Going out of my mind....

chaase

Hi all, 

I need a little assistance, reassurance etc

The story so far:
2016: 
April -
Sweating, neck stiffness & throbbing, increasing lower back pain.
May -
Began feeling unwell - Dizziness and Nausea.
June -
Loss of balance, High BP, Persistent Migraines, loss of appetite, palpitations.
July -
MRI & CT of Brain - NED,
Referral to Neurologist - NED.
September -
BT - POSITIVE PNMA2 (Ma2/Ta) IgG
Chest wall pain, fatigue, hair loss, weight gain, abdominal bloating, abdominal tenderness, rectal bleeding, constipation and diarrhea, hip throbbing & leg pain.
October - 
PET Scan & Ultrasound - Suspect hot left ovary - Referral to Gynecology Oncologist & Colorectal Surgeon.
November -
Colonoscopy - NED, 
Laparoscopy (Gyno/Onco) - Left Oophhorectomy - NED, Peritoneal cytology- POSITIVE Metastatic Adenocarcinoma. Revised to highly suspicious due to minimal number of cells (<60) to confirm Dx. 
December -
Endoscopic Ultrasound - Esophageal ulcer - NED, 
Post-op appointment with Gyno/onco Dx of "Yes you have Cancer, we dont know where or what type so I am sending you to a GI Surgeon." <-- Starting to think he jumped the gun... 
Contrast CT - NED - 4cm right ovarian cyst,
Diagnostic Laparoscopy - Mesenteric fat lump removed - No results as yet, Peritoneal cytology - NEGATIVE - No malignant cells seen.
 

So now with all of the NED's and the Negative 2nd cytology, I am at a standstill and scared shirtless that the Dr's have initially given me a false positive or now I am likely to be given me a false negative when there really is something there. 

I know my Dr is the best bet for information, I know I can't be given a Dx but I just need advice on what to do now, what tests do I ask for... 

 

 

Thoughts?? 

abrub

Get your slides sent to an expert cancer center.

I had a metastatic mucinous adenocarcinoma tumor on my ovary - was from Appendix.  That is often missed.  You need a specialty center.  I go to Sloan Kettering.  There are excellent cancer centers scattered around the use.  Of note, my dx was almost 10 years ago, and I'm doing very well.

chaase

Saw the GP - no clear answer

Saw the GP - no clear answer = all of my results & tests are going to the medical panel. I have also had more bloods and have to do a 24hr urine analysis and a 3 day urine cytology. 

Thank you for your reply Abrub, I forgot to mention I am from Australia Hopefully I get some answers soon. 

Additional bloods done today include CA125-3, CA19-9, CA27-29, CEA, bHCG, TSH LFT, FBC/CBC, & Iron studies.

I will keep you updated

abrub

Good luck, Chaase

I hope that they can clarify this for you.

Alice

chaase

Bloods are back...

Bloods are back

CA125 is elevated - in November it was 9, now is 52 (Refererence range < 35)
TSH came back rather low at .33 (Refererence range 0.5 - 3.5)
WCC is slightly elevated
& everything else is within reference ranges. - With all CA level tested rising slightly in 6 weeks

abrub

chaase said:

Bloods are back...

Bloods are back

CA125 is elevated - in November it was 9, now is 52 (Refererence range < 35)
TSH came back rather low at .33 (Refererence range 0.5 - 3.5)
WCC is slightly elevated
& everything else is within reference ranges. - With all CA level tested rising slightly in 6 weeks

Hang in there

They'll repeat the bloods.  Counts can jump for lots of reasons.  All of your information needs to be reviewed to see what the next step is, if any.

Try to breathe (easier said than done.)

chaase

Very much so!I have decided

Very much so!
I have decided that I will worry once they tell me i need treatment!