My ovarian teratoma

[ljcooper]

Hi there im hoping someone out there can help me im a 29 year old girl from london last year i had what was supposed to be a ovarian cyst removed it was 10cm x 8cm straight after surgery i was very ill with adominal bloating i had sickness basically i thought i was going to die i was rushed back in to hospital then my keyhole wounds burst open i had green pus coming out of them i was barely alive it was horrendous. i was in hospital for 3 weeks they didnt know why this had happened i perked up a little bit then was sent home, then i was having trouble breathing & collapased at home again i was rushed in to hospital where i had my lungs drained they was full with fluid also by now i had terrible swelling down below i couldnt sit down i was in terrible pain also i looked like i was 6 months pregnant. Cut a long story short after a whole year of being very poorly it has come back that it was never an ovarian cyst it was a condition called ovarian teratoma & because they punctured the tumour to remove it through keyhole the contents have made me very ill i now have a diseased liver & fluid all over my body. Every doctor i go to has never heard of this happening, if anyone knows of this can they please get in touch im desparate for some advice i feel like my life has been ruined my tummy is covered in open wounds that wont heal because of this nasty fluid that keeps coming from inside me. So far this has cost my father 80k as i had no insurance, i cant believe that im the only one to have gone through this. If you have any experience of this or info please please can you message me on here or email me on ***@**** I have been to the best hospitals in london & the south east but everytime i hit a brickwall all i get told is this is so rare.

[Sunny494]

Hi, so sorry to hear about your sister.

You might want to start your own thread since this one is very old. Starting your own thread will give your question more exposure.

Good luck to you.

[Quita360]

Hello,
My sister had a overian teratoma removed two months ago. She had a seizure while driving, and passed out. This was in August, she has not regained full conciousness since then. She developed encephalitis as a result. The tumor was not cancerous, and she was on heavy antibiotics. She also underwent a plasma exchange. The doctors tell us nothing; they are not familiar with her condition. She is 27 years old, with a twelve year old son that misses his mom. She sent her to a nursing home, she is on a respiratory breathing assistance. She is also in a catatonic state. I am looking for ANY type of help to know what to expect. PLEASE! We have no answers. My email address is ladybugs_mommy***@**** I am looking for answers, but no luck yet.

[ljcooper]

Hi bob thanks for you comments its good to know that people here understand what i am going through. Thanks for the info i have just emailed Roswell park giving them a rough outline of my complex story, will keep you updated with my progress. The thing that is very disturbing is the surgeon who operated on me was recommended through BUPA a massive health care in the UK i thought i was in safe hands but that wasnt the case. I had a meeting with BUPA 3 months ago before we found out it was an ovarian teratoma, the meeting was treated as a joke they really dont believe they have done anything wrong. Even if they was no way of them knowing it was a teratoma until they done a biopsy why did the biopsy now show anything, it was a year later at a NHS hospital when they looked at the slides it showed i had it was a teratoma.

Sorry if i go on a bit ive had so much to day for so long but havent found anybody who understands.

Thanks again!!

[bmcd]

They did a poor job, plain and simple.  This is the deal with my daughter.  She had a watermelon sized tumor on her right ovary, turned out to be stage 3, grade 3 immature teratoma which is cancerous.  She also had a 4 mm mature teratoma on her left ovary which is not cancerous.  Womens and Childrens Hospital surgeons with the assistance of Roswell Park Cancer Institute surgeons (all in all it was a team of 17 highly regarded specialists include pathology right in the operating room) performed the surgery.  They removed her entire right ovary with the tumor in tact sparing her right fallop. tube and removed the mature teratoma on her left ovary, removed her some of her abdominal linings (the cancer had spread from her ovary to these abdominal linings), and removed all of her lymph nodes from her back and pelvis.  The surgery was 7 1/2 hrs. long.  Her incision was 12" long running verticle from her pubic bone to her diaphram.  NO complications.  NO infections.  She was pain free in 2 wks. and the incision completely healed in 4 wks.  This was pretty serious surgery. No problems.  Then treated at Roswell with four rounds of chemotherapy (BEP) with very little side effects.  There were minor errors along the way, but the entire process played out over 4 months with many, many different doctors and specialists.  Bound to be some MINOR errors, but all in all a first rate job done.  This is how it is supposed to be.  There is no joke about a meeting that questions was some incompetent hack and slash idiot did to you and your body.  YOU have to live with the consequences, so I would inquire to these recommended doctors what is really so funny.  Their job is too fix you and make you feel better, not to create some living nightmare that did not exist before you saw them.  There is nothing funny about that.  If they were not qualified then THEY are responsible to recommend you to someone that is. I know they call it "practicing medicine" because it is a practice, BUT some responsibility is warrented on their part and they had better make sure they are qualified to perform the task at hand or DON'T do it, find someone who can.  Furthermore, if something went wrong, as an adult and a trusted doctor (who you literally put your life in their hands) has made an error, there is accountability and living up to your mistakes. Shame on them. I am sorry for your experience.  Bad enough as it is to complicate it worse like this. I know there is a competent facility with responsible doctors who can get you back on your feet and fix the screw up that happened.  If not Roswell, trust me you will find one.

Good luck and god bless,
Bob

[ljcooper]

Sorry typing error meant to say why didnt the biopsy show anything.

[ljcooper]

My god your daughters treatment sounds fantastic compared to what i went through, it really gives me hope when i hear other peoples experiences & to know that they pulled through. Bob everything you have said is what my mum has said, when we was at the meeting mum was so angry she couldnt look at the surgeon she said we wasnt taken seriously & i think that was the problem with my experience even though i was laying there barely able to recognise anyone or what was going on around me whilst throwing up green fluid this man tried to play it down even asking me what was the matter whilst he had a stupid look on his face, it haunts me to this day. Roswell sounds like the type of place that im looking for, im checking my email every hour hoping that someone can help me. The thing that upsets me the most is if he had cut me open in the beginning and not tried to remove such a large tumour through keyhole i wouldnt be going through this, when i read on the internet evey site has said that anything over 5cm should be bagged up before being taken out but this didnt happen with me he just went for the kill, and killing me is what he nearly did.

Im determined to fight this i have everything to live for, i have got this far when by rights i shouldnt be here.

Thanks for you kind words & advice.

[bmcd]

Sorry, the hospital is called Roswell Park Cancer Institute.

Take care,
Bob

[bmcd]

Roswell Cancer Institute is located in Buffalo, New York here in the states.  It is said to be the first true specialized cancer hospital in the states.  Very good research facility and wonderful hospital.  My daughter was treated there for ovarian cancer from December through March of this year.  We got top rate care with very caring informative doctors and nurses.  I would highly recommed this hospital if  you are coming to the states.  Hope this helps and hope you are feeling better real soon.  And also, I glad you are going to get your pound of flesh for the second rate job the original surgeon did. I hope that works out very well for your future.

Take care,
Bob

[ljcooper]

Hi there going to the US is defiantly an option for us would you be so kind to forward Names of hospitals & as much detail as possible who i need to contact if that is not too much trouble any help would be much apprecitated. I have been to my doctors this morning he has been very good through my illness & even he said the problem we are coming across is no surgeon/consultant in the UK seems to be brave enough to take me on. I know the next operation would be very risky but im willing to take that risk, im healthy (apart from this) & young i have a good chance of fighting this. Im getting in touch with a medical lawyer this week i need advice on this as they are taking no responsibility for their mistake, when i look back at the past year & some of the things that the first surgeon who done this has said to me.... I was accused of having the immune system of an 80 year old cancer victim although ive been fit & healthy all my life, the man made a big mistake but he turned it around to be about my health.

Thank you for your encouragement & any hospitals that you think may be able to help me would you email me the details or leave a message on here, my email is ***@****

[Jo A]

Lawyer Time! I agree it sounds very suspicious. It sounds like you were not given proper attention and have gone through all this agony & expense as a result. Doctors need to been called to account for doing harm. It probably isn't what you want to be putting your energy into at this time but if you don't, maybe your father could retain a malpractice attourney to sue on you behalf. If your system is anything like ours the lawer will do it on a persentage basis, so you pay nothing up fron, the lawyer just takes a % from the money you get at trial, ususlly 1/3.

Sure the doctors are going to cover for each other & say it was unavoidable, nothing could have been done to prevent this tragic thig, act like they really care, & did all they could, all that garbage. but people see through that facade and put themselves in your place & hate it when A doctor practically kills a patient. Very simpatheticI think you stand a good chance of getting a nice award that will more than cover the cost of your treatment so you & dad won't both have to suffer. Good luck.

[Jo A]

I forgot to ask if you would consider coming to the US to seek treatment. We have several outstanding hopitals here I"m sure you could find a doctor here that could help you, maybe in Boston,Massechusetts or Cornell , in New York

[RavenLady]

Hello Kay,
     There is no way a cyst/mass/tumor can identified pre-op so if the Doctor is any good, he/she will let you know what they think it may be given the US results and will not tell you what it is conclusivly.  Although bircth control is sometimes prescribed to younger women to prevent the development of new functional cysts.  However, a mass the size of your daughters is not going anywhere.  She is fortunate the cysts has not caused her pain or dysfunction.  Why not start your own thread K, I have other questions regarding your daughter.  MV

[KB5118]

My daughter has just been told she has to have surgury to remove a cyst that is volleyball sized.  They said there isn't any other option.  They haven't determined what kind of cyst it is and if it is attached to anything vital.  She is not in any discomfort, but looks about three month pregnant.  I guess I am just wondering if anyone thinks we should just jump right into surgery for those that have gone through this.  Are the surgeries that are successful worth the scar, recovery time, etc.?  I know we don't want it to rupture, but it sounds like others have been given medication to see if it will strink on it's own.  Does anyone think this is an option?

[ljcooper]

Hi Mary thanks for the email ive just tried to download the software i need to go on the site, think im going to get my partner to help me im not that good with these computers haha.... Ok ive just applied to join im waiting for my confirmation email so should be up & running soon it will be nice to chat to fellow cysters.

Hi kasie when i had my 2 op in may i had my stomach cut open about 6 inches then they put a couple of drains in but they wasnt the drains that are attached to a bag they was almost like little straws that drained off in to my dressing. Your story sounds awful i cant believe that you have all been through similar things its so comforting for me.

Thank you to you both for taking the time to reply, your very kind.

[fungirl]

I am so sorry that you are going through all of this.  It sounds SO familiar to me.  2 years ago, I had a 12 cm dermoid cyst removed.  During the surgery, the doctor ripped out my urter tube from my bladder and did not even know that he did it.  They sent me home the same day.  2 days later, I was so very sick.  I was throwing up dark green and I was in so much pain.  When we got to the hospital, my doctor had LEFT (knowing I was on my way).  To make a very long story short, after putting in a drainage tube, they found that my abdomen was full of urin.  I had paratanitis.  They had to go back in and repair my urter tube and reattach it to my bladder.  The doctor told me if I had waited 2 more days to go to the ER I would have died.  Have they put in  a drainage tube to drain  all of the fluid out of your body??  Have they made sure ther has been no damage to your urter tubes?  I would ask you new doctor on Friday about the drainage tube.  I think it would help trememdously.  By the way, please join us over on the Battallion site.  It is wonderful and you get such great advice.  Please keep us posted on how you are doing.  Kasie

[RavenLady]

Hey Louise,
     Did you get my email invite to the Battalion site?  This site is great and we will all help you prepare for your consult on Friday.  The Cysters here and on the Battalion private site have been through some of the travesty you have endured and can help you form you question list for the next Doctor.  The url for the private site is http://groups.msn.com/BulgeBattlingBattalionCysters/general.msnw
     Just hit the url and you can email an access request to our Awesome Web Mistress Mid.  We would also love to hear from freshair, helmar, bootsy, and so many other of the new Cysters here.  
     In addition to this forum, I'd advise dropping a post on the "Ovarian Answers" forum that allows you to get advise from a Doctor.  I'd be interested in the response of a Doctor who is, hopefully, unbiased in your case.  Louise, you are not alone!  We are here for you!  MV

[ljcooper]

Sorry forgot to answer your other question, peritonatis has been mentioned but nothing has been confirmed.

[ljcooper]

Hello there thank you for your message, yes i did get MRSA in my bladder (it went unnoticed for a long time) on top of everything else i know its a miracle im still here. When i had the breathing problems i honestly felt like i was drowning in my own body when i see the chest x-rays i was horrified my lungs was full to the top no wonder i couldnt breath. Ive spoken to my father today as we will do anything to get me better if i could get the correct treatment we would fly to the other side of the world. So far i have had 2 operations but the last operation i had was in may last year & it has taken this long for me to actually be able to get a tiny bit of my life back i still have open wounds that i have to dress everyday, i make the most of a very bad situation. As a family we are so angry we truly believe that the consultant gynaecologist who done my first operation truly made a blunder although of course they deny anything that went wrong was their fault (they even said to me thats if anything did go wrong, of course it did they nearly killed me). Every hospital i go to they are so baffled by my condition i have been told that it is so rare but i just cant believe that im alone on this. The internet is my last option as im due to see another consultant on friday but im reluctant to be pulled around anymore as it just seems that im a human guinea pig because no- one knows how to treat me. If i could find a consultant/surgeon who has come across my condition i would be willing to fly across the world to get the correct treatment. This site is such a relief i feel so alone in the UK as nobody seems to have had these problems or anything similar.

[RavenLady]

Dear God Louise!  If you were here in the states I'd tell you to get a lawyer!  First of all, teratomas, or dermoids, are fairly common in younger women and although many as large as yours have been removed via laproscopy with causing the damage that began your nightmare, yours was not.  So did the spillage cause peritonitus?  The other thing I wonder is if you contracted MRSA, a staff infection contracted in hospitals.  Your liver is reacting to the poison your own body has produced.  The fluid in your lungs was pneumonia and it is amazing you survived that alone but to be left with this "rare" condition makes me very suspicious since it sounds to me that you post op issues were caused by impompetance of the Doctors who performed the surgery and the failure of medical community after that to take responsibility for their initial surgical mistake.  Sounds like they are covering up for each other at your expense.  I don't know how your legal system works but there are many UK Cysters who, I am certain, will be along to offer advice!  MV

[ljcooper]

Can i just add to my question it came back that my tumour was benign which is good news but the contents of my cyst seem to have done so much damage to my insides. will i ever recover from this? i lost a left ovary also in the 1st operation.

Thanks for taking the time to read my post.