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Tamoxfin-were you told up front to check reguarly????

disneyfan2008
Posts: 5299
Joined: Oct 2010

Just curious-when I started Tamoxifen (finished my 5th year in Aug) WERE YOU TOLD by oncologist to have internal ultra sounds (not sure of official name) every 3-6 mths? I went to my reg gyno check up and no mention of it. My next appt with oncologist said why didnt' gyno check for enlarging of uterus? I contacted my LONG time (LOVE HIM -great DR) but he said not his regular procedure. SHE INSISTED I had procdure (followed by D & C each time) She was RIGHT...I ended up with total hystectomy due to side effects of tamoxfin.

 

Just wondering if other were told to do as such.

Denise

KathiM's picture
KathiM
Posts: 7874
Joined: Aug 2005

But I had already had a total hysterectomy, so it didn't apply...

 

Thanks for the information!  (The next risk, after uterine cancer, is blood pressure issues...)

 

Hugs, Kathi

TraciInLA's picture
TraciInLA
Posts: 1838
Joined: Jul 2009

This one definitely falls under the category of "We're All Different."

My gynecologist doesn't automatically do regular transvaginal ultrasounds on women who are taking Tamoxifen, and judges their need on a case-by-case basis.  

In my case, I'm not at particularly high risk for endometrial cancer, I was already religious about my annual exams, I've never had any gynecological issues whatsoever (thank goodness), and my period is so regular and normal, it's positively boring.

So my gynecologist and oncologist agreed that what was most important for me was to religiously keep up with my annual pelvic exams, and to immediately see my gynecologist if there are any changes at all in my period or any spotting.  She would only order an ultrasound if there were any changes or concerns.

I've been on Tamoxifen for about 4 1/2 years now (and both doctors agree I'll stay on it for 10 years), and thankfully have had no problems -- it hasn't affected my period or my exams one bit.

Again, every doctor has their own ways of doing things, and each of our health situations is unique -- that's just what my doctors decided was best for me.

Traci

disneyfan2008
Posts: 5299
Joined: Oct 2010

Traci: HAPPY FOR YOU....lUCKILY MY ONOCLOGIST INSISTED AND WORKED OUT BEST FOR ME.

Denise

helen e's picture
helen e
Posts: 222
Joined: Sep 2009

Why 10 years on Tamoxifen? Most Dr's (mine) say only 5 years. I am on my last year of Tamoxifen and cannot wait to get of of it!

Josie21
Posts: 338
Joined: Nov 2012

Hi Denise.

My oncologist told me about the side effects of tamoxifen.  She would get mad at me when I told her that we would take trips back and forth to Florida in the car and only stop quick for gas and food.  She said I had to get out walk around every three hours because of possible blood clots.  As far as the vaginal ultrasounds, my gynecologist was pretty religious about that.  I think it was her individual approach.  It may have also been my age, but she was great.  I hated doing it more than anything, but she was a very cautious doctor.  As soon as I started developing ovarian cysts, she suggested the hysterectomy and it was the best thing I ever did. It just seems that breast cancer always gives you other health issues to worry about no matter how much time goes by.

Hugs,

Ginny

disneyfan2008
Posts: 5299
Joined: Oct 2010

Ginny: Thanks for the reply...I did end up with a very enlarged uterus. I did take a baby asprin a day...never heard of walking around a lot.

Denise

disneyfan2008
Posts: 5299
Joined: Oct 2010

after total hysterctomy-still annual pap etc..I thought I was done with all that until MY gyno called me back. What are they checking for? I didnt' think I had much left to worry about!

 

Denise

Lynn Smith
Posts: 1265
Joined: Mar 2011

my breast Surgeon told me I was a good candiate for taking tamox since I had a total hysteroctomy. Never had any check ups.They took my cervic ovaries, uterus. The gyno said he never wanted to go back in my belly again.I was happy to get it all out at once. A few less places to get cancer. 

Lynn Smith 

Double Whammy's picture
Double Whammy
Posts: 2267
Joined: Jun 2010

of Tamoxifen (uterine cancer) and it can be the really scarey kind (UPSC).  Pelvic exams alone do not screen for uterine cancer.  The  most common symptom is postmenopausal bleeding or spotting between periods if you're still having them. I had uterine cancer and had absolutely NO symptoms and I was very "lucky" to have endometrial cells (normal) show up on my Pap which prompted my transvaginal ultrasound and subsequent biopsy.  This is very unusual, and it turned out I had cancer (I had the garden variety kind).  Both my breast and endometrial cancers were estrogen dependent, soooooooo I'm thinking if you had estrogen receptor positive bc, it might be a good idea to get an occasional ultrasound just to be sure there is no thickeing of the lining, especially because the uterus uses tamoxifen like estrogen.   Traci, maybe because you're still having periods and they're regular indicates that you're sloughing off anything that might otherwise build up and grow crazy cells, but the only way to be sure of course is to biopsy.  The ultrasound is painless, not the biopsy. 

I am not unusual having had both bc and uterine cancer (at the same time was a little special, tho), and estrogen was a major culprit in my case for both.  I was told that it is not unusual for women to have both bc and uterine cancer over the course of her lifetime, and that statement by a gynecologic oncologist, had nothing to do with Tamoxifen.  Add Tamoxifen to the equation and . . ..I think I'd ask for an occasional ultrasound while on Tamoxifen. 

I'm now on Tamoxifen but have had a hysterectomy so don't have to worry about any gyn cancers again.  Just have to worry about stroke and blood pressure issues now.    Ah, breast cancer, the gift that keeps on giving.

Suzanne

 

disneyfan2008
Posts: 5299
Joined: Oct 2010

Suzanne: with MY total hystectomy I thought I didn't have to go for annual exam with GYNo since nothing left per say!

 

Surprise was on me when the office called to say YOU must come in.

Denise

Double Whammy's picture
Double Whammy
Posts: 2267
Joined: Jun 2010

but was on a 4-month schedule for the first 2 years.  I think I'm done after 5 years (or at least done with the gyn oncologist).  But I did have endometrial/uterine cancer.  Do you know if you had cancer or complex atypical hyperplasia?  I think the frequency of exams (and adjuvant treatment) has to do with the type and grade of the cancer/tumor, how far it invaded the uterine wall, size of the tumor, etc.  Similar guidelines to breast cancer actually.    Denise, you said you had an enlarged uterus, but why was it enlarged?  Do you have a copy of your pathology report? 

The reason they do a Pap is looking for wierd cells at the top of the vaginal cuff.  If endo cancer comes back, it's often there, yet they say Paps seldom detect it (really?).  They tell me the most important part of the exam is the rectovaginal part (ugh) because they could feel a tumor behind the vagina.  Most of the time, recurrences of the garden variety type (endometroid adenocarcinoma) can be caught earlythis way and successfully treated with radiation. 

I was told if I did not have cancer, but had only complex atypical hyperplasia (pre cancer) that my followups would be yearly for 5 years and I'm not sure whether that would have been with the gyn oncologist or with regular gyn.  Those pre cancer cells, too, can take up residence elsewhere and eventually grow, especially if your uterus was not removed intact.  But it is highly unlikely.  It is also unlikely for me to have a recurrence, especially after 3 1/2 years, but I will go and be checked for 5 years.  After that, I'm not sure.  I would like those exams to be over. 

Suzanne

disneyfan2008
Posts: 5299
Joined: Oct 2010

Suzanne-thanks for the reply

Denise

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