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New here and blindsided by this New here and blindsided by this

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  #11  
Unread 10-09-2011, 06:27 AM
Re: New here and blindsided by this

Just want to say I am sorry sweetie. Lots of prayers your way.
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  #12  
Unread 10-10-2011, 08:43 AM
Re: New here and blindsided by this

Hey guys -

So today or tomorrow, I'm supposed to get the results of the 125 blood test. I'm not sure I understand really what the purpose of these results are because I understand that they can be very inaccurate.... but for some reason the results are going to determine the date of my surgery. October 19th if the results are "good" and October 26th if they are bad.

Today is the first day that I'm going to attempt to go to work since my Wednesday night ER visit. I took a 1/4 xanex pill but somehow I don't think that's gonna be enough to get me halfway normally through a day of waiting for my phone to ring with this news.

Once I have this news, whatever it is, I have to then come to some kind of conclusion of what I want them to remove. I have to have the full surgery where they open me up because the Oncologist GYN says he needs to see everything to make certain there is no cancer, so they're suggesting taking "everything" while they're in there, since I'm not planning on having kids. But I'm 43 years old and I wasn't planning on having menopause for a while either. I have no clue what to do and I've only had 5 days to wrap my head around any of this and I have to admit that I'm not doing well at all.

I guess I'm just asking for good thoughts and good mojo. And wondering if there are other people on this board who got all this thrown at them so suddenly and how they're coping with it. I just wanna shake and cry and sleep and cry.
  #13  
Unread 10-10-2011, 09:16 AM
Re: New here and blindsided by this

  Quote:
Originally Posted by suedeblue View Post
Hi all you nice people -

I'm not even sure where to start. I'm 43 years old, married with no children, and this only started two days ago for me.

i came home from work Wednesday with the worst stomach pains ive ever had. At 6pm I hurt so bad I had my husband take me to the emergency room.

I was in the emergency room until around 3 am. blood work, then xrays and a cat scan and a sonigram. And lots of pain meds. Got shot up with morphine 3 times, that's how bad it hurt.

turns out i have two masses on or near my overies. they sent me yesterday morning to my GYN who then wanted to send me to a Oncolgist GYN in case there is any cancer. The GYN also did a different kind of blood test to determine cancer, we'll have those results monday or tuesday.

This morning I went to the Oncolgist GYN to talk about having surgery to have these masses removed. The regular gyn wants me to do the surgery with this oncolgist GYN in case they open me up and findany cancer which is possible even if the blood tests dont see it. Both of these doctors seem to be recommending a full hysterectomy if the
masses, or cysts, or whatever they are attached to my ovaries.

I was supposed to go to my stepdaughter's wedding on the 21st of this month up in NJ and then I was supposed to go to Jamaica at the end of this month to celebrate my 11th wedding anniversary.

Just this past Wednesday at 3pm i was at a little shop down the street buying 3 new outfits for jamaica. Now I'm crying my eyes out and looking at major surgery. amazing.

talk about being blindsided.
I also went to the ER with severe abdominal pain. After about a month it became worse and I could not take it anymore. They did an abdominal CT and blood work. Gave me some pain medication and sent me home, not feeling any better I wen to my primary care physican. She sent me to an GYN and after he did some test referred me to an GYN/ONC to have my ovaries remove. At this appointment he decided I needed an TAH/BSO with an vertical incision. I feel worse since my August appointment and will be seeing him 10/11. Wishing you the very best.
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  #14  
Unread 10-10-2011, 09:58 AM
Re: New here and blindsided by this

suedeblue

Here is an article on the ca-125 test

I had cancer surgery and it was done laproscopically. It is not a given amymore that if you have cancer you have to have an abdominal incision. If you are concerned about it ask your oncologist they may not be trained in this technique and you may want to explore other options. However that being said you should base your decision on the best fit and best qualified surgeon because laproscopic equipment is still only a tool so you want the best dr.

If you look at the hysterectomy checkpoints there is a pre-op tab that gives you some general questions to ask your dr.

  #15  
Unread 10-10-2011, 04:49 PM
Re: New here and blindsided by this

Thanks again, Touruslady. (Our birthdays are probably close, I'm an Aries-lady) I've been reading about this CA 125 and I do see how inaccurate it can be, which keeps me wondering why they did it and why I'm so preoccupied with the results. They did not call me (or answer the phone) today so I guess I'll have the results tomorrow. Which means another xanex morning for me.

Another thing I read somewhere else about things that can raise your levels on this test is if you're on your period when they take the blood, which I was. I just really don't know what to think about anything.

The doctor told me at my meeting with him that he had to do the surgery as abdominal because he won't REALLY know what's going on until he can actually see the two masses that I have in there, and the only way to do that is by opening me up. Very scary.

Please forgive me because you've been so kind and I've only spoken about myself. I see you had your surgery in 2008. Are you okay? I have so many questions. I wish you were here. I'd give you a glass of wine and ask you to tell me everything.
  #16  
Unread 10-10-2011, 04:56 PM
Re: New here and blindsided by this

suede

Mine is late april, my dh is an aries late march

Ask away.

I just want to reinforce that if your surgeon is trained in davinci some gyn-oncs believe the view is better because the camera get closer to the organs than the eyes can. My gyn-onc told me that some drs palpate or feel the organs and that is one way to determine if cancer is present. They think doing the surgery laproscopically doesn't allow them to do that. My onc felt like he has that touch with the instruments. You can check out the videos in both the hysterectomy type and the cancer
categories for information on this.

Anyway, i can pour that glass of wine and we can have that virtual conversation so ask away.

  #17  
Unread 10-12-2011, 08:55 AM
Re: New here and blindsided by this

I STILL haven't gotten any results. I guess maybe today. I'm still not sure why the results of the 125 test matter so much. I still haven't come to any major conclusions except that ideally I'm feeling like I don't want them taking out any more of me than they absolutely have to when they open me up. I'm taking tomorrow off work. Gonna put my questions in a list form and see if I can get some phone time with the doctor's assistant so I can ask them. When I first met with her last Friday, which was only two days after this whole nightmare began, I was still in too much shock to really ask anything. I'll let you know if I get results today. Today is one week since I had any indication of any problem. I wish I just had a time machine.
  #18  
Unread 10-12-2011, 10:03 AM
Re: New here and blindsided by this

Usually the ca125 is a marker for ovarian cancer but not definitive. I had endometrial and even though my gyn/onc did not know for sure if my ovaries were involved he did not believe that the 125 would tell him anything. They go by the cat scan and the surgery outcome.
Hugs and best wishes, fingers crossed.
  #19  
Unread 10-12-2011, 11:06 AM
Re: New here and blindsided by this

  Quote:
Originally Posted by chryvine View Post
Just want to say I am sorry sweetie. Lots of prayers your way.
Our hysterectomies are scheduled the same day. I wish you the very best and a speedy recovery.
  #20  
Unread 10-12-2011, 03:55 PM
Re: New here and blindsided by this

Thanks for all the answers. My ca125 came back today with a normal level, so even if that's not exactly a "relief" for me, it's at least not another thing for me to lose my mind over. Tonight I'm going to write down a list of questions and tomorrow I'm gonna "try" to get on the phone with the ONC/GYN's office assistant woman who I met during my visit who said I could come to her with questions. Last week I think I was too in shock by everything to even ask a coherent question. Tomorrow maybe she can answer some of the things you guys have pointed out and help me try to formulate a plan.
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