Join Us

We are 218,192 members in 84 forums discussing 160,935 topics.

Help with Abbreviations

Topic: Letrozole - is it worth the side effects?

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

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Jun 1, 2020 12:44PM

heidirgorecki wrote:

I have finished current Breast Cancer treatment with TCHP for 4 months last year, Herceptin for 12 months and bilateral mastectomy with reconstruction. I was HER2+ and PR+ at 18% but ER Negative. I'm going to be having a full hysterectomy in August but my oncologist wants me to consider an AI - Letrozole for the possible benefits of reducing recurrence. I obviously won't need Lupron because of the hysterectomy but he warned me the side effects are often not the most pleasant often so he's leaving it up to me.

Could any of you give me your experiences with it? Whether it was bad and what the worst side effects were? Or especially long term issues like bone loss.

Thank you!

Dx 3/22/2019, IDC, Left, 3cm, Stage IIIA, Grade 3, ER-/PR+, HER2+ (IHC) Targeted Therapy 4/5/2019 Herceptin (trastuzumab) Targeted Therapy 4/5/2019 Perjeta (pertuzumab) Chemotherapy 4/5/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/18/2019 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Page 1 of 1 (13 results)

Posts 1 - 13 (13 total)

Log in to post a reply

Jun 1, 2020 07:01PM BCat40 wrote:

I don't understand why the MO would recommend an AI if you were ER- and only 18% PR+. The AI is to "mop up" circulating estrogen. Did he explain that? I think you should get a second opinion.

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 1, 2020 07:15PM heidirgorecki wrote:

Yeah he said it was because of the potential effect of estrogen even tho I wasn't positive. It apparently has some proven effectiveness with PR, although I'm not sure how much. I'm still working on that research before I make a decision

Dx 3/22/2019, IDC, Left, 3cm, Stage IIIA, Grade 3, ER-/PR+, HER2+ (IHC) Targeted Therapy 4/5/2019 Herceptin (trastuzumab) Targeted Therapy 4/5/2019 Perjeta (pertuzumab) Chemotherapy 4/5/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/18/2019 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Jun 1, 2020 08:07PM akmom wrote:

Heidi, there is a thread on this forum called Doing Well on Aromatase Inhibitors. Many people (including me) have minimal or no side effects on Letrozole. This thread might be be reassuring, or at least answer questions you may have about side effects

https://community.breastcancer.org/forum/78/topics/854403?page=1

Surgery 2/12/2012 Lumpectomy: Right Dx 2/24/2012, DCIS, Right, <1cm, Stage 0, Grade 2 Radiation Therapy 4/10/2012 Whole-breast Dx 8/14/2018, IDC, Right, <1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 8/14/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Surgery 8/14/2018 Mastectomy: Left, Right Hormonal Therapy 9/10/2018 Femara (letrozole)
Log in to post a reply

Jun 1, 2020 08:12PM heidirgorecki wrote:

thank you so much, I will check it out

Dx 3/22/2019, IDC, Left, 3cm, Stage IIIA, Grade 3, ER-/PR+, HER2+ (IHC) Targeted Therapy 4/5/2019 Herceptin (trastuzumab) Targeted Therapy 4/5/2019 Perjeta (pertuzumab) Chemotherapy 4/5/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/18/2019 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Jun 1, 2020 11:30PM LimnoGal wrote:

Heidi- my ER was low (35%) and my PR was negative. My MO suggested that I try letrozole. I took it for 3 years with minimal, mostly tolerable side effects. Between 3 and 3.5 years, I started having more activity limiting side effects. After an MO approved 2 month vacation From letrozole (where my side effects improved significantly), I tried letrozole again, then exemestane. Both caused the side effects to return. I am currently on a trial run of tamoxifen, where the only real side effect is some whopping hot flashes (not a problem in winter, but summer in the Midwest??).

I understand, and agree with, your questions about the benefit from taking an AI for low/no ER Individuals. There really isn’t much out there in terms of research to guide a decision. The best reason I have heard is that it may prevent a new tumor from developing.

You can always give it a try, and stop if the side effects are too much. I honestly did ok for the first three years. This year has been more of a challenge. I’m not sure if there will be a 5 th year...

Moving on.... Dx 11/2016, DCIS/IDC: Papillary, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER+/PR-, HER2- Surgery 2/11/2016 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Balloon-catheter: Breast
Log in to post a reply

Jun 2, 2020 11:10AM - edited Jun 2, 2020 11:11AM by heidirgorecki

thanks LimnoGal that is super helpful

Dx 3/22/2019, IDC, Left, 3cm, Stage IIIA, Grade 3, ER-/PR+, HER2+ (IHC) Targeted Therapy 4/5/2019 Herceptin (trastuzumab) Targeted Therapy 4/5/2019 Perjeta (pertuzumab) Chemotherapy 4/5/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/18/2019 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Jul 5, 2020 09:46PM - edited Jul 5, 2020 09:48PM by MomE

I took anastrozel for 1 year with many side effects. Doctor switched me to Letrozole but to be truly honest the side effects are just as bad. I suffer from joint pain in my hands and feet. I have had trigger fingers on both hands and onset of carpal tunnel syndrome on both hands.Cramping in my hands, feet and legs. I have hair loss, dry skin, raised cholesterol readings and my blood pressure has risen( I always had low normal BP). I will get a bone density test soon.

Thankfully I am at the end of my regiment.

Log in to post a reply

Aug 31, 2020 10:24AM - edited Aug 31, 2020 10:26AM by sandylo

i have just taken my last tablet yesterday after 10 years i call it poison! I was very active before the cancer diagnosis. I now have to use a walking stick as both hips need replacing and both knees will be next. I also have a trigger finger not slept for 10 years just the odd hour pain in all my joints struggle to get out of the chair after sitting for a while itching all over its been a nightmare. And my hair and nails are terrible and numerous teeth problems.



Log in to post a reply

Aug 31, 2020 10:36AM heidirgorecki wrote:

Wow, sounds like it's almost as bad as tamoxifen... i have decided not to take it. WIthout my cancer being estrogen related, it feels like taking an antibiotic for the flu, and with the side effects being pretty major, I don't see the point. All of your feedback has been super helpful thank you!!

Dx 3/22/2019, IDC, Left, 3cm, Stage IIIA, Grade 3, ER-/PR+, HER2+ (IHC) Targeted Therapy 4/5/2019 Herceptin (trastuzumab) Targeted Therapy 4/5/2019 Perjeta (pertuzumab) Chemotherapy 4/5/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/18/2019 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Aug 31, 2020 01:36PM Mavericksmom wrote:

heidirgorecki , I am confused. You had an estrogen neg. tumor, so why would your MO recommend an AI?

I took Letrozole for 6 months. I stopped taking it due to it raising my cholesterol significantly and I was starting to get joint pain. I NEVER wanted to take it and firmly believe it is over prescribed. I do not feel in post menopausal women, it is a good idea to limit estrogen except for some women where the benefit clearly outweighs the harm. Of course each person is different and we need to listen to what our doctor recommends, do our homework, then apply what we learned to our own bodies. It is also up to each of us to decide how much risk one way or the other, we are willing to take.

Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
Log in to post a reply

Aug 31, 2020 01:42PM - edited Aug 31, 2020 01:42PM by heidirgorecki

@mavericksmom - That was my concern as well so when I asked him about it, what it came down to is there just really isn't any treatment for PR breast cancer, so they do this just in case, since so often it's ER positive in most women and it could potentially be in the future. Apparently I'm in the 1.5% rate occurrence with Hormone positive but only HER2/PR+ breast cancers so know one knows what to do. Figures.

So that's why after doing every bit of research I could, I opted out. I just don't see the point at putting my bones at risk and going thru the side effects when nothing definitive is saying that's a problem. I am having a hysterectomy but more for the sake of worrying about cancer showing up in my uterus or ovaries at the rate I'm going with 2 cancers now.

Dx 3/22/2019, IDC, Left, 3cm, Stage IIIA, Grade 3, ER-/PR+, HER2+ (IHC) Targeted Therapy 4/5/2019 Herceptin (trastuzumab) Targeted Therapy 4/5/2019 Perjeta (pertuzumab) Chemotherapy 4/5/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/18/2019 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
Log in to post a reply

Aug 31, 2020 03:49PM - edited Aug 31, 2020 03:50PM by shirleyg1

I am also considering stopping because of all the side effects. What is the percentage of

Survival without taking letrozole or tamoxifen


Log in to post a reply

Aug 31, 2020 04:11PM heidirgorecki wrote:

@shirleyg1 - It was awhile ago I did all my research so I don't remember exactly, but it honestly had a lot to do with the type of cancer you had and the percentages of hormones from what I saw. For mine, being only HER2/PR+ it didn't make any statistical benefit, but actually in some cases seemed to make things worse. In some cases, it converted other hormonal factors into mimicking progesterone if you had certain genetic makeup which is obviously bad in my case. I would think that if you had them constantly monitor your levels it may give you a reason enough to consider stopping it, at least for an evaluation period.

Dx 3/22/2019, IDC, Left, 3cm, Stage IIIA, Grade 3, ER-/PR+, HER2+ (IHC) Targeted Therapy 4/5/2019 Herceptin (trastuzumab) Targeted Therapy 4/5/2019 Perjeta (pertuzumab) Chemotherapy 4/5/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/18/2019 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant

Page 1 of 1 (13 results)