update

rimuga
rimuga Member Posts: 13
edited March 2014 in Uterine/Endometrial Cancer #1
I have been going back and forth with my dr since Feb. Ultrasounds, blood work, lap, D&C, and hysteroscopy (sp?). Had another appt with gyno yesterday and he says its time to do a hysterectomy. He actually said we probably should've went that route first, instead of doing all these other tests and procedures. The last ultrasound showed my fibroid and polyp have both grown, the cyst on my ovary is now bleeding, and that I have a septate uterus. The dr said the septate uterus part is actually where the walls of my uterus has grown together after my ablation several years ago. This has made it impossible for him to sample the tissue at the top of my uterus. The fibroid and polyp, I am being told are on the posterior side of my uterus, on the outside, not the inside. He still insists that I get a colonoscopy before scheduling the hysterectomy. I had my appt. with that dr. today and he thinks my symptoms are gyno but will do the colonoscopy to put my gyno at ease, he said depending on where the growths are located they could be pushing on my colon causing constipation, or the could actually be on my colon instead. Ugh, I am starting to hate doctors and to top things off I received my 60 day notice letting me know my place of employment is closing, so as of Aug. 5 I will be unemployed, hence no insurance. The hysterectomy will be a LAVH, he said he wants to view my ovaries again and if they look okay he wants to leave them. So it sounds like he will be removing uterus and cervix if everything else appears good. Any thoughts, advice or words of wisdom would be greatly appreciated. Are leaving the ovaries a good, or bad idea? I have a family history of cancer, and I at 34 am the oldest relative in my family with all their female parts, some have had path reports come back as cancer, some have not. Most recently a cousin on my mother's side had a hysterectomy for simialr symptoms and yes it is cancer and she is a couple years younger than I. I know this is long, but I am so frustrated. :(

Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #2
    Don't hesitate about the colonoscopy.
    Honestly, a colonoscopy is nothing. It's painless and you're knocked out, so it's not even humiliating. Even the stuff they give you to drink beforehand has been drastically improved and I never had any cramping or anything.

    I take it your D&C showed no cancer cells, which is wonderful! Why are they leaving the ovaries behind? Estrogen feeds so many gynecologic cancers. I know that you are young, and I imagine that is why they want to leave them in place. But you might want to talk to your oncologist about taking everything so that you sleep easier. Hang in there. BIG HUGS!!
  • rimuga
    rimuga Member Posts: 13
    #3
    lindaprocopio said:

    Don't hesitate about the colonoscopy.
    Honestly, a colonoscopy is nothing. It's painless and you're knocked out, so it's not even humiliating. Even the stuff they give you to drink beforehand has been drastically improved and I never had any cramping or anything.

    I take it your D&C showed no cancer cells, which is wonderful! Why are they leaving the ovaries behind? Estrogen feeds so many gynecologic cancers. I know that you are young, and I imagine that is why they want to leave them in place. But you might want to talk to your oncologist about taking everything so that you sleep easier. Hang in there. BIG HUGS!!

    The colonoscopy doesn't
    The colonoscopy doesn't scare me, what scares me is the urgency the doctors have in getting these procedures done and the fact that I am in pain 24/7. I have two sons and a wonderful fiance but the pain meds I have been on make me not much of a person to be around. My doctors had a meeting today to discuss my case, then the gastro dr office called for me to come in today for the consult, it wasn't scheduled for 2 weeks as that was the earliest they said they could get me in. I have also developed a cough with no fever or any other symptoms asscoiated with a cold. The D&C was incomplete because the thickened lining is at the top of my uterus and the dr can't get there. My path report says the tissue they took from my appendix I think is non-cancerous, and the paraovarian tumors they took were ok, but he left the other thinking it was a functional cyst, but it is still there months later growing and bleeding. If I lay on my stomach I can feel the cyst, I've tried to be intimate but the pain is intolerable. The pain doesn't come from where my ovaries are, and it lasts for days after. My fiance is very understanding, and is apprehensive about hurting me. At 34 I shouldn't be having these problems. It was hard enough to get my children here, let alone have problems now and feeling left in the dark. My dr says I don't fit the criteria for probable cancer, but neither did the other women in my family. I feel a little selfish writing on this board because it could be nothing, but I am lost.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #4
    rimuga said:

    The colonoscopy doesn't
    The colonoscopy doesn't scare me, what scares me is the urgency the doctors have in getting these procedures done and the fact that I am in pain 24/7. I have two sons and a wonderful fiance but the pain meds I have been on make me not much of a person to be around. My doctors had a meeting today to discuss my case, then the gastro dr office called for me to come in today for the consult, it wasn't scheduled for 2 weeks as that was the earliest they said they could get me in. I have also developed a cough with no fever or any other symptoms asscoiated with a cold. The D&C was incomplete because the thickened lining is at the top of my uterus and the dr can't get there. My path report says the tissue they took from my appendix I think is non-cancerous, and the paraovarian tumors they took were ok, but he left the other thinking it was a functional cyst, but it is still there months later growing and bleeding. If I lay on my stomach I can feel the cyst, I've tried to be intimate but the pain is intolerable. The pain doesn't come from where my ovaries are, and it lasts for days after. My fiance is very understanding, and is apprehensive about hurting me. At 34 I shouldn't be having these problems. It was hard enough to get my children here, let alone have problems now and feeling left in the dark. My dr says I don't fit the criteria for probable cancer, but neither did the other women in my family. I feel a little selfish writing on this board because it could be nothing, but I am lost.

    It's OK
    Rimuga,

    It's OK to post here. We are here to help and support you. The uncertainty of this journey we are all on really stinks. I am glad to be here for you.

    It's none of my business, but I suggest that you use COBRA to keep your insurance. If there is no lapse in coverage I believe you should be covered whereever you work in the future and not have to deal with the "pre-existing condition" horror story. If this is not correct, future readers, let me know.

    Best wishes to all,

    Mary Ann
  • rimuga
    rimuga Member Posts: 13
    #5
    daisy366 said:

    It's OK
    Rimuga,

    It's OK to post here. We are here to help and support you. The uncertainty of this journey we are all on really stinks. I am glad to be here for you.

    It's none of my business, but I suggest that you use COBRA to keep your insurance. If there is no lapse in coverage I believe you should be covered whereever you work in the future and not have to deal with the "pre-existing condition" horror story. If this is not correct, future readers, let me know.

    Best wishes to all,

    Mary Ann

    COBRA is definalty the
    COBRA is definalty the option for me. The payment is crazy, but I cannot take the chance. My mother is pushing me to get they hyst, which makes me feel uneasy, like maybe she isn't telling me everything. I am estranged from most of my maternal side of the family and my paternal side I do not know much about since I only met him once when I was 14. I have sent emails to a cousin on my paternal side to find as much history as possible, buy there are only men on that side. Thank you for your kindness and consideration. I read everyones posts daily, even thou I may be without cancer and cannot help to feel the disappointments and triumps with everyone's story. I hope that is okay with everyone. I weep when there is disappiontment and beam with sunshine when there is good news. Crazy? maybe, but its what has gotten me through this far.
  • deanna14
    deanna14 Member Posts: 732
    #6
    rimuga said:

    COBRA is definalty the
    COBRA is definalty the option for me. The payment is crazy, but I cannot take the chance. My mother is pushing me to get they hyst, which makes me feel uneasy, like maybe she isn't telling me everything. I am estranged from most of my maternal side of the family and my paternal side I do not know much about since I only met him once when I was 14. I have sent emails to a cousin on my paternal side to find as much history as possible, buy there are only men on that side. Thank you for your kindness and consideration. I read everyones posts daily, even thou I may be without cancer and cannot help to feel the disappointments and triumps with everyone's story. I hope that is okay with everyone. I weep when there is disappiontment and beam with sunshine when there is good news. Crazy? maybe, but its what has gotten me through this far.

    Strong and smart to seek opinions...
    I think you are smart to be proactive in seeking opinions from others. I would also encourage you to get a second opinion from another gynecologic oncologist. It is just a good idea and will offer you some peace of mind that your current doctors plan is the best way to handle your issues.
    I agree with Linda that you need to discuss with you physician if it is a good idea to leave the ovaries. If you have a family history of gyn cancers, then it might be a good idea to take the ovaries too. My doctor pretty much insisted that my ovaries come out, even though I was only 39 at the time of my hysterectomy. He said he had left the ovaries in others and always had to go back in at a later time to remove them, sometimes after several surgeries to try to preserve them. Also, as Linda said, the ovaries produce estrogen which feeds gyn cancers.
    Good luck with all of your decisions. Definately take the COBRA insurance, that is very important even though it is very expensive. It will be less expensive than having to self pay for medical bills! I hope you choose to get a second opinion. My prayers are with you during this time of difficult decisions.
    Hugs!
  • livenow09
    livenow09 Member Posts: 60
    #7
    deanna14 said:

    Strong and smart to seek opinions...
    I think you are smart to be proactive in seeking opinions from others. I would also encourage you to get a second opinion from another gynecologic oncologist. It is just a good idea and will offer you some peace of mind that your current doctors plan is the best way to handle your issues.
    I agree with Linda that you need to discuss with you physician if it is a good idea to leave the ovaries. If you have a family history of gyn cancers, then it might be a good idea to take the ovaries too. My doctor pretty much insisted that my ovaries come out, even though I was only 39 at the time of my hysterectomy. He said he had left the ovaries in others and always had to go back in at a later time to remove them, sometimes after several surgeries to try to preserve them. Also, as Linda said, the ovaries produce estrogen which feeds gyn cancers.
    Good luck with all of your decisions. Definately take the COBRA insurance, that is very important even though it is very expensive. It will be less expensive than having to self pay for medical bills! I hope you choose to get a second opinion. My prayers are with you during this time of difficult decisions.
    Hugs!

    TAB (total abdominal hysterectomy)
    don't like to give much advice BUT think you should either get a second opinion or flat out tell the dr to take the ovaries; agree with others... what's the rationale for keeping the ovaries?...so you can wonder about cancer in the future, especially with your family history; isn't once ENOUGH; your brain makes estrogen....

    good luck...we're here to listen

    Marie
  • rimuga
    rimuga Member Posts: 13
    #8
    livenow09 said:

    TAB (total abdominal hysterectomy)
    don't like to give much advice BUT think you should either get a second opinion or flat out tell the dr to take the ovaries; agree with others... what's the rationale for keeping the ovaries?...so you can wonder about cancer in the future, especially with your family history; isn't once ENOUGH; your brain makes estrogen....

    good luck...we're here to listen

    Marie

    Had the colonoscopy today
    Had the colonoscopy today and it was clear. Yeah! So at least now they know that the growths are on the outer part of my uterus, not on my colon. Got the news from a cousin on my father's side of the family that three of my father's brothers have died from colon cancer. My pre-surgical appt. with my doctor is on the 15th, and I will address him about taking the ovaries too. My hyst. surgery is on July 17th. Thank you all for responding. Will I have to do another bowl prep before this surgery?
  • deanna14
    deanna14 Member Posts: 732
    #9
    rimuga said:

    Had the colonoscopy today
    Had the colonoscopy today and it was clear. Yeah! So at least now they know that the growths are on the outer part of my uterus, not on my colon. Got the news from a cousin on my father's side of the family that three of my father's brothers have died from colon cancer. My pre-surgical appt. with my doctor is on the 15th, and I will address him about taking the ovaries too. My hyst. surgery is on July 17th. Thank you all for responding. Will I have to do another bowl prep before this surgery?

    bowel prep
    I had to do a bowel prep for my hysterectomy.
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #10
    deanna14 said:

    bowel prep
    I had to do a bowel prep for my hysterectomy.

    I too had to do bowel prep before surgery
    And the clear liquid diet, too. They want to make sure everything is cleaned out. Good luck.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #11
    Ro10 said:

    I too had to do bowel prep before surgery
    And the clear liquid diet, too. They want to make sure everything is cleaned out. Good luck.

    You'll be glad your stomach and bowels are empty, post surgery.
    The hardest part of the hysterectomy are the couple of days before your digestive and bowel system re-awakens from the anesthesia. When the hospital delivered food to me right after my hysterectomy, I was a good girl and always ate it. Within 2 days I was sorry that I had packed all of the food into me, as I had no bowel function and was really uncomfortable. At least when you start out with an empty bowel, you are that far ahead of the challenge ahead of voiding your bowels after surgery. That's why I urge you to 'fiber-up' now before surgery to get your digestive system in top working order, and to go easy on the pain meds afterwards if you can.
  • Unknown
    Unknown
    #12
    This comment has been removed by the Moderator

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