Menstruation After Treatment

MydogandIhadcancer

Hey, all. Diagnosis and BMX dates below.

Just have a few questions about not using tamoxifen, aromtase inhibitors, or undergoing oophorectomy after BMX for DCIS.

I did my research (and a second opinion) indicated that as long as my final pathology report continued to show only DCIS and didn't uncover anything invasive or other tumors, a bilateral mastectomy lowered the risk sufficiently not to need hormone therapy or a hysterectomy. I had a bilateral mastectomy in December. Final pathology still showed only stage 0 DCIS, no other involvement.

I have been peri menopausal for a few years. I had a period in August of 2019, the same month of the screening mammogram that kicked off this wonderful episode. I didn't have another until March and April of 2020. I just had another (November 2020). They are very light menstruation. Hot flashes stopped a while ago. Prior to my diagnosis, I was already skipping cycles. Clearly my body is naturally lowering my hormone levels.

Due to family history of strokes and clotting mutations, I was tested and diagnosed with the mutation for Factor II (increased clot risk). My onco said a side effect of tamoxifen is increased clot risk and I should not use tamoxifen. She pressed for a hysterectomy but I don’t want one.

There is no family history of breast cancer and my genetic testing showed no known mutations for breast (or any) cancer.

My onco seems to have forgotten about my clotting factor because she continues to pressure me to take tamoxifen. Like at every follow-up, she brings it up. She said last week that if I have any more periods, she will insist on tamoxifen. I am not going to have a stroke over this and will continue to refuse tamoxifen.

So, I would like to hear from others diagnosed with DCIS who don’t use tamoxifen or aromatase inhibitors and didn’t have oophorectomy and weren’t yet in menopause.

Beesie

I just answered your same post in the other thread. I will copy and paste it here:

MydogandIhadcancer,

If you had a BMX for DCIS, then unless you had close surgical margins or are very high risk for a new primary due to a genetic mutation (BRCA, for example), there is absolutely no reason to take Tamoxifen or an AI (for those who are post-menopausal).

Tamoxifen can reduce 3 risks. But as you well know, Tamoxifen comes with side effects. So whether or not to take Tamoxifen is always a question of balancing the breast cancer risk reduction benefit from Tamoxifen against the risk of serious side effects from the drug itself.

For someone who had a BMX for DCIS,

• the risk of local (in the breast area) recurrence is 1%-2%.
• the risk of distant recurrence with DCIS is effectively zero. (Note: This changes of course if the patient has an invasive local recurrence)
• the risk of a new primary after a BMX is 1%-2%.

.

Tamoxifen can reduce these risks by approx. 50%. So at most, the benefit is a 1% reduction in local recurrence risk and a 1% reduction in the risk to develop new primary. The risk of serious side effects from Tamoxifen, even for someone who has no pre-existing conditions or conditions that increase the risk of clotting, is 1%-2%. This means that at best, the benefit vs. risk equation is a trade-off; given that at least 50% of Tamoxifen users experience quality of life side effects, few if any doctors would ever prescribe Tamoxifen or an AI to a patient who has had a BMX for DCIS (assuming clear surgical margins).

I agree with Peregrinelady. In your situation, with the additional risk factor of clotting, it is criminal for your MO to push Tamoxifen on you. Change MOs. And ask this MO to explain the recommendation in terms of the risk reduction benefit you will receive from Tamoxifen. The numbers simply don't add up.

Ductal carcinoma in situ: Treatment and prognosis

"Bilateral mastectomy – For women who have undergone bilateral mastectomy, there is no role for adjuvant endocrine therapy."

"In women having bilateral mastectomies for DCIS, the risks of adverse effects from tamoxifen outweigh any potential benefit for risk reduction."

MydogandIhadcancer

You are the best. Thank you. I needed reassurance.

VegGal

I agree with Beesi, and will go further to ask why you are even seeing an MO at all? I had DCIS and opted for a BMX as well. I never saw an MO, my breast surgeon said the risks of hormone therapy far outweigh the benefits and I simply see my BS annually. All of my treatment was done at an NCS designated cancer center.

MydogandIhadcancer

So in your experience, I don’t need an oncologist? I honestly wonder why I see her as well. She did blood work in January, after my BMX and again in April but not since. I see the visits as a rubber stamp and was always told that bc patients are followed for five years, initially quarterly, then bi-annually, then annually. I expected her to do lab work before each visit but that isn't happening. Without lab work or scans, how would she know I’m cancer free? Is there a reason why my regular physician can’t order the same blood tests

LivinLife

I had a BMX in August. I was only ER 2% positive. My MO said she would've recommended an AI if I was 30% so I was thankful I was not. Given my ER was so low I would have had all the toxicity/side effects and none of the benefits - thanks to Beesie for info prior to me needing to make a decision about any of that : )

VegGal

I saw my BS last week. I was told any blood test is unreliable and they don’t use them. I have never been offered them.

From what I have learned on these boards, most women with pure DCIS do not regularly see and MO. They may when diagnosed, but then discontinue or are passed on to either a primary care doc or the BS for follow up. Many of those woman are also discharged altogether after five years, but it seems my BS wants to continue to see me once a year.

MinusTwo

I saw an oncologist when my diagnosis was DCIS before my BMX. It was my choice. I wanted to meet one before surgery and get his take on the plan because he had treated a friend of mine. Also wanted have an MO who'd reviewed my diagnosis & treatment plan in case something else developed during surgery. Unfortunately although the surgery was good, I did have a local recurrence 2 years later so was grateful that this MO was already on board.

My BS & PS wanted to see me for post surgery and then at 6 months & then done. So I did continue to see the MO every 3 months for whatever prescriptions I needed and a fantastic physical.

Further down the road, My PCP was resistant to ordering blood tests, but my OB/Gyn was happy to do it.

Edited to say - if it matters. I was hormone negative the first time and hormone negative the second time, although the cancer had transformed into IDC and HER2+. Also I hadn't had a period in a number of years.

Jelson

VegGal - I just want to say that people with DCIS AND BMX don't usually regularly see a MO. However, for those ER+ who have had lumpectomies or who have had BMX with close margins, regular visits to an MO with blood work would be usual during the time Tamoxifen or an AI was prescribed. The normal blood work would be for looking for Tamoxifen side-effects - not cancer.

I too question someone with DCIS and a BMX AND a clotting factor disorder being hounded to take Tamoxifen or alternatively, an AI.

VegGal

Yes, I was referencing women with pure DCIS who had BMXs. I certainly understand the need for more frequent monitoring in other situations.

Beesie

"Without lab work or scans, how would she know I'm cancer free?"

Even with blood work and scans, she wouldn't know you are cancer free. Blood work is notoriously unreliable, and scans only see cancer that is above a certain size (generally 5mm but it varies). Blood work and scans are not recommended for those with early stage invasive cancer, never mind those with DCIS.

I had DCIS-Mi - I had a small microinvasion of IDC along with a lot of DCIS. I had a single MX. My MO recommended against Tamoxifen and explained that the only real benefit would be to reduce risk in my remaining breast. This risk would span my lifetime and he didn't feel that Tamoxifen at that point (I was 49 when diagnosed) made sense because my risk to develop a new primary would be higher as I got older. After thinking about it and researching it, I agreed (he would have prescribed it if I decided that I did want to take Tamox as a preventative). And at that point, since I wouldn't on any further treatments, my MO and I agreed that there was no reason for me to continue to see him.

Here are the NCCN Guidelines for surveillance and follow-up for both DCIS and invasive cancer:

MydogandIhadcancer

A quick thanks to everyone who responded. It's interesting what escapes your mind over a year. I chose a BMX because it would render additional therapy unnecessary. Beesie really helped by reminding me that there is no role for adjuvant therapy after BMX for DCIS.

The rest of the discussion led me to review my pathology reports. My post-surgical pathology report shows grade III, ER/PR+ (94/96% respectively) DCIS. I don't think I have an Allred score or an onco type. My closest margin was .2 mm anterior and “remote from the posterior margin" and margins were clear.

I don't know if .2 mm is a close margin, as Jelson highlighted. However, anterior would be near the skin and that's all gone and posterior, i.e. chest wall, is remote. My bs seemed happy with my margins.

So based on everything in this discussion, I don't believe I need an oncologist at all. My MD did a breast area exam and abdominal/pelvic palpitation at my last appointment and always listens to my breathing. I see my gynecologist annually.

I was never going to take that tamoxifen. I just got frightened because last week, my MO said, “If you have any more periods..." and two days later, I noticed I had started. Fun! So I panicked, forgot all my own research, and wondered how worried I should be about light menstruation every 6 months. Thank you for talking me back to sanity!