UPSC Survivors---I need your help.

msgypsylee
msgypsylee Member Posts: 3
in Uterine/Endometrial Cancer #1
My mom was recently diagnosed with UPSC. She goes in for her hysterectomy etc on the 26th of June. I'm sure you all know already but the reading I've been doing online about UPSC is pretty grim.

What I would like to know from those who have been fighting this disease, what has been successful for you in your treatment. Did you change your diets? use any alternative therapy's? I'm open to anything at this point.

She will start chemo a few weeks after her hysterectomy. She's having a total abdominal hysterectomy and they will be sampling everything else while they're in there. I just hope and pray it hasn't spread.

How did chemo affect you? what can I do to help her get through this?

I know I'm asking for a lot. Any guidance you can provide would be most appreciated.

Thank you,

Sarah

Comments

  • daisy366
    daisy366 Member Posts: 1,458 Member
    #2
    Sarah
    I'm sorry your mom has joined our UPSC ranks. Yes, online stats are pretty scary. I would encourage you to take all this with a "grain of salt".

    You will know more after the surgery. I think it is good to get that total abdominal surgery where the docs can get a good look at everything and sample lymph nodes. She will be staged and then treatment decisions will be made. The standard treatment is 6 treatments of chemo (often carboplatin and taxol combo) + or - radiation (some of us have and some not).

    I would try to think positive and have your mother think positively about her tolerance to treatment. I did very well - worked FT throughout chemo with little problems. I later learned that most people don't work during chemo (per my doc) and wondered how this knowledge would have affected me if I had known earlier. Our minds can make us sicker, for sure.

    There are some good books that talk about mind-body and anti-cancer strategies. Two I highly recommend are "Getting Well Again" by O. Carol Simonton and "Anti-Cancer: a New Way of Living" by Sirvan-Schreiber.

    I did change my diet and I exercise more and I changed my thinking and behaviors re: stress (not good for our health). I was diagnosed almost 4 years ago and am now dealing with a second recurrence but overall live a happy and fulfilling life. I have retired from FT work and get disability due to cancer. My husband continued to work so I could have health insurance but I will get medicare soon.

    How can you help your mom? by being supportive and encouraging. By praying and reaching out for help yourself. I would encourage your mother to ask lots of questions, write things down, get copies of records, get a tissue assay or her cancerous tissue, & work on staying positive.

    Hang in there. My prayers and best wishes are with you and your family,

    Mary Ann
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #3
    daisy366 said:

    Sarah
    I'm sorry your mom has joined our UPSC ranks. Yes, online stats are pretty scary. I would encourage you to take all this with a "grain of salt".

    You will know more after the surgery. I think it is good to get that total abdominal surgery where the docs can get a good look at everything and sample lymph nodes. She will be staged and then treatment decisions will be made. The standard treatment is 6 treatments of chemo (often carboplatin and taxol combo) + or - radiation (some of us have and some not).

    I would try to think positive and have your mother think positively about her tolerance to treatment. I did very well - worked FT throughout chemo with little problems. I later learned that most people don't work during chemo (per my doc) and wondered how this knowledge would have affected me if I had known earlier. Our minds can make us sicker, for sure.

    There are some good books that talk about mind-body and anti-cancer strategies. Two I highly recommend are "Getting Well Again" by O. Carol Simonton and "Anti-Cancer: a New Way of Living" by Sirvan-Schreiber.

    I did change my diet and I exercise more and I changed my thinking and behaviors re: stress (not good for our health). I was diagnosed almost 4 years ago and am now dealing with a second recurrence but overall live a happy and fulfilling life. I have retired from FT work and get disability due to cancer. My husband continued to work so I could have health insurance but I will get medicare soon.

    How can you help your mom? by being supportive and encouraging. By praying and reaching out for help yourself. I would encourage your mother to ask lots of questions, write things down, get copies of records, get a tissue assay or her cancerous tissue, & work on staying positive.

    Hang in there. My prayers and best wishes are with you and your family,

    Mary Ann

    Some more encouragement
    Dear Sarah
    I didn't have UPSC, I had endometroid adenocarcinoma, early stage (1A) low grade (1). That was 2 years ago. My only treatment was surgery and 2 years later, I'm still cancer free and it is not expected back.

    The UPSC encouragement I want to tell you is about 2 of my close personal friends who had UPSC. One was Stage 2 and is now 5 years NED. She still has exams and blood work every 6 months, but her gyn/onc told her at 5 years that he felt that she was going to remain cancer free. My other friend was stage 1b and 2 years later she too is still cancer free. Both women underwent chemotherapy and radiation treatments after their surgeries. Both remain NED.

    I hope when your mom has her surgery, her staging places her in an early stage of the disease. If not, you will see that many on this board are receiving various treatments and have lots of encouragement, wisdom and advice.

    Best wishes,
    Suzanne
  • msgypsylee
    msgypsylee Member Posts: 3
    #4
    Thank You
    Thank you so much for your support ladies. I've been in a bit of denial for a few days. I am feeling better about it though. My mom is ready to do what she has to do. I'm trying not to put the cart before the horse and worry too much until we get the results back after her hysterectomy.

    Blessings to all!!
  • foxyfoxfox
    foxyfoxfox Member Posts: 9
    #5
    msgypsylee said:

    Thank You
    Thank you so much for your support ladies. I've been in a bit of denial for a few days. I am feeling better about it though. My mom is ready to do what she has to do. I'm trying not to put the cart before the horse and worry too much until we get the results back after her hysterectomy.

    Blessings to all!!

    how are things?
    Hi Sarah

    I am new to all of this as well.
    I am wondering how your moms hysterectomy went!? Any info regarding staging of the disease? How are you guys doing?

    My mom was just recently diagnosed with UPSC and her hysterectomy is July 24, in two weeks. We are scared and I am trying to get some learning done regarding all of this.

    Any insight you can share is appreciated.

    Thanks!

    xo
  • msgypsylee
    msgypsylee Member Posts: 3
    #6
    foxyfoxfox said:

    how are things?
    Hi Sarah

    I am new to all of this as well.
    I am wondering how your moms hysterectomy went!? Any info regarding staging of the disease? How are you guys doing?

    My mom was just recently diagnosed with UPSC and her hysterectomy is July 24, in two weeks. We are scared and I am trying to get some learning done regarding all of this.

    Any insight you can share is appreciated.

    Thanks!

    xo

    The news is good
    Well as good as it can get with UPSC anyway. My mom's hysterectomy went great. The doc did a radical hystorectomy and also removed some lymphnodes and sampled her omentum. Everyting came back negative. Yay!!

    Her cancer was discovered when she went into have a fibroid removed and so far it seems that the only cancer was in the fiborid. The doc tells us she's stage 1. I don't know if its 1A,1B or 1C. Her CA 125 was 19 pre hysterecotmy.

    We have an appt with the gyn/onc on Thurs to discuss her next steps. From what I've read on here and other places I expect her to have several rounds of chemo. I'm not sure about radiation.

    I know even when caught early this disease is still nasty but I feel like this gives my mom a fighting chance. She's 79 and otherwise in good health. No I just hope the chemo doesn't take too much out of her.

    When I first heard she had this disease I was terrified for her. I of course read everything I could find and that made it even scarier. I'm glad my mom is completely computer illiterate!! She doesn't need all of this stuff in her head. I think my best advice for you now is don't worry till you have to worry. I was sure my mom's disease was advanced. Her fibroid was hugh so I though man its a big one, must be advanced. Everytime she would cough I thought oh no, maybe its moved to her lungs. Her hip was hurting, I thought maybe its in her bones.

    Through it all though I tried to keep a positive attitude and I think it helped her. I let her talk when she needed to and just listened.

    I so hope your mom is in a similar position to mine. I hope she is early stage.

    How are you and your mom doing?
  • foxyfoxfox
    foxyfoxfox Member Posts: 9
    #7
    msgypsylee said:

    The news is good
    Well as good as it can get with UPSC anyway. My mom's hysterectomy went great. The doc did a radical hystorectomy and also removed some lymphnodes and sampled her omentum. Everyting came back negative. Yay!!

    Her cancer was discovered when she went into have a fibroid removed and so far it seems that the only cancer was in the fiborid. The doc tells us she's stage 1. I don't know if its 1A,1B or 1C. Her CA 125 was 19 pre hysterecotmy.

    We have an appt with the gyn/onc on Thurs to discuss her next steps. From what I've read on here and other places I expect her to have several rounds of chemo. I'm not sure about radiation.

    I know even when caught early this disease is still nasty but I feel like this gives my mom a fighting chance. She's 79 and otherwise in good health. No I just hope the chemo doesn't take too much out of her.

    When I first heard she had this disease I was terrified for her. I of course read everything I could find and that made it even scarier. I'm glad my mom is completely computer illiterate!! She doesn't need all of this stuff in her head. I think my best advice for you now is don't worry till you have to worry. I was sure my mom's disease was advanced. Her fibroid was hugh so I though man its a big one, must be advanced. Everytime she would cough I thought oh no, maybe its moved to her lungs. Her hip was hurting, I thought maybe its in her bones.

    Through it all though I tried to keep a positive attitude and I think it helped her. I let her talk when she needed to and just listened.

    I so hope your mom is in a similar position to mine. I hope she is early stage.

    How are you and your mom doing?

    Thats great!

    i suppose a stage 1 diagnosis is what you want to hear!

    My mom goes for her cat scan tomorrow and then a pre op appointment on Thursday. I think the plan right now for the hysterectomy is to be pretty brutal and take everything out.

    Like your mom her cancer was discovered with the removal of a fibroid and also like you every time she coughs I get worried about her lungs! Its amazing how our minds can go to horrible places. She is nauseous and exhausted all the time now and is having a few other odd symptoms. We need more info plain and simple. Im certainly not a doctor.

    Thanks for your response and I hope all goes smooth for your mom in the next while.

    Take care!
  • FLL33
    FLL33 Member Posts: 2
    #8
    foxyfoxfox said:

    Thats great!

    i suppose a stage 1 diagnosis is what you want to hear!

    My mom goes for her cat scan tomorrow and then a pre op appointment on Thursday. I think the plan right now for the hysterectomy is to be pretty brutal and take everything out.

    Like your mom her cancer was discovered with the removal of a fibroid and also like you every time she coughs I get worried about her lungs! Its amazing how our minds can go to horrible places. She is nauseous and exhausted all the time now and is having a few other odd symptoms. We need more info plain and simple. Im certainly not a doctor.

    Thanks for your response and I hope all goes smooth for your mom in the next while.

    Take care!

    UPSC
    I had the same surgery on June 7th. Mine began with a polyp which led to a total hysterectomy. The cancer was contained within the endometrium with no spread to the lymph nodes or anywhere else. No further treatment was recommended, but they will follow up with CA125 testing, but the first one will be 5 months after the surgery. These 5 months are frightening to me as I know this is a very aggressive cancer which can recur at distant sites. Any advice?
  • LizGrrr
    LizGrrr Member Posts: 127 Member
    #9
    foxyfoxfox said:

    Thats great!

    i suppose a stage 1 diagnosis is what you want to hear!

    My mom goes for her cat scan tomorrow and then a pre op appointment on Thursday. I think the plan right now for the hysterectomy is to be pretty brutal and take everything out.

    Like your mom her cancer was discovered with the removal of a fibroid and also like you every time she coughs I get worried about her lungs! Its amazing how our minds can go to horrible places. She is nauseous and exhausted all the time now and is having a few other odd symptoms. We need more info plain and simple. Im certainly not a doctor.

    Thanks for your response and I hope all goes smooth for your mom in the next while.

    Take care!

    Joining the club
    my fibroid housed UPSC Stage 1A, and I had my radical hysterectomy/staging surgery in November last year, followed by 3 rounds of chemo, 25 rounds of external radiation, and 3 more rounds of chemo. One gyn/onc said I didn't need to do anything after surgery, another recommended the adjunct treatments. Heck, I wanted to be aggressive!

    Fortunately my body tolerated treatments well and I'm 6 weeks post-treatment and feeling great. I'll have ct scans and pelvic and rectal exams every few months for the next couple of years - each time I go in I pray the results are negative.

    UPSC is a bad luck disease. Even with aggressive treatment there's no guarantee it won't metastasize. For now, I'm thrilled to be here and feeling strong.

    Liz in Dallas

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