Discussions By Condition: Medical Stories

Dermoid Tumor

Posted In: Medical Stories 14 Replies
  • Posted By: Anonymous
  • January 16, 2007
  • 01:25 AM

At the end of May in 2006 I had to have emergency surgery because I was experiencing a great deal of pain. It turns out I had a 10 cm (in diameter) dermoid tumor and a large cyst on my left ovary. Everything was fine until a few weeks ago (6 months after surgery) I was just diagnosed with ANOTHER dermoid tumor and a large cyst on my right ovary now. There is also a cyst on my left ovary. I'm so scared that they are going to keep coming back. It was only 6 months! I'm going to be 21 in June... I want to have kids. It hurts so much now. Anybody else out there have these come back twice?

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  • Hi there, I don't know alot on the dermoid tumor I know about he epidermoid tumor my friend had brain surgery for his. I know the dermoids are the ones on the ovarys. Try searching the web on theat specific tumor. There is I think its called polycystic diease in woman with recurring cyst but don't now a whole lot about it. ASk the doc about recurrances. I will see if I find anything on it and let you know. Good luck, I now those cysts are painful. Hang in there. Carol
    nccarol28732 44 Replies
    • January 16, 2007
    • 11:47 AM
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  • Are you still there? I know its been a while. I just was diagnosed with a dermoid cyst of 8.5 cm on my left ovary and they are going to remove it. I DON'T want it removed. I have no kids and I want them. I'm so worried something will happen to the other ovary. What happened to you since you posted?
    Anonymous 42,789 Replies
    • December 21, 2007
    • 10:15 PM
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  • Hi I've been reading your comments. I have to tell you that I had my right ovary taken from me in 2003 and I was devastated. I was told I could live on my left ovary which was healthy. However a few years later it started with a dermoid tumour also. I was also diagnosed with vaginal and cervical cancer in 2006. I have had treatment for those but my tumour was left on a wait and see they dont' do any harm basis. I was distraught but could not do anything about it. I am now in the situation that I am in constant pain which my gynae has informed me is impossible, probably IBS. So I insisted on a scan, he wrote to my GP and told her it was unnecessary but that he is letting me go ahead as I was so persistant (I'm a self pay private patient in the UK) In otherwords if she wants to waste her money fine. I found out yesterday that the tumour has doubled in size now 4cm and there is alot of free fluid in my stomach. SO now I have to wait until Friday for the consultant and I'm furious he was leaving me to suffer and god knows what else. SO QUESTION EVERYTHING PUSH ALL THE TIME. I'm looking at the menopause at 32, and no children. I'm devastated, may you have better luck with these awful doctors who play god. x
    Anonymous 42,789 Replies Flag this Response
  • Twenty years ago I had a dermoid tumor removed along with my Right ovary and fallopian tube. I just found out that there is another dermoid tumor growing in my Left ovary now. My Doctor in Canada mentioned harvesting my eggs before surgery to remove the ovary. Now I will have to go on Hormone Replacement Therapy for the rest of my life. I have had a history of Endometriosis so I am concerned about this. But it is time to hope for the best and to be grateful for my otherwise good health. Sorry to hear about your condition. I hope you feel better soon.
    Anonymous 42,789 Replies Flag this Response
  • At the end of May in 2006 I had to have emergency surgery because I was experiencing a great deal of pain. It turns out I had a 10 cm (in diameter) dermoid tumor and a large cyst on my left ovary. Everything was fine until a few weeks ago (6 months after surgery) I was just diagnosed with ANOTHER dermoid tumor and a large cyst on my right ovary now. There is also a cyst on my left ovary. I'm so scared that they are going to keep coming back. It was only 6 months! I'm going to be 21 in June... I want to have kids. It hurts so much now. Anybody else out there have these come back twice?I'm 25; my OBGYN just found my fifth.
    Anonymous 42,789 Replies
    • February 13, 2010
    • 09:37 PM
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  • I'm 25; my OBGYN just found my fifth.You are not alone on this. Some time in 2006 I was having pain on my lower left side. I thought I was severely constipated because I didn't go to the bathroom for a while. I also have PCOS for many years. My right ovary has the PCOS cyst(s). I started vomiting when I ate and had little appetite so I thought I had food poisioning. The pain got intense to the point where I couldn't stand, walk, sit, or lay down. I felt like I was going to die so on New Years eve 2006 I went to the emergency room, waited forever as they celebrated then had numerous test done. The nurse gave me fluids by iv to fill me for the ultrasound, but it was slow so the crazy doctor came by and told her to give me fluids by mouth. I threw up. I couldn't even keep water down. I had an ultasound and the sonographer turned pale (she wasn't white but she managed to turn pale) ran out of the room saying she'll be right back. I could hear her running down the hallway. She came the Radiologist they look at the screen got me a wheel chair and took me back to the area I was in previously. The doctor finally came in and told me that I had a very large cyst, 22cm x 24cm, it was huge and quite painful. They then sent the gyn to me and he said I didn't need to have it removed and gave me strong pain killers that worked for a few hours.We went back home where I continue to not be able to eat or drink anything not even water. On the second of January the pain killer didn't work any more and I told my husband to get me to the hospital fast because I was going to die. He took me to a different hospital far, far away. As soon as I got there the triage nurse took my blood pressure and called a code, they came rushing with a gurney, EKG, etc. My blood pressure was 230/190. They thought it was my heart, but after many test and me telling them repeatedly that's not the problem they found my heart to be ok. Then they did 100 other test, I was poke, prodded, etc. I was examined several times by several different doctors to rule out other possibilities. Finally I was given morphine which only took the edge off and lasted 10 minutes only. I was crying uncontrollably from the pain. Finally they found what I told them about. The pain was so bad that they couldn't touch my abdomen it just got more and more intense. Luckily for me I didn't eat since before December 25th. Suddenly I saw to guys in white running towards my area with a gurney and I said Oh God I'm going for surgery and I'm gouing to die. When they came and asked for me I pointed to the patient beside me, while my husband and brother pointed to me. They rushed me to the OR where they remove the 22cm x 24cm Dermoid Cyst that twisted causing my blood supply to be cut off. Gangrene had also set in. I lost my entire left ovary and fallopian tube. I asked them not to take it but they had to because of the gangrene. I felt great after the surgery and happy that I survived. I asked my surgeon if it would happen to my right ovary, she said no. While recovering at home I got an infection and went to my family doctor for treatment. I asked him what are the chances of me getting it in my right ovary where I have PCOS and he said it wouldn't happen. GUESS WHAT??? Doctors don't know much! I had an unusal pain in my right ovary on April 24th 2010, so bad that I couldn't breathe, my husband had to pull the car over so I could get out. I went to my family doctor April 29th and he sent me for an ultrasound and did a pregnancy test (neg) plus blood work and urine test. His office called me the first week of May and told me he wanted to see immediately and that they would squeeze me in. At this time I assume I was dying. Upon going there I discovered that I had a bad infection (UTI). I had no other symptoms so I didn't know I had a UTI. After finally scheduling an Ultrasound which I had to cancel and reschedule I went for another US on May 20th 2010. The sonographer kept asking me strange questions which led me to believe she saw an embryo. Upon seeing my doctor June 17th, he gave me the devastating news. They found a solid mass on my right ovary. I think it's cancerous. I'm waiting for my MRI which he marked as URGENT before sending it off. So now I sit here worrying, waiting, crying. I have no kids and want them but don't see it happening. I can't even see myself living. All I think about is dying. I don't want another surgery, they may take everything which means NO BABY.How are you coping? You are so young. I'm not. What's the next step for you?
    Anonymous 42,789 Replies Flag this Response
  • I am the mother of a 22 year old daughter who was diagnosed with a Desmoid Tumor in December 2009. Her tumor is located in her abdomen. It is a very rare tumor. 2-4 people are diagnosed with Desmoid tumors out of every million people. She had 2 operations to remove the tumor however it is in a very difficult place removing it would leave her with no small intestines and a portion of her large intestines removed. Resulting in artificial nutrition and colestomy. She was diagnosed in Stonybrook University in New York....That surgeon had only seen 2 patients with a Desmoid Tumor in his career. We went to Memorial Sloan Kettering in NYC. We have been told even after removal these tumors come back 70% of the time. Her current treatment plan is Doxal. Before that she was on an experimental drug named Nexavar. The goal is to shrink the tumor.....It seems possible do not give up hope.....her Doctors if you are interested are Dr. Robert Macki and Dr. Samuel Singer....My prayers are with all who suffer from this.....
    Anonymous 42,789 Replies
    • September 1, 2010
    • 06:51 PM
    • 0
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  • I am the mother of a 22 year old daughter who was diagnosed with a Desmoid Tumor in December 2009. Her tumor is located in her abdomen. It is a very rare tumor. 2-4 people are diagnosed with Desmoid tumors out of every million people. She had 2 operations to remove the tumor however it is in a very difficult place removing it would leave her with no small intestines and a portion of her large intestines removed. Resulting in artificial nutrition and colestomy. She was diagnosed in Stonybrook University in New York....That surgeon had only seen 2 patients with a Desmoid Tumor in his career. We went to Memorial Sloan Kettering in NYC. We have been told even after removal these tumors come back 70% of the time. Her current treatment plan is Doxal. Before that she was on an experimental drug named Nexavar. The goal is to shrink the tumor.....It seems possible do not give up hope.....her Doctors if you are interested are Dr. Robert Macki and Dr. Samuel Singer....My prayers are with all who suffer from this.....Sloan Kettering is indeed the place to be for Desmoids. Dr Maki, renowned for his Desmoid experience, has left Sloan and moved to Mount Sinai FYI. The rarity of this condition, along with the high recurrence rates, can make this journey seem so daunting. (My desmoid is 11cm, lodged in my chest and was at risk of invading my lungs until I tried Nexavar which immediately stunted its growth. Perhaps Doxal will be my next therapy... good luck to all.
    Anonymous 42,789 Replies
    • January 27, 2011
    • 02:22 AM
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  • I'm 30 years old with two kids. On March 8th, 2011, I went to have a annual pap smear. two weeks later, I was in the ER with tremendous pain on my lower right side. I swore it was my appendix. A CT scan revealed that I had a dermoid tumor measuring about 10cm. I was sent home with hydrocodone and told to contact a gynecologist the next day because I would need surgery. I ended up having surgery the next day in the evening and the surgeion removed not only the tumor but my right ovary and fallopian tube. I am still mentally dealing with this and just feel...angry. Reading other responses about the tumor returning has only fueled my fear but it has made me aware. I guess I will be demanding regular ultrasounds, maybe every six months. I don't want to lose anything else God gave me. I wish I knew why it developed in the first place? II was told that most people are born with these tumors, its just uncertain when and how big they will grow and present themselves. This experience had really rocked my world. I do take some comfort in knowing I not alone, that my feelings of loss, fear, and even anger are shared.
    Anonymous 42,789 Replies Flag this Response
  • I was diagnosed with Dermoid Tumors in 2005 (I was 26 at the time). I hadn't been paying attention to my annual OBGYN appointments as I should have been or else they probably would have found the tumors sooner. Okay, not probably...any doctor worth a salt would have felt those bad boys...In any case, I had been having abdominal and lower back pains off and on for over a year. One day at work I just had this excruciating pain in my back and fell out in the floor - the boss got me up and wanted to call an ambulance, but I declined and just went to see my regular doctor. My primary thought it might be kidney stones, so he sent me to have an x-ray and a cat scan, but also didn't want to rule out a pulled back, so he sent me to a therapist as well. Sure enough, they saw calcium deposits on my x-ray and said I had kidney stones. They sent me to a gastroenterologist to talk about treatment. By then my cat scan had come back...and the gastroenterologist looked at me and said, no don't be alarmed, but we think these are actually tumors on your ovaries, not kidney stones. I was floored. My OBGYN of course did a pelvic, and when he felt the masses, he sent me to a fertility specialist (the best in Richmond, VA). It was also because my OBGYN didn't specialize in laproscopic surgery.Dr. Gianfortoni removed my dermoid tumors - he was able to save both ovaries (only had to remove a small piece of one). I had three dermoids - one was the size of my uterus, one was the size of a softball, and the other was the size of a ping-pong ball. The largest one had caused the pain I felt in my back. The doctors said these tumors can "twist" - not exactly sure what this means, but that is what causes the pain.I also have polycystic ovarian syndrome, which I was diagnosed with after the tumors were removed. But I am happy to say that so far, no dermoids have come back. In fact my ovaries seem to be functioning normally (with a little help from birth control and Clomid), but for the past 6 months I have been ovulating normally and am hoping in the next couple months that I might be lucky enough to be pregnant. I would definitely say if you are younger and want children and find out you have these tumors - find a specialist who cares an extreme amount about saving your ovaries. If I had had any other doctor, I honestly don't know if I would still have my ovaries today - he spent 8 hrs on that surgery to make sure to save them.
    Anonymous 42,789 Replies Flag this Response
  • Hi girls.It is really nice to know I am not alone! Ihave been having pain, bloating, and swelling in my abdomen for a long time now. I have been to the Dr many times where I had to get mad at her to give me an enternal. (She didn't see the need) I have been to the emerg with the pain and my blood count was off but they sent me home as a out patient because the pain had decreased. I went back the next day and the blood test was ok so they didn't see the need for a US. About a year later still having the pain and discomfort and at this point swearing off jeans and planing my life around my bladder and takeing many pregnancy tests. I got a new DR. I told him once how I felt and how long I have felt like this. He said it was NOT normal and scheduled a US that I had two days later. There it was a grapefruit sized dermoid! That was about three weeks ago. Two days ago I found out there are TWO! one much smaller then the other. However it seems the small one is causing the throbbing pain : S I have my first appt with the surgen on the 17th of june. I am so scared of cancer even though my DR says they can usually tell from the US if it is cancer and mine look good! Me and my husband named it FRED and we are trying to bring humor to the situation! The Dr says that he cant see no reason for me to loose my ovary as the tumor is on it not in it! Has anyone had a dermoid removed and still keep their ovary? If I already have two is there less of a chance of it comming back? Should we try to have children right away? Our plan was to wait two years but now we are scared we will loose our chance. Can they affect the baby? Thanks!
    Anonymous 42,789 Replies Flag this Response
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  • I wanted to share my story. I am 22 years old and recently had surgery to remove a cyst that grew on my right ovary. Four years ago I noticed that my stomach was getting larger and very firm. People would keep asking was I pregnant and I wasn't. I visited my local nurse and obgyn and they said it was just fat and to diet and exercise. Long story short earlier this year I was starting to have terrible pains in my stomach and I looked like I was 5 months pregnant. I went to the ER and all they did was blood work and didn't find anything. In the summer my nurse told me i might have a tumor but didn't know what kind and I should go to the doctors to check it out. Two months ago I got an ultrasound and the doctor said they found a cyst on my right ovary that was 10inches in-depth and 20cm. He told me I should have surgery immediately to get it removed. Two weeks later I went for surgery to remove my right ovary since the cyst was connected to it and removal of my appendix. After having a successful surgery my doctor showed me a picture of the cyst they removed. It was 9lbs and was going to continue to grow if I didn't remove it then The cyst is called a dermoid tumor, which is noncancerous but can be dangerous if it erupts. I don't know how long it has ben growing in my body but glad it is gone. After reading other stories on here about their experiences with removal of the dermoid tumor, I am praying and hoping it will not grow on my left ovary. Can anyone let me know if their doctors had given them advice on how to not have them come back. I am only 22 and I'm not married yet but eventually I want to and I want to have my own kids also.
    hunterhr 2 Replies
    • December 21, 2011
    • 04:20 PM
    • 0
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  • I wanted to share my story. I am 22 years old and recently had surgery to remove a cyst that grew on my right ovary. Four years ago I noticed that my stomach was getting larger and very firm. People would keep asking was I pregnant and I wasn't. I visited my local nurse and obgyn and they said it was just fat and to diet and exercise. Long story short earlier this year I was starting to have terrible pains in my stomach and I looked like I was 5 months pregnant. I went to the ER and all they did was blood work and didn't find anything. In the summer my nurse told me i might have a tumor but didn't know what kind and I should go to the doctors to check it out. Two months ago I got an ultrasound and the doctor said they found a cyst on my right ovary that was 10inches in-depth. He told me I should have surgery immediately to get it removed. Two weeks later I went for surgery to remove my right ovary since the cyst was connected to it and removal of my appendix. After having a successful surgery my doctor showed me a picture of the cyst they removed. It was 9lbs and was going to continue to grow if I didn't remove it then The cyst is called a dermoid tumor, which is noncancerous but can be dangerous if it erupts. I don't know how long it has ben growing in my body but glad it is gone. I want to know if anyone had advice from their doctors on how I can keep my left ovary from getting the dermoid also?
    hunterhr 2 Replies
    • December 21, 2011
    • 05:10 PM
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  • In sept 2011 I went into the er because of a mass that I could feel on right lower abdomen. After having a ct scan, a 18 cm dermoid cyst was found on right ovary and 8cm one on my left. I had surgery a couple of days later to have the cysts removed as well as my right ovary and tube. Just a few days ago I went back to the doctor and had a sonogram done to check on my left ovary and another cyst was found, only 4cm, and a mass on my uterus. I am having surgery again to have the dermiod and mass removed. I have been trying to do some research on egg harvesting to try and preserve anything chance of having children. I am only 26 and have no children but want them badly. I'm scared that I wont be able to afford egg harvesting and paying for the storage fees as well as the cost of having IVF. Does anyone have any information on egg harvesting for women that are at risk of losing their ovaries? I have also been trying to find out why dermoids come back. My doctor told me that I shouldn't have another one because I was taking birth control which is suppose to control the growth. Does anyone have any information on way to help prevent dermoids from coming back?
    kellysme 1 Replies Flag this Response
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