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Victim of Tamoxifen

New Flower
Posts: 3944
Joined: Aug 2009

Hello Ladies,
I am from a Breast Cancer Board and currently have been taking Tamoxifen.
We are having non-stop discussion at our board about weather or not benefits of Tamoxifen overweight its risks.
Claudia from your group suggested to ask direct question:are there any victims of Tamoxifen?
Any thoughts will be appreciated.
I will pass your comments to BC sisters.

Thank you in advance
New Flower

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I had breast cancer ten years ago and took tamoxifen for five years. (Faithfully, through hot flashes and insomnia). Four years after taking tamoxifen I had endometroid and serous uterine cancer. Treatment was rough for me; I have a reaction to taxol. I would not take tamoxifen unless I had a hysterectomy. some studies have also shown an increase in ovarian cancer. I havae no family history of uterine cancer. I beat breast but it gave me an even more agressive cancer. It's been a hard pill to swallow.

Diane

New Flower
Posts: 3944
Joined: Aug 2009

Diane,
Thank you very much.
I am very sorry and understand the horror of your experience.
I would like to ask you specific questions. I can do it via privet message or on the board. Please let me know which way do you like.
Were you under care of gynecologist during your first 4 years on Tamoxifen?
How you uterine cancer was detected?
I really appreciate your advise and time.
New Flower

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

I was taking Tamoxifen for a year for DCIS breast cancer and was then diagnosed with Stage 3C Uterine Papillary Serous Carcinoma probably from the Tamoxifen. I was under an oncologist's care but was not tested for the UPSC. I had severe bleeding one night, was biopsied and found out about the second cancer. I am glad your group is exploring this. I think anyone taking Tamoxifen should know about the possible consequences. I am not saying whether you should take it or not, but I really think that anyone taking it should be closely monitored for endometrial cancers- I was not.
Barbara

deanna14
Posts: 733
Joined: Oct 2008

I think every woman who takes Tamoxifen should warned of the risk for other cancers. I would hope this is a routine part of the teaching for a women who take it. Then, they should be given the option of having a hysterectomy!

New Flower
Posts: 3944
Joined: Aug 2009

you ladies make a good suggestionWe have discussed this option at our breast cancer board and found out that most oncologists do not recommend having a hysterectomy to their patients, even postmenopausal women can have estrogen positive breast cancer,
I am under care of gynecologist who does ultrasound every 4 month. Am I still at risk?
Thank you for responses
New Flower

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I was under the care of a gynecologist. My oncologist and gynecologist would ask if I had any bleeding as I was menopausal after chemo at age 49. No on suggested every four monthly ultrasounds. I had breast cancer Dec of 1999 and am in research study B27. Started Tamoxifen in 1999 as part of the study. I had a D and C in 2004 and had negative findings with two polyps negative. Then I started bleeding during exercise in Feb of 2009 and have been diagnosed with endometriod and serous. I don't think tamoxifen women realize they can get serous which is very agressive. Endometriod is treated curatively with simple hysterectomy for most women. I don't think serous can be diagnosed with ultrasound. If I had it to do over again I would have had complete hysterectomy. They are working on a protein blood test to diagnose serous. I think you are at less risk if you are still menstruating. Remember, I developed this almost five years after I completed tamoxifen. It tends to occur in a thin uterus. Did the D and C trigger it in 2004? I wonder sometimes if there was a bit of of serous in the polyp they missed. I felt safe but wasn't. I did have several negative uterine biopsies; all negative. I disagree with the gynecologist and oncologists; if you are giving women a drug that can cause another cancer and there is a simple way to prevent this with hysterectomy then women should be offered this. I also think our statistics are poor regarding the number of women who get uterine cancer from tamoxifen. I believe it is higher; it is higher in other countries. We need better stats.
If you want me to join in your discussion group I will. Tell me where and how to go. I don't think enough breast cancer women realize the different types of uterine cancer and what they are really at risk for. Just think, one hysterectomy, no more worries. I know this is hard if you want to have more children. I never did so would have been happy to have hysterectomy. I also don't think the insurance companies want to pay for it. Oncologists don't want to prolong the treatment. I think the cards should be laid on the table and we make our own choices.

Diane

New Flower
Posts: 3944
Joined: Aug 2009

for your complete answer. I do not know what to do now. My oncologist want me to switch from Tamoxifen to Arimidex.
Arimidex is aromatase inhibitor and has its own side effects as well. Being 9 months on Tamoxifen and talking to you and others make me more decisive. I will post link to your answer on breast cancer board.
Thanks again

marywest's picture
marywest
Posts: 135
Joined: Sep 2009

Diane I so appreciated reading what you had to say. My doctor put me on arimidex, made me hurt so bad I threw them away, two months later I saw my oncologist, (last week) she wants me to take tamoxifen, I have been posting quesitons on it, of coarse none of us want cancer to return but dang it, these pills can cause harm. I am 58 and still have everything intact, wondering if I should consider a hysterecomy? If I had one does that mean I wouldnt' need to take tamoxifen and chances could possibly be better of cancer not returning? I re-act bad to almost every kind of pill there is and I am so skeptical about tamoxifen. I really would like to see the stats also regarding women taking it and how many had cancer return. Once again I appreciate your post, sorry you had to go through all that crap, am praying you stay healthy. I want more answers regarding this drug. Hmmm you got my mind thinking, thankyou so much.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

For these women who took Tamoxifen, it did probably help keep their BREAST cancer from recurring. But the uterine cancer they got is a whole DIFFERENT cancer, not a recurrance of breast cancer that showed up elsewhere. That's the scary part, but also why getting a hysterectomy so that you DON'T get uterine cancer, and THEN taking the tamoxifen to keep your breast cancer from recurring, may be your best strategy. The rare types of uterine cancer that tamoxifen seems to encourage are Grade 3 aggressive cancers. I'm sure the percentage of women who get uterine cancer after taking tamoxifen is low, but it would be good to find out what that percantage is.

marywest's picture
marywest
Posts: 135
Joined: Sep 2009

Having a hysterctomy and taking tamoxifen might just be my ticket. At 58 I have no plans for more children, but then again if I did I could become rich by being the oldest woman to have children. Boy I so appreciate any input on this. I am going out of country the mid of jan and my doctor told me not to go on tamoxifen until i get back so she can inform me more about and monitor me. I am blessed to have her for my doctor. I return the mid of feb, then will go see her and find out her thoughts on a hysterectomy. Thank you Linda

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

A hysterectomy is MAJOR surgery, I won't kid you about that. But if you can get da Vinci robotic surgery for your hysterectomy the scarring is minimal and the recovery time is faster and less painful. Not everyone is a candidate, but it's worth shooting for if you can. Best wishes on this difficult decision.

I may be visiting you ladies on the breast cancer board. I have a recurrance of my uterine cancer and part of it is a malignant swollen lymph node in my left armpit. I keep wondering where my cancer is trying to get to from there, and the breast is my uneducated guess. Hope not.

deanna14
Posts: 733
Joined: Oct 2008

Hi Linda,
My mother had uterine cancer in 1994 and breast cancer about 7 years ago. When she was diagnosed with the breast cancer, we asked if it was in any way related to the previous uterine cancer. We were told at that time (long time ago in terms of cancer research), that typically uterine cancer does not mets to the breast. Not sure it this is the case with your axillary lymph node.
Also wanted to let you know you will be in my thoughts tomorrow as you begin the chemo journey again. Know that I will be holding your hand in spirit! Love and hugs!!!

marywest's picture
marywest
Posts: 135
Joined: Sep 2009

My heart goes out to you, when I hear about cancer reoucurring I want to reach through this internet and make it go away for you, it tugs at my heart for you. I hope you dont' wind up joining us at the BC site, meaning you wont' have it. I am praying now for you, I can imagaine the thoughts running through your heart. thank you again for the advise and beleive I am considering it. In the meantime, your on my heart more than anything. Love is sent your way.

New Flower
Posts: 3944
Joined: Aug 2009

I am so glad that California Artist suggested having inter-board discussion.
I will be posting link on our breast cancer board.
If you ladies have any questions, please visit ua at Breast Cancer Board.
Than you very much.
New Flower

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

I had the Da Vinci surgery...much easier than the traditional if you can get it.

Linda sending you positive vibes that Lymph Node settles down...Have you been told it is malignant???

Laurie

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Thank you for sharing your story Diane. Mine is uncannily similar. I had a breast cancer recurrence (local) 6 years after mastectomy/chemo. I was put on Tamoxifen and my doctor encouraged me to continue taking beyond 5 years "since I was doing so well." At 6 1/2 years I had sudden episodes of major uterine bleeding and underwent a D&C. Multiple polyps were found and most removed but was told no cancer found. I changed to Femara and consulted with a gyn who suggested uterine ablation or a variety of surgical options (hysterectomy). All bleeding had resolved, I was feeling fine, so with no real imperative except to keep from having further bleeding, newly remarried, I passed on such a surgery. 1 1/2 years later my appendectomy turned out to be UPSC. My onc insisted this was not related to Tamoxifen. I had extensive surgery and chemo first half of '08 and now have recurrence in lymph nodes. I'm weighing repeat of chemo. I initially had PET scan in Feb 09 showed enlarged lymph nodes along with ca 125 elevated, 4 months later nodes were shrinking and CA125 back to normal. Three months later, new enlarged lymph nodes, biopsy found UPSC. That was three months ago and recent CT showed they are unchanged.

The possible Tamoxifen connection has continued to nag at me. No primary was found for UPSC at surgery and is possible it was 'missed' when I had my D&C. It is difficult to know who to believe.
Annette

New Flower
Posts: 3944
Joined: Aug 2009

Thank you for sharing your story.
I am very sorry for your health conditions,
Being diagnosed with Stage IIIC in June 2008 at the age of 46, I am still recovering after treatments. My breast cancer was a ER+ so after Chemo and Radiation I have been on Tamoxifen for 9 months now.
I have several questions to you and will greatly appreciate if you find time to answer.
Being a BC survivor for 8 years prior to UPSC what are you thoughts on treatments for estrogen dependent high risk patients?
At what age were you initially diagnosed with breast cancer and what was your treatment first time before recurrence 8 years ago.
Thank you in advance,
New Flower

tjhay's picture
tjhay
Posts: 655
Joined: Oct 2008

Thank you for sharing your experince ladies, I have been on tomox for about 5 months and my girlfriend has been against it from the start. You have given us some very good questions to ask my gyn next month.
Please feel free to visit us at the breast cancer board if for no other reason then to say hi. After all we are sisters in the fight against the beast and its many forms.
tj

california_artist
Posts: 850
Joined: Jan 2009

uterine cancer is a "side effect". Thought some of you might want to write to them the things you've written here. I was so mad I thought I was going to spit. I wrote a very long letter, only to find out it has to be less than 150 words, unless you choose to write an article and not a rebuttle to an article and then it can be any almost any - number of words. I think the mention of uterine cancer as a bothersome side effect really set me off this world with indignation.

Here's the article:

The article:
December 14, 2009, 5:04 pm
When Lowering the Odds of Cancer Isn’t Enough
By TARA PARKER-POPE

If someone invented a pill to cut a cancer risk in half, would you take it?
Who wouldn’t?
Apparently the answer is millions of women — people like Cindy Birkhold of Sarasota, Fla.
The pill is tamoxifen, and Ms. Birkhold, now 52, was considered an ideal candidate for it: she tested positive for a breast cancer gene, her mother had ovarian cancer, and her aunt had breast cancer. Yet rather than take tamoxifen, she opted for surgery to remove her breasts and ovaries.
“I even went so far as to get the prescription” for tamoxifen, she said. “But then I started reading more and decided this isn’t the way I’m going to go. I don’t like to take drugs.”
Such decisions have become a topic of growing concern among doctors and researchers, who are increasingly focused on treatments to prevent cancer in high-risk patients.
While many kinds of cancer are resistant to such treatments, tamoxifen is well documented to prevent breast cancer in many women at high risk for it. Now another drug, raloxifene, has been shown to have a similar effect, and a class of drugs called aromatase inhibitors may also be useful. And for men, finasteride has been shown to lower the risk of prostate cancer.
But none of these new chemoprevention drugs will do any good if patients do not use them. University of Michigan set out to learn why they don’t.
A woman is considered to be at high risk for breast cancer if she is over 40 and has a mother, sister or daughter with the disease, or has a history of atypical cells on a breast biopsy. Tamoxifen lowers a woman’s risk for developing breast cancer by interfering with the activity of estrogen in the body.
The researchers looked at 632 women whose five-year risk for breast cancer made them candidates for the drug. To find out whether the problem was one of information, the scientists created a detailed Internet-based decision tool tailored to each woman’s individual risk.
For instance, a 52-year-old woman who had her first child after age 30, and whose own mother had breast cancer, has a five-year risk of 1.9 percent, according to the Gail risk score, a widely accepted statistical model. That means among 1,000 similar women, 19 would be expected to develop breast cancer over the next five years.
If those women all took tamoxifen, however, 9 of those women would avoid breast cancer — and, as a bonus, 13 would avoid broken bones from osteoporosis.
It is true that tamoxifen can have side effects, some of them serious. Among 1,000 similar 52-year-old women, the drug would be expected to cause 21 additional cases of endometrial cancer, a cancer of the uterine lining that is typically treatable when caught early. An additional 21 would develop blood clots, 31 would develop cataracts and 12 would develop sexual problems. And while more than half of the 1,000 women would naturally develop hormonal symptoms like hot flashes, changes in vaginal discharge or irregular periods, tamoxifen would cause those symptoms in about an additional 120 women.
While these risks are not to be taken lightly, neither are the risks of failing to use tamoxifen; its benefits for breast and bone are substantial. Yet virtually every woman in the study said she would be unlikely to take the drug. Just 6 percent said they would consider it after talking to their doctors, and only 1 percent reported actually filling a prescription for it. Fully 80 percent cited worries about side effects.
“When the numbers were laid out for them in a way they could clearly understand, they weren’t interested in taking tamoxifen,” said Angela Fagerlin, associate professor of internal medicine at the University of Michigan and the lead author of the study, published in the journal Breast Cancer Research and Treatment. “They didn’t think the benefits of tamoxifen outweighed the risks.”
Dr. Fagerlin has also conducted a study of women and raloxifene, which has been shown to significantly reduce breast cancer risk but with fewer side effects. Although the data has not yet been published, she said the findings appeared to be similar.
Some women say they simply do not want to take a pill every day. In fact, though, most consumers are willing to take pills for prevention if they are convinced of the benefits. Millions of women take daily birth control pills, for example, and few people seem reluctant to take multivitamins — or aspirin to prevent heart attacks.
But in the case of anticancer drugs, a phenomenon known as omission bias appears to be at work. People tend to worry more about a low risk of harm from something they do (like taking a pill or a vaccine) than about a higher risk of harm from doing nothing.
In a seminal 1994 study of vaccination trends for whooping cough, researchers from the University of Pennsylvania found that parents gave far more credence to hypothetical concerns about side effects than about the very real danger of an unvaccinated child’s becoming severely ill with the disease.
“I think this involves complex human psychology,” said Dr. Larry Norton, deputy physician in chief for breast cancer programs at Memorial Sloan-Kettering Cancer Center in New York. “A number of studies have shown that people are more concerned about losing something than they are about gaining something.”
Dr. Norton said he was optimistic that new research into aromatase inhibitors, which lower the amount of estrogen in the body, would lead to new prevention options with less bothersome side effects. Meanwhile, he said, it was unlikely that large numbers of healthy women would ever be persuaded to take tamoxifen as a breast cancer prevention drug.
“It’s not a matter of being right or wrong; it’s about what’s happening now,” he said. “The drug has been available for a long period of time, and the public is as educated as it can be, and we still haven’t seen a great use of the drug.”
Tamoxifen was discovered by ICI Pharmaceuticals[2] (now AstraZeneca) and is sold under the trade names Nolvadex, Istubal, and Valodex. However, the drug, even before its patent expiration, was and still is widely referred to by its generic name "tamoxifen

Imagine what you are going through is considered a "bothersome side effect".
and apparently, you all need to have your heads examined if you think there is any reason you should not take tamoxifen.

New Flower
Posts: 3944
Joined: Aug 2009

probably pushing issue of Tamoxifen to the extreme. While Tamoxifen is a generic drug, alternatives such as Femara, Arimidex, Aromatisin are brand names, more expensive manufactured by Novartis, Astra Zeneca, and Pfizer respectively.
The question is still open: How would you treat estrogen dependent cancers?
Why osteoporosis (50%) from aromatase inhibitors/brand name drugs is more preferable than UPSC(1%).

mizcaldwell's picture
mizcaldwell
Posts: 143
Joined: Oct 2009

I'll have to search to find out where I read it, but there was a study done on women who had hysterectomies (including ovaries)to avoid tamoxifen as opposed to women who took tomaxifen. The study findings showed that although the women who had the hysterectomies were less likely to have a recurrence of breast cancer - they had a higher death rate from heart problems and other cancers - so more women were dead at the end of the study that had the hysterecomty and didn't take tamoxifen than those that took the tomaxifen. . .

Like I said - I'll have to see if I can find the article. It was online - and at the time I didn't check sources, etc.

You know - it is a "damned if you do, damned if you don't" kind of scenario we are faced with! The doctors quote the percentiles of things and percentages - but if you fall into that 1% or 12% or whatever it is - which people must to get the statistics - it bites!

God bless you in your fight! I agree with the other ladies from the BC board - check in and share your story with others. It is good to hear all sides of the discussion.

Lori

pgrace35's picture
pgrace35
Posts: 122
Joined: Nov 2009

First off I want to say I'm sorry for all that you have been through. Getting through breast cancer is enough. I have breast cance, just finished chemo and will be doing radiation the first of the year, I have made my decision not to take tamoxifen for the numerous side effects I have heard from other women's posts. I have also decided, not recommended by my oncologist to have a full hysterectomy, she just recommends my ovaries only, but wants me to take tamoxifen. Never did she mention the risk of cancer in the uterus with this drug, I asked her. She said the risk was low, regardless of that it should be addressed as you mentioned, along with all the other horrible side effects this drug causes. Regardless if the risk is low, people get it from this drug just like you. We should be given the option to decide for ourselves once given the info. I made this decision because I was afriad that my uterus was just another cancer factory somehow, not realizing it could be from a drug they insist on me taking after my treatment. I have decided to take a homepathic route for blocking my estrogen after my surgery. Thanks so much for you info.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I commend you for your thoughtful decision to opt out of tamoxifen.

I wish you all the best - Mary Ann

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

My mother is in remission from breast cancer and was part of the study with Tamoxifen. So far she seems ok but she hasn't had a PAP in years. I've been after her to get checked for uternine. Not sure of why the ongologist has not given her a PAP. What's ironic is she is high risk for uterine and I'm now high risk for breast. She did make a comment that if cancer reoccured she did not want to go through chemo again.

She goes in Jan for a check up and I'm going to make sure that they check her very throughly.

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Your mother is not at risk of cancer of the cervix from tamoxifen. she is at risk for uterine cancer which cannot be diagnosed with a pap smear. She needs yearly ultrasounds and uterine biopsies. Most often they tell you to wait until you have some irregular bleeding. Serous cancer is very agressive and most women don't realize they can get serous cancer. Endometriod cancer can be cured with hysterectomy if it has not spread to the lymph nodes.

Diane

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Although this is considered the "good" kind of endometrial cancer, it depends on the stage and the Grade and is not so easily cured if it is considered "advanced". I have Stage 3A, Grade11/111 which had invaded clear through the uterine wall and invaded the vascular spaces in the uterus.....so, certainly can be a sobering experience.

I pray that we find better methods of early detection for all types of uterine cancer in order to save lives and improve quality of life for all. It impacts so many women and their families!!

Karen

california_artist
Posts: 850
Joined: Jan 2009

Well, that just breaks my heart and makes me want to read faster.

You know how I'm all about green tea and ginger, sorta like a broken repeat play record, well last night I was reading Anti Cancer A New Way of Life and on page, wait I have to go get the book, I can't locate the exact page, but the message was that the most reliable overall cancer fighters were green tea and resveratrol from grapes and red wine, no mention of ginger, but that's new and not on most scopes right now.

Love you and am grateful for your kind encouraging words. Thanks!

I do wish everyone would read the book and take away what works for them. I have the worst memory as to reasons for things, although I do retain, must do A,B,C etc......

Love you oooooodles,

Claudia

Through the uterine wall and invasion of the vascular spaces, CRAP!!! How are things going? What are those people in the with coats saying? Are you doing any other things??

Get out your medical records and look up your C-RP and Albumin stats. Please email me the results, I'm trying something. claudiaallen27@yahoo.com

Ah, sorry, in the bossy Queen mode. C-RP is an inflammation marker and if you haven't had it done yet, you could ask you doctor it costs less than $20 if your insurance won't cover it.
Inflammation supports cancer's growth, so knowing your number and then doing whatever you can to lower it could make a huge difference. Mine was 9.8 which freaked me out. I asked my doctor for an antibiotic to get rid of an infection if that was a contributing factor. That brought it down to 6.8 which was a lot better but since zero is what we're aiming for still not great. the more I read the more I'm convinced inflammation is the thing to control, it has to do with how cancer takes over. It ofter begins with inflammation or a wound and then takes over that process to continue on out of control.

So, your job is to do these things:

Think often about flippin on the p53 switch, and don't have kind thoughts towards your cancer cells as Patricia has decided to do.
Get your C-RP level and find you Albumin level
Drink green tea and take standardized capsules of EGCG or green tea
Drink grape juice and take standardized capsules of resveratrol
Crush, mince and let stand for 10 minutes garlic, then add it to what you're eating without cooking. This helps stabilize your insulin. Insulin feeds cancer's growth and we don't want that.

there bossy bossy bossy. I'm not a doctor and I don't mean to act like one but now you've gone and worried me.

Stop being sick!

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I want to discuss some of tamoxifen's benefits. I am in B-27 breast and bowel research study. I started on tamoxifen before I went to surgery; I also had chemo before surgery and also took tamoxifen before surgery with chemo. I could feel my tumor and it would burn when my hormone levels were high and the cancer cells would multiply. When I took my tamoxifen the tumor stopped multiplying at a fast rate and I no longer experienced the burning when my estrogen and progesterone were high. It was stopping the tumor from growing. It is a beneficial drug in estrogen positive breast cancer. I know that it is unknown if it is beneficial for two years, five years, etc.

I would take it again if I had breast cancer but only if I could have a hysterectomy to prevent uterine cancer. I don't want to sound like I am against the drug in my writings here. There are many benefits in treating breast cancr with tamoxifen. But it can cause uterine cancer. I would not take it unless I had a hysterectomy.

I also want to say that being in a research group was a really good experience for me. I didn't feel like a "guinea pig" but was proud of my contribution to fighting this disease. Now we have to work on serous uterine cancer. I wish someone had explained to me before I took tamoxifen about the different types of uterine cancer I could get and how agressive some of them could be.

New Flower
Posts: 3944
Joined: Aug 2009

Thank you for clarifying your position. I am glad that you are back to Tamoxifen discussion.
Recently I saw my gynecologist and discuss Tamoxifen issue with him. He does not think that I need to switch medication. He is against hysterectomy. I myself have not been ready for another major surgery yet. Since radical modified mastectomy even I do not have any regrets about my decision, I realized that each organ has its own purpose and helps whole body functioning well. My doc did lining biopsy, it came back negative and i have been continued taking Tamoxifen. It is a very difficult dilemma for me and I have been reading and researching on this subject.
Thank you very much for your responses and involvement in Tamoxifen clinical studies & discussion.
Happy and very healthy New Year!!.
New Flower

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I had many uterine biopsies and even a D and C during my ten years after breast cancer. I know it is difficult to go back and do another surgery but I would do it anyway. I have been completely surprised that my complete hysterectomy has not adversely affected me sexually and my desire is as strong as ever. I have no problems at all with urination. I don't feel any different in these areas and I have had radiation! Perhaps when you are further out from your mastectomy you may consider it. I strongly disagree with your gynecologist.

I think it is worrisome that serous cancer of the uterus is hard to pick up on endometrial biopsy. We certainly need more research in identifying this cancer early. It is more life threatening than breast cancer.

Best wishes in the New Year.

Diane

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Finally back in this discussion... saw my gyn-onc Tues and commented on numbers on this site with breast cancer, Tamoxifen Rx, and subsequent UPSC, as this has been a concern of mine. He is head of Gyn-Onc Dept at UCSD Medical Ctr. Per his discussion, the relationship is breast cancer and UPSC not the Tamoxifen and UPSC. UPSC is tied to ovarian cancer - same behavior, etc., just arises in endometrium instead of ovary. The uterine cancer linked to tamoxifen is a different cancer type. The link is breast cancer, ovarian cancer with UPSC a variant of ovarian, and hence it is treated like ovarian ca.

My original BC (’93) was Stage IIB at diag (4 cm tumore and 2 1 cm. tumors in Rt breast, 6/15 +ve nodes), treated with radical mastectomy, lymph node resection; chemo with Adriamycin and CMF; no radiation ( bad rec.! as recurrence in '99 was local in skin, surrounding implant, and into chest wall muscle). Treatment was add'l surgery, radiation, and Tamoxifen. I've been breast cancer-free since.

I'm now on Femara for another 1-2 years. I definitely felt 'safer' and more in control taking a medication rather than just hoping for the best. Another concern with prophylactic hysterectomy, in order to avoid subsequent cancers, is that the initial cell changes could have occurred already and stray cells could have moved on into the peritoneum, lymph nodes,etc. leaving one feeling safe while this insidious cancer could be chugging quietly along, unbeknownst to anyone. I guess I often feel, "you can run but you cannot hide." So taking the best care of our bodies and keeping as healthy in body and mind as possible is our best defense ... AND our best offense.

I'll be starting Doxil Rx in a couple of weeks if all goes according to plan as para aorta lymph node biopsy in Oct showed UPSC cancer cells. Original UPSC Dx / extensive (incl. splenectomy) surgery Jan '08; chemo Rx only with Carbo & Taxol.
Hang in there and Keep on fighting,
Annette

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I've read several articles that taking tamoxifen actually increases the agressiveness of the endometrial cancer. So one often goes from endometriod to serous. It is an interesting point that hysterectomy may leave behind cells that have all ready metastasized.

I firmly believe we need more research. Serous is similar to serous ovarian cancer but I don't think the mechanism that starts the cells growing is the same. I've read a couple of studies that found high rates of ovarian cancer in women taking tamoxifen too.

More research is needed to help us all. I hope that if health care legislation passes it will enable us to do research faster; wouldn't it really be wonderful to have the real data on the numbers of women taking tamoxifen who get other cancers? We would have a better idea which direction to go.

Annette you have been through so much. My prayers are with you. You are a trooper!

Diane

New Flower
Posts: 3944
Joined: Aug 2009

Thank you for continuing this discussion and answering my questions. I also appreciate that you ask your doctor about connection to TamoxifenI saw my Gyn-Oncologist on Jan5, We discussed Tamoxifen again. He does not think that I should stay away from Tamoxifen due to potential danger of UPSC. So for next 6 months I am going to stay on Tamoxifen. If everything will go well after 2&1/2 years on Tamoxifen my medical oncologist is going to switch me to Arimedex/Femara. I hope new data will be available to improve our future.
Hugs,
New Flower

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I've been thinking about what your Gyn said. He said if you did a hysterectomy and then had floating cells you would think you were safe but really not. If the cancer orginates in the ovaries, tubes or uterus you would find that on pathology. The cells have to come from somewhere. You wouldn't find floating cells without finding some in the Gyn tract first. Also, papillary serous can start from the peritonal wall. I haven't seen any studies where tamoxifen caused that but some believe if your mother took DES it can increase peritoneum cancer. So what your Gyn said to you does not make sense to me. I think the safest thing to do is to have a complete hysterectomy before starting tamoxifen. Chemotherapy is going to throw you into early menopause anyway. To anyone out there, I really believe that is the safest thing to do.

Diane

MoeKay
Posts: 63
Joined: Feb 2004

Although this retrospective study is from 1993, I thought it might be of some interest:

http://jco.ascopubs.org/cgi/content/short/11/3/485

The researchers concluded that "it appears that women receiving tamoxifen as treatment for breast cancer who subsequently develop uterine cancer are at risk for high-grade endometrial cancers that have a poor prognosis." The study looked at two groups of breast cancer survivors who later developed uterine cancer: those who had taken tamoxifen and those who had not.

They state that of those women who later developed uterine cancer, 67% of patients in the tamoxifen group had poorly differentiated endometrioid carcinomas (including adenosquamous carcinoma) or carcinomas associated with poor outcome (eg, uterine papillary serous carcinoma, clear-cell carcinoma, or mixed mullerian tumor), as compared with 24% in the nontreated (no tamoxifen) group.

MoeKay

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Thanks MoeKay -- Reviewed this article - I have yet to find any followup with similar reference. Will keep researching.

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