Seeking Advice-14cm cyst on left ovary

rosie46

Hi Ladies,

I'm 46 and I found out last week I have a 14cm cyst on my left ovary. This was found through ultrasounds my doctor ordered due to my lower abdomen sticking out while lying down. One was pelvic and other transvaginal. Ob doctor gave me the CA125, did cervical biopsies, and biopsied a cervical polyp. She said the CA125 was okay, and biopsies benign. The ob is planning on getting the cyst out laproscopically. She said if they see a borderline cyst, everything will be removed.

I need some advice and these are questions I have. What is borderline? I would like an MRI to see if it is benign or not before surgery. Is this a good idea and reasonable request? Should I request an oncology gynecologist to do the surgery? I have a regular ob doing it, and they say they won't get an oncology gynecologist unless during the surgery they see something and call one in last minute. I think this is backwards, why not have one doing it in the first place? What are some other good questions to ask and what would you do? I will also ask the doctor, but wanted to see what you ladies have to say as well.

I told her I want to keep my ovaries. If I can't keep the one the cyst is on, I want to keep the other one. I would like to keep everything because I already have bladder issues due to this pushing down on my bladder, my mom has alzheimers and losing my ovaries will affect my mental capacity sooner (I already forget streets in my town), I already have low bone density due to taking depo provera in my twenties, and I don't want to lose my sex drive.

Will I be able to request this even if suspicion of cancer? I'm thinking they think it's benign but can't really be sure until they go in and biopsy the actual cyst. This is why I would like an MRI before surgery.

Thank you for any advice!

Sincerely,

Rosie

 

Tethys41

Surgery

Hi Rosie,

You ask a lot of good questions.  I was in a similar situation 10 years before my diagnosis of cancer.  I had one ovary removed for what ended up being endometriosis and told my gynecologist before the surgery that I wanted to keep all my other organs, including the unaffected ovary. 

It is normal for the gynecologist to do this surgery, since there does not appear to be any indication there is cancer involved.  Mine also had a gynecologic oncologist on standby when I had my one ovary removed, just in case.  There really is no diagnostic test, not even an MRI, that can determine whether or not the cyst is beneign.  It really needs to go to pathology during your surgery to determine this.  You are probably not being referred to a gynecologic oncologist for your surgery because they don't typically become involved unless cancer is suspected and your tests do not indicate it is.

You may want to consider what they might find during your surgery.  A good question to ask your doctor.  I had not idea, when I had the one ovary removed, that it could be something that would require further treatments down the line.  My endometriosis required regular visits to my gynecologist and repeated efforts to keep further cysts under control on my one remaining ovary.  I also didn't know at the time that I was BRCA positive, which predisposed me to ovarian cancer, which I ended up with 10 years later.  Certainly if I had known these things when I had my one ovary removed, I would have opted to have a complete hysterectomy.  When I went in for that surgery, my doctor wanted to know if there was someone he could ask if decisions had to be made during the procedure.  I didn't have anyone to make any decisions for me.  My alternative option was to have the surgey done with an epidural, which meant I would be awake and able to make decisions during the procedure.  I was having a lapraotomy, where they opened me up and I didn't want to be awake for it, so opted out.  But in hindsight, that might have been a good idea. 

Borderline is a type of ovarian cancer.  If they determine it is cancerous, they will want to take all your reproductive organs out.  You certainly don't want the other ovary lurking around if the one is cancerous. 

Good luck.  I hope all goes well. 

 

rosie46

Tethys41 said:

Surgery

Hi Rosie,

You ask a lot of good questions.  I was in a similar situation 10 years before my diagnosis of cancer.  I had one ovary removed for what ended up being endometriosis and told my gynecologist before the surgery that I wanted to keep all my other organs, including the unaffected ovary. 

It is normal for the gynecologist to do this surgery, since there does not appear to be any indication there is cancer involved.  Mine also had a gynecologic oncologist on standby when I had my one ovary removed, just in case.  There really is no diagnostic test, not even an MRI, that can determine whether or not the cyst is beneign.  It really needs to go to pathology during your surgery to determine this.  You are probably not being referred to a gynecologic oncologist for your surgery because they don't typically become involved unless cancer is suspected and your tests do not indicate it is.

You may want to consider what they might find during your surgery.  A good question to ask your doctor.  I had not idea, when I had the one ovary removed, that it could be something that would require further treatments down the line.  My endometriosis required regular visits to my gynecologist and repeated efforts to keep further cysts under control on my one remaining ovary.  I also didn't know at the time that I was BRCA positive, which predisposed me to ovarian cancer, which I ended up with 10 years later.  Certainly if I had known these things when I had my one ovary removed, I would have opted to have a complete hysterectomy.  When I went in for that surgery, my doctor wanted to know if there was someone he could ask if decisions had to be made during the procedure.  I didn't have anyone to make any decisions for me.  My alternative option was to have the surgey done with an epidural, which meant I would be awake and able to make decisions during the procedure.  I was having a lapraotomy, where they opened me up and I didn't want to be awake for it, so opted out.  But in hindsight, that might have been a good idea. 

Borderline is a type of ovarian cancer.  If they determine it is cancerous, they will want to take all your reproductive organs out.  You certainly don't want the other ovary lurking around if the one is cancerous. 

Good luck.  I hope all goes well. 

 

Thank you!

I want to keep at least one or both ovaries if possible, even if surgery will be needed down the line. My husband will be there for the surgery, so I will make sure he knows he has to stay the whole time. I will ask our daycare to keep our kids until the surgery is over. I'm crazy but I do want the other ovary lurking around. I want the hormones because there is dementia in my family history, I have osteopenia and arthritis already, and I want to keep my sex drive. It's a catch 22 situation. I want to live, but I would rather live with a quality of life where I can do the same things I do now. I took depoprovera in my twenties and I went through a type of menopause, no period, no sex drive, etc. I don't want to go through that again, especially now that I'm married. There is HRT, but my mom had bad side effects from it and I don't want to go through that either. I just want to be rid of this pain in the least invasive way possible. Is there a way to make sure the doctor follows these wishes legally? I would like to make sure when I wake up from surgery that my wishes were followed.

rosie46

Not feeling well

Hi Ladies and Tethys41,

I have pain and burning/stinging where my right ovary is, feels like someone is stabbing it. It feels like it's near the urinary tract. Did any of you have this pain? I'm going to call the hospital tomorrow and see if I can see my doctor. I already went to the ER last Thursday because I had spotting and they gave me antibiotics for a UTI. Doctor said it's probably bleeding from the biopsies I had two weeks ago and that I got a UTI. I'm still having pain. I think I need another ultrasound to check the right ovary. Were you told not to take ibuprofen 7 days before surgery? I don't meet the surgeon until Thursday, but I think I'll email her tonight to see if it's okay, as I am in pain. My stomach is getting huge. Looking forward to getting this cyst out, but scared too. Need to give my worries to God.

Also, do you have any recommendations for questions to ask the surgeon? They're doing laproscopy to get out the 14cm cyst, which was measured from the ultrasound three weeks ago. Shouldn't they do another ultrasound? I feel like it's on the right, since that's where the pain is, but they say it's on the left ovary. I will be requesting to keep my ovaries, but I don't know what to ask. They've done a cervical biopsy, polyp removal, pelvic ultrasound, transvaginal ultrasound and CA125 test, which they say all came out ok.

Thank you for any advice!

Tethys41

Your wishes

Hi Rosie,

You should be signing paperwork prior to your surgery authorizing your surgeon to do specific things.  Be sure to read it and make sure the intention is to leave your other ovary behind. 

It is curious that the pain is on the opposite side from the cyst.  I, myself, have found that pain in that region can be non-descript.  For example, I felt like I had a raging UTI for a few weeks fow what turned out to be a kidney stone.  You can ask your doctor about another ultrasound but tests like that only give an impression of what is going on inside.  A surgery is more definitive in identifying what is really happening because they can actually see things.   

The one symptom that seems odd is your bloating.  Is it localized to the area where the cyst is located?  I would definitely check with your doctor about whether you can take pain medication prior to surgery.  When is it scheduled?  Hopefully you will sail through the surgery and all will be well.

I had Depoprovera in my 30s for endometriosis.  Honestly, the side effects were far worse than when I went through surgical menopause.  I managed my symptoms with acupuncture and Chinese herbs and felt almost no side effects from surgical menopause.  With everything that is going on, if it is an options for you, a naturopath or functional medicine doctor would be able to address your other issues, like osteopenia, arthritis and concerns over dementia.  Honestly, I was forced to learn how to take care of myself after my diagnosis and I feel so much better than I did for years before I was sick. 

 

Good luck

Butt

Borderline means precancerous. The surgeon will see it during the surgery most likely but it actually will be a pathology report that will make the final determination. You are premenopausal any way. They easiliy canvtake ovaries out and most likely Fallopian tubes. They do it laparoscopically now. My gynecologist neutered me pretty easily. Butt., PS if it is not cancer they can give you a small dose of hormones that is easy. But again you already based on your age not making a lot of them. It is really the minor surgery. 

rosie46

Tethys41 said:

Your wishes

Hi Rosie,

You should be signing paperwork prior to your surgery authorizing your surgeon to do specific things.  Be sure to read it and make sure the intention is to leave your other ovary behind. 

It is curious that the pain is on the opposite side from the cyst.  I, myself, have found that pain in that region can be non-descript.  For example, I felt like I had a raging UTI for a few weeks fow what turned out to be a kidney stone.  You can ask your doctor about another ultrasound but tests like that only give an impression of what is going on inside.  A surgery is more definitive in identifying what is really happening because they can actually see things.   

The one symptom that seems odd is your bloating.  Is it localized to the area where the cyst is located?  I would definitely check with your doctor about whether you can take pain medication prior to surgery.  When is it scheduled?  Hopefully you will sail through the surgery and all will be well.

I had Depoprovera in my 30s for endometriosis.  Honestly, the side effects were far worse than when I went through surgical menopause.  I managed my symptoms with acupuncture and Chinese herbs and felt almost no side effects from surgical menopause.  With everything that is going on, if it is an options for you, a naturopath or functional medicine doctor would be able to address your other issues, like osteopenia, arthritis and concerns over dementia.  Honestly, I was forced to learn how to take care of myself after my diagnosis and I feel so much better than I did for years before I was sick. 

 

Good luck

The surgery is tomorrow,

The surgery is tomorrow, Friday morning. The paperwork says surgeon will take out either the right or left ovary or bilateral. She said she would only do bilateral if both ovaries were affected, and the mass was attached to both. I told her my wishes, that I want to keep at least one. She said the mass is so big that she will more than likely need to remove the ovary with it if it's on the ovary. She talked with the oncologist and said the cyst on the ultrasound is liquid (dark) but also has septations on the bottom end. The oncologist said it could be precancerous due to the septations. It's so large that you can't see my ovaries on the ultrasound so she doesn't know for sure if it's on an ovary as the radiologist had said. She said she can only know when going inside for the laproscopy. She also put in the paperwork that if need be she will look at and maybe go inside my bladder. I feel better now that I've met her. She said she has done 100's of these type of surgeries and I felt she was genuine in wanting to be the least invasive as possible. If a cyst is precancerous do they usually take your ovaries, or is there a chance she would keep one?

Tethys41

rosie46 said:

The surgery is tomorrow,

The surgery is tomorrow, Friday morning. The paperwork says surgeon will take out either the right or left ovary or bilateral. She said she would only do bilateral if both ovaries were affected, and the mass was attached to both. I told her my wishes, that I want to keep at least one. She said the mass is so big that she will more than likely need to remove the ovary with it if it's on the ovary. She talked with the oncologist and said the cyst on the ultrasound is liquid (dark) but also has septations on the bottom end. The oncologist said it could be precancerous due to the septations. It's so large that you can't see my ovaries on the ultrasound so she doesn't know for sure if it's on an ovary as the radiologist had said. She said she can only know when going inside for the laproscopy. She also put in the paperwork that if need be she will look at and maybe go inside my bladder. I feel better now that I've met her. She said she has done 100's of these type of surgeries and I felt she was genuine in wanting to be the least invasive as possible. If a cyst is precancerous do they usually take your ovaries, or is there a chance she would keep one?

I hope all went well

Hi Rosie,

I am guessing you had your surgery already and you have answers to your question above.  I hope all went well and the surgeon was able to save at least one ovary.

We would love to get an update on how things went, when you feel up to it.

Feel better soon.

rosie46

Tethys41 said:

I hope all went well

Hi Rosie,

I am guessing you had your surgery already and you have answers to your question above.  I hope all went well and the surgeon was able to save at least one ovary.

We would love to get an update on how things went, when you feel up to it.

Feel better soon.

Surgery done

Hello Ladies:)

Surgery went well. Doctor took the right ovary and the cyst which was 16cm. She said the mass looked normal and sent it all to pathology. Results come back in two weeks. She also said the ovary had multiple cysts on it. The left ovary was healthy and normal so she left it alone. She got the mass out laproscopically which I think is a miracle and a fantastic surgeon. Surgery was at 12pm yesterday and left hospital same day at 530 or 6. My right side is very sore inside. I think it's not just the surgery though, I might have pulled a muscle or something from getting into this darn recliner. Slept in it last night. The handle is on the right and very hard to lift dumb me. Hopefully the pain subsides soon. How do you position yourself to be more comfortable? I'm taking Norco every six hours. I also am having issue with peeing, just a little comes out at a time. I'm hoping this is due to the anesthesia. Is this normal after abdominal surgery? This is the first surgery I've ever had and it went well but it's pretty painful on the one side and tight feeling in the middle inside. I think I'll call the surgeon today to ask about the peeing and inner pain on the right. Good idea? The other issue is the ache in the shoulder area from the air to inflate you. Is it better to sit upright than lay down? I find it's most comfortable laying back semi upright and legs bent with pillow underneath or just sitting up. Can't wait to feel better and heal. Glad surgery is over too since I was a nervous wreck but what a relief that thing is out. Thank you so much for your support! I will update with results when they come in. Love, Rosie

Tethys41

rosie46 said:

Surgery done

Hello Ladies:)

Surgery went well. Doctor took the right ovary and the cyst which was 16cm. She said the mass looked normal and sent it all to pathology. Results come back in two weeks. She also said the ovary had multiple cysts on it. The left ovary was healthy and normal so she left it alone. She got the mass out laproscopically which I think is a miracle and a fantastic surgeon. Surgery was at 12pm yesterday and left hospital same day at 530 or 6. My right side is very sore inside. I think it's not just the surgery though, I might have pulled a muscle or something from getting into this darn recliner. Slept in it last night. The handle is on the right and very hard to lift dumb me. Hopefully the pain subsides soon. How do you position yourself to be more comfortable? I'm taking Norco every six hours. I also am having issue with peeing, just a little comes out at a time. I'm hoping this is due to the anesthesia. Is this normal after abdominal surgery? This is the first surgery I've ever had and it went well but it's pretty painful on the one side and tight feeling in the middle inside. I think I'll call the surgeon today to ask about the peeing and inner pain on the right. Good idea? The other issue is the ache in the shoulder area from the air to inflate you. Is it better to sit upright than lay down? I find it's most comfortable laying back semi upright and legs bent with pillow underneath or just sitting up. Can't wait to feel better and heal. Glad surgery is over too since I was a nervous wreck but what a relief that thing is out. Thank you so much for your support! I will update with results when they come in. Love, Rosie

Congratulations

I'm glad it went so well, Rosie.  Sounds like it turned out perfectly.  I really can't answer your questions, as I've never had laproscopic surgery.  Athough not being able to pee much doesn't sound normal.  So you should contact your doctor about that.  Are you drinking enough water?  It' amazing she could remove such a large cyst laproscipically.  When I had the 9 cm one removed, the doctor told me no way could he do it that way.  I hope your pain subsides soon.

Take care

rosie46

Tethys41 said:

Congratulations

I'm glad it went so well, Rosie.  Sounds like it turned out perfectly.  I really can't answer your questions, as I've never had laproscopic surgery.  Athough not being able to pee much doesn't sound normal.  So you should contact your doctor about that.  Are you drinking enough water?  It' amazing she could remove such a large cyst laproscipically.  When I had the 9 cm one removed, the doctor told me no way could he do it that way.  I hope your pain subsides soon.

Take care

Hi Tethys41,

I think now the inability to empty my bladder completely was due to the lingering anesthesia and from the Norco. My doctor called me yesterday and let me know the pathology results were benign. I'm wondering if the botched hsg I had 7 years ago caused these cysts to grow but I'll never know. I'm just glad to have them out and be done with the surgery. Take care and thank you for all your help! Love, Rosie

Tethys41

rosie46 said:

Hi Tethys41,

I think now the inability to empty my bladder completely was due to the lingering anesthesia and from the Norco. My doctor called me yesterday and let me know the pathology results were benign. I'm wondering if the botched hsg I had 7 years ago caused these cysts to grow but I'll never know. I'm just glad to have them out and be done with the surgery. Take care and thank you for all your help! Love, Rosie

Such Good News

Congratulations Rosie!