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Topic: CANTO Study: Hormone Therapy Worsens QOL More Than Chemo

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 7, 2020 06:12PM

BCat40 wrote:

https://www.annalsofoncology.org/article/S0923-7534(20)32594-1/fulltext

I haven't decided on my systemic therapy plan yet but was wondering if anyone who has done both chemo and ET can weigh in on the QOL impacts--whether you felt one was worse than the other. The CANTO study just came out from France on this topic (link above).

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
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Jun 7, 2020 07:50PM - edited Jun 7, 2020 10:02PM by ElaineTherese

Hi!

I did chemo (Adriamycin + Cytoxan, then Taxol + Herceptin + Perjeta), and I've now done over five years of ovulation suppression/hormonal therapy (Zoladex + Aromasin -- I'm on the 7-10 year plan). I found AC chemo to be the most debilitating because it gave me chemo brain, and I had to write everything down in order to function. Taxol + Herceptin + Perjeta gave me fatigue and diarrhea, which I controlled with Imodium. Zoladex + Aromasin gave me osteoporosis (treated with Prolia), mood swings (treated with Celexa), and hot flashes.

I'd say that chemo was worse than hormonal therapy for quality of life, but at least with chemo, you know it's going to be over in a matter of months. So, you go through chemo with a fixed end-date in mind. It might suck, but it will suck and be over.

With respect to hormonal therapy, the thought that you'll be on it for years is a real drag. Even though I'm pretty far along (MO and I will decide whether to stop at year seven), it feels like forever. If you're struggling with hormonal therapy, I can imagine thinking, "No way am I going to feel this way for the next five/seven/ten years!" I'm lucky that OS + AI hasn't been too bad for me; for others, that certainly isn't the case.


DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
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Jun 7, 2020 09:03PM - edited Jun 8, 2020 02:58PM by Cowgirl13

This Post was deleted by Cowgirl13.
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 8/2/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)
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Jun 7, 2020 09:15PM FarAwayToo wrote:

Chemo was way harder for me. AC, in particular, was very hard mentally, although I later thought it could have been due to mood swings that were induced by all the steroids they give with chemo.

I've been on letrozole for a little over 2 years. I can confidently say that SE has gotten better: I have fewer hot flashes, less joint pain, although muscle pain still bugs me. On a plus side, due to being in permanent menopause I no longer have period-related migraines that I used to have. But, of course, antihormonals are no picnic. My sex life is non-existent. Some hot flashes have a very unpleasant aura when I feel lightheaded and as if I'm about to pass out. I developed lots of premature wrinkles (I was DXed at 40 and now am 43).

But, as my onc NP once put it to me, "our bodies learn to live without estrogen". Mine adapted.

Dx 8/31/2017, IDC, Right, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Dx 9/15/2017, DCIS, Left, 3cm, Stage 0, Grade 1, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 9/29/2017 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 2/23/2018 Zoladex (goserelin) Surgery 2/28/2018 Mastectomy: Left, Right Surgery 2/28/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/5/2018 Femara (letrozole) Surgery 8/21/2018 Prophylactic ovary removal; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Jun 7, 2020 09:34PM ruthbru wrote:

For me, chemo was tough but short lived. Although it took me longer than I would have liked to bounce back, in the end I had no lingering problems stemming from it. I was on Arimdex for 5 years with very minimal side effects (which exercise and a fan took care of). I would advise trying anti-hormonals with an open mind and not have a preconceived idea that it will be bad. For me, chemo gave me a 20% risk reduction and anti-hormonals gave me a 40% reduction. I was glad for both.

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jun 8, 2020 12:18AM buttonsmachine wrote:

Having done a few different chemo and hormone therapies, my advice would be that different drugs are very different from eachother. Not all chemos are the same, and not all hormone therapies are the same.

My personal experience was this: On chemo I had trouble with TC (Taxotere was my worst chemo experience), and an okay time on AC. I could live a fairly normal life on Xeloda. On hormone medicine I felt pretty good on Tamoxifen, I felt terrible on Aromasin, and I feel okay on Faslodex.

It's hard, and everyone has a different experience. Best wishes for your decision.

Diagnosed at 32. Local recurrences in skin one year later due to needle seeding at initial biopsy. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2-
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Jun 8, 2020 12:56PM BCat40 wrote:

I just got a 3rd opinion from an MO who is a very respected internationally known researcher (covid actually had a positive effect with increased telemed options!!!) and he's telling me no chemo. So I'm going to trust his advice. Hoping this thread will still be helpful for other ladies.

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
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Jun 8, 2020 02:05PM ruthbru wrote:

That is great news!!

"Invisible threads are the strongest ties." Friedrich Nietzsche Dx 2/2007, Stage IIA, Grade 3, 0/11 nodes, ER+/PR-, HER2-
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Jun 8, 2020 02:57PM Cowgirl13 wrote:

Great news and congratulations on getting a third opinion!

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 8/2/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)
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Jun 9, 2020 02:13PM Darlene63 wrote:

Thanks for the information; I was diagnosed in Feb 2020; had the lumpectomy and they took out 9 lymph nodes they were all negative and did 20 radiation treatments and was started on endocrine therapy 4/2/2020 via a phone appointment. I have lymphedema which they said no one gets any more. The anastrozole has cause horrible night sweats and day sweats; I sweat all day and all night. I don't know if anything can be done about the night sweats; I don't know if it will even work to prevent a recurrence. Reading these blogs makes me think it is just a manner of time when it comes back.

Dx 2/21/2020, ILC, Right, 4cm, Grade 2, 0/9 nodes, ER+/PR+, HER2- (IHC) Surgery 2/28/2020 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Hormonal Therapy 4/3/2020 Arimidex (anastrozole) Radiation Therapy 4/24/2020 3DCRT: Breast, Lymph nodes, Chest wall
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Jun 9, 2020 02:23PM Darlene63 wrote:

I did this genetic testing that scores your entire cancer and gives you the odds of if it will come back and my odds were that adding chemo would not improve my risk of the cancer coming back. So I chose not to have he chemo; the radiation was hard enough. The test was in California called Genomic Health; I made sure my oncologist ordered it. But of course they waited almost a month after I had my surgery. Google them up and see what you think. My insurance covered it which was a suprise.

Dx 2/21/2020, ILC, Right, 4cm, Grade 2, 0/9 nodes, ER+/PR+, HER2- (IHC) Surgery 2/28/2020 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Hormonal Therapy 4/3/2020 Arimidex (anastrozole) Radiation Therapy 4/24/2020 3DCRT: Breast, Lymph nodes, Chest wall
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Jun 9, 2020 03:33PM Beesie wrote:

Darlene, what you had done was the Oncotype test. It is accepted standard of care these days for guiding the chemo decision for those with ER+, HER2- cancers. Insurance usually covers the cost and only doesn't in situations where the pathology either clearly suggests that chemo is not necessary (a small non-aggressive tumor that is node negative) or clearly indicates the need for chemo (for example, a very large high grade tumor with extensive nodal involvement).

You need to be careful in drawing conclusions from reading this site. Remember that the people who hang out here and return here are those who need the support. So you will find here all the previous members who've had a recurrence, but there are many many more who were one time members but who no longer post here because they are off living their lives, with breast cancer behind them.

What was your Oncotype score? That will give an indication of your risk of recurrence and will be a lot more accurate for you than what you read about what's happened to other people.

"I have lymphedema which they said no one gets any more" Goodness, who told you that? Are you seeing a Lymphedema specialist?

As for the side effects from anastrozole, you might want to read the following thread for suggestions, or start your own thread asking for advice in dealing with night sweats from AIs:

Topic: Doing Well on Aromatase Inhibitors (AIs) https://community.breastcancer.org/forum/78/topics...




“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jun 10, 2020 04:48PM windingshores wrote:

I was on letrozole for 5 years and stopped several months ago. I really caution anyone not to assume the worst with these meds. For many of us, it just isn't that bad. I actually miss the security blanket and may go back on for two more years.

Dx 2/2015, DCIS/ILC/IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery Lymph node removal; Mastectomy: Right Surgery Mastectomy: Left; Prophylactic mastectomy: Left Hormonal Therapy
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Jul 23, 2020 09:48AM Darlene63 wrote:

I did the same test and yes I think it was a good test and I did not need chemo either. And you are right I thought the radiation treatment was horrible; degrading and humalitating. And I only did 20 treatments which is what my insurance covered. I had read that 5-6 weeks was the recommended radiation treatment and I think I did the 4 weeks because my insurance would not cover any more. I am not sure if I could have done another week it was horrible and my breast turned red brown and was searing with pain; it got darker and darker but now is much better but I would never do it again. I have been taking the antiestrogen since 4/3/2020 and the hot flashes or just pain sweat is not any fun at all. I am either cold or hot all the time.

Dx 2/21/2020, ILC, Right, 4cm, Grade 2, 0/9 nodes, ER+/PR+, HER2- (IHC) Surgery 2/28/2020 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Hormonal Therapy 4/3/2020 Arimidex (anastrozole) Radiation Therapy 4/24/2020 3DCRT: Breast, Lymph nodes, Chest wall
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Jul 23, 2020 09:54AM Darlene63 wrote:

Thank you so much for your advice; I am very busy and have trouble finding time to do all the thinks I need to do. I can't remember what my score was on the oncogene test but it was good and I did not need the chemo. My one question is about a follow up mammogram. So my initial mammogram was in Feb 2020 and the ultra sound showed my stupid cancer the mammogram did not. In August it will be six months since my lumpectomy and in November it will be 6 months since the last radiation treatment; so should I do a mammogram in August or wait till November; should I do a breast MRI of the breast that had the cancer in it. I was told to do a mammogram six months after my radiation but I am stumped about when I should do it. I plan to call the oncologist office but I really don't like talking to them.

Dx 2/21/2020, ILC, Right, 4cm, Grade 2, 0/9 nodes, ER+/PR+, HER2- (IHC) Surgery 2/28/2020 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Hormonal Therapy 4/3/2020 Arimidex (anastrozole) Radiation Therapy 4/24/2020 3DCRT: Breast, Lymph nodes, Chest wall
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Jul 23, 2020 12:32PM BCat40 wrote:

Darlene I am guessing you did a hypofractionated course of radiation which is about 20 treatments and is now the standard of care in many cases. You get a total dose and the doctor decides how many treatments to divide it into. Your insurance wouldn’t deny if you needed more treatments to get to a total dose as then you would not be getting a complete treatment.

https://www.yalemedicine.org/conditions/hypofractionated-radiation-breast-cancer/

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
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Aug 6, 2020 02:08PM Floral wrote:

Just to chime in here, I did not have chemo but have been on anastrozole for six months now. I have had some minor side effects but nothing that would affect my quality of life. I think it made my existing trigger finger worse and I am seriously stiff in the morning, all over but especially my fingers. The stiffness goes away the minute I get out of bed and move. I'm also ALWAYS hot. I bought a bag of 12 cheap fabric fans from Amazon and put them everywhere I usually am, plus my purse and car. So far, that's it. Nothing that I would consider serious, just mildly annoying. Everybody seems to be different with these side effects. My point is simply don't assume you will get side effects because many people do. There are also many people who don't. Anything with science behind it is worth a try at least. That's the way I look at it anyway.

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Aug 7, 2020 02:07PM - edited Aug 7, 2020 02:09PM by muska

I haven't read the study. I wonder how one can compare a short-term treatment like chemo to a long-term treatment like AIs. Not exactly apples to apples.

I have done both and radiation too. Radiation was the most challenging for me, especially mentally. Chemo was tough but doable. I was able to continue working through both chemo and radiation taking sick days for infusions. Was my QOL impacted by radiation and chemo? Certainly. I had to take precautions not to catch infection, was weaker, had to get red cells transfusion at some point, lost hair, couldn't travel, etc. None of the things I just mentioned were considered serious side effects and in the opinion of my MO I breezed through it.

I have been on an AI for 6.5 years. No side effects apart from dryer skin and minor stiffness in the morning that could be the result of normal aging process too. I don't even think about this little pill any longer. It certainly has not impacted my QOL in a significant way. I don't consider the need to use more moisturiser and exercise more regularly as a QOL impact, especially when we are potentially talking about life itself

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Dx 6/13/2013, LCIS, Both breasts Surgery 6/13/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/25/2013 AC + T (Taxol) Surgery 2/20/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/12/2014 Arimidex (anastrozole) Radiation Therapy 3/23/2014 Breast, Lymph nodes, Bone
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Aug 7, 2020 02:23PM kathabus wrote:

I start letrrozole soon and I have to say...I love all the positivity. I know there will be SEs....but I want to at least START with a positive attitude. I’m going to just take one side effect at a time.

My insurance did not cover my oncotype test because of my positive lymph node. Even though I was eligible for the test per Genomic Health’s guidelines....and even though my MO approved it. Very disappointing. Decided to do oopherectomy with AI instead of chemo per my MOs recommendation.

43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/14/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/20/2020 Prophylactic ovary removal Hormonal Therapy 8/20/2020 Femara (letrozole)
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Aug 7, 2020 08:02PM Hopeful82014 wrote:

kathabus, I'm surprised that your insurer refused to cover your Oncotype. Oncotype is validated for 1-3 positive nodes (although not as robustly as node negative) and that shouldn't be treated as experimental. My insurer is super conservative and even they covered it. I don't recall that I even had to argue with them about it as I did with some other testing. I hope you didn't end up paying out of pocket for it!

Dx IDC
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Aug 7, 2020 10:36PM - edited Aug 7, 2020 11:04PM by Cowgirl13

This Post was deleted by Cowgirl13.
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 8/2/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)
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Aug 7, 2020 10:44PM BCat40 wrote:

It’s a legitimate study, I did not make it up.

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
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Aug 7, 2020 11:08PM Cowgirl13 wrote:

BCat40, I just came back to delete my post. Sorry for the thoughtless post I think I'm just bummed out with Covid and everything. Still no excuse. I actually looked up the CANTO study and its very large and the length of the study is for 10 years. It didn't occur to me that the point of the study is to learn how to mitigate the effects of these toxicities in/from treatment. They are following 12,000 women.

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 8/2/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)
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Sep 1, 2020 08:18PM AmyCinny wrote:

I've done chemo twice and hormonals twice. Every one is different - studies are great for guidance, but each of us is still an individual. So I share my experience, but it doesn't mean it will be yours. Also, through my cancer experience, both my oncologist and I have discovered that I am beyond hypersensitive to drugs. I had a side effect from Herceptin she'd never seen and a side effect from Arimidex she'd never seen - and she's treated thousands of patients for more than 20 years.

Both times chemo was tough,not fun. But I saw my oncologist regularly, I had the chemo nurses for help, and everyone else expects you to experience difficulties during chemo. Being on a hormonal is totally different and for me, made chemo look like a walk in the park. While I was struggling to find my new normal after chemo, my problems only grew. However, to most people, if you're done with chemo, you should be fine. That is also what makes hormonals more challenging, I think.

The first time I took a hormonal, I was on Tamoxifen because I was premenopausal. Tamoxifen was hell, horrible side effects - I only made it 2 years.

Seventeen years later, I was diagnosed again, but this even more strongly ER/PR+ plus Her2Neu positive. So after more chemo, I started Arimidex since I'm now postmenopausal. After 3 weeks, I developed a bad cough. I stopped the drug, the cough went away, and I waited 2 months and re-started Arimidex. No cough, but one year later, I've now stopped Arimidex because I am crippled with relentless pain. I have other side effects as well, but it's the pain that's unbearable. I'm taking a drug holiday and then I'll try Aromasin.

So for me, hormonals destroy my quality of life and they're long-term, so far worse than the side effects from chemo which, fortunately, dissipated in the weeks and months after completing treatment. But again - this is MY story and I can't emphasize enough how my story is not your story. I have a friend who's been on both Tamoxifen and Arimidex with ZERO side effects.

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Sep 4, 2020 05:29PM VioletKali wrote:

Hormonal therapy greatly disrupts my QOL. So I refuse to do it. Tried a few times and I just am not happy.

My tumor was 1.7cm, 10% of it was noted to be DCIS. No family history of cancer at all. Discontinued Chemo d/t uncontrollable side effects which caused hospitalizations, blood transfusions, and poor quality of life. I am doing well! Dx 6/19/2014, DCIS, Stage 0 Dx 6/19/2014, IDC, 1cm, Stage IA, Grade 3, 0/10 nodes, ER+/PR+, HER2+ Surgery 8/18/2014 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 9/15/2014 Herceptin (trastuzumab) Chemotherapy 9/15/2014 Carboplatin (Paraplatin), Taxotere (docetaxel)

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