Vertical incision and removing everything

[Apricot100]

I met w/oncologist today for "20 cm mass" on ovary as well as a smaller one on the other ovary.  He thinks cancer and wants to do a vertical incision because they are so large, and do a total hysterectomy due also to thick endometrium.  I am a mess and sick with fear.  Anyone had similar experience?  This was the 2nd opinion and was same as the 1st.  Do I allow only removal of largest mass or get all removed?  I had a myomectomy 1 year ago and can't handle another surgery.  Have considered death rather than face another surgery.  Please please help.

[Apricot100]

Pam - how big was your cyst?  My surgery is not scheduled yet - I'm still trying to figure out what to do and am a total mess over it.  That's why I'm here - hoping you guys will help since you've been there.  I don't sleep.  Last night only from about 10:30 - 2:30.  And then I'm wiped out all day.  

Suzsen - I'm 45.  You are really glad about removing your uterus?  Why was it removed?  No complaints at all?  Thanks for the article, I'll check it out.

[suzsen]

Well, if you really hate the thought of surgery so much (and lets face it, who LIKES surgery?) why not go ahead and have it all taken out now?  That way you won't have to face more surgery later if you leave an ovary and heaven forbid end up with another cyst.

How old are you?  I am 43 and removed my uterus 4 years ago (best thing I ever did, thank you very much!).  I have an unknown 4 x 5 cyst that's coming out on May 18th and I have to decide about the ovaries.  Since my mom has ovarian cancer I'm tempted to remove both ovaries.  They don't think I have the BRCA cancer gene, but I just don't want to risk it.  I hate to plunge myself into menopause at such an early age, but the fear of ovarian cancer is overwhelming.

Great article, by the way, to consider about removing ovaries:

http://www.msnbc.msn.com/id/12463841/

[Apricot100]

Thank you all for the info.  To dian - yes, myomectomy was clean but it was such a bad experience (catheter, mean nurses, bad bad constipation, long time to heal, etc.) & this sounds much worse.  

To pamnyc - above your belly button??? because so big?? how far above? Did you have total hysterectomy?  I too live alone and for mymomectomy I stayed in a hotel for about 10 days after being released from hospital and was hoping to do same w/this surgery.  What did you do?  

To Annette - How big was yours?  They use STAPLES????  How big?  Can you see them?? Where are they??  They did not use staples on me for myomectomy - it was just a clean c-section horizontal incision.  That sounds like a piece of cake now compared to this.  Staples?  I can't believe they use staples.  So you have staple marks?  Now I'm really sick over this.  Is 2 months good for recuperation? That's what I took for myo. but I feel I haven't recovered completely from that and now this.  

I had another MRI today to hopefully help me decide if total hysterectomy or not.  I'm hoping maybe only 1 ovary will have to be removed, but they want to remove everything. Such a hard decision.  The gyn/onc thought I was crazy for even suggesting that I keep some parts.  I like my parts and don't want to part w/them, only the bad stuff that doesn't belong but it sounds impossible w/the large masses.  Additional thoughts/advice from anyone - please.

[dian07]

Your myomectomy....did it come back clean? If it did...what are you so fearful of? Please talk to me.
Peace.
dian

[LitDoc]

Yes, mine was huge but benign. Actually, according to my physician, the really, really big ones are rarely malignant. However, there's always a chance, and that's why it's better to err on the side of caution with a larger incision. Should it turn out to be cancer, the surgeon will have to debulk and do a lymphectomy -- both require larger incisions. Even if it's benign, a large tumor can rupture (not good!) and spill its contents into the abdominal cavity if the surgeon doesn't have an incision large enough to allow him to manoeuvre comfortably.

My incision goes from my belly button to the top of my hairline. The surgeon cuts through skin, fat, and fascia (the abdominal lining), but can usually just separate the two sheets of muscle that lie over the intestines. In other words, ususally there are no cut muscles with this procedure. It's still painful though, and you'll need meds for the first 3-4 days.

I was able to walk out of the hospital too, but I was very weak. Today, two weeks post-op, I'm still pretty feeble, although getting stronger by the day. My problem is that I had to go back to work prematurely (end of semester -- finals have to be given and grades must go to the Reigstrar!). If you can take more time to recuperate, please do so. You'll need it. I was warned by the Cysters on this site, but didn't have a choice.

I had a catheter, and had no problem at all. It stayed in for one day post-op, and was then removed. Never had any pain. It allowed me to stay flat on my back right after surgery, not have to struggle with bedpan or bathroom, so I saw it as a blessing.

If there are any other questions about my own case I can answer, please let me know.  Otherwise, be of good cheer -- things will be good.
*Hugs*
Annette

[scaredmomof3]

Hi, try your best not to be scared. I had a complete hysterectomy done on April 22, by a gyn/onc fro two cysts one on each ovary. One was 10 cm one was 8 cm.  Also had an elevated ca 125 of 123.Thank God everything was benign.  My dr. also uses the vertical incision, he said he can better see whats going on that way.  Mine goes from just under my navel to my pubic bone.I was completely O.K. with him taking everything out. I am 44 with 3 young children, and did not want to have to do more surgery down the road.  I just had the staples out tuesday.  The first day in the hosp is pretty much a blur. The second day I was up to the bathroom by myself.  On day three I showered and was able to come home.  The oral pain pills worked better for me than the pain med pump.  Each day gets better.  I am to be home for six weeks, and that is difficult, I like to just go when I want.  Try not to let the fear get the best of you.  I found the most comfort reading here, from others that can totally relate to what you are feeling. Good luck to you,    Shari

[Gatsby]

I feel your fear as I have been there myself.  I had two softball sized dermoids and ovaries (all but 10& of right one) removed 12/21/05.  I too had the same symptoms as you, but please remember that 99% of ovarian masses, tumors, cysts are BENIGN.  You are in my thoughts and prayers.  Godspeed
~Tascha

[fungirl]

Yes, mine was benign,and I was able to walk out of the hospital.  My incision started at my belly button, and ended at my bikini line.  I understand your reservations about a catheter, because after my surgery to repair my urter tube and bladder, I had to come home with a catheter for two weeks.  It was also a complete nightmare, but I made it through it and so will you!!.  After my surgery two weeks ago, I had a catheter for the first day, and then they removed it the next day.  I was initally in the hospital for 3 days, but had to go back the night I came home due to a secondary infection (my IV had infiltrated, I do not know if I spelled that right:-).  Your life is worth so much, please do not give up.  Lean on us,but more importantly, lean on God.  He will see you through this and so will we.  Kasie

[Apricot100]

To Kasie & Annette - were yours benign?  Could you walk out of the hospital?  How long were you in hospital? Where does the incision start & end?  Does it cut into your muscles?  Kasie that sounds terrible about the ureter.  I still have urethra pain from myomectomy surgery over a year ago & the thoughts of a catheter (which caused the pain) are enough to make me not want to do anything.  The Doc wants to remove all because he thinks keeping my uterus is "a liability" his words.  He would leave it if I said to leave it in, but do a D&C. But they won't know for a week? the results and if comes back bad, then another surgery.  This is all a nightmare, living wide awake nightmare. Thanks for responding everyone.

[hershe]

Yes and our number one proity is NEVER GIVE UP FAITH YOU ARE WORTH THE FIGHTI have a 25cm mass on my overy and had a five cm mass on the other I thought I was dieing ITS NOT OVER UNTIL GOD SAYS ITS OVER my cister.
YOU WILL WIN THIS FIGHT so when the next young lady come along and say what you are saying youll be able to tell her of your expearences  RRRRIIIIIIGGGGGHHHHHTTTT?

[LitDoc]

Hi friend,
I have the same questions as Hershe -- how old are you? What's the other data you've been given?

I also had a huge tumor, and my incision was also vertical. It's difficult to get a large mass out of a small incision, so most good doctors will opt for a lerger incision, espcially for exploratory surgery. I imagine that removing everything would be the option if ovca is found. You need to discuss with your doctor what he/she will do in case everything is benign.

Please be of good spirits -- I know what it feels like to be overtaken by panic, but remember the mantra of all the ladies on this site: 99% of all ovarian masses are benign.

I know other, more experienced members of this site will also talk to you, and give you good information. Remember you are not alone.

Best,
Annette

[Apricot100]

In response to the previous response, I'm 45.  I've been feeling nauseous, back ache, thighs ache, bleeding between periods, my abdomen is greatly enlarged and painful, and my ribs hurt since it is hitting my ribs now, I can barely walk.  I was fine in Dec.  This is very fast growing.  u/s & MRI show mixed cystic & solid to solid, they can't see any ovaries, only a little free fluid, etc. How can it be that there's so much ovarian cancer if so many are benign?  If benign, why is it growing like crazy?

[fungirl]

I can understand why you do not wish to have another surgery, because last May I had my left ovary removed, and the doctor pulled out my urter tube.  He did not catch this, so I went home that same day.  Three days later I was back at the hospital for high fever.  It took them 2 more days to realize that I had paratanitis.  I then had to undergo another major surgery to fix my urter tube and bladder (my incision was vertical, and did take a little longer to heal).  It was the worst experience of my life, so when I found out in March that I had a 9cm cyst on my right ovary and the doctor wanted to do surgery, I was a nervous wreck.  I am now 2 weeks post-op, and have to say that things are going great.  Please do not say that you have thought of death over having anothe surgery.  I know how scary this is for you, but please know that we are here for you.  I will be praying for you.  Kasie

[hershe]

I can understand your fear but if you dont mind me asking how old are you and why do they fel its oc I thought 99percnt of overian cysts are benign or do you have other problems?you are truly in my prayers and you know what ever is gonna save your life and keep you frpm sergery number three DO IT!I mean your life is worth the keep.