Very Scared Endometrial Cells On My Pap Test My Mother Died Of Uterine Cancer At 49!

[cartlin]

Hi,

I'm new on here and I have posted on other forums about my 3 small thyroid nodules (one is 1cm and is predominately solid on the left side which my endo biopsied twice in one day, and the other 2 or about 6 and 7mm and are mostly cystic and one of these is on my isthmus which isn't a very common place for nodules to be!) that were found by accident in late 2005 on an ultrasound and my thyroid blood tests have always been normal. I just had an FNA on June 24th by a very good endo and I had my samples sent to another pathologist at a top hospital for a second opinion and both pathologists didn't see any cancer and the second pathologist says he does recommend clinical follow up for these nodules and another FNA if any of them grow.


Also I do have some of the ultrasound features that are commonly found with thyroid cancer and a Clinical Endocrinologist says that FNA is only 95% accurate and I know it's not as easy to get a great sample when the nodules especially my other 2 are this small. So now after almost 3 years of being so afraid about this and reading a lot of scary medical information about thyroid cancer which has been reported increased especially in women, and they are finding an increase in very small papillary thyroid cancers often picked up like mine were by accident on ultrasounds and other imaging tests and I communicated with many thyroid cancer survivors some of which had recurrences, and having the thyroid FNA, I now have to have a uterine biopsy on August 28 and my stepmother is taking me to her gynocologist for it!

I had a Pap test on July 24th and a week later my gynocologist calls me and tells me that endometrial cells were found on my Pap test! I asked her what does this mean I'm really scared because my own mother died of uterine cancer on September 1, 1985 in just 4 months after being diagnosed at the age of 49! My gynocologist didn't even tell me or explain that much and all she said was it happens sometimes and that if I was under 40 we could just ignore it, but because I'm 43 she is required to do a biopsy.She said it might have happened because my period had ended 2 days before. But my internist said that it's not very common for this to happen and that other women have Pap tests near the end of their periods too but endometrial cells don't usually show up in their Pap tests.


I have also been spotting reddish browinish blood for about 3 or 4 days at a time in between my period off and on since the Fall of 2005 and it happened again in March and April and I have been getting my period since I was 12 and half but I never had any spotting in between my period before. I also have never been pregnant and I have never used birth control pills and I know that these are also risk factors for endometrial uterine cancer.

I have found other women who also had endometrial cells in their Pap tests and they are really worried too but they didn't say that they had spotting in between their periods and that they had any family members especially their mother who had and or died from uterine cancer so I'm doubly afraid! I have found many very good medical studies on great academic medical sites where both gynocologists and patients have discussions on there and they say that it's not very common for endometrial cells to show up on Pap tests but it's not rare either especially towards the beginning or end of a woman's period and that it does happen sometimes and most of the time it's not uterine cancer in menstrating women but is more often cancer in postmenapausal women but also if there is other symtoms like vaginal bleeding.



But they also say that one of the causes of endometrial cells showing up on Pap tests is because of low or high grade uterine cancer! And there have been women who had normal benign endometrial cells on their Pap test and they had endometrial uterine cancer! And a study in June 2007 by The Oncologogy Gynocology Department at The University of Texas M.D. Anderson Cancer Center found that out of 2494 of premenopausal women age 40 and older, from a 12 month period endometrial cells on Pap tests were found to have significant uterine pathology regardless of what part of their menstrual cycle they were in!

From the time my mother died I have asked 4 different gynocologists and my internist if uterine cancer is genetic and if I have to worry about it, and they all always told me that breast cancer is more commonly genetic but that uterine cancer usually isn't. Yet I spoke with a woman at a Cancer Society and she said that contrary to what I have been told their document does say family history is a risk factor with uterine cancer. and that women with family members who had uterine cancer are more likely to get it and on the web site of the hospital where my mother died they talk about risk factors and they say that women who have family members especially a mother or sister who had uterine cancer or twice as likely to get it!

Also I recently called both hospitals where my mother was at which includes the second one she died at and I requested her medical records be sent to me and my father a retired lawyer, faxed them the info they needed and they are sending them to him by regular mail so we can find out exactly what type of uterine cancer my mother had and maybe why she died so fast. I asked my father if my mother had any symptoms for months before her diagnosis and he said yes, they went on a vacation to France 8 months before she was diagnosed and he said she was exhausted ,had no energy and was practically fainting but she put it off for months before going to the doctor! She got overweight in her mid-late 30's after being thin in her 20's but she was not in any bad health I don't remember her ever being in a hospital for anything. I remember she was bleeding about a month before she was diagnosed but she didn't go to a doctor right away because she thought she was getting menopause! She died a week and 4 days before her 50th birthday!

So I'm very afraid and I wanted to please know from any women on here who has had a uterine biopsy, if the endometrial biopsy hurts that bad. And I would really appreciate any info and support you have about endometrial cells on Pap tests.

Thank You

[cartlin]

Also my mother had a hysterectomy and chemotherapy and they even tried alternative treatments, and after her hysterectomy and chemotherapy she went into a very short remission for just about a month and came home from the hospital but then her cancer spread to her lungs! My mother ironically was a social worker who worked with cancer patients! My mother didn't have any sisters but she had no close female family members with uterine cancer. Her mother lived to be 91 and her maternal grandmother lived to be 90, my grandmother's youngest sister died of breast cancer in her 40's.

My gynocologist is such an insensitive creep! She called me back a day after I had left 2 messages with her receptionist about getting a transvaginal pelvic ultrasound for some peace of mind before I get the uterine biopsy on August 28 which I had asked her for when she first called me and told me about this. I was told that getting the transvaginal ultrasound first lets the doctor know where exactly to biopsy.


In the Fall of 2005 I went to my regular gynocologist and told her about the spotting in between my period and all she did was give me a regular pelvic exam, then some months later I had the spotting again so I went back to see another woman gynocologist who was there on a day mine wasn't. And I told her about the spotting and that I was really concerned because my mother died of uterine cancer at age 49. All this gyno did was give me a regular pelvic exam and neither could answer me why the spotting is happening, she said I have to come in when it happens which is not easy to do because it skips months and the women gynocologists are not always there when it happens. She said she would be concerned if I was bleeding heavily but who wants to wait until then?! I have been getting my period since I was 12 and a half but I *never* had any spotting in between my period until when it started!

I went to my internist in February 2006 and told her about the spotting and my concerns and when I told her that the 2 gyno's just gave me a pelvic exam, she said she wanted me to have a transvaginal pelvic ultrasound because there are certain things you can't see with just a regular pelvic exam. So I had it done in October 2006 since the spotting had gone away for a while and it came back normal. But I just read a post on a message board about women who got uterine cancer from tamoxifen to treat their breast cancer and one woman said that she had just a black and white transvaginal ultrasound with no color doppler and they missed her uterine tumor! It made me think about the fact that they didn't use color doppler with my pelvicvaginal ultrasound sound either and that was almost 2 years ago and my spotting in between my period is still going on off and on and now these endometrial cells turned up in my Pap test! It makes me so afraid to think that some tumor or tumors are in my uterus by now!!


My gynocologist was nasty and annoyed with me for calling her office again and wanting some real answers about what this means my stepmother had said to me after my gynocologist first told me about this, that she scared me and didn't really tell me anything about what this is and means. My stemother said you call her and ask her to explain this to you and I said well she doesn't act nice about it like with the abnormal Cervical Cells on my Pap test years ago, and my stermother said you can be tough ask her.She wanted me to wait until September to come in her office and talk about this and she would try to do a biopsy because I asked her if it hurts and she said yes and if she can't do it in her office I'll have to have a D&C where they put you to sleep and I'm too afraid of being put to sleep!

She said most of the time this is nothing, and that a family history plays a role but there is not a strong genetic link to uterine cancer and yet she still wanted to do a biopsy! She said that I should find another gynocologist and that I should see a psychiatrist! She had the nerve to also bring up how afraid I was when in November 2003 I had ,a Pap test come back showing abnormal cervical cells and I asked a Cancer Society to send me information on Pap tests and cervical cancer soon after this and it says don't use tampons 2 or 3 days before the test because it effects the results. And I had been using tampons just 2 days before so I'm sure thats what happened there and I had 3 normal follow up Pap tests after until this one. And I said to her I had good reason to be worried then but this new result is different and much more worrisome because the other abnormal test didn't show endometrial cells which are not very common on a Pap test and my mother died of uterine not cervical cancer!

I really do want to find another gynocologist who is nicer but it seems it's really hard to find nice doctors, medical assistants and nurses and some of her recptionists and medical assistants are nasty creeps too!. My stepmother had asked me to ask my gynecologists medical assistant to fax over my results to her and she said in a not nice way to me, no she's not going to fax it over to my mother in law or anyone, else because she had faxed it to a top cancer center in my city and I told my stepmother this and she said they are really nasty in that office! And this gynecologist is really convenient right across the street and takes both of my insurrances.

[Anita Porpoise]

Wowsa!
Hi, I'm 54, and last year I had radical hysterectomy for Endometrial Cancer. It was staged at II and radiation was recommended, but I refused it and the doctors respected my choice. 25yrs ago an Endocrinologist found a Pituitary tumor (benign) that led to Hypothyroidism. My maternal grandmother died at 90 and my mother is 94 and has never had cancer or thyroid problems.
I too, never was on BC or had a pregnancy.
But....always but. I have always been obese....morbidly obese....301# my highest weight. Currently I'm 290#.
After being diagnosed with Endo cancer I read that the over production of Estrogen is produced in fat.....seriously I did not know that before. Would I have changed and lost weight if I knew that..........I doubt it.

I was too skittish to have the Endometrial biopsy, so my good gyn rescheduled and gave me an Rx for two pills, I think valium and vicodin. I still was tense, but made it through without pain. Afterwards the clinic called me and told me to keep my appt with my gyn, but that they were scheduling me with another dr. I saw the gyn and he told me that they found cancer and that the gynecologist/oncologist would be handling it.

I had surgery a month later. The pathology only found cancer in the Uterus. No cancer cells were found in the fallopian tubes, cervix, ovaries or the lymph nodes that were taken. Strangely the pathology did NOT find agressive cancer cells that the biopsy did. They don't know why.

Here a year later I feel fine and a CAT scan showed that I'm cancer free.

About your mom's cancer and death. It was 1985 and medicine has come a long way even since then. If you get the free pamphlet from National Institute of Health, you will find that chemo is rarely if ever used on Endometrial cancer. Your mother's cancer sounds as if it had mestastized by the time it was found. And even though it goes/travels to other organs in the body like lungs, etc....it will still be called Endometrium cancer.

Truthfully I don't know how I would react had my mother had died of the same cancer I was diagnosed with. But please remember that there is new technology and you may be 50% mom, but you are also 50% dad.

The best to you.

[cartlin]

Anita, Thank you very much for your nice supportive response! I'm very glad that you are doing so well now. What were your symptoms and how big was your tumor or tumors? And do you know if uterine cancer is likely to be genetic? And do you know anything about endometrial cells being found on Pap tests?

You say I'm 50% mom and 50% Dad, but Dad can never get uterine cancer! But his sister who is several years older than him is in great health at the age of 77! She had 4 children though and they say being pregnant protects the uterus from being exposed to too much estrogen and it's exposed to more progesterone which conteracts the effects of too much estrogen. But my mother had 2 children and still got uterine cancer!

You are right about my mother's cancer being metastasized my father told me that recently he said thats why it was too late. I'm pretty sure she had chemo she lost her hair and was wearing a wig when she went out during her short only one month remission. I wonder how long my mother had the cancer until she started to get symptoms which she then put off for months as my father said. A Cancer Society says in their report they sent me on uterine cancer,that most uterine cancers develop over years. And many can be asymptomatic until it progresses.




<deleted reference to a public figure>


I recently asked a woman at a Cancer Institute how many women were diagnosed and died of uterine cancer in 1985 compared to today because if the treatments were not as good back then, then more women would have died but they didn't she told me the % has remained pretty stable since then!

And what do you think about my gynecologist's nasty attitude she only added to my emotional distress and she should be more understanding that anyone with abnormal test results understandably gets worried and upset and for me I have even *more* reason to be in this case!

[Anita Porpoise]

What were your symptoms and how big was your tumor or tumors?
Start menustration at 11yrs. Always irregular until late twenties, when completely stopped due to Pit tumor. Had surgery at 29, and took med for 10 yrs...so I had periods. Stopped meds, lost periods. Had very few periods between 40 yrs and 50 yrs. Had hot flashes last half of 40s. By 50 thought I was menopausal, but blood test said no. At 51 started bleeding EVERYDAY, but smaller then a dime, and this went on till I turned 53 was diagnosed and had surgery. No pain.
Size, I'm really ignorant about size. Its a mental block thing....was this way about pit tumor too. Don't care...it was on path report that Gyn/oncologist gave me, but I'm sorry I don't remember.

And do you know if uterine cancer is likely to be genetic? I have no idea. But mom has never had cancer, nor did grandparents. But her unidentical twin had ovarian cancer. But my father had THREE PRIMARY cancers. Primary means that they were not connected. Three separate cancers. One was Prostate.

And do you know anything about endometrial cells being found on Pap tests?
No. But you also mention lousy gyn....I could write a book on lousy gyns. In my late 20s when I lost my period for 2.5yrs. and had other symptoms, I went to FIVE GYNS. All patronized me and said that I was worrying too much and it was all in my head. I went to ONE Endocrinologist and he found what was in my head.
When I retrieved my records from the FIVE Gyns....they had the same blood work showng an unusually high Prolactin level. They just didn't find it important enough to tell me; refer me or anything.
But being a woman I still knew that I would always need to see a gyn. So I thought that I found a really good woman gyn. Went to her for years and sent many women to her.
When Endocrinologist, who is my regular doctor too, found blood in my urine, he told me to go immediately to my gyn. He also had found that I was in the menopause. I left his building and went directly to gyn to make an appt.
I went two days later and they had a midwife do my paps/pelvic. I told her and the staff that I was bleeding and that the female gyn was my regular gyn. The midwife needed my gyn to assist and I told her that I was bleeding everyday for 6 months at the time. All she said to me was, what happened to your hands. I lost pigmentation from stupid pit tumor and the rest of my hands were tan.
2 weeks after gyn appt they sent me a postcard saying that paps was negative. THATS IT.

All along I don't have med ins, 'cause I'm not working and I'm too fat to get ins on my own. But if I worked these same ins co would cover me no questions asked. So gyn and Endocrinologist I paid cash because this was important. Oh I'm a 24/7 caregiver to my 94 yr old Alzheimer mom....so she paid.

So 10 mos later I went to the County and their wonderful male gyn LISTENED to me and found it by running standard test.
After surgery and during recovery, I wrote the email from hell to the female gyn............never heard a word.

Unfortunately though some doctors and nurses become jaded or somewhat cold to protect themselves from being emotional. Yrs ago when I had my first MRI, and it was of the brain, so they put your head in a box and you are wrapped like a mummy. Then the machine slides you into the belly of the machine and you listen to 40 mins of banging. The staff was HORRENDOUS. I have had three and the other two the staff was great and the experience was much better.
It may take your Gyn to be in your shoes before she ever gets it. So she deserves a very well written letter of enlightenment.