Tammy’s Cancer Blog

Radiation Done! Now on to Tamoxifen….

I finally finished Radaition Treatments last Thursday! Yippee! Whew..glad I am done with that…I handled the treatments very well, but the working all day and driving over an hour (some days others drove) was just very tiring for a girl!

Sooooo…now what? I went to my Med. Onc. today. He gave me my prescription for Tamoxifen. I have a GYN appt. on April 18 in which he suggested getting it filled after the appt. I kept asking why as this GYN appt. is not going to change my mind, but he just wants me to make sure I am comfortable taking Tamoxifen. I am quite sure in my mind that I do not have a choice when it will increase my survival rate.

I am going to get the opinion of a GYN because
-my mother died at 52 with Uterine Sarcoma
-I am having GYN problems now before Tamoxifen starts’
-maybe this Gyn doc should do a check before Tamoxifen just to get a baseline so if changes occur it will be obvious.

I am starting to wonder if I am more scared of the breast cancer recurrence or this small chance of Uterine cancer? I am really not a hypochondriac, but cancer fills my mind with “What if’s”. Maybe why not just have a hysterectomy (leave ovaries) just so I don’t have to face the worrying.
I hope this GYN has answers…because I have questions.

In the meantime…any side effects? issues of Tamoxifen? how to handle side effects? Anyone out there done with Tamoxifen and have any long term effects?
Did anyone stop taking Tamoxifen before 5 years..if so Why?
I would love to hear your story.

Posted on March 28, 2012 at 9:08:12 AM by Tammy (Radiation Done! Now on to Tamoxifen…., 3 comments, 142 views)

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Hi. I am on Tamoxifen, have been on it for 2 years now. The issues I had with it are Hot Flashes, Constipation (This is the worst by far) Bone Pain, and Nausea (Dry Heaves) I too worry about that small “What ifs”...I hope the hell I don’t have any long term effects…but it is always in the back of my mind. I had my first ultrasound the year after I started and no signs of gynecological problems…so round two is coming up in August….Expect side effects within the first 2 weeks and beyond…you may start to not notice it later on…but for me, it took awhile…As I said, the constipation is the worst, so up your fruit and vegetables…even that sometimes doesn’t work…But then again, everyone has different side effects, and some not at all. I wish you the best of luck with it.

Posted on March 28, 2012 at 3:43:52 AM by Cathy
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Reply to Cathy

Hi Tammy:

So glad you made it through radiation. I am on Arimidex; they tell me this is the drug they give us older women (past menopause) which does almost the same thing as Tamoxifen which is to purposely deplete the Estrogen in your body. This will cause you to have symptoms of menopause. The Arimidex gives me hot flashes, night sweats, makes me a bit hyper at times. I know the Arimidex can also cause bone loss, not sure if the Tamoxifen does the same.

Ask questions and keep us posted Tammy.

Take Care,

Posted on March 28, 2012 at 12:33:23 PM by Cathy
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Reply to Cathy

X

Tammy-
I am glad that your radiation tretments (and DRIVES) are behind you now! I was prescribed Tamoxifen afer I finished chemo. The first side effect I noticed right away was that it shriveled up and shrunk my vagina. Sex was painful if not unbareable. Like razor blades. Sorry, but that is the truth. Within about 3 months my feet began to contort and curl up during the night like awful charlie horses but instead of being in the backs of my legs were in my feet. I could not walk. It was keeping me awake all night. I decided that this drug is not for me. In talking with my oncologist, he felt that the larger concern in my case was that I was Her2+, and so he said that the Tamoxifen only decreased my personal risk of recurrence by 3% (because being Her2+ gives me the gresater risk), and we both decided that quality of life had to stand for more than that and I stopped it at the 5 1/2 month point. I never looked back. He also told me that he has often wondered of all the women out there in these studies who took Tamoxifen, and did not have a recurrence, we will never know if they would have NOT had a recurrence ANYWAY had they NOT taken it. There is no way to know that. He said that in cancer everything beyond surgery is just extra insurance on a policy. One never knows if you will need it or not and so you weight the risk with the benefit. In my case also, I had taken birth control years 15 years leadin up to the day of my diagnosis. Obviously that contributor is gone from my life now. Eating healthy, excerising and frequent check ups with oncology and breast surgeoon are my 3% reduction in risk now. I have to believe that stopping that daily dose of hormones has decreased my risk as well. Women who are prescribed Tamoxifen are still producing estrogen in their ovaries. The Tamoxifen stops estrogen from being received by any potential estrogen receptors in any potiential cancer cell still lingering after surgery, chemo and radiation. That is a very slim slim chance that this cell even exists. It does not stop your body from producing the estrogen, however, and women can still get pregnant on Tamoxifen. Another side note is that women who are post menopausal produce estrogen in other body glands such as their thyroid and hypothlimus. The class of drugs they are prescribed (called Aromitase Inhibitors) stops this small production of estrogen. I only make that distiction because I think some women are confused as to what the drugs actually do in the body. I always tell women to at least TRY the Tamoxifen (with your GYN’s blessing of course because of your family history) and see if you have intolerable side effects or not. Many women do not suffer side effects. You won’t know until you try and it may give you peace of mind to at least know you gave it a try. Best of luck to you with the GYN. I had thickening last year and 2 to 3 week spotting each and every month so my GYN did an endometrial biopsy then a D & C. She said though the risk was slim for uterine cancer, I had taken the Tamoxifen and she wanted to be sure. Those procedures hurt A LOT and I was clear there but now the ovary is in question as to being the cause of the long lasting spotting and dripping. I was told that hysterectomy at a pre-menopausal age can cause the vagina to prolapse so thankfully my uterus was A-ok and she is STAYING PUT! My grandmother had a hyst at age 22 and “bubble” which was her vagina falling out, in effect. No thank you. Let us know what you decide! Good luck!

Posted on March 28, 2012 at 7:00:50 AM by KorynH

 X
Thanks for your insite and information. Your personal experiences and your grandmothers will be taken into consideration. I really did not think about the prolapse. LIKE RAZER BLADES????...well that does not sound like a “good time”!
At this point, I have the prescription and I think I will break down and look into this info more. I think I will look at the benefit with my stage. I just happen to know someone I treated 18 yeats ago that recurred and wonder if she had Tamoxifen if it would be different BUT she is fine with a mastectomy no chemo AND more importantly no side effects for the 5 years..
Your response gives me the knowledge to continue researching on my own..we know we have to be our own advocate! Thanks so much.

Posted on March 31, 2012 at 5:22:57 AM by Tammy

Firstly, congrats on finishing radiation—-I got through radiation pretty easily also and I remember how happy I was when we were finished. I told the Tech—I hope I never see you again!
I have been on Tamoxifen for about 1 1/2 years. I would say that I had very little side effects to the Tamoxifen. I had already had a radical hysterectomy (thanks to cervical cancer) so I had already gone through the hot flashes etc. I would say that I did have some aches and pains…not sure if that was the Tamoxifen or the year or so of treatment that I was just finishing up. Constipation…still struggle with that sometimes but overall, I had very few issues. I know that there are others that had a much harder time.
Good luck at the Gyn…you will be watched more closely on Tamoxifen.

Posted on March 28, 2012 at 6:05:01 PM by Rachel

Such good news for NEGATIVE biopsy! Let the next phase begin. Praying it goes smoothly and quickly for you.

Posted on March 13, 2012 at 4:54:37 PM by Nanice

wondneful news:-) :-) :-)

Posted on March 13, 2012 at 9:26:03 PM by Cindy

Wonderful news! What a relief! Have a wonderful day!

Posted on March 14, 2012 at 2:37:45 AM by Eileen

Awesome news! I am thrilled for you! Here’s to hoping they get things figured out soon.

Posted on March 14, 2012 at 12:11:01 PM by Cathy