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What year and age dx?

Flufff's picture
Flufff
Posts: 67
Joined: Apr 2019

What year were you diagnosed at, and at what age? What type of uterine cancer do you have?

EZLiving66's picture
EZLiving66
Posts: 1452
Joined: Oct 2015

2015 at the age of 63. I have UPSC - Stage II or III (incomplete staging) with - knock on wood, no recurrence.

Love,

Eldri

MAbound
Posts: 1091
Joined: Jun 2016

March 2016, age 59. Endometrial adenocarcinoma, grade 3, stage 3a. I had genetic testing that showed I was negative for BRCAA 1 & 2, but positive for Lynch Syndrome. 

Treated with:

  • open abdomen radical hysterectomy that pretty much gutted me, including removing connective tissue and a good part of my vagina.
  • 1 round Taxol/Carboplatin and then 5 rounds taxotere/carboplatin.
  • a 2nd pelvic wash surgery because the first was iffy for the presence of cancer cells.
  • 25 rounds of pelvic radiation (via 3D-CRT) and 5 rounds of a vaginal boost (basically brachytherapy delivered externally).
  • Megace (hormone therapy) for nearly 2 years that was started about a month after I finished radiation. I was 90% PR+ (moderate to weak) and was started on Metformin during chemo (reactivates and strengthens receptors), so I was a good candidate for this. Most gyn-oncs don't use Megace unless you are recurrent. Mine was an older doctor and tended to treat me with old-school practices for both this and saving radiation until after I had finished chemo (he felt radiation damaged blood vessels where you most want chemo to reach).

 

I also received B-12 shots prior to each of my last 5 chemo infusions to help with the severe neuropathy that I developed after the first infusion. I had to beg my primary doctor's PA in order to get that as well as Metformin. Thankfully, he had read the same studies I had about it; my primary doctor probably wouldn't have agreed to it because that was the way she was. (Fired her behind when I didn't need her signature for surgeries anymore) Between that and chilling, and also continuing to take oral B-12, the neuropathy has lessened to where it just makes it take longer to fall asleep at night, but I was able to stop using the ice slippers for the burning except for some nights.

I moved and had to change gyn-oncs in 2018 and my new doctor took me off of the Megace and doesn't monitor me for recurrence with any tests except for a pelvic exam. That took some getting used to, but so far, so good and I remain NED.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1707
Joined: Jun 2015

I was diagnosed in May, 2015  at age 58, with UPSC stage 1A. Thankfully still NED. 

Primavera's picture
Primavera
Posts: 217
Joined: Mar 2019

at age 57. Endometrioid adenocarcinoma, stage 1a. Treated with brachytherapy. 

Diagnosed with breast cancer August 2020. Going through neoadjuvant chemo before surgery.

ConnieSW
Posts: 1537
Joined: Jun 2012

With UPSC 1a at age 65.  Treatment surgery, brachytherapy, chemo. So far NED.

 

( I had the same kind of brachytherapy as Moekay.  It was the longest 2+ days of my life-flat on my back in bed in isolation with a Foley catheter.  I told the radiologist after the first day not to even think about being 1 minute late to take the thing out. Bless his heart, he showed up a few minutes early.)

Forherself's picture
Forherself
Posts: 464
Joined: Jan 2019

No treatmen,t 30 months NED

yetti's picture
yetti
Posts: 30
Joined: May 2019

Hello. Fluff I was Dx in June 2018 Stage IV B figo 2. Endometerial cancer had 6 rounds  of carbo taxol aug - nov 2018. Had laproscopic robotic hysterectomy Jan 2019  then 3 more chemos with avastin  2nd opinion Cancer treatment centers of America  in Ga  last chemo March 29 2019    CTCA did ct and labs  and I was declared NEd  since April 2019  and still am  🙏 1 yr 1/2  NED as of  oct 2020  

 Official Dx. Adenocarcinoma of the endometrium.   Malignant neoplasm of the endometrium 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2841
Joined: Mar 2013

2012 - at 49 years old. UPSC, stage 1A. negative for Lynch, but plan on asking about HER2 and all the other things in a few weeks during my annual. Sandwich treatment of carbo/taxol-radiation (25 IMRT and 3 brachy)-carbo/taxol. 

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

Stage 3 BC, age 57;chemo and rads plus 5 years of tamoxifin; 76, 1A USPC,2016; recur VC 2017 and 2018,chemo, rads and surgery;2020 metastesis to peritoneam; am seeking no more treatment at 80.6 years old.

MoeKay
Posts: 301
Joined: Feb 2004

Surgical stage 1C, grade 2, endometrioid adenocarcinoma; diagnosed by gyn-onc as clinical stage 2B (gyn-onc never agreed with pathologist's staging, because he believed tumor had invaded the cervix).  Staging system was revised a number of years after my diagnosis, so that under current system I would be staged as 1B.  Radical hysterectomy, pelvic and paraaortic lymphadenectomy, 25 extermal radiation treatments, and 2 days in hospital in isolation for internal radiation (which was the way internal radiation was done back then). 

tinacap77
Posts: 29
Joined: Oct 2020

Complete robotic hysterectomy including   cervix on 8/26/20 and 12 lymph nodes

Diagnosed with Endometrial Cancer Stage 3 C1 Grade 1 Adenocarcinoma due to cancer invaded uterine wall 90% and was found in 1 pelvic lymph node

i just completed round 2 of 6 rounds of chemo and am supposed to have both internal and external radiation. Will do research to make sure i should do both. Second opinion advise was in favor of doing internal only. 

MAbound
Posts: 1091
Joined: Jun 2016

This is a 2016 quote from MoeKay that helped me to understand some of the criteria for having radiation when I was struggling with that decision. 

"First, I had a deeply-invasive tumor, which had invaded more than 80% of the thickness of my myometrium.  Second, pathology determined that I had extensive lymph-vascular space invasion (LVSI), which is a significant risk factor for recurrence in endometrial cancer.  See: http://www.sciencedirect.com/science/article/pii/S0959804915004463.  Third, my tumor arose in the lower uterine segment close to the cervix, which is another risk factor for local recurrence."

We all say that chemo treats systemically and radiation treats locally and can sometimes be saved for if there is a recurrence, but the three conditions above...myometrial invasion greater than 50%, LVSI, and origion of the tumor lower in the fundus (body) of the uterus....all weigh towards having radiation because it significantly reduces the odds of recurrence for those who have those criteria.

You don't say where your cancer originated in the uterus, but the 90% invasion and presence in a lymph node kind of push you into the should have it category.  I had all external radiation, but with a "vaginal boost" at the end instead of the brachy, you could ask about that option. I don't know for sure, but I think it did less vaginal wall damage than I've read other ladies having who had internal. How the radiation is delivered externally also matters because there are methods that are more focused to avoid surrounding organs than others. 

Yeo's picture
Yeo
Posts: 27
Joined: Nov 2019

Age 55, diagnosed October 2019 carcinosarcoma stage 3.c.1, 1 week later underwent radical hysterectomy, 2 weeks later started chemo. taxol/cabo.  3 rounds, then 28 external radiation treatments, then final 3 rounds  of chemo.,  finished treatment April 2020, 6 month following treatment scan NED.

MomCat6's picture
MomCat6
Posts: 5
Joined: Feb 2021

Hello, Yeo,

 

Your treatment plan is identical to the one I just began. I was diagnosed w endometrial cancer in July 2019 and had a full radical hysterectomy. It was discoverred at Stage 1, Figo 1 and they did not expect any recurrence given how early it was discovered. Fast forward to Dec 2020 and I was at one of my gyn onc post op exams. A vaginal mass was discovered.  tumor board diagnosed it as a recurrence of my primary endometrial cancer though I no longer have an endometrium or uterus. Adenocarcinoma. St 3. Because they did not expect a recurrence, they decided to reccommend an aggressive treatment rather than just locally treating the vagima mass. I just had my first chemo last week. 6-7 hours infusion. Paclitaxol and Carboplatin. I will have 2 more chemo sessions then 25 radiation, 3 internal radiation treatments then 3 more chemos.

I came through my first  session okay. Spent 9 days barely out of bed-just too weak. Itching top to bottom. some nausea. Really uncomfortable bone pain. I discovered my first hair loss beginning today. Ironically, it is pubic hair. Didnt really expect that. I'm apprehensive about the whole treatment plan. this stuff is harsh on a body. So many people have bad side effects. I guess I will continue but I definitely am not enthusiastic about doing so. 

If you ever see this, I have a few questions:

What is NED?

How are you doing now?

Any regrets about treatment plan?

I hope you are well and doing great!

 

 

Molly110
Posts: 182
Joined: Oct 2019

MomCat, I'm sorry you are dealing with a recurrence. Since this is an old thread, you might want to start a new one so that more people will see it, including Yeo.

NED means "no evidence of disease." It took me weeks to figure that out. I think people use it when there is no sig of cancer but it is too early to considered themselves cured. I believe, but am not sure, that some women always use NED no matter how many years they have made it without a recurrence. 

I had a different kind of uterine cancer than you, but my chemo was the same. I'm so sorry that you're having a tough time with it. Except for the first one, I had an easy time with the chemo. My gynecologist/oncologist thinks I may have been reacting to my first exposure to the castor oil in the taxol. Your care team should be able to help you with any side effects you're experiencing, especially nausea. I didn't have nausea, but they'd prescribed anti nausea meds beforehand just in case.

I think most women on this chemo regimen lose their pubic hair. I think your care team should have prepared you so that you wouldn't have been suprised, if it distressed you. 

Warm best wishes for an easier time.

Molly  p.s. I love your name. I've only ever had one cat, and her name was Mom Cat.

 

jan9wils's picture
jan9wils
Posts: 146
Joined: Mar 2017

I was 58 years old. Dx with endometrial adenocarcinoma stage 1B grade 2. Recurred 4 times. Still fighting the fight!

tinacap77
Posts: 29
Joined: Oct 2020

What treatment did you do?

BluebirdOne
Posts: 366
Joined: Jul 2018

two years NED. Also p53 mutation, negative for HER 2 

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

I was diagnosed in September 2005 after a "routine" hysterectomy.  I was 45 years old at the time.  Diagnosed with Endometrial Adenocarcinoma Stage 3A, Grade 2 at the time found in my uterus, cervix and left ovary.   They were unable to determine the primary, so they treated it as Ovarian.

tinacap77
Posts: 29
Joined: Oct 2020

Hello: what treatment did you do?

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

Carboplatin and Gemzar (I was allergic to Taxol) and then 3 HRD brachytherapy.

Armywife's picture
Armywife
Posts: 450
Joined: Feb 2018

I was age 57 when diagnosed in 2017 - endometriod endometrial adenocarcinoma Stage IVB Grade 2.  Had 1 round of Taxol/Carboplatin, 1 round of Carboplatin only, and 4 rounds of Taxotere/Carboplatin. We decided to reserve radiation for recurrence. NED so far 3 years, 1 month from end of treatment.

alicia2020
Posts: 64
Joined: Sep 2020

Age 65 diagnosed with Stage 2c endometrioid adenocarcinoma. Starting 6 rounds of paclitaxel and carboplatin next week.

zsazsa1
Posts: 539
Joined: Oct 2018

2018, UPSC 1a (but isolated tumor cells found in one of the two sentinel nodes taken).  S/P carboplatin/taxol/trastuzumab, and IMRT pelvic radiation.  No recurrence thus far.  I was 57.

cheerful
Posts: 266
Joined: Apr 2011

I was diagnosed in February of 2011 at the age of 59.  I had UPSC Stage 1 with 6 rounds of carboplatin and taxol and 3 rounds of brachytherapy.  No reoccurrence.

ChessieMae's picture
ChessieMae
Posts: 7
Joined: Feb 2020

In 2019 at age 71 I was diagnosed with a mixed tumor. 70% endometriod carcinoma, 30% serous.  Stage 1A, Figo grade 3. No lymph node invasion.  Had surgery, did 6 chemotherapy, 4 brachytherapy.  Finished treatment in Nov. of '19.  Seems it is never far from from my mind.  No reoccurrance at this point.

Maxster
Posts: 56
Joined: Apr 2020

I was diagnosed with serous cancer after a uterine biopsy.  It was just weeks before my 71st birthday.  Complete robotic hysterectomy.  Cancer staged at Grade 3 Stage 3C1.  Six rounds of carboplatin and taxol. Followed by 25 rounds of. pelvic radiation.  No recurrence found after two internal exams and CA125 tests since I ended radiation in April of 2020.  It is on my mind often especially as I near my next quarterly exam.

Tamlen's picture
Tamlen
Posts: 281
Joined: Jan 2018

I was diagnosed at age 56 in January 2018 with endometrioid adenocarcinoma, Grade 1, Stage IVB. It had metastasized to my lungs without stopping anywhere else in between. Chemo (carboplatin and taxol) killed the lung mets, I also had brachytherapy, and have been on hormone therapy since completing chemo in 2018.

barnyardgal
Posts: 268
Joined: Oct 2017

55 years old. Sept 2017 diagnosed by biopsy with stage 1a, grade 1 endometrial cancer - garden variety. Had hysterectomy in October 2017 and diagnosed as stage 3a, grade 2 endometrial adenocarcinoma. 

Started chemo Nov 2017. Had severe reaction to taxol and desensitization didn't work. So had 7 rounds of adriamyacin and carboplatin and 25 rounds of radiation which ended June 2018. Started Letrozole afterwards and take with Vit d so no bone pain. Have had clear ct scans with most recent in August and CA 125 was 4, though I don't know how reliable that is for me.

I am hyperthyroid but have never had any symptoms, but doctors have theorized that it could have fueled cancer. Its currently controlled with medicine. I was supposed to have my thyroid zapped in the spring, but covid and a ruptured appendix derailed those plans for now. 

I feel great and am hopeful.

cmb's picture
cmb
Posts: 594
Joined: Jan 2018

I had chemo and external radiation.

ncg007
Posts: 136
Joined: Nov 2015

Stage IIIC1, High Grade 3, Mixed 50% Endometrioid Adenocarcinoma (EAC) and 50% Uterine Serous Carcinoma (USC)

First day of treatment started with both chemo & radiation, 2 rounds of Cisplatin 3 weeks apart along with 28 external radiation treatments, followed by 4 rounds of carboplatin/paclitaxel targeted every 3 weeks.

Dak82's picture
Dak82
Posts: 14
Joined: Dec 2020

I am new to the forum today. Diagnosed by gyn on 13 Nov 2020, age 60. Had radical abdominal hysterectomy plus everything else on Dec 1 as well as removal of 13 lymph nodes of Which 5 came back positive for cancer including 3 in para-aortic region. Starting chemo next week on 16 Dec. This has moved at lightning speed. My surgical staging was 3C2, grade 3. Before surgery it was 3B, G1. I am being tested for Lynch since IHC test came back showing two genes with possible mutations. We are pressing on with the chemo though. Compared to some of you ladies I have only just begun the journey. The shock was tremendous but I had more clarity in my thinking and processing than I've ever had before. There is no doubt in my mind I will do everything I can to wipe this out. I love my treatment team even though I have met them only a few times mostly in the hospital. I trust them completely.

cmb's picture
cmb
Posts: 594
Joined: Jan 2018

While I'm very sorry that you had to find this site, you'll find that most of us have been through the same process as you'll be starting and can share their experiences to help as you start this unwelcome journey.

Even if you learn that you do have Lynch Syndrome (which I have too), most women still start treatment with chemo. So you may want to read the FAQ at the top of this board's topics. There are two discussions linked there that you might find especially helpful right now: Ladies going through chemo - how are you doing? and Icing

Be sure to sure check back in with us with any questions you have. When you do, I recommend that you start a new topic with your questions so that more members will spot your post easily.

Some of us have added information about our experiences in our site profile. Click on the member's user name to read the profile, where it's available.

Kathy G.'s picture
Kathy G.
Posts: 219
Joined: Dec 2012

Hi! Welcome Dak82!

Diagnosed in 2012 at age 55. Radical hysterectomy..

no further treatment necessary. No reoccurence.

Blessed!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1707
Joined: Jun 2015

Welcome DAK82. So sorry you need to be here and very glad you found us. Your attitude is great and will help you get through this part of your journey. Please don't hesitate to ask us anything. Someone most likely has expereinced whatever is on your mind. CMB gave you three great links to read. I hope you have time to do so. I think you will find them helpful.

Please come back and let us know how you are doing.

Love and Hugs,

Cindi

dgrdalton's picture
dgrdalton
Posts: 146
Joined: Jun 2017

Had hysterectomy May 2017. 2nd opinion in Oct 2017. Did 3 chemo and 6 brachytherapy. Recurrence 18 months after frontline. Did 6 more taxol/Carbo chemo. 2 month break and started Keytruda/Lenvima in April 2020 until September. Started Abraxane the end of Oct. My CA-125 has gone from 316 to 98.1 to 36.8 after 2 infusions, so I am hopeful.

Dak82's picture
Dak82
Posts: 14
Joined: Dec 2020

CMB thank you for the references. My oncologist was curious about the why of my cancer since I have no other risk factors. One of my sisters, was a bio-patent lawyer which means she is an expert at research and has access to many subscription services. I will happily share whatever she finds and sends to me. I am concerned with LS only in that I have 3 kids entering the ages where LS can influence cancer manifestations, and I have 4 siblings with kids who are interested.

cmb's picture
cmb
Posts: 594
Joined: Jan 2018

Although both my parents had cancer, neither was "typical" of Lynch Syndrome. My mother's cervical cancer wasn't considered hereditary and my father's colon cancer was diagnosed very late in life – long after the typical presentation of this cancer as a result of Lynch Syndrome. Plus my particular type of uterine cancer (uterine carcinosarcoma or MMMT) isn't the type of uterine cancer typically influenced by Lynch Syndrome. In fact, my insurance company originally refused to cover the genetic testing that I had to confirm the initial pathology findings based on these factors. (I appealed and they did eventually agree to cover the cost).

But while I don't have children, my sister has seven, plus grandchildren. So my three siblings also took the genetic test. Fortunately, my sister with children and my other sister did not inherit Lynch Syndrome, but my brother did. He doesn't have children either, so at least this mutation dies out with us in our direct family line. I also alerted my cousins since we don't know which side of the family has the mutation (both my parents died many years ago). As you say, it's important for other family members to know if they are at risk for cancer from Lynch so they can be proactive.

CeciMcV
Posts: 2
Joined: Dec 2020

Luego de tener a mi primer hijo, me encontraron un tumor en el útero que resultó siendo un carcinosarcoma grado 4 B. Fui sometida a Quimioterapia y luego una histerectomía con conservación de ovarios. Hasta el momento Y PARA SIEMPRE voy a estar sana :-)

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2841
Joined: Mar 2013

CeciMcV, I hope you don't mind I put your text in a translation tool for everyone.  She wrote:

After having my first child, they found a tumor in my uterus that turned out to be a grade 4 B carcinosarcoma. I underwent chemotherapy and then an ovarian sparing hysterectomy. Until now AND I will be healthy FOREVER :-)
Primavera's picture
Primavera
Posts: 217
Joined: Mar 2019

They usually come back saying all kinds of crazy things. I speak Spanish fluently.

Primavera's picture
Primavera
Posts: 217
Joined: Mar 2019

Gracias por contribuir con tu experiencia y muchas felicidades por estar libre de tu cancer. Otras mujeres se benefician de tu experiencia y tienen esperanza cuando alguien con cancer en estado avanzado o agresivo sale bien de todo esto y está sana y salva.

CeciMcV
Posts: 2
Joined: Dec 2020

:-) muchas gracias!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2841
Joined: Mar 2013

Dak82, as already recommended, please let us know if you have questions on anything.  It is a great group here of support and love.

Northwoodsgirl
Posts: 572
Joined: Oct 2009

I was diaganosed in May 2009 at age 53 yrs. Stage 2B endometrial andenocarcinoma. The cancer had gone from uterus wall down into cervix. Open surgical procedure to remove uterus, fallopian tubes, ovaries, omemtum, sentinal peri-aortic  lymph node and 26 other lymph nodes. Taxol and Carboplatin every three weeks x3 then 25 external pelvic radiation treatments and 3 brachytherapy (internal vaginal radiation treatments). Followed by another 3 rounds of chemo Taxol and Carboplatin. My 72 year old mother was diagnosed and died at the age of 72 yrs old just 4 years before my diagnosis. I also never had children either. Still have chemo induced neuropathy in feet and fingers which affects my ablility to fall asleep some nights. Due to the lymphedectomy (removal of so many lymph nodes) I have lymphedema (swelling) in both legs and pelvis. Compression stockings are helpful.  Also, where I had pelvic radiation my skin definately feels different -more dry and itchy in the winter time. I am blessed to be a survivor and thankful for my life! As my dear Dad would say when asked how he was, “ Good! I can’t complain.” 👍🏻🥰 

 

GenevaBe
Posts: 2
Joined: Dec 2020

Diagnosed at 40, just a couple weeks ago. endocarcinoma of the uterus, grade 1. Scheduling a total hysterectomy including tubes and ovaries. 
GG Grandmother passed of this at 70, but that was back in the early 1900s. Mother needed a hysterectomy in her early 20s but I am unsure why. Sister has PCOS and gestational diabetes. 
I dont meet any of the high risk factors for this sort of cancer. 

ConnieSW
Posts: 1537
Joined: Jun 2012

Glad you found your way here.  We will help in any way we can.  I am so sorry you are facing this at such a young age. 

GenevaBe
Posts: 2
Joined: Dec 2020

Thank you 🙏🏼 

My friends say its just a fast track promotion to Crone lol (the hysterectomy). 
I feel, personally, that if it weren't meant to be happening, then it simply wouldnt be. But my background is in existential psychology which greatly influences my outlook. 

Im glad I found this place too. Reading through the comments this morning has helped ease some confusions or wonderings. 

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