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How old when dx?

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

I told you I would be more active in here. Not lying :) :) :)

How old were you when you were diagnosed the first time? What stage? What type? What treatment?

Me:

Diagnosed at 47 in September 2018.

Stage 4B USPC

Spread to fare for surgery so first 3 x Carbo/taxol. Chemo worked so got the massive open surgery. 12” scar. Finished off with 3 x Carbo/taxol. NED for 9 months. Just finished #6 of Carbo/Doxcil. Scan next week.... 

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

Hey Fluff,

I hope you are feeling a bit better from you final treatment. Sending positive vibes that your scan reveals a great outcome.

For me: diagnosed at 58 in May, 2015

Stage 1A UPSC 

I had the standard care of 6 Carbo/Taxil and Brachytherapy

Thankfully, still NED and I hit my 5 year marker post treatment this coming January.

Love and Hugs,

Cindi

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

BC, 1997(57);chemo, rads and 5 years on tamoxifen! 2016(76) UPSC ,1A- chemo, 4 brachy; 2018; Vaginal lesion - chemo, pelvic rads and 4 brachys; 2019 - scan shows sac in vagina- surgery; now on Megace and Tamoxifen!   No metastisis just hangs out in vagina. Doing fine  for now.

BluebirdOne
Posts: 366
Joined: Jul 2018

I was 67 at dx, 1a, UPSC, with LVSI. Hysterectomy, BSO. 4 chemos, 3 brachy. Reserving pelvic radiation in case there is a recurrence. Currently NED almost 2 years after dx. Progress! Good luck to you Fluff! 

xxoo

Denise 

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

49 yo with UPSC stage 1A.  Chemo/radiation/Chemo sandwich treatment

MAbound
Posts: 1091
Joined: Jun 2016

I was 59 at diagnosis and still hadn't gone through menopause! My doctored sent me for a regular pelvic ultrasound (not transvaginal) twice after I was 55 before I was diagnosed by a biopsy, so I think she was thinking of the cancer possiblity, but never mentioned it to me.

If I had known anything about the risk factors for this cancer, I would have known to push for ruling it out sooner than it was found because I had multiple risk factors for it besides the late-onset menopause and would have been worried about it. Instead I only saw when I looked it up that, yes, late-menopause happens and nothing tends to be done about it until you turn 60. Where I read didn't say anything about it being a cancer risk factor. I'm so lucky I wasn't a stage 4 and at death's door when I was finally tested, but adenocarcinoma is usually caught earlier than it was for me, so I'm still really mad at the lack of education there is for women about it like there is for breast and cervical cancer. It's no wonder that rates for this cancer are increasing when they are decreasing for others. Learning about it after the fact is just too da** late!

barnyardgal
Posts: 268
Joined: Oct 2017

I was 55 when diagnosed with regular endometrial cancer. 3a, grade 2. Diagnosed Oct 2017. Initially treated with taxol and carbo, but I was very allergic and couldn't desensitize to it. Switched to adriamyacin and carbo. Had my last ct scan about a month ago after a ruptured appendix and all is clear. I am taking letrozole (femara) and have been on it for about 2 years. 

When I was 50 I went to the dr because my period lasted 2 months. He said its normal don't worry because you're getting older. When we switched insurance and went to Kaiser, I went to the new dr I mentioned it and off I went for tests.  I wish I hadn't accepted the first Dr's nonsense , but bygones.

BluebirdOne
Posts: 366
Joined: Jul 2018

the incompetency or willinginess to downplay or ignore symptoms is staggering. My diagnosing gyne told me and my husband numerous conflicting things. He downplayed cancer, to the point of telling me immediately after my hystersocopy that he got almost all of the fibroids out, so I was good to go, no cancer before ANY pathology had returned. Instead, two days later he calls me with a diagnosis of USPC. So sorry. So rare... What a complete idiot. Who tells their patient before path that they are free and clear? So I am very skeptical of some doctors who either don't care or are so oblivious that they make a dx that has no basis in reality. And this guy is a top rated gyne. I know better. 

 

Denise 

teranarmstrong's picture
teranarmstrong
Posts: 11
Joined: Apr 2020

My gyno did the same thing Bluebird One. Told me it was a polyp. Even showed me the picture on her computer. A week later, she calls and says path report is back and it's lots of cancer. Didn't even apologize.

teranarmstrong's picture
teranarmstrong
Posts: 11
Joined: Apr 2020

I was diagnosed this year.  Began post-menopausal bleeding Dec 18, 2019, at gyno Jan 6 2020. onc-gyno Jan 27, 2020. Scheduled for surgery early Feb but onc-gyno canceled after CT scan showed distal mets. No diabetes, no overweight, no pain, never smoked, no kidney problems,  no other bleeding, no early menarch or late menopause, no high blood pressure, no missed annual exams. Just BAM! There it is.

I feel like the grim reaper is my shadow. You ladies inspire me!

BluebirdOne
Posts: 366
Joined: Jul 2018

that the interior uterine cavity was pretty full, indicating that it was likely fibroids. Yes, it turned out to be fibroids, also two polyps with cancer, and myometrial invasion. I was never told that there was such a thing as UPSC or any of the other types. He told me 1st time seeing him post tiny pink spotting that I didn't have cancer, but if it was cancer it would be CURED with a hysterectomy, only, no mention of type, grade or staging, much less that some women with uterine cancer need chemo, or radiation. Of course, I was shocked when the path came back UPSC, and then horrified when I began learning what I really had. He failed at preparing me and my family, then failed again by miminmizing my risks. He was so incompetent that I immediately called Mayo for a second opinion because we felt we were so misled. I ended up in the ER less than one hour after having the hysteroscopy becuase of severe pain. He never called to see if I was alright or to ask why I was there. The excellent, kind and respectful treatment I received at Mayo helped us to adjust to our new reality of UPSC. So far NED. It makes me sad that so many of us have to be put through hell just to get the proper respect and treatment we deserve. Good luck to you..

Denise 

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

I was diagnosed at age 67.  My biopsy was a hysteroscopy and a laparoscopy.  I had a polyp on the outside of my uterus and a mass on my ovary which turned out to be a cyst.  The diagnosis then was Endometrial intraepithelial neoplasm a precusor of endometroid cancer.  About 4 days before my surgery the diagnosis was changed to serous intraepithelia carcinoma.  It was a shock given to me over the phone.  I had scans done and they were clear 3 days before surgery.  I had no idea what they would find.  My post surgery diagnosis was serous intrepithelial carcinoma with no residual malignancy in the hysterectomy specimen.  They found nothing else.  My cells were inside a polyp.   I was told tht I had two choices, treatment or no treatment.  And I could recur whether i had treatment or no.   I chose no treatment.  I am almost 2 years out.  No recurrence yet.  My chances of recurrence are low but still there and still a worry.  

LisaPizza's picture
LisaPizza
Posts: 331
Joined: Feb 2018

I was diagnosed at 47, and I'm sure I'd had it for some time. Stage 3a, grade 2, type 1, surgery, chemo, external rads.

Theskinnyscot's picture
Theskinnyscot
Posts: 29
Joined: Dec 2019

age 59. Dx.Oct.19  Stage 1b, grade 3 endometrial carcinoma. Open total hysterectomy, 25 rounds IMRT 

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

I was 62 and just felt something was wrong but my new doctor ignored me. Changed doctors and she ordered an endometrial biopsy which was positive. Sent me to a oncologist/gynecologist who did a total hysterectomy.  He called and wanted to see me right away. He said I'm sorry but it's UPSC and I should start chemo ASAP. He took no lymph nodes so couldn't accurately stage it but would treat it as Stage III. I only made it through three chemos and believe a fourth one would have killed me - my GP agreed and she stopped them. September 30th, I'll be five years NED.

Love,

Eldri 

janaes
Posts: 800
Joined: May 2016

I was 42

Dx MMMt uterine cancer stage 2 grade 3

Was found by a biopsy

Im four years out from hysterectomy and 3 and a half years from treatment and have been NED the wbole time.

Maxster
Posts: 56
Joined: Apr 2020

I received an endometrial biopsy after abnormal bleeding and ultrasound.  It was positive for cancer.  The longest wait I had was for the biopsy to be done. I had a complete hysterectomy (robotic laporoscopy) in September 2019 and was diagnosed with Stage IIIC high grade serous carcinoma.  I went through 6 rounds of carbo/taxol chemotherapy.  I was supposed to have four rounds of brachytherapy during one of the three week breaks between chemo infusions.  The radiation oncololgist felt one node was suspicious and decided it would be best to do full pelvic radiation after I completed chemo.  I had second opinions on both the original treatment plan and the changed one.  I completed my radiation on April 10, 2020.  I have check-ups coming up with all of the physicians.  I am most nervous about the CA125. My risk factors were early menarche and late menopause.  I am also not overweight. None of those factors is really in my control. Fluff, I wish you the best.

 

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

I was still getting my period at age 55, sometimes after long lapses of time, and my gynecologist had repeatedly told me not to worry, I was just "going in and out of menopause." When she retired, I took my concerns to my PCP and she immediately ordered an ultrasound, which started the whole thing rolling.

Endometrioid adenocarcinoma with "likely" LVSI, mis-diagnosed as Stage 2, corrected to 4b a few of months later when CT scan showed extensive nodules in my lungs (and nowhere else), likely there a long time and confirmed as endometrial by biopsy.

Treatment: Total hysterectomy, taxol and carboplatin, brachytherapy, followed by aromatase inhibitor, which I'm still on. NED for 1.5 years now.

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

Diagnosed April 19, 2017. Got 2nd opinion Oct 9, 2019 and had 3 chemo Taxol/Carbo and 6 brachytherapy.

Diagnosed with recurrence August 19, 2019 in multiple lymph nodes in abdomen, chest and thorax. Did 6 more chemo. Spread to pelvic lymph nodes and am currently on Keytruda/Lenvima Since April 6, 2020.

Thank you for this post, Fluff!

BluebirdOne
Posts: 366
Joined: Jul 2018

DonnaFaye, Teranarmstrong, janaes, and whomever I left out who are fighting so hard. Anyone I missed, sorry for the omission. We are here for you. 

xoxo

 

Denise

cheerful
Posts: 266
Joined: Apr 2011

I was diagnosed with Stage 1A in February of 2011 at the age of 59 so I am 9 years out from being diagnosed.  I had 6 rounds of carboplatin and taxol and 3 brachytherapy treatments. I had surgery done by my  GYN and he removed my ovaries, cervix, and fallopian tubes.  I did not have my Omentum or lymph nodes removed as my GYN did not know it was cancer until after my surgery then I was referred to an Oncologist. In the fall of 2017, the cancer came back to my pelvic and splleen areas, however, I did NOT need chemo as the cancer just left me and my CA levels were well over 100. and I was being monitored closely with blood work every month until the spring of 2018, so I did not need chemo and brachy treatments at that time since then I have been NED with just blood work being taken.  I did have a Port put in the spring of 2016, and had the Port removed in the spring of 2018 after the cancer had left me. I did have an Ultrasound of the Abdomen and Pelvis in the spring of 2019, but everything came back clear.  I do see my Oncologist 2x a year and will have to be monitored for the rest of my life as our cancer (UPSC) is very sneaky and cannot be left to chance.    

Maxster
Posts: 56
Joined: Apr 2020

Hello Cheerful, I just completed my treatment for UPSC and your post brought up some questions.  From what I understood your cancer recurred in 2017 but you did not need chemo because the cancer left you.  I am not sure what that means.  Did it just disappear?  I understand this is personal and you may not wish to reply.  I am trying to understand this horrid disease. Thank you.

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