• Wrong Diagnosis

    Asked by DebbieP on Tuesday, May 13, 2014

    Wrong Diagnosis

    I would like to know if many ovarian or most ovarian cancer patients are given a wrong diagnosis first and after pain and bloating does not go away are given further testing than ovarian cancer is diagnosed, it happened to me. My daughter has have bloating for 4 months and was just now given a script for a ct. They just wanted to do a colonoscopy because they said it sounded likeIBS, but we talked and talked about it and she insisted on a ct first she was told no but she called back and used my example and they finally gave it. I do not carry the brac gene but we wanted to make sure because she is 37 years old and never had bloating before, hopefully it is IBS but do most of you agree we were right in pushing for ct? Colonoscopy is not scheduled till next month, ct is scheduled next Tuesday.

    17 Answers from the Community

    17 answers
    • cam32505's Avatar
      cam32505

      At the age of 37, it's hard to get any doctor to take your symptoms seriously as it is not common to have cancer or any major illness at that age. My sister-in-law's mother went to a pcp for 2 years and was treated for uti. She had cervical cancer. Had she just gone to a gyn, they would have discovered it during a pap test. But, some woman shy away from a gyn. Well, needless to say, she ended up at one anyway. But, it was advanced by that time. Keep advocating for yourself and your daughter. Sometimes, we know our bodies better than the docs do.

      about 7 years ago
    • Bb31565's Avatar
      Bb31565

      This is disturbing in many ways. One, how can a doctor tell you that it is ovarian cancer without a pathology test, surgery etc. Why wasn't an ultrasound done for abdomen and vaginal? Blood work? A CT should have been scheduled ASAP. I am not sure what type of doctor told you this or their reputation as a doctor but I would be looking for a new one even if it means driving a distance. I was told by my gyn/onc that I did have a mass that was discovered by an ultrasound a week even before I meet him and it had the signs of being OC stage 111B but he would know for sure once surgery was performed if it was cancer or not and would have to wait on path report to be certain on stage. Sometimes I read stories like your and realize that I have the best care and one less thing to worry about. Good luck finding your answers

      about 7 years ago
    • lilymadeline's Avatar
      lilymadeline

      I would get a new doctor as well! I agree with the other reply about that because scans should have been ordered months ago.
      But it is just plain horrible that it is such a struggle for a younger adult to get a scan sometimes. This is due to the insurance companies and all the paper work that they require the doctor to fill out in order to get approval. But I see young people at my cancer center all the time, teens and twenty something cancer patients seem very common to me now. Even babies get cancer and it does seem so tragic and heart breaking when it happens to someone so very young. Good luck to you and your daughter and I hope that it is just IBS.

      about 7 years ago
    • kalindria's Avatar
      kalindria

      YES! This is my story except I'm older and it took even longer! My primary care doctor is still on my $%#t list for her lack of insight into my very common symptoms for ovarian cancer. I spent all last summer visiting my doctor. What a waste! I had pills for IBS, a colonoscopy and more tests. It wasn't until a secondary tumor appeared causing symptoms that could not be ignored that she got me to a GYN and I was diagnosed.

      The GYN was great and did an immediate portable ultrasound. She could see a mass but not clearly enough for a diagnosis so she ordered a standard ultrasound for the next morning (the first open appointment) as well as a CA 125 test. By that afternoon, I had a preliminary diagnosis which was confirmed after a PET scan early the following week.

      I am stage IV and so mad at my primary doctor. I haven't seen her since. Probably won't.

      I am so sorry for your daughter but unfortunately, this cancer is tough to diagnose and when you couple that with a doctor who just isn't looking for it, you get this result.

      One thing I will share is that when they scheduled me for tests, I always told them I was available for ANY cancellations and wanted to get in AS SOON AS POSSIBLE. I got my scan two days earlier than originally scheduled and also started chemo sooner than they'd suggested. Be a pest and let the nurses, doctors and schedulers know you want to get in NOW!

      I was also that patient who brought homemade cookies, candies, flowers and stuff on random occasions so the staff and doctors remember me. I truly believe we can impact the care we get if we make ourselves memorable. It can't hurt, right?

      Good luck to your daughter and I'm here if you want to vent or have any other questions.

      about 7 years ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      I had my primary doctor only a few months .My regular doctor ,who I had for years retired from private practice.So this new doctor did't know me and I didn't know him.Had been treated for gastritis previously and been on Prilosec for two years and was doing fine. One day noticed a tightening like a belt across my abdomen then it subsided,but it scared me.Made an appointment right away with the doctor.Started having increased burping and slight feeling of bloating.Told my doctor about this and he changed my gastritis med.Two months later had to stop new med.,didn't agree with me.Developed a persistent cough along with the burbing.Doctor ordered chest X-ray and put me on antibiotics for a month.No relief from symptoms, went to ear,nose throat doctor and after exam diagnosed with reflux disease.Doubled my Prilosec med, raised the head of our bed and I slept on two pillows.This started in Jan. of last year.By end of June .nothing seemed to be working,still coughing and belching.Finally in early July unable to eat felt extremely bloated.Went to go see my primary .Demanded further testing be done.He ordered a CT scan just to placate me and that is when they found the tumors and the Ascitis.I was let down by not one but two doctors.If I had it to do over I would have been more aggressive with my care.Lesson learned. You are right to push for further tests,way to be an advocate for your daughter.Take care both of you and let us know how you both are doing.

      about 7 years ago
    • TheRose1392's Avatar
      TheRose1392

      Unfortunately this happens too often before ovarian cancer is diagnosed. This is why it's called the "cancer that whispers". Many of its symptoms mimic other symptoms. This is another reason why Ovarian Cancer is often not diagnosed until the late stages. Insist on. CA 125 blood test also. It will help see if something is going on. I'm Stage 3C, currently in remission for almost 11 months.

      about 7 years ago
    • Gumpus61's Avatar
      Gumpus61

      My wifes diagnosis was a night mare, She was fortunate to have enough abdominal pain to justify a look for appendicitis and drive the ct scan......then three days of double talk followed by a needle biopsy where the technician targeted a different area than we were told there was a "mass"......Tech said.......Oh, you have cancer all over the place. fist time we heard the word. My wifes cancer is primary Peritoneal stage 3C. Same symptoms as Ovarian but tends to be more widespread when discovered. If indeed your daughter is diagnosed with Cancer you have a great responsibility that Lynne I am alluded to....be an unending advocate for your daughter and insist on answers to tough questions. Your not alone !

      about 7 years ago
    • LMMitchell's Avatar
      LMMitchell

      Same scenario here...Gyno kept telling me I was too young, it was just cysts. I had a hernia repaired & she ordered a transvaginal ultrasound. It showed "cysts" on my ovaries & a uterine fibroid. She said they would retest in a year to see if there were any changes. The next year another "mass" showed up in the uterus so I asked for a hysterectomy instead of going through a bunch of testing on the mass. They did a CA 125 and it was 95 but they blew it off saying it was caused by the cysts & fibroid. All along I kept saying I have all the ovarian cancer symptoms and she kept telling me I was too young, you just have cysts. When I went for the surgical briefing I said to the surgeon "you have my permission to take my ovaries if they look sketchy". My last words when being wheeled away to surgery were "I hope you don't find any cancer". When the surgeon went in to do the hysterectomy he found the tumors. One was 7cm and the other 9cm. He was shocked-in his own words "mortified". He closed me up and referred me to a Gyno oncologist, and irresponsibly told me there was no rush to have surgery. He had the tumors tested and they were not cancer but LMP. My case is rather unique in that the tumors were not cancerous, but there was cancer in a couple of lymph nodes, which he did not do any testing on so he had no right to tell me not to rush. I of course did not listen and had the second surgery right away. I had to go through 6 cycles of chemo and my oncologist doesn't know what to make of the fact that there was only cancer in the nodes. We are all just putting our faith in God that it means it is gone for good and won't come back. DO NOT GIVE UP until you have exhausted all avenues and gotten all the answers you need to feel confident that it is not cancer!!! Early detection is key and unfortunately most of the time ovarian cancer is found in the late stages.

      about 7 years ago
    • kalindria's Avatar
      kalindria

      LM- what is LMP?

      Your situation sounds like it was so frustrating. I'm so happy to hear you kept after them until you got some answers.

      about 7 years ago
    • LMMitchell's Avatar
      LMMitchell

      LMP is low malignant potential.

      about 7 years ago
    • kalindria's Avatar
      kalindria

      Thanks!

      about 7 years ago
    • DebbieP's Avatar
      DebbieP

      Just wanted to let you wonderful sisters know that my daughter had a ct on Friday, tech said lots of poop in colon, said doctor would get results, so she will get results Monday morning. We are both thinking this is what is causing the bloating. Colonoscopy is scheduled in June. Pretty confident its not ovarian cancer but will feel better when she gets a phone call saying no tumor seen. We just insisted on CT as with my own issues they were looking in the wrong area, as we all know happens most of the time. Just wish all OB/family doctors would put this cancer on top of their list along with checking for colon issues. Thank you all again, when she gets finally diagnosis I will let you all know. Thank you all!

      about 7 years ago
    • kalindria's Avatar
      kalindria

      Good news, Debbie. Please keep us posted and we are all hoping for no ovarian cancer for your daughter.

      about 7 years ago
    • NEEMAandGUG's Avatar
      NEEMAandGUG

      Wow. Neema went to her primary end of January this year. Got a clean bill of health. Had Pap smear tests etc. Was sick in. February and in early March I brought her to the ER and they gave her IV liquids to bring her blood pressure in line and gave her a choice to be admitted or see her primary within two days. They tested her for the flu and it came back negative. I took her to her primary and the dr told neema it was the flu and it would take at least six weeks to recover. We called the dr every week for three weeks as Neema spiraled down. Each time we were told it was the flu. On March 31 I brought Neema to the dr and we saw a PA he sent us to the ER. It was there that the ER dr found ascites and two days later they found the cancer cells in the fluid. The blankie blank primary completely missed the diagnosis. So yes the infernal disease can fool primary dr sand cause some anger towards them. Now Neema is so weak. If we started chemo last March god the what ifs hurt so much.

      about 7 years ago
    • kalindria's Avatar
      kalindria

      Let it go. Please just let it go. Wondering about 'what if's' won't help and you need your energy and focus now to be on helping Neema. Chemo is tough at the beginning but gradually Neema will tolerate it better as it kills the cancer. Be strong and be glad she finally got her diagnosis.

      I used to beat myself up thinking I should have complained more, should have asked for more test, could should would and it's all so pointless. Stage IV is where I am now and Stage IV is what I have to deal with. So I will.

      Please know I am here for you and Neema - praying, holding your hand, lifting you over the tough parts. We're all in this together. We're here for you both.

      about 7 years ago
    • MindMargins' Avatar
      MindMargins

      My oncologist told me that a woman should always go to a gynecologist first for ANY unusual symptoms in her abdomen. Rule out the worst possible diagnosis first (ovarian cancer), then look into other less deadly causes. Sadly, I've heard of so many women being told by their family doctors that it's a UTI, menopause, IBS, etc and told to "wait and see." By the time they are diagnosed, they are late stage. Thankfully, my doctor insisted I see a gynecologic oncologist immediately--and we caught it early. Spread the word to all your friends. See a gynecologist FIRST!

      almost 7 years ago
    • DebbieP's Avatar
      DebbieP

      My daughter did have a CT of abdomen as well as a MRI no cancer showed up in either test.
      It did show a malrotaion which she is scheduled for surgery to correct. We are still not sure why she is bloated we think becauae of the malroarion but surgeon said she does not think so. Could be chronic constipation, she has had blood tests and the above test I mentioned. We are hoping surgery will help. Thanks for all your responses.

      almost 7 years ago

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