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Tamoxifen & Uterine Cancer

shamrockyyz
Posts: 4
Joined: Dec 2004

I am a 39 yr old breast cancer survivor (July'03)from Toronto, Canada - I was stage 1, node negative invasive ductal carcinoma. I had no family history of cancer on either parent's side and yet it still managed to find me. I had 2 surgeries and 5 weeks of radiation in 2003. I was on tamoxifen for 9 months (Sep03 to Jun04) to help reduce my chance of recurrence. With my family doctor and my oncologist's approval, I went off tamoxifen in June 04 because of the awful side effects it was causing. Nine months after stopping tamoxifen (Mar05), I have been told I have a 1 cm cyst (along with quite a few other smaller ones) in the myometrium layer of my uterus, thickening of the lining of the uterus and the u/s results are suggesting that I may have adenomyosis. My monthly cycle has been awful for the past few months with painful cramps, pelvic pain and almost daily,irregular bleeding. It has definitely been an unwelcome guest in my life and has been causing havoc for me in the bedroom (thank god for a very understanding and supportive boyfriend).

My GP got me a quick referral to a gynecologist this week. Unfortunately, I was not impressed with his non-chalant approach to my concerns. We had a 10 minute "chat" and a 10 minute examination only to have him tell me to get some blood work done and "monitor" it for the next 6 weeks. He discussed briefly my "options" if it does not get better. I've already put up with my period, the painful cramps, pelvic pain and the daily spotting since the end of Feb (it's now Apr 13) - and now he wants me to "wait" and see until June 2nd (my next app't with him). In addition to those symptoms, I've also had aches up my spine (painful to touch the area), other back pain (unrelated to the cramps) and sore ribs. Basically, at times, it feels as though someone hit me with a baseball bat.

I will be asking my GP for a second opinion (to a female gyn) as alot of what I have read on this site and other reputable cancer websites seem to point to uterine cancer. I also know that having a history of BC means I am more at risk for uterine (endometrial) cancer and when I read the signs/symptoms of uterine cancer, they are very close to what I've been experiencing. Taking the Tamoxifen for even the 9 months does not help the cause either.

I'm wondering if anyone else out there has experienced the same problems after being on tamoxifen and, if so, what the outcome was. For obvious reasons, I am quite worried that I may be facing a new challenge all over again - all because of a drug that was supposed to help me beat one form of cancer but may have given me a new one?

Any feedback would be greatly appreciated as I am trying to deal with this latest "bump in the road".

God Bless.

groundeffect
Posts: 651
Joined: Mar 2003

A friend of mine had a similar breast cancer experience, with the tamoxifen, in the summer of '02. Early in '03, her ob/gyn (who is coincidentally the same one I go to) suspected she had ovarian cancer because of masses in her abdomen and symptoms. I had been diagnosed with uterine cancer (staged 1b) in the fall of '02, and was discovered to have ovarian cancer (1c) when I had a hysterectomy. I was still going through chemotherapy when my friend approached me with questions about my experience.

Now that I have put a bit of history in here, let me suggest that you pursue having a color doppler vaginal ultrasound. I had a regular vaginal ultrasound, and a cat scan that did not show either of the cancers. I had very bad bleeding, and deep vein thrombosis (DVT) that caused a pulmonary embolism. I have since learned that DVT can be a symptom of lower body cancers.

I went to a seminar which featured Dr. Patricia Murphy, who was largely responsible for finding the breast cancer gene. During that seminar, she talked about color doppler ultrasound, and how useful they are to detect cancer with. They show a tumor as a "hot spot", because they draw more blood than the surrounding tissue.

Please pursue getting a satisfactory diagnosis. You might want to pick up Fran Drescher's book about her uterine cancer experience ("Cancer, Shmancer") to see what she went through getting diagnosed-it seems to me she was your age when she first started having symptoms.

The friend I mentioned was 46 when she was diagnosed; I was 48. My doctors kept saying that I as "so young" to have ovarian cancer, and I've met a number of women who were younger when they were diagnosed.

Please email me through this site if you have any questions you'd like me to answer off the board. I appreciate your concern, and would like to help you in any way I can. Women's concerns are very frequently dismissed as trivial, especially by male doctors!

shamrockyyz
Posts: 4
Joined: Dec 2004

Thanks so much for the quick reply. Your information is really helpful to me and I will definitely look into the color doppler vaginal u/s. I only know mine was called a transvaginal ultrasound but I don't recall it being referred to as "color doppler".

Did you experience any of the symptoms before you were diagnosed with uterine cancer (the irregular bleeding, pelvic pain, awful cramps, back pain?). How long was your friend on tamoxifen before the ovarian cancer showed up?

I truly appreciate the support you have shown me. My gut is almost always right and my gut is telling me I need to get this dealt with sooner than later.

I will watch for your reply and will keep you posted. Thanks so much for caring enough to reply. God bless you and your friend.

groundeffect
Posts: 651
Joined: Mar 2003

I had a regular black & white transvaginal ultrasound, and when I heard the difference between that and the color doppler, I wondered if the cancers I had would have showed!

My friend was still taking tamoxifen until just before her surgery, I believe. I'll ask her and will write back if I'm wrong.

The ultrasound I had did show fibroid tumors, which I had before. I accepted that the awful bleeding, cramping, and bloating might have been caused by the fibroids. It wasn't until I was hospitalized with a pulmonary embolism that my ob/gyn decided I needed to have a uterine biopsy right away. She did a uterine "mini-biopsy". It wasn't the most pleasant thing, but was tolerable without anesthetic. It's something that a doctor can do in a regular office. It would not be out of place to ask a gynecologist to do one for you.

The other symptoms I had were a swollen leg (from the DVT), and lethargy. My red blood cell count was very low from the excessive bleeding when I went into the hospital. I had a week between that hospital stay and the next one for my hysterectomy.

I always thought that my family was a healthy crew, until I was diagnosed with cancer. Then I found out that an aunt, cousin, and second cousin all had various "female" and colon cancers.

Fran Drescher's book is a fairly quick read, and you might want to skip a bit of the personal stuff, as I did.

Thank you for the blessings. My friend and I are doing well, and see each other bowling (that's where we met). It's a wonderful thing to realize that you can resume life as normal after battling the big "C"!

MoeKay
Posts: 63
Joined: Feb 2004

I am a six-year endometrial cancer (EC) survivor. The only way EC can be definitively diagnosed is through biopsy, either D&C or endobiopsy. It would, however, only sample the myometrium where EC develops, not the underlying myometrium or muscle wall of the uterus.

Does the Canadian health care system permit you to go directly to a gynecologic oncologist? With your breast cancer history, tamoxifen use, and current symptoms, I would want to be dealing with a gyn-onc rather than a generalist gynecologist. Gyn-oncs receive several extra years of training in all aspects of treatment of women's gynecologic cancers and precancerous conditions. I had my surgery performed by a highly-experienced, board certified gyn-onc and had an excellent outcome.

I would not want to be taking a "wait and see" approach if I were in your shoes. I hope you are able to get some answers about your current situation quickly.

Best of luck to you.

Take care,

MoeKay

shamrockyyz
Posts: 4
Joined: Dec 2004

Thanks for your reply, MoeKay. I'm pretty sure I can ask to see any kind of medical professional so I will ask my family doctor on Monday about a referral to a female gyn oncologist. Thank you so much for that info. I agree about not wanting to "wait and see". It's been such an intrusion on my life already (the current symptoms) and I want answers so I know exactly what I'm dealing with. If it is cancer, then I want to be proactive in dealing with it using every possible means at my disposal. The Canadian healthcare system is great that way but the waiting period to see any specialist is usually very long - unless you happen to have connections in the medical field. I actually do have a few local connections (via my sister's husband's family) so I may call on those to help me get seen faster. It's awful that we have to resort to using connections but if they are going to help me get seen faster so we can get the answers we need, I'm going to do it. I plan on living a good long life in this world and I'm not about to let cancer (if that's what this is) cut my life short just because I was content to sit back and wait to see a specialist. My family doctor is the only one I trust - she is always very proactive (as she was with my breast cancer) so I'm sure she will support my request.

I truly appreciate your kindness. I will keep you posted.

P.S. Just curious - were you seen by a male or female gyn oncologist?

shamrockyyz
Posts: 4
Joined: Dec 2004

P.S. Congratulations, MoeKay, on your 6 years survival from EC. I am nearing my 2 years for BC in Aug05 - still monitoring everything at this point but glad to be a survivor.

MoeKay
Posts: 63
Joined: Feb 2004

Hi, Shamrockyyz,

I first need to correct a typographical error in my earlier post to you. I should have said in my post that an endobiopsy or D&C would only sample the "endometrium" or lining of the uterus, where endometrial cancer develops, not "myometrium," which is the underlying muscle wall of the uterus.

My gyn-onc is a male and I like him very much. We have similar personality styles, so that helps make communicating with him very easy. I have a number of specialists, as I would imagine you probably do also, since having been diagnosed with cancer. Some of them are women and some are men, but I am very satisfied with all of my current physicians.

I did have to "fire" one male primary physician because after I was diagnosed with cancer, he no longer was meeting my needs. I just learned that my current primary physician is moving out of state, so I'm in the process of finding a new one.

I hope that you are able to get in to see a gyn-onc quickly. It's amazing how proactive and assertive we become after receiving one cancer diagnosis! We learn real fast how important early diagnosis and optimal treatment are where issues of cancer are concerned.

Take care,

MoeKay

cookcathy
Posts: 7
Joined: Aug 2005

I did not have breast cancer first, I was diagnosed recently with endometrial cancer. My symptoms were very similar to yours. I had a period from Feb. 25 until a D&C June 1. My periods were HORRIBLE, with flooding, terrible cramping and absolutely no contact with my husband for months. Thank goodness a wonderful female gynecologist decided right off to do a vaginal sonogram to check for the thickness of my endometrium. June 24 I had a complete hysterectomy and am currently under treatment. Please get a 2nd opinion. I have heard of problems with tamoxifen.
I wish you luck.

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