Feeling doomed...again

Tethys41 said:

Scans

Dear mrsbralylovesmrbraly,

The absolute best test for ovarian cancer is a PET scan, which identifies excessively active cells.  These images are overlain on a CT scan, so that their location can be determined.  But often oncologists don't order a PET scan and rely on a CT scan with contrast to identify ovarian cancer.  It's not likely that a CT scan would miss it, unless the tumor was exceptionally small, but anything is possible.   Do you want to share what is going on?

Thank you for your response Tethys41.  I'm a 22 month Triple Negative breast cancer survivor that started having a strange pulling sensation in my groin and significant constipation in May 2016.  Went to PCP who did an Xray of my hip and pelvis and order a colonoscopy and CT.  Xray and CT clear.  Sigmoidoscopy in June was clear.  The pain and constipation increase through the month until I called my oncologist in September in tears.  She ordered another CT and a full colonoscopy and sent me to an OB/Gyn for an ultrasound.  Colonoscopy clear, CT clear and ultrasound showed normal.  I was put on Linzess, lactulose and a host of other drugs and nothing worked.  I was resorting to enemas and Ducolax just to achieve movement.  GI doctor finally put me on a regime that worked for a while of Miralax in the morning, Senna S at lunch and prune juice at night.  This worked for several months.  Then in November, my ankle started swelling as well as my abdomen.  I eat very healthy, walk everyday and workout with a trainer once a week to regain my muscle lost during chemo.  The pain, constipation, swelling of ankle (and now leg) and abdomen has all gotten worse.  I called my oncologist again in tears.  I had a full MRI and CT scan, she was actually looking for bone mets on the MRI and not sure about the CT.  Sorry so long, but I've been dealing with this for a long time.  I have every single symptom of ovarian cancer.  The pelvic pain was first but we just thought it was due to chemo-induced menopause, pain, swollen abdomen, ( I can't wear any of my pants AT ALL) swollen leg.  I now can't hardly eat because I feel like I'm already full.  I'm having another transvaginal UT on Thursday and hoping for answers.  I have no doubt there is something very wrong with me but for some reason it's being missed. 

Tethys41 said:

CA-125?

Oh no, I'm so sorry you are suffering so.  This sounds miserable.  I can feel your frustration. 

Has anyone run a CA-125 blood test on you?  That is the tumor marker for ovarian cancer.  One of your doctors sure ought to be willing to order this test, considering your symptoms.

Also, have you been tested for the BRCA mutation?  If you have it, it presdisposes you to both breast and ovarian cancer, and those who have it, who do develop breast cancer, typically end up with triple negative breast cancer. 

I hope your doctors find out what is going on.  If not, may I suggest you find a functional medicine doctor or naturopath?  I have found, when I have a chronic problem that conventional medical doctors can't diagnosis, I have far better results if I consult my naturopath.  They address conditions at the cause and work to make you healthier, rather than prescribing drugs to cover up your symptoms. 

Good luck.  Let us know how your ultrasound goes. 

I'm going to request a CA-125 on Thursday as well.  I was tested for the BRCA I and II when I was diagnosed with TN and I was negative for both.  I requested a full gene panel a couple of weeks ago to see if there is something else like Lynch syndrome, etc.  I have considered naturopath, because yes, after being in treatment for breast cancer for over a year, I figured out how the health system works.  Doctors are not looking for a cure, they just treat the symptoms.  But I really think something more sinIster is going on here since my symptoms keep getting worse and worse.  Thank you for the suggestion Tethys41.