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BC survivor, uterine concens... BC survivor, uterine concens...

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  #1  
Unread 02-17-2004, 09:20 PM
BC survivor, uterine concens...

Hello,
I am 51, probably perimenopause, have had very heavy periods the last few years and they have been even worse the last year or so. My DR tried to do a biopsy due to very thick uterine lining, my anatomy made it unsuccesful. My lining is now thinner but still too thick, and I have one more new tiny fibriod, 3 total. I also have adenomyoisis. ( sp? )

Now I am suddenly bleeding for 1 day or 6 hours between periods, sometimes I have a watery bloody discharge, sometimes a browish discharge. My DR tried another biopsy after giving me locals so she could manipulate things to get into my uterus, she did get part way in after 20 minutes, GEESH, I really do NOT want to do that again! Who knew you could get shots THERE!!

Since I had BC I am at more risk for uterine and ovarian cancer, I am anemic, and I was just diagnosed with Fibromyalgia.
I just had extensive blood work done to check hormones etc, and am waiting the biopsy results, but I am seriously considering throwing in the towel and having a hysterctomy like my DR wants me to, the heck with worrying about surgical menopause etc. even if biopsy comes back normal. My DR tells me that if we can't find out what is going on with the lining we can't rule out cancer, and I do have some of the symptoms, but they can also be from perimenopause.

Plus the icing on the cake, I traveled out of state and of course my period came, it was VERY akward and worrisome, one day I had 3 overnight pads on and after 2 hours I had a spot of blood on the upper back of my jeans, half way to my waist! I was wearing a long cream shirt, thank goodness it did not bleed through that as well. Then I had to carry so many fresh pads in my purse to last the whole day that I dropped one on my friends bathroom floor and I saw it later and tried to pick it up without any one noticing. I was so embarrassed. They always seem to be falling out of my purse!!I am a home maker so I can usually stay home, if I ever was on an extended airplane trip or such I don't know what I would do.
My DR likes to do the laprascopic surgery and leave the cervix, of course the ovaries must go due to to cancer risk, and I cannot take hormones since my cancer was hormone receptive.

I guess I just want someone to give me some feedback, tell me I am doing the right thing. IF I do this.. of course if the biopsy comes back with anything funny on it, it's a no brainer then,out, out **** spot!!
Thanks for letting me vent, I don't have anyone else that could really understand all this.
Trudy
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  #2  
Unread 02-17-2004, 10:16 PM
BC survivor, uterine concens...

Trudy,

I'm sorry you are having to deal with all of this. I had similar symptoms to yours . . . very heavy, painful periods, bleeding between periods. First, my Dr blamed my symptoms on perimenopause, and when I insisted that something must be wrong, she referred me to a gyn who diagnosed it as fibroids and polyps. I had a D&C to remove them. Came back a few days later with a diagnosis of endometrial cancer. About the same time, a close friend was experiecing similar problems; she was diagnosed with adenomyosis, and had scheduled a hysterectomy. She had hers a week after I had mine, and fortunately, no cancer in her case. Don't think it was suspected, but they always check.

Both of us have dealt with hot flashes, and maybe have both been a bit more moody at times, but neither one of us regrets for one minute that we had the hyst. My life is no longer subject to my period, and I have to say, that is great. I no longer go on vacation with a bag full of pads and tampons, no more terrible cramps that keep me up at night (OK, sometimes the hot flashes do, though), no more worry about "leaking" at work, and keeping a desk drawer full of "supplies", where most of my co-workers are men. I also don't think I realized how much pain I was in . . . was taking ibuprofen practically by the handful, and now, I still have the same 500 pill bottle (almost half full) that I had when I had my hyst--a year and 9 months ago now.

Also, if there is any question about cancer, please get a second opinion from a gynecologic onclolgist. They are the experts in gynecologic cancers.

Take care, and good luck,
Cheryl
  #3  
Unread 02-18-2004, 06:48 AM
BC survivor, uterine concens...

Trudy,
I would not wait.
I hesitate to tell my story because I do not want to put fear into anyone, but I wish I would have found this site years ago and not have been so stubborn.
I was dedicated to going through my menopause naturally. I suffered through three years of very heavy periods, huge clots, but only every 28 days. Perfect cycle with no bleeding in between. Then I started skipping periods.....then nothing.
I thought I had it whipped. Doctors said all the heavy bleeding was just menopause, etc.,etc.
After 11 months of no period, I went for my annual Pap test. Mainly so they could do the FSH level test to see if I was indeed through menopause. I almost didn't go last September, almost went camping instead.
My Pap test showed AGUS......endometrial cells where they shouldn't be.
I had a uterine biopsy that showed cancer.
Within a week I was having a radical hysterectomy with lymph node sampling.
If you have surgery, have a gyn/onc do the surgery. You want them to explore everything in there while they are there!! And especially check the lymph nodes.
My cancer was very teeny, contained within the lining of the uterus, had not gotten into the wall.....it looked like we were in good shape. Until the path report came back with 1 out of 10 nodes showing cancer.

I was staged at IIIC Grade 3.
I have completed external radiation and will be starting chemo next Wednesday.

Please do not let this go four months. If I would have had this done three years ago, chances are I would have needed no further treatment.

The first thing I did when I got home was burn all the natural menopause books that had me convinced I was 'normal'.

we are all here for you!!

Nancy J.
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  #4  
Unread 02-18-2004, 07:05 AM
BC survivor, uterine concens...

Trudy --

The others are right - the symptoms of "peri-menopause" and endometrial/uterine cancer are very similar, but if your doc can't get a sample for a biopsy, there is no way to know for sure, but I am wondering why they are not considering a diagnostic D&C?

Did you (or are you) taking tamoxifin? That is associated with an increase in endometrial cancer, and might tip the scales to action.

If your reason for a hyst is cancer, it seems odd to leave the cervix in (and often the surgery needs to be abdominal as well). If the reason for the hyst is to control bleeding, you might consider other, less invasive techniques first. At 51, if there is no cancer, you may be close to menopause and could avoid major surgery and the loss of your ovaries

Dorrie
  #5  
Unread 02-18-2004, 07:24 AM
BC survivor, uterine concens...

Hello Trudy

I am 48 years old and last summer I started to have extremely heavy periods...eventually bleeding all the time - had an ultrasound and it showed thickening of the endometrium - following that I had a biopsy that resulted in a diagnosis of endometrial cancer. I had an TAH/BSO a week later. I am very fortunate that my biopsy successfully sampled what it needed to...biopsies don't always give you definitive answers. It is possible to sample an area that is clear. If mine had come back negative, I am sure I would have had a D&C because even though I was told that my problems were not unusual for a woman my age, deep down inside I knew that something wasn't right and I needed some answers. When my biopsy came back positive for cancer I was immediately referred to a gynecological oncologist and I'm so thankful I was, as they truly are the experts!

There are a lot of ladies here that have been in your shoes and are here for you!

Take care ~
  #6  
Unread 02-18-2004, 07:51 AM
Opposite of most

Trudy, Fourteen years ago almost to the day, I had TAH / BSO due to fibroids and heavy bleeding. Pathology was done. No cancer was suspected and no cancer was found -- just a little endo. Had no problems with the surgery and no problems during recuperation and in the years since. None. I have no regrets about the surgery. Was very happy to say "so long" to Aunt Flo.

As you can see in my signature, after years of taking Premarin (if that had anything to do with it), in November '02 I was diagnosed with ductal carcinoma in situ. Physically, had easy time of it -- treatment, etc. The worst of it all was and still occasionally is the cancerhead.

Good luck with your decision. I wish everyone who has a hysterectomy could have my experience.

Mary D.
  #7  
Unread 02-18-2004, 10:29 AM
BC survivor, uterine concens...

Hi Trudy,

I had my TAH-BSO in April. I too had breast cancer. I was diagnosed in May of 2001 and went through 6 rounds of CAF. Although my invasive cancer was ER-, part of my normal follow up was an abdominal ultrasound. I never had difficult periods, but with my history of colon cancer and breast cancer, I was in a very high risk group for ovarian and uterine cancer.

Complex ovarian cysts showed up on my ultrasounds, and my GYN/ONC, felt that even though they didn't look overly suspicious, he didn't know what else might be lurking in there. I am pleased and relieved to let you know that they did not find any signs of cancer! The peace of mind that I now have is priceless.

I cannot take HRT either. The only thing I try to do is take calcium and exercise. I get occasional hot flashes, but not enough to disrupt my life. I feel the same as I did before my surgery.

Good luck to you on the decisions you have ahead of you. You are dealing with some tough symptoms and you would definitely have an improved quality of life not needing to worry about the heavy bleeding, anemia and everything that goes along with that. There is even a return to the old school of thought that a good treatment to prevent breast cancer recurrence is the removal of the ovaries.

My thoughts are with you.
  #8  
Unread 02-18-2004, 10:39 PM
BC survivor, uterine concens...

Thank you ALL for responding, I feel so much better hearing from others in same situation.
My nurse practicioner called and the biopsy was NOT successful. All that for nothing. She said my DR recommends a hysterectomy still OR a D and C. I am really leaning toward the hysterectomy. I also had some blood work done to check myn thyroid and hormone levels, when that comes back I will decide, I want to make sure this is not from some other underlying problem.
My breast cancer was DCIS, I did not take Tamoxcifin, or any HRT.
I told my husband and he told me about some article he read where a woman had trouble just like mine and she took some vitamin and everything cleared up.... ummm I don't think he has a clue to what really is going on..... I have not even shared with him all the yucky details of the last year or the last few months.

I should have known... he watched DR Phil one night with this issue being featured and one woman had excruciating pain from cysyts on her ovaries, and her husband did not want her to have surgery. In the end she decided to have a hysterectomy and my husband seemed surprised because OTHER women were able to be helped with OTHER problems with out surgery, I guess he thought she should be able to also. He just did not get it at all.

Thanks again, I am so glad to have this place to come to and talk.
Trudy
  #9  
Unread 02-19-2004, 11:25 AM
BC survivor, uterine concens...

Trudy
Are you seeing or been referred to a gyn / onc..? If not, i highly recommend that you consult with one....It is very important to at least have an onc/gyn with your gyn at the time of surgery in case lymphnodes need to be removed....If they are suspecting a uterine cancer this is so important. There have been ladies on this site that have gone in had their hyst and later had to return to the operating room to have lymphnode sampled because the pathology showed cancer....Also, a gyn onc can take a good look around to check other organs out during surgery.
  #10  
Unread 02-19-2004, 12:57 PM
BC survivor, uterine concens...

Hi,
I am writing about my case so that you can make a choice based on reading diffferent cases. All my life I had very regular periods every 28-30 days. However few years ago my periods started getting longer. Just very light spotting on the 6th day and 7th day.... all of a sudden one month I had very heavy periods with huge clots. I went to my gyn and she gave me birth control pills and I didn't see any improvement after trying a couple of brands for 5 months. I was only 34yrs. at that time. It took more than a year before she did endometrial biopsy( I never even heard of anything like that before, so I didn't even know that I should ask for one.) and it came out positive for endometrial cancer. She referred me to a gyn-onc and he did an MRI. Nothing showed up on the MRI. No invasion of the uterine wall and muscle. However he did a D&C and hysteroscopy. Results came out positive for endometrial cancer. I underwent total hysterectomy. Though the uterine walls were not invaded, somehow cells found there way to a couple of lymph nodes and I went through radiation and chemo. My gyn-onc is very experienced doctor and he said that he saw only two cases like mine. I am glad he sampled the lymp nodes. It is very important to see a gynecological oncologist. I wrote this not to make you afraid but become aware of different cases. Take care of yourself and good luck.
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