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Cancer: Uterine Message Board
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Old 11-02-2011, 03:39 PM   #1
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Angry Frustrated and Confused!

Hello everyone! I'm so frustrated with my doctor and I'm hoping someone will be able to share some information with me. I'll try to briefly explain my situation...I take Tamoxifen for breast cancer prevention because I'm very high risk. Two and a half years ago my gyno did a uterine biopsy because of the risk of uterine cancer with Tamoxifen. The report said the sample was not big enough to analyze. Because I wasn't having any symptoms and had only been on Tamox for 6 months I decided not to worry about it. Several months ago I started having what I consider abnormal bleeding (light, pink, watery fluid...not really blood). It lasts about 4 days and has no regularity to when it happens. I should mention I am 49 and my last real period was last April. I went to the doctor for the abnormal bleeding and she did another uterine biopsy which came back AGAIN as inconclusive because there was not enough tissue provided. I also had a transvag us which showed two fibroids, a cyst on the right ovary and thickened uterine lining. We decided not to do another biopsy, but wait three months and do another us to see if things changed. Here's where my frustration really comes in. I had the us and the tech told me she could not tell how thick the lining was. She said because my uterus was tipped she could not get the wand in the right spot to get a reading, but that she was going to put about "6" in the report to the doctor. She told me, "this is just a total guess, I really have no idea how thick the lining is." So, the doctor calls and leaves a message telling me the report shows my lining is thinning (it was 9.98 before) so all is well. The tech didn't say anything to the doctor about the fact that she couldn't actually get a reading. Does it seem realistic that the lining could change from 9.98 to 6 in 3 months? I called the doctor back and spoke with the medical assistant who told me I would just have to schedule an appointment to come in and speak with the doctor, that she would not call me back a second time! Has anyone else ever had this happen...where they couldn't get an accurate reading on the lining? Is it odd that both biopsies were inconclusive AND the us couldn't get a reading? It just seems so odd to me that they can't get any definitive info on my body and I'm just curious if anyone else has been through this. I have been going to this doctor for more than 10 years and have always found her to be very competent. I'm still having the abnormal bleeding, am bloated most of the time and have had to buy a larger size pants to fit around my waist although my scale tells me I have not gained any weight. I'm quite concerned about the cancer aspect and am just wondering if anyone else has had any of my experiences or if anyone has any words of wisdom to share. I do have an appointment scheduled for the 14th and am furious that I have to take the time to go to her office just for her to schedule another test! In all honesty, I'd really like to just have it all taken out so I don't have to worry about it anymore.

I'm sorry to sound like a whiner...I appreciate any and all comments!

Tinamarie

 
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Old 11-09-2011, 08:52 PM   #2
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Re: Frustrated and Confused!

Taking Tamoxifen as prevention is pretty radical. Guess you must be in the high risk category for breast cancer. However, if things began to bother your uterus, you may want to talk to the GP and stop this drug for a while. Ask the doctor about it. Safer than sorry since they said that Tamoxifen can cause uterus cancer... I am worried about your bloating.
I got that when I had cancer in 2000. I think you may want to stop the drug first but do talk to the doctor about the plus and minus... I mean, if you get uterus cancer, why take tamoxifen to complicate things?
I am really sorry about what happened. I think you really need to be cautious about the whole thing. Sit down with your doctor/GP and discuss the whole thing and tell them about your fear. I don't like the way you are bloating - this means there may be some growth there. And it is the size issue - the bigger it is, the more you bloat.

Please see a doctor ASAP and discuss the issue regarding the drug tamoxifen.

Take care,
Nina

Last edited by ninamarc; 11-09-2011 at 08:53 PM.

 
Old 11-17-2011, 02:13 PM   #3
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Re: Frustrated and Confused!

Sweetie get yourself to another doctor and fast! There is absolutely NO reason for two biopsies not enough sample. You need confirmation now. Uterine cancer is easier to deal with in early stages, it generally does not form tumors but results in a thickened uterine wall. I am dealing with the same thing, just vague guesses, but now I have an aggressive Oncologist Gynecologist who is very technical, but he is on the track what happened, and hun, your symptoms are 100% indicative of cancer. I do not want to scare you, but we women are the worst, when it comes to taking care of ourselves. Think of it this way, if it was your child, your husband, your mom, anyone that you care about, that kept getting the run-around, what would you tell them? I bet you would tell them do not wait another 3 months, get an answer, this week! And you are DUE an answer dear, either a Yes, it is present, or No, we confirmed it is not. After all you have already been through.

If it's ok, I will keep you in my thoughts, thinking positive, and please, do not delay.

 
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