Need advice/help on whether to keep pushing for definitive diagnosis

carrienjason777

Hi! Ive  been experiencing issues with my CEA and no one can help me so I hope someone can here! 

 

My CEA was first checked 2 and 1/2 years ago with some problems I was presenting, the Dr thought I might have uterine or ovarian cancer so she checked it. The first time was 15, and over this time period it has fluctuated from 12.1 to 18.5 until the last 3 months, it has been from 17 to 21.3 ng (or 170-213 ug) 

 An ovary removal 2 years ago showed no cancer but the other was never checked and I constantly have complex cysts occurring on the remaining ovary, but my gyne refuses to check my other ovary because of my emphysema she doesn't want me under anesthesia). I have also developed anemia in this time frame and see an oncologist but he thinks that the CEA could possibly be from emphysema but my lung Dr says no, not with it that high but my oncologist won't do anything still further. I was also checked at first for colon and intestinal problems (due to my father having colon cancer and my high CEA) but they were negative in 2015. IM at my wits end not knowing if I should find other Dr's that would seek until they have an answer is to why CEA is high, or should I just let it go? IM concerned due to symptoms I keep having off and on also: extreme weight loss (was 126-129 and now IM holding at 106-108 but have lost as much as down to 100) severe bone and joint pain (different from arthritic joints), low abdominal pain, nausea, headaches, frequent urination, low or high values on my cbc ( high monocytes, low platelets, etc) and other things. If anyone could offer some advice then please cuz IM unsure of what to do anymore! My husband worries cuz my grandpa died of multiple myeloma and my father currently has colon cancer and my pain management Dr (who graduated from Harvard) said that CEA is too high for my health conditions and due to the fact that it has stayed high for so long (was only at normal levels ONCE) , he says it definitely needs further and definitive investigation.  What should I do? Thanks so much for your help and allowing me to be a part of the group!

abrub

Please get reviewed by a specialty cancer center

My appendix cancer was originally found on my ovary, and might have shown on a CEA had it been done.  However, my CA19-9 and CA125 were both normal; we thought just an ovarian cyst when I had my hysterectomy.  Everyone was shocked when it turned out to be cancer.  Also important to note:  while appendix cancer is often found on an ovary, it is often mistaken for ovarian cancer, and women are treated with the chemo for ovarian cancer, which is useless against appendix cancer.  

I go to Memorial Sloan Kettering Cancer Center in NYC.  There are superb cancer centers throughout the country.  I recommend that you get a second opinion from one, and learn once and for all what your diagnosis is or isn't.

LorettaMarshall

Carrie~I second "Abrub's" advice~U need a 2nd opinion!

My dear Carrie:

You ask, “What should I do?”  I say, “You know your own body.”  Also some doctors know more than other doctors, so I would take a clue from your Lung doctor and get a SECOND OPINION.  Also is your gynecologist a gynecological oncologist.  They have more intense training and I can’t believe that one would not conduct further testing on you.  I would be concerned about the weight loss as well.  Things could have changed since 2015.  That’s how things happen.  One day we’re well—next day we find we have CANCER.  I’m not sure of anything except this—you NEED to find a doctor that takes you seriously.  You’re the one that’s hurting.  Since your Lung doctor is concerned, can he check with his cohorts, and find you someone that will take you seriously.  Smoking seems to be listed as a factor.  Are you a smoker?  How might that figure into the CEA level?  Your lung doctor should know that, should he not?

I think you, of all people, should check out the references below having to do with getting a SECOND opinion.  First opinions are often WRONG!  You must not just ignore it.  Your body is trying to tell you something.  That’s the best advice I can offer.

Incidentally, be sure you ask for a copy of all your previous test results, and take them with you when you find a real specialist.  Sorry I can’t be of more help.  But I can say, “Get on with it and don’t give up now.”

Loretta

________________________________________________

1.  https://www.studyfinds.org/second-opinion-doctor-diagnosis-study/

“SECOND OPINION FROM DOCTOR NETS DIFFERENT DIAGNOSIS 88% OF TIME, Study Finds

8Apr - by Daniel Steingold -  232 - In Health Studies

ROCHESTER, Minn. — When it comes to treating a serious illness, two brains are better than one. A new study finds that nearly 9 in 10 people who go for a second opinion after seeing a doctor are likely to leave with a refined or new diagnosis from what they were first told. 

Researchers at the Mayo Clinic examined 286 patient records of individuals who had decided to consult a second opinion, hoping to determine whether being referred to a second specialist impacted one’s likelihood of receiving an accurate diagnosis.

The study, conducted using records of patients referred to the Mayo Clinic’s General Internal Medicine Division over a two-year period, ultimately found that when consulting a second opinion, the physician only confirmed the original diagnosis 12 percent of the time.

A new study finds that 88% of people who go for a second opinion after seeing a doctor wind up receiving a refined or new diagnosis.

Among those with updated diagnoses, 66% received a refined or redefined diagnosis, while 21% were diagnosed with something completely different than what their first physician concluded.

“Effective and efficient treatment depends on the right diagnosis,” says lead researcher Dr. James Naessens in a Mayo news release. “Knowing that more than 1 out of every 5 referral patients may be completely [and] incorrectly diagnosed is troubling ─ not only because of the safety risks for these patients prior to correct diagnosis, but also because of the patients we a_s_s_ume are not being referred at all…”

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2. https://qz.com/949860/get-a-second-opinion-doctors-usually-arent-right-the-first-time/

“…Misdiagnosing a patient can sometimes be fatal, but how often is unclear. Last year, a controversial study from Johns Hopkins University said that medical error—which includes mistakes in diagnosis—are the third-leading cause of death in hospitals behind cancer and cardiovascular diseases in the US. As ProPublica notes, doctors don’t list medical errors on death certificates, so counting the actual number of deaths presents its own set of challenges. That said, the National Academies of Medicine estimates (pdf) that diagnostic errors lead to up to 10% of all patient deaths, and up to 17% of all hospital complications…”

__________________________________________

3.  http://www.webmd.com/cancer/carcinoembryonic-antigen-cea#1

“Carcinoembryonic Antigen (CEA)… The carcinoembryonic antigen (CEA) test measures the amount of this protein that may appear in the blood of some people who have certain kinds of cancers, especially cancer of the large intestine (colon and rectal cancer). It may also be present in people with cancer of the pancreas, breast, ovary, or lung.

CEA is normally produced during the development of a fetus. The production of CEA stops before birth, and it usually is not present in the blood of healthy adults…

The carcinoembryonic antigen (CEA) test measures the amount of this protein that may appear in the blood of some people who have certain kinds of cancers, especially cancer of the large intestine (colon and rectal cancer). It may also be present in people with cancer of the pancreas, breast, ovary, or lung…

What Affects the Test

Heavy smoking affects the test results.

What To Think About

• The CEA blood test is not reliable for diagnosing cancer or as a screening test for early detection of cancer.
• CEA testing is a reliable test for recurrent colon cancer if the original cancer produced this protein before treatment.
• Most types of cancer do not produce a high CEA. Having a normal CEA level does not mean that you do not have cancer.

• CEA levels usually return to near-normal levels within 6 weeks of starting treatment if cancer treatment is successful.
• Measuring the amount of CEA in other body fluids, such as abdominal fluid (peritoneal fluid) or the fluid around the brain and spinal cord(cerebrospinal fluid, or CSF), can determine whether cancer has spread to that part of the body.
• Other diseases, such as COPD, cirrhosis, and Crohn's disease, may also raise CEA blood levels.

• CEA levels are usually higher in smokers than in people who do not smoke.”
• _______________________End of references________________

carrienjason777

Update and thank you

Thank you for your comments and sharing your wisdom. IM still not sure Ive found THE answer yet, but I im on the way to it because I have found more answers, and some of them are starting to make SOME sense of some of my symptoms and stuff. So I greatly appreciate your encouragement to see more drs and keep on pushing for answers, cuz I had been doing it for a while and was getting discouraged with the results and even with them telling me that "it just must be ______"  or "_______" whatever made sense to that Dr on that day to fill in the blank with rather than to keep searching. 

After finding out my daughter had a new dr who run out-of-the-ordinary thyroid tests to check her for thyroid disease (which I had done periodically off and on throughout her life as it runs in her fathers family in EACH of his 8 siblings, his parents,  and my other daughter) her tests now showed positive for a hypothyroid issue, autoimmune disorder,  AND a very large nodule on her thyroid! (And I had her checked her whole life and it was missed!!! but they only checked TSH just like with me)  So I went to this Dr and she checked me too and found hypopituitarism (no thyroid issues) and MRI that used to show a small arachnoid cySt, now shows a doubled in size neuroglial cyst, and its symptomatic too. So we checked hormones and my pituitary is overproducing some hormones(LH and FSH so far but all tests aren't in yet) and is deficient some(free t4 so far but normal TSH ). So I went to my gynecologist yesterday to double check and make sure there wasn't any possibility of early menopause (due to high FSH and LH) and she said that's rare, I don't have any other signs and symptoms for it. So its all should be coming from pituitary she said. I go to Neurosurgeon on Tuesday this week and find out what's going on with that cyst and see if Hes gonna do a more in depth scan and/or tests of pituitary to see if its really a cyst cuz I also found clinical research that says glial tumors cause elevated CEA! 

So if yall have anything you think I should ask the Neurosurgeon about or talk to him about on Tuesday, PLEASE let me know! Thanks foe all your help and I'll keep you posted!

carrienjason777

Update

Have more symptoms and more ongoing problems and CEA levels continue to rise and fall between 15.3 to 20.7. All drs agree that something is wrong yet insurance won't pay for PET scan which oncologist thinks is best way to discover CEA problem and all other specialists think that upcoming Feb 5th visit to Endocrinologist is necessary before they can do anything further, as they feel now that a lot of my problems are at least connected to the pituitary issue. (A lot of the gynecological problems are caused at least in part from the overproduction of the female hormones in the pituitary so she can't really rule out too many other things till that is taken care of first and I am also experiencing kidney/bladder issues due to under/ over production of hormones so that needs to be addressed so the urologist can see what's actually issues due to the pituitary or the kidney/bladder. Etc. So until after I see the Endocrinologist, I won't get any new answers. Ive also been having low blood sugar,  high monocytes (which oncologist thinks is unusual), Ive been having bone pain and a bone scan showed that I am losing bone mass, having vision problems and experiencing hearing loss and some slight memory loss. Ive also been having some issues with reflux and stomach pain and I keep forgetting to tell my Dr about it but having this weird "vibrating" in my legs,  like when a cell phone is going off. Thats what I thought it was every time it happens, a cell phone going off. But I can't never remember all my new issues to tell my Dr due to my memory. If anyone has any answers or knows anything about my problems then PLEASE let me know! Thanks!

abrub

With elevated CEA - check for appendix cancer

which is often mistaken for ovarian cancer.  (Mine was found on my ovary.)  

Tethys41

Symptoms

Carrie,

You sure have a lot going on.  I can't tell you a lot.  I do know that I was having weird vision issues, when I was diagnosed, and my eye doctor told me that women with ovarian cancer produce an antibody that can affect vision.  If I was in your shoes, I would find a functional medicine doctor or naturopath.  They work to find out the origin of symptoms and address them holistically.  Your hormone issues are something they can definitely look at and work on.  I hope your condition is something minor, but these types of specialists can help you identify the cause and support your body so that things can be resolved.

Good luck.

carrienjason777

Update

Ok. Just seen the Endocrinologist and finished a few tests. She found that my FSH , LH, and prolaction levels were all seriously elevated. My free t3 and free t4 levels were low and my acth was borderline line low. She also found a microadenoma on my pituitary and I go back to her on April 5th to find out what she plans on doing and what she makes of it all.

A visit to my oncologist this past week yielded that he was concerned about the constant high monocytes as well as some of the other things that have been showing up for the past year so Hes doing a bone marrow test to rule out aand/or test for things, as well as sending me to a rheumatologists to check for autoimmune disorders . cuz in the last month alone I have gotten a lot worse, have lost another 10lbs, stay nauseous so much that I have an even harder time eating, and have been having more symptoms. So will let you know more as I find out more. If anyone has any suggestions that I need to ask the Dr please let me know.  Still no definite answers on CEA thoufh

carrienjason777

Tethys41 said:

Symptoms

Carrie,

You sure have a lot going on.  I can't tell you a lot.  I do know that I was having weird vision issues, when I was diagnosed, and my eye doctor told me that women with ovarian cancer produce an antibody that can affect vision.  If I was in your shoes, I would find a functional medicine doctor or naturopath.  They work to find out the origin of symptoms and address them holistically.  Your hormone issues are something they can definitely look at and work on.  I hope your condition is something minor, but these types of specialists can help you identify the cause and support your body so that things can be resolved.

Good luck.

Thanks for your reply! 

Thanks for your reply!  Amazingly, all of this stuff started with the ovary and my gyne at the time removed the one ovary that kept giving me the worst problems (complex ovarian cysts) but didn't even bother to biopsy the other ovary while she had me on the table which everyone thought was odd because IM I high risk for surgery due to the emphysema (not good for me to be under anesthesia) .  So the other ovary has since been giving me complex cysts as well, but with all my other problems,  the drs have felt that should be the least of my worries and have done nothing else regarding that.

Ive never heard of the kind of drs that you're talking about that I need to go see, are they regular mds or holistic drs? 

ThaInks for the info and sorry about typos but for some reason my phone keeps adding letters and sometimes whole words and half sentences for some reason. So my apologies for that. Have a great day.

carrienjason777

More test results...an

More test results...an abdominal/pelvic CT I had done at the Er (due to severe stomach pains and being unable to eat) shows that I have an enlarged spleen (splenomegaly) , the right lobe of my liver is slightly enlarged, and that there is mild dilatation of both the intra/extra hepatic bilairy ducts and the pancreatic ducts, in which they recommend follow up and an ERCP .  I already have an upcoming GI appt so ill find out more then.

Tethys41

Tests

Wow, Carrie, what a mess.  I hope you get some answers soon.  I think you definitely need to keep testing.  But I have found, that when doctors just can't come up with a diagnosis, other options can help.  Maybe some acupuncture or a visit with a functional medicine doctor or naturopath.  I have had some weird things crop up over the years, which were easy fixes in the holistic community, but led to more and more invasive tests in the conventional medical community before I turned to other options.  Last year, for example. I thought I was having gall bladder issues.  I had an ultrasound, which was negative.  The pain was not intense, but was chroic and lasted for months.  It really dragged me down.  I went to my primary care doctor and he recommended an endoscopy.  I had that and it was also negative.  My doctor was going to recommend some other test to measure the fucntion of my gall bladder.  In the meantime, I went to a chiropractor and it turned out I had a rib out of place.  Wish I had gone to see her a lot earlier.  Good luck .