Advice - Dermoid

[Sconnie]

Hi Ladies,

I am not sure what to do, here is my story....

I am nearly 35 at the end of January.  I have been trying to conceive my first child for nearly 5 years.  Last October 2010, we went for tests, which resulted in me having an ultrasound that picked up a 10cm ovarian mass suggestive of an endometrioma or hemorraghic cyst.

I went in for Laporscopy key hole surgery in November, where my Gyno/Surgeon said he could drain the endometrioma and give me meds to shrink it, because I didnt want major surgery to clear all the adhesions.
(I was scared at the time as it was my first surgery)

When I woke from the surgery, he told me I didnt have endometriosis, and instead I had a growth inside my ovary, that he drained (extracted yellow fluid) that he thinks is a dermoid and to come back in 6 weeks for a follow up ultrasound, so he didnt actually take the cyst, he just drained it, which I not happy he did knowing if it wasnt endometriosis it could have been anything, and I would have rather him left it and discussed it with me or took it completely.  I went back 6 weeks later and the ultrasound showed it as a 7cm solid mass, which my Gyno said it will because it drained the fluid.  I was scheduled for laportomy last week - January 11, and found out just before I was pregnant! so the surgery was cancelled.  I was shocked, so shocked after all the years of trying.  I can only assume the key hole disturbed something because he also put dye through my tubes.  I just couldnt beleive it.  I would normally be so happy but I still have this solid mass.   They have said they can operate in week 16 of my pregnancy (I am currenly 7 weeks).  However I am worried because its solid, I have since had a transvaginal ultrasound and they 'think' its a dermoid.  I am worried that 2% of dermoids can turn cancerous, or it may not even be a dermoid at all, it could be another cancerous growth inside my ovary.

I just dont know what to do waiting until week 16 for surgery is a long time, I am worried its been drained and cells could leak.

They did of course test the cells from the fluid extracted which were benign, but that doesnt mean to say the solid part isnt.  I dont want to risk losing my baby by having surgery now if I ask for it, but waiting until week 16 is a long wait and then finding out it couldnt be malignant, id rather have it out now.

As anyone every experienced a solid or complex cyst during pregnancy and it was managed ok? I just feel so scared and dont know what to do for the best.

Kind Regards
Yvonne

[Sconnie]

Hi, thanks for your reply, helps putting it the way you have. Im really sorry about your miscarriage, must be very hard.
They did show me the pics of my lap at the time, my ovary looked like an enlarged white balloon, they also took pics of the other ovary which had just ovulated. Everything look ok. He also shown me the pic after he drained it, and it looked like a deflated balloon, I think that's what bothers me because it filled up quite quickly in 7 weeks.

I saw my gyno's registrar this morning, she said they won't operate if they  think the risk of cancer is low and especially as i had orginally had gone to them with fertility issues, now I'm pregnant they have to weigh up the odds. However she is going to see if they will agree to an mri scan which will tell if its a dermoid or not, however my gyno who has to sign it off as it costs a lot, he wasn't there today so I'm waiting  for a call. Thanks again for your advice. X  

[willyte]

The worrying is agonizing, isn't it?  It doesn't help that you have all these pregnancy hormones raging right now.  I'm glad you have an appointment tomorrow.  It sounds like you have some important options to weigh with the physician.  The main thing that comes to my mind is weighing the odds of a dermiod causing you problems vs the surgery effecting the pregnancy.
Lets flip the odds - you have a 98% chance this is a benign dermoid.  Great odds! Betting odds! Realize too that they would have removed your ovary if they thought this tumor was life threatening. Also, it sounds like they would be more insistent about the surgery if they thought this was something other than a dermoid.  I think you have a lot of positives on your side right now you can give thought too, not just the scary 2% number.
To answer your question, I could see the blood flow on the ultrasound.  They showed me.  I just recently had a miscarriage and I made them look for blood flow then too.  My OB also showed me pictures of my laproscopy surgery when they removed the dermoid.  It was interesting. They really are nasty tumors.  I wonder if they have pictures of your last laproscopy?  Maybe that would help you by being able to see what they are talking about.
I understand your desire to want it out of your body.  I had the same thoughts. I am a huge worry wart and I could not wait for the surgery.  Hopefully your meeting tomorrow will provide you with some more information and some peace of mind on your decision.  Please let me know how it goes.  
Sending worry free thoughts your way:)

[Sconnie]

They havent said if there is blood flow or not on mine, I am not sure if you have to have a colour doppler for that and I dont think they did that on the Transvaginal ultrasound, can you tell if there is blood flow on ultrasound?.

Its all very stressful.  They gave me the option to decide on surgery at 16 weeks or have it out a c-section during birth, I think they gave me the option because they have known I have been worried about this growth since November and just before surgery to take it out I was found to be pregnant.  It was me that chose the 16 week surgery.  They said that their only concern was twisting of the ovary, but it was up to me to decide if I wanted surgery at week 16 or at c-section.  I am so concerned its a malignant dermoid (worst thing I have done is read cases on the internet about malignant transformation on a dermiod cyst) or some other germ cell tumour that forms inside the ovary.  

I am confused because they first thought it was an endometrioma (from the very first scan I had) that was wrong as when he went in key hole it wasnt.  The growth is inside my ovary, he just decided to drain it.  Now its showing completely solid at 7cm, the last transvaginal ultrasound done she just said it looks very dermoidy.  But its not enough for me, I need to know that I dont have cancer, and they cant tell me that 100%, they have to weigh up the risk of thinking is a benign dermoid, vs losing my baby if they operate now (which I was considering asking them to do now), I have just been to seen my general doctor now and she said you cannot make them do surgery if they dont think the risk is big enough, a person can refuse surgery but you cannot make them give you surgery.  

I really want this baby but I feel so worried that this growth will be cancer and waiting 9 more weeks to have surgery is sending me mentally ill and depressed.  I dont feel the same person.  I am going to the hospital tomorrow to see the specialists again and go through it all.  Here is the UK you dont get the option of an oncologist looking at your scans or reviewing your case, they only time you get referred to an oncologist is once they have taken out a growth and its been tested in pathology and proved malignant.  Unless I had private care which I dont.  

[willyte]

I don't remember the size.  What I do remember is there was blood flow in the tumor that made them question the type of tumor.  They were more concerned that it was not a dermoid. My understanding is that dermoid tumors a not a big deal uless they grow too big and rupture or twist the ovary.  What is the Dr.'s big concern with the dermoid?  Is it the size?  Why can't they wait until after you deliver?

[Sconnie]

Hi Ladies,

Thank you for your comments and advice.  

Willyte, its very true what you just said about an OB reviewing the ultrasound pictures, I have been thinking this the last 2 days.  MY OB/GYN has 30 years experience in gynoclogy and everyone rates him, he isnt a oncologist in ovarian cancer,  but I know he treats cervical cancer and also had done hundreds of surgeries on cysts.  However the one thing I noticed he didnt do was review my scan pictures! he just read the report.  The last time I went to see him, his clinic was 1.5 hours behind, so I ended up seeing his registrar, who is a women, She will take over from him when he leaves (he is partially retired).  The first thing she said was 'I am going to look at your scan pictures' she did this whilst the nurse whisked me off for another scan, where they determined it was a dermoid.   I found her more thorough, I am not sure if its because she is younger and they are taught to be more cautious, whereas my Gyno of 30 years experience, I think he goes off all his experience and age of patient.  

I have made another appointment with her tomorrow, I want to sit down and go through the scan pictures with her and get her to talk me through why they think its a dermoid, and the risk of cancer.

I am in the UK, and we have an National Health System where you are allcoated the Gyno at your local hospital, there are 5 Gynos, and the one I have been under is the head of all the team, but I dont quite feel comfortable, but he has the best reputation and no-one has said a bad word about him.  I know I am a worrier, and I have read the internet to scare me to my wits end, but I think its because my dermoid is so big.  How big was yours?

Best Wishes Yvonne

[willyte]

Congratulations on your pregnancy!  I too have had a dermoid during pregnancy.  Here is my story.
When I was 35 and pregnant they found a tumor on one of my ovaries.  I want to say they discovered it fairly early in the pregnancy.  In my case, they were not sure exactly what type of tumor.  Because of the blood flow, they were not sure however, they felt strongly that it was a dermoid.  My Dr. and the Dr. who preformed the Ultra sound decided to just watch it during the pregnancy.  Because it stopped growing, they decided to wait until after I delivered to go in and remove it.  So, when my son was 2 months old, I had a laproscopy surgery and they removed the tumor. Luckily, it was a dermoid tumor.  Nasty thing- hair and mucous.  My ovaries were left intact.  I was told I have a %45 chance it could return or develop another on my other ovary.

I was very happy with how my Dr's practice handled this situation.  I think it is important to add that the OB I went to, had a full time OB that specialized in Ultrasound diagnosis and that was all he did in the practice.  He came in at the end of every ultra sound and reviewed the pictures with you.  That really put me at ease.  I have since moved to another State and have discovered that is not how every practice operates.  I now have to wait to meet with a Doctor who was not in the room during the Ultra sound.   I did make sure that the practice had an OB that specialized in Laproscopy surgery and cancers of the reproductive system.  

My best advice is to get a second opinion from another practice.  Shop around and find one that you feel more confident about.  Write down all your questions and concerns. It is hard to think of having surgery while you are pregnant and you need to feel confident in the care and advice you are receiving.  Best of Luck!

[adgal]

Oh wow.  That is an awful lot to deal with.  It's also the sort of thing that is very difficult to give you advice on.  If this were me, I would probably go with the Dr.'s advice.  If the fluid was benign, that's good right?  I haven't experienced this personally, so it's really hard to say.  I would probably go with the Dr.'s advice, and perhaps even get a second opinion to be certain.  Please let us know how you are doing and how things go.  This post may very well help someone in the same situation in the future.  In the meantime, my thoughts are with you.  Please take care and I am so sorry I can't be of much help on this one.