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Have some questions Have some questions

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  #1  
Unread 02-13-2012, 08:14 PM
Have some questions

Hi Sisters!

I'm new here & have some questions that I feel like I'm not getting answers from my gyn. I have family history of ovarian cancer (mother), grandmother had stomach cancer & sister had colon cancer, my dad had Hodgkin's lymphoma; all of them are deceased from it.

I've had numerous cysts on my ovaries & fibroids on my uterus. I have been getting a CA125 & transvaginal ultrasound every yr for about 10 yrs. This past yr has been really awful, periods are very painful & bleeding has been heavier than normal. My gyn finally agreed (after I pleaded with him) to do a hysterectomy on 3/21/12. To make a long story short, the ultrasound I had last month for severe pain showed endometrial complex that measures 17mm, a 9mm anterior fibroid & a 1.8cm anterior uterine fundus, also have a 9mm complex cyst on my left ovary. My family dr showed me the report & said to make sure I follow up with this because he didn't like what he saw. My gyn told me not to worry about it because it was just a few cysts & an enlarged uterus.

I am a nervous wreck with all of this. I know I need to have the surgery but just wonder what else is he not telling me.

I really appreciate this website, have learned so much already!

Thanks,
Maureen
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  #2  
Unread 02-13-2012, 08:36 PM
Re: Have some questions

Maureen, I'm so sorry about your family history, sounds like you have been through an awful lot. I'm not a doctor so I don't want to interpret the findings but what jumped out at me was that you had to talk your gyn into a hysterectomy. With your family history, I would strongly recommend you see a gyn-oncologist versus a regular gyn, NOT because of your specific findings, but just to be sure your doctor is seeing everything (you, your family history) globally, vice just the gyn aspect, and who will not need to be talked into something but who will be proactive in recommending good responses to your medical issues. While it's been far from ideal, I have been going between 4 doctors leading up to my hysterectomy - My medical oncologist for the breast cancer I had and who put me on a medication that riled the fibroids I had, the nurse practioner at my primary doc's office who is very knowledgeable, my primary gyn whom I really like and respect but just didn't get the cancer concerns/link between the medication and the fibroids (and recommended against hysterectomy), and finally the gyn-onco someone recommended to me who immediately "got it", validated my concerns, is a good listener, gentle, AND a great surgeon. Have you also checked into whether your surgery could be done laparascopically (minimally invasive), if there is a good experienced surgeon in your area? That was in part why I went with my gyn-onco.

I also had 10 years of ultrasounds every year to follow fibroids, ovarian cysts, etc and finally just had enough of it all. But it's so important to find the right health provider to talk to and who will answer all your questions, especially ahead of any surgery.

Take good care
  #3  
Unread 02-13-2012, 09:11 PM
Re: Have some questions

I agree with Carolinagurl. I think you need to see a gyn onc. That is who did my surgery (large ovarian complex cyst). My CA125 was normal, but another test OVA1 was elevated. The pathology was done in the OR and all was benign. BUT, if it had not been benign, then the gyn onc could have explored further.

I also lost my mom due to non-Hodgkins lymphoma, and my maternal grandmother due to colon cancer. So, I know how scary it is for there to be something growing inside with a cancer family history.

Good luck to you.

(((Hugs)))
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  #4  
Unread 02-13-2012, 09:27 PM
Re: Have some questions

Carolinagrl42, so sorry to hear that you've been going through alot yourself, will keep you in my thoughts & prayers for good health!! I am going to call tomorrow to see if I can get an appt with a gyn oncologist. Thank you again for your reply, it's really making me feel better knowing that there are women out there who I can talk to.

marestail, I forgot to mention that the last CA125 came back normal (per my gyn). I just feel uneasy with the last ultrasound report that I called the gyn's office back today & asked for copies of the last 5 ultrasounds, (he said they were normal). Thanks again for your response also.

Take care!
  #5  
Unread 03-05-2012, 07:23 PM
Re: Have some questions

Just wanted to give an update. My gyn canceled my hysterectomy due to getting a 2nd opinion from a gyn-onc. I sent her my medical records, office notes, etc for her to review before she could see me. (That was like pulling teeth with my gyn's office.) Anyways, she said she could talk to me about getting genetic testing due to my family history but that was about it. She couldn't do anything because she said she didn't think I have cancer. I'm not sure what to think about all of this now.

I have an appt with a new gyn tomorrow that my PCP referred me to, hopefully he will do the hysterectomy soon.

I have been having so much pain that some days it's hard to function.

Thanks for listening.
  #6  
Unread 03-05-2012, 07:58 PM
Re: Have some questions

I was going to suggest that perhaps genetic screening would be something to look in to.I am having it done because my family has the Lynch Syndrome gene. I am also going to gyn-onc and that has made a big difference. I hope it all works out. Please keep us posted.

  Quote:
Originally Posted by moered View Post
Just wanted to give an update. My gyn canceled my hysterectomy due to getting a 2nd opinion from a gyn-onc. I sent her my medical records, office notes, etc for her to review before she could see me. (That was like pulling teeth with my gyn's office.) Anyways, she said she could talk to me about getting genetic testing due to my family history but that was about it. She couldn't do anything because she said she didn't think I have cancer. I'm not sure what to think about all of this now.

I have an appt with a new gyn tomorrow that my PCP referred me to, hopefully he will do the hysterectomy soon.

I have been having so much pain that some days it's hard to function.

Thanks for listening.
  #7  
Unread 03-05-2012, 08:09 PM
Re: Have some questions

LAReed,

Thanks for your response. I think deep down I'm afraid to find out if I do have the Lynch Syndrome gene. I worry about my 2 daughters having to do through all of this someday.

I will give an update tomorrow after my appt. thanks again.
  #8  
Unread 03-05-2012, 08:24 PM
Re: Have some questions

But knowing is a good thing. They can be screened and followed closely and may be able to avoid what we are going through. An ounce of prevention....is worth a pound of cure.

  Quote:
Originally Posted by moered View Post
LAReed,

Thanks for your response. I think deep down I'm afraid to find out if I do have the Lynch Syndrome gene. I worry about my 2 daughters having to do through all of this someday.

I will give an update tomorrow after my appt. thanks again.
  #9  
Unread 03-13-2012, 06:52 PM
Re: Have some questions

Hi...Just wanted to give another update..I went to my new gyn who is wonderful, listened to all of my concerns & agreed that I should have a LAVH/BSO on 4/10/12. I also found out that my old gyn never told me that my last CA125 was not normal as he told me it was but it was slightly elevated. He reassured me that everything was going to be ok & not to worry.

I just wanted to thank everyone for giving me good advice to get a second opinion. I feel more confident going into surgery knowing my doctor has not only the experience but I have trust in him to take care of me.

Thanks again,
Maureen
  #10  
Unread 03-13-2012, 07:59 PM
Re: Have some questions

Moered, SO glad you found a doctor you trust and who will help you - Best wishes for a smooth surgery/recovery and happier days ahead
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