My Story---need advice

cpumpkin109

Hi everyone,

I'm a Thy Ca survivor, with an undiagnosed ovarian mass.  Long story short, they found a solid mass in my left ovary in March, were supposed to remove it in April, removed the wrong ovary, and I still have a mass 8 months later.  All of my tests have come back indeterminate.  Was wondering if anyone had any insight into any of this.  I am just so beyond tired of not getting any answers...everytime we think we are going to get somewhere, I get a similar result...good parts and bad parts.  After the last MRI, we decided to wait (since I didn't want to lose my other ovary unless necessary) until December to do another MRI and compare, but over the past few weeks, I've been having a lot of pain on my left side again, now radiating into my hip and down my leg....not constant.  It comes and goes, but painful enough to have me worried again.  Any help would be appreciated.  God bless.  Here are the results of all of the tests I've had:

 

Here were my original U/S results:

3/5/15:

Impression:

1. Mild thickened endometrium w/o associated vascularity. Recommend correlation w/ patient’s menstrual cycle and cont. f/u as indicated.

2. Small (2.4 cm) probably left ovary hemorrhagic cyst. Large (3.5 cm) solid appearing left ovarian lesion w/o associated vascularity, indeterminate. Recommend follow up pelvic u/s in 6 weeks and/or MRI w/ IV contrast for further evaluation.

 

Right ovary measures 2.7 x 1.6 x 2.2 cm. Left ovary measures 7.1 x 4.8 x 3.8 cm. There is a new hypoechoic cyst w/associated fibrin strands noted in the left ovary measuring 2.4 x 1.9 x 2.6 and most likely a hemorrhagic cyst. There is also a new isoechoic solid appearing lesion in the left ovary measuring 3.4 x 3.1 x 3.5 cm without associated vascularity, indeterminate.

 

So, I had a small hemorrhagic cyst on the left ovary accompanied by a large solid lesion.

 

I had my surgery on 4/21/15 and wasn't told until 2 weeks later that they removed the wrong ovary.  Had to wait 8 more weeks to have the follow up U/S, which is below.

 

6/15/15-U/S #2:

The uterus and right ovary are not visualized compatible with patient’s known history of hysterectomy and right oophorectomy.

 

The left ovary measures 5.3x3.4x2.3 cm. In the left ovary there is a septated left ovarian mass with stable solid and hypoechoic components. There is internal flow within the septation on color Doppler images. The isoechoic solid appearing avascular component measures 2.1 x 1.8 x 2.1 cm. The stable avascular hypoechoic component measures 2.8 x 2.7 x 2.9 cm.

 

Impression: Stable appearance of indeterminate septated left ovarian mass with solid appearing and hypoechoic components. There is internal flow within the septation. Follow up MRI with contrast recommended for further characterization.

 

I got a call from my family doc saying to call a gyn/onc and get this removed asap.  I went to a great facility in the city near me, and she said that it was possible that it was a dermoid, however it was possible it was more serious, and I do have some concerning family history, so I was to wait a few more weeks and get an MRI.

 

7/29/15 MRI:

Multicomponent cystic lesion within the left adnexa. There are areas of precontrast T1 hyperintense signal within this lesion suggesting hemorrhagic or proteinaceous cystic components. Enhancing intervening solid tissue within this lesion. Differential condideration would include multiple ovarian cysts, some of which are complex or cystadenoma/adenocarcinoma.

 

There is a left adnexal multicomponent predominately T2 hyperintense, T1 hypointense lesion. The conglomerate dimensions of this lesion measure approximately 5.7 x 4.0 x 2.7 cm Portions of this lesion have hyperintense T1 signal on precontrast sequences. These T1 hyperintense components are as follows---the more lateral of which measures approximately 7 mm and the more anterior of which measures approximately 11 x 6 mm. Post contrast sequences demonstrate intervening enhancing tissue within this left adnexal mass. The area of enhancing tissue measures approximately 1.5 x 0.8 x 2.5 cm.

 

The Dr. called me after the MRI and again said it was indeterminate.  Some things are concering, others are good.  She said that the radiologist was OK with waiting a few more months and repeating the MRI so that we could compare MRI to MRI, instead of MRI to U/S.  I agreed, because honestly, I was just mentally exhausted from the whole thing.  Now, I'm having pain.  I finally put a call out to her today, and we've been playing phone tag.  I seriously just can't take anymore not knowing.  It would be so much easier to deal with if I knew WHAT I was dealing with.  I would appreciate any input so much.  Thank you!

 

 

mopar

SO SORRY FOR YOUR SITUATION

First, I must address the 'wrong ovary removal'.  This is unacceptable, and I would consider legal action.  I'm not a money-hungry person, but if, and I mean IF something should come of this situation, this mistake could have cost you in a serious way.  I really hope that you find a patient advocate who can assess that situation for you.

Having said that, please know that this may not be cancer.  There is truly no way to know for certain unless a biopsy has been performed.  Can you ask if they at least biopsied any of the ovary that was removed?  I don't see indication of that in your report.  Either way, given you still have the offending ovary in place, waiting is not an option.

Have you ever had a CA125 blood test?  It's a tumor marker for OVCA.  While it is not conclusive, it is a part of the whole diagnositic picture.  If you have never had one before, the first one will become your baseline, so-to-speak.  First, a range of 0-35 in most labs is considered 'normal range', although that's debatable.  Having a second test a month or two later will tell them if there is an increase, possibly indicating cancer.  I will caution that this level can go up and down for a variety of reasons, so we can't hang our hat on that number - but again, it is  part of the diagnostic process.

I agree with your physician - seek out a good gynecologic oncologist who will address this immediately.  I would not wait for another MRI.  I feel your anxiety and I can relate - tell me what I'm dealing with and I'll deal with it.  If you are in the Michigan area, I know of an excellent byn/onc in SE Michigan. 

Please keep us informed.  I will be praying for a good outcome for you.  

Monika

 

 

Kaleena

See a completely different medical facility - Now!

Since I have worked in the legal field for over 30 years, I suggest that you speak with a medical malpractice firm about your situation.  

Further, you should leave the medical facility where this was done.  If not, you may only experience more problems and may not take your situation seriously.  It is just unreasonable that they are making you wait.   Is the pain in your leg feel like sciatic?   I had the same pain which eventually got worse over time.   You need to seek another facility.    Get all of your records now.   I would be curious to see if they would give you the records from your surgery.   Thats why you need to seek legal help too.

Don't play phone tag.   Go to another facility and doctor.

My best to you,

Kathy