Any UPSC 1a who did observation rather than chemo/radiation

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  • Delanie
    Delanie Member Posts: 3

    schedule set

    Got my chemo schedule today! Looks like it will be an all day affair - 9A to 7P. I will get a pick line each time to save the veins in arm, then have labs, then see the doctor and finally at 2 p.m. begin the chemo. After the first chemo, will set up bracky schedule. Can't say that I am excited about this, but I will have it all done by May 18. Again, thanks to all you who take the time to send the information and good wishes. It means much to share and learn from each other. Here we go !!!!

    your schedule

    Donna - this being July, I wondered how everything went, you thought you'd be through May 18.  I am just starting the process, trying to obtain as much info as possible from this site.  Hope you are well.

  • Nellasing
    Nellasing Member Posts: 528 Member
    Delanie said:

    your schedule

    Donna - this being July, I wondered how everything went, you thought you'd be through May 18.  I am just starting the process, trying to obtain as much info as possible from this site.  Hope you are well.

    Hey there Delanie

    See you peeping in and wanted to say Hi and welcome!  Please feel free to post a question in the main forum so you can get as many responses as possible- we're all here to share the journey. 

    If you aren't ready for that I'll just share that I was diagnosed April 4, 2016 and had surgery April 28, started chemo June 3rd and finished Sept. 21, 2016.  I had a little delay because my neutophils dropped. 

    There is a search at the top and you can find a thread called "Ladies Going Through Chemo" which is full of info.

    Let us know how you are doing.  (((HUGS)))

  • Delanie
    Delanie Member Posts: 3
    Nellasing said:

    Hey there Delanie

    See you peeping in and wanted to say Hi and welcome!  Please feel free to post a question in the main forum so you can get as many responses as possible- we're all here to share the journey. 

    If you aren't ready for that I'll just share that I was diagnosed April 4, 2016 and had surgery April 28, started chemo June 3rd and finished Sept. 21, 2016.  I had a little delay because my neutophils dropped. 

    There is a search at the top and you can find a thread called "Ladies Going Through Chemo" which is full of info.

    Let us know how you are doing.  (((HUGS)))

    Hi, and thanks.  I've just

    Hi, and thanks.  I've just been perusing the site, trying to learn to navigate and see what information is available.  I have no diagnosis, waiting for test results. I'm going to look for that thread.

  • Nellasing
    Nellasing Member Posts: 528 Member
    Delanie said:

    Hi, and thanks.  I've just

    Hi, and thanks.  I've just been perusing the site, trying to learn to navigate and see what information is available.  I have no diagnosis, waiting for test results. I'm going to look for that thread.

    Hope that results come back with ZERO cancer!

    That would be so awesome and it's happened several times since I've found these wonderful ladies- a new name will pop on and be waiting and come back and say all clear- no one cheers louder that we do Laughing  For the others, we join them on their journey and look forward to each update.  (((HUGS)))

  • sshhaarrii
    sshhaarrii Member Posts: 38 Member
    Donna Faye,

    Donna Faye,

    Sorry to hear about the blood clots, another punch. Me too, UPSC 1A with a PE blood clot. Blood thinner shots twice a day. The belly looks a mess, after a few month of those. I'm going on 8 months of those darn things. I was told that I would need them for 1 year. There may be other benefits to those injections, though. I was reading about some studies on the Lovenox injections and there is evidence that suggest the drug may obstruct the cancer in your blood. I think about that and it makes those injections easier. 

    Sounds like you're heading towards the end of frontline treatment, and what a relief! Remember to take good care of yourself. Try not to over do things. I started feeling pretty darn good a couple months after treatment and ended up over doing things, work, family and everything else, got myself sick, knocked me down pretty hard. I just wanted to be my old self again, like everyone else and I think I can be, but I have a little way to go yet...lol.

    Take care

  • dgrdalton
    dgrdalton Member Posts: 161 Member
    Chemo decision changed to observation

    Reposting from another thread I posted this on yesterday. My gyn/oncologist had reviewed my pathology reports. I was diagnosed as stage 1A uterine papillary serous. He said the cancer was only found in a polyp in the uterus. He had decided instead of chemo to go with observation. The 'cancer board' updated their recommendations in January of this year and my diagnosis fell into the category of choice of observation or chemo. June 2nd he told me I would need chemo. July 7th he reviewed my pathology reports and decided to go with observation. He is a highly respected gynecologic oncologist in our area (still 90 miles from me.) In 2 months I will get a baseline CT, CA-125 and pelvic exam. My CA-125 was normal before surgery.

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    sshhaarrii and dgrdalton

    Found both of your posts very interesting. Yes, 2 more radiation and all done. Have accpeted the BT shots as must do for as long as needed. Am trying to take the future one day at a time and not overdo. It is hard after so long a time with app'ts. all the time and feeling tired, but will behave. I do hope, dgrdalton, you will keep posting as to your outcome with observation. I leaned that way so much, but docs here would not offer me any encouragement so did the treatment and now that it is done, hope they were right. My treatment with chemo was not as good as hoped, but much of that was a problem with one of the oncology team nurses who made several mistakes in instructions to me.  Thankfully, there was always another person who cought the problem and set things right. I joke that in spite of her, I survived! Hope everyone will enjoy the rest of summer and we will all be NED's for years!!!

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    After 7 months, sky is bluer !

    Just a note to all my wonderful friends on this site... I have finally begun to feel like my self before UPSC! Jan. - July, was in some kind of treatment; then had an allergy attack that brought PND and coughing for 2 weeks. Got new meds as had not had any allergy since 2012, cleaned the house and bought an air purfier. Thursday I began to feel so much better and have had 4 really good days when nothing bothered me but needing a nap. I write this to say to all those just starting down this road, hang in there, better days do come. Blood thinner shots are now routine like brushing my teeth, and hopefully I can come off them in Sept, or Nov.  Just thankful the clots were found before damage was done. And it was all the encourageent I got from many of you that kept me going.

    I see the hematologist tomorrow and then the oncologist and radiologist in Sept. as they want 3 mo. check ups for now. I am seeing a physical trainer tomorrow for an exercise routine. Need to rebuild my muscles and want to try and do something with this post hyseterectory stomach pouch. Any advice on that ?

    My hopes and prayers are with every woman on this site. So glad we can share our fears and hopes so honestly.  Hugs, Faye

  • Meg08
    Meg08 Member Posts: 3

    Thanks

    This is what I am looking to hear. At 77 seems rather daunting to go through treatment and not have a few good years.

    I have grandsons as well and we ride horses. Thanks so much.

    DF

    My mom had a complete

    My mom had a complete historectamy 3 years ago, she did not do chemo or radiation as her surgeon didn't recommend it, and she has been fine. I don't know that I would recommend it, only BC it is such an aggressive cancer... we are about to get results from her latest scan this week. Praying 

  • dgrdalton
    dgrdalton Member Posts: 161 Member
    Update on my chemo changed to observation

    Had my first follow-up since the no chemo decision (UPSC Stage 1A Grade 3.) My CT scan was clear and my CA-125 went from 14.3 before surgery to 8.3 on Monday. I had a great talk with my gyn/onc. He said we could do chemo if I felt we needed to, but we had caught it so early and the cancer was confined to the uterus and had only invaded the myometrium by less than 1 mm. We decided he will see me every 6 weeks the rest of the year. I feel good about the decision and feel good physically. Appreciate you ladies!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    edited September 2017 #132
    dgrdalton said:

    Update on my chemo changed to observation

    Had my first follow-up since the no chemo decision (UPSC Stage 1A Grade 3.) My CT scan was clear and my CA-125 went from 14.3 before surgery to 8.3 on Monday. I had a great talk with my gyn/onc. He said we could do chemo if I felt we needed to, but we had caught it so early and the cancer was confined to the uterus and had only invaded the myometrium by less than 1 mm. We decided he will see me every 6 weeks the rest of the year. I feel good about the decision and feel good physically. Appreciate you ladies!

    Great News DGR! I hope you

    Great News DGR! I hope you dance with NED forever!

    Love and Hugs,

    Cindi

  • hopeful56
    hopeful56 Member Posts: 73
    SC Stage 1a

    I was glad to have found  this thread for stage 1A SC.  That is what I am staged at with only microscopic cells.  I took the advice of my surgeon/oncl to have chemo due to type of cancer.  I start round 1 of chemo out of the 3/4 he is suggesting this coming Tuesday 9/19/. I have been reading so many posts about reactions to chemo, plus reading on the web.  It really gets overwhelming and I am right now at the anxious, nervous stage.  These posts are really giving me support and courage.

    I posted before on this site and appreciate all the support and insight from everyone.

    As always all of you are in my heart and prayers as we go along this journey.

    Sandra

  • Nellasing
    Nellasing Member Posts: 528 Member
    dgrdalton said:

    Update on my chemo changed to observation

    Had my first follow-up since the no chemo decision (UPSC Stage 1A Grade 3.) My CT scan was clear and my CA-125 went from 14.3 before surgery to 8.3 on Monday. I had a great talk with my gyn/onc. He said we could do chemo if I felt we needed to, but we had caught it so early and the cancer was confined to the uterus and had only invaded the myometrium by less than 1 mm. We decided he will see me every 6 weeks the rest of the year. I feel good about the decision and feel good physically. Appreciate you ladies!

    That is excellent news!

    dgr you made my day- so happy you are clear!  It is always so good if the body has the chance to heal without all the side effects of drugs.  Glad you a feeling good mentally and physically.  (((HUGS)))

  • dgrdalton
    dgrdalton Member Posts: 161 Member
    Blessed and Thankful

    Thanks!

    Sandra, will be praying that you handle the chemo well. Reading through the ladies going through chemo thread helped calm my nerves when I thought I was going to have chemo. All I have to give is my love and prayers!

    Donna

  • hopeful56
    hopeful56 Member Posts: 73
    dgrdalton said:

    Blessed and Thankful

    Thanks!

    Sandra, will be praying that you handle the chemo well. Reading through the ladies going through chemo thread helped calm my nerves when I thought I was going to have chemo. All I have to give is my love and prayers!

    Donna

    Thank you Donna.

    Thank you Donna.

    It means a lot to me.

    Sandra

  • dgrdalton
    dgrdalton Member Posts: 161 Member
    My good feelings didn’t last

    i did more research and the more I thought about it, the less confidence I had in my oncologist and his change of mind on treatment (that I would need chemo because of the aggressive nature). Then 5 weeks later telling me (and my husband) the cancer Was confined to a polyp (first we had heard that) so I only needed observation. Then 2 months later saying no it wasn’t confined to a polyp, but it had barely invaded the myometrium. He also changed from pelvic exam every 3 months to adding in CT scan, CA-125 and visits every 6 weeks. 

    My husband and I decided it was time for a 2nd opinion. I saw a female gyn/onc in St, Louis this past Monday. Theyve already got me scheduled for chemo in two weeks (3 rounds) and then 6 brachytherapy. I feel that this adjuvant therapy will help me feel like I’ve done all I can.

    Appreciate all the advice and support from this group!

    Donna 

  • ConnieSW
    ConnieSW Member Posts: 1,677 Member
    dgrdalton said:

    My good feelings didn’t last

    i did more research and the more I thought about it, the less confidence I had in my oncologist and his change of mind on treatment (that I would need chemo because of the aggressive nature). Then 5 weeks later telling me (and my husband) the cancer Was confined to a polyp (first we had heard that) so I only needed observation. Then 2 months later saying no it wasn’t confined to a polyp, but it had barely invaded the myometrium. He also changed from pelvic exam every 3 months to adding in CT scan, CA-125 and visits every 6 weeks. 

    My husband and I decided it was time for a 2nd opinion. I saw a female gyn/onc in St, Louis this past Monday. Theyve already got me scheduled for chemo in two weeks (3 rounds) and then 6 brachytherapy. I feel that this adjuvant therapy will help me feel like I’ve done all I can.

    Appreciate all the advice and support from this group!

    Donna 

    Good decision, Donna

    Did she say why only 3 chemo?  Most of us had 6

  • dgrdalton
    dgrdalton Member Posts: 161 Member
    I think it had to do with the

    I think it had to do with the Stage 1A Grade 3 confined to uterus with 0.5 mm invasion. My ct on 9/11 was clear. CA125 was down from 14.3 to 8.3 and the pelvic exam she did looked good. And it’s been almost 5 months now since my surgery. 

  • ConnieSW
    ConnieSW Member Posts: 1,677 Member
    My diagnosis,

    type, stage and grade, was the same as yours and I had 6 treatments. I finished over 5 years ago so maybe something has changed. I would ask your dr. 

  • hopeful56
    hopeful56 Member Posts: 73
    edited October 2017 #141
    I was diagnosed stage 1a with

    I was diagnosed stage 1a with SC.  Mine was microscopic diagnosed with my hysteroscopy.   After my hysterectomy my surgeon/oncologist recommended 3 to 4 treatments of taxol/carbo.  I have just finished my 2nd round of chemo.  So far side effects have been minimal with tiredness/aches/pains in the muscles joints.  I am also working.  Even though my biopsies from my hysterectomy showed no cancer cells, I still went ahead with the treatment.  This is such an aggressive cancer and I don't want it to come back.  It is your decision, I hope whatever you decide, it works out for you.