Join Us

We are 217,485 members in 84 forums discussing 160,589 topics.

Help with Abbreviations

Topic: MO discouraging AI 3.5 yrs after BC diagnosis

Forum: Stage I Breast Cancer — Meet other members with a Stage I breast cancer diagnosis to share information and support.

Posted on: Jun 3, 2020 12:23PM

RedemptiveSufferer wrote:

Hi, all! I don't post very often, but have a question. I hope I can ask it succinctly, considering I had a hard time figuring how to even word the 'subject' of this post, lol!

First, a little background. I was diagnosed with BC 3.5 yrs ago, as you can see in my signature. I took Tamoxifen for a little over a year but quit due to SEs.
We moved last summer, forcing me to find a new MO. I met him last Nov. prior to me having a hysterectomy (needed, in part, due to Tamoxifen SEs.) At that time
he suggested I have my ovaries removed so I could start an AI. In the end, I kept my ovaries.

When I saw the MO today for routine follow-up I told him I'd still be open to starting an AI once I enter menopause, which at this point will need to be determined thru blood work.
He responded that he didn't think it would be beneficial at this point to start an AI because there's no clinical data to support starting an AI so long after the original diagnosis.
I was surprised to hear that, but accepted it. All this time I've been hopeful that there was something else I could take to help prevent a recurrence. I hadn't read or heard that
AIs are only effective if you start soon after your diagnosis.

I'm wondering if anyone else has been given similar guidance or read any studies on this?

Thank you!

Author of Joy Is Contagious...Cancer Isn't: 12 Women Share How Faith Shaped Their Breast Cancer Journey Dx 11/4/2016, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/6/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 2/19/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/25/2017 Reconstruction (left): Saline implant
Log in to post a reply

Page 1 of 1 (19 results)

Posts 1 - 19 (19 total)

Log in to post a reply

Jun 3, 2020 03:58PM Salamandra wrote:

This is a great question and I am curious about it too. It also seems to me that absence of evidence is not the same as evidence of absence - but it may impact insurance payment decisions.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy 12/19/2019 Fareston (toremifene)
Log in to post a reply

Jun 3, 2020 04:05PM RedemptiveSufferer wrote:

Thanks for replying, Salamandra. I don't know why I didn't consider the insurance aspect of his decision. How could I forget that so often decisions are based on $$? I'm not sure if I'll get many responses; I'm guessing this is an unusual circumstance. Maybe some others will chime in. :-)

Author of Joy Is Contagious...Cancer Isn't: 12 Women Share How Faith Shaped Their Breast Cancer Journey Dx 11/4/2016, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/6/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 2/19/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/25/2017 Reconstruction (left): Saline implant
Log in to post a reply

Jun 3, 2020 04:20PM bcincolorado wrote:

If you are not comfortable with this MO you might want to see who else might be covered in your network and get a second opinion at this point.

To my knowledge most people are on AI and/ /or hormonal therapy for about 10 years now and it cuts risk if you are at that stage which is what you have which as my MO called it "nice cancer" (HA!!!) because at least I could be treated that way after all the surgery and everything was done.

Best of luck to you.

Dx 8/2009, IDC, Left, 5cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 1/7/2010 Lumpectomy: Left; Lymph node removal: Left Hormonal Therapy 1/15/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/30/2016 Femara (letrozole)
Log in to post a reply

Jun 3, 2020 04:23PM - edited Jun 3, 2020 04:50PM by ShetlandPony

The standard is five years of endocrine therapy, ten in some circumstances. You started tamoxifen in February 2017, so ideally you would have been on it or another anti estrogen therapy until February 2022 at least. If you are still in that time period after menopause, I don't see why not restart. But how far are you from menopause? Have you considered using ovarian suppression now in order to take the AI and complete your therapy? Waiting is taking a risk. As for whether an aromatase inhibitor would work later, well it works even for women who recur metastatic many years after their early stage diagnosis.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
Log in to post a reply

Jun 3, 2020 07:58PM RedemptiveSufferer wrote:

bcincolorado - Thanks for your input. That idea certainly crossed my mind this morning. Last year when we moved here he came highly recommended by someone, yet I sense that he doesn't take early stage breast cancer very seriously. I may start looking around for someone else, at least for a second opinion. BTW we lived in Colorado Springs for about 13 yrs. All my children were born there so it holds a special place in my heart. :-)

ShetlandPony - Your response makes total sense to me. He said something to the effect that research only supports "consistent" hormone therapy started after diagnosis. So I guess his thinking is that since I had such a long break after stopping Tamoxifen, that starting an AI in what could be a year from now (whenever I start menopause) would be pointless. Oddly, he recommended I get my ovaries out so I could start at AI when I told him I was having a hysterectomy six months ago. Today he didn't even suggest ovary suppression. Did that much change in 6 months? I'm beginning to think I need a 2nd opinion, like bcinco mentioned.

Author of Joy Is Contagious...Cancer Isn't: 12 Women Share How Faith Shaped Their Breast Cancer Journey Dx 11/4/2016, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/6/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 2/19/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/25/2017 Reconstruction (left): Saline implant
Log in to post a reply

Jun 4, 2020 09:31PM ShetlandPony wrote:

Do you think he is miffed because you did not follow his advice last November?

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
Log in to post a reply

Jun 5, 2020 08:42PM RedemptiveSufferer wrote:

Shetland Pony, that's an interesting question. I'd like to think not, considering I explained to him in Nov that the reason I wasn't sure about having my ovaries removed was because of the fairly severe depression I experienced while on Tamoxifen. I told him you can quit a med (which I did) but you can't pop your ovaries back in, lol. He didn't think Tamoxifen's affect on estrogen caused depression and thought I'd be OK to have my ovaries removed. So who knows. Maybe his thought Wednesday was, "She quit tamoxifen, she didn't follow my advice to have her ovaries removed, so she probably won't stick with an AI either." I wish I had a better rapport with him to know.

Author of Joy Is Contagious...Cancer Isn't: 12 Women Share How Faith Shaped Their Breast Cancer Journey Dx 11/4/2016, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/6/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 2/19/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/25/2017 Reconstruction (left): Saline implant
Log in to post a reply

Jun 5, 2020 08:48PM Askmissa wrote:

I think you should go see another Oncologist. All breast cancer survivors should be on either Tamoxifen or an AI for at least 5 years....from everything i've read.

Dx 6/17/2019, IDC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- (FISH) Surgery 8/19/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Jun 5, 2020 08:54PM RedemptiveSufferer wrote:

Thanks, Askmissa! I think you're right. I wish I knew more people in my area who might provide a referral. Guess I'll start researching online. :-) I appreciate your input!

Author of Joy Is Contagious...Cancer Isn't: 12 Women Share How Faith Shaped Their Breast Cancer Journey Dx 11/4/2016, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/6/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 2/19/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/25/2017 Reconstruction (left): Saline implant
Log in to post a reply

Jun 5, 2020 09:27PM Danee78 wrote:

Hi RedemptiveSufferer. I got a second opinion from Memorial Sloan Kettering cancer center, and the MO told me that all of the hormonal drugs can potentially cause or worsen depression. She took this issue seriously.

Like someone else said above, the hormonal drugs are given to women who are already metastatic so I don’t know why your doctor would not give them to you. One thing to keep in mind is that if ovarian suppression + an aromatase inhibitor don’t agree with you, you can stop taking them.


Dx 1/29/2020, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 2/25/2020 Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/9/2020 Aromasin (exemestane)
Log in to post a reply

Jun 5, 2020 10:38PM farmerlucy wrote:

I was in a bad place after dx, and felt like I could not tolerate tamoxifen after using it for two weeks. A year later I was much better and decided to give tamoxifen a try and I tolerated it. My onc said better later than never. Your docs arguments does not hold water in my opinion. If your tumor was not picked up until it was bigger, say several years down the line you’d be on the AI. I’d write your onco and make your case again. AI meds are cheap and generic. Oh, unless you want to use Femara for infertility - then it is like $60 a pill. Mind blowing.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
Log in to post a reply

Jun 6, 2020 12:00AM Cowgirl13 wrote:

Redemptive, do get a second opinion and if you like the doc, me could be your new onc.

Be the kind of woman that when your feet hit the floor each morning the Devil says: 'Oh crap! She's up! Dx 5/28/2009, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 6/17/2009 Chemotherapy 8/3/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)
Log in to post a reply

Jun 6, 2020 12:22AM RedemptiveSufferer wrote:

Danee78, sounds like you had an informed and caring MO! Ovarian suppression is an option though I've heard some troubling things about the Lupron shots (I know, read enough and you can find something worrisome about all of these drugs.) My previous oncologist was convinced I was close to menopause, so I guess I kept thinking I would enter menopause naturally any day. Apparently a part of my body thinks it's younger that it is, haha.

Farmerlucy, I had no idea about the price discrepancy - that's crazy! Your point about if my cancer had gone undetected longer I'd still be placed on an AI makes perfect sense. For the record (should someone stumble upon this thread wondering about Tamoxifen) the worst of my depression lifted after about 4 mos on Tamoxifen. So my body did adjust to that. I had other SEs that lead me to eventually throw in the towel.I'm glad you were able to get back on it and did OK with it!

Cowgirl13, I take your advice to heart. I think I need to see someone else. Thank you!

Author of Joy Is Contagious...Cancer Isn't: 12 Women Share How Faith Shaped Their Breast Cancer Journey Dx 11/4/2016, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/6/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 2/19/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/25/2017 Reconstruction (left): Saline implant
Log in to post a reply

Jun 6, 2020 02:22AM ShetlandPony wrote:

If that oncologist denied that tamoxifen can cause depression in some women, he is at best uninformed. And given your concern, that he would recommend ooph rather than a trial of Lupron first to see how you handled early menopause, again shows something lacking.

Here are the two top cancer centers in Michigan, good places to seek a second opinion. You might consider looking for a female oncologist.

University of Michigan Rogel Cancer Center
Ann Arbor, Michigan
Comprehensive Cancer Center

The Barbara Ann Karmanos Cancer Institute
Wayne State University School of Medicine
Detroit, Michigan
Comprehensive Cancer Center

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
Log in to post a reply

Jun 6, 2020 10:56AM RedemptiveSufferer wrote:

Thank you, Shetland Pony! (that's a beautiful profile pic, btw). I'm not trying to defend this MO at all, but he didn't deny that Tamoxifen could cause depression. In essence, he believed it was the chemical compound (if I recall) and not necessarily its impact on estrogen, that lead to depression. So he didn't think having my ovaries removed would cause depression. That said, I've read too much about women who sufferer from depression following ooph to think it doesn't happen. Any time you mess with hormones depression can result. Depression runs in my family and after what I went through with Tamoxifen I wasn't willing to risk it. Surely there's an MO who takes this concern into account, like Danee78 shared.I appreciate you sharing those links; I'll definitely check them out.

I noticed from your signature that your early stage BC advanced, and I'm so sorry. It causes your guidance to carry even more weight and makes me even more grateful that you're willing to offer it. Do you mind me asking if you were still on Tamoxifen when the BC recurred or had you quit?

Author of Joy Is Contagious...Cancer Isn't: 12 Women Share How Faith Shaped Their Breast Cancer Journey Dx 11/4/2016, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/6/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 2/19/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/25/2017 Reconstruction (left): Saline implant
Log in to post a reply

Jun 6, 2020 12:33PM Sunshine99 wrote:

Redemptive, my initial treatment plan was surgery, chemo, Tamoxifen and then Arimidex. To be honest, I don't remember how long I took them. I had my ovaries but no uterus, so we relied on blood work to tell when I was menopausal. I don't recall having any severe side effects from either drug, for which I am grateful.

I stopped the Arimidex when my MO said I could. Fast forward to February of this year when the discovery of a lump in my armpit led to tests, scans and biopsies. New diagnosis of Stage IV metastatic breast cancer. I'm back on the Arimidex because the cancer is ER positive.

Your concerns are valid and deserve consideration from your oncologist. Do you have a PCP who might be able to answer your questions? I hope you find an oncologist who will really listen to you and answer your questions to your satisfaction.

All the best to you.

Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, ILC/IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External: Bone Radiation Therapy 5/12/2020 External: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
Log in to post a reply

Jun 6, 2020 04:43PM RedemptiveSufferer wrote:

Sunshine99, I so appreciate your thoughtful response. I'm sorry for the new diagnosis and hope that the Arimidex works exceedingly well for a long time! What a blessing that you didn't have SEs from it before - I trust that's the case now as well.

I've seen my PCP twice - he was recommended by the MO, lol! Both visits were routine to establish myself as a new patient of his practice. He's OK. Extremely quick yet thorough. He seems perfectly fine if you go in with bronchitis but perhaps not the best choice if you need to actually discuss a concern with him. I'm certainly open to finding a new PCP but don't have the time to do a lot of research. I may focus my attention on finding a new oncologist.

At least I love my new plastic surgeon! haha. Shortly after we moved to MI I discovered that my breast implant had been recalled. I made a consultation with this new PS and I think he's amazing. There's hope I'll find some other competent and caring docs. :-)

I wish you ALL the very best with your treatment and hope you're feeling good physically and mentally.

Author of Joy Is Contagious...Cancer Isn't: 12 Women Share How Faith Shaped Their Breast Cancer Journey Dx 11/4/2016, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/6/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 2/19/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/25/2017 Reconstruction (left): Saline implant
Log in to post a reply

Jun 6, 2020 05:12PM BCat40 wrote:

I have a history of depression and am on anti-depressants. When my first MO suggested OS + AI she basically took it as a given it could or would worsen my depression and said I should "work with my psychiatrist to increase my antidepressants" to counteract that effect. It didn't sound very appealing to me. I'm still on the fence about what I am doing and am getting another opinion. Curious if anyone already on antidepressants had their depression worsen on the antihormonal meds and needed to increase the dose of the antidepressants?

Dx at 40 Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/1/2020 Whole-breast: Breast
Log in to post a reply

Jun 6, 2020 05:36PM RedemptiveSufferer wrote:

BCat40, Depression is a serious issue and I'm glad to hear that your MO is well aware of how OS + AI can impact it. I hope some others will see your question and chime in.

I wasn't on an antidepressant when I started taking Tamoxifen so I can't say. I managed to avoid taking one after I started Tamoxifen (not that I was against it, just had concerns of compounding SEs with other potential SEs from another drug). To combat the depression I started working out like mad. Sometimes I'd hop on my bike and ride it at 6:30am. Or I'd hit the gym once kids got home from school. Or at 9pm. Whenever I could workout I did nearly every single day. I was driven unlike ever before because it was the only time that I felt normal. I lived for those little opportunities to feel somewhat good. I ended up dropping a lot of weight while on Tamoxifen...now if only I could get that motivated again! :-)

I understand being on the fence and hope you get some helpful, solid direction soon!

Author of Joy Is Contagious...Cancer Isn't: 12 Women Share How Faith Shaped Their Breast Cancer Journey Dx 11/4/2016, ILC/IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/6/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 2/19/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/25/2017 Reconstruction (left): Saline implant

Page 1 of 1 (19 results)