Doctors are brushing me off

KatieLea
KatieLea Member Posts: 5

Anyone else have doctors brush you off for months? I'm not diagnosed quite yet, but also have the signs and swollen lymph nodes in groin and neck. As of lately, my lower back and hip are sore to touch, so now I'm extra worried that help is too late at this point since my bones hurt.

It started as back pain after stopping my birth control. I brushed it off for weeks until finally caving and making an appointment. At the same time I got the urge to urinate A LOT. Tested for UTI, came back clean, so dx was interstitial cystitis. NSAIDS worked for back but urge to pee stayed and lymph nodes popped up.

 

Given amoxicillin for a virus I didn't have. Then loose stools started and constant burping. Begged for answers and got referred to a GI. Colonoscopy and endoscopy came back normal so dx was GERD and IBS.

 

Getting worse on meds so went back to GP. Told me IBS, and lymph nodes are just there, then asked me about my anxiety.

 

Switched GP who ordered a stool culture: dx - c diff! So angry I went back to my first gp to tell him. He then said he'd refer me to a specialist at a clinic four hours away. Still waiting on that appointment. I asked for a CA 125 test and he said no. 

 

Expressed my concerns of ovarian cancer to new GP and she said tests all normal so she wasn't worried.

 

I've had CT scans only showing a cyst that went away, and trace free fluid in pelvis. Chest X rays for pain in my chest came back normal, cbc have only showed slightly elevated bilirubin and neutrophils. 

 

I took it upon myself to pay for a CA 125 (9) and CEA (1.2) myself, both showing normal range. I know these tests aren't always elevated so I was relieved for like a day and then worried I'm just one of those people who doesn't have an elevated CA 125.

 

Sorry for the long post.. just wondering if anyone here has had all normal tests with symptoms and got diagnosed later? I clearly have lymph nodes that are hard, palpable, and on CT but no one will biopsy? My doctor's even felt them and said they're enlarged and hard. I'm not sure how to push any further. My OB says endo, and scheduled me for a laprascopic but she's on vacation and it's not for another few weeks, which is too long for me considering I'm getting worse and have lost 14 lbs since April now.

 

Symptoms:

Lower back pain

Swollen lymph nodes in groin and neck

Indigestion

Burping

Loose stools

Stomach cramps

Constant discharge (normal PAP)

Tender spot on lower back and hip to touch

Weight loss of 14 lbs since April 

Comments

  • Palor
    Palor Member Posts: 21
    edited June 2018 #2
    Hello, KatieLea,

    Hello, KatieLea,

    My CA125 and CEA and CA199 were all normal, CA153 was elevated.  My only symptom were bloating and lots of gas.  Later I was diagnosis with stage III OC.

    Palor

     

  • KatieLea
    KatieLea Member Posts: 5
    Palor said:

    Hello, KatieLea,

    Hello, KatieLea,

    My CA125 and CEA and CA199 were all normal, CA153 was elevated.  My only symptom were bloating and lots of gas.  Later I was diagnosis with stage III OC.

    Palor

     

    Thanks for replying, Palor!

    That's what concerns me. I haven't heard of CA 153 but I have another appointment to push for more tests tomorrow so I'll bring it up. I surprisingly have had no bloating whatsoever. Did you have imaging tests done too? 

  • Palor
    Palor Member Posts: 21
    edited June 2018 #4
    KatieLea said:

    Thanks for replying, Palor!

    That's what concerns me. I haven't heard of CA 153 but I have another appointment to push for more tests tomorrow so I'll bring it up. I surprisingly have had no bloating whatsoever. Did you have imaging tests done too? 

    Yes, I have CT and ultrasound

    Yes, I have CT and ultrasound done, but before the surgery, it was not conclusive.  The doctor even said "You do not have OC".

  • KatieLea
    KatieLea Member Posts: 5
    edited June 2018 #5
    Palor said:

    Yes, I have CT and ultrasound

    Yes, I have CT and ultrasound done, but before the surgery, it was not conclusive.  The doctor even said "You do not have OC".

    What lead to your diagnosis

    What lead to your diagnosis if you don't mind me asking? I'm sorry, I know I haven't been diagnosed and do not want to seem insensitive. My family has many histories of cancer, including my mom mom who is a breast cancer survivor so I'm very worried. I had a scare last year when my gyno found a small lump and have been grateful after it was found to be just normal wear and tear from nursing.

    I've had two CT scans and both were "unremarkable" so no one wants to look further without a tumor popping up on mine. 

  • Palor
    Palor Member Posts: 21
    KatieLea said:

    What lead to your diagnosis

    What lead to your diagnosis if you don't mind me asking? I'm sorry, I know I haven't been diagnosed and do not want to seem insensitive. My family has many histories of cancer, including my mom mom who is a breast cancer survivor so I'm very worried. I had a scare last year when my gyno found a small lump and have been grateful after it was found to be just normal wear and tear from nursing.

    I've had two CT scans and both were "unremarkable" so no one wants to look further without a tumor popping up on mine. 

    I had a large lump in my

    I had a large lump in my abdomen for years, I did not bother to check it up as there is no other symptoms.  Lately as it becomes larger and bloating and lots of gas, I went to check up, and because the size (close to 20 cm), it has to be removed.  During surgery, they found I had cancer, so the debulking type of surgery was performed instead of just removing the mass. 

  • KatieLea
    KatieLea Member Posts: 5
    edited June 2018 #7
    Palor said:

    I had a large lump in my

    I had a large lump in my abdomen for years, I did not bother to check it up as there is no other symptoms.  Lately as it becomes larger and bloating and lots of gas, I went to check up, and because the size (close to 20 cm), it has to be removed.  During surgery, they found I had cancer, so the debulking type of surgery was performed instead of just removing the mass. 

    Well I hope you at least have

    Well I hope you at least have some relief now! Thank you for replying and sharing your story with me. Praying for positive treatment and progress for you! 

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    Symptoms

    Hi Katie,

    I'm sorry you're going through this.  It's very frustrating and this happened to a lot of us before being diagnosed.  The CT scan was pretty much clear. which is good.  But the swollen lympgh nodes and fluid in the abdomen are curious.  Has anyone given you any guess as to why these are there?

    If I was in your position, and you don't get any answers soon, I would try consulting with a functional medicine doctor or naturopath.  They work hard to find the cause of symptoms and address them.  Hope you get some answers soon.

  • KatieLea
    KatieLea Member Posts: 5
    edited June 2018 #9
    Tethys41 said:

    Symptoms

    Hi Katie,

    I'm sorry you're going through this.  It's very frustrating and this happened to a lot of us before being diagnosed.  The CT scan was pretty much clear. which is good.  But the swollen lympgh nodes and fluid in the abdomen are curious.  Has anyone given you any guess as to why these are there?

    If I was in your position, and you don't get any answers soon, I would try consulting with a functional medicine doctor or naturopath.  They work hard to find the cause of symptoms and address them.  Hope you get some answers soon.

    Thank you. I appreciate it! I

    Thank you. I appreciate it! I was super happy with the good CT, but I agree about the lymph nodes and fluid. I've asked for a biopsy and get brushed off and told they're only "slightly enlarged." It's definitely frustrating and I'm sorry so many women have to go through this long process! We know when our bodies aren't right and it's a shame. I've been to the doctor more in the last 4 months then the last 10 years. 

    Thanks for your advice! I'll have to look into both around me. We just moved to another state so I'll have to do some research :) 

  • jontaejones
    jontaejones Member Posts: 8 Member
    edited June 2018 #10
    My girlfriend was diagnosed

    My girlfriend was diagnosed with Stage 3 OC last year and is currently in remission. She had major bloating and serious stomach pains and went to the hospital.

     

    So, doctors will play the %s. A lot of symptoms, especially in the vague and largely opinionated manner that patients describe them are common to both serious diseases and a whole lot of nothing. So, if you're a young person, they're not going to have you go through a whole battery of tests for worst case scenario. That would be costly, and freak the patient out and waste a lot of their time and $.

    By all means, get the lymph nodes checked out. But I would say at some point, you have to trust the data. They use CT and CA-125 to monitor recurrence in late stage OC survivors where the odds of recurrence are good. When those tests are good, we go celebrate.

    I also don't think it's possible to have an Ovarian Cancer that has spread to lymph nodes, when you have no tumor in the ovaries. My girlfriend's tumor was the size of a grapefruit. Literally. But again, not a doctor.

    BTW, did you know in some countries where healthcare is free, the wait for something like a colonoscopy or endoscopy is like 6-8 months? Even if you are of elder age and have the symptoms. Yea, it's true. So, anyway it could be worse. Wink

  • Benita1974
    Benita1974 Member Posts: 16
    Palor said:

    I had a large lump in my

    I had a large lump in my abdomen for years, I did not bother to check it up as there is no other symptoms.  Lately as it becomes larger and bloating and lots of gas, I went to check up, and because the size (close to 20 cm), it has to be removed.  During surgery, they found I had cancer, so the debulking type of surgery was performed instead of just removing the mass. 

    hi palor,

    hi palor,

    thanks for sharing your experience here. may I ask what inconclusive means in your ct and ultrasound results? does it mean can't be determined? in which case it's usually required to have surgery to remove it, rigjt? I am just curious how could the doctor said that you don't have oc but it's diagnosed as oc during the surgery. it's really scary that there is no suspecion at all by the doctor but ended up having it. sorry for so many questions. I am going to have surgery soon so I am worried about how things could go.

     

    wish you have good treatment and stay healthy!

  • Bea_D
    Bea_D Member Posts: 5
    edited July 2018 #12
    GP in the weeds... and me, right along with him.

    I started with an endoscopy and colonoscopy in Jan 2016, symptoms: terrible gas, bloating, diarrhea, constipation and stomach pain, I thought I had an ulcer.  Diagnosis, H. Pylori, everything else normal, prescribed a 2 1/2 week course of very strong antibiotics, it was downhill after that.  For 7 months I suffered with more of the same symptoms, just amplified.   My skin became dry, I was losing weight, eating GAS-X like they were candies, diahhrea, constipation,dizziness, abdominal pain, I got worse and worse.  My GP treated me for lactose intolerence, IBS, leaky gut, God knows what else.  My MAR 2016 blood test were fine, but I felt so awful,  I didn't know what to eat, everything made me sick.  I continued to work, no choice, taking whatever prescriptions my GP doled out.  Out of desperation in late AUG 2016 I went back to the gastro, I thought maybe he had knicked something, maybe candida overgrowth from the antibiotics.  He took one look at me and said, "This isn't gastro, you need to go and have a blood test and a PT Scan. Pet Scan and C125 blood test results the next day, oncologist meeting the day after that,  surgery 2 days after that ,09/02/16. Right ovary cancerous, encased within a 9lb mass/sac of fluid, cut from stem to stern, radical hysterectomy, 6 hours of debunking, diagnosis: stage 1c ovarian cancer.  I was lucky, that sac prevented the cancer/fluids from spreading, 6 rounds of chemo, cancer free 1 year 7 months, C125 results today 6.3, C125 levels pre-diagnosis, 47,000.  Not once did my GP ever think to send me for a C125 blood test, he saw me every 2-3 weeks, took my $30, I was losing weight, but he never considered cancer, he stopped hearing me.  DON'T LET THEM BRUSH YOU OFF. You know your body better than anyone.

  • Bulldogsrule
    Bulldogsrule Member Posts: 5
    edited October 2018 #13
    KatieLea said:

    Thank you. I appreciate it! I

    Thank you. I appreciate it! I was super happy with the good CT, but I agree about the lymph nodes and fluid. I've asked for a biopsy and get brushed off and told they're only "slightly enlarged." It's definitely frustrating and I'm sorry so many women have to go through this long process! We know when our bodies aren't right and it's a shame. I've been to the doctor more in the last 4 months then the last 10 years. 

    Thanks for your advice! I'll have to look into both around me. We just moved to another state so I'll have to do some research :) 

    Good CT scan to stage 4 in 2 months

    Hi! I would seriously recommend going to see a gynocological oncologist and ask questions. I had issues for 9 months before diagnosis. It took my left lunch collapsing form the fluid build up to send me to the hospital because I couldn't breathe. They drained liters of fluid from lungs and abdomen. A week later, stage 4 OVC. Ironically. 8 weeks before a CT scan showed nothing was wrong. I had protein show up in my urine, so my regular Dr was monitoring it. My gyno thought PID, but no real reason to believe I had it except couldn't figure anything else out. I had the same type of symptoms you and others describe for 9 mo! Bloating, sensations that weren't specific enough but felt not right in my pelvis and abdomen, urinary issues, constipation, diarhea, general "not right" feeling, lower and upper back pain and aches for years, etc. Had exams, ultrasounds, CT, etc....nothing showed up. I didn't know enough to ask about CA 125 or ask about BRCA testing. Come to find out, I was BRCA 1 positive, found out my dad's sister died of OVC at 45 in 1971 and the worsening stomach issues was the building up of fluid until it collapsed my left lung. The only reason they found it was the Dr at the urgent care sent me to the trauma unit at the hospital when I could no longer breath to walk from car to building or room to room at the urgent care clinic. X-ray showed fluid. A week later, they disgnosed me. My CA 125 was over 1200 in the hospital. I am not sure if they can really confirm a diagnosis before something concrete shows up in bloodwork or in exploratory surgery or a scan, but I wouldn't stop until you feel better or they can confirm what exactly is happening. Find a good clinic near you who specializes in gunocoloical cancers because they see this every day and regular gynos, etc do not necessarily and/or they are only involved up to a certain point, then patient ends up seeing oncologist....and gyno may never even find out how the diagnosis and treatment actually played out. 

    One thing that still bothers me greatly is how doctors rule out the most common issues first. I would say if that doens't turn up something quickly, then start looking at the hard to diagnose things and less common things it might be that could be fatal or chronic if not found quickly. It is almost like they want to go the easy route first and thens top unless something really major happens. Meanwhile, you burn up months of time that could have been used to help prevenemt or minimize the pending diagnosis....and all the while, you may even be getting worse and worse and discover it is too late...all because of the lost time. Ridiculous.

    Finally, I would recommen naturopathic options....look into integrative medicine, naturopathic options, etc before giving up. I am currently reading Dr Nasha Winters book, The Metabolic Approach to Cancer. Fascinating and logical information! I have a phone appt with her soon, too. Hoping to learn how to manage my cancer to keep it from growing uncontrollably and/or spreading. 

    Good luck!

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    Definitely!

    Dear KatieLea:

    Prior symptoms.  Lower back pain, left leg pain, burping (lots), sometimes difficult swallowing unless I had some water; feeling unwell, peeing a lot.

    Prior to my diagnosis, I started having lower back pain.  Actually it felt like pain in the lower middle of my body.   And then it started with my left hip.  It got to the point where I would almost double over.  I went to my PCP who at first thought I was depressed (HA! - not the case - I was just in pain).  Then he prescribed a colonoscopy.  That came back normal.  So I thought I would see my gyne.   He advised me then that I did have severe endometriosis (which up until that time I didn't know).  He wanted to do a laproscopy.   The laproscopy came back as severe endometriosis (no cancer) and that I did have a lot of scarring.  He wanted to do a hysterectomy but first wanted to put me on Lupron for six months to help "soften" the lesions so that it would make surgery somewhat a little easier.   I asked about having scans and he said endometriosis would not show up.   I was disappointed to have to wait 6 months for surgery as I was in so much pain.  He assured me that I didn't have cancer.  At this time I was 44 going on 45.

    I had the surgery in September of 2005.  He indicated he had his doctor friend assist him who was a gyne/oncologist.  Not because he though I had cancer, but in case they knicked something as he was very good at fixing those things.   The surgery went well except for a knicked bladder which required me to have a Foley in for a little over a week.  I went home and when I went back to have the Foley removed, I met with my doctor's assistant as he was on vacation who informed me that although the surgery went well, they found cancer and that I would need to go see a gyne oncologist.  I met with this oncologist and then had surgery 1 month later for staging.

    Although my CA-125 was not an indicator and all other tests were normal, they found cancer in my Left ovary, uterus and cervix.   There was some talk as to where the cancer originated from but they couldn't determine.   They though it could be MMMT but decided it was Stage 3a Grade 2 endometrial adenocarcinoma.

    I had gone over a year and a half feeling unwell.

    I recently just had the same thing happen.  Too long of a story.  Similar - different doctor.   

    I hope the best for you and this is nothing.   Before any of this happened to me, I knew a older woman who was going though all the symptoms I was having and she ended up having ovarian cancer, so it concerned me.  If you have any questions, please ask me!  By the way my original diagnosis was 13 years ago!

    Kathy

     

    PS  About biopsies:  They are a hit or miss.   I had a positive one (for a recurrence) and when they removed everything at surgery it was negative.  But then most of my other biopsies where negative until my most recent one.  A tumor may not be completely cancerous so a biopsy isn't 100%.