I am feeling lost!

rimuga
rimuga Member Posts: 13
edited March 2014 in Uterine/Endometrial Cancer #1
I am 34 years old. My last son was born in may 2003, after which I immediatly began having the heaviest periods ever. My periods were heavy enough to make me anemic, so my gyn at the time did some testing which revealed nothing abnormal. No fibroids, polyps, nothing. I was given the choice of a hysterectomy or endometrial ablation. I chose the ablation. After the procedure I developed an infection, and my periods were normal again. (even though he said I wouldn't have any, but normal was waaay better than what I was having) Within the first year after the ablation I began having a watery discharge, no odor but it was always there and severe cramping in my abdomen and back all the time, not to mention my hair falling out, vision getting blurred and mind blowing headaches. My gyn said the discharge was sympathetic, whatever that means? and that the other symptoms were probably hormonal imbalance. I suggested having tests ran to see what was not balanced but was told it was too costly and time consuming. Since then the cramping is still here on almost a daily basis not to mention worse when I do try to be intimate. So to a new gyn I went, my pap came back normal and the ultrasounds revealed a fibroid, polyp, ovarian cyst, and abnormal cells in the endo. What does that mean? The report recommends for me to have a hysterosonogram. Isn't this just another picture of what they already seen? So my questions are where did all this stuff grow from if the endo lining was removed during the ablation? and why take more pictures? Plus what does abnormal cell growth mean, I assume its not more fibroids or polyps since they obviously know what those looked like in there. I am really starting to worry, because I got the results from the nurse because the dr. is out of office till next week. Could this be cancer? I am the oldest female in my family to still have all here reproductive equipment, and female cancers are all over in my family.

any help suggestions or comments would be greatly appreciated

Comments

  • nursey420
    nursey420 Member Posts: 52 Member
    #2
    Don't be lost
    If it was me I would have the doctor do a biopsis right away. Good news is you are young so the chances of cancer are less. I had ablation 3 years prior to getting the cancer dignosis. Abnormal cell growth can mean many things and not always cancer. I never heard of ultrasound finding abnormal cells in the endometral lining. I would think it would be more of a fibroid. Nothing says you can't get a 3rd of 4th opition. Keep us update and try not to worry to much.
  • rimuga
    rimuga Member Posts: 13
    #3
    nursey420 said:

    Don't be lost
    If it was me I would have the doctor do a biopsis right away. Good news is you are young so the chances of cancer are less. I had ablation 3 years prior to getting the cancer dignosis. Abnormal cell growth can mean many things and not always cancer. I never heard of ultrasound finding abnormal cells in the endometral lining. I would think it would be more of a fibroid. Nothing says you can't get a 3rd of 4th opition. Keep us update and try not to worry to much.

    Thanks for the reply. I
    Thanks for the reply. I wouldn't have even thought about cancer, but my doctor pointed it out to me when he said I needed the first two ultrasounds, and I didn't think about it until you pointed it out, but ya how could an ultrasound find abnormal cells, an abnormal growth yes, but cells no. The nurse told me to call back monday morning when the doctor is back in so he can go over the ultrasounds, and labs they took I will ask about a biopsy. When I had the ablation, my gyno at the time found a mass in my uterus, he said it looked like a gestational sac, and sent me to get a blood test to see if I was prego. I assured him I wasn't since I had my tubes tied and had just finished my period. But he never did end up saying what it was. That gyno retired, and I seen my new family physician for the next couple yearly exams, until I found this doctor by referral. I have been doing some online research and found a site that is doing a study on post-ablation uterine cancer occurance. It seems that the age group in this study is statistically younger than what the risk factor age group is. I think they are trying to determine if there is a link. They could have put that in the fine print of my pamphlet, then maybe I would have chose the hysterectomy.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #4
    rimuga said:

    Thanks for the reply. I
    Thanks for the reply. I wouldn't have even thought about cancer, but my doctor pointed it out to me when he said I needed the first two ultrasounds, and I didn't think about it until you pointed it out, but ya how could an ultrasound find abnormal cells, an abnormal growth yes, but cells no. The nurse told me to call back monday morning when the doctor is back in so he can go over the ultrasounds, and labs they took I will ask about a biopsy. When I had the ablation, my gyno at the time found a mass in my uterus, he said it looked like a gestational sac, and sent me to get a blood test to see if I was prego. I assured him I wasn't since I had my tubes tied and had just finished my period. But he never did end up saying what it was. That gyno retired, and I seen my new family physician for the next couple yearly exams, until I found this doctor by referral. I have been doing some online research and found a site that is doing a study on post-ablation uterine cancer occurance. It seems that the age group in this study is statistically younger than what the risk factor age group is. I think they are trying to determine if there is a link. They could have put that in the fine print of my pamphlet, then maybe I would have chose the hysterectomy.

    Can you still have a D&C after having an ablation?
    I lost a lot of time having a bunch of 'inconclusive' and 'nondiagnostic' biopsies at 2 different doctors. The first test I did that really showed anything definitive was a D&C. Can you still have one of those after an ablation? If so, you may want to push for a D&C in order to get a conslusive diagnosis, where they have a larger sample of tissue to test. My gynecologist said she needed to do the biopsies first before she would do anything as invasive as a D&C, so you will probably need to go that route and get the endometrial biopsy first. And when I went to a gynecologic oncologist next, he did all of the biopsies AGAIN at the initial visit (wasn't expecting THAT!!) before he got my actual slides from the D&C from my gynecologist. The gynecologic oncologist was the one that made my diagnosis based on the tissue samples from the D&C at the other facility.

    How wonderful it will be if this is nothing!! And it probably is, even though you do have a lot of symptoms. But I know you will worry if you don't investigate this more thoroughly. Please don't let them tell you 'we'll wait and see'. If your gynecologist says that, please get another opinion from someone willing to give you the peace of mind you deserve, or (God forbid!) the early warning you need. BIG HUGS!!! DEEP BREATH!!
  • rimuga
    rimuga Member Posts: 13
    #5
    lindaprocopio said:

    Can you still have a D&C after having an ablation?
    I lost a lot of time having a bunch of 'inconclusive' and 'nondiagnostic' biopsies at 2 different doctors. The first test I did that really showed anything definitive was a D&C. Can you still have one of those after an ablation? If so, you may want to push for a D&C in order to get a conslusive diagnosis, where they have a larger sample of tissue to test. My gynecologist said she needed to do the biopsies first before she would do anything as invasive as a D&C, so you will probably need to go that route and get the endometrial biopsy first. And when I went to a gynecologic oncologist next, he did all of the biopsies AGAIN at the initial visit (wasn't expecting THAT!!) before he got my actual slides from the D&C from my gynecologist. The gynecologic oncologist was the one that made my diagnosis based on the tissue samples from the D&C at the other facility.

    How wonderful it will be if this is nothing!! And it probably is, even though you do have a lot of symptoms. But I know you will worry if you don't investigate this more thoroughly. Please don't let them tell you 'we'll wait and see'. If your gynecologist says that, please get another opinion from someone willing to give you the peace of mind you deserve, or (God forbid!) the early warning you need. BIG HUGS!!! DEEP BREATH!!

    I'm not sure if you can
    I'm not sure if you can still have a D&C after an ablation. I was under the assumption that the ablation cauterized the cells that make the lining grow, but I guess not. At least in my case it didn't or if it did the cells all grew back and then some. This is another good question to ask, thank you. I am going to write these down so I won't forget to ask something on Monday. Because I had been wondering myself how I am having so many problems now, when the only problem I had then was heavy bleeding and anemia. With no or reduced lining I should have no or reduced problems. I am so confused, my head is spinning. I have read that a D&C can be done to remove polyps and fibroids too,? Since I have those also maybe I can get the dr to do that, then at least those will be gone and maybe they can get a diagnosis of the other thing they seen. Thank you for responding, I don't want to worry for nothing but I don't really no where to turn to for answers or suggestions. Would you happen to know what the hysterosonogram can see that a ultrasound can't?
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #6
    rimuga said:

    I'm not sure if you can
    I'm not sure if you can still have a D&C after an ablation. I was under the assumption that the ablation cauterized the cells that make the lining grow, but I guess not. At least in my case it didn't or if it did the cells all grew back and then some. This is another good question to ask, thank you. I am going to write these down so I won't forget to ask something on Monday. Because I had been wondering myself how I am having so many problems now, when the only problem I had then was heavy bleeding and anemia. With no or reduced lining I should have no or reduced problems. I am so confused, my head is spinning. I have read that a D&C can be done to remove polyps and fibroids too,? Since I have those also maybe I can get the dr to do that, then at least those will be gone and maybe they can get a diagnosis of the other thing they seen. Thank you for responding, I don't want to worry for nothing but I don't really no where to turn to for answers or suggestions. Would you happen to know what the hysterosonogram can see that a ultrasound can't?

    I only had a sonogram, not an ultrasound.
    I didn't have an ultrasound, but I did have the sonogram which showed a tiny pencil-point sized polyp on my endometrial lining. That polyp, which they removed during the D&C, DID turn out to be the start of my cancer, but my cancer had spread to 1 fallopian tube and 1 lymph node by the time of my much-delayed hysterectomy. So I don't know the answer to your question, but a couple of the women here are nurses and can probably answer that, although you may need to make it a separate topic if they miss it. IF you start a new discussion thread, be sure and also ask them if you can have a D&C after an ablation.

    Please let me reassure you that even if this IS cancer (and it probably isn't!) by the time I had 4 rounds of chemo in me my doctor already considered me in remission and my CT-scans show no evidence of disease. So don't be too afraid, either way. ((((riguga))))) Is there another name we should be using for you?
  • rimuga
    rimuga Member Posts: 13
    #7
    lindaprocopio said:

    I only had a sonogram, not an ultrasound.
    I didn't have an ultrasound, but I did have the sonogram which showed a tiny pencil-point sized polyp on my endometrial lining. That polyp, which they removed during the D&C, DID turn out to be the start of my cancer, but my cancer had spread to 1 fallopian tube and 1 lymph node by the time of my much-delayed hysterectomy. So I don't know the answer to your question, but a couple of the women here are nurses and can probably answer that, although you may need to make it a separate topic if they miss it. IF you start a new discussion thread, be sure and also ask them if you can have a D&C after an ablation.

    Please let me reassure you that even if this IS cancer (and it probably isn't!) by the time I had 4 rounds of chemo in me my doctor already considered me in remission and my CT-scans show no evidence of disease. So don't be too afraid, either way. ((((riguga))))) Is there another name we should be using for you?

    thanks again, and my name is
    thanks again, and my name is Ricki
  • rimuga
    rimuga Member Posts: 13
    #8
    lindaprocopio said:

    I only had a sonogram, not an ultrasound.
    I didn't have an ultrasound, but I did have the sonogram which showed a tiny pencil-point sized polyp on my endometrial lining. That polyp, which they removed during the D&C, DID turn out to be the start of my cancer, but my cancer had spread to 1 fallopian tube and 1 lymph node by the time of my much-delayed hysterectomy. So I don't know the answer to your question, but a couple of the women here are nurses and can probably answer that, although you may need to make it a separate topic if they miss it. IF you start a new discussion thread, be sure and also ask them if you can have a D&C after an ablation.

    Please let me reassure you that even if this IS cancer (and it probably isn't!) by the time I had 4 rounds of chemo in me my doctor already considered me in remission and my CT-scans show no evidence of disease. So don't be too afraid, either way. ((((riguga))))) Is there another name we should be using for you?

    update
    On April 24 I will be having a hysteroscopy, D&C and laparscopy. The hysterosonogram showed the same fibroid, polyp, ovarian cysts and that the lining at the top of my uterus is thickened and irregularly shaped.(not smooth) It also showed the fibroid is growing inside the wall of my uterus. I still haven't been able to talk to the doctor, but his nurse is very nice and has been setting up all the appointments and answering my questions to the best of her ability. I have an appointment with Dr a couple of days before these procedures, so maybe he is waiting to talk to me until then.
  • deanna14
    deanna14 Member Posts: 732
    #9
    rimuga said:

    update
    On April 24 I will be having a hysteroscopy, D&C and laparscopy. The hysterosonogram showed the same fibroid, polyp, ovarian cysts and that the lining at the top of my uterus is thickened and irregularly shaped.(not smooth) It also showed the fibroid is growing inside the wall of my uterus. I still haven't been able to talk to the doctor, but his nurse is very nice and has been setting up all the appointments and answering my questions to the best of her ability. I have an appointment with Dr a couple of days before these procedures, so maybe he is waiting to talk to me until then.

    Ricki
    I am glad that you have been able to get more information. Good luck with the upcoming exam. They should at least be able to biopsy the abnormal tissue when they do the D&C. The pathology from the D&C, hysteroscope, laproscope is what led to my hysterectomy.
    Even though the nurse has been very helpful, it is important that you get to speak with your doctor. I would make a list of the questions that I have and be sure you are able to get all of the answers when you see the doctor prior to the procedure. I would not sign a consent to the procedure until you get to talk to the doctor. My doctor is the one who gave me the results from the ultrasound.
    Good luck again and please keep us posted on your progress. God Bless you.
    Deanna
  • jankenb
    jankenb Member Posts: 28
    #10
    lindaprocopio said:

    I only had a sonogram, not an ultrasound.
    I didn't have an ultrasound, but I did have the sonogram which showed a tiny pencil-point sized polyp on my endometrial lining. That polyp, which they removed during the D&C, DID turn out to be the start of my cancer, but my cancer had spread to 1 fallopian tube and 1 lymph node by the time of my much-delayed hysterectomy. So I don't know the answer to your question, but a couple of the women here are nurses and can probably answer that, although you may need to make it a separate topic if they miss it. IF you start a new discussion thread, be sure and also ask them if you can have a D&C after an ablation.

    Please let me reassure you that even if this IS cancer (and it probably isn't!) by the time I had 4 rounds of chemo in me my doctor already considered me in remission and my CT-scans show no evidence of disease. So don't be too afraid, either way. ((((riguga))))) Is there another name we should be using for you?

    sonogram =ultrasound
    Just two terms for the same test.
    Some gynes do their own and report their own and some are done by an ultrasound tech and
    reported by a radiologist.
    sonogram is actually the waveform used for an ultrasound
    janet
  • jankenb
    jankenb Member Posts: 28
    #11
    rimuga said:

    update
    On April 24 I will be having a hysteroscopy, D&C and laparscopy. The hysterosonogram showed the same fibroid, polyp, ovarian cysts and that the lining at the top of my uterus is thickened and irregularly shaped.(not smooth) It also showed the fibroid is growing inside the wall of my uterus. I still haven't been able to talk to the doctor, but his nurse is very nice and has been setting up all the appointments and answering my questions to the best of her ability. I have an appointment with Dr a couple of days before these procedures, so maybe he is waiting to talk to me until then.

    sounds like good plan
    best of wishes for you.
    Since I live a long ways from where my gyne/onc was, the tests were all sent to her, the surgery was booked and I met her the day before
    And it worked out great.
    SOmetimes going through all this stuff, a doctor likes to save for a piece of time that they can spend more time and
    explain a lot
    This is harder to do with just phone calls back and forth.
  • rimuga
    rimuga Member Posts: 13
    #12
    jankenb said:

    sonogram =ultrasound
    Just two terms for the same test.
    Some gynes do their own and report their own and some are done by an ultrasound tech and
    reported by a radiologist.
    sonogram is actually the waveform used for an ultrasound
    janet

    update
    The doctor told my mother that he was unable to do a complete D&C because the top of my uterus (where the suspect tissue is) is closed off from the rest of it. He said he made a hole and got a biopsy. He removed the ovarian cysts and a piece of something else. I'm not sure what it is, but it is black. My mom said that the dr told her he didn't know what it was either. He told her to have me call the office on Wed. to get path results. So now I am here waiting, again. But at least I have some interesting pictures of the procedures to look at. My mom never said if he removed the polyp or the fibroid, I forgot to ask her. But one of the cysts were bigger than the ovary. Thats probably why the radiologists report said one of my ovaries was twice the size of the other, must have measured the wrong thing. I had assumed that after the D&C I would have quit a bit of bleeding, but I don't have any, is this normal?

    Ricki
  • deanna14
    deanna14 Member Posts: 732
    #13
    rimuga said:

    update
    The doctor told my mother that he was unable to do a complete D&C because the top of my uterus (where the suspect tissue is) is closed off from the rest of it. He said he made a hole and got a biopsy. He removed the ovarian cysts and a piece of something else. I'm not sure what it is, but it is black. My mom said that the dr told her he didn't know what it was either. He told her to have me call the office on Wed. to get path results. So now I am here waiting, again. But at least I have some interesting pictures of the procedures to look at. My mom never said if he removed the polyp or the fibroid, I forgot to ask her. But one of the cysts were bigger than the ovary. Thats probably why the radiologists report said one of my ovaries was twice the size of the other, must have measured the wrong thing. I had assumed that after the D&C I would have quit a bit of bleeding, but I don't have any, is this normal?

    Ricki

    bleeding post D&C
    I didn't bleed very much after the D&C, but had a very heavy period at the time it was due.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #14
    rimuga said:

    update
    The doctor told my mother that he was unable to do a complete D&C because the top of my uterus (where the suspect tissue is) is closed off from the rest of it. He said he made a hole and got a biopsy. He removed the ovarian cysts and a piece of something else. I'm not sure what it is, but it is black. My mom said that the dr told her he didn't know what it was either. He told her to have me call the office on Wed. to get path results. So now I am here waiting, again. But at least I have some interesting pictures of the procedures to look at. My mom never said if he removed the polyp or the fibroid, I forgot to ask her. But one of the cysts were bigger than the ovary. Thats probably why the radiologists report said one of my ovaries was twice the size of the other, must have measured the wrong thing. I had assumed that after the D&C I would have quit a bit of bleeding, but I don't have any, is this normal?

    Ricki

    I had no bleeding, not even spotting with my D&C.
    I left for a 9-day hiking trip in Utah 3 days after my D&C, and even with the travel and strenuous exercise, experienced no bleeding at all (not even spotting) from my D&C. I know ythe wait for pathology reports is excruciating. Try to keep busy and distracted and not let your mind go crazy with "what if" scenarios. ((((BIG HUGS)))).

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