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Topic: Hormontherapy choices for premenopausal women

Forum: "Middle Age" 40-60(ish) Years Old With Breast Cancer —

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Posted on: Jun 13, 2018 09:59AM - edited Sep 24, 2018 08:18PM by Walden1

Walden1 wrote:

MO has given me a choice between tamoxifen and ovarian suppression injection with AI. I am 44 and was premenopausal before chemo. It's been almost two months post chemo and I haven't had a period yet. MO recommends starting with ovarian suppression + AI because it lowers reoccurance, but noted it doesn't improved overall survival. There are so many positives and negatives to each choice. Not sure now to choose.

Did some reading of credible sources that suggest the OS + AI option is not a significant benefit for all premenopausal women. Might be for some high risk women and not for the others. would love to hear what advice your MO had for hormone therapy, and why they recommend one over the other for a premenopausal women (or someone like me who's status is questionable because they had menopause from chemo).

Dx 12/28/2017, DCIS/IDC, Right, 2cm, Stage IIA, Grade 3, 0/7 nodes, ER+/PR+, HER2- Chemotherapy 1/10/2018 AC + T (Taxol) Surgery 5/2/2018 Mastectomy: Right Radiation Therapy Hormonal Therapy Aromasin (exemestane), Zoladex (goserelin)
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Jun 13, 2018 10:11AM - edited Jun 13, 2018 10:12AM by Meow13

If you choose tamoxifen make sure they are checking the uterus regularly. Uterine cancer is rare and you don't want to catch it too late. My poor SIL's doctor dropped the ball she was a little older than you are, I guess the doctor thought it is so rare he wasn't checking.

AI drugs, well I think more achy joints sometimes some unpleasant side effects. I had extreme dry eye on exemestane. It is a good thing you are er and pr positive both kinds should be effective for you.

Good luck.

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Jun 13, 2018 10:26AM Cpeachymom wrote:

I'm actually getting ovarian suppression plus Tamoxifen, which seems to be a middle of the road option. Some of the factors were bone health, age, premenopausal, and fertility. Wasn’t entirely sure I was done having babies. It’s working and side effects are tolerable for me.

39 at Dx. Fate whispers to the warrior, 'You can not withstand the storm.' The warrior whispers back, 'I am the storm.' Dx 6/21/2017, IDC, Right, 4cm, Stage IIB, Grade 1, 1/3 nodes, ER+/PR+, HER2- Surgery 7/5/2017 Lymph node removal: Sentinel; Mastectomy: Right Hormonal Therapy 9/11/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 9/18/2017 Lymph nodes, Chest wall Surgery 10/10/2018 Reconstruction (right): Tissue expander placement Hormonal Therapy Zoladex (goserelin)
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Jun 13, 2018 10:44AM - edited Jun 13, 2018 10:44AM by Lula73

The SOFT & TEXT trials just confirmed that there is a statistically significant benefit to do ovarian suppression + AI especially in node positive and/or cancers that need chemo. You are the perfect profile for ovarian suppression + AI from that aspect. Have you considered ovary removal

Why no difference in survival? My personal position is that when they do these trials, they are looking at all cause mortality. So if you died in a car accident or from a heart attack during the study timeframe, you were still counted as one who didn't survive. This can skew the numbers especially when you consider that the average age of study participants in these trials is around 60 years old. We know that as we age more things start to go wrong...hypertension, diabetes, heart disease, etc. which put us at increased risk for death from these conditions. Additionally, a 60 year old is closer to end of life from natural causes than someone in their 30's or 40's. To me, younger women need this information and studies that are focused only on a younger subset of bc patients would be very beneficial in providing it. As a bc patient, I'd also like the data broken down to include survival stats based on death from bc or its complications not just overall survival.

Has your MO done lab work to determine if chemo indeed made you menopausal? Just because you don't have a period doesn't necessarily mean you're in complete menopause or that the periods won't start up again given another month or 3. Sounds like your MO is covering all the bases. On SEs, doesn't matter if you choose tamoxifen or ovarian suppression with AI, both options carry very similar SE stats. The big differences are uterine cancer and blood clots with tamoxifen and bone loss potential on the AI.

Hope this helps!

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/14/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/3/2018 Femara (letrozole)
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Jun 13, 2018 10:55AM Mommato3 wrote:

It's possible for your periods to return up to two years after you finish chemo. Mine returned about four months after I finished Taxol. At your age, the doctor wouldn't be able to determine if you'll go back to being premenopausal until a couple years pass or your blood tests show premenopausal status. My blood work kept coming back menopausal too but it clearly changed after a while. You can't take an AI if you are premenopausal. That's why you'd need to do OS + either AI or Tamoxifen.

AC-THP UMX Dx 4/25/2014, IDC, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2+ Hormonal Therapy 4/19/2015 Arimidex (anastrozole)
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Sep 23, 2018 09:59PM Walden1 wrote:

Thanks for all your responses. I’ve been on ovarian suppression for about 6 weeks and exemestane for 2 days. So far the main side effect is the return of hot flashes. They went away after chemo, which was nice while it lasted. I also have this slight jittery feeling (the way you feel if you have too much caffeine). My skin has been dry since chemo, but is now more dry, my eyes are also very dry.

Anyone notice their hair growth slow down? Not sure if I’m imagining this but it seems the hair on my legs and arm pits has really slowed down. Is estrogen related to hair growth?

Good news is I’ve taken up running and my energy levels are good.

Still often wonder if I should reconsider tam rather than examestane. Thank you for the tip on the soft/text trial. I’ve read it in great detail. Unfortunately it’s not clear to me if I am in the category of people who greatly benefit, or slightly benefit. My MO keeps saying all options are very effective so it’s up to me, but the exemestane might give me a 3-10% advantage, so try it first. In the end I decided to take her advice, although I hate the idea of becoming premenopausal before my time. Wish my MO could be more specific about my risk category, so I could stop questioning whether exemestane is worth the added side effects.

Luna73-I was never tested to see if I was Postmenopausal after chemo. MO said I am considered premenopausal because I had a period with in the last 12 months and my periods could return,so they follow premenopausal protocols for my hormone treatment rather than test and monitor your estrogen status.

Anyone here advised to start on tamoxifen and switch to AI when they are confirmed to be Postmenopausal ?

Dx 12/28/2017, DCIS/IDC, Right, 2cm, Stage IIA, Grade 3, 0/7 nodes, ER+/PR+, HER2- Chemotherapy 1/10/2018 AC + T (Taxol) Surgery 5/2/2018 Mastectomy: Right Radiation Therapy Hormonal Therapy Aromasin (exemestane), Zoladex (goserelin)
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Sep 24, 2018 06:23AM NotVeryBrave wrote:

I was 50 when diagnosed and still had very regular periods. Chemo stopped them and still I was considered premenopausal. My MO stated at the time that he planned for me to be on Tamoxifen for probably two years and then switch to an AI if confirmed to be menopausal then.

I tried Tamoxifen for three months and had a lot of SE's that were not tolerable so I quit taking it. After finishing Herceptin and feeling better, I intended to try it again at a lower dose - kind of ease into it. But then I had pain months later and an US showed a very thick uterine lining and an ovarian cyst so that had to be followed. The lining continued to thicken and a D&C was recommended by my GYN. But then I had a period - 18 months after they stopped and almost 52 years old!

No periods since (3 months) and uterine lining is back to thin. Repeat hormone levels show Estradiol is lower and FSH is higher so more indicative of menopause. MO doesn't recommend ovarian suppression for me and doesn't think removal is necessary (although he used to discuss that). I don't really want the AI's since I already have Osteopenia. Of course - I don't really want any of this.

I'm waiting until I see my GYN to discuss the lower dose of Tamoxifen and try to figure out what to do. I feel like there's no "net" and I'm just hanging out there, but the choices suck, too.


TCHP x 6 with pCR. One year of Herceptin. DTI pre-pec surgery. Quit Tamoxifen after 3 months. Dx 11/21/2016, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 12/18/2016 Perjeta (pertuzumab) Targeted Therapy 12/19/2016 Herceptin (trastuzumab) Chemotherapy 12/19/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 5/9/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 9/9/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 24, 2018 07:56AM - edited Sep 24, 2018 08:01AM by Lynndoula

I have been taking tamoxifen 20mg for a little over a year. I deal with a lot of hot flashes, weight gain of about 10 pounds and joint pain and stiffness.

I have asked my oncologist about taking 10mg and she maintains that 20mg is the only dose/possibility. I feel like some tamoxifen would be better than no tamoxifen.... For the past four days I have cut the pill and am probably taking 15mg because it is more than half. My hot flashes have gotten better for sure. especially at night. I hate going against medical advice... but geesh... there has to be some gray area. Not everyone needs the same dose....


brief history of my dx treatment:

IDC stage one, ER + - dx at age 44

lumpectomy and lymph node dissection - no positive nodes

oncotype score of 29 so did 8 rounds of chemo AC/T

39 rounds of radiation




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Sep 24, 2018 07:38PM - edited Sep 24, 2018 07:39PM by NotVeryBrave

If you look into research on lower dose Tamoxifen then you will see that there have been some promising studies on much lower dosages being very effective. A lot of these have been in mice models and have been equivalent to 5 mg per day or 10 mg three times a week or 20 mg once a week. The reason that 20 mg daily is recommended is because that is what has been studied and proven in humans. The dose used to be even higher and even more people would not continue to take it. As with most things - higher doses lead to more SE's.

My MO tells me that I will most likely have the same SE's on a lower dose and yet not gain the benefit of the regular dose. I also feel that some Tamoxifen (or other hormonal treatment) is better than none. And who's to say what the optimum dose for me might be? I'm pretty sensitive to most drugs.


TCHP x 6 with pCR. One year of Herceptin. DTI pre-pec surgery. Quit Tamoxifen after 3 months. Dx 11/21/2016, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 12/18/2016 Perjeta (pertuzumab) Targeted Therapy 12/19/2016 Herceptin (trastuzumab) Chemotherapy 12/19/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 5/9/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 9/9/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 5, 2018 12:10PM - edited Oct 5, 2018 12:13PM by Bostoniangal25

Lynn doula I have the same idc stage 1, grade 3 oncoscire 29, so I m doing 4 Taxotere and cytoxan and total 4 , but I had mastectomy! I m scared to take tamoxifen , because I m 41 only I don't want to gain weight, I don't want vaginal atrophy, I don't want hot flashes , that stupid cancer ..... I hope they can give me a lower dose ! And also don’t want to develop uterine cancer, and joint pain..

I m not looking forward to that part of treatment!!! Is there a light at the end of tunnel

Dx 5/30/2018, DCIS/IDC, Left, <1cm, Stage IB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Surgery 7/3/2018 Mastectomy: Left; Reconstruction (left): Silicone implant Surgery 7/3/2018 Mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 5, 2018 02:30PM raysofsunshine07 wrote:

I was diagnosed 5 years ago when I was 41 years old.  I have taken Tamoxifen for 5 years and in my situation I have had no side effects.  Everyone is different and I know you hear mainly about the worst side effects of the drug happening to people.  There are many of us that handle it very well!!  I had my follow up with my ONC last week and have decided to continue for another 5 years.  It will give me an additional 25% benefit.

Dx 11/4/2013, IDC, Stage I, 0/1 nodes, ER+, HER2- Surgery 12/4/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 2/1/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/16/2014 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 5, 2018 07:03PM - edited Nov 5, 2018 07:03PM by Walden1

Rayofsunshine-thanks for sharing your experience, I am glad to hear you have done so well. Can I ask if the oncotype was used at all in deciding to extend tamoxifen to 10 years. I know it can be a great benefit to some, but not sure how it isevaluated

Dx 12/28/2017, DCIS/IDC, Right, 2cm, Stage IIA, Grade 3, 0/7 nodes, ER+/PR+, HER2- Chemotherapy 1/10/2018 AC + T (Taxol) Surgery 5/2/2018 Mastectomy: Right Radiation Therapy Hormonal Therapy Aromasin (exemestane), Zoladex (goserelin)
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Nov 7, 2018 01:01PM raysofsunshine07 wrote:

Walden1 - I have done my own research on the benefits of going 10 years on Tamoxifen - so when I went in for my appointment I basically told her that's what I wanted to do.  I am still pre-menopausal - so we did have a conversation about if in the next 5 years I should go into menopause do I continue the Tamoxifen or go to the AI's.  She told me there is a ever so slight benefit to switch.  For me I would much rather stay on the drug I am doing well on rather than switch and potentially have joint issues.  If there was a huge benefit of switching I would consider it- but as long as I'm here on this earth I'm going for quality of life!  My Dr. and I didn't talk about oncotype at all.  I had 2 tumors tested and my scores were 9 and 12.

Dx 11/4/2013, IDC, Stage I, 0/1 nodes, ER+, HER2- Surgery 12/4/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 2/1/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/16/2014 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 7, 2018 01:02PM - edited Nov 7, 2018 01:03PM by raysofsunshine07

This Post was deleted by raysofsunshine07.
Dx 11/4/2013, IDC, Stage I, 0/1 nodes, ER+, HER2- Surgery 12/4/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 2/1/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/16/2014 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 8, 2018 04:49AM Bostoniangal25 wrote:

raysofsundhine, May I ask question about SE: when you said you didn’t have them, are there regular SE you didn’t have such fatigue insomnia mood swings , or ypu specifically didn’t develop menopausal SE such hot flushes dry vaginsl walls and etc?

I m starting on tamoxifen and I m 41 married , so would like to know! Thank you very much!!!

I also was recommended to do 10 years in Boston

Dx 5/30/2018, DCIS/IDC, Left, <1cm, Stage IB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Surgery 7/3/2018 Mastectomy: Left; Reconstruction (left): Silicone implant Surgery 7/3/2018 Mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 10, 2018 03:12PM Rhuny wrote:

I have been on Tamoxifen for two years with no side effects. I was dx at 39 and had a local recurrence this year at 42 so maybe that’s my side effect. Ha

Dx 5/2016, ILC, Right, 2cm, Stage IIA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 9/2018, LCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3DCRT: Breast, Lymph nodes
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Nov 13, 2018 07:33AM Bostoniangal25 wrote:

Rhuny, sorry to hear about your recurrence- is it new cancer?

You had lumpectomy and then mastectomy? And tamoxifen didn’t protect you, did you take 20 mg?

I just got mine pills from pharmacy and scared to take it!

Did it thinned your hair? Thsnks

Dx 5/30/2018, DCIS/IDC, Left, <1cm, Stage IB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Surgery 7/3/2018 Mastectomy: Left; Reconstruction (left): Silicone implant Surgery 7/3/2018 Mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Nov 14, 2018 09:34AM raysofsunshine07 wrote:

Bostoniangal25 - I have been very blessed that I have not had any side effects at all.  I hope my next 5 years is just as smooth.  Rhuny, I am sorry to hear about your reoccurrence.  Did they catch it in your regular check up?

Dx 11/4/2013, IDC, Stage I, 0/1 nodes, ER+, HER2- Surgery 12/4/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 2/1/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/16/2014 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 17, 2018 07:02PM Bostoniangal25 wrote:

thanks Rayofdundhine!!!! Wish you the same!!

Dx 5/30/2018, DCIS/IDC, Left, <1cm, Stage IB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Surgery 7/3/2018 Mastectomy: Left; Reconstruction (left): Silicone implant Surgery 7/3/2018 Mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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13 hours ago Peregrinelady wrote:

For those of you who are wondering about the benefit of extending antihormonals past 5 years, there is a test called BCI (breast cancer index) that will show (based on your tumor) the benefits of continuing therapy

Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/18/2016 Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)

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