Returning to the discussion board…feeling frustrated with my doctors!

It's been quite a few months since I've posted anything on the discussion...or even looked at the board!  I stopped reading posts because some got a little depressing and some were just too overwhelming...and then I was just so disillusioned by my doctor that I kind of went into a "denial" phase!  In January 2012 I was diagnosed with uterine and cervical cancer.  I went to one of the top treatment centers in the US, thinking I was doing the right thing.  At that point, I researched many things about my condition and felt that I was very "self-informed".  I did ask the doctor many questions, being new to this whole cancer thing!  She answered some of my questions, but referred me to the center's website for more info.  In March 2012 I had a radical hysterectomy, five weeks of external radiation, and three weeks of internal radiation.  I was able to tolerate the treatments fairly well, with just diareahha.  I did not know the "standard protocol" and put all my faith in my doctor.  

Fast forward to the summer of 2014.  My stomach was still bothering me and I still had diarrhea.  I thought it couldn't still be due to the radiation, so I went to my mother's GP.  He thought I might have gallstones and sent me for an abdominal CT.  He could see the bottom of my lungs in my scans, which showed some tumors.  He sent me for a full chest scan which revealed 16 large, bilateral tumors...inoperable.  That's when I first went on this discussion board.  I learned that the protocol for post-treatment is scans every three months.  Long story, short, I did not have that!  I called my original surgeon who said that I had many scans, but when we checked, I only had one scan, and that was in September 2012.  The next scan, not given by this hospital, was eleven months later!  And it showed I had 16 inoperable tumors!  When I was finally able to look at the scan results from September 2012, it showed that I already had a tumor, but the doctor did nothing about it!!

Forward to now...I had six rounds of chemo - taxol and carboplat - starting in November.  After the second round the doctor wanted to stop the taxol because I was developing neuropathy.  I had to fight to keep the taxol and after six treatments, the number of tumors went down to 12 in January.  It was a constant battle with the doctor every visit to keep the taxol, which I did, and after six treatments in March, I was down to 6 tumors!!  At that point she said she was discontinuing the taxol, against my wishes, and I had two more treatments of Carbo.  After my most recent scan, two of the tumors started growing again!  After the 8th round of chemo, she said the IV chemo has done all it can and started me on what she called an "oral chemo".  When I filled the script, the pharmacist told me it was a hormone, not an oral chemo.  

After my 5th treatment, they drew blood to see if I were eligible for a genetic study.  When I went back after the 8th tx, she said, "We have good news!"  I'm thinking, "Yes, my cancer is gone!"  She said, "no, two of the tumors have grown, but you do have seven mutations in your tumors!"  I'm thinking, "How the heck is this good news?!?!"  She said it makes me eligible for the study.  So I said, "Great! When do we start?"  Her response was "When you get worse!"  I have to get worse before they with start the experimental treatment...and then I may only get the placebo!  Then I started hearing stories from so many people that this hospital is a research hospital...they are only interested in research...maybe they stopped your chemo because they want you to get worse so you can be in the study...

So...now I am neurotic, confused, and overwhelmed!  Then I just read some postings here about "maybe the doctors are not telling us everything..."

Oh, and a few other things from the discussion board...I also have the swelling of the feet and ankles!  Moving up my calves.  Had to buy the next size up in shoes because my right foot is so swollen.  I asked the doctor, she did not seem too concerned.  And the only good thing I thought would happen with the cancer is that I would lose weight...did not happen!  Just the opposite!  I have put on over 25 pounds since I started chemo in November and I am only eating a little each day!  Not because of nausea, but because I have no appetite and I am not hungry.  The doctor said she "was not concerned" with this either.  She said it might be because I am not as active as I was.  I am still active, though!  

Stressed, frustrated, and confused...and looking for answers!