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UPSC survivors

Flufff
Flufff Member Posts: 67

Hi all. 

Secons post ;)

7 months ago, I got diagnoses with UPSC stage 4.... didn’t realize how serious serous cancer was, for quite some time. It dawnes on my, as i made the connection between serous and UPSC....

Stage 4 because it spread to distant lymph nodes..

I could be facing a reccurance already now, before first line treatment was done. Meaning cancer grew while under chemotherapy (taxol and carboplatin) They saw something in my spleen.. Its rare, but there are example.

I also ran into a second surgery, as my colon got obstructed.. Open surgery once again, 3 months after abdominal hysterectomy. I have a 12” scar running down my belly.... Lovely :D

I have a scan coming up on April 30th. PET-CT scan. It’s bloody nerve wrecking :(

And now I just read of a lady from this group that died. Also from UPSC. I could use some positive stories. ❤️ Please share ❤️

 

Comments

  • takingcontrol58
    takingcontrol58 Member Posts: 264
    See my post for you under "mets to the spleen"

    Flufff,

    I posted something for you under the "mets to the spleen" section you posted
    the other day.

     

    Takingcontrol58

  • Flufff
    Flufff Member Posts: 67
    edited April 2019 #3

    See my post for you under "mets to the spleen"

    Flufff,

    I posted something for you under the "mets to the spleen" section you posted
    the other day.

     

    Takingcontrol58

    Thanks takingcontrol58. I

    Thanks takingcontrol58. I just replied you on that post. :)

  • I'm here!

    Stage 3 grade 3C in November 2016.  Historectomy with several lymph nodes removed, one had microsopic serous cells.  And I'm doing great.  My doctor only looks/ asks for symptoms.  I don't have scans or C125 tests.  He says that if my cancer comes back, I will have symptoms, and then he will treat.  So I'm living without nagging worries, or scan-xiety's.  I jad 6 chemo treatments, no radiation.  Last year I had high liver AST SGOT, my primary doctor had a ct scan done, it turned out to be a hemo on my liver, nothing to worry about.  Trust your doctor, and listen to what they say.  There are lots of us here, Hugs Nancy

  • Jairoldi
    Jairoldi Member Posts: 221
    Me too

    I also have UPSC. Stage 3B. May 1 will be two years from surgery. I had chemo and pelvic radiation. I am doing well though it took some time to feel like myself again.  I've had 2 scans, once before surgery and once after completing treatment to serve as my new baseline. Like DonsWife my doc will only now do scans if I develop symptoms.

  • Flufff
    Flufff Member Posts: 67
    Strange

    I am at stage 4 and prior to diagnosis, I had ZERO symptoms. 

  • EZLiving66
    EZLiving66 Member Posts: 1,476 **
    I am also UPSC, Stage II (or

    I am also UPSC, Stage II (or maybe III since no lymph nodes were taken during a hysterectomy). I had no symptoms prior to being diagnosed. Now, over 3 1/2 years later I'm still NED. No scans or CA125 tests for me either. I had some hip pain last summer and had an x-ray but no cancer and was treated for sciatica. I see my GP every six months now and probably will for the rest of my life. Lots of side effects from the chemo, but I'm alive!

    Love,

    Eldri

  • Jairoldi
    Jairoldi Member Posts: 221
    Flufff said:

    Strange

    I am at stage 4 and prior to diagnosis, I had ZERO symptoms. 

    Slight Symptoms

    Prior to diagnosis I only had a slight symptom.  So slight that my GP waited 2 months to do the biopsy.  I feared it was cancer.

     

  • BluebirdOne
    BluebirdOne Member Posts: 475 **
    Flufff said:

    Strange

    I am at stage 4 and prior to diagnosis, I had ZERO symptoms. 

    That is what scares the crap out of me.

    I only had a tiny bit of pink discharge, twice, so small I could have easily dismissed it. Ladies with no symptoms stage 4 is about as scary as possible for recurrence.   How can a doctor treat you initially or for recurrence when there are no symptoms? It does not compute. By the same token we have ladies here who were bleeding all over the place and the doctors would not believe they had cancer. I am thinking of you. 

    xoxo

    Denise

  • rcdeman
    rcdeman Member Posts: 263
    Hi Flufff,

    Hi Flufff,

    My mother, Ellen, had UPSC Stage IIIC2. It also spread to her more distant lymph nodes. She's now in her second year of remission and her last CT scan last week showed no signs of abnormality. Like you, she also had two surgeries and then the sandwich treatment with carbo/taxol + external/internal radiation treatments. Due to various issues, her treatment was prolonged. She still has a little neuropathy and some abdominal twinges once in a while, but for the most part, she's doing great.

    I would advise asking your doctor to check for CA-125. It is a good indicator for some but for others not so much. Doesn't hurt to try.

    Take care,
    Rebecca

  • cheerful
    cheerful Member Posts: 261

    Hi Ladies:  I am a UPSC Survivor - Stage 1. I was diagnoed in February of 2011 and the cancer was found when I had a hysterectomy in early February of 2011.  My gynecologist did my surgery and I then met with my oncologist who mentioned I had UPSC and that he recommended a very aggressive treatment plan with 6 rounds of chemo and 3 rounds of brachytherapy which I started in April of 2011 and finished brachytherapy in October of 2011.  It took me a long time to feel better and myself again well over a year.  I did have a reoccurrence in 2016 after I had reached my 5 year mark with No evidence of disease and then the cancer the 2nd time in 2016 just disppeared (mirauculously)  and just left me. To date, I am still in remission with No evidence of disease thankfully.  I am going for bloodwork for the CA 125 next week and an ultrasound of the abdomen and pelvis towards the end of May in a couple more weeks.  To date, I am very happy and glad to be in remission with No evidence of disease and am enjoying every day of my life.  Over a year ago, I got neuropathy (most likely from the chemo from 8 years ago) so I am taking Gabapentin 300 milligrams 2 times a day for it and it helps a great deal. The neuropathy is all over in my hands, feet and in the top of my spine and also in my teeth but it is minimal in my teeth and the top of my spine.    It was baffling I got neuropathy so many years after my chemo treatments in 2011.  I am glad I can enjoy life and meet with my family and friends for lunches and it is so great to see them.  I feel very fortunate to still be alive from dealing with a cancer diagnosis.   

    Warmly,

    Jane

  • zsazsa1
    zsazsa1 Member Posts: 547
    Cheerful, I had no idea the

    Cheerful, I had no idea the neuropathy could come on so late!  I declined the last dose of Taxol because I was developing significant numbness in my feet, but even more so because I had an episode of sharp, stabbing pain in my big toe.  I don't think that I could have slept at all if that had continued, so I stopped the Taxol.  Of course I'm afraid of a recurrence, but hearing that you had significant neuropathy show up 8 years after treatment makes me feel a little bit better about having declined that last dose of Taxol.

  • BluebirdOne
    BluebirdOne Member Posts: 475 **
    cheerful said:

    Hi Ladies:  I am a UPSC Survivor - Stage 1. I was diagnoed in February of 2011 and the cancer was found when I had a hysterectomy in early February of 2011.  My gynecologist did my surgery and I then met with my oncologist who mentioned I had UPSC and that he recommended a very aggressive treatment plan with 6 rounds of chemo and 3 rounds of brachytherapy which I started in April of 2011 and finished brachytherapy in October of 2011.  It took me a long time to feel better and myself again well over a year.  I did have a reoccurrence in 2016 after I had reached my 5 year mark with No evidence of disease and then the cancer the 2nd time in 2016 just disppeared (mirauculously)  and just left me. To date, I am still in remission with No evidence of disease thankfully.  I am going for bloodwork for the CA 125 next week and an ultrasound of the abdomen and pelvis towards the end of May in a couple more weeks.  To date, I am very happy and glad to be in remission with No evidence of disease and am enjoying every day of my life.  Over a year ago, I got neuropathy (most likely from the chemo from 8 years ago) so I am taking Gabapentin 300 milligrams 2 times a day for it and it helps a great deal. The neuropathy is all over in my hands, feet and in the top of my spine and also in my teeth but it is minimal in my teeth and the top of my spine.    It was baffling I got neuropathy so many years after my chemo treatments in 2011.  I am glad I can enjoy life and meet with my family and friends for lunches and it is so great to see them.  I feel very fortunate to still be alive from dealing with a cancer diagnosis.   

    Warmly,

    Jane

    Jane,

    So glad you are doing well. Gives us recently diagnosed UPSCs hope for the future. Good luck to you in the future!

    Denise 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,928 **
    edited May 2019 #14
    Zuhdi, your mother is lucky

    Zuhdi, your mother is lucky you are out looking for answers.  My recommendation would be wait and see what is determined after surgery.  Waiting is difficult, but anything now would be speculation and you really want the facts.  

    Please keep us posted how your mom is doing.

  • ConnieSW
    ConnieSW Member Posts: 1,578 **
    Welcome, Zuhdi

    No time is right. at the moment it's a wait and see game. I'm glad your mom doesn't have to wait too long for surgery. By the way, I was diagnosed with UPSC at the same age as your mom. That was over 7 years ago and I'm still here. 

  • Zuhdi
    Zuhdi Member Posts: 1
    UPSC stage ?

    Hello everyone, my mother 65 yo had  biopsy and she was diagnosed with UPSC . Need to mention that she had vaginal  bleeding 8 months before seeing the doctor (she dont complain alot :/). The cancer is 2cmx2cm and it is only in the endometrium , it didnt exceed to the myometruim or junctional zone, but in the ct scan it shows that 2 lymph nodes are suspicious 0.7cm x 0.9 cm but can't tell if they are infected or not (unless hysterectomy is done). the surgery is on 8th may 2019 after 4 days. I read that if the junctional zone and the myometruim is not infected it indicates a miniamally invasive disease,is that true ?

    We are waiting the surgery,I pray that the lymph nodes are not infected and its just a normal inflation.

  • artist49
    artist49 Member Posts: 87
    edited May 2019 #17
    Survivor

    I  WAS DIAGNOSED with UPSC stage 4B with spread to 40 lymph nodes in September 2010. Had treatment and in remission since then. Changed my diet COMPLETELY and exercise every day.  There is hope. Don't  despair!

  • Lasha12
    Lasha12 Member Posts: 8
    edited May 2019 #18

    My symptom was vaginal bleeding after menopause. Never smoked, hardly any alchohol, exercised all my life and a vegetarian - go figure. But, gained weight from stressful job and exercised less. Was hardly ever sick so it hit me like a deer in headlights. Still doesn't seem real but can't deny my hair loss, continued soreness from full lapro hysterectomy, three rounds of chemo and four rounds of internal radiation. Meeting soon with gyno oncologist and guess it's monitoring every 3 months. Had hysterectomy 12/2018 but still feel like I've been beat up, my hysterectomy sutures were pussing during chemo and also got colitis sepsis. Fun times.   My outlook is positive and a little disconnected to the whole cancer thing. I just want to go hiking and walking with my dog. 

  • Forherself
    Forherself Member Posts: 609 **
    Lasha12 said:

    My symptom was vaginal bleeding after menopause. Never smoked, hardly any alchohol, exercised all my life and a vegetarian - go figure. But, gained weight from stressful job and exercised less. Was hardly ever sick so it hit me like a deer in headlights. Still doesn't seem real but can't deny my hair loss, continued soreness from full lapro hysterectomy, three rounds of chemo and four rounds of internal radiation. Meeting soon with gyno oncologist and guess it's monitoring every 3 months. Had hysterectomy 12/2018 but still feel like I've been beat up, my hysterectomy sutures were pussing during chemo and also got colitis sepsis. Fun times.   My outlook is positive and a little disconnected to the whole cancer thing. I just want to go hiking and walking with my dog. 

    Welcome

    We are sorry that you are dealing with this.   Your story is familiar to us all.   You have posted at the bottom of an old post.  You will receive more feedback if you create a new post. It is good to be able to talk about your concerns and difficultires with woman who have been there.  

    I think the disolving sutres don't disolve very well sometimes.  I had one suture that took forever to heal on my abdomen.  My internal sutures healed fine.  I actually could feel the suture sticking out of my skin, so my husband and I pulled it out.  He is a doctor and I am a nurse,   Probably not a good idea for everyone.   It healed after that.