Should I take TAMOXIFEN at 32 yrs!!

Joe13

Hi Girls,

I'm 32 years old I finished chemo in october 08 and radiation in February 09!

Now my Doc recommends me Tamoxifen, knowing all the sides effects i am a bit scarred if I should take it or not! I don't have children yet ! but wish to have many! Someone also told me that tamoxifen induces menopause!!! I am not a total estrogen positive neither negative i'am right in the midlle which they consider slightly positive.

can you please give me your thoughts on this especially girls who were on tamoxifen and did have healthy children after and everything went ok.

Thank you so much! I need to make a desicion soon!!

kayakgirl

Hi Joe:

Hugs to you. It is much harder to be young and dealing with breast cancer. I am older than you but wished I was offered Tamoxifen 10 years ago when I had a lumpectomy that didn't show cancer but did show lobular hyperplasia and other abnormal cells. The Tamoxifen may of prevented me from getting invasive lobular cancer.

Tamoxifen does decrease your chance of the breast cancer reoccurring in your breast and in other parts of your body (metastatic breast cancer). I would ask your oncologist or get a second opinion oncologist and asked based on your tumor pathology how much would Tamoxifen decrease your personal risk of recurrence and then make an informed choice. The oncology research community is making great strives in understanding breast cancer at a molecular level and may have much better treatment down the line and IMHO Tamoxifen may be a good insurance policy to decrease your risk of the breast cancer reoccurring until new and better treatment is available.

I think it is  unusual for Tamoxifen to cause menopause in someone your age. In fact you will need to use birth control while on Tamoxifen.You may want to make an appointment to see a gynecological oncologist that has an interest in fertility after cancer. I don't know where you are located. I know that there is a great one at the Hospital of the University of Pennsylvania in Philadelphia. You may also want to look for a support group for young women with breast cancer. Take care and good luck to you.

Agnes

whippetmom

Joe:

Well, technically Tamoxifen induces hot flashes - and your menses might cease temporarily, but with everything I have read, they will resume [at your age] once you stop taking the drug.  Here is an article on our own bc.org to read:

http://www.breastcancer.org/tips/fert_preg_adopt/fertility/tamoxifen.jsp

However, that said, I do note that you are PR negative.  Studies have shown that Tamoxifen has reduced benefit in women whose tumors are ER positive and PR negative.  So please discuss this further with your oncologist.  Here is a link to discuss with your onc:

http://www.medicalnewstoday.com/articles/30271.php

An interesting new UK study re: ER+/PR- cancers:

http://www.cancerlineuk.net/83228?itemId=6341301

You are so young and I just feel that any treatment which has any measurable benefit is a very important consideration as part of your treatment plan. 

Have you had an Oncotype DX test?  Ask for one....it will determine your recurrence risk...you have to ask for it though....most insurance carriers are not thrilled about paying for it.

Deborah

KorynH

I am done having children at age 45 but my doc put me on Tamoxifen in May.  For 3 1/2 months I had allergic reactions including hives on my thighs, backs of knees, eyelids, coughing, itchy palms and then yesterday the worst of all swollen lips! Look!    I couldn't believe how bad they got! No more Tamoxifen for this girl!  I never wanted to take it in the first place.  The green snotty vaginal discharge was the worst!  Nobody talks about that part!  I also have now done some exhaustive research into hormones and how our bodies NEED them yet the doctors are all so deathly afraid of them (and law suits mor importantly) that keeping women drugged up saves their own behinds.  My doctor told me he is okay with me not taking it so long as I am not having periods anymore, which I am not. Chemo put me into menopause and brought on the hot flashes. They weren't any worse on Tamoxifen.  A great book is What Your Doctor May Not Tell You About Breast Cancer which describes the hormone equation - I highly recommend you read it. You'll understand a lot more about all of this blocking estrigen theory after you do. Read all you can before commiting to this drug, especially if you want to have children.  Pregnancy and breast feeding is actually GOOD for reducing your recurrence risks!  Best of luck!

Panchoandlefty

I have to respectfully disagree with KorynH. 

BECAUSE you are 32, you should take the Tamoxifen. If you have problems, and they almost certainly won't be so extreme, cross that bridge when you get there. It won't put you in menopause. 

I am premenopausal and have been on it almost a year with a few hot flashes and no other SEs. My period is regular as rain, though a little heavier than it was before chemo. 

Different people have different reactions to all sorts of drugs. I am sorry that KorynH has been through so much, but it certainly isn't typical. Allergic reactions to Tamoxifen are extremely rare. 

Most premenopausal women will say they don't LIKE Tamoxifen, but see it as a necessary (and bearable) evil. Yes, our bodies do thrive with more hormones, but so does our cancer.  

For ER+ women, Tamoxifen is at least as (often more) important than chemo to reduce the risk of the cancer spreading. 

Many (most?) of the women reading this thread were either menopausal (or close to it) prior to diagnosis or put into menopause by chemo. At 32, you are in a whole different ball-game in terms of the estrogen your body is churning out. Your treatment options are not as optional, if that make sense.  

If you were 52 or 62 and only a little ER+, skipping Tamoxifen might be a reasonable conversation, because you would have lower hormonal levels. At 32, refusing Tamoxifen (particularly without TRYING it) is simply foolish.  

Talk to your Oncologist about your options. He/she may be able to nail down a number for you about risk reduction, but it is almost certainly significant given your age. 

Also, relative to your fertility, I think Tamoxifen (with or without ovarian suppression) is pretty safe. A lot of women will do Tamoxifen for a couple of years, have a break to have a baby, and then resume hormonal therapy. It happens all the time.  Youngsurvival.org has a whole fertility group on its message board with tons of BTDT info from the premenopausal set. 

Some people have a genetic quirk metabolizing Tamoxifen that makes them over-sensitive (or under-sensitive) to Tamox.  Most just trudge along. Online, you hear the horror-stories because people having problems have more of a need to be heard than people just cruising along.

I am not diminishing anyone's experience, but just saying that there are a zillion women (including young women) who dutifully took Tamoxifen 5 years with no weight gain, minimal hot flashes, and no fertility consequence.   BTW, I have never had horrid snotty discharge.

In premenopausal women (I'm one!) Tamoxifen DOES NOT induce menopause. It may cause hot-flashes and make you moody, but that it it. Generally, for those of us whose periods came back after chemo (mine did at 12 weeks) Tamoxifen may make the periods heavier.  

Anyway, talk about it with your doctor and have an open mind. You have a long life ahead of you.

Stephanie 

samiam40

I also wish I had begun taking tamox in my 30s.  At 34, I was diagnosed with atypical hyperplasia and other cellular abnormalities, and was offered tamox, but refused.  At 40, I was diagnosed with IDC and can't help but wonder if the tamox would have prevented that.  I began taking tamox after finishing chemo in June, and I have now been on it for two months without a single hot flash or other bothersome symptom.  I'm also still getting periods. 

Get a second opinion, but don't let fear of something you haven't tried yet prevent you from taking a possibly lifesaving drug.

whippetmom

Joe:  You might want to visit this website to gather additional information:

http://www.youngsurvival.org/young-women-and-bc/

BTW:  I agree with everything Stephanie shared with you above!

Joe13

Thank you girls!!! I'm seeing my Oncologyst this friday and let's see how he say! I will keep you posted!!!

flamingo34

I'm curious....What did you and your oncologist decide to do?  I'm in the same boat, except that I'm two years older at 34.  I'm about to get married and want to have children.  And then the increased risks and side effects of the drug scare me too.  So, I am undecided now, but I have 6 weeks of radiation before I have to decide.

Joe13

I decided not to take it...I am not a total estrogen positive so I will not take it for now...maybe after i have children...but i'm not married yet so it could take a while.

CTMOM1234

Go look on the DCIS board and you'll see many many of us are relatively young and pre-meno. Many of us got our diagnosis after a routine mammo. and are in our 40s (and 30s too).  And many of us have opted out of tamoxifen. I respectfully disagree with a poster who wrote that tamoxifen is more important than chemo -- that really depends on your situation, and for me, chemo wasn't prescribed, but rads were since I chose a lumpectomy rather than mastectomy. I was given the option to take tamoxifen after rads and was told that my chance of recurrence is 5% and would go down to 2.5% if I took tamoxfien for 5 years -- that's 1800+ pills with the side effects including uterine and liver issues; I can live with entering menopause naturally with a 95% rather than 97.5% chance of no recurrence.

AJ123abc

I am 34. I was diagnosed with DCIS. just got my bilateral mastectomy. The final pathology report shows now that I had small invasive cancer where DCIS was (0.9cm, grade 2/stage 1). fortuntely it had not spread to anywhere, and my lymph node was ok (they took out just one). I am also told to take tamoxifen. But I refuse to do so.

Taking Tamoxifen does not guarantee anything except that  it "may" reduce having the cancer to come back and that for sure it will have its own side effects. So here I am asking myself, why on earth should I take a drug that is guaranteed to introduce horrible side effects to my health (including the possibility of causing cancer itself) in the interest of the "possibility" of "reducing" the risk of cancer not reoccuring?  

Per its description: A report in September 2009 from Health and Human Services' Agency for Healthcare Research and Quality suggests that tamoxifen, raloxifene, and tibolone used to treat breast cancer significantly reduce invasive breast cancer in midlife and older women, but also increase the risk of adverse side effects.

I am not midlife nor an older woman!! I do not have breasts either anymore to worry about getting invasive breast cancer. So I am just trying to understand the logic as why I should take a drug that is guaranteed to have adverse side effects for a woman of my age, and yet can not guarnatee of suppressing cancer completely.  i just do not understand.. dont know... simply simply dont know.. 

I believe in simplicity. We have come to believe in having quick fixes to the problems without understanding why such problems come to exist to begin with. We have to take care of our bodies and most often we forget as what does "taking care of" mean. Taking care means, having a strong healthy nutrition, having no stress (or not so much of it). And doing exercise. Simple things that have come to be forgotten or overlooked.

I was at Costco a couple of days ago as my friend took me to buy organic carrots. As I walked around with my 4 drains attached to me, I stopped and noticed that every where I looked, they were giving away food samples in the hopes of selling more of them. These food were nothing but artificial perservastives, processed food, and sugar, and god knows what hormons and and "other things" they had to make them taste good to fool people in buying them. People were just taking them without realizing how harmful those things were  to their health. It is like taking poison without realizing it. I was like that prior to my situation. And now I realize, how foolish we can be when it comes to our own health. I have now turned to a total vegan, healthy food, no animal bi-product (including no meat, no chicken, no fish). Nutrition is the key far more effective than any chemical based drug.

Cancer does not happen by itself. There is a cause. Given the drastic increase in the number of cancer cases (especially breast cancer), I am really not surprised. What else can we possibly expect? Junk food is all over, we take them and then expect having a healthy life?? And then... when we run into health problems, we seek quick fixes through drugs such as Tamoxifen which introduce even more horrible things to our bodies - and it then becomes a vicious cycle with getting more and more drugs to have quick fixes to the side effects and/or issues we come to face - that otherwise would not have happened (or at the minimum reducing the risks) had we followed a healthy life style.

mllethani68

@panchoandle ...., just a few words after your post on tamo ...., I' m one that has had a horror story on that drug ..., and let me say that nobody can judge what we are experiencing on that ,, and the side effects can be very awful, and even if we would want to take it , we just cant !!!!! I' m only 44 and have an oncotype of 14 !! Decided to go on Dim and Calcium D glucarate , the natural way !!! And no side effects

Everybody has different experiences , lets respect that ,,,,!!!