Looking For Opinions About Not Taking AI Ater BMX

woodstock99

Hi -

Sorry for long post but conflicted.

I had a BMX & SNB on 1/2/16. I had a bad mammogram late October followed by breast MRI & 4 biopsies in November that resulted in diagnoses below in final pathology. When I spoke with my BS pre-surgery in December after biopsies she told me that I would not need chemo or rads but would need to go on AI.

I met with the the MO the first time a week after my BMX. IMO, she was neutral about me going in AI's after we talked and we agreed upon surveillance. I did express concerns about SE's and mentioned having fibromyalgia (although has been very mild for past 5+ years-occasional flair-not taking any meds), cervical spinal stenosis (detected from MRI when I had an acute bout with shoulder/neck pain that went away ), being watched for glaucoma, on high blood pressure, cholesterol & thyroid meds but last bone density test was ok. She told me to see her in 6 months.

I will recap my diagnosis (summarizing from final path report) :

Right Breast: intermediate & hugh nuclear grade, crib form, micropapilary & flat types associated with central necrosis, and involving the lobules and sclerosing adenosis. DCIS present in buckshot fashion in 4 slabs from 11:00 to 9:00; span about 4 cm area. Margins are negative. Lobular carcinoma in situ, classic type, The 4 sentinel lobes removed were all negative. Number of blocks with DCIS: 6. Number of blocks examined: 16. Nuclear grade: 2 & 3. All margins: > 10mm. Pathologic staging: pTis No (sn)

Left Breast - Stage 1a & DCIS: Invasive ductal carcinoma. Tumor size 2 mm, Tumor site 1:00. Tumor Focality: Single focus. Histologic Grade: 1. Nottingham Score: 5, Tubular Differentiation: Score 3. Nuclear Pleomorphism: Score 1. Mitotic Rtae: Score 1. No residual invasive ductal carcinoma identified. DCIS, grade 1, 2 & mostly grade 3, cribiform, and sold types associated with central necrosis and calcifications and involving the lobules. DCIS present in buckshot fashion in 3 3 slabs from 1>00-2:00 span about 3.5 cm. Margins are negative. Extensive lobular carcinoma in situ, classic type, nuclear grade 1 and atypical lobular hyperplasia involving preexisting fibroadenoma and adenosis. Margins for invasive or in situ carcinoma: negative. All marginsL > 10mm. All 4 lymph nodes 0 metastases. Pathologic staging: pT1a N0 (sn) Comment: high grade DCIS with focal out pouching growth at the edge with inflammation noted and a feature that is suspicious for invasion, SMM and P6 immunostains were perfumed and they highlighted the presence of myoepithelial cells, There is no evidence of invasion indentified. Deeper levels are also examined. E-cadherin is negative in the LCIS.

After I saw the MO, I spent a few days rethinking taking an AI particularly after reading about recurrence on this site particularly with a high rate for those with stage 0 and 1 cancers, and I decided that maybe I should try one and at least see how I did so after I had my drains out this past Monday I spoke to the MO's nurse who spoke to the MO for me. The MO conveyed that she still was not recommending an AI for me as my recurrence risk is so low.

While I am happy to hear this everyone here seems to say that you really need to at least try taking an AI which I was now offering to do and I am wondering why she does not even want me to even try one. I told the BS earlier when she was taking out drains that I wanted one and she thought that was a good idea.

I sent a message to nurse navigator about this and this is response I received:

I talked with your MO, who said I could share the following information with you. This may help with your understanding of the risks/ benefits of the AI and where Dr. xxx was coming from in her recommendation.

The issue of the aromatase inhibitors in a patient such as this is that she has fibromyalgia and already has significant musculoskeletal symptoms which are very chronic and are very likely to be exacerbated by the presence of an AI. Since the outcomes of patients with this minute and invasive lesion are extremely good, meaning that the risk for relapse over a 10-year period is less than 5%, particularly if the patient is ER positive, it makes it very difficult to offer an aromatase inhibitor to the patient because the risk/benefit ratio is relatively trivial, even if a hormonal adjuvant reduces risk by 50% for either invasive or in situ lesions.

The patient has no breast tissue. The chance of a relapse is also very small, so even if the risk was 5% with no treatment, it would only go down to about 2.5% by taking a medication for 5 years with great concern for the long-term effect of the medication on both bone density and symptomatic musculoskeletal pain. The patient asked many questions about how surveillance is done, and in particular it is not done by multiple PET scans on a regular basis, since we now recognize the effect of the radiation that comes from even diagnostic radiology. The followup is clinical.

The history of this patient is also very important because she is Ashkenazi Jewish. She will not test for one of the founder mutations, and as a result she is optimally risk reduced for the breast cancer. The issue that remains is that of ovaries and tubes and the risk of potentially late onset ovarian carcinoma. This patient should have a pelvic ultrasound to be certain that there is no evidence of pathology at this time in the patient and also to set the baseline. The patient also can actively participate in risk reduction by doing some form of daily exercise and to begin losing weight since her BMI is 29 and she is approaching obese status. She is overweight at this time by classification and it is clear that exercise and weight reduction add to decreased risk for patients.

The suggestion we made to her included acceptance of surveillance, no hormonal adjuvant, weight loss and daily exercise and this patient does need to have a pelvic ultrasound. We can perform that at any time.
__________________________________

The nurse navigator added:

You are correct in that hormonal/ endocrine therapy is recommended for women with ER/PR positive breast cancer; I imagine that was where Dr (breast surgeon) was coming from when she talked about AI therapy with you. The ultimate recommendation for it, however, comes from the medical oncologist ), who is the expert in the systemic treatment of breast cancer. Your breast surgeon would defer to your MO's expert opinion. I am happy to explain this with you if needed.

I replied as follows:

I do not recall MO recommending a pelvic ultrasound but am happy to schedule that. . Also the day I saw her was about a week after surgery and I was still heavily medicated having also taken 1/2 Xanax because I was scared of getting my drains removed so I was not in the clearest mental state when we spoke and have had some time to think about this since then. Yes I technically have fibromyalgia but I have not seen a rheumatologist for years and do not take any medication for it. Yes I was diagnosed with cervical spinal stenosis almost 2 years ago from an MRI because I woke up one day with a terrible pain in my neck and shoulder that lasted over a week so my internist sent me to have one but the doctor I saw told me to do nothing and it would probably go away and it did and that most people my age have spinal stenosis that would show up on an MRI. I had a bone density test a few years ago that was fine. Would it make sense for the MO to speak to my internist?

If follow up is clinical and I am supposed to see both the MO and the BS in 6 months what will be the difference in the appointments? Would it make more sense to see one in 3 months and the other in 3 months to alternate?

I know I am overweight (175 pounds & 5'5") and to reach a normal BMI would require me to lose 35-40 pounds and I think the reality of that happening is unrealistic no matter how much I would want it to happen. It would take years if at all. Maybe I could lose 10 or even 15 pounds if I am lucky. I have tried to lose weight for years and I have not weighed 130 since I was in college. I am just being realistic. I already eat pretty healthy and for the past 6 months have cut down on sugar, dairy, beef, sweets, etc and increased veggies, fruits, fish, salads, etc. I don't drink soda. I have one drink a week if that.

Anyone have any opinions about this? Do I get a 2nd opinion from another MO at another facility or should I just be happy with not having to take an AI and believe my risk is low enough that it is not with SE's & just focus on the best lifestyle mods I can make?

Thanks all.

cp418

Unclear why BRCA - genetic testing is not considered as this information may assist in future treatment plan.

SummerAngel

If your doctor is concerned about pain increasing from an AI, you could try Tamoxifen, which seems to cause fewer issues. I say that if you want to give one a try, you should be supported in doing that.

dtad

Hi there. Just want to let you know I sent you a private message. This is a very personal decision and I respect all of them.....

woodstock99

Sorry for not responding sooner but I am trying to work P/T form home and am still very fatigued.

The 2nd part of my message to nurse was:

I do not recall MO recommending a pelvic ultrasound the day we met but would be happy to. Also the day I saw her was about a week after surgery and I was still heavily medicated having also taken 1/2 Xanax because I was scared of getting my drains removed so I was not in the clearest mental state when we spoke and have had some time to think about AI's since then. Yes I technically have fibromyalgia but I have not seen a rheumatologist for years and do not take any medication for it. Yes I was diagnosed with cervical spinal stenosis almost 2 years ago from an MRI because I woke up one day with a terrible pain in my neck and shoulder that lasted over a week so my internist sent me to have one but the doctor I saw told me to do nothing and it would probably go away and it did and that most people my age have spinal stenosis that would show up on an MRI. I had a bone density test a few years ago that was fine. Would it make sense for the MO to speak to my internist?

The reply I received was:

MO said she does not need to speak to your internist. She said you do not even need to follow up with her since she is not prescribing anything for you. You DO need to follow up with BS as your risk for recurrence will be in your surgical "flaps". Your risk for recurrence is felt to be very small (< 5%).

I was stunned. I felt like I was fired.

I have been told this is abandonment and violates Patients Bill of Right and that I should contact contact Medical Board, etc.

I showed these messages to a friend who is a PCP yesterday and he was very aggravated. He said she is supposed to refer me to another MO, etc.

Truthfully, I am supposed to go back to work next week and have no strength or time to deal with all this now.

My only concern is my health.

Does anyone know any bi-lateral BC patient who is 3 weeks post-op who has had no oncotype or other tests and is not being seen by an MO when next BS appt is in 6 months?

I put my tail between my legs and wrote a letter along with my a copy of my final path to the BS who my gut told me to pick but my husband and others steered me towards the one I used who technically is a good surgeon but who I think once you're done you are now a number and the nurse says she defers to MO so I asked 2nd BS if I could make an appt to come in and talk to her & hopefully get a referral to a new MO.

I did not do gene testing for a number of reasons: no family history of any DC or ovarian, no children, could really only deal with the bi-lateral BC & BMX.

I am just curious if many MO's really opt for no AI's for someone 95% ER & PT + regardless of how low their risk is - there is still risk.

Is this a new trend? I

am happy not to take the pills but to be told I don't even need to be seen by the MO just has me pretty flipped out.

Thanks.

cp418

I would find another MO and get a second opinion to have the Oncotype testing done. This testing is available and would provide diagnostic information to an MO. Your current MO should still be doing some sort of followup and I'm as just as confused as you. Sounds like he/she is not interested to monitor you because Tamox or AI not prescribed. Do not feel you have to apologize for asking questions because you are looking out for your own health.

BarredOwl

Hi Balthus:

I am a layperson, with no medical training. However, here is some information regarding Oncotype testing, which you may find helpful, as you process the advice you have received and frame your next steps.

As noted in the bilateral thread, the Oncotype test for DCIS is only done in patients receiving breast conserving therapy (lumpectomy) to help decide about radiation. So that test is not relevant for you due to your bilateral mastectomy (and regardless of the presence of bilateral DCIS).

The Oncotype test for Invasive disease is not always indicated or performed. It does not really surprise me that neither the MO nor the surgeon discussed this test with you for a purely node negative, 2 mm IDC (grade 1).

The Oncotype test for invasive disease is indicated for hormone receptor-positive, HER2-negative invasive disease only. The passage quoted from your pathology report does not appear to address ER or PR status of the IDC. It does not appear to address the HER2 status of the IDC. Does your surgical pathology report or an addendum, supplement or appendix thereto include ER, PR, or HER2 status for the 2 mm IDC? If you do not have that information, you may wish to inquire whether these tests were done on the 2 mm IDC, and obtain copies of the results. If not done, please request an explanation of why they were not done. In my own case, several immunohistological tests were done to determine that a 1.5 mm tumor was invasive, and there was "no invasive tumor remaining for additional studies".

If your 2 mm IDC is known to be hormone receptor-positive and HER2-negative, I add the following: For invasive ductal carcinoma that is node-negative (pN0), hormone receptor-positive, HER2-negative, where the Tumor ≤0.5 cm, the NCCN guidelines (Professional Version, 1.2016) do not include the Oncotype test. This is because the guidelines do not even include chemotherapy as an option in this particular node-negative subset for which the advice re adjuvant treatment is:

"Consider adjuvant endocrine therapyy (category 2B)"

In the discussion of the guidelines, with respect to this group, it is further stated (emphasis and parenthetical text added by me): "Small tumors (up to 0.5 cm in greatest diameter) that do not involve the lymph nodes are so favorable that adjuvant systemic therapy [chemotherapy] is of minimal incremental benefit and is not recommended . . ."

It is understandable that the committee does not recommend running the Oncotype test for invasive disease to aid in decisions re chemotherapy in these specific patients, because they do not meet the NCCN requirements for a recommendation of adjuvant chemotherapy in the first place. As a practical matter, the availability of an adequate amount of suitably-prepared tissue to run the test may be a hurdle for some very small invasive tumors.

As you know, the guidelines are not mandatory, and it may be appropriate to depart from what they provide in certain cases. Occasionally, you may see that someone with a Tumor ≤0.5 cm received the Oncotype test for invasive disease. Perhaps this predated the issuance of the NCCN guidelines on point. Perhaps the tumor was on the borderline (~ 4 to 5 mm) in terms of size. Perhaps they are very young and chemotherapy was seen as being of greater benefit in their specific case.

In addition, the Oncotype test for invasive disease assumes that the patient will be receiving adjuvant endocrine therapy. Again, in this particular patient group with invasive ductal carcinoma that is node-negative (pN0), hormone receptor-positive, HER2-negative, where the Tumor ≤0.5 cm, the NCCN guidelines (Professional Version, 1.2016) provide:

"Consider adjuvant endocrine therapyy (category 2B)"

Thus, endocrine therapy may be considered, but is an option in this particular group. As the MO did not recommend adjuvant endocrine therapy to you, this would be yet another reason she did not recommend the Oncotype test.

Both the qualification for Oncotype test and endocrine therapy are in the area of expertise of MOs. For case-specific, current, expert professional input and additional discussion regarding peronalized risk-benefit, your treatment plan and follow-up, I agree that your best path forward may be by way of second opinion with another MO.

BarredOwl

[Edit: The above information is provided solely to address the question about Oncotype for invasive disease. With respect to endocrine therapy, with bilateral disease, including LCIS, DCIS, and IDC, one would also consider NCCN recommendations regarding endocrine therapy applicable to each condition.]

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Age 52 at diagnosis - Synchronous bilateral breast cancer - BRCA negative;

Bilateral mastectomy and SNB, without reconstruction 9/2013

Dx Right (Stage IA): ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes.

Dx Left: ER+PR+ DCIS (5+ cm); Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).

BarredOwl

Hi again:

If you wish to consult some original sources:

Eligibility for Oncotype Test for DCIS:

http://breast-cancer.oncotypedx.com/en-US/Professi...

Eligibility for Oncotype Test for Invasive Disease (may be formally broader than what NCCN guidelines provide):

http://breast-cancer.oncotypedx.com/en-US/Professi...

NCCN Guidelines for Breast Cancer - Professional Version:

http://www.nccn.org/professionals/physician_gls/f_...

At the very top of the page, click on breast cancer, then at the very top (next to the red "pdf"), click on "NCCN Guidelines" to get to a registration page. Access requires registration, but is at no cost. The guidelines are periodically updated.

Most of the information above regarding the Oncotype test for invasive disease is from page 18 of the document (Chart BINV-6), where the test is referred to as the "21-gene RT-PCR Assay".

BarredOwl

woodstock99

@barredowl don't have in front of me but recall I was told that I was both 95% ER & PR positive & HER 2 negative by BS both before and after surgery hence no need for chemo or rads but that I would need AI. Thanks

labelle

I chose not to take a hormonal after completing surgery and RADS. At that point my OC also said she did not need to see me anymore. No routine scans or tumor marker tests are done at the breast center I go to-at least not for women who've had early stage breast cancer and have no symptoms of a recurrence.

The OC said her job henceforth would be to monitor my blood work and how I was feeling re possible problems due to taking a hormonal and since I wasn't taking one, there wasn't anything for her to do. I found this reasonable, as does my PCP and my BS. OC said if I had any signs of a recurrence, bone pain, a cough that doesn't go away, etc., she'd be happy to see me again and order scans if needed, just as she does for her patients taking hormonals, but with no meds to monitor and no reason to order scans or tests, she's off my dance card. I do still see the BS every six months for an exam (and will for a couple of years yet) and she orders mammograms/ultrasounds for me as needed. As it was explained to me if you've got no symptoms of a problem or recurrence and you aren't taking any drugs prescribed by the OC, there is no reason to see one.

However, if you want to and believe you would benefit from taking an AI or Tamoxifen, I would think you'd be able to find an OC that would prescribe one of these for you. Given your stats, you apparently have a very low risk of recurrence, but you have had ER+ BC so I'm sure many OCs would be willing to go that route.

ChiSandy

Could it be your MO was practicing a sort of defensive medicine based not on fear of undertreating your cancer but rather exacerbating your comorbidities? He may have feared that even though you can currently handle and tolerate your fibro and spinal stenosis, if he were to prescribe (and you to take) an AI and your symptoms worsened to the point where they'd impact both your QOL and ability to continue earning a living, you might sue for malpractice.

BarredOwl

Hi Balthus:

Please note my edit at the bottom of my post above, to emphasize that it only addressed your question about Oncotype for invasive disease. The information provided above does not address the full scope of the guidelines regarding endocrine therapy as they apply to your situation with bilateral disease, including LCIS, DCIS and IDC.

This was my general experience with my MO. I am known BRCA negative, had bilateral mastectomy, and was offered adjuvant endocrine therapy (tamoxifen b/c pre-menopausal). I was advised that it would be equally reasonable for me to elect or decline treatment. I felt that for me, the magnitude of the potential benefits did not outweigh that of the potential risks, but I was uncertain. My MO invited me to contact her for further discussion on the subject if I wished. I met with her a second time to discuss my many questions, and then finalized my decision to decline it. At that point, she told me she could be my MO if a need arose in the future, but my routine follow-up would be with the surgeon in six months.

Given your favorable prognosis and her estimate of your risk, in your MO's opinion, the magnitude of the risk reduction (the benefit) does not outweigh the risks (aggravation of other conditions, etc), so she is not recommending endocrine therapy. This is a complex area, and reasonable experts may differ (or agree) with her assessment. Good to know either way.

The decision regarding endocrine therapy is a risk/benefit analysis. Decisions often incorporate the patient's "risk tolerance." Different people may weigh the exact same risk/benefit profile and come to different conclusions. There has not been a good opportunity for you to ask everything you want about your risk/ benefit profile and decide how you feel about it (understand your risk tolerance).

Regarding the comment above re tamoxifen versus an AI, you may wish to inquire if an AI is preferred for some reason. Certain clinical studies speak to the use of AIs for invasive lobular carcinoma (and possibly LCIS).

In a second opinion, you can inquire further about the potential risks posed by the other conditions, and whether there is any relevant clinical information available regarding the potential affects of endocrine therapy on those specific conditions, or analogous conditions. You might ask whether if you "tried" an AI, and the potentially chronic conditions were aggravated, would it be reversible?

These countervailing risks may be less acceptable to you if you consider that despite endocrine therapy, some patients experience recurrence. Zero risk may not be achievable even with treatment. Please explore that.

You may also wish to inquire whether your estimated risk of recurrence might differ if you in fact were BRCA-positive, as if so, that might affect your interest in genetic testing.

You may want to request a referral to meet with a Genetic Counselor in due course, if you have not already met with one. In your second opinion, you may wish to inquire about a reasonable time-frame for such a meeting.

BarredOwl

woodstock99

Thank you all. Sorry for late reply. Last week was bad week for me and this is 1st week back at work part-time & today is 4 weeks from BMX. I have the name of a highly recommended MO who I am trying to get a consultation with. It is ALOT to think about. I usually go for the "how can I get optimal benefit with least risk" when making major or minor life decisions but this one is not so clear-cut. Will keep you posted. Thanks.