Scared!!

Hi everyone,

I found this board and have some questions. I am going to the GYN after 2 months of waiting. I don't have a diagnosis of anything as of yet besides 'bilateral adnexal cysts likely physiologic.' They are 1.8 cm and 1.5 cm. This was a CT, U/S showed nothing. This was 5 months ago. They GYN I saw then was clueless. She told me regarding my concerns of OC 'oh that's easy to diagnose, it you have an ultrasound and it is negative, you don't have it!' I was so stunned and knew this was BS and know that arguing will get me nowhere, so I decided to go back to GP and he did the CT. Since then, I have moved on because none of them in that group took me seriously. I now have a great GP who does take me seriously. She doesn't think I have anything to worry about given the CT saying cysts and normal CA-125 but I am going to the new GYN this week. Besides this, I have constant bloating that I noticed my pants getting tighter and also have had on and off shooting pains to ovary and left low-back pain for months. This has been going on probably since March! I know stress can be a huge contributor and I am going through perimenopause @ almost 45, have been for years. I have so many questions for the new GYN (she has good reviews) and am hopeful but I know they cannot definitively tell you anything unless you have surgery. I am sure she is going to want to redo the u/s and CT before anything else to see if they are still there. I know the cysts can be due to period, as the day of the CT I did get my period but that doesn't explain the bloating and pain. I know the bloating is also a symptom of peri but I haven't been feeling good either lately with fatigue and nausea. I guess I am asking what percentage of yall had small 'cysts' like mine and it turned out to be CA and also how many had negative u/s but still had something? Anyone have the Ovacheck or Ovasure tests? I know there is no 100% test but these seem promising. I have also read on the LPA test but cannot find any recent info? This looks so promising for diagnosis, anyone hear anything? Sorry for the rant but I am so anxious to see the new doctor and get on with this and find out what is going on and why I feel huge all the time. Thank you all for any info and God Bless! P.S. Is everyone here from the UK?

7 Replies

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  • Yes - this is a UK based site and the majority of us are in the UK but with some friends overseas too.

    There are good ovarian cancer boards in the US, which I'm guessing is where you are.

    Have you looked at Team Inspire and OCRFA? You'd find people more familiar with the complications of the US medical system there, I think. Good luck!

  • Hi tmarie ! It's understandable that you are worried and I commend you for being so diligent and proactive about your health concerns. I cannot help you with ferreting out a possible reason for your pain and bloating because I am not a Dr. But you know, I am sure of the symptoms of OC. I never had any symptoms but was DX at 3b after a hernia operation in which tumors were found in the Omentum.

    Your CA 125 numbers are normal and a recent CT only shows the cysts? Can the cysts be biopsied? Keep asking questions and demanding firm answers. Is it possible to go to a gynecological oncologist for exams and tests? Those guys know their stuff and won't take your concerns lightly.

    I noticed you used "ya'll" so am assuming you are somewhere in the southern US? I live in Charleston, SC. This site is primarily UK ladies and gents but has quite a few posters from beyond its beautiful shores.

    Inspire.com was mentioned by Mac27 as a US based support site and I participate there as well on their OCRFA, or ovarian cancer forum. As it is here, there are lots of experienced OV ladies sharing, caring, and providing what support they can.

    Good luck and please let us know what your new gyn has to say! Big ole southern hug for now.

  • No I am not from the south lol but I was in South Carolina for almost 4 years. I am actually originally from NY but live in CA. I have seen the other sites but also wanted to post here. I am going to GYN this week and I wish she would refer me to GYN/ONC but not sure if that will happen. I assume she will want to redo tests to see if they have grown or are gone and then go from there. Maybe she will do a laparoscopy? We will see and I will keep you posted. Can I ask when you were diagnosed and how you are doing? How old are you? Thanks for responding.

  • Hi tmarie, I can see you are totally all over the place at the moment. I suggest you take it day by day and try not to worry. You dont know what the gynae will say so wait until you see her. If she feels it necessary to refer you to a gynae oncology surgeon, I am sure she will give you reasons for doing that or for not doing it as the case may be. There is no point if wondering what can or will happen as you will be totally stressed by time of your appointment. So deep breaths and tiny steps and take it day by day at the moment, all the best

  • I was diagnosed PPC 3b in early September. 2015. Cancer was caught during a routine ventral hernia operation. I had debulking surgery on November 4th 2015 and they found a tumor in my left fallopian tube. So then the diagnosis changed to fallopian tube cancer that has spread to the peritoneum and Omentum. But there was very little if that, thank God. At present, I'm doing great! I got through 6 treatments of carbo/taxol with 4 of them IP chemo treatment. I'm at the 8 month mark after my last chemo and I feel great and energy is back, appetite back and hair back! I see my oncologist again mid December My CA125 is holding steady at 6.5.

    I am 66 years old. 3 daughters and 2 grandsons. I am a freelance graphic designer after working in newspapers for 25 yrs. Of course, cancer has to hit while I was contemplating retiring. But working does keep me from worrying!

  • That all sounds really stressful for you tmarie. I hope that having found new doctors that you have more faith in, you will be able to feel more confident in the way you are being screened and treated.

    One of the tests we use in the UK is CA125 which is a blood test looking for tumour markers. If it is elevated it is often (but not always) an indication that there is something wrong with the ovaries, although it can't specify if it is cancer, a cyst or whatever.

    I hope you are able to get some answers soon! Keeping my fingers crossed for you.

  • Hi tmarie.....I am from the US. I live in southern NH, so I have access to Mass General.

    To answer one of your questions...yes, you can have negative ct results and still have something going on....BUT, when my ct, pet, and MRI were all neg, my ca125 was 539. So, very good news that yours is within normal limits. My surgery showed what was lurking in there!

    I would follow up with your GYN until you're satisfied. The fact that you're headed for menopause may be the culprit here.

    You'll find all on his site very helpful. I pray you won't be joining our "club".

    BEST to you.......JudyV

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