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Ovarian Cysts Community
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Avatar universal

Newly diagnosed bi-lateral dermoid cysts

Hi,

I am a 43 year old woman living in Massachusetts.  I have never been pregnant (my husband is sterile due to chemotherapy treatment from when he was in his late teens and twenties).  We have a daughter, 8, that was adopted from China.  I have never had a regular gynecologist and before this past week, my last ultrasound was in 2006 and was normal.

A few years ago, my periods started to get shorter in length (down to 4 days), with very heavy bleeding in the first 2-3 days and dramatically increased clotting.  I attributed this to getting close to pre-menopause, as some of my friends in the 40-50 age range described similar issues.  Around the same time, I began to be able able to tell from sensations in my abdomen that I was ovulating (I did not experience this before my late 30s and early 40s).  I also sometimes experienced unexplained discomfort in my abdomen area...I would tell my husband that I thought my uterus might drop out.

I mentioned this to my primary care physician two years ago, but she wasn't concerned.  This year (July 2015), she did my pelvic exam and said she couldn't feel my uterus, so she sent me for trans-abdominal and trans-vaginal  ultrasounds.  The radiologists told me that I have large (many times the size of the ovary) dermoid cysts on each ovary.  He told me how big they were in centimeters, but that part went right out my head.  He explained what they are (I was pretty shocked, having never heard of these), and pointed out the hair on the ultrasound.  He thought one ovary would definitely need to be removed.  His opinion was that the other should also be removed, but suggested I think about whether I was truly done having children (which seemed funny to me since I have never been pregnant or given birth) and how I feel about early menopause.  I am still in shock, and waiting my copy of the final report.  I have an appointment with a gynecologist on Monday.  The radiologist thought the gynecologist would want to order a CT Scan or MRI.

I am trying to come up with a good list of questions, and wanted to throw it out to those of you that have been there.  Some things that occur to me are:

1.  If both ovaries are taken, will they leave my uterus in?  Should I have a preference one way or the other?
2.  Open or Laproscopic Surgery- I am not sure the extent to which they can tell this before they get in
3.  Can I continue to exercise normally before the surgery?
4.  Although I know these are very unlikely to be malignant, should there be a gyn oncologist on standby just in case?  
5.  Are dermoids and removed ovaries always sent to pathology for cancer testing just in case?

Also, to any of you in Massachusetts (Boston area), do you have someone that did your surgery that you would highly recommend?  My PCP referred me to Paul Gaither, who is affiliated with Newton-Wellesley Hospital.  I have good experiences with the hospital overall, but have never had major surgery.

Thanks for any input you can provide!!
Tammy
8 Responses
Avatar universal
COMMUNITY LEADER
Welcome to the community. I got a sick feeling in my stomach as I read your post, not because I think your diagnosis is so awful but because someone is suggesting you have your ovaries removed. I have been there and have learned SO MUCH since then.

First and foremost, ovary removal (oophorectomy) and hysterectomy, along with c-section, are the top overused surgeries. Unnecessary surgery is bad enough but both of these surgeries cause permanent harm because the uterus and ovaries are essential our whole lives.

Did you know that the ovaries produce hormones our whole lives and these hormones keep us healthy? If you do a web search for medical studies about "bilateral oophorectomy long term health" you will see all the increased health risks caused by ovary removal. It really is nothing like natural menopause!

The uterus and its ligaments are essential for pelvic integrity - "place holders" for the bladder and bowel and vagina. It is not pretty once they shift post-hysterectomy. Consider sexual function too - it will likely be negatively impacted. Figure changes are also inevitable as the ligaments / pelvic support structures have to be severed to remove the uterus.

My organs were removed for a 9.5cm ovarian cyst 9 years ago. I aged horrifically fast (15 years by 4 months post-op). I even developed gray hair in that short amount of time. This was with HRT / estrogen!

I wish I had understood the very lucrative hysterectomy industry and listened to my barely audible inner voice instead of my gyn of 20 years.

According to Dr. William Parker, author of "A Gynecologist's Second Opinion" and http://www.ovaryresearch.com/ovarian_cysts.htm almost all ovarian cysts can be removed without removing the ovary (cystectomy). If only part of the ovary is left, it can regenerate giving us its important hormones for life. Dermoid cysts are benign so the ovaries should not need to be removed if the frozen section (done while in the OR) shows the cysts to be benign.

I wish I had done things very differently when my cyst was discovered, first and foremost to tell my gynecologist "NO" to his treatment recommendation and then to seek out a surgeon who said he/she would remove JUST the cyst and nothing else.

I hope this helps in deciding how to proceed. Don't shortchange yourself. You are worthy of staying whole and healthy if you do not have cancer. Ovarian cancer is rare with a woman's lifetime risk being less than 2%.
Avatar universal
Thank you for your thoughts.  You given me a lot to think about when I meet with gynecologist on Monday.

I have the full TA & TV ultrasound report now, so I have some sense of size.  My right ovary is described as having two masses:  one a dermoid that is 7.2cm * 5.9cm * 7.1 cm.  There is also a complex cyst with septations (which may or may not be part of dermoid) that is 4.5cm * 3.4cm * 3.3cm.  My guess is that this is the ovary that the radiologist thought would have to come out.
The left ovary has what is thought to be a dermoid that it 8,17cm * 5.21cm * 5.63cm.  Again, thanks for your thoughts, and I'll keep you posted!
Avatar universal
COMMUNITY LEADER
My cyst was complex with septations but even MOST of these types of cysts are benign. As mentioned before, the frozen section done while you are in the operating room should dictate whether any organs are removed. My gynecologist actually waited for the results of the frozen section and then proceeded to remove the rest of my sex organs. He should have sewn me back up when it came back benign.

I wish I had altered the surgical consent form to clearly state what could and could not be removed and under what conditions and had the surgeon sign off on the revisions and then made a copy for myself. And last but not least, I wish I had not allowed him to rush me into surgery as I did not have enough time to research and understand the many long-term repercussions.

I am surprised the radiologist commented at all as I thought they were supposed to leave all that up to the treating physician.  
Avatar universal
Hi Redheadedchick,
    I don't know if you've read my recent comments. Probably not, because I didn't know until 2 days ago exactly what I had. I just had a 6cm dermoid cyst removed. It was attached to my left ovary, so the entire ovary had to be removed. All I can say is that every woman is different. Every woman's experience is different, even though we both have the same issues. I had a great GYN, but he was not an oncologist, so he had the foresight to send me to a GYN/oncologist to let her determine the best steps. As soon as he saw the mass on my ultrasound he had everything moving very quickly. I had a CT scan, a colonoscopy, and blood work, all within a week. When the GYN/oncologist examined me she determined that it needed to come out, certainly. I trusted her, and adhered to her decisions. My cyst was fairly large, so she did have to make an incision right at my bikini line to remove it. I am 50 by the way, and post menopausal. I am not a Dr. I haven't done a  lot of research on ovaries and the hormones that they continue to produce, but I did trust the Doctor. She explained to me that it was sort of like drinking wine, first a glass a day is good for you, then it's bad. Same with keeping your ovaries. Do you keep them, or are they really that important after menopause? I'm  sure a lot of women would argue with me that you should keep them no matter what. It's all in the experiences that you've had. She said that the argument  to keep them is swinging more against it. That they really don't produce enough hormones after menopause to warrant keeping them. Unless of course you are still at child producing age, and plan on having a family. I'm guessing that you are not planning on having any more children? Anyway, the ultimate decision is yours. No one can tell you what you should and shouldn't do. My advice is to trust your Doctor. I was lucky, not everyone is. How do you feel about your Doctor? The one advice I would like to give, is get a GYN/oncologist to examine you. Not just a GYN. Even though dermoid cysts are usually not cancerous, there is a 1 percent chance, and even that is too high. Sorry I went off track. The final result for me was the removal of the left ovary, and both fallopian tubes. She did end up leaving the right ovary, because she said even though I am post menopausal, in my case the right ovary was very healthy, and I am still pretty young. So it is probably going to benefit me keeping it. I do have about a 5 percent chance of developing another dermoid cyst, but at least now I am more educated on the subject. I know this post is kind of long, but if it helps in anyway it was worth the writing, and I hope the time it takes to read it. I just pray for you, and hope that your Dr., is someone you can trust. By the way I live in VA, and my surgery was done at UVA. The best of luck, please let me know what happens...
Avatar universal
Please do yourself a favor and read about the fact that your ovaries are endocrine glands as well as egg-producing exocrine glands that continue their important endocrine function your entire life. Heart disease increases up to 7x if you take out that part of the system, and you increase the risk of many other illnesses. Cysts can be removed from around the ovary quite easily. You can find lots of videos of this surgery online which, though a bit graphic, show how it's usually quite possible.
Avatar universal
Sanny50,  I understand what you're relating about what the doctor said about the glass of wine, but I would say that that comparison isn't apples to apples in this case. If you do a simple google image search for the endocrine system, you will see that the gonads (ovaries/testes) are one of just a few crucial parts. Ovaries' outside shrivels up when making eggs is done, but the inside area makes hormones we need our entire lives for heart, muscle, etc. While taking hormone replacement therapy is more like the glass of wine comparison because thinking and data on this topic changes year to year and doctor to doctor, there are no circumstances under which removing a part of the endocrine system is not unhealthy. It is the same as removing your thyroid, pancreas, or adrenal glands. Not something you should do for a cyst. So, while we're all different in, say, our reaction to medication or our likelihood to have a certain disease, we're not all different in terms of our major organs. Taking out a heart, cutting of a windpipe...some things have the same effect in all of us. Removing gonads falls into this category.

One thing I would note that many don't know is that OBGYNs are the only medical specialty besides orthopedics who perform surgery but don't train in general surgery, and that includes gynecological oncologists. They are trained during their OBGYN residency to remove whole organs, not just the illness, so that's what they do. That doesn't mean it's necessarily the right choice, or the one that a skilled surgeon would make. If you had a spot on your kidney, would they take the area that appeared problematic or the whole kidney? Under which circumstances would you have the better outcome?

Lastly, Redheaded Chick, Dr Keith Isaacson at Newton-Wellesley was the physician who said that, even if 1 in 10 women had cancerous fibroids, not 1 in 352, he would still offer them the choice of using a morcellator to chop up the fibroid inside their bodies during surgery. While fibroids are not your issue, his comment at the May 2015 ACOG annual meeting does give me pause about the surgical attitude of OBGYNs at that hospital. Luckily, you have Mass General, the Brigham, and many other good choices nearby.

Wishing you well.
Avatar universal
Hi All...
Thanks so much for all your feedback.  I just saw your comments - I thought I would get an email if there were new comments, but not so.

Since I posted initially, I have had an initial visit with the gynecologist.
He sent me for the CA-125 test and an MRI.  Initially, he did not seem to think he would be able to remove the bi-lateral dermoids laproscopically.  He also thought that the surgery should be done in team with a gynecologic oncologist from the Brigham.  I felt good about that as a precautionary measure.  I also liked the guy very much overall.

My CA-125 came back within normal range.  The MRI showed that the dermoids were smaller than initially thought.  

Instead of one large dermoid on the right, I have 5.7cm * 4.2cm * 5.1 cm dermoid and a second, smaller cyst that measures 1.9cm * 3.0cm * 3.8cm.  The second smaller mass is likely either a hemmorhagic cyst or endometrioma.   The doctor thinks it could also have been the spot where I ovulated that month.

The cyst on the left ovary is 6.5cm * 5.2 cm * 5.9cm.

There is also a small uterine fibroid.

When I initially met with the gynecologist (before he had the CA-125 and MRI results) he was doubtful about laproscopic surgery and seemed like he definitely wanted the gynecologic oncologist on the surgery.

When I talked with him yesterday, he seemed much more laid back about everything.  Said he thought he could do the surgery laproscopically and that we didn't need a gynecologic oncologist.  He was also optimistic about saving one or both ovaries, or at least partially.  But I was a little concerned because he said dermoids are often messy and usually rupture during surgery.  It also seemed like he planned to cut the dermoid to be able to get it out laproscopically?  But maybe I misunderstood?

He said that I did not wneed to worry about the uterine fibroid, but that he did want to do a D&C while I was under because that may help with my very heavy periods.  If that doesn't help, then I can consider oral contraceptives, a Mirena IUD or endometrial ablation.

Today I talked to the surgery booking person and asked her whether frozen samples would still be send to pathology and what the back up plan was if they found cancer.  I know cancer is highly unlikely, but I do want samples looked at.  This issue was lingering in my mind after I got off the phone with the gynecologist yesterday.  She said he would call me on Friday.

Then she called me back, told me she has spoken with the gynecologist, and said the gynecologist had decided to do the surgery in conjunction with gynecologic oncologist from the Brigham, which is back to the original plan.  I don't know if he has changed his mind about doing it laproscopically.  I really hope he does call later in the week, because I am feeling a bit confused.  The surgery is now scheduled for 11/17...I should get paperwork in a few days and hopefully that will clarify things for me.

Also, this is a weird question, but do I need to be concerned about whether I get my period at this time?  My periods can be irregular, and the surgery is scheduled for 2 days before I am due to get it.

Again, thank you again for all your thoughts.

Avatar universal
COMMUNITY LEADER
It is odd that your gynecologist keeps changing his plan. But being that your surgery is not until November 17, you have plenty of time to ask questions and seek out another surgeon if you are not comfortable with the treatment plan.

Keep us posted with questions and updates.
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