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Confused - Doc says chocolate cyst yet waiting for final pathology results - why?? Confused - Doc says chocolate cyst yet waiting for final pathology results - why??

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Unread 02-08-2008, 09:08 PM
Confused - Doc says chocolate cyst yet waiting for final pathology results - why??


I am so confused! I regularly research beyond the norm before I choose any health treatments. I feel as if I was totally blindsided by this and not sure that I have all the right information.

I had an upper respiratory infection. My GP placed me on an antibiotic, which I developed a rash from. I thought I had a yeast infection so went to my OBGYN. I walked in thinking I was dealing with a simple yeast infection and walked out with a 10x10x7cm mass on the left ovary.

The CA 125 was elevated and the MRI showed a solid mass. We discussed 3 possible options - ooprechdomy if benign, TAH if malignant and also a TAH if a low malignant potential.

I woke up from the surgery to find out that I had an extremely bad case of endometiosis. I was told that I had a chocolate cyst that was benign. I was detached from every organ possible.

My question is that everything I research says a chocolate cyst is non-cancerous. If so, here are the questions:

1. Why did the MRI show solid?

2. Why do all of the doctors continue to tell me that we still need to wait for the final pathology report? Doesn't the chocolate cyst diagnosis indicate that there is no need to consider cancer for this type of cyst?

I feel confident with my doctors and I am sure they have explained this to me but with the normal stress of the need of surgery and not having a clear understanding of what I have just gone through, I really don't think I am hearing what they are saying. My husband is with me when I speak to the doctors but he is in a state of selective hearing. (From diagnosis to surgery was just over 1 week - there was concern of the large mass being aggressive so the idea was get it out quickly). I thought it was something else and didn't research and ask questions with what I am being told it is. I think I have missed something but I'm just too confused. Any help out there???
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Unread 02-09-2008, 09:39 AM
Confused - Doc says chocolate cyst yet waiting for final pathology results - why??

Hi, you should call your doctor and talk to him/her about this, since it's something that is causing you concern.

In my experience (as a former nurse and as a patient), doctors always wait for the final pathology report before giving a final verdict. This is really a CYA type of thing, because in the rare event that something more serious is found on a pathology exam, they don't want to be liable for having told the patient that everything was fine.

I'm not sure why the MRI showed a solid cyst. You would need to ask your doctor about that. In any case, even most solid cysts (which are referred to as tumors) are benign too.

I don't think you have anything to worry about.


Unread 02-09-2008, 12:27 PM
Confused - Doc says chocolate cyst yet waiting for final pathology results - why??

I had a cyst removed along with my right ovary (it was enveloped within it) and it turned out to be an endometrioma/chocolate cyst. At first, my dr told me it was just from endometriosis and benign. However, after the final pathology came back there was a spot in the mass that turned out to be cancer. I don't mean to scare you, but it's important for the pathology to be done to be completely certain. Doctors can only tell what they see immediately after the surgery.

My specimen had to be sent to Harvard since they couldn't tell the origin of the cancer. It is very rare for cancer to arise from endometriosis. But that was the case for me. I have since had another surgery to remove my left ovary and a bunch of other stuff, no lymph nodes were involved thankfully, and have underone 6 rounds of chemo. Hopefully, my follow-up scans will be clean.

Please keep us posted on your final report!
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Unread 02-09-2008, 02:25 PM
Confused - Doc says chocolate cyst yet waiting for final pathology results - why??

Thanks to both of you. I know I have to have patience and wait but what you each say explains why I am confused. I thought I missed something in what the doctor said but, after your responses, feel that the information I am researching and the concerns I have may or could be legit. I know the doc's explained - my hearing and listening was not up to par! Sometimes reading it makes us hear it more clearly.

I should have the results shortly and will keep you posted. For now, however, I will consider this time a gift, treasure the opportunity to rest, and enjoy my family and friends. I can't change what it is, just would like to know so I can best take care of me.

This web site (which I discovered after surgery) is fabulous. I have already recommended the site to my doc's as a "must use" resource and support. The information is clear, refreshing, inspiring and truthful. Although I don't know any of the women, I feel as if I have newfound life-long friends. Again thanks for the feedback and most of all the much-appreciated support!
Unread 02-20-2008, 11:36 PM
Confused - Doc says chocolate cyst yet waiting for final pathology results - why??

Not sure if you have your results back yet, but after surgery I was told I had an endometrioma (visual inspection) but the path results came back as a borderline tumour. How are you going?
Unread 02-21-2008, 06:04 AM
Confused - Doc says chocolate cyst yet waiting for final pathology results - why??

I got a call from the doctor telling me that the chocolate cyst was benign but they found more in the pathology report than what they saw on the visual during the surgery too.

I also had two fibroids both benign and two dermoids classified as pre-cancerous. He said for the immediate moment all I needed to know is it is not cancer and that we would go into more detail (what they actually found and how we will be dealing with it) at my appointment that I have next Tuesday. I still find it hard to believe that all of this was growing inside me and that I never knew it. I had no symptom - incredible!

A very close friend of the family who use to be my GP before he retired said that as long as nothing leaked into any part of the cavity the basic approach is an every 3 month check-up to make sure nothing comes back. Of course, he said that he hasn't seen the report so he is just giving me a possibility and wait for the appointment. He tells me to be patient and the fact that the doctor wants to speak directly to me to go over the details is a sign of a good and thorough doctor. (My doctor went through the entire surgery report and notes with me in detail at my first follow-up visit too, which helped me a lot to have a better understanding of what was going on).

Is that the process you have been following? What do they have you doing as follow-up (i.e.: blood work, vaginal ultra-sound, internal exam...???)

I still have my right ovary and the doctor told me that we would be addressing HRT at the next visit as well. The doctor said he is not sure what it will be able to do as it was a salvage of the ovary but he is not sure it will do much of anything because of the damage. I am not realizing much change yet (some headaches, still crying all the time over nothing but not as much as in the first 2 weeks, a few hot flashes - 2 over the past 3 weeks, some subtle skin and hair changes - all solvable with the right beauty supplies). I don't notice a change in sexual desire but obviously don't know how the actually mechanics are working down there at this point. I plan to ask the doctor if outside stimulation of any kind is possible to see what the one ovary may be doing. At least this way I know before I start HRT.

I'm still wearing my surgical binder, which actually makes my belly feel better, and supported. I follow the HysterSisters checkpoints (I highly recommend that everyone who needs to visit this site does the same - my doctor is now recommending the site to patients - that's how much he likes it!) and am allowing myself to be a princess (even if I can't stand the dust bunnies!) I am rubbing my vitamin E cream on the outside incision. I still have some bleeding but it has slowed down a bit. I still sleep quite a bit and the smallest of activities (just to sit up for a while with visitors) can still exhaust me. That is ok - I have the time to sleep so I do.

So...Monday starts week 4 post-op. The doctor has sort of given me a heads up that I will need to be homebound for a little longer because of the severity of the surgery due to the endo being all over (there wasn't an organ or section of my middle cavity that it missed and was heading toward my lungs). In addition, my job requires me to be on my feet a lot with tons of walking around. (This is really my first vacation in a long while - not the way I wanted to get it but what can you do...)

Here is to Tuesday's visit (complete with my full list of questions for the doctor!) I will be sure to keep you posted.

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