Stage 1A with positive washings

ann0909
ann0909 Member Posts: 1
in Uterine/Endometrial Cancer #1
I am looking for information/advice about others' experiences.

I am 52 and had a total hysterectomy on Jan 5. The cancer had not spread to lymph nodes. It was staged as 1A. Although there were positive washings, my gyn-onc said that the new FIGO guidelines don't take that into account. So, I am stage 1A.

He put me on 3 rounds of brachy and I have completed two. To supplement that he gave me 4 treatment options:

1. chemo
2. Megace
3. Arimidex
4. Do nothing

He felt that chemo is more aggressive than called for, for my case. I am inclined towards option 3.

I am curious to know if anyone else has had the same type of treatment options based on the new FIGO guidelines.

Comments

  • Becky444
    Becky444 Member Posts: 29 Member
    #2
    Stage 1A with Positive Washings
    Ann,

    I was diagnosed after an abnormal pap test/d&c & had debulking hysterectomy for UPSC 9/09. I was stage 111A but only because of positive washings. The radiologist said if I was diagnosed under the new rules, I would be Stage 1A. The treatment that I have had is major debulking surgery, 6 rounds of carboplatin/taxol and 5 brachy therapies. I just had my 1 year CT scan and Chest X-ray. The Chest x-ray came out okay but there is a question about the cecum(large bowel). Evidentially, it is a pouch that food passes through & many times catches in that area. They think that is what it is but they are scheduling a CT colonoscopy within the next couple weeks to ck it out.

    My perspective is I am glad that I went thru the 6 rounds of chemo and brachy therapy. As you can read from the internet and this discussion group, it has a very high recurrence rate. When all is said & done I have some peace of mind knowing that I have done all I could do to prevent it from coming back. The chemo was very doable.

    I wish you the best and please let us know how you are doing. I am sorry for your diagnosis but am glad you have found us. The support is so uplifting and we know what you are going thru.
    Becky
  • Domina
    Domina Member Posts: 62
    #3
    ann0909
    Hi:
    Dx 12/21/10 from tissues from d/c w/hysterscope & transvaginal ultrasound.
    Radical complete hysterectomy, 7 lymph removed.( 1/12/11) Cancer contained in uterus, everything else clear. Some pelvic washings looked suspicious but not malignant. Stage 1A, Grade 2. My gyno-oncologist recommended no chemo, no radiation, no pills. Said based on the path findings & the washings were not positive & no spread that aggressive treatment would do more harm than good. I am confident in her choice, everyone has different circumstances but believe me I will run if anything is out of ordinary, especially during the first five years. God Bless you & everyone for healing, peace & favorable outcomes.
  • nempark
    nempark Member Posts: 681
    #4
    Hi Ann
    I was diagnosed October 2009 stage 1a grade 3 MMMt. Total Hyst. 6 rounds of carbo/platin. Lost my hair, but no other side effects. My first Gyn said to remove everything which I did but she advised me not to do chemo. My second opinion and Surgeon said to be on the safe side total hyst and 6 rounds of chemo. I have no regrets, chemo is definitely doable. I am now 15 months in remission. I wish you all the best and a speedy recovery. May Our great God give you the strength and insight to do what you feel is best for you. Please let us know how you are doing. June
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #5
    nempark said:

    Hi Ann
    I was diagnosed October 2009 stage 1a grade 3 MMMt. Total Hyst. 6 rounds of carbo/platin. Lost my hair, but no other side effects. My first Gyn said to remove everything which I did but she advised me not to do chemo. My second opinion and Surgeon said to be on the safe side total hyst and 6 rounds of chemo. I have no regrets, chemo is definitely doable. I am now 15 months in remission. I wish you all the best and a speedy recovery. May Our great God give you the strength and insight to do what you feel is best for you. Please let us know how you are doing. June

    Do you know the GRADE of your cancer cell type, Ann?
    I think the decision to have chemo at your stage involves what GRADE of cancer you have. If you have an aggressive Grade 3 type of cancer cell, and are in relatively good health with no concurrent morbidities, you should seriously consider doing adjuvent chemo to go after any stray microscopic cancer cells that may have been missed because they are too small to see. If you have a Grade 1 cancer, then you are probably fine with just surgery. But if you have Grade 3 cancer cells, please get a second opinion before you forego adjuvant chemo. Most of the women posting here that were diagnosed Stage 1 and still did chemo had Grade 3 cancer cells.

    The hormone-related options that are on your list really work best for women whose cancer is ER+ or PR+. Can you get them to do a tissue assay to let you know if you are estrogen or progesterone positive if you don't yet know that? I would never rely on a hormone-related therapy if I wasn't ER+ or PR+.


    (((Ann))). It's like having to get a whole new education and vocabulary, isn't it?? "Cancer-speak" is a language all of us wish we hadn't had to get fluent in!
  • sleem
    sleem Member Posts: 92
    #6
    1 A grade 3 USPC
    I am 2 years out as survior. I read and read and continue to do so. The 'sandwich' method is the recommended thought of our time. I did it all chemo/cuff radiation. Never worried about it for me. My CA 125 just rose to 21 for first time on a new methodology review for doing CA 125 so it made it a little higher. The hope for me is a 5 yr. NED. I pray so. Don't regret it. I was in good health otherwise to tolerate treatment. Managed treatment well during the process. I will say I felt better when I was actively receiving treatment. Most cancer surviors do feel cut off from life-line when we can't are just on a 'hold' pattern. Sometimes after or during intercourse, I have bleeding from the thinned tissue of the cervix. This does happen. There is a difference for worry if other types post surgery, treatment happen.
    Good luck....I didn't want Grade 3, but that is draw...it is more agressive. Yet, we start with a plus-big plus with 1 A. God Bless & know it is a up & down roller-coaster ride...even now. Yet, I use every day to best
  • Songflower
    Songflower Member Posts: 608
    #7
    Your decisions
    Dear Ann090,

    I am with Linda, you have to know the grade of your cancer cell. Do you have UPSC? If so I would do chemo. I was a 1a (just barely) with positive washings and relapsed in the peritoneum. I wish I had done peritoneal chemo. I know they don't think the washings count anymore. My cancer has alot of agressive features.

    Chemo gets those stray cells that are microscopic and we can't see. It's hard to do but I believe it gives you the best chance of survival.

    Diane
  • Songflower
    Songflower Member Posts: 608
    #8
    Your decisions
    Dear Ann090,

    I am with Linda, you have to know the grade of your cancer cell. Do you have UPSC? If so I would do chemo. I was a 1a (just barely) with positive washings and relapsed in the peritoneum. I wish I had done peritoneal chemo. I know they don't think the washings count anymore. My cancer has alot of agressive features.

    Chemo gets those stray cells that are microscopic and we can't see. It's hard to do but I believe it gives you the best chance of survival.

    Diane
  • minniejan
    minniejan Member Posts: 88
    #9
    Hello,
    I was diagnosed with
    Hello,

    I was diagnosed with UPSC stage 1A, grade 3 in December 2010. Total hysterectomy. I had chemo (carboplatin and taxol) three rounds 21 days apart. In the weeks between the chemo I had three rounds of brachytherapy. In other words, weekly: chemo, radiation, radiation, chemo, radiation, break, chemo. I finished up on March 22, 2011. Had CA 125 taken yesterday, no results yet, but the CA 125 after the second round of chemo was already down to 7.

    I am not certain about washings, I have a copy of my results, it is not mentioned. (Another question to write down for my gynecologic oncologist.) I went to Hospital at the University of Pennsylvania in Philadelphia.

    Has anyone else had this exact protocol? I did not know about the sandwiching of radiation between 6 rounds of chemo prior to starting my therapies was optimal.

    MinnieJan
  • Becky444
    Becky444 Member Posts: 29 Member
    #10
    minniejan said:

    Hello,
    I was diagnosed with
    Hello,

    I was diagnosed with UPSC stage 1A, grade 3 in December 2010. Total hysterectomy. I had chemo (carboplatin and taxol) three rounds 21 days apart. In the weeks between the chemo I had three rounds of brachytherapy. In other words, weekly: chemo, radiation, radiation, chemo, radiation, break, chemo. I finished up on March 22, 2011. Had CA 125 taken yesterday, no results yet, but the CA 125 after the second round of chemo was already down to 7.

    I am not certain about washings, I have a copy of my results, it is not mentioned. (Another question to write down for my gynecologic oncologist.) I went to Hospital at the University of Pennsylvania in Philadelphia.

    Has anyone else had this exact protocol? I did not know about the sandwiching of radiation between 6 rounds of chemo prior to starting my therapies was optimal.

    MinnieJan

    Chemo & Brachy Therapy
    MinnieJan,

    I was diagnosed with UPSC Stage 3A, Grade 1, in 8/09 and had major debulking surgery 9/09. I was told I had a few cells in my cytology and would be a Stage 1B if diagnosed now.

    I had six rounds of carbo/taxol every three weeks starting in the first of 10/09. I also had 5 brachy therapies between treatments in 11/09. My ono/gyno was very insistent on having those brachy therapies at the beginning of my chemo. I think she would have liked them sooner in October but when she thought about it, she thought it would be okay.

    I am doing well and trying to take care of myself. It is still on my mind a lot. I have some neuropathy in my feet but I don't take anything for it. It certainly is a roller coaster ride emotionally. I hope you continue to do well.

    Many blessings to all the UPSC sisters...you are remembered in my prayers each day.

    Becky
  • Rewriter
    Rewriter Member Posts: 493 Member
    #11
    minniejan said:

    Hello,
    I was diagnosed with
    Hello,

    I was diagnosed with UPSC stage 1A, grade 3 in December 2010. Total hysterectomy. I had chemo (carboplatin and taxol) three rounds 21 days apart. In the weeks between the chemo I had three rounds of brachytherapy. In other words, weekly: chemo, radiation, radiation, chemo, radiation, break, chemo. I finished up on March 22, 2011. Had CA 125 taken yesterday, no results yet, but the CA 125 after the second round of chemo was already down to 7.

    I am not certain about washings, I have a copy of my results, it is not mentioned. (Another question to write down for my gynecologic oncologist.) I went to Hospital at the University of Pennsylvania in Philadelphia.

    Has anyone else had this exact protocol? I did not know about the sandwiching of radiation between 6 rounds of chemo prior to starting my therapies was optimal.

    MinnieJan

    Stage 1a UPSC
    I was diagnosed with Stage 1a UPSC in April 2008, based on TAH that included removal of 29 lymph nodes and negative washings. My cancer, which was a mixture of UPSC and endometrioid adenocarcinoma, was confined to a small polyp.

    My very trusted gyne-oncologist recommended 6 rounds of carboplatin/taxol followed by 5 weekly brachytherapy sessions, completed in December 2008. I am so thankful that I have been NED ever since.

    From what I have read, there is still discussion about which cases are better treated with the sandwich approach. I feel comfortable having had all of my chemo first; but there are new protocols all of the time that can better address individual cases.

    Jill

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