Has anyone changed Dr's?
I had my three month follow up with my breast surgeon on Monday. It did not go well. After I left I felt like I had aggravated him and he aggravated me. I think one area where we are not in sync is with my diagnosis of LCIS. When I asked him about it his response was that it was a high risk marker. But, he does not seem concerned about it at all. I am more freaked out by my LCIS than my DCIS.
Am I being unreasonable?
Comments
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Dear InStitches:
You need to feel comfortable with your MO. You will be seeing your MO for many years so you must trust your doctor. If you don't feel that you can talk to your doctor about your concerns then you absolutely should change doctors. The only problem that you may run into is that some MO's may not want to "take" a patient from another doctor. Please "run" to find another doctor asap. You will be glad that you did.
Good luck.
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This is your BS, and you want to be comfortable with all your doctors, so switch. You know sometimes people aren't just right for us!
And don't give it a second thought.
I met two other MOs before I met one I liked.
Good luck,
Ali
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I appreciate your reply and it brings up something else strange. My BS has not referred me to a MO. I do not know why. He did prescribe me a Tamoxifen on my visit Monday. Of course, I think it riled him up when I asked why Tamoxifen instead of an Aromatase Inhibitor. His response was that I am stage 0 and AIs are for stage 1 and higher. Interestingly though I have found others on this site who are using AIs for DCIS and LCIS.
One thing I do believe is that he is a great breast surgeon.
I will see my gyn on Wednesday and will talk about it with her.
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InStiches, if I felt that any of my drs was not answering all my questions or was in any fashion being dismissive of my concerns I would not hesitate to switch doctors. If that's how you are feeling, I'd move on if I were you. Also, it's not true that AIs are only prescribed for stage 1 & beyond. I ended up doing a PBMX for an LCIS diagnosis, but if I had not done so, both the BS and MO would have advocated for an AI when I reached menopause. We had lengthy conversations about that and I also did my own research. You have to consider your specific diagnosis, where you are in terms of menopause and the potential quality of life (or more serious side effects) you might possibly experience with various med choices. Check all that out and go in with all your questions enumerated. Personally, I found the consult with my MO to be very illuminating. There's a reason why they are a specialty. What I wanted to better understand from the MO was the best guess at my baseline risk assessment and then the percent by which each med choice could reduce my risk based on how long I'd have to take the meds and then....what is the science supporting the length of time one can expect to experience the benefits of risk reduction after completing the meds. There are uncertainties with any choices here and ultimately you have to try to summarize what's known and digest which choice you think you can live with.
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InStiches, I should have mentioned that I believe it's still true that the FDA has not yet approved the use of AIs for chemo prevention(for risk reduction on high risk patients), but both the BS & MO told me they have not had trouble getting insurance to cover it. Maybe what's where your surgeon was coming from when he told you that. Maybe he's thinking the fact the FDA has not approved AIs for high risk patients who have not had invasive disease would pose an impediment or that it is an indication that it's not yet considered "standard of care" for high risk patients. I believe the FDA does endorse the use of AIs for risk reduction of recurrence for patients who have already experienced invasive disease.
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In general, and there are LOTS of exceptions. You take Tamoxifen if you are premenopausal and an AI if you arenot.
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inStitches - I don't think that is a very good answer, he should have explained why
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hi. i am on my 4th PS for different reasons So yes, if you need to change docs then do that.
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Institches of course you are being reasonable! His explanation does not make sense to me. IMO you should have a MO not just a breast surgeon. I would advise you to get a second opinion or find a MO at a university based teaching hospital. Good luck. Keep us posted....
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I settled on the second BS and third PS I interviewed. My first BS was supposedly regionally renounced, but didn't offer me more than 5 min appts. I also saw some of her results, which were frightening.
A friend referred me to her surgeon, who also had an excellent reputation. He ended up being the keeper. I interviewed 2 plastic surgeons until I found a breast reconstruction specialist who could perform what I wanted - a nipple sparing straight to implant. I wasn't that large and didn't want to be, so why go through expanders? I had plenty of skin with the breast shrinkage from Femara.
I think an adjunctive med makes sense. I had LCIS for awhile before it went invasive. Since ILC can be so aggressive (mine was) when it takes off, prevention seems vital. Find a Dr. you like. They work for us.
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leslie3 - oh that's news to me, that Femara shrinks breasts. I'll have to keep watch
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InStiches, my one onc consult basically told me I had "one tny little spot of LCIS" and to "go on, live my life", probably because he couldn't prescribe me tamoxifen or Evista because I had a prior PE during ovarian cancer treatment. He was an ass. My surgeon has recommended an AI. We know the "one tiny little" thing is BS because the assumption is that if you have it in one spot it can be assumed that it is everywhere in both nreasts
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Dear InStitches:Call your local hospital and ask to speak with the Nurse Navigator. The Nurse Navigator will recommend several MO's (or any other specialist that you may need - such as a Radiologic Oncologist - RO, etc.) in your area. I found all of my local doctors through my Nurse Navigator who is absolutely phenomenal. I had my surgery at M.D. Anderson Cancer Center in Texas but I live in Florida. Therefore, my Nurse Navigator was invaluable to me because my doctors in Texas could not recommend any local doctors. I saw one MO and I did not like her so I changed MO's before my treatment started. It was the best decision that I ever made. My current MO saved my life and her tx strategy was radically different than the first MO whom I saw. I am so lucky that I trusted my gut and changed doctors. My MO is the absolute best but she won't take patients from another doctor. I was only able to become her patient because I was newly diagnosed and I had not started treatment yet.
My understanding is that many people take tamoxifen. Talk to your doctor and find out why he is prescribing tamoxifen rather than an AI. I am taking an AI because I was not able to take tamoxifen. That is why I had the oophorectomy. I had to be medically induced into menopause. If you are not menopausal yet then tamoxifen is usually what is prescribed because you must be in menopause to take an AI.
Good luck.
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Hi InStitches:
The administration of medicines for treatment and/or chemo-prevention of breast cancer is the area of expertise of Medical Oncologists ("MO"):
http://www.cancer.net/navigating-cancer-care/cance...
This is a rapidly changing specialty area, so consultation with an MO seems like the best course of action to obtain the most current advice in light of your particular presentation, including the presence of both DCIS and LCIS.
Please do not hesitate to obtain a consultation with or request a referral to an MO to ensure you receive comprehensive and up-to-date answers to all of your questions. If a referral is needed, you can say that you'd like additional input and further discussion of the risks/benefits of tamoxifen (or a "second opinion"). You can ask the MO about recent studies, and whether there are any reasonable alternatives for you, as well as seek further input regarding your personal risk in light of your presentation and family history, and the potential risk reduction(s) that may be achieved by any proposed intervention(s).
There was indeed a recent trial (BIG 1-98 Trial) that investigated the relative effectiveness of letrozole (an aromatase inhibitor) compared with tamoxifen for patients with invasive ductal or lobular carcinoma ("IDC" or "ILC"). Such a study may not speak to DCIS or LCIS, a possible discussion point with an MO (Full text available at no cost via Patient Access option (requires registration)):
Article: http://jco.ascopubs.org/content/early/2015/07/24/J...
Generally, tamoxifen is used in pre-menopausal women because it works at the site of action of estrogen on cells, regardless of the source of production (e.g., ovary, adipose tissue) (But see, general comments below on DCIS*). In contrast, aromatase inhibitors work by inhibiting the production of estrogen from tissues other than the ovaries (e.g., adipose tissue) through inhibition of the enzyme aromatase, which converts certain precursors into estrogen. However, in pre-menopausal women, the vast majority of estrogen is produced by the ovaries, independent of aromatase activity. So, in order to take an aromatase inhibitor ("AI"), a pre-menopausal woman would also need to either surgically remove both ovaries or knock out their estrogen-producing function with irradiation or a second drug ("ovarian ablation" or "suppression"). See for example, this article regarding invasive breast cancer in which pre-menopausal women receiving exemestane ("AI") also received ovarian suppression (triptorelin, bilateral oophorectomy, or ovarian irradiation):
Article: http://www.nejm.org/doi/full/10.1056/NEJMoa1404037...
The following general comments focus on pure DCIS:
*There are differences between DCIS and invasive breast cancer with respect to endocrine therapy. It is my understanding as a layperson that tamoxifen is currently indicated and FDA-approved for DCIS regardless of menopausal status.
[EDITED: The use of aromatase inhibitors for pure DCIS does not appear to be discussed in the guidelines for the treatment of "Breast Cancer" from the National Comprehensive Cancer Center (NCCN), Professional Version 3-2015. These guidelines feature tamoxifen for risk reduction in the ipsilateral breast, and refer to a second NCCN guideline for "Breast Cancer Risk Reduction" with respect to risk reduction therapy for the contralateral breast. The second guideline document discusses several options for post-menopausal women, including tamoxifen, raloxifene, and the Aromatase Inhibitors exemestane (Aromasin) and anastrozole (Arimidex).
Although the guideline for "Breast Cancer Risk Reduction" (version 2-2015) notes that "Exemestane and anastrozole are not currently FDA approved for breast cancer risk reduction," it does include these drugs as available choices:
"The NCCN experts serving on the Breast Cancer Risk Reduction Panel have included exemestane and anastrozole as choices of risk-reduction agent for most postmenopausal women desiring non-surgical risk-reduction therapy (category 1). This is based on the results of the MAP.3 trial and the IBIS-II trial."
See post below from MelissaDallas re the MAP.3 trial, and my later post.]
There is a very recent 2015 abstract and some related articles regarding some results from the NRG Oncology/NSABP B-35 trial of anastrozole (an aromatase inhibitor) vs tamoxifen in post-menopausal women with ER-receptor or PgR-receptor positive (by IHC analysis) DCIS and no invasive BC who had undergone a lumpectomy with clear resection margins:
Abstract: http://meetinglibrary.asco.org/content/146144-156
Article: http://www.onclive.com/conference-coverage/asco-20...
Article: http://www.ascopost.com/ViewNews.aspx?nid=29595
As noted above, it is possible that use of a particular aromatase inhibitor for DCIS is not yet FDA-approved and would be "off-label", a question which should be confirmed with an MO. The latter article notes a possible age effect and there may be other issues or limitations, such as the preliminary nature of the report.
The above is provided as general information only, all subject to confirmation with an MO. Please don't hesitate to seek expert advice.
BarredOwl
[P.S. You can keep your surgeon, and just add an MO to your team.]
[P.S.S. Technically, you are seeking a "first opinion" from an MO.]
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Women that live in suburban areas or rural areas will not have the opportunity to find a group of breast surgeons and plastic surgeons to get second opinions from.In my town there was no bs or ps but in a larger town 40 minutes away there was one bs and one ps.While traveling to an urban area is an option, if you are working and have a family at home that may not be doable.
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I was out walking and thinking about this and I came up with reasons I want to drop a doctor. I want a doctor who exceeds job requirements : ), a doctor who cares and spends adequate time, a doctor who keeps up on my tests results and reads the reports, a doctor who is on my side! And when I meet the new doctor that's what I'll tell her/him why I'm changing.
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InStitches, I would echo what the others say and go see a MO for your post surgical treatment involving medication. When I asked my BS questions about chemo and other medication, he was very clear that was the job of the MO and not his expertise.
As far as not getting along with your BS, well, all the more reason to get a MO on board. If there is a reason you might need more surgery in future, you can make the decision then to stay with this BS or jump ship.
As far as getting along with a doctor, I might say this: they are really busy people and sometimes good doctors are not great communicators. It took a few visits for me to get comfortable with my MO. Both of my doctors are busy and talk fast, and it took a little while for me to realize that a good way to handle this was to have a list of questions and just go through them. Some of them the MO thinks are important and will spend time making sure I understand, others she dismisses, and I sort of file that away for the future. I had gone to a seminar on doctor-patient communication a couple of months ago where they recommended writing out the questions, and it helped a lot. It also took a little while for me to feel comfortable interrupting my MO and making sure she understood when a concern of mine was important. And it takes a while to figure out which questions the nurse can answer and which ones you really do need the doctor's input. I hope that's helpful: good luck!
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InStitches, you are not being unreasonable. You deserve medical providers who will explain the reasons why they are recommending one treatment option over another and take the time to answer your questions.
As others have said, it's especially important to feel comfortable with your MO. That's the doctor you'll be seeing regularly for years to come, while most patients stop seeing the BS around 6 months after the last surgery, if not sooner.
If you live in an area of the country where you have options, please talk to another doctor. Repeat as necessary until find someone who clicks with you.
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I would avoid criticizing one doctor to another, lest the potential new doctor fear to take you on. Be diplomatic and keep your goal in mind. Say what you are looking for without saying much about the other doctor.
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CHICAGO – Phase-3 results from the MAP.3 trial showed that the aromatase inhibitor exemestane reduced the risk for developing breast cancer by 65% in women at high-risk.
Additionally, researchers observed a 60% reduction in invasive breast cancer plus pre-invasive ductal carcinoma in situ, and fewer cases of cancer precursor lesions such as atypical ductal hyperplasia and atypical lobular hyperplasia in the exemestane group.
"Exemestane can be considered a new option for breast cancer prevention in post menopausal women. Women meeting the inclusion criteria of the MAP.3 trial, which would include all women over 60, and their doctors should be made aware of these important results," Paul E. Goss, MD, PhD,professor of medicine at Harvard Medical School and Massachusetts General Hospital, said. Goss discussed the findings during a Saturday press conference at the 2011 ASCO Annual Meeting. "For women outside the criteria, further data is clearly needed. Because of the significant reduction of breast cancer and the excellent safety profile, exemestane has more potential for wider scale implementation than the selective estrogen receptor modulators."
From 2004 to 2010, 4,569 postmenopausal women with one or more risk factors – Gail score >1.66%, prior atypical ductal hyperplasia, atypical locular hyperplasia, lobular carcinoma in situ or DCIS with mastectomy or age over 60 – were randomly assigned to exemestane (Aromasin, Pharmacia and Upjohn) or placebo (n=2,248).
At a median follow-up of 35 months, the annual incidence of invasive breast cancer was 0.19% for patients assigned to exemestane (n=2,240) vs. 0.55% for patients assigned to placebo (HR=0.35, 95% CI 0.18-0.70). There were 10 diagnoses of DCIS in the experimental group vs. 27 in the placebo group, and one diagnosis of LCIS in the experimental group vs. five cases in the placebo group.
Patients assigned to exemestane had superior outcomes when assessed by Gail score, age, BMI, prior LCIS and prior DCIS. The annual incidence rate of invasive breast cancer or DCIS was 0.35% with exemestane and 0.77% with placebo (HR=0.47; 95% CI 0.27-0.79). There were 20 diagnoses of invasive breast cancer or DCIS in the exemestane group vs. 44 in the placebo group.
We looked for serious toxicities and we did not find any," Goss said. "When we unblended the results, we found that that incidence of osteoporosis, cardiovascular disease and clinical fractures were identical in the two arms."
Incidence of hypercholesterolemia was also equal in both arms. Toxicities such as hot flashes, fatigue, sweating, insomnia and arthralgia were slightly more common in the exemestane arm, but Goss said the clinical difference was only 3% and did not appear to affect self-reports of overall health-related quality of life. – by Jason Harris
For more information:
- Goss PE. #LBA504. Presented at: the 2011 ASCO Annual Meeting.
Disclosure: Dr. Goss reported receiving honoraria from GlaxoSmithKline, Novartis and Pfizer.
Exemestane gives us another option to improve chemoprevention for women who are at high-risk for breast cancer. At this point, we can utilize tamoxifen or prophylactic surgery and each option has positive and negative aspects. This is another medical therapy we can add into our armamentarium to help reduce the risk for women who are at high risk. This study, while the first of its kind, is very intriguing and should be discussed with women who are at high-risk for breast cancer as an agent to prevent this disease. We have ways to reduce the risk for this disease and we need to discuss them with patients. Raloxifene, tamoxifen – if you think about all the women who could benefit from these drugs? They're underutilized. Breast cancer is the one cancer where we have chemopreventive agents and we really need to discuss them with our patients.
- Jennifer C. Obel, MD
Medical Oncologist, NorthShore University Health System, Chicago -
My NCI Cancer Center is using Aromasin in postmenopausal women with LCIS.
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so Aromasin is better than Femara
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Marijen, tgearticle is discussing prevention in high risk groups (ADH, ALH, LCIS, DCIS), not following treatment of more advanced cancer.
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OK but...IDC is more high risk than DCIS..
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the article is about using aromasin to prevent invasive bc in women who have not had invasive bc, but who have high risk conditions (such as ADH, ALH, LCIS, DCIS). (this would not apply to your situation, as you have already had invasive bc (IDC).
anne
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Maybe.
Aromasin (chemical name: exemestane) is an aromatase inhibitor approved by the U.S. Food and Drug Administration (FDA) to treat:
- postmenopausal women diagnosed with hormone-receptor-positive, early-stage breast cancer after they've taken tamoxifen for 2 to 3 years to reduce the risk of the cancer coming back
- postmenopausal women diagnosed with advanced-stage or metastatic hormone-receptor-positive breast cancer
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Hi Melissa:
Thanks for posting the MAP.3 trial summary. The study was published in the NEJM here in 2011:
MAP.3 Trial (Text): http://www.nejm.org/doi/full/10.1056/NEJMoa1103507...
(Pdf): http://www.nejm.org/doi/pdf/10.1056/NEJMoa1103507
Correction: http://www.nejm.org/doi/full/10.1056/NEJMx110056
Interestingly, while women with "prior ductal carcinoma in situ treated with mastectomy" were eligible, women who "had prior ductal carcinoma in situ treated with lumpectomy" were not eligible. This may reflect a focus on assessing contralateral "risk reduction" (as opposed to ipsilateral events).
In connection with DCIS, the NCCN guidelines also seem to distinguish between (a) risk reduction therapy for the ipsilateral breast following breast conserving therapy (discussed in the "Breast Cancer" guideline, which recommends tamoxifen); versus (b) risk reduction therapy for the contralateral breast, for which one is referred to a separate guideline ("Breast Cancer Risk Reduction", version 2-2015). The second guideline document discusses several options for post-menopausal women, including tamoxifen, raloxifene, and the Aromatase Inhibitors exemestane (Aromasin) and anastrozole (Arimidex).
Although the guideline for "Breast Cancer Risk Reduction" (version 2-2015) notes that "Exemestane and anastrozole are not currently FDA approved for breast cancer risk reduction," it does include these drugs as available choices:
"The NCCN experts serving on the Breast Cancer Risk Reduction Panel have included exemestane and anastrozole as choices of risk-reduction agent for most postmenopausal women desiring non-surgical risk-reduction therapy (category 1). This is based on the results of the MAP.3 trial and the IBIS-II trial."
Results from the IBIS-II trial are reported here:
IBIS-II Trial: http://dx.doi.org/10.1016/S0140-6736(13)62292-8
In addition, as noted in my post above with links reproduced here, there are now some results from the NRG Oncology/NSABP B-35 trial of anastrozole (an aromatase inhibitor) vs tamoxifen in post-menopausal women with ER-receptor or PgR-receptor positive (by IHC analysis) DCIS and no invasive BC who had undergone a lumpectomy with clear resection margins:
NRG Oncology/NSABP B-35 trial - Abstract: http://meetinglibrary.asco.org/content/146144-156
Article: http://www.onclive.com/conference-coverage/asco-20...
Article: http://www.ascopost.com/ViewNews.aspx?nid=29595
I edited the middle section of my post above in view of the information in the second guideline.
As I mentioned above, this area is a medical specialty for which consultation with a Medical Oncologist is the best way to obtain the most current advice, and especially so, with the presence of both DCIS and LCIS.
BarredOwl
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I am post menopausal. And I posed my question to my BS exactly this way, " given that I am post menopausal why are you recommending Tamoxifen and not an aromatase inhibitor." His response was that AIs are only for stage 1 or higher.
But the other weird thing here is that he has not referred me to a MO. My RO mentioned 2 months ago that I should be meeting with the MO. Not knowing any better I called the MO's office to make an appointment and was told I needed to be referred. Then I called both my BS and RO office to ask about getting the referral. Finally, the nurse with my RO office called me back and said that was in the BS's court and that apparently he was not going to refer me to an MO. It is strange because a friend of mine had DCIS two years ago followed by RT and she see's the same BS and RO and the BS did refer her to the MO. What is also strange is that she is on Tamoxifen and she is post menopausal.
I have an appt with my Gyn tomorrow and will talk with her about all this.
I truly appreciate all the responses and have much to consider. Right now my follow up 3d mammogram and ultrasounds are scheduled for January 20th. I am concerned about changes in my skin on my right breast and I am happy that the BS did not just blow me off about that. I think he is taking a lot of comfort in the clean MRI from June. However, I am concerned. I am also concerned about a nodule that the radiologist noted in the left breast before my surgical biopsy.
There appears to be a lot going on in both breasts. And to make matters worse when my BS and I were discussing my concerns he pulled up my mammograms and pointed to two other areas of architectural distortion. That did not alleviate my concerns!
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Thank you for the great and very specific information. I clearly have my work cut out for me. Either I get my BS to refer me to the MO or I change doctors. My only hesitation is that when it comes to the surgery part of my care I really do think my current BS is a great surgeon.
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