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All TopicsForum: Hormonal Therapy - Before, During and After → Topic: 2017 Premenopausal Tomoxifen Newbies

Topic: 2017 Premenopausal Tomoxifen Newbies

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: Jan 7, 2017 10:52AM

Variable wrote:

I am in the decision making stage of starting Tomoxifen and am looking for others either struggling with the decision, or just starting this course of treatment. Any thoughts, vents, or experiences to help get through this would be appreciated :)

Dx 8/1/2016, IDC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Jan 7, 2017 03:39PM Dollydimples123 wrote:

Hi,

I was very unhappy about taking this hormone treatment. I felt I was going to have thousands of horrible side effects and pile on weight. The reality is I have little or no side effects at all! I take the pill at about 10pm before bed and don't even notice any discomfort on this. I have few if any hot flushes and in fact if I stay off caffeine I get by with zero flushes.

Please don't be afraid of a drug that is there to help you. I think you need to know that the vast majority of women on these pills have no problems with them. Take the treatment you are lucky enough to be offered.

Dx IDC, Left, 1cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2-
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Jan 7, 2017 03:59PM RedemptiveSufferer wrote:

Variable, I know Tamoxifen will be part of my treatment plan, but am still waiting to hear if I need chemo first. I'll find out Wed. when I receive Oncotype test results. Honestly, I hate taking any medication at all, I don't care what it is. But to second what Dollydimples mentioned, a good friend of mine has been on it for about a yr. and has had virtually no side effects. She mentioned she gets swelling in her feet/ankles if she doesn't walk regularly, but that's it. I know it's different for everyone. As much as I hate to rely on meds, I'd hate to not take it, have a recurrence, and wonder if it could have been prevented had I taken the Tamoxifen. I know it's a hard choice...like so much of our treatment options. Best wishes with your decision.

"Life shouldn't be measured by duration but your donation...what you give of yourself in this life." ~ Greg Laurie Dx 11/4/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/6/2016 Mastectomy: Left; Reconstruction (left): Tissue expander placement
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Jan 10, 2017 10:58AM Crunchy50 wrote:

I've been on Tamoxifen for about 3 months. My side effects are hot flashes and night sweats - and the ensuing broken sleep that comes with the night sweats. I'm working on how I can reduce those effects - exercising more, reducing caffeine, no alcohol, cool clothes, lots of water etc. The effects are annoying, and I'm tired.

However - I am going to continue to take the drug. I've had surgery, chemo and radiation. I want to know that I've done all I can do to reduce my chances of recurrence.

Now let me go turn up the air conditioner :)

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Jan 10, 2017 11:20AM Jezikah wrote:

Hey all. I'm going through chemo right now and my last treatment is scheduled for March 22nd. My cancers (2 different tumors, 2 different cancers) were ER+/PR+ 95%/60% and 99%/70% so I will definitely be taking Tamoxifen. My MO recommends for 10 yrs - yikes! I will hopefully come off in a few years to have a baby, but since my cancers are so estrogen receptive, I need to make sure my levels are staying down to prevent recurrence.

Found a lump in July 2016 while undressing. Dx at 33 years old. ATM gene mutation. Bilateral mastectomy and immediate reconstruction. 2 IDC tumors and DCIS in L breast. Smaller tumor was different cancer and HER2+ Dx 7/29/2016, IDC, Left, Grade 2 Surgery 8/30/2016 Lymph node removal: Left, Sentinel Dx 9/2/2016, IDC, Left, Stage IA, 0/2 nodes Surgery 9/29/2016 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Dx 10/3/2016, DCIS/IDC, Left, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- (FISH) Dx 11/14/2016, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2+ (FISH) Targeted Therapy 12/7/2016 Herceptin (trastuzumab) Chemotherapy 12/7/2016 Carboplatin (Paraplatin), Taxotere (docetaxel)
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Jan 10, 2017 11:19PM jcn16 wrote:

Hi ladies!

I had right MX in December and met with the MO today. Wasn't expecting her to recommend Tamoxifen because my BS didn't think it would improve the odds of preventing DCIS in my remaining breast by much. My MO wants me to try it and I'm seriously considering it. Just worried it will throw me into full-blown menopause because I'm 53. Was having regular night sweats 2 years ago but made some changes (exercise, diet), and they went away. Anyone pre-menopausal, in their 50's,and on Tamoxifen?

Dx 8/2016, DCIS, Right, Stage 0, Grade 2, 0/2 nodes, ER+/PR- Surgery Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): DIEP flap
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Jan 11, 2017 03:16AM sophiemaroon wrote:

Pre-menopausal reluctant tamoxifen newbie here...

When I was first diagnosed, I was quite adamant I would never take Tamox. It was going to be "surgery and done". I really dislike messing with my endocrine system (have taken thyroid for decades and have had many troubles along the way), and am especially concerned about my sex hormones!

However, I've decided that I should at least give it a trial run. My oncotype DX score is 13 i.e. 10-year 8% distant metastases risk WITH 5 years of tamox. I'm guesstimating my risk of recurrence without tamox would be somewhere in 10-20% range based on it roughly halving risk.

After reading about people's experiences on these boards, it sounds like you really can't predict how things will go for you with the side effects, and some people certainly have been reassuring. I'm trying to view it as a fun experiment! My menstrual cycles are super regular but pretty horrible in terms of PMS and bleeding, so mildly hopeful that tamox might reduce the bleeding and/or frequency of periods at least. Also concerned about mood effects, cognitive effects, and messing with my sex life. I think maybe I can live with hot flashes. Dr. says give it three months or so to see how cycles change. I will post again with my experiences.

Jcn16--tamox itself will not put you into menopause--it selectively blocks estrogen receptors in breasts and other tissues while acting like an estrogen in others, but does not induce or speed up menopause since the ovaries keep working. Of course, the estrogen blocking often causes the symptoms of menopause including those hot flashes. I can't post the link, but you can google this study: "Association of tamoxifen use and ovarian function in patients with invasive or pre-invasive breast cancer"--it does say that periods are more likely to stop in older pre-menopausal women.


Age 41 at dx; Hodgkin's Disease w/mantle radiation 24 years prior; oncotype 13 Dx 10/21/2016, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 12/15/2016 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 1/18/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 11, 2017 08:45AM jcn16 wrote:

Sophiemaroon,

Thanks for the info and perspective - I'll check out out the study you referenced. I too planned to be "surgery and done." Hate taking medicine unless absolutely necessary. (It took my family doctor years to convince me to take a long-acting inhaler for asthma). Glad you mentioned the possible effect on thyroid. I have a benign thyroid nodule that was biopsied a few years ago. It had shrunk the in the latest ultrasound. Will ask my MO about possible effects on nodule before deciding on the tamoxifen. Thank you!

Dx 8/2016, DCIS, Right, Stage 0, Grade 2, 0/2 nodes, ER+/PR- Surgery Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): DIEP flap
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Jan 11, 2017 08:59AM dtad wrote:

Dollydimples....I'm happy for anyone who does well on anti hormone treatment. I'm also not disputing their importance. However, its just not accurate that the vast majority of women don't have problems on them. I worry that the incorrect statement undermines those who do experience SEs. The fact remains that 40 percent of women on Tamoxifen do not complete the recommended 5 years due to SEs. Add those who do stay on them and experience SEs from mild to severe and that's a big number. We need better treatment options so the compliance rate is much lower. Good luck to all navigating this disease.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jan 11, 2017 11:32AM - edited Jan 11, 2017 11:34AM by jcn16

This Post was deleted by jcn16.
Dx 8/2016, DCIS, Right, Stage 0, Grade 2, 0/2 nodes, ER+/PR- Surgery Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): DIEP flap
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Jan 11, 2017 12:15PM sophiemaroon wrote:

Hi Jcn,

My MO said that tamoxifen doesn't affect thyroid medication itself, so I'm not sure if would affect your thyroid gland. But he did say that it's very important to keep thyroid levels in the healthy range while on tamoxifen because if you get too much or too little thyroid, the tamoxifen is under- or over-metabolized.

Age 41 at dx; Hodgkin's Disease w/mantle radiation 24 years prior; oncotype 13 Dx 10/21/2016, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 12/15/2016 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 1/18/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 11, 2017 03:40PM labelle wrote:

My endo says tamoxifen can affect how the thyroid works/doesn't work. I've taken thyroid medicine for years and my Hashimoto's was well controlled prior to starting Tamoxifen, but my endo wanted to see me /have my levels checked every 3 months (instead of every 6-8 months as usual) after I started on the Tamoxifen to be sure it wasn't causing problems that would make it necessary to adjust the dosage of my thyroid medicines.

No problems for me, everything in the thyroid dept. stayed the same, but IMO our MOs are not the best sources of information on some of the side effects of Tamoxifen. Mine certainly tends to play down the side effects of Tamoxifen, as do many MOs, if what I read on this site is any indication.

If you have pre-existing thyroid problems, you should be consulting an endocrinologist about how Tamoxifen (and radiation treatment) might affect your thyroid and thyroid medicines. My endo, not my MO, also told me not to take my thyroid meds and tamoxifen at the same time.

Dx 9/29/2014, IDC: Tubular, Left, <1cm, Stage IIA, Grade 1, 1/11 nodes, ER+/PR+, HER2- (FISH) Surgery 11/13/2014 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy Whole-breast: Breast
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Jan 11, 2017 09:30PM jcn16 wrote:

Sophiemaroon and Isabelle, other than the nodule I don't have any other problems with my thyroid. Thanks so much for your insight! Not sure what I will decide.

Dx 8/2016, DCIS, Right, Stage 0, Grade 2, 0/2 nodes, ER+/PR- Surgery Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): DIEP flap
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Jan 12, 2017 11:28AM labelle wrote:

I think even if I didn't have a thyroid condition I would still want to have my thyroid levels checked once a year while on Tamoxifen. Just to be sure. Checking thyroid levels is a simple blood test any GP can order. See an endo if there is a problem. IMO thyroid testing should be more routine than it is for everyone.

Dx 9/29/2014, IDC: Tubular, Left, <1cm, Stage IIA, Grade 1, 1/11 nodes, ER+/PR+, HER2- (FISH) Surgery 11/13/2014 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy Whole-breast: Breast
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Jan 12, 2017 11:34AM jcn16 wrote:

Thanks Isabelle! That's rock-solid advice. I'll add it to my list of questions for my next visit with the MO. Plus I'm sure my GP would agree to run it with my blood test - he was the one who found the thyroid nodule.

Dx 8/2016, DCIS, Right, Stage 0, Grade 2, 0/2 nodes, ER+/PR- Surgery Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): DIEP flap
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Feb 2, 2017 12:19AM Rubiayat wrote:

Hello all! I'm starting tamoxifen tomorrow and wanted to say hello to other newbies. I declined to take tamoxifen three years ago when I was diagnosed and had my first surgeries. I was scared of the SEs and wanted to believe I could take good care of myself and reduce my risk. My tumor was small....I was in control. After three years my thinking has changed. I want to maximize my chances that I won't have a recurrence, so I'm going to give this a shot. I'm 44 and the prospect of how my body and sexual desire may change weighs heavily on me. But I won't know until I try. Hoping for the best for myself and all of you ladies out there!!

Oncotype 28 Dx 11/7/2013, IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 11/7/2013, DCIS, 1cm, Stage 0, Grade 3, 0/3 nodes Surgery 12/11/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 12/20/2013 Lumpectomy: Left Surgery 2/11/2014 Lumpectomy: Left Surgery 5/6/2014 Mastectomy: Left; Reconstruction (left): TUG flap Surgery 1/16/2015 Reconstruction (left) Hormonal Therapy 2/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 3, 2017 12:57AM sophiemaroon wrote:

Rubiyat, good for you for giving it a try!

I am only 16 days in, so probably too early to really report my experience, and I'm sure things will change, but I have noticed a few things. I have had a couple of slow, lame orgasms recently (do only women have those?), but desire and arousal are still there--trying not to read too much into it and hoping for the best. My sexuality was very healthy before I started it--I felt perfectly sexual again about week after my BMX, so if I do notice big changes in that area I'll know the tamox is the culprit! Other things I've noticed which are not normal for me: spotting about a week in, but it stopped, some extra pimples, and strong random hunger pangs and cravings for carbs unlike anything I have experienced before. Also having some bad early morning insomnia, but I tended to get that before, so can't necessarily pin on tamox, but it seems like it may be making it worse. Overall, I have this feeling like my body is saying "what the hell is going on here???" I suppose having tissue expanders in doesn't help.

Unless things are really terrible, I am committed to at least a three month trial. But I know the absolute risk reduction for someone like me who is early stage and good prognosis is just not that high, so I will probably not accept anything too quality-of-life lowering. Also, the studies do show that even one year on it reduces risk, though not nearly as much as 5+. So, worst case, I might at least try to go for a year.

Age 41 at dx; Hodgkin's Disease w/mantle radiation 24 years prior; oncotype 13 Dx 10/21/2016, DCIS/IDC, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 12/15/2016 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 1/18/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 8, 2017 03:55AM TJL3 wrote:

I didn't realize that if I take (put up with) Tamoxifen for a year I still get benefits. I thought I had to endure 5-10 years on this stuff. The SE aren't fun, but my MO changed my dose to 20mg every other day and I feel better. So if you're fed up with the SE - you may want to change the dose.

Does anyone know if alcohol increases the risk of reoccurrence? I'm meeting with various GP's and one of them told me that even 1 glass of wine (per evening) will increase my risk of reoccurrence! And that I shouldn't bother taking the Tamoxifen because it won't work if I'm having a glass of wine at night! Can it be true

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Feb 8, 2017 09:16AM dtad wrote:

TJL3...Hi there. I am wondering what your MO said when he lowered your dosage of Tamoxifen to every other day. As far as I know there are no studies that have been done on the lower dosage. Alcohol is not encouraged while fighting BC. Good luck and keep us posted.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Feb 15, 2017 09:46AM Rubiayat wrote:

Thanks Sophie!

TJL3 - I've read a lot of studies that show alcohol increases your risk of a recurrence, but it wasn't clear to me to what degree your risk goes up and with what quantity of alcohol. Saying that tamoxifen won't work if you are having one glass of wine a day seems like an extreme statement to me.

Well, two weeks in and I'm noticing a few minor things.....some fatigue, waking in early morning and not falling back to sleep, irritability, acne, lower libido, vaginal discharge and irritation. Nothing extreme and some of these things I experienced regularly before tamoxifen. I should be starting my period today and am curious to see if it comes....I don't feel any cramps or bloating which I usually do right before. The irritability and skin breakout could be PMS?

I have been taking my pill in the morning because I'm afraid I will forget at night and it is much easier for me to be consistent about the time of day if I take it in the morning. I am thinking of taking in the evening if the fatigue gets worse as that seems to work for some women. I've had a few days were I've felt really fuzzy, almost like I do on cold medicine. I have been really stressed and not sleeping well, so that may be it. Although I noticed if I get up from my desk at work and go for a walk outside, the fuzziness goes away for awhile. Just need to keep moving!!

Oncotype 28 Dx 11/7/2013, IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 11/7/2013, DCIS, 1cm, Stage 0, Grade 3, 0/3 nodes Surgery 12/11/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 12/20/2013 Lumpectomy: Left Surgery 2/11/2014 Lumpectomy: Left Surgery 5/6/2014 Mastectomy: Left; Reconstruction (left): TUG flap Surgery 1/16/2015 Reconstruction (left) Hormonal Therapy 2/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 15, 2017 09:52AM CELinVA wrote:

I just finished my five years of tamoxifen. I am 50, was DCIS/lumpectomy/radiation 6 years ago. I actually was scared to take the tamox so it took them a year to talk me into it. I waited and waited for the side effects and I never got any that I'm aware of. I never had a hot flash or anything. I was never skinny, but always around 130 pounds at the time; I think tamox made weight loss difficult. I'm up about 5 pounds over the 5 years and actually now just online to see what the effects of finished tamox will be. Two week so far and nothing. I would encourage you to give it a try and maybe you'll be lucky like me. I also wonder if only people with problems on tamox are the ones actually posting.

Dx 7/2/2010, DCIS, <1cm, Stage 0, Grade 2, ER+/PR+
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Feb 15, 2017 09:35PM ajbclan wrote:

I found out yesterday that I'll be starting Tamoxifen in a few weeks, and I've been curious/worried about what side effects I'll be dealing with as well. She said if I truly stay in menopause (chemo induced so far)- then she will switch me after a year to something else. All of the feedback is so helpful! Thanks ladies!

Dx 8/9/16 with "multiple masses", chemo from 8/24/16 to 12/14/16- PCR! BMX 1/31/2017. Dealt with a blood clot and cellulitis. Wife of 19 years, mom to a 14 year old daughter and a 5 year old English Mastiff! Dx 8/9/2016, IDC, Right, 4cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR+, HER2- Chemotherapy 8/24/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 1/31/2017 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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13 hours ago Shaz1970 wrote:

I started Tamoxifen yesterday, wondering how long till I start to feel any SE, will that start all at once, or increase over time?? Questions questions...all the time 😆😆


Thanks

Shaz.

Dx 1/31/2017, DCIS, Left, 1cm, Stage 0, Grade 3, 0/4 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 3/21/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/18/2017 Whole-breast: Breast

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