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Topic: Is Tamoxifen Worth It?

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Feb 11, 2018 03:47AM - edited Feb 11, 2018 03:48AM by Dustien

Dustien wrote:

Hi everyone...new to Cancer and to these boards.  Still trying to get things straightened out in my head.  Diagnosed last Monday, Feb 5th, Saw Breast Surgeon on the 7th, waiting now to see if Insurance will cover an MRI on a dedicated Breast Machine.  They wanted a clinical review when the request for pre authorization was submitted on Friday. 

Now, If there are no surprises on the MRI, Dr. says my IDC is Stage1, ER+ PR+, Ki-67 4%, and HER2/neu 1+.  He explained what all that meant and said I have options, letting me know that however I went was completely up to me since having a lumpectomy with radiation (Brachytherapy or Whole Breast) will carry the same survival rates and risk of reoccurrence as a Mastectomy.  He also mentioned my taking Tamoxifen for five years since my positive ER and PR numbers.

Searching the net Tamoxifen is terrifying me.  Increasing Blood Pressure, higher cholesterol rates (I already have both of these), night sweats and hot flashes (never had any of these and I'm post menopausal, bone pain (very scary), brittle bones (even scarier).  I was very concerned until I came across a page that allowed me to answer some questions about my diagnosis and then assessed my risk of reoccurrence.  I copied and pasted my results below.  According to this it looks as if I'm only 1 or 2 % more likely to not have a reoccurrence.  If that be the case, then, I don't think the side effects of Tamoxifen (or any hormone therapy for that matter) are worth the risk in my case.  What do you think?

PREDICT Tool Version 2.0: Breast Cancer Overall Survival; Results

Five year survival
95 out of 100 women are alive at 5 years with no adjuvant therapy after surgery
An extra 0 out of 100 women treated are alive because of hormone therapy

Ten year survival
87 out of 100 women are alive at 10 years with no adjuvant therapy after surgery
An extra 1 out of 100 women treated are alive because of hormone therapy  

Thanks!  

Dustien

DustieN Dx 2/5/2018, IDC, Left, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 2/23/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy Multi-catheter: Breast
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Feb 11, 2018 07:49AM Georgia1 wrote:

Good morning and I'm sorry you are at this scary phase. Here are some of my thoughts but I am HER-.

Many of the side effects you list are rare and/or are associated with taking an aromotase inhibitor, not Tamoxifen. You will want to discuss the pros and cons of both with your doctor.

Side effects vary a lot from person. I have been on Tamoxifen for six weeks with no side effects at all. You won't know until you start, and you can always stop or switch.

Risk reduction is another issue you want to discuss with your doctor and you might also ask for an Oncotype DX test to be run. Even if your risk of a ten-year recurrence is low, let's say five percent, Tamoxifen can reduce it further, perhaps to three percent. That seemed worth it to me.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/26/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 11, 2018 08:09AM dtad wrote:

Dustien...Hi. Sorry you have to be here but welcome. You are in the scariest part of this. Once you have all the details and a treatment plan in place you will feel better. IMO you cannot make an informed decision about Tamoxifen until you have your MRI and surgery to check your lymph nodes. Hopefully they will be negative. I also don't think you can assess your risk of recurrence until you have these facts. Once you have them you can then go ahead. Good luck and keep us posted. W are all here for you.

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 11, 2018 08:13AM Sjacobs146 wrote:

I had no side effects from Tamoxifen. It's worth trying and if side effects are unbearable, simply stop

Dx 8/26/2014, IDC, Right, 1cm, Stage IIA, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 9/22/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 10/23/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/25/2015 Breast Hormonal Therapy 4/16/2015 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 11, 2018 09:38AM gb2115 wrote:

I have been on tamoxifen for nearly a year and my side effects are also bearable. Truly not awful and I have never once wished the pills away. I honestly don't remember what % survival the tamoxifen adds for me, but watching a close family member go through painful stage 4 recurrence makes it absolutely worth it to me. It comes down to what level of risk you are willing to take, and for me the couple % risk of blood clots, etc are better than the risk of this monster popping up in my bones. I also had one positive node which scares me. However my stage 4 family member had negative nodes many years ago. These cells just sit dormant until they decide to wake up. I'm slated to take tamoxifen for 9 more years. I honestly hope in 9 years they have something else I can take. I would not want to be without cancer prevention.

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Feb 11, 2018 11:27AM EastcoastTS wrote:

I've been on Tamox since May and really have little side effects that I can note (to date). Minor if anything.

So I agree with others. Try it and if you have issues, you can discuss with your MO. There are options. I have osteoporosis and Tamox is better for bones, not worse. Or better than AIs in any case.

I'm with you, gb2115. I want protection. And feel they may have additional options for us at that time (9 years down the road).

Good luck to all!!!

Dx@ 49. Oncotype: 14, BRCA 1/2- Dx 1/4/2017, ILC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/26/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 9/7/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 11, 2018 11:32AM beach2beach wrote:

I've been on tamox since September. I haven't the hot flashes etc. I have had more issues with it drying my nasal passages and sinuses and giving me a fuzzy head. Completely doable if in the long run it may help to prevent recurrence. No issues with it otherwise. Honestly, you don't know until you try.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 11, 2018 11:44AM Spookiesmom wrote:

I was on AI for 4 years, then switched to tamoxifen. Worse se on AI. I’m off everything now, for other reasons.

Remember DrGoogle is NOT your friend. Discuss your concerns with MO. You won’t know until you try it. Any chance of dropping the reoccurrence % is worth it IMO.

Dx IDC, Stage IIIA, Grade 3
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Feb 11, 2018 11:58AM melmcbee wrote:

I guess forgot important info but are they giving tamixifen post menopausal. Chemo put me in menopause and I was told I couldntt take it that I had to take an Ai. Anyway I didnt always remember my arimidex and now I wish I would have paud better attention. It may not have changed anything but I always try to suggest taking the pills the mo suggest. Best of luck. Healing hugs and prayers sent.

Melanie. mentor smooth round high profile gel 700 rt 550 lt with fat grafting 5/30/2013 Dx 6/24/2012, ILC, 2cm, Stage IIIA, Grade 2, 8/15 nodes, ER+/PR+, HER2- Surgery 7/8/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Surgery 8/8/2012 Lymph node removal: Right, Underarm/Axillary Chemotherapy 8/22/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/8/2013 Breast, Lymph nodes Surgery 5/29/2013 Reconstruction (left); Reconstruction (right) Surgery 12/3/2013 Reconstruction (right) Dx 3/29/2017, ILC, Stage IV, metastasized to bone, ER+/PR- Hormonal Therapy Faslodex (fulvestrant)
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Feb 11, 2018 12:07PM Spookiesmom wrote:

Yes, I’m way past menopause had hysterectomy at 35, now 69.

Dx IDC, Stage IIIA, Grade 3
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Feb 11, 2018 01:09PM MelissaDallas wrote:

Always remember that Tamoxifen and AIs are not the same class of drugs and do not have equivalent side effects, especially in premenopausal vs. menopausal women. I see lots of posts here where women are attributing purported potential side effects of aromatase inhibitors with tamoxifen and the drugs are completely different and are not equivalent. Tamoxifen leaves circulating estrogen intact and prevents that estrogen from binding to estrogen receptors in your breasts. Aromatase inhibitors prevent postmenopausal (or women who undergo ovarian suppression) from converting androgens to estrogen. That is a very simplified explanation, but the drugs do indeed work completely differently and have different side effects.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Feb 11, 2018 01:27PM - edited Feb 12, 2018 12:23PM by BarredOwl

Hi DustieN:

Georgia1 (and now also MelissaDallas as I was writing) have made the important point that you have jumbled the side effect profiles of different drugs together (Tamoxifen and Aromatase Inhibitors). The side effect profiles have some commonalities, but can be quite different in other ways. Also, you have not listed some important (if rare) side effects of Tamoxifen.

The question of endocrine therapy (e.g., Tamoxifen, an Aromatase Inhibitor) is within the area of expertise of Medical Oncologists ("MO"). After your surgical pathology is available, you can ask your MO about (a) rare severe adverse effects versus (b) other more common side effects of the specific drug that he recommends for you.

I also agree with dtad, that more information is needed before an informed decision about endocrine therapy can be made. Unfortunately, imaging is not definitive, and the results of the pathology from lumpectomy and sentinel node biopsy may change understanding of your recurrence risk profile and the potential benefits of treatment.

In general, the benefits of endocrine therapy are proportional to recurrence risks and risk of death, such that those at greater risk potentially reap larger benefit. Because of this, in order to make an informed decision about endocrine therapy (e.g., Tamoxifen) requires a case-specific risk/benefit analysis based on information from a Medical Oncologist familiar with your case and risk profile.

This case-specific risk/benefit analysis may include a discussion of:

(a) estimates of your various risks (e.g., risk of death; distant recurrence; local recurrence; new disease in the same or contralateral breast) after all other treatments;

(b) estimates of the potential "absolute benefit" of Tamoxifen in reducing these various risks in your particular case;

(c) information about the various risks of treatment, including the risk of severe adverse effects (in light of your personal medical and family history); and

(d) how the benefit of (b) compares with the risk of (c), in light of one's personal risk tolerance.

For those with a surgery first treatment plan, the information entered into PREDICT should be based on surgical pathology findings, which you do not have yet.

Importantly, Version 2.0 of the PREDICT tool appears to provide information regarding 5-year and 10-year Overall Survival, which is typically a type of mortality assessment (death). Overall survival benefit is important. However, it typically measures whether the study participants are alive or not at a specific time-point, not whether they have remained disease-free or recurrence-free. Those who are alive may be disease-free, or they may be living with metastatic disease, living with a loco-regional recurrence or new disease (i.e., a new primary in the same or contralateral breast). Tamoxifen can potentially reduce the risk of these events. Thus, for patients with invasive breast cancer, consideration is also typically given to the potential benefit of endocrine therapy in reducing the risk of suffering a distant (metastatic) recurrence (which is not provided by PREDICT 2.0).

BarredOwl


[Edits: Minor grammatical changes only (deleted a comma; singular to plural)]

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Feb 11, 2018 02:58PM etnasgrl wrote:

It's pretty easy to find horror stories on the net about Tamoxifen. Women who suffer with all sorts of side effects tend to be vocal about them, looking for help and support. (And rightly so!) 
What you don't really hear about are the women who do quite well on Tamoxifen......and there are a lot of us out there! 
Yes, Tamoxifen comes with a wide array of side effects, however that does NOT mean you will experience all of them or even some of them. I've been on Tamoxifen for 2 years in March. When I first started taking it, I did have night sweats and hot flashes. However, over time, they decreased. And that's pretty much it. 
Please don't dismiss Tamoxifen before you even try it! You may be one of the many women who do well on it.....but you won't know unless you give it a shot. And if you're not, well then you can always stop taking it. No one said you have to continue on it if the side effects decrease your quality of life.
As for how many people have a recurrence after taking Tamoxifen versus those who never took it......to be honest, I really believe cancer, (and the recurrence of cancer) is a total crap shoot. I know of women who took Tamoxifen and the cancer came back. I know of women who refused Tamoxifen and the cancer has not come back. I know of women who are on Tamoxifen with no recurrence. I also know that my mother was one of the women who refused Tamoxifen and is now dead from Metastatic Breast Cancer. So....if there is something out there that has been shown to reduce the risk of recurrence, shouldn't we at least try it?

Diagnosed at 41. Dx 11/5/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/9/2015 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/12/2016 Whole-breast: Breast Hormonal Therapy 2/17/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 11, 2018 03:48PM Peregrinelady wrote:

Well said, etnasgrl. I think it makes a difference if someone has experienced MBC in a loved one. After seeing what my twin sister went through, I will do anything to prevent recurrence. It frustrates me when people read about side effects and won’t even try the meds. I understand when people quit because of painful side effects, but at least see if you are one of the lucky ones who don’t experience them first. I talked to a friend’s m-i-l last night and she hadn’t even heard of foot pain on Arimidex. I switched brands (from Accord to Teva) and the foot pain was excruciating. Now that I have switched back, it is tolerable again.
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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Feb 11, 2018 04:40PM etnasgrl wrote:

Peregrinelady, you are so right!
I'm very sorry about your sister. Hug

Diagnosed at 41. Dx 11/5/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/9/2015 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/12/2016 Whole-breast: Breast Hormonal Therapy 2/17/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 11, 2018 08:06PM Dustien wrote:

Oh my gosh, I never expected such wonderful and over the top explanations of what I should do in this situation.  First off, you are all of you right... I really am jumping the gun on this one and should wait till I have all the facts.  It's just so hard...  I've always been a pro active take the bull by the horns type person and in this case there's nothing I can do but hurry up and wait!  So I turn to the net determined to learn what I can about this invader to my body and find that I have to take pills for 5 years that could give me all sorts of nasty side effects.  And yet, when I hear the list of side effects of any pills I have, in the past, not given them much notice, thinking that "oh, they have to say that but I'm sure it's rare".  And I've not been one to have many side effects at all that weren't manageable in any medications I've taken.  Though yet...in this case, I looked at the worse.  Go figure...

Thank you all for helping bring me back down to earth on this one.  Of course I should wait until I have a more complete diagnosis... after MRI and even after Surgery (be it Breast Conserving or Mastectomy).  And of course I should at least give Tomoxafen a try to see how it affects me.  Of course if the side effects are worse then the cure I can quit then.  It seems I'm just not thinking strait these days.  Tomorrow will be my one week anniversary of hearing the words "The Biopsy Shows You Have Cancer".  That happens to the other guy...not to ME!  NO...ABSOLUTLY NOT! 

My heart goes out to all of you who have diagnoses and procedures listed under your posts that are so much more dire and scarier then mine is at the moment.  It rather makes me ashamed of being so worried.   Thank you for your thoughtful posts trying to set my mind at ease.  I'm happy to have found this forum and all of you, and I give a big SHOUT OUT of gratitude to the Doctor who started it all. Hurrah for her and all the moderators and all of you who work tirelessly to help everyone else.  Hopefully I'll be able to contribute more in the future to help others as I go through this totally unexpected scary journey!

And I promise from here on out to, at least try, to use "Dr.Google" (cute) more wisely from here out and not take all he says as Gospel...

Hugs To All!

DustieN Dx 2/5/2018, IDC, Left, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 2/23/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy Multi-catheter: Breast
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Feb 11, 2018 09:52PM ksusan wrote:

Hey, Dustein, you get to be scared and worried, too! That's not somehow reserved for people with higher stages or more complex circumstances.

You might want to look up all of aspirin's potential side effects, or water, just to put Tamoxifen in perspective :)

All along the way you're going to have choices. If you come to BCO, you'll hear a range of opinions, and you'll get a lot of support. Dr. Google is likely to just frighten you and it's not interactive. Take it a step at a time, and do consider joining the threads where groups of people are doing the same general activity at the same time--you may be getting different surgeries, but everyone in the thread has overlapping questions and useful resources and support for others, for example.


Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Feb 11, 2018 10:52PM Dustien wrote:

Good advice KSusan.  I've a lot to learn about this site... just need time to check out all the threads.  I'm glad I found this site! 

Thanks!

DustieN Dx 2/5/2018, IDC, Left, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 2/23/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy Multi-catheter: Breast
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Feb 12, 2018 12:09AM Michelle_in_cornland wrote:

I have taken Tamoxifen, which I lovingly call, "Tamox o fun," for over a year. I really am doing great and am thankful for the medication to reduce recurrence.

Live free - Oncotype 14, Take things as they come and you can do it!!! Dx 8/8/2016, IDC, Right, 2cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 8/29/2016 Radiation Therapy 10/6/2016 Whole-breast: Breast Hormonal Therapy 2/15/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Feb 12, 2018 01:17AM Dustien wrote:

That's so good to hear Michelle.  Hope it works as well for me.

I am on the Silver plan of the Affordable Care Act.  Does anyone know how much monthly Tamoxifen is going to cost?  Thanks!

DustieN Dx 2/5/2018, IDC, Left, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 2/23/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy Multi-catheter: Breast
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Feb 12, 2018 09:49AM gb2115 wrote:

Not sure, but tamoxifen is a widely used generically available drug so it should be on the lowest tier of your plan if you have a tiered drug plan. If it's not, I do believe it's on the lower cost formularies at some of the retailers (I think I saw it as $9 on the Target formulary). I have a Cigna commercial plan (via employer) and my tamoxifen is actually free. It's considered preventative. That's pretty smart for them to do that. It costs them a lot less to pay for my tamoxifen than to pay for a stage 4 recurrence...


Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Feb 12, 2018 11:17AM MelissaDallas wrote:

Always check the cash (non-insurance) price of a generic. Sometimes it is cheaper than going through your insurance.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Feb 12, 2018 01:02PM Michelle_in_cornland wrote:

Dust, what silver plan do you have? I have found most generic meds are free on gold and silver through BCBS.

Live free - Oncotype 14, Take things as they come and you can do it!!! Dx 8/8/2016, IDC, Right, 2cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 8/29/2016 Radiation Therapy 10/6/2016 Whole-breast: Breast Hormonal Therapy 2/15/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Feb 13, 2018 12:12AM - edited Feb 13, 2018 12:13AM by Dustien

Michele, I am on the BCBS Silver Plan.  I've a few drugs that went up when I started on this plan so was wondering about Tamoxifen.  I hope you are all correct and that it will be affordable.  I'll be sure to check the cash generic price too.  Good advice all!  Thanks!

DustieN Dx 2/5/2018, IDC, Left, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 2/23/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy Multi-catheter: Breast
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Feb 13, 2018 01:41AM Michelle_in_cornland wrote:

I am on the gold plan with bcbs and Tamoxifen is free. Yours will be either free or very cheap.

Live free - Oncotype 14, Take things as they come and you can do it!!! Dx 8/8/2016, IDC, Right, 2cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 8/29/2016 Radiation Therapy 10/6/2016 Whole-breast: Breast Hormonal Therapy 2/15/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Feb 13, 2018 02:00AM Dustien wrote:

Thanks Michelle...that is very good to hear!


DustieN Dx 2/5/2018, IDC, Left, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 2/23/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy Multi-catheter: Breast
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Feb 13, 2018 08:20AM edwards750 wrote:

I have BC/BS and it cost $4.00. Can’t beat that.

Diane

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Feb 13, 2018 09:18AM pupmom wrote:

We have BC/BS Kansas, highest level plan, and Tamoxifen is free.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-
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Feb 13, 2018 11:16AM claireinaz wrote:

I was on Tamox for a year and had no problems. Remember that most who post about any kind of anti-hormonal on this website and others will be looking for confirmation of negative side effects because they are worried. Those who do fine on the drug (the majority) won't be having problems, and won't be looking for relief or answers.

Careful with Dr. Google, too. He is oftentimes an alarmist with no real research experience :)

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Feb 14, 2018 02:34AM Dustien wrote:

You're all so right.  I'm not so worried about Tamox now

.  

DustieN Dx 2/5/2018, IDC, Left, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 2/23/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy Multi-catheter: Breast
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Feb 14, 2018 08:20AM NotVeryBrave wrote:

Dustie - It's completely normal to be "not thinking straight" at this point in time. Anxiety paired with a vast amount of info can do that to you. I think it's human nature to try to be prepared.

There's also a difference between someone being given a pain med for an injury or an antibiotic for an infection vs one of these drugs. People tend to not be concerned about something that they will only take for a few days. When you're told that you'll be on this for 5-10 years - well, that's a different story.

I tried Tamoxifen for 3 months and quit due to intolerable SE's. I worry about not being on something. It's possible that some of the problems I was having could be related to my other treatments (chemo or Herceptin) or recovery from them. I hope to try it again, perhaps at a lower dose.

I would always recommend that anyone at least try to take the medications being prescribed for them. It really is a matter of determining the actual benefit to you.


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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