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Old 08-10-2015, 02:00 PM   #1
europa
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Tamoxifen warning

I went through something horrific last week and wanted to share since it could happen to anyone taking Tamoxifen.
As many of you know Tamoxifen can cause uterine cancer, tiny chance, but it can happen. So Sunday night I was getting into the shower when I noticed I was spotting. This is weird for me because I have not spotted or had a period in years...since chemo. So I called my doctor who was not too concerned but wanted me to pop in the next day for an ultrasound. I woke up the next morning to what looked like a horrible miscarriage. There was blood everywhere and I was losing it fast...like it was pumping out of me. I called my doctor who obviously had me come in. I don't think they understood the volume I was describing because I'm sure they would of asked me to call the ambulance. I drove myself to the hospital (which was a HUGE mistake), I was in no state to do so. My doctor performed an ultrasound and found nothing. So then the tests started, did I have a miscarriage, could it be my thyroid, maybe it was a period...blah blah blah. I was losing blood during all the blood work and inquisitions. Finally they performed a scan where they blew up my uterus with saline. And there on the screen was a large polyp. So there was the answer. However when they took out the clamp and other gadgets it created a massive blood Avalanche and that was it. I went into convulsions and was rushed into the ER and then into emergency surgery. They did a DNC and got rid of the polyp. But now I am left with a decision, should I stay on Tamoxifen for 7 more years and face this again potentially or should I start getting Lupron or Zoladex shots again and switch to Arimidex. By the way, I had horrible side effects from Zoladex. I lost a lot of hair, gained 17 pounds in three weeks and broke out in menopausal acne.
This is the second DNC they've done. The last one was in February. I was experiencing painful cramps and they found 4 polyps...all benign.

Thoughts?
__________________
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.


www.mychemobag.org
www.facebook.com/mychemobag

8 YEARS NED
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Old 08-10-2015, 03:26 PM   #2
Lucy
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Re: Tamoxifen warning

Just from looking at your signature, I would discuss with my oncologist going off hormone therapy. A few years ago they wouldn't put women on it if they were 10% or less ER positive and I've been told twice now that there's no evidence showing that there's a real benefit to taking hormone therapy for lower ER positive cancers. I took anastrozole for a while because it might help but it was causing enough liver issues that I was taken off of it and they're still doing tests before we even discuss my going back on it. Part of me is afraid to not go back on it but another part of me wonders if it's worth it. Everyone has to make that decision for themselves but I think I would still discuss it with the oncologist.

I hope everything works out for you because I can only imagine how scary that must've been. Let us know what you decide and how it goes.

Hugs
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Old 08-10-2015, 04:04 PM   #3
jaykay
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Posts: 639
Re: Tamoxifen warning

I would go off the tamoxifen and talk to your onc about alternatives because what you are describing is one of the more dangerous side effects. Glad you are okay but I wouldn't want to go through that again. It had to be terrifying

Janis
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 08-11-2015, 01:48 PM   #4
Debbie L.
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Re: Tamoxifen warning

Hi Europa. What a terrible week. Are you feeling recovered? Did you get a transfusion? Are you taking supplemental iron to build back up?

I see one other option. A vaginal hysterectomy (uterus only) is a pretty simple procedure. Then you could continue with the Tamoxifen (if the uterine side effects are your only concern with it), and not have to worry about all that goes with being menopausal (since you'd still have your ovaries, even though you would no longer have periods, you wouldn't actually be menopausal).

As others have mentioned, suppressing your ovaries now so you could take an AI might make more sense if the cancer were strongly ER+. In your case, the side effects (early menopause, bone loss, etc) might outweigh the benefits.

What does your onc think? It could be a good time for a second opinion at an NCI-designated Comprehensive Cancer Center, if that appeals.

Good luck, keep us posted, okay?

Debbie Laxague
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Old 08-14-2015, 03:24 PM   #5
agness
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Posts: 285
Re: Tamoxifen warning

A little discussed fact is that for up to 20% of women of European descent, and 5% of those of Asian descent, tamoxifen is not properly metabolized in the liver. It is stated that for these patients taking tamoxifen is worse than doing nothing, likely due to unmanaged estrogen levels persisting in spite of supposed treatment. Docs know this, at least the decision-making bodies, and yet no testing is recommended -- presumably todave insurance companies money. Disgraceful if you ask me.

http://www.ncbi.nlm.nih.gov/books/NB...?report=reader

A gal in my online chemo group developed a massive amount of fibroids and ovarian cysts in a short amount of time while on tamox. She thought fine, I'll have a hyst. I have a lot of experience prior researching fibroids and I suggested that (since her surgery was delayed and she was in a lot of pain) that she ask her doc to switch her to Lupron of Zoladex which are GnRH inhibitors. These drugs both shrink fibroids as well as reduce estrogen in the body, also working for breast cancer patients.

Post-menopausal women should already be on aromatase inhibitors (unless perhaps you are weakly ER+ and doing natural methods to reduce estrogens). More recent studies have shown that ovarian suppression with lupron or zoladex plus an aromatase inhibitor seems to be more effective. None of these drugs are a walk in the park and estrogen depketion can increase cognitive impairment.

I hope this is helpful.

Ann
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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Old 08-22-2015, 07:37 PM   #6
europa
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Posts: 360
Re: Tamoxifen warning

Got my results back at the polyp was benign. So now comes the serious conversation with my oncologist about my uterus and Tamoxifen use, I'm leaning to remove the uterus and keeping the ovaries. But we'll see. Thank you all for the wonderful messages.
__________________
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.


www.mychemobag.org
www.facebook.com/mychemobag

8 YEARS NED
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Old 08-23-2015, 04:02 AM   #7
LeahM
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Posts: 395
Re: Tamoxifen warning

That's what I did. Kept my uterus, got rid of everything else. Still take Tamox
__________________
39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
www.onmywaytosurvivorhood.blogspot.com
www.thechemobag.com
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Old 08-23-2015, 12:49 PM   #8
donocco
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Join Date: Oct 2013
Posts: 464
Re: Tamoxifen warning

Europa

I doubled checked my pharmacy material. The SERM Raloxifine (Evista) does not act as an estrogen on the uterus and cant induce cancers like Tamoxifen can.

Evista is FDA approved to PREVENT secondary breast cancers
like Tamoxifen, yet the literature states it shouldnt be used to treat breast cancer. This makes little sense to me. Talk with your oncologist about this. Maybe he (she) can tell you why Evista has been approved to prevent secondary breast cancers (like Tamoxifen) but has no anti-cancer action against already established cancers. This does not add up logically.

Paul
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Old 08-23-2015, 04:39 PM   #9
Pat94
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Posts: 100
Re: Tamoxifen warning

Agness - regarding your statement "unless perhaps you are weakly ER+ and doing natural methods to reduce estrogens," what are natural methods? I was ER - 1st time & ER + 5% on recurrence. PR - on both. Onc wants to start me on Letrozole. I have major concerns about it because I believe it will have little or no positive impact while I have the side effects it brings on. Would love to investigate natural options.
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Old 08-26-2015, 06:06 AM   #10
jra40
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Posts: 260
Re: Tamoxifen warning

Hi Europa,

Just wanted to share my recent experience. I have been on Tamoxifen since 2011 and it really caused me a lot of problems. Thickening of the uterine lining, irregular periods, etc. I am 44 and decided to go with a hysterectomy with ovary removal. I am 3 weeks out from surgery, moved from Tamoxifen to Arimidex. I am happy with my decision and physically, feeling very good at this point. It's a tough and personal decision but I did not like the side effects of Tamoxifen and anything I can do to cut my chances of reoccurrence, I will do.

Good luck with what you decide! Praying for you!

Jessica
__________________
11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 08-26-2015, 08:17 PM   #11
KathyT
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Location: Glendale, AZ
Posts: 210
Re: Tamoxifen warning

Jra40,
I am having a total hysterectomy Sept 8th and will switch from Tamoxifen to an AI. I have been nervous about the after effects of the hysterectomy....thanks for sharing your story it gives me courage and reassurance that I will do fine too
__________________
Kathy
38 years old!

January 17th 2014-mammo, ultrasound, biopsy
January 20th 2014- diagnosed, ER/PR+, Her2+++, Stage 2A
January 21st 2014-MRI, right breast only plus lymph nodes
January 23rd 2014- Pet scan-2 cm tumor, 3 lymph nodes
February 4th 2014-port insertion
February 12th 2014-first chemo treatment(TCHP x6 cycles)
May 28th 2014-LAST chemo treatment!!
July 10th 2014-double mastectomy
July 29th 2014-start radiation(30)
Sept. 11th 2014last radiation treatment!!!
November 12 2014-started Tamoxifen
January 20 2015-reconstruction begins, lat flap
February 4 2015-last Herceptin treatment!!
April 24, 2015- pet scan-NED!!
June 3 2015- exchange surgery, port removed!!
September 8 2015-hysterectomy/oophorectomy
September 15 2015-Revision of lat flap reconstruction
December 23 2015-nipple reconstruction
May 9th 2016-Mets to pituitary gland, liver and C7 vertebrae
May 10th-port put back in:(
May 17th- biopsy of mass on back
May 19th-started Herceptin/Perjeta
May 20th-5 treatments Cyberknife to pituitary gland tumor
June 9th-Started THP (will have 6 cycles)
August 17th-MRI of brain, significant reduction in tumor
😃, repeat MRI in 3 months. Received first Zometa
infusion.
June 24th 2019- Thoracic spine Mets, leptomeningeal Mets , 10 radiation treatments
Aug 1st- Ommaya Reservoir implanted
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Old 08-27-2015, 10:34 AM   #12
agness
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Location: Seattle, WA
Posts: 285
Re: Tamoxifen warning

Pat - I will post more to a new thread about natural ways to improve hormonal status. I just need a day or so to collect some links and quotes together
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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Old 09-03-2015, 04:31 PM   #13
europa
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Posts: 360
Re: Tamoxifen warning

And the verdict is in. After meeting with five doctors I have decided (if I get polyps again) to remove my uterus and keep my ovaries until I have completed Tamoxifen. Then I'll get the oopherectomy.
I am relieved that o now have a plan and everyone knows about it. So the next time, if there is a next time, no DNC.
__________________
DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
01/07/2019 Mastectomy and expanders put in
3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.


www.mychemobag.org
www.facebook.com/mychemobag

8 YEARS NED
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Old 09-05-2015, 05:51 AM   #14
Debbie L.
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Posts: 463
Re: Tamoxifen warning

Thanks for the update, Europa. I agree -- it is always a relief to have a plan, and yours sounds like a good one.

Debbie Laxague
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