My ADH path report, is Tamoxifen really necessary?

JayeGA · June 2012

My initial pathology report of 3/21/12 from the FNA found atypical cells.

The results of the lumpectomy excision on 4/23/12 were: Fibrocystic changes (including apocrine metaplasia and dense stromal sclerosis) with surrounding reactive changes, columnar cell hyperplasia, schlerosing adenosis.

Calcifications in benign ducts and lobules

Negative for atypia or malignancy

My BS initially referred me to an oncologist before surgery and the oncologist went over a list of possible outcomes and what his recommendation would be for them. He made a followup appt for 2 wks after surgery. At my followup appt with the BS, she gave me the path report, discussed it with me, said all the atypia had been removed in the FNA, there was none remaining, and scheduled a followup mammogram for Nov. She asked if I was going to follow up with the oncologist almost casually, as if it wasn't really important. I said I would, since I wanted to hear his recommendation and get the results of the lab tests he had done. She said, fine, that would be a good idea.

The oncologist is with a large group practice. When he met with me, he gave me my test results, which showed I was likely in post-menopause. He then suggested I take Tamoxifen for 5 years to block estrogen from my breasts. He explained why Tamoxifen as opposed to other drugs for women my age, why he thought it was important to take precautions, and answered my questions. He also suggested vit D and calcium supplements. That was it. He gave me a RX for it and asked me to follow-up with him in a few months whether I decided to take Tamoxifen or not.

Since then, I have been a little conflicted. I decided not to take the Tamoxifen right now and to concentrate on losing the extra weight I've been carrying. I've already lost almost 20 lbs, and I want to keep it up. I'm eating healthier foods and exercising and lowering all the stress I've been under. That's good. But I also know that healthy women still get breast cancer. Good health helps, it doesn't prevent.

Yet my mom was a survivor, and I watched her completely change her lifestyle after the mastectomy. She never had a recurrence.

So I've decided to not take Tamoxifen right now, and revisit it near the end of the year. My gut is telling me to hold off for now.

Has anyone else delayed or decided against Tamoxifen?

Also, if you originally had ADH or ALH, did your breast health ever improve without surgery or drugs?

I welcome feedback...thanks! Jaye

SpecialK · June 2012

I would question why Tamoxifen was prescribed without being able to determine hormonal receptor status, since you had no carcinoma, only ADH.

beacon800 · June 2012

Congrats on such a good path report! The only thing on it that does modestly increase your risk is the schlerosing adenosis. It sounds like your atypical hyperplasia was very tiny if FNA removed all of it.

I would probably do the same as you: say no to tamoxifen for now. First off, if you are post meno you are eligible for a variety of hormonal therapies, not just tamoxifen. Second, tamox does carry some cancer risks of it's own, which I am sure you were told about. You do have to screen for endometrial cancer development while taking it.

I would carry on with close monitoring and if anything more is found you can always take hormonals at that point.

JayeGA · June 2012

Good question, SpecialK. I think it's some kind of oncology protocol to treat ADH with estrogen blockers but I question it too.

JayeGA · June 2012

Thanks Beacon800! I appreciate your feedback!

adebenedetto · June 2012

Hi Jaye,

I had a lumpectomy December 2010 and was diagnosed with Atypical Lobular Hyperplasia. I am on a five-year plan for Tamoxifen. After taking it for a month and suffering from crippling depression, my family doc prescribed a very low dose of an anti-depressant. After a month's break, I resumed the Tamoxifen and with the exception of a some sore muscles, I have not had any problems until recently. My vision is suffering A LOT. During my next visit in July, I am going to ask my breast surgeon to see if I have Estrogen-positive receptors. Not sure why they don't test prior to giving you a medicine which could cause other sorts of cancers.

The Tamoxifen can lower my risk from 30% back down to 8% and that is why I take it faithfully. Is it the right choice for everyone? I can't be certain but it certainly is the right choice for me.

DocBabs · June 2012

In 2007 I too was diagnosed with ALHAMBRA and an excisional biopsy revealed LCIS. My oncologist said that she treats all patients with this diagnosis with tamoxifin. There were no receptor studies done.. I did not go on tamoxifin due to a past history of pulmonary embolism. I was also post menopausal at the time.

MoodyMoo · June 2012

New to this board...jumping right into the discussion however. I was diagnosed with LCIS on a core biopsy the beginning of May, and then had an excisional biopsy the end of May that revealed ADH. Since I am pre-menopausal, with no family history, my BS is going to do a repeat MRI/Mammo in 6 months and then go from there. I too had asked about tamoxifen, but since there was no testing to see if what's going on in there is estrogen-receptive...I'm not sure it makes sense. However, I may have a different opinion in 6 months depending on what might be found then.

Anonymous · June 2012

I was diagnosed with LCIS almost 9 years ago. My bs said the sample would be tested for hormone receptors, but then when the pathology report came back, it said hormone receptors were not tested because the sample was too small. But they assured me that most often LCIS is estrogen positive, and since I also have family history of bc (mom had ILC), going on tamoxifen was really paramount for me, because of the combined elevated risk level. MoodyMoo---have you seen an oncologist yet ? surgeons are great for surgery, but oncologists are the ones that can help figure out your overall risks, and your risk and benefits of preventative meds, and can coordinate your overall follow-up care.

anne

Gypsygirl56 · January 2015

I would like feedback about tamoxifen and ADH. I had a lumpectomy for ADH with clear margins. There was a question of LCIS in the same area with clear margins. It was ER receptive. Is tamoxifen really necessary? I am postmenopausal and have low risk factors. The oncologists wants me to take it as a preventative The oncology radiologistsaid I do not have breast cancer. Would the risk of endometrial cancer outweigh the benefits of tamoxifen.

Montmartre1540 · January 2015

i am 40 had a wire localization biopsy dx with ADH on my left no family history and i am on 5 years of tamoxifen. Today is my day number 4 . My oncologist told me that i have 25 % risk in 25 years spand tamoxifen will help reduce risk to 10-12%. I have a small child i can't take any risk of BC so, i took the med after a lot of research. To my suprise, i have very Little side effect no hot flash just little nausea for the first few day.

MelissaDallas · January 2015

Gypsygirl, Tamoxifen only has about a 1% endometrial cancer risk and postmenopausal women usually aren't given tamoxifen. Generally they are given an aromatase inhibitor which does not carry that risk.. Depending on other personal risk factors, women wiith atypia like ADH & LCIS (whether they had clean margins on biopsy or not)are typically assessed as having a 25-30% chance of going on to develop breast cancer. The drugs cut this risk approximately in half. You should have a discussion with your doctor about your personal risk profile & risks versus benefits of taking it.

ballet12 · January 2015

Hi Melissa, I actually think that Tamoxifen is the hormonal med most often offered to those post-menopausal with a diagnosis of atypia (ductal or lobular). The aromatase inhibitors are more likely to be given for DCIS and LCIS. I'm not sure the reason for that, but I have had both ADH/ALH diagnoses and DCIS, and those were the options given to me (depending upon the diagnosis). For those with ADH, if they don't given Tamoxifen, then often given something like Evista (raloxifene), which is a selective estrogen receptor modulator (SERM) in the same general class as Tamoxifen. Aromatase Inhibitors have a different action, blocking the enzyme aromatase, which affects the process by which androgens are able to produce estrogen. I am guessing that aromatase inhibitors have a more extreme effect on available estrogen in the post-menopausal body. This is my understanding of clinical practice.

Lotusconnie · February 2015

I am 36 with ADH. My MO wants me to start tamoxifen at age 40 or 45. Here is her rational that I would like to share with you.

1. Using the NCI breast cancer risk model, my life risk of having breast cancer is 40% and tamoxifen supposely can decrease it by about half per my MO. So it is not "if", but "when" I should start taking it.

2. My risk of developing BC in the next 5 years is 1.8% calculated by the model ((we all know that the risk model itself is really unreliable, and if BC happens it happens), and tamoxifen can decrease my risk by half.

4. When I am 45, my risk of developing BC in the next 5 years is 4.6% calculated by the model , and tamoxifen will theoretically provide more risk reduction at that time.

5. It is unknown how long the protection will continue to be there when I stop taking tamoxifen.

6. It is currently only recommended for patients like me to take tamoxifen for 5 years, not 10 years or longer, due to risks including endometrial cancer and blood clots.

Therefore, my MO wants me to be on the high risk imaging screening with mammogram alternating with MRI every 6 months, and then start to take tamoxifen later.

However, my concerns/points would be, the benefit of starting tamoxifen now includes,

1) My breast density could be decreased and it facilitates early detection of disease. I heard tamoxifen can decrease breast density. True?

2) Any potential abnormal cells could be halted for proliferation because it does not have estrogen to provide stimulation. And when I am older, my estrogen level will be lower. BC is more progressive in younger women or peri-natal women. And I just had a baby.

3) After tamoxifen for 5 years, maybe it could be considered for me to take an aromatase inhibitor for another 5 years? Per Uptodate, compared with tamoxifen, the AIs are associated with a higher risk of osteoporosis, fractures, cardiovascular risk, and hypercholesterolemia. In contrast, they are associated with a lower risk of venous thrombosis and endometrial cancer.

Just some thoughts and would like to have your inputs.

Additional point - Yes, tamoxifen only works against estrogen and theorectically it does not prevent breast cancers that are ER negative. I believe the important thing is to have screening imaging tests regarding that concern.

My ADH path report, is Tamoxifen really necessary?

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