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UPSC Stage 1 Treatment

Susie2's picture
Susie2
Posts: 15
Joined: Nov 2017

Hello All,

Sorry for this 1st time, lengthy post. I've gathered so much helpful information from reading and rereading many of your posts these last several weeks. I wanted to share a bit of information that might help others. I hope I am reading it correctly. Please chime in if I'm missing something!

By ways of background, I was diagnosed with Stage 1A UPSC. Post hysterectomy showed some residual, but no myometrial invasion. All else negative and clean. Serous cells found on one ovary were interpreted as a separate primary cancer, not a spread of the UPSC (which would have elevated me to stage iii upsc).

I struggled with deciding treatment options. My gyn/oncologist strongly recommended 6 rounds chemo followed by 3 brachytherapy treatments. My medical/chemo oncologist told me that 2017 NCCN guidelines indicate "observation only" is an appropriate treatment for this stage. He said I could choose chemo, but the data is inconclusive about effectiveness at this stage.

Needless to say, this put me in a tough spot. I've read past posts on here from others who were faced with this same decision. In the end, and with my family's help, I decided on chemo & radiation. Personally, I never wanted to look back and think I didn't do all I could to prevent recurrence. I've completed my first cycle of chemo, and so far so good.

Recently, I stumbled on this NCCN update: https://www.nccn.org/about/news/ebulletin/ebulletindetail.aspx?ebulletinid=1232 . If I'm reading this correctly, some of the 2017 NCCN guidelines for treating UPSC have been updated for 2018. In particular, these two updates caught my eye, and I thought I'd share in case others are in the process of deciding treatment options. Ultimately, everyone makes the decision that's right for them. For me, reading this update helped reassure me that at least my choice of treatment appears to be no longer 'contrary' to NCCN guidelines.

Adjuvant Treatment

  • For Stage IA (<50% myometrial invasion) grade 3 tumors with adverse risk factors, “Observe” removed as an option and revised: “Vaginal brachytherapy and/or EBRT ± systemic therapy (category 2B).”  (ENDO-4)
  • For Stage IB (≥50% myometrial invasion) Grade 3 tumors with no adverse risk factors, “Observe” removed as an option and revised: “Vaginal brachytherapy and/or EBRT ± systemic therapy (category 2B)” (ENDO-4)
  • High-Risk Carcinoma Histologies (ENDO-11)
    • Previously this section was called “Serous or Clear Cell Carcinoma or Carcinosarcoma of the Endometrium.”
    • “Undifferentiated/dedifferentiated carcinoma” added to the list of high-risk histologies.
    • Adjuvant Treatment
      • For Stage IA, the option “Chemotherapy ± vaginal brachytherapy” is now listed as preferred.

 

 

 

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1441
Joined: Jun 2015

Hi Susie2, First of all.... Welcome! I'm glad you found us. I hope all of your chemo treatments are not too bad for you. Like you, I was Stage 1A Grade 3 and I did 6 rounds of chemo and brachy therapy. Second.... THANKS for sharing that information. It is such a hard decision and seeing changes in the recommendation I think will help make decisions easier. I know I went back and forth for months on getting the brachy.

Please come back and let us know how you are doing. And, if you haven't found them, the following threads might be helpful for you:

'Ladies Going Through Chemo'

'Let's Talk About Radiation'

Love and Hugs,

Cindi

Abbycat2's picture
Abbycat2
Posts: 637
Joined: Feb 2014

some time ago.  To go to this post, under Uterine Cancer type in the title of my post: Research study on UPSC.I think the research was interesting and the study explored survival rates based on stage/treatment.

Best wishes to you,

Cathy

MAbound
Posts: 714
Joined: Jun 2016

Hi Susie!  Wow!  First post and already you are sharing some wonderful information that I'm sure others that come here will find very helpful. Sorry you had to find us, but so glad you did. Remember, this is a no apology zone so the word sorry can be eliminated from you vocabulary!  We like long posts! 

Susie2's picture
Susie2
Posts: 15
Joined: Nov 2017

Thank you Cindi, Cathy and MAbound for the welcome and the recommendations to other helpful threads. Cathy, I appreciate the article on UPSC stats. In all my Google searches, I never stumbled on that one. I have gained so much info. from reading others' stories on this site over the past 6 weeks. I'm glad to finally be set up to be a part of this great support community.

 

dgrdalton's picture
dgrdalton
Posts: 46
Joined: Jun 2017

i was diagnosed UPSC Stage 1A Grade 3. My small town Missouri gyn/onc after surgery at 2 week PO said chemo no radiation. At 7 weeks he said no chemo because it was confined to a polyp. At 4 month ckup he said no not confined to polyp; it was confined to uterus with only 0.5 mm of myometrial invasion. And his business card said he was participating in MD Anderson Cancer Center. Their guidelines for 2017 say chemo and radiation. So I got a second opinion from Barnes-Jewish in St. Louis. Love my new gyn/onc! She recommended 3 chemo and 6 brachytherapy. My second chemo is on Monday. I’m so thankful for all the help I’ve received from this group of ladies. I feel like I’m doing all I can now to prevent recurrence.

hopeful56's picture
hopeful56
Posts: 73
Joined: Jul 2017

Hi Susie:

Thank you for your post and sharing that information.  I am staged 1a with microscopic cells found when I had a hysteroscopy.  I had a complete hysterectomy done with lymph nodes removed and no signs of any cancer.  As my surgeon/onc. explained to me I am in my "own class."  Treatment for me is debatable.  He said 3 to 4 rounds of chemo.  I finished with 3.  

I wish you well during your treatment.

Sandra

cheerful
Posts: 241
Joined: Apr 2011

Hi Susie: 

I wanted to respond to your recent post. I was diagnosed in February of 2011 with Stage 1 of UPSC. My tumor was 5 centimeters so my oncologist mentioned he wanted me to do aggressive chemo treatments so I had 6 done along with 3 brachytherapy. I started chemo in April and finished in August of 2011. I then went for the 3 brachytherapy treatments and finished them in mid October of 2011.  It was difficult for me losing all my hair it took about a year and a half for all my hair to grow back.  Looking back I am so glad I went through chemo and brachytherapy as I feel it saved my life. It was also hard for me about 2 days as I could only eat about 2 meals a day then my appetite returned and I was able to have 3 meals a day. This went on for most of the cycles of chemo. I also had a Neulasta shot and blood transfusion after the 5th chemo treatment.

  Last year, I did have a reoccurrence. My cancer was very tiny and a Pet Scan picked it up. Miraculously, I did not need chemo over this past year as my immune system kicked the cancer right out of me. It was found in my pelvis and spleen area. My latest cat scan in October (last month) shows there is No evidence of cancer - I am so highly relieved and very happy that this cancer is gone.  I only had an 18% chance of it coming back on me which is very low, but anyway, it did come back and I was shocked to get the diagnosis the second time, but so glad I did not need chemo as my blood levels started plummeting in January they were cut by more than half what they were in August or September of last year.  I also am very thanful to my oncologist who started with the practice last year as well as he came from another office in Allentown. I live about 10 minutes from Crozer Hospital in Upland, PA so I am close to his office for appointments which is great.  He had me go for blood work every month and my numbers were fluctuating in January from 60 to the 40 range and finally in May my CA level came down to a normal level of 26. Then in August it went down to 19 and earlier this month it was at 17.  My oncologist wants me to come back every 3 months. I also had a port put in about a year ago and will hopefully have that removed down the road.  My first oncologist retired about 2 years ago and still comes into the office once a week.

I want to wish you luck with your six treeatments.  Keep us ladies posted on how you are doing.

Cheerful

a/k/a Jane

zsazsa1
Posts: 224
Joined: Oct 2018

Hello, Jane.  I've just been diagnosed with mixed clear cell and UPSC.  They're calling it 1a, which to me is miraculous, since I had symptoms that began a full year before diagnosis (new onset post-menopausal clear vaginal discharge).  I have done a huge amount of research, but I think I'm going to go with the 6 rounds of carboplatin/taxol, followed by vag brachytherapy.  Honestly, I would like to have whole pelvic external beam, too, but my gyn onc says that if I do that, I'll have diarrhea and intestinal obstructions for the rest of my life.  I just want to maximize my chances of being around as long as possible for my kids, who are 21, 19, and 15, and still need me.

Anyway, I was very interested to read about your having a screening pet scan, because when I asked my oncologist about future surveillance, she said, "None."  I have read that there is very little chance of an early discovery changing the outcome.  It was so encouraging to hear that your immune system was able to get rid of the tiny recurrence all by itself!  But I am curious to hear that your  docs are apparently doing surveillance - or were the scans triggered by a rising Ca-125?

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