a fever for 5 days, then fine, no big deal.

Thank you again for all your help. I’m waiting for a coordinator to call me back from Dana Farber so I can make appointment with Dr Metzger. And the tips on reclast hugely helpful!! I will talk with docs about that. Btw, a friend who does the reclast also takes 3mg boron daily. She said she read a paper that said boron with the reclast helped reverse osteoporosis. I need to see if I can find the paper!

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