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Topic: 5 year survivor now done with tamoxifen....what to expect...

Forum: Moving Beyond Cancer —

Managing life after a breast cancer diagnosis, including rediscovering intimacy, coping with fear of recurrence, reconnecting relationships, sharing hobbies and interests, and finding inspiration in daily life.

Posted on: Jan 1, 2017 04:43PM

sunflowe wrote:

Hi all

A very happy New Year to all of you here, I am looking for some information, possible connections and or tips on what I might have to expect after the Tamoxifin procedure. After chemo and radiation it's been 5 years now and I am starting the new year without, today being my first day. I have talked with my Onc about possible other replacements as it has done well keeping my bones strong. Would love to hear others opinions on that as well.

I find that I have also used it also as a mental crutch of sorts! So I am a little anxious about things to come, withdrawal etc.

I would love it if you could speak up and share your experience with me.

Thank you for taking the time to read this.


Love, Peace and Light to you...
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Jan 1, 2017 05:48PM farmerlucy wrote:

Congratulations on being done! I've stopped Tamoxifen three time in the past four plus years and I never had any withdrawals from it. I think you'll be just fine. Take care!


Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Jan 1, 2017 06:34PM Moderators wrote:

Congratulations on being finished with your Tamoxifen treatment! Withdrawal symptoms seem to vary greatly, person to person. For bone strength you may find some helpful suggestions here as well: Bone Strength. Looking forward to hear other's experiences as well.

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jan 1, 2017 08:29PM coraleliz wrote:

I stopped Tamoxifen in October after 5 years. I feel better off of it. I guess my achy joints are from getting older. I actually have more hotflashes off of it than I did on it. I think most women have the opposite experience. As far as my hotflashes, they are mild & not really a problem.All my other side effects went away. I chose not to continue on an anti-hormonal for an additional 5 years.

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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Apr 23, 2017 04:16AM journey2bfree2bme wrote:

Congratulations on your five year milestones in your cancer journey. I had my five year visit this past week with my Oncologist. I stopped taking my Tamoxifen (after 5 years due to ER cancer). I have been experiencing extreme hot flashes, itchy eyes and some malaise. I came across your post while looking for any information on Tamoxifen withdrawal/abstinence effects. Any suggestions or forewarnings would be greatly appreciated.

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Jun 2, 2017 01:03PM - edited Jun 2, 2017 01:04PM by tc9876

I just finished 5 years of tamoxifen about a week and a half ago. My onco wanted me to do another 5 but the real benefit was so low that I said No, thank you! Since stopping, I feel tingling in my left arm and hand (neuropathy???) which I rarely felt before. I also have low energy. I haven't had any unusual aches or depressive thoughts. I also feel like I have a slight uptick in hot flashes. I have no regrets with not continuing though. I'm just trying to eat right, exercise and manage stress to keep my immune system high so that I can live my life!


Dx 9/2011, IDC, <1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2+
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Feb 2, 2018 07:30PM lala1 wrote:

I've also just finished 5 years on Tamoxifen and already I think my hot flashes are worse. Can anyone tell me if this will get better?

Mentor smooth round high profile memory gel implants 600cc (Left); Allergan 10 Moderate Profile 120cc (Right) ; Oncotype 15 Dx 11/27/2012, IDC, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 12/12/2012 Mastectomy: Left Hormonal Therapy 1/31/2013 Surgery 3/25/2013 Reconstruction (left): Silicone implant Surgery 6/24/2014 Reconstruction (left): Nipple reconstruction Surgery 1/19/2015 Prophylactic ovary removal
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Mar 13, 2018 01:53PM Stavasci wrote:

Congrats on 5 year survivor! I've been diagnosed with stage 1A IDC. Any tips to beat this cancer once for all in addition to radiation and or chemo? Did you have to change your diet a lot?  any tips is appreaciated.

Thanks 

Dx 2/15/2018, IDC, Left, 1cm, Stage IA, Grade 1, ER+/PR+, HER2-
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Mar 13, 2018 02:33PM edwards750 wrote:

I haven’t experienced joint pain since I went off Tamoxifen year before last. No hot flashes either or trouble concentrating.

Stavasci - there are things you can do that will help avoid a recurrence but the fact is there are no guarantees no matter what you do.

I am 6 years out from IDC, Stage 1, Grade 1. I had a lumpectomy and 33 radiation treatments. I took Tamoxifen for 5 years. I have an 8% chance of recurrence according to my Oncotype score.

From what I understand a more aggressive cancer increases your chances of a recurrence. Having said that there are ladies on this website who have had it come back who didn’t have aggressive cancers. Doctors don’t know exactly why.

You just do all you can with treatments and meds and watch your diet. Nothing too obsessive despite what you read about alcohol and sugar. Everything in moderation.

Good luck!

Diane

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Mar 13, 2018 03:14PM lala1 wrote:

Stavasci--- I agree...everything in moderation. One of the best things you can do to help prevent recurrence is exercise. I go to the gym pretty much every day and try to get 45-60 minutes of exercise. I strength train twice a week, do yoga twice a week and hit the treadmill, elliptical or bike 4-5 days a week. Before BC I had never exercised, never been in a gym. Now it's actually a passion of mine. I had my Vit D levels checked and found I was sorely lacking despite being outdoors all the time. Found out that our use of sunscreen helps to lower D levels. I'm taking 5000IU and have it back up in normal range. Good D levels will help prevent recurrence as well. Other things that will help are 4-5 servings of fruit and veggies every day (which I am really bad about not getting!) and according to my docs, a daily baby aspirin, and a good fish oil with DHA/EPA levels of at least 1000mg daily. I also take turmeric which more and more studies are showing to not only help with joint pain from Tamoxifen but might help prevent recurrence. But in all honestly, my doc told me that exercising daily and getting at least close to your BMI will help as much as hormone therapy.

Mentor smooth round high profile memory gel implants 600cc (Left); Allergan 10 Moderate Profile 120cc (Right) ; Oncotype 15 Dx 11/27/2012, IDC, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 12/12/2012 Mastectomy: Left Hormonal Therapy 1/31/2013 Surgery 3/25/2013 Reconstruction (left): Silicone implant Surgery 6/24/2014 Reconstruction (left): Nipple reconstruction Surgery 1/19/2015 Prophylactic ovary removal

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