Waiting for dx

momspot

Let me just start by saying I'm very glad to have found this discussion board!

I don't have a diagnosis yet...I go for an abdominal and pelvic ct scan w/contrast this afternoon and basic bloodwork. I have a surgery scheduled for august 12th to remove my right ovary and biopsy it. Here's my story:

I have been sick for over a year and a half. Last year I spent the majority of the year shuttling between doctors (nuerologists, rhuematologists, internists). Some told me I was depressed (not freakin likely) and finally one told me I had fibromyalgia. I went with this diagnosis as we had already ruled out MS through a spinal tap. I happily started taking my fibro meds and working out a schedule where my life was manageable. Things were not so bad. Then in March I started noticing alot of gas, nausea, indegestion and bloat. My lower back had been hurting ever since the spinal tap in January. I thought maybe it was the meds so let it go. Around the same time I started noticing some vague cramping in my pelvic area and my periods pretty much stopped altogether. Didn't bother me a bit after years of really heavy painful ones! But all my symptoms seemed like pregnancy even though that was an impossibility! In May I began to have some pain in my upper right quadrant right under my ribcage. It would hurt really bad for a day or two then go away for weeks.

Finally in June, I went to see my gyn and told her that I was having some pelvic pain and my periods had all but disappeared and (sex) was completely out of the question due to pain. She said the nonexistant periods were due to the bc pills she had me on. But I'd taken the same ones before without that result. I told her I thought I had a cyst on my right ovary, I'd had small ones before and that's what it felt like. She then asked if I wanted an ultrasound or to just let it go. I opted for ultrasound just to see. A couple of days after they called and said I had a cyst on both ovaries and scheduled a repeat ultrasound for july. I saw my GP shortly after that and he read me the ultrasound report...6cm cyst on the right ovary and 2 on the left. Well I'd had 2cm ones before and knew they hurt...why wasn't that 6cm one killing me? He was concerned but we opted to wait.

Fast forward to last week...my jeans no longer fit...I can only wear elastic waist pants because everything else is uncomfortable. I've noticed in pictures I look pregnant! The gyn office called first thing the morning after my 2nd ultrasound to schedule surgery to remove my right ovary. Very little explanation. I saw my GP yesterday, who again read me the report (bless that man!) Right cyst is a complex cyst (with fluid and solid) it is now 7cm and there is a suspicious nodule also growing in it. CT was indicated. Suspected cystadenocarcinoma. Suggest removal of ovary and biopsy. Because of the other symptoms my GP is sending me for the other tests. So here are my questions...

Does my gyn seem incredibly laid back or is that normal? I mean how did we get from "do you want an ultrasound" to "we need to remove your ovary" in one month???

Why are they just planning on removing the ovary? Doesn't that mean if it is malignant they have to open me back up and look for more?? I hate surgery!

I don't mean to sound "whiny" I know that many of you have been through hell and back and I'm either just starting the journey or only peeking inside. I have just tried to blow it off so much for family and friends so that they don't worry. I need someone I can be "real" with.

And really...I'm not given to hypochondria...in fact I hate being sick. But for months my gut instinct has been that something is really really wrong. And everyone keeps saying "think positive". But I just want to find out what's going on so I can "think positive" about the best treatment and getting well!

Thanks for reading this. I'm sorry it was so long but I wanted to paint an accurate picture. I would be very interested to read anyone else's experience. Thanks again.

momspot

Susan523

Momspot~
I'm far from being a Dr., but it seems to me that your Gyn should be a little more aggressive in finding out what this is; or even refer you out to an Oncologist/Gynecologist. Do you know
if there's one in your area? They would specialize and be able to give you some answers. I
realize that with most insurances you may need a referral for a specialist, but if it were me,
I'd look into that right away. Don't put it off.

And your CT Scan should give some results.

You don't sound whiny at all, hun, and don't ever apologize here. We all whine from time to time, and this is the place where people completely understand and care. And if you don't want to whine publicly, you can always e-mail me privately :-) dogsmom@charter.net

Good luck to you, and let's pray you get your diagnosis soon.

~Susan xoxo

TDodds68

cyst
I too would see a gyn/oncologist but curious did they do a CA-125 blood test on you as well. I had major pelvic pain and had to go to ER when they did an ultrasound they found a 15cm cyst on my right ovary and 0.8 on my left they didn't like the looks of it either so they did a CA-125 which was around 1,300 so they sent me for an CT scan my gyn/oncologist said with the looks of the mass and the elevated CA-125 levels he was pretty sure it was cancer every time he did my blood it was rising. They scheled me for surgery 2 days later for a full hysterectomy it was malignant but in stage 1. He also found a spot on my lung on the CT scan but was unsure what it was. X-ray didn't help to see it better he was going to redo the CT scan but since I am doing chemo he decided not to worry about it, he said if it was cancer the chemo should take care of it. Although what worries me is if it is/was cancer I really would not be in stage 1 but stage 3. I go in tomorrow for my 3rd chemo appt. 3 more to go.

LPack

CA125
I would request taking the CA 125 test. And then if elevated I would WANT a total hysterectomy. I am no doctor either, but what most of us have been through here with elevated counts, and growing cysts on the ovaries ..............

Remember IF it is Ovarian Cancer - it whispers and that is why we should LISTEN to our symptoms. And we never really know it is Ovarian Cancer until we have the surgery.

Ask this board anything. Each of us has a different story. ☺

In His Grip,
Libby

BonnieR

Echoing Loud
Dearest Momspot, the women who have replied already have given you such wonderful advice. All I can say is I echo there advice loud and clear. Prayers N Hugs Bonnie

momspot

BonnieR said:

Echoing Loud
Dearest Momspot, the women who have replied already have given you such wonderful advice. All I can say is I echo there advice loud and clear. Prayers N Hugs Bonnie

Thank you all so much for
Thank you all so much for your replies. I had the ct done yesterday and figured if there was anything really bad they would call me today. Is it pathetic that when I did recieve a phone call from our clinic...I didn't answer? I had just gotten up and didnt think I could handle it yet. It was actually my gyn's office calling to see if I could move my pre-op appt to this friday instead of next week. Since she didn't order the scan I don't think it was related to that, I think she's going out of town.

No, they haven't done a CA-125. I will definately ask about it friday though. I will have a million questions for her, believe me!

And no, we do not have gyn/oncologist here in my area. There is one in Springfield (two hours away), and there are several in St. Louis (also two hours away). And yes, if it's truly cancer, I will insist that I be sent to one of them. I don't care about the inconvencience...I just want to be sure I have the best chance.

Also, I found out from a friend (who works in the surgery department at the hospital) that the surgery nurses do not think my gyn is a very good surgeon! She mentioned another gyn in town whom they think much more highly of. But being a new patient, I don't know how quickly I could get an appointment and hate to put off the surgery. My gosh, this is all sooo confusing. And my husband is no help. I mean he is...he's wonderful really...but he just says "do what you think needs to be done". What kind of an opinion is that? lol.

Thank you again for answering my post. I have to admit I was feeling pretty alone. And I hate having to push the doctors to do their jobs.

momspot

TDodds68 said:

cyst
I too would see a gyn/oncologist but curious did they do a CA-125 blood test on you as well. I had major pelvic pain and had to go to ER when they did an ultrasound they found a 15cm cyst on my right ovary and 0.8 on my left they didn't like the looks of it either so they did a CA-125 which was around 1,300 so they sent me for an CT scan my gyn/oncologist said with the looks of the mass and the elevated CA-125 levels he was pretty sure it was cancer every time he did my blood it was rising. They scheled me for surgery 2 days later for a full hysterectomy it was malignant but in stage 1. He also found a spot on my lung on the CT scan but was unsure what it was. X-ray didn't help to see it better he was going to redo the CT scan but since I am doing chemo he decided not to worry about it, he said if it was cancer the chemo should take care of it. Although what worries me is if it is/was cancer I really would not be in stage 1 but stage 3. I go in tomorrow for my 3rd chemo appt. 3 more to go.

Good luck with your chemo!
Good luck with your chemo! Regardless of the staging...I hope the chemo knocks it out.

saundra

momspot said:

Thank you all so much for
Thank you all so much for your replies. I had the ct done yesterday and figured if there was anything really bad they would call me today. Is it pathetic that when I did recieve a phone call from our clinic...I didn't answer? I had just gotten up and didnt think I could handle it yet. It was actually my gyn's office calling to see if I could move my pre-op appt to this friday instead of next week. Since she didn't order the scan I don't think it was related to that, I think she's going out of town.

No, they haven't done a CA-125. I will definately ask about it friday though. I will have a million questions for her, believe me!

And no, we do not have gyn/oncologist here in my area. There is one in Springfield (two hours away), and there are several in St. Louis (also two hours away). And yes, if it's truly cancer, I will insist that I be sent to one of them. I don't care about the inconvencience...I just want to be sure I have the best chance.

Also, I found out from a friend (who works in the surgery department at the hospital) that the surgery nurses do not think my gyn is a very good surgeon! She mentioned another gyn in town whom they think much more highly of. But being a new patient, I don't know how quickly I could get an appointment and hate to put off the surgery. My gosh, this is all sooo confusing. And my husband is no help. I mean he is...he's wonderful really...but he just says "do what you think needs to be done". What kind of an opinion is that? lol.

Thank you again for answering my post. I have to admit I was feeling pretty alone. And I hate having to push the doctors to do their jobs.

Get a gyn/onc
You have a much higher rate of survival if you have a gyn/onc do your surgery that a poor gyn, if this is ovarian cancer. The CT scan will be conclusive. Get a copy of that report for your records. Get a CA-125 blood test and get proactive. Do not play around with your symptoms. Saundra

momspot

saundra said:

Get a gyn/onc
You have a much higher rate of survival if you have a gyn/onc do your surgery that a poor gyn, if this is ovarian cancer. The CT scan will be conclusive. Get a copy of that report for your records. Get a CA-125 blood test and get proactive. Do not play around with your symptoms. Saundra

I just called the my GP's
I just called the my GP's office and asked him to order a CA-125 test. Had to leave a voicemail...but his nurses will get back to me. Does anyone know how long it takes to get the results back? It would be nice if everything was back by the time I see my gyn on friday. Then maybe I'd have some back up in asking her to recommend an gyn/oncologist. I'm sure they think I'm an overeacting lunatic currently. =]

Spot

Carolhodnett

Please get the best Dr. you can get
I've read your post and the replies and I have to agree and urge you to make very sure you get the very best doctor you can get to do your surgery. I too suggest a gynocological oncologist. This is their area of expertise and they know what they are looking for and right then and there they can remove the problem. You deserve to have the very best of care and I hope you won't settle for anything less. Your life is too important. I made sure that my surgeon was very highly regarded and I chose a hospital with an excellent reputation. I had to travel a little distance but it was worth it. Please be proactive and demand the best for you too. It does matter. Carol

carol2dogs

momspot said:

Thank you all so much for
Thank you all so much for your replies. I had the ct done yesterday and figured if there was anything really bad they would call me today. Is it pathetic that when I did recieve a phone call from our clinic...I didn't answer? I had just gotten up and didnt think I could handle it yet. It was actually my gyn's office calling to see if I could move my pre-op appt to this friday instead of next week. Since she didn't order the scan I don't think it was related to that, I think she's going out of town.

No, they haven't done a CA-125. I will definately ask about it friday though. I will have a million questions for her, believe me!

And no, we do not have gyn/oncologist here in my area. There is one in Springfield (two hours away), and there are several in St. Louis (also two hours away). And yes, if it's truly cancer, I will insist that I be sent to one of them. I don't care about the inconvencience...I just want to be sure I have the best chance.

Also, I found out from a friend (who works in the surgery department at the hospital) that the surgery nurses do not think my gyn is a very good surgeon! She mentioned another gyn in town whom they think much more highly of. But being a new patient, I don't know how quickly I could get an appointment and hate to put off the surgery. My gosh, this is all sooo confusing. And my husband is no help. I mean he is...he's wonderful really...but he just says "do what you think needs to be done". What kind of an opinion is that? lol.

Thank you again for answering my post. I have to admit I was feeling pretty alone. And I hate having to push the doctors to do their jobs.

You are your best advocate
Hi, Momspot!
Welcome to this board, although sorry if you end up with the ovarian cancer diagnosis. I totally agree with Saundra - be proactive and push as hard as you can. My symptoms were very similar to yours - my initial diagnosis was constipation even though I said I was regular. Yes, you need an ONC/GYN if the CT shows probable OVCA. It will be well worth the drive - my doc is about 90 minutes away. Please, please insist on the CA125 test this Friday. You are not at all whiny - you have every right, and responsibility to pay attention to your symptoms.
Please keep us updated. We care and you absolutely can be real here.
Love and hugs, Carol

JoanC

momspot said:

I just called the my GP's
I just called the my GP's office and asked him to order a CA-125 test. Had to leave a voicemail...but his nurses will get back to me. Does anyone know how long it takes to get the results back? It would be nice if everything was back by the time I see my gyn on friday. Then maybe I'd have some back up in asking her to recommend an gyn/oncologist. I'm sure they think I'm an overeacting lunatic currently. =]

Spot

CA125 test
Should not take more than 24 hrs for the test...insist that you have one!
~Joan

lnyeholt

Carolhodnett said:

Please get the best Dr. you can get
I've read your post and the replies and I have to agree and urge you to make very sure you get the very best doctor you can get to do your surgery. I too suggest a gynocological oncologist. This is their area of expertise and they know what they are looking for and right then and there they can remove the problem. You deserve to have the very best of care and I hope you won't settle for anything less. Your life is too important. I made sure that my surgeon was very highly regarded and I chose a hospital with an excellent reputation. I had to travel a little distance but it was worth it. Please be proactive and demand the best for you too. It does matter. Carol

What type of surgery?
Is your surgery to do the biopsy being done laparascopically, robitically, or with an incision? If the latter, you should definitely have a gyn/oncologist do surgery so someone experienced in onhand to do debulking if cancer is present. The other two are not as invasive so I'm guessing that you could be referred on to the oncologist if debuling is necessary.

Is it possible to do a quick phone consult with one of the gyn/oncologists before your Friday surgery?

momspot

lnyeholt said:

What type of surgery?
Is your surgery to do the biopsy being done laparascopically, robitically, or with an incision? If the latter, you should definitely have a gyn/oncologist do surgery so someone experienced in onhand to do debulking if cancer is present. The other two are not as invasive so I'm guessing that you could be referred on to the oncologist if debuling is necessary.

Is it possible to do a quick phone consult with one of the gyn/oncologists before your Friday surgery?

First...my GPs office
First...my GPs office called. Said that the CA 125 is only ordered by Gyno so they wanted me to talk to her about that. Second...friday is just a pre op appt. The surgery is not scheduled til August 12th so I have time to maybe get a consult beforehand. I will ask my gyn for a CA 125 test on friday as well as why she didn't want to do one in the first place! Or maybe she was waiting for a face to face talk? The surgery on the 12th is supposed to be a laparascopy to remove the ovary. Then they can do the biopsy. So maybe she is waiting to refer until she is sure it is cancer. I'm just going to have to have a heart to heart with her on friday.

TDodds68

momspot said:

First...my GPs office
First...my GPs office called. Said that the CA 125 is only ordered by Gyno so they wanted me to talk to her about that. Second...friday is just a pre op appt. The surgery is not scheduled til August 12th so I have time to maybe get a consult beforehand. I will ask my gyn for a CA 125 test on friday as well as why she didn't want to do one in the first place! Or maybe she was waiting for a face to face talk? The surgery on the 12th is supposed to be a laparascopy to remove the ovary. Then they can do the biopsy. So maybe she is waiting to refer until she is sure it is cancer. I'm just going to have to have a heart to heart with her on friday.

momspot
Glad you have an appt set up. I was not in the same boat I had such pain in my abdomen I couldn't wait to have a reg dr. appt I had to go to ER the mass was turning my ovary backwards which is where the pain came from. They said it was good that I had since it could have ruptured and had killed me. I had my 3rd chemo today since I had such pain I had a early diangosis stage 1c I also asked for my CA-125 was 2838 before surger, after surgery it went down to 52, after 1st chemo 12, after 2nd chemo 8. Have 3 weeks to go to see what it is after my 3rd round today. I have 3 rounds of chemo left. I also asked about the spot on my lung they said the chemo is taking care of it so they are not worried about it but if it was cancer it would have been staged differently

I would have thought if this person is not a gyn/onc and he thinks this is cancer he would want you to do your surgery with one in case it is cancer and it has spread so he could do debulking surgery like checking lymph nodes, ovary, uteris, etc. not just take out cyst or ovary. My gyn/onc suggested doing a full hysterectomy and also checked lymph nodes and also found cancer with fluid he used nn my abdomen.

Unknown

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