Victim of Tamoxifen

lindaprocopio said:

See if you can get Da Vinci surgery for hysterectomy
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.

See if you can get Da Vinci surgery for hysterectomy
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

kkstef said:

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

Karen
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!

pgrace35 said:

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.

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

I wish you all the best - Mary Ann

Tamoxifen benefits
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 said:

Diane,
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

Tamoxifen
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 said:

Tamoxifen and UPSC
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

Debate Continues due to lack of research
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

Songflower said:

Hysterectomy and uterine cancer and tamoxifen (Upsofloating)
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

Although this retrospective
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

tamoxifen causes cancer

I am a 8 year breast cancer survivor.  I was on tamoxifen 8 years they extended the 5 years to another 5 years.  I woke up one morning in a pool of blood it continuously flowed.  Ended up in the emergency room.  Got a ultrasound my endometrial lining was very thick.  I had fluid around it with a cyst in my left ovary.  Tell signs Uterus is very large fibroids.  I'm an ultrasound tech so I understand.  I had a pap smear show evidence of malignancy.  Just had a D n C done.  Hysterscopy was performed as well.  Spoke with my oncologist and asked her why she didnt tell me the chances cancer would develop somewhere else.  I took myself tamoxifen.  After speaking with her she told me stop taking it and asked if I had a port.  Yeah for chemo treatments.  I once worked for this practise.  I will not be going back to her for care.  People thaty are making money and it keeps us coming back for expensive treatments and medicines.  For years for most Breast cancer patients taking this drug have had problems with Uterine or cervical cancer taking the tamoxifen for pro long periods of time. NO ONE SHOULD TAKE TAMOXIFEN EVER NOT UNLESS YOU WANT CANCER.

upsofloating said:

Tamoxifen and UPSC
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

DO NOT TAKE TAMOXIFEN

NOT UNLESS YOU WANT CANCER IN THE CERVIX OR UTERUS.  I'm experiencing it now.  cervical malignancy due to tamoxifen if I can help somebody not to start this drug i would happy