What are the symptoms that led to diagnosis

Sky11
Sky11 Member Posts: 4 Member

I am 54 yrs old and considered in perimenopause. I used to have 28 day cycles up until my late 40's. They started becomming more erratic, coming farther apart some months which I attributed to perimenopause. They currently are doing the same although they have gotten much lighter but last longer. There have been a few months over the past few years where I have had a cycle come twelve to fifteen days after the last. My ob-gyn continually recommends I have an endometrial biopsy. Upon ultrasound my uterine lining is slightly thickned but nothing that seems too alarming. She said it is protocol to recommend the biopsy with erratic cycles. I don't want to have a biopsy if this is normal for perimenopausal women. I understand she has to recommend the biopsy but I don't want to have something for a normal process our body goes through. Any input would be greatly appreciated. 

Comments

  • Forherself
    Forherself Member Posts: 961 Member
    Welcome to the board

    I will jump in here because I am an RN.  There are some things that make you more likely to get endometrial cancer.  Obesity, beginning periods early, late menopause, unopposed estrogen use, and not giving birth, and family history of endometrial cancer.  Do you have any of those characteristics?  No one can answer your question.  It is something we learn here.  There are no cut and dried answers.  Your doctor is being cautious.  He or she is offering the oppoturnity to be pretty sure you don't have cancer.  But it is your choice, and your risk.  The risk is pretty great if you have any pre exisitng conditions as above.  But it is your decision.   I was older and had one incidence of bleeding and pursured it.  I was diagnosed with a very early cancer and elected to have no treatment.  IF i had waited, I might have had to have chemo and radiation, and might have died.  I am the aggressive type cell.  So, it is something you have to decide.  But our stories here might help you understand the situration you are in. 

  • Sky11
    Sky11 Member Posts: 4 Member
    edited October 2021 #3
    Thank you Forherself!

    I do not have any of those characteristics that you listed. I have always been the the person who gets all medical tests when symptoms persit. I was just trying to assess some of the symptoms women were experiencing prior to being dx. It seems as if all of mine are aligned with perimenopause. I appreciate your input. Wishing you good health!

  • BluebirdOne
    BluebirdOne Member Posts: 654 Member
    More resources for you.

    Forherself makes excellent points. I will also point you to this: https://www.nccn.org/patients/guidelines/content/PDF/uterine-patient.pdf  

    The thing that stood out to me, compared to others, is that you are not actually in menopause?  A risk factor post menopause is bleeding. I had two teeny tiny spots, light pink, so small that the first time I dismissed it, the second time a few weeks later I went for a pap, vaginal ultrasound. Prior to menopause age 52, 15 years before my dx of UPSC I had the same symptoms as you, heavy bleeding, clots, a mess. No cancer. I would urge you to read the guidelines, and use that to formulate questions if you have any. Those guidleines pertain mostly to the diagnosis of endometriod cancer, the most common type, which is estrogen dependent. My UPSC, serous, is not. Uterine sarcoma also is not estrogen dependent, which means that obesity, too much estrogen etc. is not a risk factor for the rarer uterine cancers. 

     

    That being said, endometrial biopsies are not always accurate in finding cancer because they may only sample areas that do not have tumor tissue. In my case, I had polyps that were also cancerous, only after hysterectomy they were able to determine that I also had cancer penetrating the uterine wall because they were able to examine the entire uterus. You might want to discuss this with your doctor. I had a procedure called hysteroscopy instead of a biopsy which allowed them a lighted view into the uterus. Many of our contributors were not able to tolerate the biopsy procedure due to pain or other issues. 

    So you have a big decision to make. The vast majority of women with your symptoms do not end up with cancer, or it is the very treatable endometriod type. Educating yourself will give you the tools and knowledge to make informed decisions with your doctor. The fact that your doctor is proactive is important, so many of us had to fight with our docs to get tests, treatment. To give your some perspective, so many of us would give anything to go back and push for an early diagnosis as diagnostic tests that eliminate cancer are like gold compared to having to deal with treatment. I understand your hesitancy, I was the same at first, sadly having a doctor who was incompetent at best. So I would read the guidelines, read the threads about biopsies. Good luck to you and let us know how you are doing.

    Denise 

  • Sky11
    Sky11 Member Posts: 4 Member

    More resources for you.

    Forherself makes excellent points. I will also point you to this: https://www.nccn.org/patients/guidelines/content/PDF/uterine-patient.pdf  

    The thing that stood out to me, compared to others, is that you are not actually in menopause?  A risk factor post menopause is bleeding. I had two teeny tiny spots, light pink, so small that the first time I dismissed it, the second time a few weeks later I went for a pap, vaginal ultrasound. Prior to menopause age 52, 15 years before my dx of UPSC I had the same symptoms as you, heavy bleeding, clots, a mess. No cancer. I would urge you to read the guidelines, and use that to formulate questions if you have any. Those guidleines pertain mostly to the diagnosis of endometriod cancer, the most common type, which is estrogen dependent. My UPSC, serous, is not. Uterine sarcoma also is not estrogen dependent, which means that obesity, too much estrogen etc. is not a risk factor for the rarer uterine cancers. 

     

    That being said, endometrial biopsies are not always accurate in finding cancer because they may only sample areas that do not have tumor tissue. In my case, I had polyps that were also cancerous, only after hysterectomy they were able to determine that I also had cancer penetrating the uterine wall because they were able to examine the entire uterus. You might want to discuss this with your doctor. I had a procedure called hysteroscopy instead of a biopsy which allowed them a lighted view into the uterus. Many of our contributors were not able to tolerate the biopsy procedure due to pain or other issues. 

    So you have a big decision to make. The vast majority of women with your symptoms do not end up with cancer, or it is the very treatable endometriod type. Educating yourself will give you the tools and knowledge to make informed decisions with your doctor. The fact that your doctor is proactive is important, so many of us had to fight with our docs to get tests, treatment. To give your some perspective, so many of us would give anything to go back and push for an early diagnosis as diagnostic tests that eliminate cancer are like gold compared to having to deal with treatment. I understand your hesitancy, I was the same at first, sadly having a doctor who was incompetent at best. So I would read the guidelines, read the threads about biopsies. Good luck to you and let us know how you are doing.

    Denise 

    More Resources

    Thank you Denise. I appreciate the information and the link is a useful resource. I certainly would want to be proactive and have testing done sooner than later. It conflicting when I don't fit the criteria especially after reading through the threads. My doctor believes that the hormonal fluctuations of perimenopause can cause endometrial cancer and that is her reasoninig for suggesting I get the biopsy. I am also concerned about the pain of the procedure. I will speak to her about the other procedure you mentioned. Thank you for responding. Be well!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    edited October 2021 #6
    Hey Denise, I couldn't agree

    Hey Denise, I couldn't agree more with the statement, "The fact that your doctor is proactive is important".  Sadly, my gyn is retiring and I just saw her for the last time.  We talked about me not having any of the normal, contributing factors, and I had both the "typical garden variety type" and UPSC.  She saved my life and I will never forget this woman!  I told her I have read where other women have not been as lucky as me and push to get answers and how incredibly sad it is.

    Sky, It sounds like you are aware of your body, and that is a good thing. 

  • Quilter_1
    Quilter_1 Member Posts: 117 Member
    Have the biopsy, it's not

    Have the biopsy, it's not that bad.  My ob/gyn did a biopsy as a precaution, because of unusual bleeding, not expecting the results to be positive.  It was positive.  She and I cried together the day I got the result.  If your doctor wants you to have one, best case scenario is it is negative.

  • MoeKay
    MoeKay Member Posts: 476 Member
    edited October 2021 #8
    Similar Story

    I had some intermittent spotting and thought it was due to the onset of menopause, since my periods had become irregular and I was 51.  When I saw my gynecologist, she said she thought I was likely going through menopause.  Her plan was to do the endometrial biopsy, and once it came back normal, she would start me on a low-dose hormone.  However, the biopsy was positive and she referred me to a gynecologic oncologist.  I also had an ultrasound and my myometrium was not abnormally thickened.

     

     

  • Sky11
    Sky11 Member Posts: 4 Member
    Great input

    Thank you to all who responded. I definitely have some clarity now. It seems as if there are many different symptoms that can lead to a dx. MoeKay, indeed your story seems to mimic mine. I have my appointment scheduled for next week and will hope for a postive outcome and that all my symptoms are due to perimenopause. Good health to all! 

  • woodstock99
    woodstock99 Member Posts: 202 Member
    edited October 2021 #10
    Light spotting on toilet

    Light spotting on toilet paper started in late April of this year. I am 68 and knew this could not be good.  My internist sent me to have a urine analysis that came back negative for UTI, etc so off to OBGYN.  Exan and pap were good but subsequent vagibnal ultarsound showed something. Referred to gynecologist oncologist as I had early stage breast cancer almost 6 years ago (NED) for D&C and other tests that came back cancer.  Had no other symptoms.  I wish I had known more about EC and that I was at higher risk of developing another cancer and I would have asked for ultrasounds proactively.  Get the testing done and all the best. 

  • zsazsa1
    zsazsa1 Member Posts: 565 Member
    New onset scant clear vaginal

    New onset scant clear vaginal discharge at about age 56.  I was wrongly told by my GYN that this meant nothing, that I didn't need the transvaginal U/S I had scheduled for that day, and that what I should watch for was blood.  Reassured, I waited  through the clear discharge until there was finally blood - a year later, when I was diagnosed with UPSC.

    First of all, have the biopsy.  It's not that bad.  But a negative biopsy doesn't mean you're in the clear - plenty have had an endometrial biopsy miss the cancer.  Second of all, the reality is that 5% of women will have a GYN malignancy in their lives.  By your age, most women are in menopause, with no ovarian function, and have stopped menstruating.  Every woman on this site wishes that she had had a hysterectomy BEFORE she developed uterine cancer, and then there's also ovarian, fallopian tube, not to mention that most of us were probably also infected subclinically with HPV and still have a risk of cervical cancer.  So you're asking for an opinion from a pre-selected group that is more likely to encourage aggressive treatment.

    An endometrial biopsy is most definitely NOT aggressive treatment.  If your GYN is recommending it, have it done.  If it were me, I'd just push for a laparocopic hysterectomy, and never have to worry about a GYN malignancy again.

  • BluebirdOne
    BluebirdOne Member Posts: 654 Member
    edited October 2021 #12
    zsazsa1 So glad to hear from you again!

    Hope you have been well.

    Once again, your thoughtful and informative insights are spot on (no pun intended, lol).

    Denise

  • Harmanygroves
    Harmanygroves Member Posts: 486 Member
    My Symptoms

    --Painful, and I mean painful, intercourse 

    --Constipation

    --Tiny amount of salmon-colored blood on toilet paper

    That was it. Pap smear was so painful it was nearly discontinued, but I said, "you're here, I'm here, just do it." Endometrial tissue--cancerous tissue--was exiting the uterus through the cervical canal, and showed up on my Pap! Nearly unheard of.

    Aytipcal glandular cells of likely endometrial origin showed up, and my sample was sent to a pathologist. From there, things went fast, lickety split fast. 

    I asked for a D and C, etc. because a close friend recommended that instead of a biopsy, and I began doing research and agreed that a D and C / hysteroscopy would be best. They also did a polypectomy.