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When do the side effects outweigh the benefits of taking Tamoxifen?

Rusie
Posts: 2
Joined: Sep 2011

Hi all,
I'm brand new here, though I was diagnosed with breast cancer in April 2009. I had a lumpectomy with sentinel node removal (clear) followed by chemo and radiation. I have been on tamoxifen for about a 1 1/2 years and it has caused me quite some trouble. My triglycerides and cholesterol (already on the high side) shot through the roof. I have had to layer on several other medications to attempt to control them and SHOULD be exercising and losing weight.

I have been in chemically induced menopause since my first chemo but had one bout of very light bleeding in January. Since then, I had a uterine biopsy (possibly one of the most painful experiences of my life and have given birth twice). The biopsy came back normal. I have been getting internal ultrasounds every 8-12 weeks and we have been watching cysts grow on one of my ovaries and my uterus has thickened. I am now scheduled to have the cyst, and probably the ovary removed and a thorough D&C.

Throughout my chemo, I got almost every little known side effect from the drugs I was taking. My oncologist had to look up some symptoms to see if they were related to treatment as she hadn't seen them before and they were all listed as unusual but possible side effects. Therefore I am really nervous that I am falling into the lesser category of people who get other cancers from tamoxifen.

My oncologist will not put me on aromatase inhibitors because she doesn't believe I am truly in menopause. My gyno does not want to remove my "lady parts" as she is concerned about long term side effects on my heart from doing so, even though that would allow me to switch off tamoxifen.

Nobody is willing to perform a CYP2D6 as my insurance won't cover it and I cannot afford to pay for it out of pocket. It would be nice to know that I at least have a chance of the tamoxifen working if I'm going to face all these side effects and worries.

Anyway, sorry for the long-winded post. I'm just wondering when the risks from the tamoxifen actually outweigh the possible benefits of it for people, though I am worried I am asking this question too late.

Also, what have others been told about having all thier "lady parts" removed and possible issues down the road from it? My gyno said that it has been shown to cause increased risk of heart disease if done before the age of 63 and I am now 45. It seems to me that those risks might be moderated by being able to shift off the tamoxifen to a drug that is less likely to spike my triglycerides...or that one might simply balance out the other and at least I would no longer have to worry about uterine/ovarian cancer from the tamoxifen, if I don't have to worry about that already.

butterflylvr's picture
butterflylvr
Posts: 943
Joined: Apr 2011

I don't have an answer for you but I will be watching your post closely. I had a bilateral mastectomy with sentinel node removal both sides (clear) followed by chemo and radiation myself. My cycle stopped after my first chemo infusion, and I've only been on Tamoxifen for almost three months. Similar stories... so my interest is peaked.

I had a uterine ultrasound a few months ago and there are things we are watching with me too. I am hoping the tamox doesn't escalate things down there like it seems to be doing for you.

I can't help you much, but I hope you find comfort in knowing someone is walking beside you.

Hugs,
Lorrie

disneyfan2008
Posts: 5340
Joined: Oct 2010

I am and just had total hyterectomy in May 2008-due to side effects of TAmoxifen. I had been menopausal 3-4 yrs prior to BC-I had internal ultrasounds @6tmths followed by a D & C each time. Shortly after this all started I started bleeding (LIKE someone turned on a faucet one night when out with friends)

so in the end I opted for surgery-I requested EVERYTHING to be removed.

Denise

I was takne off tamoxifen for 3 mths prior to surgery to see if helped but it did not. ONCE healed from surgery I went back on Tamoxifen for another 15mths..

grams2jc's picture
grams2jc
Posts: 756
Joined: May 2011

My cycle didn't stop until later in chemo, at least 1/2 way through. Then on my 1st trip to the gyno after treatment she recommended the pelvic ultrasound as a baseline for the Tamoxifen...ovarian cyst, fibroid and uterine thickening. Had the biopsy of the uterine lining with normal results so now will have pelvic ultrasounds again every 6 months. Will talk to my MO in October when I see her as my gyno really does recommend a hyst.

I don't know, can't decide, I guess when I get more info and maybe see what another ultrasound shows I will decide. Also will take into consideration my MOs opinion.

Good luck, we are all in this together,

Jennifer

Lynn Smith
Posts: 1265
Joined: Mar 2011

I am taking tamox and have been for almost 2 years(Dec 2009).I will soon be getting a blood test for cholestrol(sp?).I was just told by my doctor that it can cause a rise in that.

For the hysteroctomy.I had one at 48.Now 64.I am glad I had it ALL taken out.No worries for any of those female cancers.I always thought it would be just the uterus till someone I knew only had her uterus taken out and years later developed ovarian cancer.She passed.That cancer is usually to far gone before it is found.I knew after her death I wanted it ALL out.Now with bc and taking tamox I am happy.No worries about getting cancer in that area.

I have no problems with hot flashes.Not like so many talk about but I would rather deal with that than a worry of any of those female cancers.You take tamox to keep the cancer from coming back then it can strike somewhere else when it comes to the female organs.So many on here seem to be having alot of female problems with it.My friend is a 16 year survivor and now has a fibroid tumor on her ovary.She blames tamox.

Lynn Smith

gagee
Posts: 321
Joined: Sep 2010

Sorry to hear of your problems. I too had BC in Aug. 2010 and had a lumpectomy with 8 nodes removed and clear. Then had 33 rads and went on the Arimidex med. Had way to many side effects after a couple months and was taken off. No more side effects but afraid to take any other pill like that. When I was in my early 40's I had everything taken out and felt so much better. I am 64 now. I am happy I did as I don't have that to worry about. Wish I could be more help for you. I do know that this site has made things easier for me and many many others. It is so nice to be able to vent and have someone to listen to you.

Good luck to you and my Prayers are with You.
Diana

mamolady's picture
mamolady
Posts: 795
Joined: May 2011

Rusie,
I am 48 years old. Diagnosed last october. I had chemo, bilateral mastectomy and radiation. 5 nodes positive. I asked to have my ovary out so I could avoid tamoxifen. My concern was the long list of side effects compared to the shorter list with arimidex. Also, since my cancer is ER +, I wanted to eliminate that source completely. I had my ovary out in july and started arimidex.
I didn't get any argument from my oncologist or gyn. I asked my oncologist what I needed to do to keep my heart in shape. She said loose some weight and exercise regularly. I planned on loosing the weight I gained on chemo anyway.

Good luck!
Cindy

Heatherbelle's picture
Heatherbelle
Posts: 1221
Joined: Jun 2010

Hi Rusie.
I was diagnosed last year at age 34. I had bilateral mast + chemo. I was put on tamoxifen after chemo and started getting terrible joint pain. My oncologist didn't believe it was related to the tamoxifen, and i eventually went to another onc for a 2nd opinion about the tamox - and ended up getting taken off of it - i'm not even ER+, and just barely PR+, so it wasn't doing be a bit of good, and making me feel like crap to boot!
My new onc also ordered up genetic testing, and it came back that i am BRCA1 positive. Which means increased risk of ovarian cancer. She, my gynecologist, and my family doctor ALL recommended having at least my ovaries removed. So last tuesday I had a complete prophylactic hysterectomy - every thing out. I'm done having babies anyway, so it was an easy decision for me. I had the DaVinci robotic surgery -just a few incisions on my belly & everything done laproscopically. No stitches on the outside, 1 night hospital stay, and considerably less painful & shorter healing time than a standard hyst. One of my nurses at the hospital was completely shocked that I had that surgery with technically nothing wrong with me down there. I now have peace of mind knowing that ovarian and uterine cancers are not in my future. For now, I'm not on any anti-cancer type drugs. I have a follow up with my oncologist in a few weeks and we'll see from there if I will be on anything. I guess I'm technically in menopause now so there may be something I can take.
Another note - i was never told of any heart issues related to my hysterectomy & as i said earlier, ALL of my physicians wholeheartedly recommended it. My hot flashes aren't too bad, i take vitamin E for them & it really helps. I expected to feel a little "out of whack" for a few weeks from my hormones going away, but that is getting better every day.
Best of luck to you :)
*hugs*
Heather

New Flower
Posts: 3993
Joined: Aug 2009

Hi,
There are other option instead of Tamoxifen and ovary removal - monthly shots :Lupron or Zoladex. Please talk to your doctors about it. If your tumor was estrogen positive (ask your doctor about %) the Standards of care recommend another anti-estrogen drug aromatase inhibitor.
It is very personal decision and you and your doctors are the best for making decision weather or not you should go off anti=estrogen therapy or which path to take.

Mine was 90% estrogen positive. I also have had mastectomy at 46, Chemo and radiation; was on Tamoxifen for 15 months have had a negative biopsy and was on 12 months ultrasounds, was tested as poor metabolizer, have had a consultation about this test at Mayo clinic, who developed this test; undergone Zoladex and Arimidex treatment for 10 months, now back on Tamoxifen since April.

There are several publications about connection between ovary removal and heart attack. My gynecologist think that the risk of heart attack is very low. I have decided to keep my ovaries for now. Who knows I can change my mind at any time,
Wishing you to make decision which is best for you
Hugs
New Flower

Rusie
Posts: 2
Joined: Sep 2011

Thanks everyone for your responses. My oncologist has insisted that tamoxifen is her only resource in my case since I am not postmenopausal.

New Flower--can you tell me what you meant by "If your tumor was estrogen positive (ask your doctor about %) the Standards of care recommend another anti-estrogen drug aromatase inhibitor."? Do you mean that standard of care recommends something OTHER than tamoxifen? I am triple positive, though I can't put my hands on my biopsy report at the moment so can't tell you percentages.

New Flower
Posts: 3993
Joined: Aug 2009

Yes other than Tamoxifen. If you remove ovaries you still need to take other medication, such as Femara, Arimidex or Aromatisin. As I mentioned, there other two injectable drugs which suppress ovary, so they stop producing estrogen.
As far as cholesterol goes, there is a new view on high level of cholesterol. The ratio is more important than the total number. I might want to see an endocrinologist to help with cholesterol situation.

jendrey's picture
jendrey
Posts: 377
Joined: Sep 2009

Hi Rusie - so sorry you have cause to be here, but glad you found us!

When do the side effects outweigh the benefits of taking Tamoxifen? For me, that was before taking the very first pill. I have so many lingering side effects from 'treatment' that I've simply outright refused to subject myself to who-knows-what-else-life-changing side effects would likely occur with Tamoxifen. Ditto for the Arimidex et al. ...

Of course, nobody in oncology can comprehend that I've actively chosen this path. Thus, a visit there usually results in yet another scrip. I've gotten five so far.

Have you considered appealing your insurance company in their decision of denying you this test? Who is your insurance company? =)

Might want to run the STAR study by your doctor for consideration of tamoxifen's less evil cousin Rayloxifene. I suppose it'd hinge on peri/post menopausal status.

You can come here anytime to vent. We so get it here.

(((Hugs)))

SunnyMoon
Posts: 1
Joined: Apr 2013

Hi All,

I had BC in 2009 and have been on Tamoxifen since the end of my radiation treatment. The recommendation was for me to take tamoxifen for 5 years and zoladex injections for two years. During the firts two years while I was still on zoladex, I had no problem with cysts. However, the treatment put me on an indulced menopause, which with time I managed to deal with all the sysmptoms. I stopped Zoladex a year ago and I was expected to have my period back. Nothing happened during this first year without zoladex; however, since lastt December I started to have cramps, like period cramps but no period. When I did my regular check up this time the small cysts that I had in my ovaries had grown a lot to 7 cm, and I had a polip. I have 3 doctors following up my treatment, a breast surgeon, the oncologist and the gyno. They all agree that I cannot do any treatmentto that other women that did not BC can do to eliminate the cysts. The option given to me now are either go back to zoladex( which is really bad) or to remove my ovaries. 

We did an experiment this month to stop the tamoxifen for one month to see if the cysts would reduce. It did reduce a little bit and I even got my period after 3 1/2 years; however, its not enough, and once I go back to tamoxifen the cysts will grow again. I was also told by my Gyno and the doctor who did the TV Ultrasound that another risk of very large cysts( over 5 cm) is that they may strangle the vains in the ovaries( something like that) and this can become a medical emergency. 

So right now I'm very inclined to do the surgery to remove the ovaries and get this over with. I have been with regular cramps non stop from these cysts, and I need to be able to function normally again. None of the doctors said anything about heart risks. 

Any comments or suggestions about it will be appreciated. Have a nice weekend!!

 

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