Anyone with Stage 1a UPSC?

2

Comments

  • CindyGSD
    CindyGSD Member Posts: 190
    #22
    Hilajoan said:

    Carcinosarcoma of endometrium - just had surgery
    I'm not quite sure yet, till I see the oncologist, but it seems I am joining the party - see below.


    Had breast cancer and mastectomy in March this year. Not quite reconciled to that when started bleeding down below and saw gynae who passed me on to surgeon/oncologist; found a cancer in the ediometrium. He operated 8 days ago - radical hysterectomy and yesterday he told me it was a Stage 1 carcinosarcoma, Grade III. If I understood him correctly, he said it doesn't respond to Chemo, it's not hormonal so no hormone treatment, and radiation limited in its use. Can radiate the vagina, and might radiate the bladder and/or bowel with adverse effects. Had been due to have an appointment with the breast cancer oncologist, to discuss further treatment after hating Arimidex effects - that's on hold for now. I have to see gynae oncologist on Thursday, probably to discuss what to do. Interested to read that others ARE having Chemo. I guess I'll keep you all posted, if you want to hear? HilaJoan.

    Smack upside the head....
    ..is what your oncologist needs. Standard treatment for Carcinosarcoma is chemo and pelvic radiation. I'm not sure what radiating the virgina means unless he is talking about brachytherapy which is internal radiation.

    I am currently getting radiation...12 rounds complete, 13 more to go, so far no side effects. I will also be getting internal radiation and am half way through my chemo treatments.

    I know that some studies have shown that brachytherapy is sufficient and no pelvic radiation is needed so perhaps because of your early stage that might be a better option for you and you may not NEED chemo, but that is completely different then saying chemo and radiation doesn't work on this kind of cancer.

    Just because its rare doesn't mean it's untreatable and with your early stage, certainly it's curable.

    I think I'd be seeking a second opinion.

    Take care,

    Cindy

    PS - you might want to start a discussion thread of your own to get more responses. Your post here is kind of lost in the sea of other posts about a completely different type of uterine cancer.
  • Pat51
    Pat51 Member Posts: 130
    #23
    cheerful said:

    Hi Pat:

    Yes, I too, would definitely like to stay in contact. My actual name is Jane and I live in the suburbs of Phila., PA (Delaware County, PA). I turned 60 in July.

    Where in Wisconsin do you live?

    Your right, UPSC is a difficult diagnosis to handle. I do feel though that I have done everything I could have to fight and survive this cancer. It is a bad cancer to be diagnosed with and very scary as well, but thankfully for us and I am very grateful that our cancers were caught at an early stage and our chances of surviving are good. Hopefully, it won't return on either of us.

    You started your chemo a lot sooner that I did. With me, my incision opened up after a week and I had to go back in the hospital for 2 additional days and then I had a home health nurse coming to my house to care for my incision for 5 weeks before it was completey healed. Two weeks after it healed, I started with chemo. I feel I have been on a treadmill and rollercoaster ride since January with meeting with my gyn, then the surgery, meeting with my oncologist, and then healing of my incision and then starting chemo and then radiation so just about all this year I have been dealing with surgery and then cancer. My doctors are great and I feel they did so much for me and I greatly credit both my gyn and oncologist for saving my life. My radiologist was very nice as well and I saw him a week ago for a follow-up visit.

    I see my oncologist the end of January for a follow-up visit and exam. My oncologist has 35 years of experience and is very knowledgeable about UPSC. He is known locally and nationally as well.

    In the meantime, I can enjoy the holidays with my family and friends. On Thanksgiving, I do have a lot to be thankful for.

    Anyway, good luck with your oncologist appt. on December 1st and let me know how it goes.

    I just read that it takes about 6 months before you get your energy back on one of the sites on this board after completing your treatments. I am still very tired and I know it will take more time before I regain my strengh and energy. I did speak to an oncology nurse at the American Cancer Society and she mentioned to me a person won't have the same stamina they did before they were diagnosed with cancer and then having treatments.

    Keep in touch.

    Cheerful (also known as Jane)

    Cheerful
    I live in east central Wisconsin. I turned 60 in June.

    I, too, am grateful for having caught the cancer early but the chance of recurrence is higher than with other uterine cancer. I had robotic surgery done and had a faster recovery than abdominal surgery. The robotic surgery was extensive. My surgery took 7 1/2 hours. My GYN is very good. There is no GYN-oncologist in my area and my oncologist has not seen many cases of UPSC. He has consulted with a GYN oncologist from Milwaukee.

    I am just starting to feel more normal now and gaining more energy. Being able to walk around has made me feel more normal. I was so fatigued during treatment that walking was difficult for me. I have just started working full time again, but I do get really tired. I am still suffering other rare side effects but getting better all the time.

    My email is basketaddict@charter.net. I would love to keep in contact with you. We can compare notes since our situations are so similar.

    I hope that you have a Happy Thanksgiving.

    Pat
  • fanniemay
    fanniemay Member Posts: 53
    #24
    Rewriter said:

    Random study for Stage 1a UPSC
    Hi, Fanniemay:

    As you probably know, the prognosis of someone with Stage 1a UPSC is generally good. That is not to say that I would recommend continuing to live your life the way you did before diagnosis. For me, changes in my diet and level of exercise have been critically important to my health and to remaining NED. The best advice I can give you is to read through the threads on diet, consider incorporating more anticancer foods, and up your level of exercise and stress-fighting activities (e.g., yoga, meditation, laughter).

    Your treatment decisions depend on so many things. If it were I, I would read as many studies as I could find (as Claudia says, "Google is your friend"); research every option, its success rate, and its side effects; and ask your oncologist as many questions as you can think of. I would hesitate to be a guinea pig in the study you describe: the side effects from 28 rounds of pelvic radiation are much more significant than those from vaginal brachytherapy; and I would imagine that the study is being done because no one has yet proven that pelvic radiation is MORE effective than brachytherapy for Stage 1a. I and most of the women here who have had brachytherapy would describe it as having no or minimal side effects. Please remember, though, that I am NOT an oncologist; so be sure to determine WHY your doctor asked you to participate in the study.

    I am not spending as much time on this board as I used to, but I should be able to respond to your posts within a couple of days. In the meantime, good look and know that there are quite a few women here with UPSC who are doing just fine. I had six rounds of carbo/taxol and five brachytherapy treatments and have been NED since ending treatment in November 2008.

    Regards,
    Jill

    random study for 1a UPSC
    Jill, Thank you so much for posting what treatments you had and what kind of lifestyle changes you have made. Is there a certain book you would recommend that has anti-cancer fighting foods and diet? I have read that shark cartilage and flax seed are also good. I definitely am going to get the tumeric/black pepper/olive oil going. I can put that on my whole grain toast every morning. Exercise and stress free lifestyle is also important. Have cut out most sugar and white flour, and soda so far. Any other insite you might have would be greatly appreciated. Regards, Edith
  • minniejan
    minniejan Member Posts: 88
    #25
    fanniemay said:

    I have stage 1 UPSC
    Hi Jill, I have stage 1 UPSC. You are just the person I have been looking for. I had my surgery Monday and Found my staging was 1A which means it was contained in the Uterine wall. I have been wondering what treatments are the most useful. My oncol asked me to be part of a random study. I would have no choice of which study I would be in, It is either 28 pelvis radiation therapy w/vaginal cuff boost or the other study is vaginal cuff brachytherapy plus 3 cycles of chemo to start within 3 weeks of brachytherapy. I can also not be part of the study and just go by what my onco recommends. Please tell me how many rounds of chemo you had. Maybe we can keep in touch via email and see how one another is doing. Regards, Fanniemay

    my experience
    Hello,

    I had UPSC stage 1A (Dec 2010 surgery) and I had three chemo treatments three weeks apart (carbo and taxol) and between the chemo treatments I had three brachytherapy radiations, so I was done quickly, but my blood levels were terrible, and had to have blood transfusion. I was beyond exhausted. At the time I did not question it, but the normal protocol appears to be 3 chemo treatments, then radiation, then three more chemo treatments. I was not part of a study. So far, depending upon how this is counted, I am six months NED with my next appointment January 2011. Perhaps the upside to my treatment is that I was done quickly, but am still suffering from tiredness.

    Best wishes on your treatment.

    MinnieJan
  • fanniemay
    fanniemay Member Posts: 53
    #26
    minniejan said:

    my experience
    Hello,

    I had UPSC stage 1A (Dec 2010 surgery) and I had three chemo treatments three weeks apart (carbo and taxol) and between the chemo treatments I had three brachytherapy radiations, so I was done quickly, but my blood levels were terrible, and had to have blood transfusion. I was beyond exhausted. At the time I did not question it, but the normal protocol appears to be 3 chemo treatments, then radiation, then three more chemo treatments. I was not part of a study. So far, depending upon how this is counted, I am six months NED with my next appointment January 2011. Perhaps the upside to my treatment is that I was done quickly, but am still suffering from tiredness.

    Best wishes on your treatment.

    MinnieJan

    my experience
    Hi, I see my surgeon on Thursday. The radiologist did also recommend the 3 internal treatments and I'm thinking my surgeon will recommend the 3 chemos. I have also heard chemo does a real job on your immune system. I am going to buy a big bottle of hand sanitizer and put it right by my front door for anyone that comes over to use. Hoping not to get any kind of cold or flu after chemo. Thanks for letting me know about the exhaustion; cause I thought with only 3 it might not be that bad....but I will do whatever the drs. recommend. today I see the gastrointestinal dr....need a colonoscopy and maybe a stomach scope. My bowels had been acting up, but are a lot better since taking probiotic. Please keep us updated. Thanks, minniemay
  • LizGrrr
    LizGrrr Member Posts: 127 Member
    #27
    fanniemay said:

    I have stage 1 UPSC
    Hi Jill, I have stage 1 UPSC. You are just the person I have been looking for. I had my surgery Monday and Found my staging was 1A which means it was contained in the Uterine wall. I have been wondering what treatments are the most useful. My oncol asked me to be part of a random study. I would have no choice of which study I would be in, It is either 28 pelvis radiation therapy w/vaginal cuff boost or the other study is vaginal cuff brachytherapy plus 3 cycles of chemo to start within 3 weeks of brachytherapy. I can also not be part of the study and just go by what my onco recommends. Please tell me how many rounds of chemo you had. Maybe we can keep in touch via email and see how one another is doing. Regards, Fanniemay

    Just started chemo
    Had my laparotomy on November 7, and after a few setbacks (incision infection, but not bad enough to send me back to the hospital - just to my own personal loony bin) started the first of 3 rounds of chemo this week. Chemo was actually relaxing (in between massive bouts of peeing!) and two days later I'm a bit sore and tired but not as bad as anticipated. I'll have two more rounds of chemo and then internal radiation.
  • imackie48
    imackie48 Member Posts: 96
    #28
    LizGrrr said:

    Just started chemo
    Had my laparotomy on November 7, and after a few setbacks (incision infection, but not bad enough to send me back to the hospital - just to my own personal loony bin) started the first of 3 rounds of chemo this week. Chemo was actually relaxing (in between massive bouts of peeing!) and two days later I'm a bit sore and tired but not as bad as anticipated. I'll have two more rounds of chemo and then internal radiation.

    chemo too
    Hi Liz, I had my surgery November8th, robotic type. I was, starting my chemo in Jan., do you still have discomfort in your abdomen? I thought I would be doing better by now, the Doc says it's inflammation of the tissues and it's normal. I am dreading Chemo, I know there are so many side effects. I have been scheduled for 4 treatments. I have drinking high protein energy shakes now to gain some weight, I anticipate losing weight.
  • LizGrrr
    LizGrrr Member Posts: 127 Member
    #29
    imackie48 said:

    chemo too
    Hi Liz, I had my surgery November8th, robotic type. I was, starting my chemo in Jan., do you still have discomfort in your abdomen? I thought I would be doing better by now, the Doc says it's inflammation of the tissues and it's normal. I am dreading Chemo, I know there are so many side effects. I have been scheduled for 4 treatments. I have drinking high protein energy shakes now to gain some weight, I anticipate losing weight.

    Chemo can be dealt with :)
    My first chemo was 5 weeks post surgery - which in turn was 3 weeks post-robotic hysterectomy. I bounced back really well from the hysterectomy but was glad to have more time between surgery #2 and chemo. Chemo itself was easy but it's true that you don't really feel the impact for a couple of days. It's no walk in the park (bone pain, fatigue, bone pain, constipation, did I mention bone pain?) but so far I've been able to get through it. I'm resting a lot, trying to eat well and stay hydrated, and not pushing myself. The hydrcodone let's me get out and about for a couple of hours each day, otherwise I'm fine hibernating under a blanket. You'll get through it - I promise!
  • LizGrrr
    LizGrrr Member Posts: 127 Member
    #30
    imackie48 said:

    chemo too
    Hi Liz, I had my surgery November8th, robotic type. I was, starting my chemo in Jan., do you still have discomfort in your abdomen? I thought I would be doing better by now, the Doc says it's inflammation of the tissues and it's normal. I am dreading Chemo, I know there are so many side effects. I have been scheduled for 4 treatments. I have drinking high protein energy shakes now to gain some weight, I anticipate losing weight.

    Chemo can be dealt with :)
    My first chemo was 5 weeks post surgery - which in turn was 3 weeks post-robotic hysterectomy. I bounced back really well from the hysterectomy but was glad to have more time between surgery #2 and chemo. Chemo itself was easy but it's true that you don't really feel the impact for a couple of days. It's no walk in the park (bone pain, fatigue, bone pain, constipation, did I mention bone pain?) but so far I've been able to get through it. I'm resting a lot, trying to eat well and stay hydrated, and not pushing myself. The hydrcodone let's me get out and about for a couple of hours each day, otherwise I'm fine hibernating under a blanket. You'll get through it - I promise!
  • imackie48
    imackie48 Member Posts: 96
    #31
    fanniemay said:

    stage 1A UPSC
    Hi MinnieJan, I just was diagnosed with 1A UPSC this week. Hoping all of us with 1A can keep in touch either on this board or by email.

    Me too 1a
    Hi girls, me too 1a, I'm getting 4 chemos Taxol carbo and 2 brachytherapys
    What size was your tumor?

    Irene
  • MTheresa
    MTheresa Member Posts: 6
    #32
    UPSC

    Don't stop posting!!  It's too important since information is lacking on this particular cancer.  I appreciate it all.  I'm stage 1A grade 3 and will find out my specific treatment this week, although I know it is paclitaxel carboplatin and brachytherapy.  Everyone is helpful to me.

     

  • debrajo
    debrajo Member Posts: 1,095 Member
    #33
    MTheresa said:

    UPSC

    Don't stop posting!!  It's too important since information is lacking on this particular cancer.  I appreciate it all.  I'm stage 1A grade 3 and will find out my specific treatment this week, although I know it is paclitaxel carboplatin and brachytherapy.  Everyone is helpful to me.

     

    upsc

    yep, me too. 1a grade c(111) upsc, dx july 26, 2009.  Six rounds taxol/carboplatin and five brachytherapy.  Finished May 8, 2010 and NED ever since.  I'm at M.D. Anderson, also.  If I had of found this site IN THE BEGINNING i would have done much better.  I didn't land here til four months after joining my main squeeze, NED!  Best, debrajo

  • Rewriter
    Rewriter Member Posts: 493 Member
    #34
    debrajo said:

    upsc

    yep, me too. 1a grade c(111) upsc, dx july 26, 2009.  Six rounds taxol/carboplatin and five brachytherapy.  Finished May 8, 2010 and NED ever since.  I'm at M.D. Anderson, also.  If I had of found this site IN THE BEGINNING i would have done much better.  I didn't land here til four months after joining my main squeeze, NED!  Best, debrajo

    How is everyone doing?

    It has been a while since those of us with Stage 1a UPSC have checked in with each other. How is everyone? Next Wednesday, I will be going for my last six-month checkup. It is five years since my surgery; and provided that everything looks good, I will be released to a regular gynecologist and back to once-a-year appointments. I'm anxious about this appointment but probably because I tend to be superstitious. I feel fine and continue to eat an anti-cancer diet and walk about 15 to 20 miles a week.

    If you are in this subgroup of women with UPSC, please check in.

     

    Jill

     

     

     

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #35
    Rewriter said:

    How is everyone doing?

    It has been a while since those of us with Stage 1a UPSC have checked in with each other. How is everyone? Next Wednesday, I will be going for my last six-month checkup. It is five years since my surgery; and provided that everything looks good, I will be released to a regular gynecologist and back to once-a-year appointments. I'm anxious about this appointment but probably because I tend to be superstitious. I feel fine and continue to eat an anti-cancer diet and walk about 15 to 20 miles a week.

    If you are in this subgroup of women with UPSC, please check in.

     

    Jill

     

     

     

    Congratulations

    I hope I do as well.  Iam UPSC 1A, 1 year since surgery, 8 months post chemo and am currently NED.

  • Rewriter
    Rewriter Member Posts: 493 Member
    #36
    ConnieSW said:

    Congratulations

    I hope I do as well.  Iam UPSC 1A, 1 year since surgery, 8 months post chemo and am currently NED.

    Congratulations to YOU, Connie

    Thanks for letting us know how you are. You should be dancing with NED forever!

  • cheerful
    cheerful Member Posts: 261 Member
    #37
    Rewriter said:

    How is everyone doing?

    It has been a while since those of us with Stage 1a UPSC have checked in with each other. How is everyone? Next Wednesday, I will be going for my last six-month checkup. It is five years since my surgery; and provided that everything looks good, I will be released to a regular gynecologist and back to once-a-year appointments. I'm anxious about this appointment but probably because I tend to be superstitious. I feel fine and continue to eat an anti-cancer diet and walk about 15 to 20 miles a week.

    If you are in this subgroup of women with UPSC, please check in.

     

    Jill

     

     

     

    Congratulations!

    Jill, I am really happy to hear that you have reached your 5 year mark of being cancer free and congratulations to you as well.  You must be so proud and very happy. Continued success and best wishes for the future.

    In response to your post, I am 2 years out since my diagnosis from February of 2011.  I went to see my oncologist last week and he said from my exam that it looks normal for which I am happy and thankful. So far, so good.  I still have this year and a couple of years to go still but will continue to hope for the best.  I know how scary of a diagnosis this disease is and in the beginning, I did not know if I would live or die.  But I had a positive attitude all along and that has what has kept me going.  I also have a very strong support system of friends and family and got so many well wishes when I was first diagnosed and going through chemo and radiation.  I am very grateful for each day that I have and live life to the fullest since my cancer diagnosis changed me.   

    My oncologist took a pap smear for which I will call for the results in a couple of weeks.  I also need to have blood work done in May and a cat scan in June. I am hoping for good results.  I just hope that I can continue to remain cancer free.  I have changed my eating habits for the better since getting diagnosed with cancer.

     My son is a very Big inspiration for me and has been helping me with better eating habits.  My son lost about 120 lbs. from cycling over the past 4 years and he looks really great.  He weighed about 260 lbs. in 2009 and is now down to the mid 140 level in 2013.  He lost weight each year and has cycled over 18,000 miles and is 18 years old. He eats well and still cycles every day or as much as the weather allows him to.

    Good luck to you in the future, and may you enjoy life and please keep in touch.

    Cheerful

     

  • debrajo
    debrajo Member Posts: 1,095 Member
    #38
    Rewriter said:

    How is everyone doing?

    It has been a while since those of us with Stage 1a UPSC have checked in with each other. How is everyone? Next Wednesday, I will be going for my last six-month checkup. It is five years since my surgery; and provided that everything looks good, I will be released to a regular gynecologist and back to once-a-year appointments. I'm anxious about this appointment but probably because I tend to be superstitious. I feel fine and continue to eat an anti-cancer diet and walk about 15 to 20 miles a week.

    If you are in this subgroup of women with UPSC, please check in.

     

    Jill

     

     

     

    Hi Jill, I'm 1a UPSC and I'm

    Hi Jill, I'm 1a UPSC and I'm still here also.  If everything is ok come May 22 I will be three years clear out of chemo.  I'm doing well, no real problems(still the same old ones!)I was dx July 26 2009.  Best to everyone, Debrajo

  • minniejan
    minniejan Member Posts: 88
    #39
    Rewriter said:

    How is everyone doing?

    It has been a while since those of us with Stage 1a UPSC have checked in with each other. How is everyone? Next Wednesday, I will be going for my last six-month checkup. It is five years since my surgery; and provided that everything looks good, I will be released to a regular gynecologist and back to once-a-year appointments. I'm anxious about this appointment but probably because I tend to be superstitious. I feel fine and continue to eat an anti-cancer diet and walk about 15 to 20 miles a week.

    If you are in this subgroup of women with UPSC, please check in.

     

    Jill

     

     

     

    checking in

    Hi, Two years NED tomorrow I go for my two year checkup!  Have had some issues (posted another thread yesterday about uncontrollable bleeding) and a new unrelated cancer, but so far I am beating stage 1A UPSC.  A huge congratulations on the five year mark! Do you remember after your two year mark how often did you go back for checks?  I was told I go from every three months to every 4 months until 5 years.  Again, congratulations!

  • Rewriter
    Rewriter Member Posts: 493 Member
    #40
    minniejan said:

    checking in

    Hi, Two years NED tomorrow I go for my two year checkup!  Have had some issues (posted another thread yesterday about uncontrollable bleeding) and a new unrelated cancer, but so far I am beating stage 1A UPSC.  A huge congratulations on the five year mark! Do you remember after your two year mark how often did you go back for checks?  I was told I go from every three months to every 4 months until 5 years.  Again, congratulations!

    Minniejan

    Congratulations on reaching the two-year mark. As you probably know, recurrence risk starts to go down at this point.

    I'm sorry that you are having problems related to the vaginal brachytherapy, but from what I have read, the silver nitrate is effective in stopping the bleeding. I hope you have no further problems and are able to thoroughly enjoy your upcoming vacation.

    I started seeing my gyne-oncologist every six months after two years. 

     

    All the best,

     

    Jill

     

     

  • sunflash
    sunflash Member Posts: 197 Member
    #41
    Hi Jill,
    Big congratulations

    Hi Jill,

    Big congratulations on hitting the 5 year mark! What a great accomplishment for you!

    I was diagnosed with stage 1A in June of 2011, so I'm nearing 2 years since my diagnosis and surgery. Chemo was finished in November of 2011, so I'm about 16 months post chemo. So far...........so good! I feel great and am still working full time as a teacher.

    I can't wait to say I've reached the 5 year mark!! :)

    Thanks for letting us know you're doing well.......it gives me a lot of hope.

     

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