Update - unsure of significance

DeniseLR

I'm finally getting a few answers, but nothing definitive.

The endiometrial biopsy from last week was okay. My CA-125 was slightly elevated. Very slightly. It was only 37. My doctor said she'd be happy if it were less than 10, okay with 35, but 37 is considered elevated and she's concerned enough to do some more tests.

I had a pelvic ultrasound and a transvaginal ultrasound Tuesday. My uterus is too high for her to see all of it, and she coudn't see her ovaries. I didn't know you should expect to see ovaries in a pelvic ultrasound.

Wednesday I had a CT scan. She'll call me if the results are anything to be concered about.

April 26 I go in for a hysteroscopy and D&C. I'm so tired all the time, and I'm still bleeding - it's been 3 1/2 weeks - sometimes heavy, sometimes light (I though it wouldn't be heavy any more after I started the Aygestin). Oh well.

Just sort of nervous and wanted to talk. I haven't told anyone yet what's going on except my immediate family.

So there you go.
Denise

groundeffect

Please look at my personal web page to see my experience - your story sounds somewhat like mine. I had to look up Aygestin to see what the drug is, and I noticed the contraindications include "undiagnosed vaginal bleeding". My gyn had me take a double shot of Depo-Provera; that brought my bleeding under control, and is not supposed to cause any clotting problems.

Do you have any leg swelling? Deep vein thrombosis (DVT)could be a real concern; if you have any swelling or other symptoms of DVT, please talk to your doctor right away about it.

I would also suggest you ask your doctor about a color doppler transvaginal ultrasound. I was told at a lecture this is a much more effective tool if cancer is a possible concern, because it would show up as a "hot spot" because of increased blood flow (I had a regular transvaginal ultrasound and a CAT scan that didn't show my problems, other than fibroid tumors that I knew I had).

You're probably tired because your red blood cells are being depleted by the blood flow (again, I'm talking from experience), so you should have a blood count done as soon as possible, and start building your blood back up, too.

I don't know what your relationship is with your doctor is like, but having to wait until April 26 seems like a long time to have to wait for more testing-maybe you could push to have that moved up, too.

My heart goes out to you. I hope I haven't scared you, but it seems as though many docs take a wait-and-see atitude that turns out badly for those in need of an early diagnosis. The fact that you are tired and worried isn't helping you.

I wish you the best outcome possible!

DeniseLR

groundeffect said:

Please look at my personal web page to see my experience - your story sounds somewhat like mine. I had to look up Aygestin to see what the drug is, and I noticed the contraindications include "undiagnosed vaginal bleeding". My gyn had me take a double shot of Depo-Provera; that brought my bleeding under control, and is not supposed to cause any clotting problems.

Do you have any leg swelling? Deep vein thrombosis (DVT)could be a real concern; if you have any swelling or other symptoms of DVT, please talk to your doctor right away about it.

I would also suggest you ask your doctor about a color doppler transvaginal ultrasound. I was told at a lecture this is a much more effective tool if cancer is a possible concern, because it would show up as a "hot spot" because of increased blood flow (I had a regular transvaginal ultrasound and a CAT scan that didn't show my problems, other than fibroid tumors that I knew I had).

You're probably tired because your red blood cells are being depleted by the blood flow (again, I'm talking from experience), so you should have a blood count done as soon as possible, and start building your blood back up, too.

I don't know what your relationship is with your doctor is like, but having to wait until April 26 seems like a long time to have to wait for more testing-maybe you could push to have that moved up, too.

My heart goes out to you. I hope I haven't scared you, but it seems as though many docs take a wait-and-see atitude that turns out badly for those in need of an early diagnosis. The fact that you are tired and worried isn't helping you.

I wish you the best outcome possible!

I do have lower leg swelling. There are large bluish areas that are painful, and swelling from mid-calf to ankle. It's been happening gradually, and I haven't seen a doctor about it. My primary just left her practice to teach, so I guess I should see one of her partners and get it checked out. I haven't researched DVT, guess I should do that. My gyn did order a CBC which didn't show that I'm anemic, so I guess I just dismissed the tiredness as stress-related.
As far as relationship with my gyn, she's new to me. I haven't been with her long enough to know what her normal timetable is like. My original schedule with her about the bleeding was for 4/26, and when I called back on 3/19 she asked me to come in first thing the following morning (8:30). I really agree that 4/16 is a long time to wait. She said that's the first opening she had in her schedule.

Thanks for your advice, I'll check into symptons of DVT and I'll check out your personal web page.

groundeffect

DeniseLR said:

I do have lower leg swelling. There are large bluish areas that are painful, and swelling from mid-calf to ankle. It's been happening gradually, and I haven't seen a doctor about it. My primary just left her practice to teach, so I guess I should see one of her partners and get it checked out. I haven't researched DVT, guess I should do that. My gyn did order a CBC which didn't show that I'm anemic, so I guess I just dismissed the tiredness as stress-related.
As far as relationship with my gyn, she's new to me. I haven't been with her long enough to know what her normal timetable is like. My original schedule with her about the bleeding was for 4/26, and when I called back on 3/19 she asked me to come in first thing the following morning (8:30). I really agree that 4/16 is a long time to wait. She said that's the first opening she had in her schedule.

Thanks for your advice, I'll check into symptons of DVT and I'll check out your personal web page.

Denise, PLEASE go see a doctor as soon as possible! DVT can kill you quicker than anything else can, and a doctor will surely do something to help you out quickly! I had symptoms of it for months, but because I didn't have any pain, I tried to ignore it. I had too much else going on.

You don't need to see your gyn for the leg swelling. My doctor sent me right to the ER when I presented with shortness of breath, and asked her about the leg swelling.

The reported David Bloom suffered the worst outcome of DVT.

I think you should press for an earlier appointment with your gyn, also. I think three weeks is just too long to have to wait for more tests!

It's good that your CBC was all right, but you should still pursue finding out what's making you so tired.

Maybe you could ask to be put on a waiting list for possible cancellations with your gyn...

HeartJourney1

Hi Denise. I hope that you will update us with how you are doing. Meantime, I'll throw in my 2 cents worth. I bled for 6 months. I am thinking your tiredness is more related to stress right now than anything else. Yes, they should (and they want to) see the ovaries in the ultrasound.

If they (the medical team) suspect cancer, they will move quickly. Since you are scheduled for your procedure on April 26th, they must feel that is in time. I know how I felt when I was getting scheduled for my surgery. I wanted it YESTERDAY lol cause we knew I had cancer. So a time frame that is longer than a day or two can seem like forever for us, the ones on the wrong side of the scheduling desk.

You have concerns and they are entirely valid. Ask your doctors. Keep asking until you get answers. And if you aren't comfortable with your medical team, or don't trust them, find others.

A final thought... I didn't tell people either. Only my sister knew, at least at first. As I let others in on what was going on, it actually got better for me. My family was so loving and supportive, I never could have gotten through it without them. However, my "best friend" (at the time) was SO not there for me. That was hard. So in the end, I would suggest that... you tell people who you believe will be supportive... and that you pick and choose as well as you can.

One day at a time Denise. It's all we can do. I wish you the very best!

DeniseLR

HeartJourney1 said:

Hi Denise. I hope that you will update us with how you are doing. Meantime, I'll throw in my 2 cents worth. I bled for 6 months. I am thinking your tiredness is more related to stress right now than anything else. Yes, they should (and they want to) see the ovaries in the ultrasound.

If they (the medical team) suspect cancer, they will move quickly. Since you are scheduled for your procedure on April 26th, they must feel that is in time. I know how I felt when I was getting scheduled for my surgery. I wanted it YESTERDAY lol cause we knew I had cancer. So a time frame that is longer than a day or two can seem like forever for us, the ones on the wrong side of the scheduling desk.

You have concerns and they are entirely valid. Ask your doctors. Keep asking until you get answers. And if you aren't comfortable with your medical team, or don't trust them, find others.

A final thought... I didn't tell people either. Only my sister knew, at least at first. As I let others in on what was going on, it actually got better for me. My family was so loving and supportive, I never could have gotten through it without them. However, my "best friend" (at the time) was SO not there for me. That was hard. So in the end, I would suggest that... you tell people who you believe will be supportive... and that you pick and choose as well as you can.

One day at a time Denise. It's all we can do. I wish you the very best!

Thanks a lot, Ground and Heart.

I've been laying low for a few days. I have pneumonia, and am sticking pretty close to my Lazy Boy and my inhaler.

I have finally stopped bleeding (4 weeks, 1 day), and I'm going to have my records transferred from my Primary to a new doctor. Then I'll make an appointment to discuss the possibility of DVT. Right now there's not much I can do at all, because I just can't stop coughing.
Heart, thanks for sharing that you were selective in who you chose to tell. I still haven't told anyone but immediate family. Unfortunately, I found out that my husband told a friend from church, and I really don't want anyone to know yet. This could turn out to be not a big deal (right?), and I just want to have control over who knows and who doesn't. She said she'll not tell anyone else.

You guys feel like a lifeline to me. I really appreciate the encouragement you give.

groundeffect

DeniseLR said:

Thanks a lot, Ground and Heart.

I've been laying low for a few days. I have pneumonia, and am sticking pretty close to my Lazy Boy and my inhaler.

I have finally stopped bleeding (4 weeks, 1 day), and I'm going to have my records transferred from my Primary to a new doctor. Then I'll make an appointment to discuss the possibility of DVT. Right now there's not much I can do at all, because I just can't stop coughing.
Heart, thanks for sharing that you were selective in who you chose to tell. I still haven't told anyone but immediate family. Unfortunately, I found out that my husband told a friend from church, and I really don't want anyone to know yet. This could turn out to be not a big deal (right?), and I just want to have control over who knows and who doesn't. She said she'll not tell anyone else.

You guys feel like a lifeline to me. I really appreciate the encouragement you give.

I have to say that I did have one "good" friend who initially contacted me when she heard I'd been diagnosed with cancer. She expressed concern, and asked what had happened, and after I replied (we were emailing), she didn't reply, and I wasn't surprised. She had spent a lot of time in hospitals when she was a kid, and seems to have an unreasonable amount of fear of them as an adult. I have a sister who spent two years as a teenager, having multiple operations for scoliosis, who is not anywhere near as afraid!

Denise, I have also sent you a message off this board. I'm glad to hear you'll be seeing another doctor!