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Old 09-23-2012, 07:44 PM   #1
Kellennea
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stupid Tamoxifen

About a month ago I had a very bad pain in my right ovary area, which I thought was strange because I haven't had a cycle since my first chemo treatment almost 2 years ago. Then i started spotting... it was time for my annual girlie exam so I mentioned it to my primary care doc who immediately ordered an ultra sound... a week later I received a call informing me that my lining was excessively thick and I had a 6cm complex cyst on my right ovary. I was referred to a Gyno oncologist and my entire world started spinning before me. At work we had just lost a client to ovarian cancer the Sunday before the call I received that Monday.

I called my oncologist right away and she got me in with one of the top Gyno oncologist. I decided on a complete abdominal hyterectomy, I wasn't taking any chances considering the side effects of Tamoxifen.

I had my surgery on Sept 7th and thank goodness everything came back benign!!! I am healing well, 30 staples removed and finally able to sleep on my side

I have been off of Tamoxifen for about a month now and ive noticed that I do not have any
more muscle or joint pain, I'm less moody and ive lost 8 pounds

I know I'm gonna have to go back on something when I go see my oncologist this week. So sad that the things that help us fight this dreaded disease take so much from us.
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10/01/10 - Dx at age 44. Found lump after miscarrying & was told it was "probably a clogged milk duct" not so much:
stage II - invasive ductal carcinoma ER/PR+ HER2+
10/01/10 - BRCA test - Negative
11/3/10 -2.5cm tumor removed via lumpectomy, clear margins. sentinal node biopsy - nodes clear!
12/2/10 - port placement
12/2/10 to 3/17/11 - 6 rounds of taxotere, carboplatin & herceptin every 3rd week.
04/20/11 - 6/6/11 - 33 rounds of radiation
4/6/11 to 11/2/11 - 11 additional rounds of herceptin every 3rd week
7/15/11 - port removal
7/5/11 started my 5 year journey on Tamoxifen
9/4/11 -1 yr Chest MRI - CLEAN!!!!
9/5/12 -2 yr Chest MRI - CLEAN!!!!
8/29/12 - Started spotting after being in chemopause 1.5 years. Ultra sound detected 6cm ovary mass & very thick lining. YIKES! Taken off Tamoxifen
9/6/12 - Full abdominal hysterectomy. Pathology report came back clean... thank you baby Jesus!!
9/28/12 - Started Anastrozole
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Old 09-23-2012, 08:57 PM   #2
caya
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Re: stupid Tamoxifen

Hi Kellennea,

Sorry to hear you had to suffer with another s/e of cancer treatment. Please take it easy and do not lift anything heavy (in fact, try not to lift at all) for awhile.

Your onc. may want to start you on an A/I if you had your ovaries out. I won't even get started on the s/es of those...

Keep your chin up!

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
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Old 09-24-2012, 02:19 AM   #3
Ellie F
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Re: stupid Tamoxifen

Sorry you have had to deal with this but thank goodness it was benign. You would think after cancer that enough is enough but that doesn't seem to be the case!
Take care of yourself.
Ellie
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Old 09-24-2012, 03:25 AM   #4
Jackie07
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Re: stupid Tamoxifen

Jpn J Clin Oncol. 2005 Oct;35(10):607-11.
Ovarian cyst formation in patients using tamoxifen for breast cancer.

Metindir J, Aslan S, Bilir G.
Source

Department of Obstetrics and Gynecology, Ankara Oncology Hospital, Ankara, Turkey. jmetindir@ttnet.net.tr

Abstract

OBJECTIVE:

The purpose of this study was to evaluate patient-related parameters that determine ovarian cyst formation in women using tamoxifen for breast cancer.
METHODS:

A retrospective review of tamoxifen-treated women with breast cancer who were followed up in the outpatient clinic at Ankara Oncology Hospital between January 2002 and December 2004 was performed. Tamoxifen doses and duration, post-treatment menstrual function, adjuvant therapy, ultrasonographic and hormonal [follicle-stimulating hormone and serum estradiol (E(2))] data, details of gynecologic surgical procedure and histopathology were recorded.
RESULTS:

Twenty-nine of 150 tamoxifen-treated patients (19.3%) had ovarian cysts. Cysts were detected in 28 of 57 pre-menopausal women (49.1%) and 1 of 93 post-menopausal women (1.1%). Patients with ovarian cysts had higher serum E(2) levels compared with patients without cysts (24 versus 345 pg/ml; P < 0.001). Patients with ovarian cysts had <1 year amenorrhoea duration (P < 0.001) compared with the patients without cysts. Adjuvant standard chemotherapy did not have relationship between the development of ovarian cysts. Multivariant analysis showed that cyst development is related to high E(2) levels (P < 0.05).
CONCLUSIONS:

Patients still having a menstrual cycle during tamoxifen had high risk (58.33%) of developing ovarian cysts. We have described an association between pre-menopausal patients using tamoxifen with high E(2) level and ovarian cyst enlargement.
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NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

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Last edited by Jackie07; 09-24-2012 at 03:33 AM..
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Old 09-24-2012, 05:11 AM   #5
Pray
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Re: stupid Tamoxifen

God bless you! I'm so sorry you had to go through this and so glad it was benign! Hope your recovery is quick.
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dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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Old 09-24-2012, 04:09 PM   #6
NEDenise
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Re: stupid Tamoxifen

Oh man!
If it's not one thing...it's another!
I'm so glad that you are home and on the mend.
Take it easy...very, very easy for a while.
Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
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