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All TopicsForum: DCIS plus HER2-positive Microinvasion → Topic: Anyone had reoccurance aftering opting out of taking tamoxofin?

Topic: Anyone had reoccurance aftering opting out of taking tamoxofin?

Forum: DCIS plus HER2-positive Microinvasion —

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Posted on: Dec 1, 2015 10:45AM

YoungSurvivor101787 wrote:

I was diagnosed April 2015 at age 27 after having an excisional biop, from mammogram and ultrasound doctors were confident it was a benign fibroadneoma, turns out it was not. I had ~2.5cm DCIS tumor and <1.0mm invasive tumors scattered throughout, Stage 1. I had a unilateral mastectomy June 2015. Due to the the small nature of my invasive component and the fortunate event that it has not spread to my lymph nodes I was told Chemo was not suggested nor radiation. My ONC did really recommend tamoxofin. I have not started taking it, and I really don't want to. My doctors have strongly suggested that my long use of birth control was the contributing factor to my cancer, due to having a higher hormonal receptive cancer. I am never allowed to take it again and that is fine by me.

I am looking to see if anyone out there has a similar situation( or knows anyone) and decided not to take the tamoxofin and had a re-occurrence in the other breast or anywhere else. I am very stuck on what to do, my ONC gave me all the stats and there is just such a small % that it will help me, lowers my chances of re-occurrence <4%, which is still 4% but as what compromise to my quality of life. I am so young and to take tamx for 5-10 years and then stop......I am terrified of what this will do to my body. I feel like the tamx will just suppress the cancer and once I stop taking it I am going to be at risk for occurrence again.

Anyone out there know what I am feeling and talking about?

Thank you!

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Dec 1, 2015 02:11PM april485 wrote:

Hi youngsurvivor. Unfortunately, I don't know the stats but I do know that due to your young age at diagnosis, doctors would not likely want you to opt out of tamoxifen since it is the only thing you will be doing to prevent recurrence. Despite what you might have read/heard, many women do very well on this drug and have minimal to no side effects. If I were you, I would at the very least consider trying the drug for a little while before deciding to not take it. Since you are so young, I know your doctors would hope that you can keep cancer from coming back for the rest of your life and tamoxifen is a very big reason so many women (and some men) stay cancer free. Whatever you decide, I wish you great health in the future but if I were you, I would most definitely try it for a few months. You could always opt out if you have problems!

"Fear has been a huge dictator in my life - so I am trying to stage a coup!" ~ a friend Dx 1/30/2013, DCIS, <1cm, Stage 0, Grade 2, ER+/PR+ Surgery 2/20/2013 Lumpectomy: Left Surgery 3/10/2013 Lumpectomy: Left Radiation Therapy 4/21/2013 3DCRT: Breast Hormonal Therapy 6/19/2013 Aromasin (exemestane) Hormonal Therapy 1/1/2016 Femara (letrozole)
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Dec 2, 2015 01:10AM Unbreakable01 wrote:

I was diagnosed with stage 2 invasive mucinous. No chemo or rads for me, and I was 34, so slightly older. I started tamoxifen 3 months ago and was worried about the side effects. The side effect for me was insomnia, but I also had stress at work. The stress is gone and I'm able to sleep. Everybody is different so I'd say try it. Everything is a gamble with cancer, it's what risk are you willing to take?

I want to minimize my risk of recurrence.

Dx 5/11/2015, IDC: Mucinous, Right, 2cm, Stage IIA, 0/2 nodes, ER+/PR+, HER2- Surgery 7/29/2015 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Surgery 1/11/2016 Reconstruction (right): Silicone implant Surgery 8/15/2016 Lumpectomy: Right Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 2, 2015 10:38AM Annette47 wrote:

I really haven’t had any problems with it, and like April, would suggest at least giving it a try. Anecdotally, according to my oncologist, it seems as if people who are further from menopause tend to have fewer issues with the drug than those who are perimenopausal when they start on it, so hopefully that would hold true for you.

Dx 11/20/2012, DCIS, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+ Dx 11/20/2012, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Surgery 12/17/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/20/2013 Breast Hormonal Therapy 3/31/2013
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Dec 2, 2015 10:54AM CCCDDD wrote:

First, I'm so sorry you are dealing with this. I was 34 and also took birth control pills from the time I was 16 on. Er+, Pr+ too. Also Her2+. I took 5 months of tamoxifen and then stopped. Bone pain was horrible for me. I have friend who have taken it without any side effects though...I also wanted to try getting pregnant. I promised my onc that i would "consider tamoxifen again" after a successful pregnancy. I never did. I DID have two healthy children and nursed them both on the "good side" 8 years later, I had a recurrence. Her2 - this time but definitely all about the hormones. I had a bilateral and am going on aromatase inhibitors this week. Not sure which one I will get. Not tamoxifen. The breast surgeon said that my type of cancer usually returns in 8-12 years anyway...so not sure if tamoxifen would have put it off at all. Any questions, you can PM me. Good luck!!

Dx 8/5/2015, IDC, Right, 1cm, 1/15 nodes, ER+/PR+, HER2- Surgery 9/21/2015 Lymph node removal: Sentinel; Reconstruction (left): Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement
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Dec 2, 2015 12:05PM 3-16-2011 wrote:

Hi youngsurvivor

I am so sorry you are going through this. I was initially dx at age 48 and because I was under 50, I was tested for brca gene. I am brca2 posotive. This ment an agressive tx. I took tomoxiphan for 18 months, then stopped due to SE. Now I am stage 4. I dont know if taking tomoxiphan longer would have changed anything. I have no regrets. We all have to make tough decisions. I am gladd I tried the tomoxiphan for as long as I could.

peace

Mary

3-16-2011 Dx 3/16/2011, IDC, 2cm, Stage IIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Chemotherapy 5/3/2011 AC + T (Taxol) Surgery 10/18/2011 Prophylactic ovary removal Radiation Therapy 11/10/2011 Surgery 10/10/2012 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Dx 11/5/2014, Stage IV, ER+/PR+ Hormonal Therapy 1/1/2015 Aromasin (exemestane)
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Dec 5, 2015 05:01PM Noni wrote:

I was dx with DCIS in Dec 2007. I had a bilateral mastectomy and no further treatment. My docs did not feel hormones were necessary as I opted to remove both breasts, and there was no spreading to lymph nodes.

Here it is 8 years later and after no follow up treatment I now find myself stage 4 with mets to lung and bone. I will be getting scans tomorrow to see if there's anything in my brain.

Had I to do it over again I for sure would have done things differently. In your shoes, I would take the tamoxifen.

Noni

Noni, 50 year old mother of an 11 year old brainy girl. Taking a break from BCO for a while. Now on hospice. Dx 12/5/2007, DCIS, <1cm, Stage 0, Grade 3, 0/6 nodes Dx 11/13/2015, IDC, Both breasts, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 12/11/2015 Taxol (paclitaxel) Hormonal Therapy 3/31/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/6/2016 External: Bone Chemotherapy 12/5/2016 Doxil (doxorubicin) Chemotherapy 3/1/2017 Adriamycin (doxorubicin)
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Dec 5, 2015 06:18PM 3-16-2011 wrote:

Noni

So sorry for your news. Cone check out stage iv threads including bone mets and live continues after stage Iv lots of hope and wisdom there

3-16-2011 Dx 3/16/2011, IDC, 2cm, Stage IIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Chemotherapy 5/3/2011 AC + T (Taxol) Surgery 10/18/2011 Prophylactic ovary removal Radiation Therapy 11/10/2011 Surgery 10/10/2012 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Dx 11/5/2014, Stage IV, ER+/PR+ Hormonal Therapy 1/1/2015 Aromasin (exemestane)
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Dec 8, 2015 02:15PM april485 wrote:

(((Noni))) Hugs and prayers for you. So unfair!!! I hate BC!

"Fear has been a huge dictator in my life - so I am trying to stage a coup!" ~ a friend Dx 1/30/2013, DCIS, <1cm, Stage 0, Grade 2, ER+/PR+ Surgery 2/20/2013 Lumpectomy: Left Surgery 3/10/2013 Lumpectomy: Left Radiation Therapy 4/21/2013 3DCRT: Breast Hormonal Therapy 6/19/2013 Aromasin (exemestane) Hormonal Therapy 1/1/2016 Femara (letrozole)
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Dec 17, 2015 08:16AM edwards750 wrote:

I am 4 1/2 years out with Stage 1a IDC Grade 1. I had a lumpectomy and 33 RADS treatments. I started out taking Arimidex and then ONC switched me to Tamoxifen. No SEs early on but now have recurring joint pain and some insomnia. I'm not going to stop taking it regardless. I know some women have debilitating SEs from the drug so they may have a different decision. Thing is I want to do everything possible to prevent a recurrence just like everyone else. I'm not willing to play Russian roulette with my life but that's me.

You don't want to second guess yourself or look back and say what if so be sure of your decision. It's your body and your life.

Diane

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Dec 31, 2015 05:27PM - edited Dec 31, 2015 05:28PM by Mommyathome

noni,

That is frightening! That is what keeps us always worried about a recurrence! Cancer sucks!!!

Can I ask you a question? Were you pre or post menopausal?

I had a bmx for a Dcis diagnosis in January 2014 and a total hystertomy removing Fallopian tubes overies etc.

I took away as much estrogen and progesterone possible. I know this doesn't guarantee against a recurrence either.

We're u going to bs every 6 months?

I was told I didn't need tamoxifen or radiation or anything else because I had the bmx. Now I question it..

Surgery 11/19/2013 Lumpectomy: Left Dx 11/20/2013 Dx 12/4/2013, LCIS Dx 12/4/2013, DCIS, 1cm, Stage 0, Grade 2, ER+/PR+ Surgery 1/28/2014 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/1/2014 Reconstruction (left); Reconstruction (right) Surgery 6/30/2014 Prophylactic ovary removal Surgery 3/22/2015 Reconstruction (left)
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Dec 31, 2015 07:18PM - edited Dec 31, 2015 07:19PM by StillKicking

I had DCIS with micro invasion in 2007. Double mast followed by chemo and about 4 1/2 years of Arimidex. I had lots of side effect, especially joint pain in first 6 months. While it did level off you're definitely not at 100% while taking it. So I threw everything at it, except for about 6 months of Arimidex, to make sure it didn't come back.

Now I have been diagnosed with multiple myeloma, blood cancer, treatable but not curable.

This cancer is a crap shoot. Make the best decision that you can and live your life.

Diagnosed Smoldering Multiple Myeloma (Blood Cancer) 07/2015 Surgery 8/8/2007 Mastectomy: Left, Right Dx DCIS/IDC, Right, 1cm, Stage IA, ER+, HER2+ (FISH) Chemotherapy TAC Hormonal Therapy Arimidex (anastrozole)
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Dec 31, 2015 07:31PM Nancy2581 wrote:

I just wanted to let you know that I have been taking tamoxifen for almost a year now. No side effects except for a few hot flashes. I would at least give it a try and see how you do that way you'll know you did everything you could have to prevent a reoccurrence. I also agree with April485 about your young age being a factor.

Nancy

2.8 cm tumor with LVI Dx 6/11/2014, IDC, Right, 2cm, Stage IIB, Grade 1, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery 6/24/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 7/21/2014 AC + T (Taxol) Hormonal Therapy 1/27/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 1/29/2015 Whole-breast: Breast, Lymph nodes Hormonal Therapy 12/17/2017 Femara (letrozole)
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Jan 9, 2016 04:14PM bluepearl wrote:

Young survivor needs to know that getting cancer at such a young age may indicate a genetic component as well and may put her at risk for ovarian cancer. That said, the younger you are the more years you do have in getting breast cancer but if you had the bilateral mastectomies, that chance goes down significantly but not to 100%. The Her2+ also means that tumor had an aggressive component to it, even if it was very small. Over all, the other breast is at risk in a unilateral...note my stats.....and the tamoxifen would definitely help greatly in keeping anything from happening in that breast. I feel that if I had taken the tamoxifen for my first cancer, the second would not have occurred or would have been even tinier. Cancer cells that are ER/PR + die when they are stopped from getting those hormones. Yes, it can come back down the road...so can a bus at the wrong time. Do whatever you can then you will always know you did everything you could. The rest must be left to fate.

Dx 1/6/2011, IDC, 1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 2/12/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Dx 2/2013, IDC, <1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 3/10/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 3/18/2013
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Feb 23, 2016 07:03PM leenso52 wrote:

Young survivor101787; I'm not seeing any feedback from you on what you decided to do and how you are. I'm hoping you decided to get on Tamoxifen, especially after reading the testimonials from women above. Shocking, not to mention very scary to me. I am 64 now but after radiation for dcis last yr I opted not to take the hormones for my ER+ status. I too wasn't convinced by "statistics" that the benefit was worth the possible S.E. profile. But you are SO MUCH younger! It would never have been an option really, not to take it.. I see my M.O. next month and we'll revisit the topic of taking the anti estrogen drugs. Especially after reading the stories. I am so very sorry to all who had those horrible recurrences. I am an oncology RN and I take care of many women with late stage bc and many I knew when they were originally treated. This disease really sucks!

LOVE IS ALL YOU NEED Dx 11/2014, DCIS, Right, Stage 0, Grade 3, 0/0 nodes, ER+/PR-, HER2- Surgery 12/4/2014 Lumpectomy: Right Radiation Therapy 1/13/2015
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Sep 1, 2016 11:40PM gammaw55 wrote:

So sorry Noni, HUGZ. Did you continue to see your doctor and have recommended tests done or go for tx when u had a problem.

61 when dx with DCIS Rt. Stage 0 Grade 1-2 ER + 80%. Dx 6/24/2016, DCIS, Right, Stage 0, Grade 2, 0/3 nodes, ER+ Dx 6/24/2016, DCIS, Right, Stage 0, Grade 2, 0/3 nodes, ER+/PR-, HER2- Surgery 7/27/2016 Mastectomy: Right; Prophylactic mastectomy: Left
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May 31, 2018 02:21PM sunshine1007 wrote:

How are you now? I also opted out of taking the Tamoxifen and hoping it was the right decision. Also had BMX and rads with DCIS micro invasive. Doc seems to think I dont have anything to worry about and I dont really need to take it for the small benefit.

Feb 24, 2016 02:03AM leenso52 wrote:

Young survivor101787; I'm not seeing any feedback from you on what you decided to do and how you are. I'm hoping you decided to get on Tamoxifen, especially after reading the testimonials from women above. Shocking, not to mention very scary to me. I am 64 now but after radiation for dcis last yr I opted not to take the hormones for my ER+ status. I too wasn't convinced by "statistics" that the benefit was worth the possible S.E. profile. But you are SO MUCH younger! It would never have been an option really, not to take it.. I see my M.O. next month and we'll revisit the topic of taking the anti estrogen drugs. Especially after reading the stories. I am so very sorry to all who had those horrible recurrences. I am an oncology RN and I take care of many women with late stage bc and many I knew when they were originally treated. This disease really sucks!

LOVE IS ALL YOU NEEDDx 11/2014, DCIS, Right, Stage 0, Grade 3, 0/0 nodes, ER+/PR-, HER2-Surgery 12/4/2014 Lumpectomy: Right

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Jun 13, 2018 02:26AM mountainmama1973 wrote:

I am only three years out and had a lumpectomy, mammoplasty (bilat) with removal of a 7.2 cm whack of high grade DCIS with micromets. Clear margins. I take the hormone blocker aromamisin every other day and take DIM and I3C (alternative) every day. MRI of breasts in 2017 and one year later in 2018 show no recurrence. Trying to stick to an anti-inflammatory diet, lots of useful supplements and plant based and we'll see what happens. Seems according to this thread, folks have their recurrences at 8-10 years. I refused radiation and lymph node dissection and have no regrets.

Dx 10/24/2015, DCIS, Left, 6cm+, Stage 0, Grade 1, ER+/PR-, HER2+ (IHC) Targeted Therapy

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