Daughter diagnosed with Dermoid Cysts at 21 - history of dermoids in family?

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My situation is that 24 years ago at age 24 it was discovered that I had dermoid cysts on my ovaries. One was 16.5x12cm and the other 9x6cm. I had all my right ovary removed and practically all the left. I was told that I would never have children and was put on HRT immediately. I attended a fertility clinic 6 months after the surgery and was advised to come off the HRT for a a short period to see if I had any ovarian function. I started having periods naturally and was told that there may be a small possibilty I could have kids. Thankfully, I went on to have 2 children and periods for 14 years. However I went into early menopause at age 39. Now my worst nightmare has come true. My 21 year old daughter has just discovered that she now has dermoid cysts. Her ultrasound advises that one is 11x9cm and that she has whats known as a simple cyst measuring 6x4cm on her right ovary which can either be removed or drained. I just cannot believe that this is happening again. She has been advised that she she is now to have an MRI scan and then we have to meet to discuss surgery. Obviously I am so worried that she may end up losing all her ovaries at such a young age. We were told that they can't really tell for sure until they have a look inside but the MRI should give a better indication. They have also said that keyhole surgery is unlikely given the size of one of the cysts. I just wondered if anyone could please advise me what type of surgery they had for cysts of a similar size? Also could anyone advise me if they told you how they were able to preserve your ovary if the size of the cyst was large? I just would like as much information as I can get before we speak to the surgeon. We live in Northern Ireland and I want to be sure that we are doing all we can in terms of best surgery. I am so scared of what the outcome of this will be. I would be so grateful if anyone could get back to me. Any advice  would be appreciated 

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  • Posted

    Hello Donna,

    I am so sorry to read about your situation. I too have had gynaecological difficulties. I have suffered with abdominal pain for years. I have never had a normal smear result and get regular ovarian cysts. Three months ago I was sent for an MRI scan for a slipped disc. They picked up yet another ovarian cyst for which I was then sent for an ultrasound to check it out. I didn't think too much of it as this was always happening. Two hrs after the scan my GP called me to say he suspected the cyst maybe cancerous. I was absolutely destrought. I then had to wait two weeks for an appointment at the cancer and heamotology department. The worst two weeks of my life dragged. The appointment came and I was sent for further tests. The cyst turned out to be benign and I was sent for further gynea tests.

    I am now on analogue injections for three months to block my hormones and bring on an early menopause ( I had the first one yesterday). The hospital are treating me for endometriosis and an enlarged uterus. If the abdominal pain stops in the next few months while I'm on these injections they will take the decision to do a full hysterectomy. I'm 34 and feel ok ish about this. I have my two daughters who are my life. Similarly to you my daughter sadly has been getting ovarian cysts since the age of 16. She's nearly 19 now. The suspect she has polycystic ovaries. She is devestated and panicking she will not be able too have children. When the cysts rupture, often she is hospitalised and in complete agony. All I want to do is take the pain and worry away from her as i feel responsible that like me she is going to have gynea problems. I have had a cyst removed during a laparoscopy. It was absolutely fine and the recovery was quick too. When I was told I had a 6cm cyst I thought it was huge but after speaking to people on here I soon realised that that is not too big at all. I've spoken to people who have had 20-30cm cysts. I was told that simple cysts are very common and can come and go on a monthly basis. They will often leave them alone if they are bit problematic.

    I'm sorry I've not been much help but if you ever want to talk or let off steam, I'm here. It's so tough to see your children suffering. I pray your daughter is ok and wish you the best of luck.

    Best wishes

    Vicky ??

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  • Posted

    Hello,

    It's great to hear how your rest of one ovary worked so beautifully.

    Bodies are great in compensating!

    I had a 9cm dermoid cyst on my right ovary end 20s of age before having children.

    Even this is 16 years ago, even back then CONSERVATIVE surgery was already in place. An ovary not taken 'just' because of a dermoid cyst. The cyst was cut off, the rest of ovary stitched up and after some recovery time, both ovaries were ovulating as they should (and still happily are even I am so over it and can't wait for them to stop. ;-) )

    I don't see any problem for your daughter at this point at all.

    There is no indication to take the whole ovary where the dermoid cyst is and the other one is a simple cyst anyway, it could even be just drained?

    Ask the doc how they plan to do the surgery.

    If you are not happy, ask for a second opinion. Surgeons often approach one and the same problem differently.

    The dermoid cyst does need to come out, but I am pretty sure her ovary at this stage (what is known) does not and will be back to normal work.

    Maybe they were a bit more aggressive decades ago in your case (and it was bigger, too), but I am pretty sure today as conservative as possible is operated, ovary tissue left whenever possible.

    If even a second surgical opinion would remove the whole ovary where dermoid cyst is, ask as to why, if the boarders were not clear and get them to show you the image that indicates it.

    But I am 99% sure it will be a very simple cyst removal with no impact on her ovaries = fertility. It's not too big and only on one side.

    Best of luck!!!

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    • Posted

      i pray you are right. its just given my own experiene, i fear the worst but i shall have to try to be a bit more positive. Her MRI is in 2 weeks so that should give a clearer picture. i just dont understand what determines the removal of an ovary in the case of a dermoid cyst. i read about peopple with cysts at 20cm and no ovary removed and others at 8cm and their's is. i just dont understand what determines the removal. I also dont know who is the best surgeon in our area. i am an anxious person by nature and am scared stiff about the outcome of this.

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    • Posted

      Yes, exactly,

      that's why you need to ask the surgeon how he/she would approach it and as to why.

      Yet again of course, no imaging is as good as being really there at operation site, but a good indication of location and access. 

      (if you search internet for laparoscopic pics of dermoid cysts, it becomes pretty clear how hard the task can become if the cyst is not superficially attached or unexpected bleeding becoming an issue.

      But you never would like to have the ovary removed without the surgeon first trying to save it, that's what I meant, the attitude, the experience in order to try best preservative surgery.)

      You should get referred to a hospital, where cyst removals are a daily routine. You doc (GP,Gyn) should know the right place.

      Ask all the questions if the ovary is likely to be saved. 

      If you were not happy with the answer, ask at a different hospital for a second opinion please.

      (that saved me once of more surgery risk and long ICU for approaching my liver tumor, instead of whole belly laparatomy, it could be done laparoscopically with a tumor exit cut only)

      One statistic if you like: 57 percent of women with ovarian dermoid cysts undergo a cystectomy only, 7 percent a partial oophorectomy (rest is left), 36 percent have a total oophorectomy.

      Now, your daughter seems to have a healthy second ovary, which is a relief already.

      Excuse me being very direct in thinking, but came to mind:

      If you were very worried about fertility and children later in life AND if oophorectomy was very likely, I don't know if ovarian stimualtion (with a cyst) is possible to do in order to donate and freeze own eggs as a backup prior surgery for later IVF, but maybe worth asking, if that was an option you liked to go through to discuss, too? Just as peace of mind....

      When my little tumor in cyst was discovered, it was actually thought to be cancer....so....waking up with a partial oophorectomy was like winning the lottery. 

      All the best with the best preservative operation and quick healing!!

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    • Posted

      Thank-you - My daughter's CA125 is also raised which is another concern but they have told us not to read too much into that as it can be raised just by the fact she has a dermoid cyst. 

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    • Posted

      Yes, CA125 marker is a good tool, but not perfect. It's one piece of investigation and especially follow up.

      It is a good tool for monitoring, measuring it periodically, in series. (having said so, when the method at lab changes or different labs are used for CA125 test, you cannot compare the results 1:1).

      You sure have read up the non-cancerous conditions, as to why CA125 is excreted more into blood, like inflammation elevate the Ca125 value since it is a protein that is secreted by the cells (not only ovaries, also lungs, breast, pancreas...) anyway, but can be stimulated.

      Even a ruptured cysts can cause a rise in value.

      Then again: what is 'normal'?

      No one shoe fits all, there are people with e.g. 40 or 50U/ml simply being their normal range, whereas for someone who is usually around 15U/ml a 40/50U/ml would be minimal raised.

      (The cut off is a calculated value, a 95% range, meaning....5% of normal healthy people are above limit just like that)

      Also 'raised' is not 'raised'.

      I read a study of a 19yr old woman with a CA125 of 657U/ml (now this is high and really elevated) with a complex cyst seen on ultrasound, suggestive of a malignancy, her inflammation markers (CRP, white cell count) were normal, no ectopic pregnancy... in order to explain value.

      One would get nervous at that point. Surgery performed:

      She had a dermoid cyst and Chlamydia infection....

      The CA125 fell after surgery.

      Just a little story about CA125 value with numbers.

      Hence it is very important to take a 'base' value and go from there with a check up later (a few U/ml up or down are normal test method variability).

      Of course CA125 also has its rightful place as an ovarian/peritoneal/tube cancer marker, but it is not a 100% marker, it is false negative as well as false positive.

      Histology is the only certainty.

      I wish for you that the operation is smooth and with the best preservative outcome, quick healing and best normal histology!

      It must be nerve wrecking.

       

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