Anyone with Stage 1a UPSC?

Rewriter
Rewriter Member Posts: 493 Member
edited July 2011 in Uterine/Endometrial Cancer #1
When I was diagnosed in March 2008, I began extensive research to determine what I believed to be the most effective treatment and the likely prognosis for this subset of uterine papillary serous carcinoma. Some studies indicate that observation could be considered for this stage, but the most recent study--at MD Anderson--quoted one of the researchers as saying that she would never feel comfortable making this recommendation.

Most studies reported that women with stage 1a who underwent chemotherapy had a 100 percent progression-free survival rate. Of course, most studies have been small; and studies earlier than 2005 are not reliable.

What is the experience of others who have this diagnosis? I have been NED for almost three years (I had chemotherapy and five brachytherapy treatments, which ended in November 2008); and my understanding is that once we hit the two-year NED mark, the recurrence rate drops sharply. Nevertheless, I live as if the cancer is just waiting to pounce again.

I am vigilant about living an anti-cancer life--eating an almost exclusively organic vegetarian anti-inflammatory diet, with plenty of turmeric/olive oil/black pepper added to my food; exercising several times a week; "trying" to keep stress out of my life; laughing often. This is what I will do for the rest of my life, and I would love to be more confident that I can live a long life.

I know I am probably very lucky; and my heart goes out to those women here whose struggles are so much more difficult than mine. This message is meant only for those women who might be in my position.

Love to all,

Jill
«13

Comments

  • california_artist
    california_artist Member Posts: 816 Member
    #2
    Jill
    About the recurrence time for UPSC. If you go to this url and click on the center diagram, you will see a chart on recurrences for outwards up to ten years. UPSC doesn't level off til it gets to the five year mark. We have 1-2 years left to really be diligent. I think, so far we are doing a bang up job.

    Love ya,

    Claudia

    someone posted about her UPSC being grade one, I didn't think that was possible, did I miss something????
  • Rewriter
    Rewriter Member Posts: 493 Member
    #3
    california_artist said:

    Jill
    About the recurrence time for UPSC. If you go to this url and click on the center diagram, you will see a chart on recurrences for outwards up to ten years. UPSC doesn't level off til it gets to the five year mark. We have 1-2 years left to really be diligent. I think, so far we are doing a bang up job.

    Love ya,

    Claudia

    someone posted about her UPSC being grade one, I didn't think that was possible, did I miss something????

    Claudia
    If you see this, please post the URL. Of course, I plan to be diligent anyway.

    My understanding is that UPSC is always grade 3.
  • california_artist
    california_artist Member Posts: 816 Member
    #4
    Rewriter said:

    Claudia
    If you see this, please post the URL. Of course, I plan to be diligent anyway.

    My understanding is that UPSC is always grade 3.

    jill
    http://www.ncbi.nlm.nih.gov/pubmed/16495918


    Ah??? dah????
  • Rewriter
    Rewriter Member Posts: 493 Member
    #5
    california_artist said:

    jill
    http://www.ncbi.nlm.nih.gov/pubmed/16495918


    Ah??? dah????

    Dates of study
    What do you think about the fact that "Demographic, pathologic, treatment, and survival information were obtained from the Surveillance, Epidemiology, and End Results Program from 1988 to 2001"? Could it be that staging, treatment, and survival information has changed since that time?
  • california_artist
    california_artist Member Posts: 816 Member
    #6
    Jill
    After doing some research, and finding that carbo was introduced in the '80's and Taxol had been around prior to that, it seems that treatment has not changed for this cancer for over 25 years, which in my estimation, is totally unconscionable.

    Why don't they try something different.

    You know, the insurance companies and drug companies have got to keep their hands and their profit motives off the treatments for things as important as cancer.

    I am frankly quite sick of the whole thing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    I am sick and tired of their games and motives!!!!!!!!!!!!!!!!!!


    I quit!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
  • Rewriter
    Rewriter Member Posts: 493 Member
    #7
    california_artist said:

    Jill
    After doing some research, and finding that carbo was introduced in the '80's and Taxol had been around prior to that, it seems that treatment has not changed for this cancer for over 25 years, which in my estimation, is totally unconscionable.

    Why don't they try something different.

    You know, the insurance companies and drug companies have got to keep their hands and their profit motives off the treatments for things as important as cancer.

    I am frankly quite sick of the whole thing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    I am sick and tired of their games and motives!!!!!!!!!!!!!!!!!!


    I quit!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    Claudia
    I hear ya! I'm going to start putting my energy toward getting my onc and his colleagues to read this board. THEN, I am going to start a letter-writing campaign. THEN, I am going to see what it takes to find funding for a study. I haven't got a pot to piss in financially, what with being freelance and unable to work for a while; but I have a mouth and a brain, and I intend to use both.
  • minniejan
    minniejan Member Posts: 88
    #8
    1A as well
    Jill,

    I was diagnosed Dec. 2010 USPS grade 3 upon biopsy, and after staging on Dec. 29 was determined to be 1A. I had three chemo treatments (carbo and taxol) and three brachytherapy treatments. My CA 125 three months after treatment was at 6 in June! My pap was clean. My next set of tests will be in September, in the meantime I am leading my life to the fullest, going on three trips in three months and enjoying my life fully. I am lucky I can do this, I admit. I was so low when diagnosed, coming off of taking care of an elderly mother after a couple of years of absolute "hell"

    Unfortunately I am not vigilant about living an anti-cancer lifestyle but my outlook is great, I feel I have beat this and I think that a positive outlook is part of the battle, so hopefully that will counteract my non vigilant cancer lifestyle. My personal thoughts are that I will eat as healthy as permits, but I did that before diagnosis as well.

    Your message struck such a cord for me that I felt like I had to answer. I too feel lucky this was caught early. I was told I would be followed every 3 months for two years, and after that probably every 3-6 months for the rest of my life. I plan on it being a long long life.

    MinnieJan
  • Rewriter
    Rewriter Member Posts: 493 Member
    #9
    minniejan said:

    1A as well
    Jill,

    I was diagnosed Dec. 2010 USPS grade 3 upon biopsy, and after staging on Dec. 29 was determined to be 1A. I had three chemo treatments (carbo and taxol) and three brachytherapy treatments. My CA 125 three months after treatment was at 6 in June! My pap was clean. My next set of tests will be in September, in the meantime I am leading my life to the fullest, going on three trips in three months and enjoying my life fully. I am lucky I can do this, I admit. I was so low when diagnosed, coming off of taking care of an elderly mother after a couple of years of absolute "hell"

    Unfortunately I am not vigilant about living an anti-cancer lifestyle but my outlook is great, I feel I have beat this and I think that a positive outlook is part of the battle, so hopefully that will counteract my non vigilant cancer lifestyle. My personal thoughts are that I will eat as healthy as permits, but I did that before diagnosis as well.

    Your message struck such a cord for me that I felt like I had to answer. I too feel lucky this was caught early. I was told I would be followed every 3 months for two years, and after that probably every 3-6 months for the rest of my life. I plan on it being a long long life.

    MinnieJan

    MinnieJan
    Thank you for responding. I, too, plan on living a long, long life; and the diet I am on--in addition to helping me feel that I am protecting myself against recurrence--has improved my overall health dramatically.

    I would love to have a thread that is specific to those of us with UPSC stage 1a, as I think that there are variables that apply only to us.

    By the way, right before my diagnosis, I had spent a number of hellish years caring for my mother. It's interesting to consider the impact of that stress on my own health.

    Jill
  • Pat51
    Pat51 Member Posts: 130
    #10
    Jill
    I was diagnosed in Feb., 2011 with UPSC stage 1B (old FIGO chart) or stage 1A (new Figo Chart). I have just completed 6 chemo treatments and I am now doing 3 brachytheraphy radiation treatments. I was just told that I would not get a CT scan for another 6 months. I am going to try to maintain a healthier eating style, but my oncologist says that there is not specific diet that will help.

    I believe that I will always live worrying about recurrance. My doctor said that I have about a 20% chance of recurrance, but I have no idea where he got those statistics from. This is a better prognosis than I have found in written reports. I also had a very high stress life just before diagnosis. My husband is a stage 4 melanoma patient. I will be going back to work very soon and hope that I can balance the job and stress. It is great that you have been NED for 3 years!! I hope that you have many many more years of a cancer free life.

    Pat
  • sleem
    sleem Member Posts: 92
    #11
    Time for years a ? Stage 1 A Grade 3 UPSC
    My doctor stated that years of survival can be counted 2 ways: from surgery diagnosis or last chemo. That we should always look at study or chart from when this counting starts. If I count from my surgery, it will be three years this Sept. or from my last chemo, Jan. 12'. My CA has been rising since last Nov. 2010 and jumped at my March 2011. I too and hoping my CA 125 is still under the 35 CA 125 normal range this coming Sept. and that it has stablized and not jumped again. I worry too and feel very concerned that my CA 125 left the teens for the first time 6 months ago.
    CA 125's have different makers and different 'normal' ranges. I had a test locally which had a normal range of 21 and mine was 16 with that one. Still my doctors have not set alarms off. I understand about false + and - readings from it and that this test is for ovarian & not really for uterine. I hope I am still NED this Sept through Jan. 12, either way, some would say 3 years NED. I too wish everyone could have been this stage at their time of diagnosis. My first doctor kept me almost 9 months from a correct diagnosis. My current Dr. said my own knowledge got me there early & helped improved my chances.
    Keep up the news about nutrition and anything more that helps all of UPSC women.
    Truly grateful for all your help.
  • minniejan
    minniejan Member Posts: 88
    #12
    Rewriter said:

    MinnieJan
    Thank you for responding. I, too, plan on living a long, long life; and the diet I am on--in addition to helping me feel that I am protecting myself against recurrence--has improved my overall health dramatically.

    I would love to have a thread that is specific to those of us with UPSC stage 1a, as I think that there are variables that apply only to us.

    By the way, right before my diagnosis, I had spent a number of hellish years caring for my mother. It's interesting to consider the impact of that stress on my own health.

    Jill

    me too
    Jill,
    I spent two years caring for my mother, going back and forth 300 miles from home to do it along with siblings who lived near my mother. She needed total 24 hour care, both physical and emotional. Three weeks prior to my diagnosis we were down to two siblings out of four "still standing." I was one of them and along with my sister we decided to place my mother in a nursing home. Then my diagnosis. Yes, I totally agree about stress and its impact.

    MinnieJan
  • cheerful
    cheerful Member Posts: 261 Member
    #13
    Pat51 said:

    Jill
    I was diagnosed in Feb., 2011 with UPSC stage 1B (old FIGO chart) or stage 1A (new Figo Chart). I have just completed 6 chemo treatments and I am now doing 3 brachytheraphy radiation treatments. I was just told that I would not get a CT scan for another 6 months. I am going to try to maintain a healthier eating style, but my oncologist says that there is not specific diet that will help.

    I believe that I will always live worrying about recurrance. My doctor said that I have about a 20% chance of recurrance, but I have no idea where he got those statistics from. This is a better prognosis than I have found in written reports. I also had a very high stress life just before diagnosis. My husband is a stage 4 melanoma patient. I will be going back to work very soon and hope that I can balance the job and stress. It is great that you have been NED for 3 years!! I hope that you have many many more years of a cancer free life.

    Pat

    Hi Pat51:

    I too was diagnosed in February 2011 with UPSC. I had surgery on February 1, 2011. I started with chemo in mid April and finished all my chemo treatments the end of August for a total of 6 rounds. I then had 3 rounds of radiation and finished in mid October. I was diagnosed with Stage 1 according to my radiologist and he said my UPSC was nothing more than a large polyp. He said I have an 80 to 90% chance of survival.

    I was wondering about the chance of reoccurrence and have been worried about it as well. I know that the chance of reoccurrence is the highest for the first 2 years and then it drops off. I know this is a very aggressive cancer. My oncologist mentioned to me that hopefully my cancer will not return once I complete my treatments. I see my oncologist again for a follow-up the end of January 2012. I will be nervous and will hope for the best during the exam. I probably will have a cat scan in early spring of 2012. I already have had 3 cat scans and they show NO metasis to any other organs which is very good news.

    I have a friend with Stage 2 UPSC and she has not had a reoccurrence at all and she finished all her treatments over 3 years ago so I am very encouraged and hopeful.

    I joined the UPSC website in April. Please keep in touch. I am 60 years old (diagnosed at age 59 in February) and live in Delaware County, PA.

    Cheerful
  • fanniemay
    fanniemay Member Posts: 53
    #14
    minniejan said:

    me too
    Jill,
    I spent two years caring for my mother, going back and forth 300 miles from home to do it along with siblings who lived near my mother. She needed total 24 hour care, both physical and emotional. Three weeks prior to my diagnosis we were down to two siblings out of four "still standing." I was one of them and along with my sister we decided to place my mother in a nursing home. Then my diagnosis. Yes, I totally agree about stress and its impact.

    MinnieJan

    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.
  • fanniemay
    fanniemay Member Posts: 53
    #15
    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
  • Rewriter
    Rewriter Member Posts: 493 Member
    #16
    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

    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
  • LizGrrr
    LizGrrr Member Posts: 127 Member
    #17
    Pat51 said:

    Jill
    I was diagnosed in Feb., 2011 with UPSC stage 1B (old FIGO chart) or stage 1A (new Figo Chart). I have just completed 6 chemo treatments and I am now doing 3 brachytheraphy radiation treatments. I was just told that I would not get a CT scan for another 6 months. I am going to try to maintain a healthier eating style, but my oncologist says that there is not specific diet that will help.

    I believe that I will always live worrying about recurrance. My doctor said that I have about a 20% chance of recurrance, but I have no idea where he got those statistics from. This is a better prognosis than I have found in written reports. I also had a very high stress life just before diagnosis. My husband is a stage 4 melanoma patient. I will be going back to work very soon and hope that I can balance the job and stress. It is great that you have been NED for 3 years!! I hope that you have many many more years of a cancer free life.

    Pat

    Stage 1a
    Got my diagnosis October 2011, had surgery 2 weeks ago, and my incisions infected so we haven't even started talking about chemo/radiation- heck we don't even know when I can get the staples out! Nice to know I'm not alone in this thing and would love to keep in touch with all of you

    Liz in Dallas, TX
  • Hilajoan
    Hilajoan Member Posts: 21
    #18
    LizGrrr said:

    Stage 1a
    Got my diagnosis October 2011, had surgery 2 weeks ago, and my incisions infected so we haven't even started talking about chemo/radiation- heck we don't even know when I can get the staples out! Nice to know I'm not alone in this thing and would love to keep in touch with all of you

    Liz in Dallas, TX

    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.
  • Pat51
    Pat51 Member Posts: 130
    #19
    cheerful said:

    Hi Pat51:

    I too was diagnosed in February 2011 with UPSC. I had surgery on February 1, 2011. I started with chemo in mid April and finished all my chemo treatments the end of August for a total of 6 rounds. I then had 3 rounds of radiation and finished in mid October. I was diagnosed with Stage 1 according to my radiologist and he said my UPSC was nothing more than a large polyp. He said I have an 80 to 90% chance of survival.

    I was wondering about the chance of reoccurrence and have been worried about it as well. I know that the chance of reoccurrence is the highest for the first 2 years and then it drops off. I know this is a very aggressive cancer. My oncologist mentioned to me that hopefully my cancer will not return once I complete my treatments. I see my oncologist again for a follow-up the end of January 2012. I will be nervous and will hope for the best during the exam. I probably will have a cat scan in early spring of 2012. I already have had 3 cat scans and they show NO metasis to any other organs which is very good news.

    I have a friend with Stage 2 UPSC and she has not had a reoccurrence at all and she finished all her treatments over 3 years ago so I am very encouraged and hopeful.

    I joined the UPSC website in April. Please keep in touch. I am 60 years old (diagnosed at age 59 in February) and live in Delaware County, PA.

    Cheerful

    Cheerful
    Our stories sound very similiar as well as being very close in time. My tumor was more than a polyp but confined to the inner 1/2 of the uterine wall. Stage 1B by the old FIGO chart and stage 1A by the new charts. I finished chemo in July and radiation in August. I am also 60 years old. I was 59 when I was diagnosed. I live in Wisconsin. UPSC is a difficult diagnosis to handle. I would very much like to stay in contact with you. I have not yet had any follow up tests. I think that I may be scheduled for a CT in late January. My next oncology appointment is Dec. 1 so I will know more then.

    Pat
  • cheerful
    cheerful Member Posts: 261 Member
    #20
    Pat51 said:

    Cheerful
    Our stories sound very similiar as well as being very close in time. My tumor was more than a polyp but confined to the inner 1/2 of the uterine wall. Stage 1B by the old FIGO chart and stage 1A by the new charts. I finished chemo in July and radiation in August. I am also 60 years old. I was 59 when I was diagnosed. I live in Wisconsin. UPSC is a difficult diagnosis to handle. I would very much like to stay in contact with you. I have not yet had any follow up tests. I think that I may be scheduled for a CT in late January. My next oncology appointment is Dec. 1 so I will know more then.

    Pat

    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)
  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    #21
    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.

    carcinosarcoma (old MMMT)
    Carcinosarcoma is what malignant mixed mullierm tumor or MMMT use to be called. It is different than the UPSC but still concidered Uterine Cancer. I was found to have carcinosarcoma in March this year. Already had the surgery and 6 rounds of Carbo/Taxel Chemo treatment. I did not have any radiation. I have limited knowledge but I would possibly get a second opinion because it is treatable. I was a stage 3C1. Not sure of the grade. I am in Dallas, TX and going to the UT Southwestern Cancer Center which is NCI regonized. You can ask for an assay of the tumor and it should tell which Chemo it will respond too. Learned that information on this site from several ladies. I did not have that done because I did not know that I could ask for it.

    Bottom line is ask lots of questions and if you do not like the answers ask for a second opinion. Will add you to my pray list for all the women on this site. trish

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