Fallopian tube girl on your uterine page



  • BluebirdOne
    BluebirdOne Member Posts: 653 Member
    edited October 2020 #62

    Denise, that's awful!

    So sorry to hear you were treated like that!  I guess my experience was atypical.  I had my ultrasound with my GYN early one week, had my D&C/hysteroscopy that Friday, was scheduled a week later with the gyn oncologist, and had my surgery the following week.   Less than three weeks from ultrasound to hysterectomy.


    Thanks, it was the worst part of the

    entire process so far. I know that many of us have to struggle with getting scehduled and find competent docs. The silver lining is that I received the best standard of care in the end and was dx a 1a. But I cannot overstate how awful those weeks were for me and my family and then learning that it was UPSC. I have so much empathy for everyone because I know what others are going through. 


  • BluebirdOne
    BluebirdOne Member Posts: 653 Member
    edited October 2020 #63
    Primavera said:

    That's so awful

    So sorry that happened to you.

    I never made any appointments. For both cancers, I've been sent from one doctor to another. My gynecologist picked up the phone right in front of me and called the gyno-oncologist and sent me downstairs with an order to get pre-operative scans that same day. After the operation, the gyno-oncologist sent me to the radiologist and the geneticist, and so on.

    It's been the same with the breast cancer. After the first mammogram, appointments were made for me. I was just called for a choice of the time, not even for a choice of day. Everything from extra biopsies to MRIs have been scheduled for me. I was upset that everything was happening so fast and the appointments were one after the other, but maybe that was better. For a few days I felt like I lived at that building! When I was done with all that I kind of was pleased at the routine of chemo treatments.

    I think I read once that you went to a hotel near your cancer center. My cancer center is 15 min. away, but I thought of you and a hotel and I actually looked for a hotel at walking distance of the center, when I thought about you, but there wasn't any.


    My incompetent gyne did make a call to his buddy the GO, immediately after he realized that his vacation allowed my UPSC 5 more weeks to grow.  I got in to see the GO within a few days time, however, when trying to get scheduled with the GO for my actual surgery they would not give me a date. Said they would call me. Two more weeks went by before they called me back to schedule the surgery in another two weeks! Ha! By this time I already was back home after having my surgery at Mayo. With Mayo, I made one phone call, explained my situation, was scheduled for surgery as soon as I could get there and their scheduling office has done all of the appointments for my treatment ever since. I was so relieved. Yes, we stay either in a hotel or an Airbnb when I had to be there for a week of treatments and we bring our little dog who is very old. It is expensive and inconvenient, but I know I am getting a lot of eyes looking at me who are some of the best in their fields. They also were my 2nd opinion regarding the pathology, and plan of care.  I also participated in three studies, which I hope will advance care for our cancer. One is the use of a tampon to collect cells (I had this just before the surgery) to determine if there is cancer which is still ongoing and very promising. The other two were for surgical techniques. Very interesting and gratifying. I never regretted my decision.


  • thatblondegirl
    thatblondegirl Member Posts: 381 Member
    edited November 2020 #64
    Finally, the final pathology.....

    I saw my GO yesterday & finally got the final "scoop." 
    1) NO new bad news! The final 2 weeks of waiting my pathology was with CancerTypeID in CA. It doesn't make sense, so simultaneously reveals both worthless & important information. Worthless: Reported that with 88% probability my slides from second surgery reveal origin as "germ cell" cancer. Well....so that's impossible since the only germ cells in the female anatomy are ovaries & both of mine were completely cancer free. Important: 95% probability that it's NOT one of 30+ cancers in an alphabetical list of about every cancer you can think of! So, my "tumor origin" will always remain a mystery! He wants to do genetic testing for BRCA to see if he wants to give me a drug for life post-chemo to prevent recurrences...PARP. I'm not too concerned because there's no breast or gynecological cancers in my family except for one paternal aunt who got breast cancer at age 80 and lived to be 92...I'm just saying it's probably unlikely I carry that gene!

    2) I'm still Stage 2, and Grade is 2-3.

    3) As soon as I can get bloodwork, insurance approval, and a port installed I CAN BEGIN MY CHEMOTHERAPY!!! Probably next week! Paxlitaxel & Carboplatin for 6 cycles.

    I said I refuse to have GA for port.....had that 3 times in 3 months & don't want again! He said they'll do local & twilight & I agreed to that! I don't want a port, but I'm a "hard stick," and so I knew there was really no way around it.

    I've contacted the "Wishcaps" people in Houston, and even though I'm almost 75 miles from downtown Houston I'm in their delivery area. The day before treatment they deliver the kit to my front door ready to go....caps in freezer with the dry ice. I'm going to try it! I'll let y'all know how it goes!

    It feels great that I seem to be finally getting somewhere!

    Thx for all your support ladies!

    XO, Alicia

  • ConnieSW
    ConnieSW Member Posts: 1,674 Member
    edited November 2020 #65

    What a relief to be finally getting somewhere!  I wasn't crazy about having a port in the beginning but it became my buddy.