Reoccurrence to stomache and pelvis

Carpit
Carpit Member Posts: 19
in Uterine/Endometrial Cancer #1

Hello lovely ladies - I am in dire need of your opinions. I was diagnosed with stage 1b uterine cancer and surgery oin Feb 2017. I declined chemo hoping to beat the odds. Had pet scan on March 31, 2017 and all was good. Had checkup on May 31, 2017 and all was good. Passed out on Father's day June 18th and fortunately was caught before I hit the ground.  We had taken my husband out for dinner and I decided to leave due to feeling faint. Someone had called an ambulance before he came around with the car and so he followed me to the hospital. I was also having severe pain in my abdomen. This hospital, that I initially wouldn't recommend to anyone, ran multiple test including Ct scans. The Ct scan revealed 1 large mass on the right side of my abdomen and several others. I knew right away that the cance had returned. ( in only 4 short months) . I immediately went to my oncologist at MD Anderson and was able to see him today. Without seeing the pathology report and only the CT Scan he confirmred my worst fears. He had given me a clean bill of health on May 31st. By the way, he was not the Dr that performed the surgery.  He was my second opinion doctor and I wanted to be treated at MD Anderson in case the cancer returned. I promised my husband that I would stay off this site because it kept me in tears. Some of joy and some of sorrow. Has anyone had and beat a recurrence to the abdominal area? 

Any response will be greatly appreciated

 

Best Regards and Many Thanks

 

 

 

 

 

 

 

 

Comments

  • derMaus
    derMaus Member Posts: 558 Member
    #2
    Hello Carpit, there are MANY

    Hello Carpit, there are MANY ladies here who've beaten the odds, several times over. I'm sure others will be along shortly to share their own stories, but I wanted to let you know I can definitely feel for you. Like you, my recurrence was very quick - immediately after chemo (but before starting radiation), which was devastating. Mine's in the retroperitoneal lymph nodes, which is the same general area - as is yours, from what I read - which is more positive in that it's considered a localized recurrence.  Others here have had worse experiences, and faster, than either you or I - and they're doing well with their current treatment so please do take hope from that. I do have one suggestion: if they do a biopsy, which seems likely at this point, ask about getting a live tumor assay done at the same time. I've posted about those before on this site, and really REALLY wish I'd know to ask for one up front. If I'd had that, I would have had better information to make an informed decision rather than accepting the standard six rounds of taxol/carboplatin, which was either partially or totally unsuccessful, depending on who you talk to. Currently I'm having radiation with a Cisplatin 'boost' and tolerating it quite well. Hang in there, you have plenty to be optimistic about. 

  • Carpit
    Carpit Member Posts: 19
    #3
    derMaus said:

    Hello Carpit, there are MANY

    Hello Carpit, there are MANY ladies here who've beaten the odds, several times over. I'm sure others will be along shortly to share their own stories, but I wanted to let you know I can definitely feel for you. Like you, my recurrence was very quick - immediately after chemo (but before starting radiation), which was devastating. Mine's in the retroperitoneal lymph nodes, which is the same general area - as is yours, from what I read - which is more positive in that it's considered a localized recurrence.  Others here have had worse experiences, and faster, than either you or I - and they're doing well with their current treatment so please do take hope from that. I do have one suggestion: if they do a biopsy, which seems likely at this point, ask about getting a live tumor assay done at the same time. I've posted about those before on this site, and really REALLY wish I'd know to ask for one up front. If I'd had that, I would have had better information to make an informed decision rather than accepting the standard six rounds of taxol/carboplatin, which was either partially or totally unsuccessful, depending on who you talk to. Currently I'm having radiation with a Cisplatin 'boost' and tolerating it quite well. Hang in there, you have plenty to be optimistic about. 

    Thanks derMaus for your quick

    Thanks derMaus for your quick response. I will definitely ask about the live tumor assay. By the way; nice picture, very radiating smile. Kinda soothing to my tears. I'm going to fight this battle with ever fiber of my being. I have to admit that I am very scared of the chemo and hope I also tolerate it well

    Kind Regards

     

     

  • derMaus
    derMaus Member Posts: 558 Member
    #4
    I was scared my first time,

    I was scared my first time, too, but it was a big letdown: they give you a bunch of 'buffer' drugs first, then start the chemo *very* slowly to see if you have a reaction. I had a very slight one -  a little breathlessness -  so they stopped it, gave me more buffer drugs, and restarted it at a slower rate. I never had any problems after that. They'll also (probably) give you Benedryl, and you can ask for a Xanax or similar. Between the two, I usually managed to fade into a nice fog for the entire event, not really coming up until about an hour before it was done. I had a fair bit of nausea during the last two rounds, but that was helped when I finally started taking probiotics. If only I'd followed advice and taken them at first I probably could have lessened the effects earlier. I've learned a lot about supplements from our members and my own research, and am currently on a regimen that's prescribed by a naturopath and endorsed by my oncologist. I think MD Anderson offers similar services. Be sure to let us know what you find out!

     

  • Carpit
    Carpit Member Posts: 19
    #5
    derMaus said:

    I was scared my first time,

    I was scared my first time, too, but it was a big letdown: they give you a bunch of 'buffer' drugs first, then start the chemo *very* slowly to see if you have a reaction. I had a very slight one -  a little breathlessness -  so they stopped it, gave me more buffer drugs, and restarted it at a slower rate. I never had any problems after that. They'll also (probably) give you Benedryl, and you can ask for a Xanax or similar. Between the two, I usually managed to fade into a nice fog for the entire event, not really coming up until about an hour before it was done. I had a fair bit of nausea during the last two rounds, but that was helped when I finally started taking probiotics. If only I'd followed advice and taken them at first I probably could have lessened the effects earlier. I've learned a lot about supplements from our members and my own research, and am currently on a regimen that's prescribed by a naturopath and endorsed by my oncologist. I think MD Anderson offers similar services. Be sure to let us know what you find out!

     

    Thanks again for the valuable

    Thanks again for the valuable information. My first consultation at MD Anderson is June 27th. So far, my family, and I know that they are all panicking, are overwhelming me with different supplements and also CBD oil from the health food store. I'm a little reluctant to take anything until I do my own research. However, the advice from someone who has experienced it is priceless. What type of cancer did u have if you don't mind me asking? Mine is Uterine Sarcoma

  • derMaus
    derMaus Member Posts: 558 Member
    edited June 2017 #6
    I had Grade 3, Stage IIIb

    I had Grade 3, Stage IIIb undifferentiated endometrial carcinoma. Click on my name and it'll take you to the 'about me' page w/all the grisly details Wink

  • Carpit
    Carpit Member Posts: 19
    #7
    After checking out your page,

    After checking out your page, I do believe I will update mine. Have a wonderful evening

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #8
    So sorry

    So sorry to hear that that you had to join this club.  This is a good place for advice, information, and comfort.  I was diagnosed with Serous Papillary Endometrial Andocarcinoma in Aug. 2012. It recurred 7 months after frontline treatment.  I have been on a variety of treatment ever since.  I have had many more good days than bad.  A lot of chemo and radiation is not fun, but it is doable.  It has kept me around to welcome and cuddle four great grand kids.  My husband and I have been able to travel between treatments.  I just finished planting my flowers for the summer.  I am on Immunotherapy right now, Keytruda, and am having some success with it.  It has given me a year that I didn't think I would have.  There is always hope .

    Hugs md prayers, Lou Ann

  • derMaus
    derMaus Member Posts: 558 Member
    #9
    Lou Ann M said:

    So sorry

    So sorry to hear that that you had to join this club.  This is a good place for advice, information, and comfort.  I was diagnosed with Serous Papillary Endometrial Andocarcinoma in Aug. 2012. It recurred 7 months after frontline treatment.  I have been on a variety of treatment ever since.  I have had many more good days than bad.  A lot of chemo and radiation is not fun, but it is doable.  It has kept me around to welcome and cuddle four great grand kids.  My husband and I have been able to travel between treatments.  I just finished planting my flowers for the summer.  I am on Immunotherapy right now, Keytruda, and am having some success with it.  It has given me a year that I didn't think I would have.  There is always hope .

    Hugs md prayers, Lou Ann

    How're you doing Lou Ann?

    How're you doing Lou Ann? Always good to hear from you, enjoy your gardening!  

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #10
    derMaus said:

    How're you doing Lou Ann?

    How're you doing Lou Ann? Always good to hear from you, enjoy your gardening!  

    I am hanging in there

    Still some stomach problems and lot of fatigue left over from the radiation.  Otherwise not to bad.  I am working on ,y flower beds now that it is a little warmer.  My husband tried to help me weed earlier, but he really doesn't know the difference between grass, weeds and flowers, so I have a lot of weeding to do before I plant.

    Hugs and prayers, Lou Ann

  • Kvdyson
    Kvdyson Member Posts: 789
    edited June 2017 #11
    Carpit, so very sorry to hear

    Carpit, so very sorry to hear of this setback for you. Please try not to panic too much at the thought of getting chemo. My experience, and I hope yours is similar, is that it was not bad. Not fun, but not bad. It's really nothing like you might have seen on TV or in the movies.

    Do you know the type and grade of your cancer? Based on that information, you may want to research the "standard of care" chemo meds that your medical team may be considering for your treatment at the National Comprehesive Cancer Network (NCCN). They require a registration but it's free. Here is a link: https://www.nccn.org/store/login/login.aspx?ReturnURL=https://www.nccn.org/professionals/physician_gls/pdf/uterine_blocks.pdf

    Knowing that information can help you prepare a list of questions for your medical team (and/or us). One other recommendation is that getting a port made the infusion a lot easier so I would highly recommend one if that is an option for you.

    Stay hopeful and don't be a stranger. We're here for you! Kim

  • Carpit
    Carpit Member Posts: 19
    #12
    Thanks ladies for your

    Thanks ladies for your responses,greatly appreciated.  Thank you Kvdyson, for the links.

    I was initially diagnosed with high grade Uterine Sarcoma Stage 1B. My recurrence not yet staged. Hope I can withstand my chemo.  I've lost so much weight and trying to gain it back. Do they focus on nutrition or is that left up to the patient. Someone sent out a link that states a lot of cancer patients die of malnutrition. Need to put myself on a diet plan

  • derMaus
    derMaus Member Posts: 558 Member
    edited June 2017 #13
    Carpit said:

    Thanks ladies for your

    Thanks ladies for your responses,greatly appreciated.  Thank you Kvdyson, for the links.

    I was initially diagnosed with high grade Uterine Sarcoma Stage 1B. My recurrence not yet staged. Hope I can withstand my chemo.  I've lost so much weight and trying to gain it back. Do they focus on nutrition or is that left up to the patient. Someone sent out a link that states a lot of cancer patients die of malnutrition. Need to put myself on a diet plan

    I sent you a private message

    I sent you a private message, let me know if you received it. 

  • Carpit
    Carpit Member Posts: 19
    edited June 2017 #14
    AWESOME! Took me a while to

    AWESOME! Took me a while to figure out how to get it but I got it.

    Wishing you the Best of the Best

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