Help needed with right questions to ask - starting exploratory

blueroses

I have posted on this board before as I was just told that they have found a 'node' in my right ovary and was looking for some help in it all. I am just at the exploratory stage but have a history of non hodgkins lymphoma and so this node is worrisome. I have had the pelvic ultrasound and an internal exam was done (nothing was felt that was unusual) but that is as far as I have gotten in exploratory.

July 10th is when I see the Gyno again for her conclusions and suggestions as we go forward into looking into this node. Hopefully it will be benign but I know I have to be prepared. I am wondering if those of you who have been through this, or similar, could supply me with smart questions to ask the Gyno at this stage of the investigation? I would appreciate any help as this is a whole new type of cancer which I know little about.

Thanks for your time. Blessings, Blueroses

jane65

Blueroses
Hi Blueroses,
I can understand that this node on your ovary is so concerning to you, especially since you've already had to deal with such a serious disease.

I think that when you go to the GYN it will be a mostly listening meeting for you. The doctor will have had this talk many times, and he'll probably answer many of your questions without you asking them.

You don't have a diagnosis yet, and thankfully the pelvic ultrasound and internal exam were negative. That's such a good sign, did you have a CA125 done yet? That would be a good question for your list.
Next I would ask about having a scan to see what's going on in your body, or is that how they found the node?

I would definitely get a referral to a GYN/ONC surgeon and be sure to get copies of all of your tests to take with you.

Are you still in contact with your oncologist, maybe you should give his office a call and make an appointment.

I hope these suggestions helped, and take someone with you for support, and to help you remember all the info. you're sure to get.
I wish you good health,
Jane

kayandok

jane65 said:

Blueroses
Hi Blueroses,
I can understand that this node on your ovary is so concerning to you, especially since you've already had to deal with such a serious disease.

I think that when you go to the GYN it will be a mostly listening meeting for you. The doctor will have had this talk many times, and he'll probably answer many of your questions without you asking them.

You don't have a diagnosis yet, and thankfully the pelvic ultrasound and internal exam were negative. That's such a good sign, did you have a CA125 done yet? That would be a good question for your list.
Next I would ask about having a scan to see what's going on in your body, or is that how they found the node?

I would definitely get a referral to a GYN/ONC surgeon and be sure to get copies of all of your tests to take with you.

Are you still in contact with your oncologist, maybe you should give his office a call and make an appointment.

I hope these suggestions helped, and take someone with you for support, and to help you remember all the info. you're sure to get.
I wish you good health,
Jane

I agree with Jane
Hi blue, you have received good advice from Jane. The only thing I could add is get that CA125, I think I mentioned to you in an earlier post.
Wishing you the best,
kathleen:)

BonnieR

Hugs
Hi Blue, Sorry you have to deal with this stress, once we have had cancer our mind goes there right away. So far it sounds like the test are pointing to something else but a ca125 is a good idea(although not the best detector) and the visit with the gyno on the 10th. Keep us posted on how things are going. Hugs ♥ Prayers Bonnie

blueroses

jane65 said:

Blueroses
Hi Blueroses,
I can understand that this node on your ovary is so concerning to you, especially since you've already had to deal with such a serious disease.

I think that when you go to the GYN it will be a mostly listening meeting for you. The doctor will have had this talk many times, and he'll probably answer many of your questions without you asking them.

You don't have a diagnosis yet, and thankfully the pelvic ultrasound and internal exam were negative. That's such a good sign, did you have a CA125 done yet? That would be a good question for your list.
Next I would ask about having a scan to see what's going on in your body, or is that how they found the node?

I would definitely get a referral to a GYN/ONC surgeon and be sure to get copies of all of your tests to take with you.

Are you still in contact with your oncologist, maybe you should give his office a call and make an appointment.

I hope these suggestions helped, and take someone with you for support, and to help you remember all the info. you're sure to get.
I wish you good health,
Jane

Thanks Jane
Thank you for your information and suggestions. One point though that I probably didn't explain properly was that my pelvic ultrasound did show the node but it's small, the internal exam showed nothing that she could feel but I am pretty sensitive so not sure how thorough the exam was. Unfortunately there is no one I can ask to go with me but I do take a note pad and write things down so I will do that.

I still hold out hope all goes well and this turns out to be nothing but as you said after my battle with NHL and knowing there is a chance it could be ovarian better safer than sorry.

Thanks again for your input. Blessings, Blueroses

blueroses

BonnieR said:

Hugs
Hi Blue, Sorry you have to deal with this stress, once we have had cancer our mind goes there right away. So far it sounds like the test are pointing to something else but a ca125 is a good idea(although not the best detector) and the visit with the gyno on the 10th. Keep us posted on how things are going. Hugs ♥ Prayers Bonnie

Thanks Bonnie
Hi there. Actually I discussed that C125 with the Gyno when I saw her the first time but she made it sound as if it wasn't always what it seemed to be in results so I figured that at this point I may as well wait to see what the pelvic showed and the radiologist's theories on course of action. So I will have to wait til the 10th to see what the Gyno says and take it from there. I might look for a second opinion first before anything goes ahead. Blessings, Blueroses

blueroses

kayandok said:

I agree with Jane
Hi blue, you have received good advice from Jane. The only thing I could add is get that CA125, I think I mentioned to you in an earlier post.
Wishing you the best,
kathleen:)

Thanks Kathleen
Yes I remember you mentioned that in another post but as I mentioned here to one of the other posts I decided to leave that test til the pelvic ultrasound was in and it is now and it shows the node so that test might be next. For some weird reason here in Canada where I live we have to pay for the C125 test when all our other tests are free, odd. Well I say free but we are pretty heavily taxed up here so in the end we do pay it just looks free up front. lol. Visits to doctors and specialists and all testing like CT scans and xrays and MRI's are all free but with the baby boomers getting older our 'free' system is creaking at the seams - like us boomers. lol. Anywho the C125 will obviously be money well spent if this turns out to be something serious. I am and have been getting low back pain, like that achy pain before a period, and I can't help but feel it is linked. My GP said no way can that small a node cause that but I'm not so sure. Anywho thanks for the posting. Take care. Blessings, Blueroses.

Cindy54

blueroses said:

Thanks Bonnie
Hi there. Actually I discussed that C125 with the Gyno when I saw her the first time but she made it sound as if it wasn't always what it seemed to be in results so I figured that at this point I may as well wait to see what the pelvic showed and the radiologist's theories on course of action. So I will have to wait til the 10th to see what the Gyno says and take it from there. I might look for a second opinion first before anything goes ahead. Blessings, Blueroses

Your Questions
Hi Blu. I was in much the same boat...I had no one to come with me in my meeting with the surgeon. I had already had a CA125 test and the reading was normal, under 20, the doctor said. I had no pain and had gone through an early menopause. I just went for a gyno visit. The doctor felt something and sent me for the internal sono and the external sono. I had no other scans. They saw that my right ovary had a cyst that was pretty large. So they scheduled surgery for it. We were going to do laprascopy, the small belly button surgery, but the cyst had grown too large and attached to the stomach wall. So they did the cut. It was a full hysterectomy. They then sent out biopsies to a lab that came back with hints of ovarian. So then they did the staging surgery. I asked about the CA125 results..the doctor said they are not always showing a true picture of what is going on inside. But it is something to consider, especially since you have already had one type of cancer.Did you also have an external sonogram? That might be something to think about also. And if they are thinking about surgery, will they do a hysterectomy and take some biopsies? It is almost always a given that this "node" will have to be removed some way. I don't think they will do a wait and see, given your history. And then if it comes back as being something, they will more than likely do the staging surgery to see if anything has spread anywhere else. And just what is this node they are mentioning? Have they mentioned any clue as to whether it is solid or fluid filled? I am sure your doctor will be providing all kinds of info, so yes, you will most probably be listening a lot. Write some things down if you need to, I did.And if you feel you would like a second opinion, I think that might help set your mind at ease. I had no choice in my doctors, but I was lucky in that they spoke clearly, honestly and I could not have asked or hoped for a better outcome.Keep us posted as to what you decide. And a huge hug to you, I know it is not easy to do these doctor visits on your own. Cindy

blueroses

Cindy54 said:

Your Questions
Hi Blu. I was in much the same boat...I had no one to come with me in my meeting with the surgeon. I had already had a CA125 test and the reading was normal, under 20, the doctor said. I had no pain and had gone through an early menopause. I just went for a gyno visit. The doctor felt something and sent me for the internal sono and the external sono. I had no other scans. They saw that my right ovary had a cyst that was pretty large. So they scheduled surgery for it. We were going to do laprascopy, the small belly button surgery, but the cyst had grown too large and attached to the stomach wall. So they did the cut. It was a full hysterectomy. They then sent out biopsies to a lab that came back with hints of ovarian. So then they did the staging surgery. I asked about the CA125 results..the doctor said they are not always showing a true picture of what is going on inside. But it is something to consider, especially since you have already had one type of cancer.Did you also have an external sonogram? That might be something to think about also. And if they are thinking about surgery, will they do a hysterectomy and take some biopsies? It is almost always a given that this "node" will have to be removed some way. I don't think they will do a wait and see, given your history. And then if it comes back as being something, they will more than likely do the staging surgery to see if anything has spread anywhere else. And just what is this node they are mentioning? Have they mentioned any clue as to whether it is solid or fluid filled? I am sure your doctor will be providing all kinds of info, so yes, you will most probably be listening a lot. Write some things down if you need to, I did.And if you feel you would like a second opinion, I think that might help set your mind at ease. I had no choice in my doctors, but I was lucky in that they spoke clearly, honestly and I could not have asked or hoped for a better outcome.Keep us posted as to what you decide. And a huge hug to you, I know it is not easy to do these doctor visits on your own. Cindy

Great suggestions Cindy, thanks
I never thought of an external ultrasound so I will definitely ask and I thought of the biopsy idea of all the areas if they go in big time to take out the node. I think the problem at this time is that the node is so small they can't tell anything about it at all so both myself and my GP hope that that being the case we can grab it all without much other surgery to the area unless of course it looks weird when they go in, or they see other things that tip them off.

I know for sure though that it has grown in the last few months because when they found in a couple of months ago while doing other surgery the radiologist went back one CT scan and apparently it was there then too but the radiologist who read that CT missed it. Grrrrrrrrrrrrrr. I don't think it's much more than 7 months old but could be wrong. Man I get CT's all the time and to think they MISSED IT just baffles me, especially considering my history. Anywho I am glad that I had that kidney stone now boy and it made a home in my bladder instead of passing because if not who knows how long it would have taken to discover.

I think that the biggest difficulty I am having now is that I have this weird period like back pain that isn't part of my regular back pain and I just know that it's related. Some days it's worse than others so it's a constant reminder nothing is being done in trying to figure out what it is. The meeting is July 10th with this Gyno who I'm not crazy about but I don't want to get another one now as I want her feedback but if I can get a second opinion quickly I will do that and probably switch. I don't mind admitting I am a big baby as far as pain and treatment are concerned from a doctor and this one seems a bit too cold and abrupt for me. If I am going to go through this all again, and I still don't know what this is yet, but if it turns out for the worse I want someone I can talk to in a doc who will be sensitive to all the invasive treatments I have been through. My GP gets that and will refer me to someone else but it would be dumb to start all over and miss one Gyno's opinion so close to the date of the appointment.

Yup it's a bit of a bummer going in to an appt like this alone, she could say anything at this point, but I have no choice. I really should get a taperecorder or something but I don't think all docs are comfortable with them and I don't want an uncomfortable situation. I will just ask questions and if she gets ticked at me, I'm outta there. I will work on a good list of questions to ask her so I don't forget any so all of these suggestions really help.

Thanks again Cindy for your help. Hope you are doing alright. Blessings, Blueroses