Mood of the day: hopeful

momspot

You have all been soooo supportive and helpful that I wanted to update you on what's going on for me. I had my pre-op appointment with my gyn yesterday. It was very good to get to talk to her face to face. The ct scan looked good. Nothing going on with any of my other organs other then a huge collection of kidney stones (which I already knew about.) The only other thing it showed was that the lining of my uterus was quite thick and she suspected some polyps and of course my complex cyst and nodule were still in residence on the ovary. So along with removing the right ovary she is going to remove the uterine lining as well. She said the surgery may take longer and she may have to make a bigger incision depending on what it looks like when she gets in so I may have an overnight hospital stay instead of getting to go home.

My bloodwork was also fine. I told her if she suspected cancer at all why not just do the hysterectomy and get it over with? She said that if it was cancer I did not want her doing the surgery that she would send me to a specialist who was trained to get it all and give me the best chance. But we wouldn't really know until surgery. We discussed doing a CA 125 and decided to wait. It won't make my surgery any sooner and if it is elevated I will be much more worried for the next two weeks. She is going to do it the day of surgery. She said she did not truly believe that it was cancer.

So I a hopeful. Don't get me wrong...I'm still not as sure as she is. I guess partially because the cyst rarely hurts. I have had cysts on my ovaries since I was 18 and I always knew they were there because they were painful. Even at this one's advanced size it rarely bothers me. Only when my bladder is full or after my pelvic exam yesterday (indeed that was some clench your teeth pain). And partially because I have night sweats and run a low grade fever alot. And because I'm soooo tired. I thought I knew what tired was but the last three weeks it's all I can do to move. I guess that's what worries me the most about chemo...i can't imagine being more fatigued!

So please keep your fingers crossed for me that it turns out not to be cancer. My surgery is on august 12. And I am nervous. I hate surgery. I will keep checking in with you all because I will being sending positive thoughts your way that everyone's treatment works, that remissions hold, and you all stay strong. You are a wonderful group of ladies who did not hesitate to reach out with words of wisdom and helping hands. Thank you all sooo much.

momspot

jane65

momspot
Hi,
I don't think I've seen your posts here, in the past.

Reading your post, I first wondered why you weren't having a complete hysterectomy?

Your GYN is removing one ovary, and the lining of your uterus so why not just remove all the female organs, unless you're planning to have more children. A complete hysterectomy would mean you wouldn't have to be concerned in the future, about cancer in any of those organs.

She's right that if there is cancer, you don't want her doing the surgery, you'd want a GYN/ONC surgeon who is specially trained in female cancers and will check all your abdominal organs to be sure they're clear of cancer.


I'm sorry, and I don't want to worry you, but if she even suspects cancer, why didn't she refer you to a specialist?
In that case, if it is cancer, you'd only need one surgery, not the 2 she talks about.

Regarding the CA125, again why hasn't it been done, I don't understand her logic, that she doesn't want to worry you.

She shouldn't say definitively that the ovary cyst is benign until the pathology report is back after surgery.

Once again I'm sorry, and I understand that this reply may upset you, but I had a hysterectomy in 1983, one ovary was left, and now I have OVCA.
I was also misdiagnosed having all the symptoms of OVCA for 6 months in 2007, until my new GYN picked up the cancer.

Since you still have time, have you considered getting another opinion?

I'm just thinking of your health, I'm definitely not trying to scare you.

Jane

momspot

jane65 said:

momspot
Hi,
I don't think I've seen your posts here, in the past.

Reading your post, I first wondered why you weren't having a complete hysterectomy?

Your GYN is removing one ovary, and the lining of your uterus so why not just remove all the female organs, unless you're planning to have more children. A complete hysterectomy would mean you wouldn't have to be concerned in the future, about cancer in any of those organs.

She's right that if there is cancer, you don't want her doing the surgery, you'd want a GYN/ONC surgeon who is specially trained in female cancers and will check all your abdominal organs to be sure they're clear of cancer.


I'm sorry, and I don't want to worry you, but if she even suspects cancer, why didn't she refer you to a specialist?
In that case, if it is cancer, you'd only need one surgery, not the 2 she talks about.

Regarding the CA125, again why hasn't it been done, I don't understand her logic, that she doesn't want to worry you.

She shouldn't say definitively that the ovary cyst is benign until the pathology report is back after surgery.

Once again I'm sorry, and I understand that this reply may upset you, but I had a hysterectomy in 1983, one ovary was left, and now I have OVCA.
I was also misdiagnosed having all the symptoms of OVCA for 6 months in 2007, until my new GYN picked up the cancer.

Since you still have time, have you considered getting another opinion?

I'm just thinking of your health, I'm definitely not trying to scare you.

Jane

Thank you Jane for the
Thank you Jane for the reply! You didn't scare me...I've been scared since the last ultrasound. I know there's still a possibility that it's cancer especially with all the other symptoms I've been having. I think the hesitation in referral is because we don't have a gyn/oncologist anywhere near us. She'd have to send me to St. Louis 2 hours away. And to get a new patient appointment will take at least a month anyway. If the ct scan had not been clear and it looked like there were any spots anywhere else, believe me I would have insisted on being sent to a specialist before being opened up.

I honestly don't know why she's not doing the full hysterectomy. I don't plan on having more children and my husband had a vascectomy after our third child anyway. I guess the economy being what it is...they are trying to avoid tests and surgeries that aren't absolutely necessary?

Thanks again for your reply. I was suprised to see that no one else had. Maybe they think I am being foolish? I don't know. It's very confusing. She seemed so positive that i wanted to trust her. Surely between the ct and ultrasound they can have a good idea whether its cancer or not?

momspot

groundeffect

momspot said:

Thank you Jane for the
Thank you Jane for the reply! You didn't scare me...I've been scared since the last ultrasound. I know there's still a possibility that it's cancer especially with all the other symptoms I've been having. I think the hesitation in referral is because we don't have a gyn/oncologist anywhere near us. She'd have to send me to St. Louis 2 hours away. And to get a new patient appointment will take at least a month anyway. If the ct scan had not been clear and it looked like there were any spots anywhere else, believe me I would have insisted on being sent to a specialist before being opened up.

I honestly don't know why she's not doing the full hysterectomy. I don't plan on having more children and my husband had a vascectomy after our third child anyway. I guess the economy being what it is...they are trying to avoid tests and surgeries that aren't absolutely necessary?

Thanks again for your reply. I was suprised to see that no one else had. Maybe they think I am being foolish? I don't know. It's very confusing. She seemed so positive that i wanted to trust her. Surely between the ct and ultrasound they can have a good idea whether its cancer or not?

momspot

Drive!
You really need to see a gynecologic oncologist before proceding!

I don't want to be an alarmist, but if there's one thing most of the women on this board would say to you, is don't have a surgery such as this done by a surgeon who doesn't specialize in gynecologic oncology.

My gyn found the uterine cancer I had, and recommended I make an appointement with a gyn/onc two hours from my home for my surgery. It was well worth the time and effort it took. Don't sell yourself short by trying to take it easy-make an appointment with a gyn/onc in St. Louis (even if it takes a month to get in). You may be surprised with how quickly you get in. I called a recommended gyn/onc earlier this month for an appt., and was in within two weeks.