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Topic: 4 Different Doctors' Views on Aromatase Inhibitors for LCIS

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: May 16, 2018 04:22PM - edited May 16, 2018 09:25PM by Lea7777

Lea7777 wrote:

Thought I'd pass on these 4 views that were shared with me over the course of a couple of months.

#1 Oncologist in USA: Advocated AIs and emphasized that they decrease breast cancer risk by over 50% for those with LCIS. Exemastane is first choice. Next choice, when Exemastane was not tolerated was Letrozole.

#2 Oncologist in USA: None of the three Aromatase Inibitors (Exemastane/Aromasin, Letrozole/Femara, Armidex/Anastrozole) are FDA approved for reduction of breast cancer in high risk patients. Both Tamoxifen and Raloxifene/Evista are FDA approved. Therefore the AIs would not be prescribed because there are no studies yet that show their effect in women who are at high risk, even though these are effective for women with breast cancer. Instead, Tomxifen or Raloxifene/Evista are good chemoprevention choices for LCIS.

#3 Cardiologist in USA: I told him I was high risk but did not have breast cancer. He said, "I would not suggest AIs for benign proliferative breast disease. Do surveillance instead."

#4 Mammogram Radiologist in UK, who is an acquaintance: AIs are too extreme for LCIS.

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May 16, 2018 06:31PM poppyseed67 wrote:

Thanks for the information. I'm curious why #1 advocated AIs that are not available in USA? Is it worth trying to seek treatment abroad if these drugs have fewer side effects? Also, #3, I am confused why a cardiologist weighed in....if you have further insights, would love to know.

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May 16, 2018 06:39PM MelissaDallas wrote:

I'll have to try to find it, but NCI advocates for the AIs because the risk reduction is dramatic and a major frustration is that so few women opt to take them. I go to an NCI designated cancer center and they offered me exemestane five years ago. Lots of drugs are prescribed "off label." They know it works. Nobody has chosen to refile an old drug for reapproval is all it means. Anyone who is at risk for clotting can't take tamoxifen or raloxifene.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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May 16, 2018 06:54PM poppyseed67 wrote:

Thank you so much. There is a history of clotting in my family and I am getting checked out to see if I have any genetic tendency. Good to know about "off label" prescriptions just in case.

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May 16, 2018 09:13PM Lea7777 wrote:

#1 advocated drugs (the Aromatase Inhibitors) that are widely available in the US and are FDA approved for actual breast cancer, but not for prevention of breast cancer in high risk women who do not currently have cancer. The AIs have been studied for reduction of cancer in patients who have cancer and are more effective than the SERMs or Selective Estrogen Receptor Modulators--Raloxifene/Evista and Tamoxifen.

No need to leave the US for Aromatase Inhibitors. As to fewer side effects from AIs, they have different side effects than the two Selective Estrogen Receptor Modulators or SERMs--Raloxifene/Evista and Tamoxifen. It looks like the lack of blood clots with AIs could be a big factor for you, Poppyseed67.

MelissaDallas is right that the use of AIs (or even SERMs) for women at high risk without cancer is low.

Here's where the cardiologist came in. After 20 days on Letrozole/Femara, one of the Aromatase Inhibitors, I noticed a pain in my heart now and then at very low level for the first time in my life. After it woke me up a few times in the night, I went to ER. All was fine but my family doc encouraged me to get a stress test, which is where I interacted with the cardiologist and asked him about AIs. I also asked him if he encountered patients with heart problems from AIs, as that is one of the side effects. He said he gets a few but not many. Another side effect of Letrozole can be indigestion and maybe that was what I had, but it centered on my heart, not in the general chest area. I am off the Letrozole.

Genetic testing is a good idea, Poppyseed67!

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May 16, 2018 09:27PM poppyseed67 wrote:

Thanks for your prompt and comprehensive reply, Lea! I practically had to twist the oncologist's arm to order blood tests. She did not want to authorize them at first and gave all kinds of condescending reasons why I shouldn't do it. Crazy, and I will be switching oncologists! Anyway, we'll see what happens.

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Jun 14, 2018 06:49AM - edited Jun 16, 2018 08:49AM by Lea7777

Let me add a #5 and #6 and revision of #1.

#5 2nd opinion Oncologist in USA - Given my circumstances (post-menopausal, and history of uterine hyperplasia) she'd prescribe Evista. She said the studies on using AIs for atypical neoplasia, including LCIS, had not yet come out. This is why the AIs are not FDA approved for reducing breast cancer for high risk cases, though the AIs are the most effective choice for women who have invasive breast cancer.

#6 Nurse Practicioner at High Risk Breast Clinic in USA - The old standard of Tamoxifen. She said AIs have not been proven for atypical neoplasia. When I mentioned my history of uterine hyperplasia, she said Evista could be a good alternative in that case. Since receiving opinions #1 - #5, I have had a bone density scan that came back osteopenia. The NP thought Evista would be helpful with that diagnosis but she added that if I did not have the breast issues, Evista would not be the first choice of drug for my osteopenia. She added that Evista can be taken your whole life for the reduction in breast cancer risk, unlike the other options. But once you stop Evista, the breast cancer risk reduction soon disappears. In contrast, Tamoxifen adds more years of protection after the drug is stopped. If I were to get invasive breast cancer, then she said Evista would be halted, and I would need to take something stronger, assuming the pathology supported it.

#1 Onocolgist in USA, Revised. After Exemastane was not tolerated and Letrozle resulted in ER visit for heart pain, she prescribed Evista. I'll start it in several weeks after I come back from a vacation. Don't want any surprise side effects while I am gone.

An umbrella comment from the BS who did my excisional biopsy: She said that women who cannot tolerate an AI at one point in their life sometimes can years later. She attributed it to changes in the body that make the drug more acceptable down the road. It does not always happen but the trend from intolerable to tolerable is apparently somewhat common. Fortunately the trend from tolerable to intolerable years later, if the AI is needed again, is not something she sees.

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Jul 7, 2018 08:43PM awb wrote:

,my pcp, my gyn, np, and first oncologist all said the evista was good for my bones (I have mild osteopenia) , as well as decreasing the risk of invasive bc, and that I could take it indefintiely. My 2nd oncologist (first one retired) recommended I stop taking evista (I was on it for 7 years, on and off, after taking tamox for 5 years), she said "they don't know the long term effects of it"; she also had me stop my yearly breast MRIs, due to the possible long term effects of the contrast dye, gadolinium.

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Jul 8, 2018 08:20PM Lea7777 wrote:

The dye in MRIs has me concerned over the long-term and with LCIS, surveillance is for the long-term. Thanks for sharing the comments on Evista too, Awb.

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Jul 9, 2018 05:39AM light1candle wrote:

Interesting thread, Lea7777 - I’m still trying to decide about taking one of the anti-hormonal drugs. Now, about the MRIs and gadolinium... I posted about this on a thread in the “High Risk” section. I was taken aback recently when my BS suggested that I probably shouldn’t do the MRIs anymore - Yikes! I think it was partly because I had an allergic reaction to my first MRI in Dec. but mostly because she is becoming concerned about the safety of the gadolinium, saying it builds up in the body / brain and we don’t know the long term effects. I was kind of counting on the MRIs as my best chance for early detection, so this advice throws me for a loop

Surgery 7/27/2017 Lumpectomy: Right Dx 7/28/2017, LCIS, Right
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Jul 9, 2018 10:10AM Lea7777 wrote:

So you've been cautioned against MRIs too, Light1Candle. Not that PBMX is what I'll do for sure, but if one of the reliable tools for early detection and saving our life is removed--the MRI--this does decrease the unattractiveness of PBMX. Sorry about your reaction in Dec. How long before you were back to normal?

Not sure how appropriate this metaphor is but...

If you have a cantankerous, crabby relative, everybody in the family walks on eggshells around her, alters their schedule to suit her, watches what they say so as not to offend her, and caters to her every whim, all to keep Crabby Relative from having a tantrum. Such wide spread upset and disturbance due to one defective individual. If that one individual were just cut off from the rest of the family, then the entire family would not be miserable and could return to normal.

So...rather than mess up bones, joints, heart, maybe mind and who knows what else, with drugs and now MRI "juice" is thought to mess with the brain, just cut off the problem (or problems) which is narrowly focused, at least presently. Then the rest of the body can continue to function normally without all this harmful interference.

The BS who did my excisional biopsy has definitely not bought into this metaphor. I don't know that I literally buy into yet either. But I am considering it.





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Jul 13, 2018 04:51PM awb wrote:

lightcandle and Lea,

I was quite concerned when my new oncologist recommended no more MRIs (due to the long term risk with the gadolinium in the contrast dye; sounds like an article must've come out on it, as many docs are saying the same thing now); however, she said the 3-D mammos (tomosynthesis) would work very much the same in my situation. My radiologist confirmed the same thing, so that gave me some reassurance since they agreed, (and now I don't have to put up with the difficult IV insertion with the MRI, and don't have to worry about the long term effects of the contrast dye). The 3-D mammos are supposed to be very good, especially for anyone with significant breast density , you could ask your doctor about it. Fortunately, I have no breast density at all, (a nice side effect of the tamox) , so they are very easy to image and to see anything suspicous at all.

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Jul 14, 2018 08:47AM Lea7777 wrote:

Thanks for the 3-D suggestion, AWB. I wonder if the radiation from twice annual tomos, which is more than the old mammos is safe over many decades.

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Jul 17, 2018 03:10PM awb wrote:

Lea, I was never offered the 3-D mammos twice a year, just once, I should ask about it, since I don't get MRIs anymore. (I liked the idea of the MRIs, cuz no radiation, but I do like not having to get the IV and lay still in that noisy machine !) I work in a hospital, and you'd be surprised how quickly and frequently docs order CT scans (lots of radiation !) and MRIs (lots with contrast dye) for so many different issues, I'm sure they don't lay awake at night worrying about the long-term effects. Unfortunately, there are down sides to every type of imaging tests that we presently have at our disposal.

Anne

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Jul 17, 2018 08:46PM Lea7777 wrote:

I don't even know if 3Ds every 6 months are covered either.

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Jul 18, 2018 05:57AM light1candle wrote:

Just curious if anyone else has been offered Automated Whole Breast Ultra Sound (AWBUS) as an alternative form of imaging? If so, what do you think about it?

The breast clinic that I go to has a system called SonoCine and I am thinking about alternating that with my mammogramat the six month interval. It is meant as a screening adjunct to mammography, as opposed to being used as targeted diagnostic of suspicious areas found through other imaging techniques.

Surgery 7/27/2017 Lumpectomy: Right Dx 7/28/2017, LCIS, Right
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Sep 21, 2018 09:32PM - edited Sep 22, 2018 08:50AM by Lea7777

I will ask about AWBUS. Had not heard of it. Thank you Light1candle!

#7 (if I am counting right) Mayo oncologist - Raloxifen (brand is Evista) is appropriate as I also have Osteopenia and have had bad reactions to two of the AIs. She said Raloxifen can be taken long term because I do not smoke and I have low blood pressure, low cholesterol, and am not overweight--meaning stroke risk is low. She said because I have a uterus & am post-menopausal, I should not take Tamoxifen. I asked if I should try Arimidex after not tolerating Exemastane and Letrozole and she said no. Other comments she made were that the AIs are very effective in reducing breast cancer risk. In her experience, Arimidex produced the most side effects for patients and Exemastane produced the fewest. Still, 25% of her patients were unable to tolerate AIs.

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Dec 18, 2018 06:03PM Lisa123456 wrote:

Lea7777, I was on Tamoxifen for a year, then completed my menopause, read a research paper about Arimidex being the single most effective medication for BC prevention in women with LCIS, and asked my doc to switch to Arimidex. Have been on it for a year with no side effects except an occasional hot flash.

I also refused mammos because of the radiation and now only have yearly MRIs with a different type of contrast, the one that doesn't accumulate in the brain.

Dx: 06/13/2016, LCIS, Left. Dx: 08/10/2016, ALH, Right.
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Dec 19, 2018 12:16PM Lea7777 wrote:

Thanks Lisa. What contrast are you requesting for your MRIs?

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Dec 19, 2018 12:46PM marijen wrote:

Lea7777, I’m curious....how do you get them to give you a different dye and what is the name of it? I had two MRIs this year with the gadolinium ( not sure of the spelling here). Thanks!


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Dec 19, 2018 02:56PM light1candle wrote:

I am a member of the "Six Months Club" and I had concerns about gadolinium contrast and posted about it last summer on the High Risk thread. Another member, WC3, seemed very knowledgeable, saying there are two types of Gadolinium contrast agents, linear and macrocyclic, with the macrocyclic agents like Dotarem being considered safer. I recommend reading that thread, especially the posts from WC3. Of course, you should ask your medical docs about their recommendations for the safest agent.

My BS has become worried about the long-term affects of even the safest gadolinium contrast. I also had a mild allergic reaction to the Dotarem that was used in my MRI last year, so this year I opted for a Sonocine automated whole-breast ultrasound as my six month screening (alternated with mammo). Not sure yet what I will do long-term, but I am still considering BMX.

Surgery 7/27/2017 Lumpectomy: Right Dx 7/28/2017, LCIS, Right
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Dec 19, 2018 03:48PM marijen wrote:

Thanks light1candle. I’m pretty sure I got the Dotaram. I was reading that the gadolinium gives the clearest images and that a very tiny amount enters the brain, But I did get a headache for a few weeks after. Not a bad one though. I also think these dyes affect my labs post MRI, if any.


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Dec 20, 2018 07:04AM Lea7777 wrote:

Marijen, I believe you got your answer. It was Lisa123456 who requested a specific dye, not me (Lea7777). But I do believe from the research I have done that macrocyclic Gadolinium rather than the linear Gadolinium is safest, as Light1Candle points out.

On the subject of dye, of the approximately half dozen doctors I have consulted, all offered the opinion that for once a year MRIs that are not done for the brain and if the patient has no kidney or other issues, that all dye is used is safe. One nurse practicioner had a different opinion and cautioned against annual MRIs going forward for years to come due to the dye issues.

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Dec 21, 2018 08:15AM light1candle wrote:

Lea777, thank you for posting about your conversations with various medical professionals about possible LCIS preventative drugs. I find your anecdotes very interesting, and it just seems to show that there is no real agreement among the docs, other than that estrogen reduction drugs give about a 50% risk reduction to those women who can take them. Since all the SERMs and AIs can have unfortunate side effects, especially over the long term, I guess it still depends on each person's other health/disease factors whether the benefits outweigh the harms.

My own experience:

1) The BS, who knew little about my other health issues, just suggested taking either a SERM or an AI, and would have left it up to my primary care doc to prescribe and follow up. She just emphasized that I was high risk and that the drugs could reduce my risk. It didn't seem like she had any preferences for which drug to take.

2) I had a second opinion consultation with a doc specializing in "high risk" patients at a NCI-designated cancer center. I brought all my records and we had a long talk about my co-morbidities, and she initially recommended raloxifene, as long as my rheumatologist approved (due to blood clot risk and other drugs taken for lupus). Since I am overweight, she did mention trying to get my BMI down. She later called me on the phone to say she had re-considered after taking a second look at my health records, and said that she could not recommend any of the drugs at this time. "First, do no harm" is what she said.

3) I later had another consult with my original BS about the possibility of BMX, which she initially seemed to think was an over-reaction. This time we went through my health history, and she agreed that BMX was a legitimate choice in my case, as was continued heightened surveillance. She didn't think I needed to be in any hurry to make a decision.

Continuing with six month surveillance for now, still thinking about BMX.

Barb

Surgery 7/27/2017 Lumpectomy: Right Dx 7/28/2017, LCIS, Right
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Dec 31, 2018 06:07AM Lea7777 wrote:

Light1Candle Barb, Good to know what you were told. Hope your 2019 surveillances go well. And of course beyond.

I like the "First do no harm!"


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