Here's what the GYN said

Hi ladies,

So I went to the doctor today to get another opinion. If you remember correctly from the other day, I've had a TV U/S that showed nothing, normal CA-125, and a CT abd/pel with contrast that showed bilateral ovarian cysts under 2 cm. This new doc says she would rely on the u/s more than the CT because the CT is like 'looking from the window outside in' and they may not even be cysts, even though that is what report said. I even challenged her and said people with ovarian cancer have reported negative u/s and something showed up on CT and she still basically said she doesn't trust it. She was very kind and understanding but basically said there really isn't much to offer with the negative other results and offered me another u/s. I am so frustrated at this point and she said I should look at other things that may be causing my symptoms like GI but GI will not cause ovarian pain! IDK what to do right now, I straight up told her I didn't wanna be one of the statistics but again she is a young doctor and said basically that is all they can do until there is a test. She said taking me into surgery would be malpractice. I don't believe that, that's why there are laparotomies? It is exploratory. I'm so sad and frustrated right now, not sure if it is worth getting yet another opinion if this is all they are going to say. Without a sure-fire test for OC, we are at a loss. I even suggested the LPA or Ova1 but of course she said she doesn't recommend them as there are false-positives but they are supposed to be pretty good. What would you all do? I am so upset right now and have so many symptoms, bad bloating, shooting ovarian pain, back pain, nausea, etc. I know stress doesn't help but I really don't know what else to thing right now. Any opinions/experiences would be great! What percentage of you all were diagnosed with CT and nothing showed on u/s? I know u/s does not always show things. Not sure why she said that about the CT. Thank you!

18 Replies

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  • Hi , I had all the symptoms you have had and was given scan , ultrasound and ca125 test and all were clear luckily although I still worry . I do suffer with IBS and some of the symptoms are the same . I tried the juice plus diet where u drink a couple of fruit/vegetable shakes and change your eating habits .... I have to say I lost over a stone and never felt so healthy plus people were saying how well I look . I suffer with re accurring water infections due to prolapse and again causes back pain , belly . So try and take the docs advice maybe and maybe try a different diet or try buscopan tablets for IBS over the counter to see if they help . Hope u feel better soon x

  • I'm not sure you are going to like what I have to say, but I think that you need to listen to your doctor. Yes, you do need answers to why you are having such pain, but pain can be very deceptive. I still get the sort of pain I used to get when I had my period, which I could have sworn came from my ovaries and uterus - turns out it was my guts all along. So take her advice and have a GI consult. If that still doesn't give you any answers, go back to her and ask again.

    Please realise that the odds are actually in your favour, and your doctor is trying to protect you from unnecessary surgery that could have devastating side effects. Believe me, I know all about those - mine were so bad that I spent the next two years wishing that I had refused the operation, even though they were pretty certain (and were correct) that I did have cancer and they were almost certainly right in telling me that I would have died without it. Nobody set out to give me those side effects, they just happened, and that is always a chance you are taking in having surgery. If you were fairly certain you had cancer, it might well be worth taking the risk - though I have to say that five years later I am still not sure that it was worth it in my case. The ONLY thing that makes me think that it was worth it is the knowledge that I would be dead now if I had not had the operation when I did. You probably don't have cancer, as far as your doctor can tell - I'm sure she will continue to monitor you and if the balance of the equation changes, she will let you know.

    Best wishes for the future, and I hope that you get some answers soon! Do let us know how you get on.

    Barbara

  • Thank you, I appreciate your honesty. Are you saying the risk associated with laparoscopy? As I understand it it is what it is for...exploratory? Also does anyone know about color Doppler?

  • There are risks associated with any surgery. I had a laparotomy - open surgery - but I know a lady who had an exploratory laparoscopy and ended up needing a further operation to correct damage done during the laparoscopy. If she hadn't had the second operation she would have lost a kidney.

    No surgery is entirely without risks: you and your doctors need to make sure that these are balanced against the possible benefits of any such surgery. At the moment, your doctor clearly doesn't think that your symptoms justify the risk involved. That situation may change over time, but that seems to be her judgement now, and she is trained to make that judgement, whereas you and I are not.

    All the best,

    Barbara

  • Thank you for your reply.

  • Ask for an MRI scan, they can show more detail (really not fun but that's how mine was confirmed along with the bloods but I had other serious issues alongside the cancer). You could also ask for a second opinion and you are entitled to that, also if you can get the GI consult it possibly could show that it is a GI issue. Are your waterworks all ok? issues here can give kidney pain that mimics ovarian pain? IBS gives very similar symptoms to OC, which is why the cancer is sometimes missed and misdiagnosed, it could be the same in reverse?. I really understand your anxiety. Try to avoid symptom sorters on the internet, they can make you sure you have things you possibly couldn't have as you canread so much into them. Try to rule out all other possibilities before you push for the surgery this in itself presents its own issues. Your GP is trying to do her best but if you are unhappy with her then ask to see a more senior colleague? the most important thing is to get peace of mind and a definitive answer, don't stop until you have ruled everything else out. Good luck and keep us up to speed.❤️

  • I agree about requesting an mri scan. I had u/sound,mri and ct scan although mine was detected on u/sound after mri I then received an appt for a ct scan to include thorax as well as abdomen and pelvis. Sometimes things can get missed on one type of scan but show on another

    Best wishes hope you can get some answers, Sue

  • I was diagnosed by US and Ca125 but probably am in the minority.

    Take care x

  • Hi tmarie...Everyone is different. I had a huge tumor on my omentum and several other tumors scattered around my abdomen, and nothing showed on CT, MRI and PET......all negative. My ca125 was 539, and I had developed fluid in my right pleura( the lining of the lung). They drained 2 quarts.....no wonder I had a problem breathing! That and an epigastric full feeling were my only symptoms. So, in short, I'd get an other opinion, but with a normal ca125, you may be looking at another reason for your symptoms. I hope you get it all worked out. It's very frustrating, but at least you've started the ball rolling for whatever it may be. This disease, and many other diseases, are very tricky. So just do what you can for yourself, and leave the rest in God's powerful hands. Best of luck to you........JudyV

  • Hi.My symtoms were bloating at the time with no pain. I have always been treated for IBS as long as I can remember.Could have been an early indicator of cancer ,but never had any test done. I thought I was gaining weight. Went on a diet to reduce bloating. Bloating did not go away.Loss 10Ibs.Then found a lump in my groin.They thought it was a benign cyst because my CT scan did not show any signs of cancer.I went in for an operation to remove the cyst and they found I was full of cancer. They appogised for opening me up.My cancer was in my omentum which did not show on scans.If they saw cancer they would have stated chemo. If I didnt lose weight I may have not found the lump.I'm was stage 3 ppc/ovarian cancer.This is bad enough because they did not rush to treat me because they thought it was benign . I wish they had also done a CA125.It would have been another indicator that my cyst may have been cancer because it was over 1200 at the time.I think you should push for more test.It may not be cancer but time is everything if it's cancer.When I had my reoccurance, my only symtom was bloating. If "I" didnt push for an early scan, my cancer may have grown bigger.I caught it early.I am stable right now. My scans are now every 4 months.If I have any symtoms such as bloating,weight loss, I would first check my ca125. If it goes up they would do an erlier scan.Best wishes.Push for more answers.Lynn👍💙

  • My ct scan and ultrasound showed no cancer just coplex cyst and a simple cyst and a fibriod went for op the 3cm cyst was cancer spread to my other ovary and stomach and small bowel am stage 3 never had a oncologist at my op so I worry about that started treatment 2 weeks ago my ca125vl levels were 74 not that high get it checked xxx

  • I guess I just don't know what to do as these docs have nothing else to offer.

  • Before diagnosis I had many of the symptoms you are experiencing. I had more than one u/s and biopsies over 2/3 years and had various responses e.g: fibroids, shrivelled ovaries, gall stones, gastritis etc. I was only diagnosed with stage IV PPC after presenting with shortness of breath and was found to have fluid on my lungs. Hindsight is a wonderful thing, but I wish I had known then what I know now.

    That was January 2014 and I am still here, just going through chemo 3rd round and fighting, but I would advise you to "keep asking" now and get some answers. I have been to hell and back in last 3 years. It could have been found sooner.

    Good luck

    Lynne

  • How did they find the fluid on lungs? I have SOB. Thanks.

  • I had a conventional X-ray at the local hospital and after that everything went into overdrive. I was referred to a Respiratory Consultant and he aspirated some fluid from my lung. I was given an immediate CT scan and the cancer evidence was there in my abdomen. I had a biopsy taken through my abdomen and the diagnosis of stage IV PPC was made.

    Lynne x

  • I even called one of the top GYN ONC docs nurse here and she said they would do nothing more with my results.

  • Hello .. what I would do in your situation is firstly to ask for a second opinion with a Gynae/Oncologist ... and /or if any OC or Breast cancer in your family to ask advice from the genetic team in your area ...

    Any suspicion of cancer in the NHS is usually fast tracked .. however if you feel that you are being thwarted in your need to know more to be as sure as you can ..and can afford to do so ...pay for a private consultation with a Gynae /Oncologist Consultant

    .. you do not have to continue down this route once you have the information you require ..

    Write down your questions before you attend any consultations from GP onwards ..make sure they are all answered ..

    Never lose sight of the fact that the young Dr may be right ..

    Try not to link in with internet facts if you are not medically orientated .... the best way forward is through the people who know best ..

    I nursed for 48 yrs and know the system well ..

    I have been 5yrs in remission after being diagnosed with stage 111A OC in 2011 ..

    I hope this helps you with tough decisions ..

    Heather B

  • If you are still concerned ask for a HE4 blood test and a rescan in three months. However panicked you are if I've learned one thing over the last four years it's nothing moves quickly. Give your body a chance to fight back first

    LA

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