Topic: Pros and Cons of Tamoxifen

Forum: "Middle Age" 40-60(ish) Years Old With Breast Cancer — Meet others in this age-range who share similar life issues.

Posted on: Dec 28, 2017 11:51PM

Posted on: Dec 28, 2017 11:51PM

llwilson wrote:

I have read and read and read and would love to get someone's opinion on not taking to TAmoxifen. I'm 56, ER+, but my OncaType is 9 and I have just finished my radiation and feel great! I was low risk to begin with and the cancer was very contained. The side effects of Tamoxifen are absolutely terrifying for me. After finally surviving, being happy again, why would I torture my body to lower the risk of reoccurrence. I read someone say they'd rather lose their breasts than their hair. I feel like I finally have my life again, I can start getting the weight off and hiking again. All the possible side effects sounds like it will make life much worse. Looking for someone that is similar age group.

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Dec 29, 2017 12:26AM pupmom wrote:

Your Oncotype Score is based on the assumption that you will use Tamoxifen or an Al for 5 years. If you don't do that your odds of recurrence go up. I have been on Tamoxifen and Aromasin for six years, with no serious SEs. But it is obviously your life and your choice.

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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Dec 29, 2017 12:48AM buttonsmachine wrote:

Hi llwilson, we are in different situations diagnosis-wise, but I struggled with tamoxifen at first for many of the same reasons you mention. I can't say what I would do in your situation, and everyone has to make their own decision that is "right" for them.

I am 34 and have a high oncotype so I did opt to take tamoxifen. I almost quit taking it a couple of times, but my surgeon and my oncology NP encouraged me to stick with it. They said the side effects might resolve as my body adjusts to the medicine. In my case, they were right: after a couple months of an adjustment period, I didn't really have any side effects from it at all. You might try the tamoxifen and see how you feel - maybe you won't have any problems, and you'll be able to reduce the risk of recurrence! Either way, best of luck to you on your decision.

Diagnosed at 32. Local recurrences one year later, probably due to needle seeding at inital biopsy. Now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 10/1/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 11/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/1/2017 Whole breast Hormonal Therapy 4/1/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lymph node removal; Mastectomy: Right Chemotherapy 12/1/2017 AC Surgery 4/1/2018 Lymph node removal; Mastectomy: Right Radiation Therapy 5/1/2018 External: Lymph nodes, Chest wall Chemotherapy 7/1/2018 Xeloda (capecitabine) Hormonal Therapy 7/30/2018 Zoladex (goserelin) Hormonal Therapy 2/1/2019 Aromasin (exemestane) Hormonal Therapy 9/30/2019 Faslodex (fulvestrant) Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2- Targeted Therapy 8/30/2020 Ibrance (palbociclib) Dx 1/2021, IDC, Stage IV, metastasized to liver/lungs Chemotherapy 1/15/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Dec 29, 2017 02:51AM - edited Dec 29, 2017 04:29AM by BarredOwl

Those with hormone receptor-positive, HER2-negative invasive breast cancer may receive the OncotypeDX test for invasive breast cancer.

All those receiving this particular test should be certain to obtain a complete copy of their original Oncotype test report for their review and records (not some partial information copied into a patient portal with risk of error). They should confirm their name on the report, the proper lymph node status, and all other material information.

The OncotypeDX test for invasive disease and the report content is designed for use in certain hormone-receptor positive, HER2-negative patients whose distant recurrence risk warrants a recommendation for 5-years of initial endocrine therapy under clinical consensus guidelines, and in whom chemotherapy would normally be considered or recommended based on clinical and pathologic criteria alone under clinical consensus guidelines. The results can further inform decisions about whether or not to add chemotherapy to endocrine therapy.

A patient may still elect to decline endocrine therapy, if they do not feel that the absolute benefits outweigh the risks in their particular case (based on a personalized risk/benefit analysis). However, it is important to understand that the reports do not include any estimate of risk without endocrine therapy.

The risk information in the reports is based on clinical trials in which all of the patients were assigned to 5-years of Tamoxifen (either 5 yrs of Tamoxifen Alone or 5 yrs of Tamoxifen plus Chemotherapy). Thus, the test is said to assume receipt of endocrine therapy as noted by pupmom.

If no endocrine therapy is received, a person's risk would be much higher than indicated in their report.

Your Medical Oncologist can provide an estimate of your risk with no endocrine therapy. The difference between your risk with endocrine therapy (after all other treatments) and your risk with no further treatment corresponds to the "absolute benefit" of therapy your case, which in turn should be weighed against the risks of side effects of treatment, in light of your personal risk tolerance.

The first graph in the node-negative report provides information about the average 10-year distant (metastatic) recurrence risk that is associated with your Recurrence Score (with Tamoxifen Alone). However, there are additional risks that are not included in this value, such as the additional risk of same in-breast recurrent or new disease, and the additional risk of new disease in the contralateral (opposite) breast. Endocrine therapy can reduce these risks as well, providing additional potential benefits. Therefore, you may also wish to request personalized estimates of these additional risks as well (a) with endocrine therapy; or (b) without endocrine therapy to better understand your overall risk/benefit profile from treatment.

Node-negative Report Content - Nature of Risk Information Provided with Endocrine Therapy (Tam) Alone

If a person has node-negative disease, then they would receive a node-negative Oncotype report.

The report title at the top of page 1 should indicate that it is a "Node Negative" report if you are node-negative:

Here is a screen shot of the first graph from the current node-negative sample report on-line (found here). It illustrates the results for person with a Recurrence Score of 10, which is associated with a 10-year Risk of Distant Recurrence of 7% (95% CI: 4% - 9%) with Tam Alone (see graph and printed risk information to the left of the graph):

Reading off the graph of this node-negative report, a Recurrence Score of 9 would be associated with a 10-year Risk of Distant Recurrence of around 6% with Tam Alone (i.e, WITH Tamoxifen treatment). Please check the actual content of your report for the precise numbers printed to the left of the first graph.

The first graph showing the relationship between 10-year distant recurrence risk and Recurrence Score comes from Figure 4 of Paik (2004), a study of patients who were all assigned to receive 5-years of Tamoxifen. Therefore, the 10-year distant recurrence risk without any endocrine therapy would be higher than indicated next to the first graph of your report.

If no endocrine therapy is received, a person's risk would be much higher than indicated in the report. Please obtain an estimate of your risk(s) without endocrine therapy from your medical oncologist.

Tamoxifen or an Aromatase Inhibitor:

Although the reports for the Oncotype test for invasive disease currently feature "validation" studies in which Tamoxifen was used, this reflects historical and practical considerations of clinical trial design. In current clinical practice, the use of Oncotype Recurrence Score information does NOT restrict choice of endocrine therapy. Thus, patients receiving the Oncotype test for invasive disease should receive a case-specific recommendation for endocrine therapy that is appropriate to their particular situation (e.g., Tamoxifen, an Aromatase Inhibitor).

For example, here is a later Oncotype validation study conducted in patients who had received 5-years of the aromatase inhibitor Anastrozole. This study used samples and 9-yr recurrence rates from the tamoxifen arm and the anastrozole arms of the ATAC trial, in node-negative and node-positive postmenopausal women with localized breast cancer.

>> "Prediction of Risk of Distant Recurrence Using the 21-Gene Recurrence Score in Node-Negative and Node-Positive Postmenopausal Patients With Breast Cancer Treated With Anastrozole or Tamoxifen: A TransATAC Study"

>> Dowsett (2010):

In addition, the prospective TAILORx trial, in node-negative (N0), hormone receptor-positive, HER2-negative disease, permits a variety of endocrine therapies. The 5-year results for those with Recurrence Scores of 0 to 10 assigned to receive endocrine therapy alone were reported here:

>> "Prospective Validation of a 21-Gene Expression Assay in Breast Cancer"

>> Sparano (2015):

>>QUOTE: "In the low-risk cohort of 1626 patients, endocrine therapy included an aromatase inhibitor in 963 patients (59%), tamoxifen in 560 (34%), sequential tamoxifen followed by aromatase-inhibitor therapy in 13 (1%), ovarian-function suppression in 44 (3%), or other or unknown therapy in 46 (3%)."

Thus, if post-menopausal (as defined in the NCCN guidelines for breast cancer), then another point of discussion would be the option of an Aromatase Inhibitor ("AI"), which may provide some advantage over Tamoxifen, particularly for those with Invasive Lobular Carcinoma ("ILC") (see e.g., Filho (2015).

The AIs (Letrozole (FEMARA); Anastrozole (ARIMIDEX); or Exemestane (AROMASIN)) have different drug-drug interaction profiles from Tamoxifen, and different side effect profiles from Tamoxifen. Such differences can affect recommendations. You can request information about side effects and their incidence, and whether you may be at increased risk of certain side effects in view of your personal medical history (e.g., co-morbidities) or family medical history.

Given the above, any post-menopausal woman who receives a recommendation for Tamoxifen should request a reasoned explanation of why Tamoxifen is preferable to an Aromatase Inhibitor in her particular case (and seek a second opinion if it is suggested that reliance upon the oncotype test restricts her choices.)

I am a layperson with no medical training, so please confirm all information above with your Medical Oncologist to ensure receipt of current, case-specific expert professional medical advice.



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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Dec 29, 2017 05:16AM Faithonfire wrote:

dear Barred,

Thank you SO much for posting that in time for me to use for my final review process! I just finished up my chemotherapy dec 4 and was on tamoxifen and armidex but chemo brain is still preventing me from making sense of all the files I grab for the master report.

I will be sure to mention the amended risks of recurring after my double mastectomy and potential lymph removal is 5 or less projected from palatable mass reduction so massive it might be just pins they find so I am a gift waiting to be unwrapped at the moment! I thought it was an adorable way to describe it but you can RETURN a gift! This is a complete leap of faith for me and I had my mother by my side with the same team of doctors that cured her 3 years ago!

I was the confirmation case my family needed to prove braca 2 with my stage 3a invasive ductal carcinoma in left side lymph system largest tumor was 5.0 in my armpit behind muscle making it easy to mistake for joint pain, and hard to find on traditional mammograms so my calcifications were tested and benign several times as I was dismissed for my concern about my nipples and the fact that I had to bind off and not breastfeeding my last child made my case progress so significantly because the advice I was given by my ob gyn doctors was based on incorrect outdated industry standard of care still defended by doctors fearing accountability as a whole for delaying those updates for profit!

If the Medicaid insurance would have covered the genetic test for braca2 gene when she was being treated 3 years ago I might have had a chance to catch it sooner than stage 3!!! They didn't KNOW so I can't be upset I was told to my disgust.

Funny how "I didn't know it was WRONG" was NEVER an acceptable legal defense in ANY OTHER profession containing the lives and futures of those put at their mercy during daily business as usual attitude of healthcare treatment in action.

I made it easier for them to understand by making SURE my ENTIRE bloodline can now get tested as soon as they all wish FREE now.

I have several confirmed cases of my age range thanking me for the opportunity to help ourselves and our children properly understand our risks in the future as WE see fit with the information provided by OUR medical reports instead of waiting to be harvested of the same late stage diagnosis for failing to understand it long after all hope of positive futures is lost on profit!

I cannot deny how successful my treatments have been with full palatable mass reductions! or that all the fantastic people working with us care about us like family and we are all learning together through MY journey how to make it easier and one day unnessicary for other patients!

My first 4 treatments were very heavy with armidex plus a nuclear push every 2 weeks, then dropped down to just tamoxifen infusion weekly. My side effects were SO severe that I considered stopping treatment several times, and that was after the switch so I would have rather done more of the severe treatment for less time if I had a choice on how they hold the chemical bat they beat me with!

My blood numbers looked so good they all told me it didn't look like I was on active chemo the whole time but I felt worse than I ever have in my life from the side effects mostly. I finally got in to palliative care for pain management on an appropriate level 2 treatments from being finished!! I had to fight a LOT of moral indignation on EVERY level of care before my pain was properly addressed in my weakest position and if it wasn't for my great therapist I never would have achieved success on SO many levels of this problem.

I have posted a few other places in more detail about that but it was a true patient victory I just had to share!

My advice to ANYONE going near that drug to have professional pain management in place before consenting to tamoxifen treatment of ANY kind.

Oh, one more personal experience they can't admit as medical fact yet I found to help EVERYONE that took the nulasta shot the day after treatments with a very unique crushing bone pain side effect, I took one Claritin allergy pill (12-24 hr NOT extended release tablets ) the day before neulasta injection and one the day of injection after dose is delivered completely eliminated the side effect and made pain medication unnessicary for me! I just wish I heard the rumor before my last 2 treatments with it!

I will check back in and let you know what my actual numbers and margins were after surgery after I am sure to get my hands on full hard copies of my test results AND films! You paid for your pics and should get to keep a copy! They come in handy decades later in my case, when I showed my old films to my docs their chins all hit the floor because I HAD them when they were not transferred with my master file! How do you loose digital pics in a medical report when I have films they can't touch of same info missing?

EXactly, its more the healthcare industry that needs a tighter leash because decisions can only be made on information available to doctors AND patients! For what it costs we should NOT have to do their jobs for them too

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement
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Dec 29, 2017 08:25AM peregrinelady wrote:

Faith, just so we do not confuse anyone, I think you are talking about different drugs when you say infusions. Correct me if I am wrong, but Arimidex and Tamoxifen are only prescribed as pills (or liquid in the case of Soltamox). Perhaps you are talking about Taxol and Abraxane?
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/18/2015 Mastectomy; Mastectomy (Left) Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/19/2016 Mastectomy; Mastectomy (Right); Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap Hormonal Therapy 8/1/2016 Arimidex (anastrozole) Hormonal Therapy 7/20/2020 Femara (letrozole) Hormonal Therapy 3/4/2021 Arimidex (anastrozole)
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Dec 29, 2017 09:32AM Georgia1 wrote:

Hi llwilson. My risk of recurrence was 11 on Oncotype DX, but as others have pointed out that is if you take Tamoxifen for five years. If you don't take it your risk roughly doubles.

I'm going to start on January 1 and see how it goes. Many have advised me that if you take the pill before bedtime, instead of in the morning, side effects are greatly reduced.

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 11/27/2017 Whole breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 29, 2017 02:33PM Faithonfire wrote:

hi perigrinelady

I might have confused the pre and post surgery treatment drugs names but I have had both armadol and tamoxifen in bi weekly 4 dense dose treatments with nuclear push, a huge canister injected by nurse over around 15 min in addition to infusion bags about 2 to 4 hrs, and nulasta shot set the day after. Weekly infusions of just tamoxifen were much worse for side effects but faster, 2hrs most times all given through a power port installed in the right upper chest because veins in arms could not withstand damage of total medication required in treatments.

I was a very aggressive case that found additional cancer on my right breast in the open chest MRI that my first MRI missed because I was flat on my back! The machine that found it was not available in my state where I was diagnosed.

it was a race from official diagnosis to get me registered with my mothers team of doctors, admitted ported and started on chemo this July as soon as I could complete diagnostics.

It's been s blur and completely overtook my world but my mom just went through this 3 years ago and took me through this the way only a mother can with unconditional love!

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement
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Dec 29, 2017 02:43PM carmstr835 wrote:

I am opting not to take hormone therapy. I am afraid of the cognitive decline. Of course my MO is not too impressed, but he doesnt listen to what I say anyways. It is my body and if I get to stage 4, then I will, but if not, I am taking my chances with my fasting diet every 3 weeks and low carbs.

Hormonal Therapy 3/22/2017 Arimidex (anastrozole) Surgery 3/27/2017 Lymph node removal; Lymph node removal (Right): Sentinel, Underarm/Axillary; Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap Chemotherapy 5/17/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 6/27/2017 Perjeta (pertuzumab) Targeted Therapy 6/27/2017 Herceptin (trastuzumab) Chemotherapy 6/27/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 9/11/2017 Breast, Lymph nodes, Chest wall Surgery 7/10/2018 Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap Surgery 10/16/2018 Reconstruction (Left): Fat grafting; Reconstruction (Right): Fat grafting Surgery 9/18/2019 Reconstruction (Left): Fat grafting; Reconstruction (Right): Fat grafting Surgery 3/8/2022 Dx IDC, Both breasts, 1cm, Stage IIB, Grade 2, 2/17 nodes, ER+/PR-, HER2+, ISH, IHC Dx IDC, Other, 1cm, Stage IV, Grade 2, 2/17 nodes Targeted Therapy Nerlynx Surgery
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Dec 29, 2017 03:06PM Faithonfire wrote:

hi ladies, I will fill in a few more details before I try to sleep again but having a hard time with that these days.

I am being treated much more proactive than my mother was because my cancer hit the lymph system on my left side and I confirmed the braca 2 gene with unidentified mutation is identical to the rest of my family that can NOW get tested for FREE whenever they are ready to know.

My mom had a lumpectomy and radiation and is now still cancer free on tamoxafin pills for a few more years. Now that braca 2 is confirmed they are all too eager to take ovaries out despite the fact that they are currently completely healthy in both of us. We are both done having kids so that's the industry standard reccomendatuon we were just given.

I am having a skin saving nipple saving double mastectomy and tumors and port removed in my first surgery when the spacers are put in they will bank nipples in pouch above c section and if tissue remains viable they will reattach after implants replace spacers in 2nd surgery a few months later based on how I heal.

I won't know my tumor sizes or margins until surgery is over on January 9 but if I have 98% clearance or better radiation won't be needed for me. It boils down to not worth the risk to my new implant for outdated radiation doses being the industry standard of care applied to all patients and should be more tailored to individual risk vs proven results based on updated treatment statistics. I saw the look in his eye trying to justify his treatments as I listened so WE both know what is not worth the risk vs the promise of benifit in question these days.

When we know better we DO better! That is why updating information treatment standards are based on actual current cases to treat the entire patient rather than the standard jigsaw pieces they know how to keep coming back for more

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement
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Dec 29, 2017 04:09PM coraleliz wrote:

IIwilson- I completed 5 years of Tamoxifen. I did have side effects. You mentioned hiking. I was able to continue hiking on the medication. I was able to continue running for about 3years on it. Can't really say that the Tamoxifen was the culprit there or just my knee & ankle getting older. You may very well have fewer side effects than I did. My list is quite long. Yes, I feel better now that I stopped the drug. You might just want to give it a try & stop if it gets too much. My oncotype was 4, but I had positive nodes.

Dx 2/28/2011, IDC, Right, 1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2- Dx 3/15/2011, IDC, Left, 1cm, Stage IIA, Grade 1, 2/4 nodes, ER+/PR+, HER2- Surgery 4/15/2011 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right

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