Cervical cancer? Waiting is hard!

susan492green
susan492green Member Posts: 5
edited March 2014 in Gynecological Cancers (other than ovarian and uterine) #1
I am new here and very confused...I have been trying to figure out what is going on since february. My story starts with heavy periods and lots of between period spotting for the last year (my mother said not to worry about it, perimenapause...I am 41). Then about 6 months ago I started having light bleeding during and after sex, I blamed it on a tilted uterus and the perimenapause thing...Had my regualar annual GYN appt in feb (normal pap and neg HPV) and joked that I never knew when my period would be as I was bleeding 3 weeks out of every month. My Dr. decide that I needed an endometrial biopsy (showed abnormalities/polyps) this prompted a saline sonogram which showed diffused thickening and a 1cm echogenic ovarian tumor, this prompted an D&C/Hysteroscopy which showed no abnormalities or polyps, which prompted A COLPOSCOPY (Dr. saw extensive abnormalities extending well up into canal w/ acid wash) with multiple cervical biopsies (all came back neg.) and a new pap/hpv (pap came back w/ gr 2 squalmous lesions and HPV was pos. for high rish HPV). I made an appt w/ a gyn/onc and called the Dr. for my records. He was very hostile and resistant but did fax them when I insisted. Has anyone else been through this sort of chain of events? I just want answers...Appointment isn't for 2 1/2 more weeks and I am kind of scared...please help if you can, I don't know what to think now.

Comments

  • JJHorner
    JJHorner Member Posts: 3
    #2
    Cervical Cancer?
    Susan, You have been getting pretty good treatment, however I think that your decision to seek out an gyn/onc was a great one. I had similar experiences and no matter what three different doctors tried, they still missed a tumor that I had until I began hemorrhaging and ended up in the emergency room and had to have an emergency D&C. They found the tumor and I saw an gyn/onc and was treated for cancer very quickly and I did very well. You are doing the right thing to make sure that you really are ok. The doctor that was treating you really should not have been so ugly, but that's not the first time I've heard of that happening, so don't feel bad. I hope all goes well for you and stay positive.
  • susan492green
    susan492green Member Posts: 5
    #3
    JJHorner said:

    Cervical Cancer?
    Susan, You have been getting pretty good treatment, however I think that your decision to seek out an gyn/onc was a great one. I had similar experiences and no matter what three different doctors tried, they still missed a tumor that I had until I began hemorrhaging and ended up in the emergency room and had to have an emergency D&C. They found the tumor and I saw an gyn/onc and was treated for cancer very quickly and I did very well. You are doing the right thing to make sure that you really are ok. The doctor that was treating you really should not have been so ugly, but that's not the first time I've heard of that happening, so don't feel bad. I hope all goes well for you and stay positive.

    Thank you so much for your
    Thank you so much for your response, this can be a very isolating experience. As it happens the gyn/onc reviewed my records and they called me today and said that they need me to be there first thing Monday morning instead of waiting for 6/21...Maybe waiting wasn't so bad after all...this kind of urgency is kind of unsettling.
  • beckyracn
    beckyracn Member Posts: 322
    #4
    susan492green said:

    Thank you so much for your
    Thank you so much for your response, this can be a very isolating experience. As it happens the gyn/onc reviewed my records and they called me today and said that they need me to be there first thing Monday morning instead of waiting for 6/21...Maybe waiting wasn't so bad after all...this kind of urgency is kind of unsettling.

    Susan,
    It sounds as if
    Susan,
    It sounds as if you've really had a rough time of it, but that things are really starting to fall into place for you. Yes, it can feel very isolating. Come here to voice all your worries. There are some great women here who've been through the journey your embarking on...and they love to share...and care. Keep us posted.
    A survivor and still fighting!
  • susan492green
    susan492green Member Posts: 5
    #5
    beckyracn said:

    Susan,
    It sounds as if
    Susan,
    It sounds as if you've really had a rough time of it, but that things are really starting to fall into place for you. Yes, it can feel very isolating. Come here to voice all your worries. There are some great women here who've been through the journey your embarking on...and they love to share...and care. Keep us posted.
    A survivor and still fighting!

    I am heartened
    I am heartened by the amazing women here that are survivors, and your warmth and empathy. I am sitting at home trying to keep my mommy smile in place (single mom, sole custody and my kids are 10 & 11 and have no idea anything is wrong)and trying not to self diagnose anymore than I can help...You women are truly inspirational and as terrified as I am right now, it is comforting to see the survival instinct and support that you all share. Thank you. I will post more after my onc appt on Monday, I have the feeling this is going to be a long road... Thank you all again for your amazing example of bravery and humanity.
  • beckyracn
    beckyracn Member Posts: 322
    #6
    susan492green said:

    I am heartened
    I am heartened by the amazing women here that are survivors, and your warmth and empathy. I am sitting at home trying to keep my mommy smile in place (single mom, sole custody and my kids are 10 & 11 and have no idea anything is wrong)and trying not to self diagnose anymore than I can help...You women are truly inspirational and as terrified as I am right now, it is comforting to see the survival instinct and support that you all share. Thank you. I will post more after my onc appt on Monday, I have the feeling this is going to be a long road... Thank you all again for your amazing example of bravery and humanity.

    Susan,
    I know how hard it is
    Susan,
    I know how hard it is to keep that mommy smile in place and avoid self diagnosing...keep your chin up. You'll have your answers soon, they might not be what you want to hear, but a burden will lift because you have the truth. I can only hope for you that what is going on is some benign issue, but it doesn't sound like it. I hope you have a great support team out there, because you may be stepping onto the roller coaster ride of your life...and when you say, "I want off"...no one listens. Do you have someone to accompany you to your appointment on Monday? Keeping my fingers crossed for you!
    ((HUGS))
  • susan492green
    susan492green Member Posts: 5
    #7
    beckyracn said:

    Susan,
    I know how hard it is
    Susan,
    I know how hard it is to keep that mommy smile in place and avoid self diagnosing...keep your chin up. You'll have your answers soon, they might not be what you want to hear, but a burden will lift because you have the truth. I can only hope for you that what is going on is some benign issue, but it doesn't sound like it. I hope you have a great support team out there, because you may be stepping onto the roller coaster ride of your life...and when you say, "I want off"...no one listens. Do you have someone to accompany you to your appointment on Monday? Keeping my fingers crossed for you!
    ((HUGS))

    And back up to the top of the ride...
    Saw the onc today...I walked in to the examination room and she said "Why do you look so stressed? This is no big deal" WHAT??? It turns out that my appointment got moved up because she had a cancellation, not because her review of my chart indicated haste, she agrees that this should be addressed with her staff so that they clarify this when they call new patients to move up appointments. Everything she said was the exact opposite of what my ob/gyn has been saying for 3 months now. She did another colposcopy and decided based on that to do another endocervical biopsy (I think my cervix must look like swiss cheese by now...) and did ask if I have ever had a "procedure" on my cervix, then said HMMMM when I said not outside of the colposcopy 2 wks ago, realized later that I should have asked her what she meant and maybe asked more questions re/ the ovarian tumor etc, but I was struck dumb with gratitude over the whole "you're not dying anytime soon" feel to the appointment. Confirmed abnormal pap, high risk HPV etc, but seemed VERY unconcerned. Said she will address the bleeding issues etc. when the biopsy comes back next week. I am confused and have been running over everything from the last 3 months to determine if I somehow missunderstood what I was told (nope!) right now I am just very relieved. I saw Dr. Lisa Anderson, head of GYN/ONC at St. Lukes Roosevelt in NYC, so I'm sure her opinion trumps my regular ob/gyn. So what do you think? Am I in the clear or just getting ready for another drop...?
  • beckyracn
    beckyracn Member Posts: 322
    #8
    susan492green said:

    And back up to the top of the ride...
    Saw the onc today...I walked in to the examination room and she said "Why do you look so stressed? This is no big deal" WHAT??? It turns out that my appointment got moved up because she had a cancellation, not because her review of my chart indicated haste, she agrees that this should be addressed with her staff so that they clarify this when they call new patients to move up appointments. Everything she said was the exact opposite of what my ob/gyn has been saying for 3 months now. She did another colposcopy and decided based on that to do another endocervical biopsy (I think my cervix must look like swiss cheese by now...) and did ask if I have ever had a "procedure" on my cervix, then said HMMMM when I said not outside of the colposcopy 2 wks ago, realized later that I should have asked her what she meant and maybe asked more questions re/ the ovarian tumor etc, but I was struck dumb with gratitude over the whole "you're not dying anytime soon" feel to the appointment. Confirmed abnormal pap, high risk HPV etc, but seemed VERY unconcerned. Said she will address the bleeding issues etc. when the biopsy comes back next week. I am confused and have been running over everything from the last 3 months to determine if I somehow missunderstood what I was told (nope!) right now I am just very relieved. I saw Dr. Lisa Anderson, head of GYN/ONC at St. Lukes Roosevelt in NYC, so I'm sure her opinion trumps my regular ob/gyn. So what do you think? Am I in the clear or just getting ready for another drop...?

    Susan,
    Lots and lots of
    Susan,
    Lots and lots of questions...good, keep it up. I always left the doctors office with tons of questions that I forgot to ask or questions about what they said and didn't ask them to clarify. Sounds like you have a good doc and I believe they almost become immune to the individuality of patients. I know I'm guilty of that as an RN. Are you clear or just getting ready for another drop??? Time will tell. Did you have the right to get all stressed when you thought your appt. was moved up because she received your records...YES! About a week prior to my next scan or doc appt. my stress levels skyrocket...part of the process. Then you go in there and they act so mundane. At nineteen months my pap came back bad, high grade HPV back (there had never been mention of it before), and the doc is like "We'll do a colposcopy (took nine sections) and we'll see you in six months" Sure, no problem doc. UGHHHHHHHH! They've taken so many biopsies that I believe my cervix looks like swiss cheese also. Quite possibly, I will end up with no cervix, GOOD, but not via surgery.
    Keeping my fingers crossed for you!

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