Should I have surgery

[tina7665]

Hi all, as I sit and read this blog, I am also terrified in putting in my first post. I am 47.5 y.o. I don't have any children. I was diagnosed with endometriosis back in 2000 when they did a laparoscopy and removed a cyst. The surgeon complained about adhesion. Fast forward to 2006 I had severe pain from endo. Complex Cyst in right ovary was 3x5 cm. No surgery during this hospitalization.

Today that complex cyst is now 5x7cm and CA 125 is 135 and several fibroids are present in the uterus. My gyn referred me to oncologist. I am scared. I will go see him of course. But is there any way it could not be cancer? And should I automatically agree to surgery given the multiple issues?

Thank you all for any hint or suggestions

[Jolee1074]

Thanks Tina.  I am just willing to try anything.  This forum has been wonderful and very educational.  I keep searching and keep finding more and more information.  Education empowers you to  make the right decisions for you as far as I'm concerned, and this has been the best place to help me in that decision process etc.  Thanks for your words of comfort.  I'm just taking each day (and symptom) as it comes.  

[tina7665]

Hi Jolee I took the home remedies for fibroids only. They helped a lot. But not for the pelvic mass (cyst) at all. The remedies were org vingar with mother and blackstrap molasses. I lost weight and the bleeding was reduced.

I would take rest as the doctor suggested for your ovarian cyst. Some women have symptoms with cysts and others don't at all. These beasts are so tricky. The women here will keep you sane.

I am also experiencing many symptoms. Just hang in there.

Tina

[Jolee1074]

Hi, I'm having a bout with a complex cyst for the last 8 weeks now, currently up after 1am because I'm too uncomfortable to sleep.  My cyst is small (last time checked about 4 weeks ago now at 2cm) but its causing symptoms every single day that I would rather not have.  

Anyway, I'm curious as to what the home remedies you had tried, I haven't found anything in my research that suggested anything other than what my Dr. said, which was rest, and not overdoing ANYTHING for risk of rupture.  We were hoping it would go away on its own..I'm thinking thats not happening.  

We've already started discussing surgery to remove it..I find out more next week after next ultrasound.  I'm scared of surgery, and the what else or possible ifs, but I do want this thing out of me..its been a total disruption of my life both physically and mentally. I can't imagine what you are going through with the added pressure of your CA125 test.  Good luck with your surgery and keep us posted.  

Please let me know what remedies you have tried.  Thank you!

[tina7665]

After trying e exercise and home remedies and weightloss , I went back to gyn/onco last week. Cyst increased to 11cm (grapefruit) and ca 125 is higher as well. Surgery is June 7th. I am healthier now- periods less heavy - no longer anemic.

The doc is concerned since I am 47 and it could be cancer. Anyway I am braver to face it now. I think they will open my abdomen to take it out. I asked them to remove my uterus...keep u posted. Please pray for me. Tina

[tina7665]

After trying e exercise and home remedies and weightloss , I went back to gyn/onco last week. Cyst increased to 11cm (grapefruit) and ca 125 is higher as well. Surgery is June 7th. I am healthier now- periods less heavy - no longer anemic.

The doc is concerned since I am 47 and it could be cancer. Anyway I am braver to face it now. I think they will open my abdomen to take it out. I asked them to remove my uterus...keep u posted. Please pray for me. Tina

[tina7665]

After trying e exercise and home remedies and weightloss , I went back to gyn/onco last week. Cyst increased to 11cm (grapefruit) and ca 125 is higher as well. Surgery is June 7th. I am healthier now- periods less heavy - thinner - no longer anemic.

The doc is concerned since I am 47 and it could be cancer. Anyway I am braver to face it now. I think they will open my abdomen to take it out. I asked them to remove my uterus...keep u posted. Please pray for me. Tina

[ontariocanada]

I went in to surgery laprascopically but had to sign consent for a laparotomy depending on what they found when they went in there.  They were able to remove it laprascopically, and I can say that I woke up from surgery feeling better than I felt when I went in.  It is sooo worth it to just get it taken out.  I went in knowing that they would take everything that they felt was necessary and I was okay with that because all I wanted was to come out healthy.  Hopefully they will book you in for surgery quickly and erase the worries from your mind and let you get on with the healing process.  I will again remind you that your endo probably is causing the complex cyst and therefore is most likely benign.  Do what you need to do to feel better and good luck.
Christy

[tina7665]

Christy

First of all **congrats** on making it through well enough to post on Friday! Thanks so much for sharing your journey. It gave me hope. Glad you got it out of you. Do you mind if I ask whether you had open abd surgery or laparascopy?

My gyn called to say her endometrial biopsy on me was unsuccessful. Something (most likely the fibroid which involves partial lining of uterus) was blocking the path. She did not collect any endo tissue from that biopsy. Anyway I am waiting to hear back from the gyn-onco so that I can ask him questions like partial or full hysterectomy. I will make a question list.

I cried today as I am very scared. Intuitively I know I need to relax my bodyand mind. Thx for that reminder during this wait and watch period!  I will be taking deep breaths from tonight. Thanks  you and good wishes for speedy recovery to you and Yvonne.

Tina

[ontariocanada]

I just had surgery on Tuesday for what was called a complex cyst on my left ovary that was 5.5cm and had been there for over a year.  I also had an elevated CA125 test result but once they got in to do the surgery they discovered that I had endo and that was the cause of the cyst, and most likely the cause of the elevated ca125.  You definitely should get it looked at, and have it removed however with a history of endo I would suggest you take a deep breathe and dont borrow worries.  I know it is hard not to worry but it will be easier on your body if you can find a way to relax.
Best wishes.
Christy

[tina7665]

I meant to say Yvonne

[tina7665]

Thank you so much Connie. You will not know how much I appreciate this community which I found yesterday only. Congrats on getting that gd. Cyst out. They may remove my uterus too since multiple fibroids r present with thickening of lining.

I know what u mean by ridiculous...all the worrying and waiting. I will keep u all updated. And wish u a speedy recovery and baby delivery.

Tina

[Sconnie]

Hi Tina,

I know this is all really scary and worrying, and we are all here to help and advise, we are not doctors but we are here for comfort as we have been through the same thing.  Its easier for me or anyone to say pls try not to worry after our events have passed, but I really mean that, as I worried so much when I was first found to have a 10cm suspicious complex cyst! long story but I ended still carry it around for 5 months before it was took out propertly, first it was drained (which was wrong to do so) then 6 weeks later is was looking very suspicious, so I was booked in for open surgery only to then find out  I was pregnant and it had to be cancelled and I waited until my second trimester.   So for months, I carried it around and the worry sent me insane, as I had so much time to think about the what ifs, analysing my scan reports, reading the internet, it was ridiculous, the sonograhers were concerned, my Gyno wasnt, and I shoud have listed to him more.  He finally removed it last week and it was a benign dermoid!

So all that worry was for nothing. Still it was an experience and I have learnt to respect all the simple things in life now.

I am no doctor, but just from my experiences, and discusions with my Gyno, I would suspect your cyst is an endometrioma from the endometriosis.  Endometriosis can raise a CA125, my Gyno told me this and I have read it so many times, I suspect your Gyno is just being cautious referring you to an oncologist, but if you have had pain from Endo and an operation before for adhesions, its highly likely the cyst is an endometrioma formed from the old blood.  

I wish you the best and let us know how you get on.  

Yvonne
x

[tina7665]

Thanks please stay with me as I travel through this journey alone. Ku thanks for the tip. Julianne let us know your result. I am waiting for call from onco's office for consult. What a crazy ordeal

[ku111]

This is probably very overwhelming to you.  I would wait to see what the Dr. says and all your options.  It is never a bad idea to get a second opinion and all good dr's will encourage you to do so.  I wish I could offer better advice but I think you should do whatever you need to do to LIVE with the best outcome for you. I wish you the best.

[Julianne2011]

Hi Tina, I am new to this forum...just joined.  I am 53 years old.  I had an ultrasound on Monday with a phone call on Tuesday to say I have more than one cyst on my right ovary.  I went in for CA125 test this afternoon.  I'm waiting to find out what the number will be...

I had breast cancer almost 11 years ago so I am quite concerned about the cysts.  I don't have any answers for you but thought you'd like to know there are others who feel as you do.
If we support one another, we'll get through this I just know it!!