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Topic: I am SO upset - need a reality check....

Forum: Hormonal Therapy - Before, During, and After —

This is a safe place to share your experiences of others considering or on hormonal treatment.

Posted on: Oct 5, 2021 12:29PM

macdebbie wrote:

I had my 2nd meeting with the MO I chose today.

The backstory is that when I was diagnosed the BCS was on vacation and I couldn't get in for 3 weeks, so I saw the PA who I loved. She told me at that meeting that I had to choose my team, and gave me a list of MOs, and Radiation Therapists. She told me that they would review my case the following Thurs, so I needed to at least pick by then.

Long story short, I picked a Radiation Therapist that I love, and went to an MO that 2 of my neighbors recommended. I was not that impressed with him. He didn't really talk all that much, although he was amenable to treatment options which I like, even a reduced dose of Tamoxifen if that was the only alternative to me taking treatment. I met with one more MO to compare at a different practice, who I liked better, but was not completely sold on.

So a PA at the first practice got me in to see another MO there who she said was very open to questions, very deliberate, very respectful of people's choices, etc.

I met with him once, and was really put off that he wouldn't let me tape the meeting (he told me he found it "offensive"), which I found odd because all the other MOs and my breast surgeon had let me. It was especially upsetting because this practice does not allow visitors so my husband was not with me.

So today was me 2nd meeting with him to go over my path report, my Oncotype results, and I THOUGHT to go over things like recurrence rates, and how that related to treatment in terms of both relative risk and absolute.

Well... he told me "he did not have time" to go over recurrence rates, and he'd look up that information and someone could send it to me, but he wasn't going to take the time during this meeting to go over it. When I asked about relative risk vs absolute risk, and wanted to clarify if I understood, he said "it's a simple mathematical equation" and went back to looking at his laptop.

He then TOLD me he would start me on an AI but I would have radiation first. NO discussion of why an AI vs Tamoxifen, or discussion about the side effects as it relates to my medical history. When I tried to talk to him about the contraindications I had read about on Mayo Clinic site many of which I have - kidney disease, high blood pressure, osteoporosis, he was VERY dismissive and basically said that's the combo I use and I'll put you on another drug to deal with the bone loss.

There was NO discussion, no back and forth, it was VERY uncomfortable. Then he told me that he "had to go, he had other patients" after 20 min, so I picked up my things and left. I was about in tears walking to the elevator.

I have been reading Dr. Susan Love's book. I took my cue from her as to what to expect and what to ask. She said to ask your MO about recurrence risk, and how much benefit YOU would get from taking the drugs, and that the benefit is directly related to your risk of recurrence.

Was I wrong to expect that an MO would go over this with me? I am so upset right now, I can't even think straight... I will not be able to see anyone else at this practice - they don't allow it. I can't even go back to the original guy that at least answered my questions. My only hope is to try to get in with the 2nd guy I saw at a different practice, but I don't know how he'd feel since I cancelled my follow-up with him, thinking this guy would be a better fit. I just can't stay with anyone who doesn't answer my questions and is put off by me asking any. Even my breast surgeon who is SUPER busy entertains questions and is very considerate and compassionate. Same with my radiation oncologist. When I met with the breast cancer surgeon the first time, she said she never would have picked the first MO I went to based on my personality and recommended someone entirely different. I wish I had waited and gone with her suggestion. Too late now... My husband was conferenced in and he thought this MO was very dismissive and a bit of a jerk.

Dx 7/29/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/13/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy
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Oct 5, 2021 12:47PM jhl wrote:

Oh Debbie, I'm so sorry to hear this appointment did not go well and I can appreciate how upset this was for you.

At this point, you might want to go back to your surgeon and ask her to help you facilitate getting an appointment with someone else. In the meantime, you might want to look at the NCCN guidelines for breast cancer treatment since you know your Oncotype score:

https://www.nccn.org/patients/guidelines/content/P...

I wish you the best as you go forward.

Dx 11/15/2019, IDC: Cribriform, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (FISH)
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Oct 5, 2021 01:00PM macdebbie wrote:

Hi jhl. My BCS told me after I met with one MO at the practice I was just at they could not facilitate a meeting with another MO in that practice because it was against the oncology practice's rules. I only got in to see this guy today because of a PA that works there that happened to see that I was looking to find an oncologist.

The only thing I can do now is go back to the 2nd guy who was 10x better than this guy, or ask my BCS who in this practice she would recommend (she did tell me the guy I met with was one of two MOs she would have "matched" me with). Whether they allow a consult with another in the same practice or don't allow it like the practice I was just at I don't know. Might be awkward though.

Were my questions unreasonable - wanting to know recurrence rates and side effects of meds and why he chose one over the other for me? When I asked my BCS about recurrence rate she told me she could speak about a NEW occurrence, but for the others, she'd defer to the oncologist. There was no Oncotype score. This MO said they couldn't find anything on the sample to type as it was too small.

Dx 7/29/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/13/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy
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Oct 5, 2021 01:22PM exbrnxgrl wrote:

No, my friend, nothing you asked was unreasonable. You mo will be the person you end up having the longest relationship with so IMO, it is very important that you feel comfortable with that person. I am also someone who asks lots of questions and wants to learn about all aspects of my care. My first mo, head of oncology dept., was likely competent but he sort of dismissed my questions with a “ Don’t worry about it little lady” attitude. My ro not only recommended an mo he thought would be a better fit but he even made the appointment for me! I’m a Kaiser member so all doctors are on the same computer system so my care is well integrated. What a world of difference a new mo made! Any time I mentioned or questioned something she would immediately print out articles or research to help me understand things. After 8 years she had the nerve to move back to her own country to care for her elderly parents! Just kidding but I do miss her. My new mo seems fine but due to Covid19, and no concerns on my part, I have only seen her in person once but have had a few video visits.

I can’t help you navigate the medical group policies because Kaiser operates so differently but I would run away from any group that is ruled by such restrictive and ego driven restrictions. And the doctor who wouldn’t let you record the visit? Run twice as fast!

Seriously, you are not asking for anything unusual or outrageous. I am sure you are quite frustrated but having a relationship with an mo who makes you feel comfortable, confident, and honors you as a person has been very important to me and many others. Take care.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Oct 5, 2021 01:54PM jhl wrote:

Debbie,

I have read much of what you have written about your experience so far and my assessment is you might misjudge the timing of your questions. That does not discount that this MO had poor bedside manner. From what I can see, he indicated to you the standard treatment following NCCN guidelines - radiation followed by an AI. You mentioned 'contraindications' however there are very very few contraindications to this treatment plan. What you were actually wanting to discuss were your concerns about side effects. He did say he would address the osteoporotic side effects with another drug if necessary. Again, this is all very standard treatment.

I get that you feel your health history puts you in a separate or precarious situation. However, there are thousands - far too many thousands of people just like you who are treated with this standard therapy. I think you have just enough background to make yourself worry but not enough specific background to trust these physicians who are trying to save your life. Spend some time reading the link I gave you about the NCCN guidelines. These are the recommendations that are followed across the US as well as world wide. They have worked for millions of women. Of course, you have the option of not accepting any treatment of those that are offered. That is always a choice and there are representative women on this site who have made that choice. You can freely read their stories here.

As far as recurrence, without an Oncotype, you can see what the rates are on this BC.org article:

https://www.breastcancer.org/research-news/lumpect...

Rather than start over with another MO, would you consider making another appointment with this guy and just say I felt I didn't get enough time to express my concerns (not contraindications)? I really want to trust what you say but I'm worried .....

Again, I wish you well,

Jane

Dx 11/15/2019, IDC: Cribriform, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (FISH)
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Oct 5, 2021 01:55PM macdebbie wrote:

exbrnxgrl - Thank you SO much! I don't feel like a crazy person now just a person overwhelmed by a breast cancer that wants someone to listen to them and show some compassion and understanding.

At least I have 6-8 weeks to figure this out. I also find it very odd that a potential patient is not allowed to interview more than one doctor in the practice. How are you supposed to decide? They are getting money for the visit so what do they care?

My choices are to ask my BCS who at the other practice she would have referred me to - she said the person I saw (not this MO, another one at another practice) was one person she thought would be a fit, and there was one other she thought would be a fit. I just don't want her to think I'm some whacko that can't get along with anyone.

The other option is just to go back to the 2nd person I met with who was a bit arrogant, but at least let me ask questions. OR, I could ask my RO who I meet with Friday, although she said she "Loves" the person I just met with, and when I tried to pin her down for a recommendation she kind of danced around the question and said "they're all good". I don't know why doctors are weird about saying who they think would be the best fit for someone.

Thanks again for your thoughts.

Debbie

Dx 7/29/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/13/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy
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Oct 5, 2021 02:14PM macdebbie wrote:

jhl, thanks but I am not going back. I can't work with a doctor that is so dismissive.

There ARE contraindications, which are stated as "Before taking this medication, tell your doctor if you have or have ever had..." Those are important considerations. One person's health history may match perfectly fine with an AI, another's may match better with Tamoxifen. It's supposed to be a collaboration, with the risks of each matched to both drugs to see which presents the least amount of risk to the patient.

AIs have "contraindications" of High Cholesterol, Diabetes (I have), Osteoporosis (I have), Heart Disease (I have) High Blood Pressure (I have), Kidney Problems (I have) and Liver problems. There have been lots of white papers recently about the cardiac issues now being found with AIs.

I don't think it's unreasonable to address these - hence the "tell your doctor...." message about the drugs".

I printed out a "Questions to ask your Oncologist at your meeting" - from this website which had 5 basic questions - 1) For my situation, what are the benefits and risks of AIs?, 2) For my situation, what are the benefits and risks of Tamoxifen? 3). Do you think an AI or Tamoxifen makes more sense for me and why?, 4) Can you compare the side effects of Tamoxifen with the side effects of AIs? and 5) How many years will I take hormone therapy. He answered one of these questions. And only when I pressed him (and I could tell he was aggravated) did he say if I had taken birth control pills with no blood clots, I had a very small risk of blood clots with Tamoxifen.

And not answering my questions about recurrence rate I find unconscionable. I am a scared cancer patient. My BCS surgeon TOLD me to ask him about recurrence rate saying that was his purview. And recurrence rate ties into drug treatment. Everyone has a right to that information in order to make an informed decision.

Dx 7/29/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/13/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy
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Oct 5, 2021 03:31PM exbrnxgrl wrote:

macdebbie,

I understand what jhl is saying and agree in some ways. However, for me, regardless of medical expertise or recommendations for treatment an important quality in an mo was that they listen to me, don’t dismiss or minimize my questions or concerns, and respect my intelligence. I have no medical background but I am reasonably intelligent and understand how to read/interpret research (Many of the same skills I use to evaluate educational research can be applied to medical research). I don’t do well with docs who are condescending, talk down to me, or have egos that interfere with my getting the best care possible.

I know some folks would not care so much about these things. My own mother hated her ob/gyn but because I was born healthy she believed that she should use him for her subsequent pregnancies as that would somehow guarantee healthy babies. I need to have a doctor/patient relationship based on mutual respect and understanding of me as an individual. I am stage IV so this is going to be a lifelong relationship but I think lower stages deserve the same. Not letting you record a visit has nothing to do with you and everything to do with his ego. I have never had anyone involved in my bc care not allow a recording. There is so much info to absorb and understand that most doctors should welcome the recording as it gives you a chance to review what was said and become an informed patient. Take care.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Oct 5, 2021 03:35PM Harley07 wrote:

@macdebbie - I'm sorry the MO search is causing such heartburn.

For reference, I like my MO but in my 3 visits with her she has refused to provide a risk of recurrence rate. I'm not sure why but sense it may be my recurrence risk is so low she didn't want to tell me for fear of my stopping AI. All she will tell me is that an AI reduces the risk by 30-50%.

My tumor was 5mm but I have a genetic mutation and strong maternal family history of BC. The MO told me the tumor board only recommended an AI due to the genetic mutation. I questioned the MO on the NCCN guidelines that a tumor of 5mm or less to 'consider' endocrine therapy. She responded that she doesn't recommend endocrine therapy for tumors <5mm and only considers it for 5-10mm. This contradicts the NCCN guidelines I've seen. Although my age (64) may factor into this.

Good luck on the MO search

RAD51D mutation Surgery 11/5/2020 Lumpectomy: Right Dx 11/10/2020, IDC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/20/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/7/2021 Hormonal Therapy 2/8/2021 Arimidex (anastrozole)
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Oct 5, 2021 04:08PM - edited Oct 5, 2021 04:33PM by Beesie

macdebbie, there was nothing wrong with your expectations of the appointment. You had the expectations of a patient who is engaged in her treatment plan and who is trying to be educated so that she can make the best health decision for herself.

Over my 2 diagnoses I've seen 4 MOs, thanks to retirements, MOs partnering, etc.. I always arrive at my appointments armed with questions and I have never had an MO refuse to answer or be too busy to answer. I have spoken with 3 of the 4 MOs about my risk levels (haven't yet had a need to talk about risk with my current MO) and all have been very specific about MY risk, not giving me some generic “endocrine therapy reduces the risk by x%." Thinking about it, with 2 of the MOs (1 for each of my diagnoses) the discussion has included absolute risk, relative risk reduction and absolute risk reduction.

You are asking for information that you need to make your treatment decision - and it is your decision. The MO recommends. You decide. If you have questions about the MO's recommendation, the onus is on the MO to answer those questions as best he/she can. That is the MOs job.

I've been on this site a long time. Not much ticks me off more than hearing about MOs who treat patients without respect and don't acknowledge that patients have a right to get the answers they need to make and be comfortable with their treatment decisions.

My advice is to either lay down the ground rules to this MO to establish a relationship that works for you going forward, or find another MO.

Edited for typos only

Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Oct 5, 2021 04:22PM Rubytoos wrote:

Your expectations were beyond reasonable. I worked with scientists across different disciplines for much of my career, some were the foremost experts in the world at what they did. A really good doctor is not put off by questions, and more importantly, while guided by the research/science, does not have a cookie cutter approach to treatment like this person. Having said that, some people have better bedside manner than others. But that is not what happened here. I wouldn't go back. Picking a team that you have confidence in for such an important chapter in your life is of supreme importance. There may be moments along the way where you disagree, have concerns, whatever. A great doctor will help you find common ground and treat you, not the numbers. So your instincts are correct.

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Oct 5, 2021 04:29PM moth wrote:

just want to say you can look at recurrence risk at Predict https://breast.predict.nhs.uk/tool


I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Hormonal Therapy 12/15/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/2/2021 External: Bone
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Oct 5, 2021 04:44PM macdebbie wrote:

Thx moth. This is very helpful. I love the "use in consultation with your doctor". What does one do if they won't even look at it, discuss it with you? Just blowing off steam... Thx again!

Dx 7/29/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/13/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy
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Oct 5, 2021 04:47PM macdebbie wrote:

Thx Rubytoos. I think I have to trust my gut. This just isn't going to work. I have doctors I get along great with and yes, sometimes we have a difference of opinion, but there's always a discussion. Or I'll mention something I've read and they will say "the problem with that is that "X" and so what I recommend, or what I have found to be the case is "x". I just don't understand not being willing to compare two drugs for a person with regard to how they relate to that person's other medical problems and helping the patient come to an informed decision based on the information they provide them. Is that what a doctor is for?

Dx 7/29/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/13/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy
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Oct 5, 2021 04:53PM macdebbie wrote:

Thank you Beesie. I didn't feel my expectations were out of line - a simple request to compare treatment options and discuss how they relate to me and my medical history and which they would recommend for me and why. As Dr. Love said, "What matters most is that you have accurate data to work with and ALL the data".

I think I am going to trust my gut and not go back. I didn't have a good feeling at the first meeting, and I brushed it off and attributed it to "quirks". But this is too serious an issue not to have someone that I can converse with and feel that I am "bothering" them if I ask a question.

Dx 7/29/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/13/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy
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Oct 5, 2021 05:01PM macdebbie wrote:

Thank you Harley07. I'm curious what you saw in the NCCN Guidelines. I printed out the patient guide and it says for tumors under 5mm, and no positive lymph nodes, to "consider" endocrine therapy and if over 5mm and gene test not done, recommend endocrine therapy or chemo followed by endocrine therapy.

Now that you raise that point, it raises a question. I am in the first category, which it's a "consider", which I definitely am considering very seriously and will likely do, but since my tumor was too small for Oncotype, how does one make a decision without knowing their recurrence rate so they can see if the 50% reduction that is quoted for endocrine therapy is worth the risk - for them - that the side effects pose, i.e. if the recurrence rate is 2% and the endocrine therapy reduces it to 1%, is that worth the potential of serious side effects?

Dx 7/29/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/13/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy
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Oct 5, 2021 07:23PM RatherBeSailing wrote:

macdebbie -

Everyone here has given you great feedback.

I will add that my MO would spend hours with me if needed. But, like Harley07, she never told me recurrence risk and, when she wanted me to start an experimental drug I had to drag the statistics out of her. As you said, how do you know how effective a relative risk reduction will be for you if you don't know your absolute risk?

I think some hospitals/practices don't like going into detail because some patients can't process the information, or they don't want to scare patients but rather want them to feel everything will be okay - or they simply don't want arguments.

As jhl said, it does seem the MO is following NCCN guidelines. Try and remember that most of us, despite the research we do, don't have the depth of knowledge a trained oncologist has. While your tumor is small, the grade 2 may be leading the MO to recommend AIs. Also, all doctors get grumpy when they feel patients aren't following their advice, and the MO's have a critical goal: to save your life. But I also think some oncologists and centers take that mission with blinders on, and a disregard for the consequences treatment sometimes brings. You certainly have the right to ask for clarification.

It sounds as though you are doing research and keeping track of your health. But does your oncology team have complete records from your other physicians? Your MO is not likely to get into a discussion on whether AI's are appropriate based on your account of your co-morbidities. He is going to want to see your medical records to get a full and accurate picture. So if he didn't have that information, it could be a possible - and only partial - explanation for why he was dismissive.

Finally, you can always go to your cardiologist and endocrinologist and ask them what they think. They know you best, understand the extent of your other conditions, and perhaps can consult with the oncologist. You may find they tell you to try the AI, that they can monitor the situation and make certain you're okay. You can always stop the AI if there are issues.

I'm not excusing what seems to be dismissive behavior on the part of the MO. You need to feel comfortable with your provider. The best ones are patient and practice shared decision making. Just be prepared that you may get the same treatment plan from other MOs.

Wishing you the best.

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Oct 5, 2021 08:31PM macdebbie wrote:

Hi ratherbesailing, Thanks for your thoughts. Yes, he has all my medical info, as he's part of the hospital system I go to and everything is available to him in the portal. Plus when I first met him, he went through ALL of my medical history.

What he said at that first appt. is that he would lean towards an AI because the side effects of Tamoxifen could be fatal, whereas he could "fix" any issues with AIs. I knew nothing about either drugs at the time, so had no comment.

It's interesting the different takes - the first MO I met with at that practice told me he would give me Tamoxifen because of my osteoporosis, rather than have me have to take two drugs (and AI and bisphosphonate). I looked at the NCCN guidelines. I didn't see that they recommend one Hormone Therapy over the other, but likely missed it as it's been a long day.

I've since learned that AIs (some more than others) have "Very Common" side effects of cardiac events, including heart attacks. Those can be fatal as well. So that's what I was trying to clarify today, but he said he didn't know anything about any cardiac issues, and wouldn't discuss the white paper by the AHA.

Good thought about meeting with my cardiologist and endocrinologist. I had that thought as well today.

Dx 7/29/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/13/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy
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Oct 5, 2021 10:03PM typhoon wrote:

macdebbie - I'm sorry you've had difficulties finding the right oncologist! As others have pointed out, it's important that you feel comfortable with your doctor, and that s/he listens to your concerns. The thing is, you are probably going to get the same recommendations (AI/bisphosphonate or tamoxifen) from any MO that you speak to. The manner in which they give the recommendation may differ from MO to MO, but the recommendation will be the standard of care. I agree with RatherBeSailing - your cardiologist and endocrinologist are much better positioned than an MO to discuss the specifics of how those recommended medications might affect your other health conditions, and - since your other health issues seem to be driving your decision-making process here - to guide you towards the right decision for your specific circumstances.

One other consideration to think about: your diagnosis is very similar to mine, and I will say that at this stage of the game, I have very little interaction with my MO. I've met with her twice - once on Zoom, right after my surgery, and a second time in person. While she was very willing to answer all of my questions in our two meetings, there's been no need for me to see her at all since January of this year, and that's pretty standard for people like us with fairly straightforward, early stage diagnoses. My most important oncology relationship by far is with the breast cancer specialist RN in my MO's practice. The RN is who I see for check-ups, and who manages everything like the Dexa scan, bloodwork, Zometa infusions, etc. The RN is the person who answers my questions (we do messaging over the patient portal and the occasional phone call), forwards studies and other information to me, and is easily accessible. I know that the MO oversees everything, and the MO and I will occasionally exchange messages, but the RN is my key point of contact, and I know several other people with very early stage BC diagnoses who have the same sort of dealings with their oncology practices. My PCP is actually friends with my MO, and has been forward-leaning about informally consulting with the MO as needed about my osteoporosis and other issues. This is all a long-winded way of saying that the relationship with your MO might not be as substantive as your relationships with other doctors, and certainly not as active and substantive as the relationships that BC patients at higher stages have with their MOs.

Since you are going to have to face the same decision no matter who your MO is, why not make the decision now in consultation with your other doctors, get started on whatever course of treatment you decide is best, and then take your time about finding the right MO to suit your long-term needs?

Dx 10/23/2020, DCIS/IDC, Both breasts, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 12/9/2020 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 1/14/2021 Arimidex (anastrozole)
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Oct 5, 2021 10:52PM Harley07 wrote:

@macdebbie - I read the NCCN guidelines as if the tumor is 5mm or less to “consider" endocrine therapy. My tumor is 5mm and I had a Mammaprint which came back low risk. I think the reason they did the Mammaprint was because I agreed to be in a study, so Agendia (mfg. of Mammaprint) covered the cost. Otherwise, insurance does not cover the test for tumors of 5mm or less. Yesterday I had a 6 month appointment with my MO and asked why she felt it was important I take an AI given the NCCN guidelines to 'consider' endocrine therapy. The MO said she and the tumor board recommended an AI because I have a genetic mutation that increases my risk for BC. The genetic mutation was the deciding factor to prescribe an AI. What I thought was odd was that she only considers endocrine therapy for tumors that are 5-10mm (NCCN guidelines specify endocrine therapy). It may just be the way I interpreted her comments.

I'm having bone & muscle pain but other than May/June of this year, it has not been debilitating. I also have arthritis in my knees and back, but the pain feels worse since I started on an AI and some days my hands lock up. I walk 2-3 miles a day and that seems to help. The MO offered a couple of options: (1) take a break from the AI for 2-3 weeks to see if the pain clears up or (2) switch to exemastane or (3) switch to Tamoxifin. I've thought of discontinuing the endocrine therapy entirely but don't want to regret that a few years down the road. So I've stayed on anastrozole for now.

My MO takes time to discuss questions and is not in any way dismissive. But she won't specify MY risk recurrence which would be very helpful to make an informed decision about AI use going forward. I understand your point about making an informed decision without an Oncotype score. I have used the Predict calculator and it shows my life span is basically the same with or without an AI. However, it does not account for my genetic mutation. https://breast.predict.nhs.uk/

I hope you find an MO that answers your questions and allows you to be in the drivers seat regarding your health.

RAD51D mutation Surgery 11/5/2020 Lumpectomy: Right Dx 11/10/2020, IDC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/20/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/7/2021 Hormonal Therapy 2/8/2021 Arimidex (anastrozole)
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Oct 5, 2021 11:48PM Beesie wrote:

To clarify for everyone, endocrine therapy (Tamox or AIs) provides 3 benefits:

1) They reduce the risk of a local (in the breast area) recurrence, generally by about 50%. For those who've had a MX, this risk may be as low as 1% but for those who've had a lumpectomy + rads, this risk is usually more in the range of 8%-12%. Grade, size of tumor, surgical margins will all affect this risk.

2) They reduce the risk of a distant recurrence, generally by about 1/3rd. This is the risk that we all fear the most. AIs generally perform a bit better in this area; my MO said that AIs reduce risk by ~35% vs. ~30% for Tamox. For those who facing a significant risk of mets, this small difference in efficacy can be important. For those who face a low risk of mets, the absolute difference between Tamox and an AI might net out to be less than a 1% reduction in risk.

3) They reduce the risk of a new primary breast cancer; results vary based on the study but I believe on average the risk reduction is approximately 50%. For those who've had a BMX, the risk to develop a new breast cancer can be as low as 1%-2%. But for those who've had a lumpectomy, this risk can be significant. All of us who've been diagnosed with breast cancer are at higher risk (than the average woman) to be diagnosed with a new primary breast cancer. This second diagnosis might be a different type of breast cancer and it could be in either breast. A new diagnosis could come anytime during your life, although for all women our highest risk years are when we are in our 60s and 70s. My MO told me that my risk to develop BC again was about double that of the average woman my same age who'd never had breast cancer before; the following study seems to confirm that: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2720990/ I was 49 at the time of my first diagnosis; the remaining lifetime risk for the average 49 year old is 11%, so my MO estimated my risk to be about 22%, although I had other factors that might have increased this risk. In addition to having a personal history of breast cancer, a family history of breast cancer, genetic mutations, and breast density are some of the other factors that can drive this risk up. (And yup, I drew the short straw and was diagnosed a second time, 13 years after my first diagnosis.)

For each of us, even if we have a similar diagnosis, our risks in these 3 categories may be different, because of a lumpectomy vs. mastectomy, or having vs. not having a genetic mutation or a family history of breast cancer, or dense breasts, etc..

Harley, it sounds as though your MO recommended the AI largely because of risk #3 and the fact that you have a genetic mutation which increases your risk to be diagnosed again. As an FYI for everyone reading, PREDICT only projects risk for risk #2. To my understanding, while having a genetic mutation might be the reason someone developed breast cancer, once you have BC, genetic mutations generally do not affect/increase the risk of mets; this is why genetic mutations aren't factored into PREDICT. New primary risk is a completely separate risk that is not included in the PREDICT model, just as local recurrence risk is not included.



Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Oct 6, 2021 09:04AM Harley07 wrote:

@Beesie - thank you for the thorough summary. You are correct that my MO prescribed the AI for #3. Without actual numbers from my MO I presume my risk of recurrent or new BC is low based on stage, grade and Mammaprint results. Coupled with my age I presume I'm getting little benefit from an AI or Tamoxifin and am therefore pondering what to do going forward.

RAD51D mutation Surgery 11/5/2020 Lumpectomy: Right Dx 11/10/2020, IDC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 11/20/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/7/2021 Hormonal Therapy 2/8/2021 Arimidex (anastrozole)
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Oct 6, 2021 09:24AM macdebbie wrote:

Harley07, I was just re-listening to the tape of my post op with my BCS. She gave me the New Occurrence rate, which in my case she said was @ 1% per year. She told me to talk to my MO though about the Local Recurrence and Distant Recurrence Rates. You may want to see if your BCS can provide you at least with the New Occurrence rate.

Dx 7/29/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/13/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy
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Oct 7, 2021 07:09PM kksmom3 wrote:

I had a 3 mm tumor. I was put on letrozole and have completed 2.6 years. I was glad to see the NCCN guidelines of endocrine therapy being "considered," as I'm having too harsh of side effects and plan to go off the blockers. It seems not so scary now.

Dx 8/8/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 9/30/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Oct 21, 2021 06:53PM macdebbie wrote:

I finally have some HAPPY news. I had an appt. today with the MO who I had originally seen 2nd (I saw three). His office was kind of a mess, and I felt like I was getting the run around and when he called me back he seemed aggravated. But I just decided I couldn't work with MO #3. I don't do well being dictated to and not being allowed to ask ANY questions. So back to #2 I went.

I was really nervous he would just say like #3 "we're going to put you on "X" hormone blocker and we'll follow up in 3 months" end of story. But he didn't. He listened to my concerns, told me it's hard to feel like you have no control, and that he would work with me. We didn't even talk about meds this meeting. Just in general. More about recurrence rate, and the benefit of the meds vs the potential side effects. He said my risk is very low for recurrence (less than 5% likely) but he still thinks it's worth trying the a hormone blocker.

He said "continue healing, go forward with your radiation, and we'll meet mid Dec and go over all the options then and figure out what's best." He said he would be will to start me on a reduced dose and it's MY decision if I stick with that or would be OK increasing the dose.

His practice also lets my husband come to the appts. which is huge for me, and he lets me tape the meetings so I can pay attention and listen and not be distracted by trying to furiously write down everything he says.

I am feeling SO much better. So relieved.



Dx 7/29/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/13/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy
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Oct 21, 2021 09:42PM wondering44 wrote:

@macdebbie,You have every right to have every question answered by your MO. Your MO has no right to dismiss any of your concerns.

Last month I met with a BCS for a lump in my non-cancer breast. He said to me, " I don't know why you are here." I picked up my stuff and left.

The next day I filed a complaint with the department of Patient Advocacy. I told the Patient Advocate when I filed the complaint that I am an educated woman. I am a fierce woman. It is not acceptable or professional for any doctor to dismiss me as a cancer patient. FYI - Those complaints go to a committee for an investigation. I also disputed the bill that my insurance company paid for that visit due to his lack of patient care.

  • You do not have to have the MO at the same cancer center you get surgery or other treatment at.
  • You can request a different MO at the same facility. You may have to run it up the ladder to a supervisor to get it.
  • You are the patient. You pay for their services. They work for you.
"I don't get to control my cancer. I do get to control how I choose to live each day with cancer." - Me Dx 7/8/2021, DCIS, Right, 1cm, Stage 0, Grade 3 Dx 7/8/2021, IDC, Right, 2cm, Stage IB, Grade 2, ER+/PR+, HER2- (FISH) Surgery 8/18/2021 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Dx 8/23/2021, IDC, Right, 6cm+, Stage IIB, Grade 3, 0/4 nodes, ER+/PR+ Dx 8/23/2021, DCIS, Right, 6cm+, Stage 0, Grade 3, 0/4 nodes Radiation Therapy Whole-breast: Breast, Lymph nodes

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