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Topic: Women on Ovarian Suppression + Hormonal Therapy Unite!

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: Mar 4, 2019 05:50PM

mellee wrote:

Hi all! I'm starting this thread for those of us premenopausal women who are receiving ovarian suppression treatment (Lupron, Zoladex, oopherectomy, etc.) plus hormonal therapy (tamoxifen, exemestane, or another AI). For me, there's a lot of fear and worry over how this will impact my overall well-being... how it will age me... what it will feel like to slam into chemical menopause... the list goes on and on.

I'm hoping this can be a place where we share our experiences and encourage each other.

Diagnosed with a 2.3 cm tumor (Grade 1, Luminal A). 100% ER+, 97% PR+, Her2-, Ki67 6%. Oncotype: 17. Mammaprint: Low risk. 2 years later: local recurrence due to needle biopsy seeding. Dx 10/6/2016, IDC, Right, 2cm, Stage IIB, Grade 1, 2/32 nodes, ER+/PR+, HER2- (IHC) Surgery 11/7/2016 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/7/2017 Reconstruction (right): Silicone implant Dx 12/8/2018, IDC, Right, Grade 1, ER+/PR+, HER2- (IHC) Surgery 1/9/2019 Lumpectomy: Right Radiation Therapy 2/27/2019 Whole-breast: Chest wall Hormonal Therapy 3/12/2019 Zoladex (goserelin) Hormonal Therapy 6/7/2019 Aromasin (exemestane)
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Nov 30, 2019 02:00PM mellee wrote:

Mocame, that is completely unacceptable! That makes me so mad. We've gone through enough. The least our healthcare providers can do is make our treatments as easy and painless as possible. I would bring it up to your oncologist or the manager of the practice you're going to.

It is very easy to numb you beforehand. It is literally a spray that feels really cold. They spray for about 5-10 seconds and it totally numbs the area (I get the injection in my stomach). I'm not sure exactly what product they use, but it's similar to this:

https://www.gebauer.com/painease?gclid=Cj0KCQiAw4jvBRCJARIsAHYewPNHiH1uV3EZ5N-msKri4q4_qLI7C3JUqKjKYyZ_39ZIVvdOfUGsJ90aAnyIEALw_wcB


Diagnosed with a 2.3 cm tumor (Grade 1, Luminal A). 100% ER+, 97% PR+, Her2-, Ki67 6%. Oncotype: 17. Mammaprint: Low risk. 2 years later: local recurrence due to needle biopsy seeding. Dx 10/6/2016, IDC, Right, 2cm, Stage IIB, Grade 1, 2/32 nodes, ER+/PR+, HER2- (IHC) Surgery 11/7/2016 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/7/2017 Reconstruction (right): Silicone implant Dx 12/8/2018, IDC, Right, Grade 1, ER+/PR+, HER2- (IHC) Surgery 1/9/2019 Lumpectomy: Right Radiation Therapy 2/27/2019 Whole-breast: Chest wall Hormonal Therapy 3/12/2019 Zoladex (goserelin) Hormonal Therapy 6/7/2019 Aromasin (exemestane)
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Nov 30, 2019 02:19PM mellee wrote:

I was not checking in to this thread much this month, since I had an insane amount of physical therapy appointments for my lymphedema, plus was bandaging. One-armed typing is not so easy! Anyways, was going over previous posts and saw a couple of questions that were never answered.

Garnersuz77: You asked about the Oncotype DX and the Breast Cancer Index (BCI) test. It's my understanding that they only use the BCI at minimum after you've been on hormonal treatment for at least 4 years. Its purpose is to assess your risk of late recurrence (between 5-10 years) and whether you'll benefit from 10 years of hormonal therapy, as opposed to the standard 5. I asked my MO about doing it now, but she said she wants to wait because there may be even better tests out there by the time I need that question answered. Oncotype is asking a different question: what is your general risk of recurrence and will you benefit from chemotherapy?

A relatively recent JAMA study did a comparison of several different tests, including Oncotype and BCI (https://jamanetwork.com/journals/jamaoncology/fullarticle/2672388). They found that BCI, among others, provided more prognostic information about distant recurrence 5-10 years after diagnosis for node negative women with hormone-positive, HER2-negative disease. But for women with 1-3 positive lymph nodes, the prognostic information was limited. I think once you have a few positive lymph nodes (as I did), things are more unpredictable.

Walden1: This is the first I'm hearing of buserelin. That wasn't an option offered by any of the MOs I consulted with. I'm curious what you've heard about it and how it's different from Zoladex, etc.

Diagnosed with a 2.3 cm tumor (Grade 1, Luminal A). 100% ER+, 97% PR+, Her2-, Ki67 6%. Oncotype: 17. Mammaprint: Low risk. 2 years later: local recurrence due to needle biopsy seeding. Dx 10/6/2016, IDC, Right, 2cm, Stage IIB, Grade 1, 2/32 nodes, ER+/PR+, HER2- (IHC) Surgery 11/7/2016 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/7/2017 Reconstruction (right): Silicone implant Dx 12/8/2018, IDC, Right, Grade 1, ER+/PR+, HER2- (IHC) Surgery 1/9/2019 Lumpectomy: Right Radiation Therapy 2/27/2019 Whole-breast: Chest wall Hormonal Therapy 3/12/2019 Zoladex (goserelin) Hormonal Therapy 6/7/2019 Aromasin (exemestane)
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Dec 2, 2019 02:47PM LillyWasHere wrote:

Do Lupron shots hurt? I had the first one, no pain at all. Second was so painful for 3 days where the injection was. Is it normal?

Dx 7/31/2019, ILC, Left, <1cm, Stage IB, Grade 1, 2/5 nodes, ER+ Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Dec 2, 2019 05:36PM Tmh0921 wrote:

Mocame

I totally agree with melee, I had my first Zoladex injection today. When I got back to the infusion area, the nurse handed me a bag of ice and advised me that she'd like me to hold it on the injection site for 10-15 minutes before they give me the injection. The Zoladex needle is HUGE, but I didn't feel anything. She said holding the ice on the area for a time ahead of the injection numbs the skin and just below the skin.

I'd insist that they at least give you a baggie of ice to hold on the area ahead of time. It doesn't cost a dime, and it makes the experience a lot easier. You have to wait for them to get it prepared anyway....

Tracy

First Dx at 27 years old in 1999, 2nd Dx 2018, 3rd Dx 2019... Current Oncotype: 26 Dx 12/7/1999, IDC, Left, 1cm, Stage IB, Grade 2, 0/14 nodes, ER+/PR+ Surgery 12/22/1999 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 1/31/2000 Whole-breast: Breast, Lymph nodes Hormonal Therapy 2/1/2000 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 8/24/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/5/2018 Lumpectomy: Left Dx 9/7/2018, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 5/31/2019, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 8/5/2019 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/4/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/2/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin)
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Dec 2, 2019 08:06PM OTMom wrote:

Wow. Nobody has ever offered me ice or numbing. Never occurred to me to ask. The monthly lupron I get doesn't bother me though. The injection hurts but it's quick and then it's fine. The three month one was a different formulation and was the kind given in the belly and that one HURT. For a week or so the waistband of my pants was uncomfortable and I had a hard lump there for months after it was supposed to have worn off. I might be asking for ice if I'd stayed on that one.

Lily, I'm guessing it might have to do with location of the shot. I find that some spots are more sensitive than others.

diagnosed at 41 Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/5/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 1/14/2019 Whole-breast: Breast Hormonal Therapy 3/4/2019 Arimidex (anastrozole)
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Dec 2, 2019 08:28PM mocame wrote:

Does everyone get their Zoladex injection in the stomach? I was told that is where they give it. It would be so much better if it was a shot and not the injection, which takes longer. I'm going to meet with my gynecologist in a couple days to discuss the possibility of an Ooph instead of getting the injections every month. We will see.

Dx 2/12/2008, DCIS, Stage 0, Grade 2, 0/2 nodes, ER+/PR- Dx 8/22/2019, IDC, Left, <1cm, Stage IA, ER+/PR+, HER2- Radiation Therapy 10/6/2019 Whole-breast: Breast Hormonal Therapy 11/28/2019 Zoladex (goserelin)
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Dec 2, 2019 09:04PM Tmh0921 wrote:

I get mine in the stomach, and it’s an injection that inserts a pellet that dissolves over a month

First Dx at 27 years old in 1999, 2nd Dx 2018, 3rd Dx 2019... Current Oncotype: 26 Dx 12/7/1999, IDC, Left, 1cm, Stage IB, Grade 2, 0/14 nodes, ER+/PR+ Surgery 12/22/1999 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 1/31/2000 Whole-breast: Breast, Lymph nodes Hormonal Therapy 2/1/2000 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 8/24/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/5/2018 Lumpectomy: Left Dx 9/7/2018, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 5/31/2019, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 8/5/2019 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/4/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/2/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin)
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Dec 2, 2019 09:17PM ElaineTherese wrote:

Yep, I get Zoladex in the stomach without any numbing. It's a big needle and all but I barely feel it. I usually don't even need a bandaid unless the nurse hits a vein.

I thought about gettin an ooph, but my OB/GYN said that women who keep their ovaries tend to live longer than women who have them out. Plus, I've been getting my shot for 4.5 years now. Only 5.5 more years to go! JK; we'll probably test my estrogen levels again in a few years to see whether I'm menopausal.

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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Dec 2, 2019 10:21PM Daylightdancer666 wrote:

Hey all =)

I have been having my zoladex injection since June its not bothered me at alll used to watch it going in stomach yes maybe I'm odd but ha but last month it hit me how big needle was and some reason maybe I subconscious tensed up but hurt like helll and hope now this month has come around on Wednesday doesn't hurt me as much xxx

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Dec 3, 2019 05:34AM mocame wrote:

I'm wondering if it was more about the nurse who did it than the actual injection? My injection bled almost through a bandaid and I turned black and blue (it's now yellow). I might have been a little tense but I was expecting it to be less painful that it was so I don't think I was too tense and worked up about it. I'm 50 so I know I don't have too many years left before menopause would hit. That is why I'm considering the ooph. If I was younger, I probably wouldn't consider it yet.

Dx 2/12/2008, DCIS, Stage 0, Grade 2, 0/2 nodes, ER+/PR- Dx 8/22/2019, IDC, Left, <1cm, Stage IA, ER+/PR+, HER2- Radiation Therapy 10/6/2019 Whole-breast: Breast Hormonal Therapy 11/28/2019 Zoladex (goserelin)
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Dec 4, 2019 07:17PM Daylightdancer666 wrote:

Well had my zoladex today barely felt it and its same nurse who does it as I go to my doctors surgery and nurse does there my next one is new years eve. I may been tense we were discussing my mums csncee who knows or fact I realised how big needle was ha

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Dec 4, 2019 07:31PM mellee wrote:

I don't know what the injection feels like without numbing, but with the numbing spray it is 100% painless, which is just the way I like it! I have bruised really badly 3 out of 9 times. And last time I was literally gushing blood from my stomach (the nurse must have hit a superficial vein). But never any pain.

Diagnosed with a 2.3 cm tumor (Grade 1, Luminal A). 100% ER+, 97% PR+, Her2-, Ki67 6%. Oncotype: 17. Mammaprint: Low risk. 2 years later: local recurrence due to needle biopsy seeding. Dx 10/6/2016, IDC, Right, 2cm, Stage IIB, Grade 1, 2/32 nodes, ER+/PR+, HER2- (IHC) Surgery 11/7/2016 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/7/2017 Reconstruction (right): Silicone implant Dx 12/8/2018, IDC, Right, Grade 1, ER+/PR+, HER2- (IHC) Surgery 1/9/2019 Lumpectomy: Right Radiation Therapy 2/27/2019 Whole-breast: Chest wall Hormonal Therapy 3/12/2019 Zoladex (goserelin) Hormonal Therapy 6/7/2019 Aromasin (exemestane)
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Dec 5, 2019 09:38PM LillyWasHere wrote:

Thank you. I assume your shot was on the stomach area. I am getting mine on my buttocks. Thank you for getting back to me. I will ask for numbing spay next time.

Dx 7/31/2019, ILC, Left, <1cm, Stage IB, Grade 1, 2/5 nodes, ER+ Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant

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