Let's have a roll call!
Comments
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Hi, I'm Sue
and living in Washington State. Age 68
1. I have UPSC or Serous Endometrial Intrepithelial carcinoma. Stage 1A with no residual malignancy in the hysterectomy speiclmen. Lymph node mapping with Sentinel nodes taken. Complete staging negative for malignancy.
2. No treatment. I could have opted for treatment, but with no malignancy in hysterectomy specimen I was offered the option of no treatment.
3. 18 months NED
4. I know it makes some people uncomfortable I chose no treatment. I did because I could recur even if I had treatment. Studies of my same results show about a 5% chance of recurrence. They just don't know. I am conmfortable with my choice, and cancer research needs people who choose no treatment for retrospective studies. Yes I do still worry. But I am on my path. I asked my gyne oncologist what she would do if she were me, and she said I would probably choose no treatment.
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NowForherself said:Hi, I'm Sue
and living in Washington State. Age 68
1. I have UPSC or Serous Endometrial Intrepithelial carcinoma. Stage 1A with no residual malignancy in the hysterectomy speiclmen. Lymph node mapping with Sentinel nodes taken. Complete staging negative for malignancy.
2. No treatment. I could have opted for treatment, but with no malignancy in hysterectomy specimen I was offered the option of no treatment.
3. 18 months NED
4. I know it makes some people uncomfortable I chose no treatment. I did because I could recur even if I had treatment. Studies of my same results show about a 5% chance of recurrence. They just don't know. I am conmfortable with my choice, and cancer research needs people who choose no treatment for retrospective studies. Yes I do still worry. But I am on my path. I asked my gyne oncologist what she would do if she were me, and she said I would probably choose no treatment.
36 months NED
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Roll Call
Name: Deb
1. Stage 1 B (1 C with the '88 model), Grade 1 Endometrioid Adenocarcinoma. 83% myometrial invasion and LVSI present (Lymphovascular space invasion). Second opinion two months after 10/12 mm (83%) found 9/13 (69%) which Rad onc explained could be due to tissue aging in the lab.
2. Hysteroscopy/polypectomy/biopsies found lots of large polyps and received formal diagnosis mid Feb 2021. DaVinci Robotic-Assisted Laparoscopic Total hysterectomy / BSO / Partial Vaginectomy March 24th 2021. Three Sentinel nodes removed and checked, no evidence of cancer. Next, 5 brachytherapy radiation treatments (High Dose Radiation) over a two-week period, ending on July 1 2021.
3. Current status: daily pain on left side. Surgeon's report noted I had three times the blood loss expected, and he spent much longer on surgery than typical. This is owing to my history with ectopic pregnancies and surgeries - a laparotomy in Cambodia in 1997 (emergency surgery, 10 cm. cut on lower abdomen to remove three-month fetus in fallopian tube which had ruptured), followed by several laparoscopies, one to cut away adhesions and another surgery to deal with a second ectopic pregnancy in Thailand. Lots of baggage there, in more ways than one.
I am being monitored every two months for the next few years, owing to my deep myometrial invasion and LVSI. I'll see my rad onc on the 17th Aug 2021, and my gyn onc on 31 Aug (we'll discuss my transfer to a gyn onc at the same clinic, as he is retiring).
4. Coping: I am here a lot, learning as much as I can. I tend to perseverate until I "know" what I think I need to know, so try to limit my "thinking about my DX" time. I'm very physically active, and have walked 408 miles since April 15th (about 100 m. per month). I bike, work out, work the farm, play with the dogs as much as possible, and drink a lot of water. I'm emotionally fragile at this time, and may begin antidepressants (again) and the prescription is ready for pick up. I grant myself grace and am gentle with myself. It's been a very rough eight months, and I'm still here and working on my health! Thanks to all who are here. I no longer feel alone with this cruel disease.
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Hi my name is Mary Ann
I was diagnosed last September with clear cell carcinoma of the endometrium stage 3B grade 3
I had a hysterectomy last October followed by chemo radiation and brachytherapy
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Welcome Mary Ann! I hope you
Welcome Mary Ann! I hope you are recovering well from your treatments.
This is an active, friendly, honest and supportive place to be. Ask just about anything and someone will have an answer for you.
Love and Hugs,
Cindi
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TeddyandBears_Mom said:
Welcome Mary Ann! I hope you
Welcome Mary Ann! I hope you are recovering well from your treatments.
This is an active, friendly, honest and supportive place to be. Ask just about anything and someone will have an answer for you.
Love and Hugs,
Cindi
I'm doing pretty good Cindi thanks for asking and for the welcome!
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Saying hi to you, MaryannMaryann1026 said:I'm doing pretty good Cindi thanks for asking and for the welcome!
I was reading about you (clicked your name) and I have to agree: you sure do learn who your friends are. You also learn who is good for support and who is not.
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Hi, I am Lyn.
I am 71 years young.
I was diagnosed with endometrial adenocarcinoma in November of 2020 : unknown stage.
I had a complete hysterectomy on December 20th, 2020. Pathology showed extensive lymph vascular space invasion and staged IIIA.
I have completed 6 rounds of carbo/taxol, 28 days of external radiation and 3 brachy as of 8/26/21
I am NED as of my last CT and PET scans in July 2021 prior to radiation.
I am currently in therapy, completed one of 24 sessions for strengthening my pelvic floor and controlling bowel issues brought on by radiation.
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So Glad you Reached Out to Us TodayRosesforever said:Thank you
This is a nightmare. I have emailed you I have so many questions. Thank you again.
Roses,
Reading your story makes me cry. What anguish you have endured from the 'rare' side effects. I am experiencing occasional fecal incontinence and I am aware of how both embarrassing, debilitating and isolating it is. I stay close to home and carry a change of clothes. I have not had your urinary issues.I am in my seventies also. Did you try the pelvic floor therapy? I hope it is helpful to me. I hope Susan can help you with her similar experience. Big Hugs!
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Just a HelloLyn70 said:Hi, I am Lyn.
I am 71 years young.
I was diagnosed with endometrial adenocarcinoma in November of 2020 : unknown stage.
I had a complete hysterectomy on December 20th, 2020. Pathology showed extensive lymph vascular space invasion and staged IIIA.
I have completed 6 rounds of carbo/taxol, 28 days of external radiation and 3 brachy as of 8/26/21
I am NED as of my last CT and PET scans in July 2021 prior to radiation.
I am currently in therapy, completed one of 24 sessions for strengthening my pelvic floor and controlling bowel issues brought on by radiation.
I always appreciate your posts. Just wanted you to know that!
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Howdy
Type and Stage of cancer: Stage 1, Grade 1, endometriod. Dxd in 2010.
Treatment: Surgery only.
Current Status: NED
I had breast cancer at the same time and underwent surgery, chemo and radiation. After 11 years, I don't expect to see either again.
I seldom check in here anymore. But I am today and wish everyone the very best
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Hey You! What a nice surpriseDouble Whammy said:Howdy
Type and Stage of cancer: Stage 1, Grade 1, endometriod. Dxd in 2010.
Treatment: Surgery only.
Current Status: NED
I had breast cancer at the same time and underwent surgery, chemo and radiation. After 11 years, I don't expect to see either again.
I seldom check in here anymore. But I am today and wish everyone the very best
Hey You! What a nice surprise to see your name pop up Double Whammy. So glad you came by and are doing well.
Love and Hugs,
Cindi
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We are always glad to see folks whoDouble Whammy said:Howdy
Type and Stage of cancer: Stage 1, Grade 1, endometriod. Dxd in 2010.
Treatment: Surgery only.
Current Status: NED
I had breast cancer at the same time and underwent surgery, chemo and radiation. After 11 years, I don't expect to see either again.
I seldom check in here anymore. But I am today and wish everyone the very best
check in with us. Thanks so much for the update. Gives us hope for our own futures.
Denise
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Roll Call
Hi everyone, my name is Yetti! 12/29/1961. I LIVE IN HOBE SOUND FLORIDA, SOUTH, EAST COAST
June 2018: DX WITH STAGE IV B FIGO 2 ENDOMETRIOD ENDOCARCINOMA
IN EARLY JUNE 2018/ GYN ANNUAL EXAM, POLYP IN CERVIX, REFERRED TO GYN ONC
TESTING DONE CT & PET SCANS/ HYSTERECTOMY RECCOMENDED, RESULT FROM SCANS: PELIVIC TUMOR 12CM, NODULES IN OMENTUM AND LUNGS DX WITH STAGE 4 B FIGO 2/ ENDOMEDROID ENDOCARCINOMA/ CHEMO : CARBOPLATIN & PACITAXOL AUG-DEC 2018 HAIR LOSS 2 WKS AFTER 1ST CHEMO, HAD HEAD SHAVED BALD ?? DEVASTATED BC BEING BALD WAS UNACCEPTABLE TO ME, FELT IT WAS IMPOSSIBLE TO HAVE A QUALITY OF LIFE BEING ?? I HATED MY LIFE WANTED TO BE LEFT ALONE TO DIE, I DIDNT WANT CHEMO! I WANTED THE HYSTERECTOMY AND TO BE FINISHED WITH TREATMENT AFTER THAT! i HAD A BREAK FROM CHEMO IN EARLY DEC TO MID JANUARY FINALLY HAD HYSTERECTOMY, DEBULKING LAPROSCOPIC ROBOTIC HYSTERECTOMY/ BC CHEMO WAS EFFECTIVE SHRUNK TUMOR AND NODULES, I WAS READY TO BE DONE WITH ALL THIS, THOUGHT I WAS DONE WITH CHEMO AFTER HYSTERECTOMY! I WAS TOLD I NEEDED 3 MORE CHEMO, I WAS ? MY HAIR HAD STARTED TO GROW IN DURING BREAK/ PEACH FUZZ, I HAD CARBOPLATIN/PACITAXOL AND AVASTIN , HAIR FELL OUT AGAIN ! SO BALD ?? AGAIN ? I HAD A PET SCAN BEFORE RESTARTING CHEMO ! CLEAR SCAN! ONC STILL WANTED ME TO DO MORE CHEMO! ONC SUCKED AT COMMUNICATING! I ASKED HIM HOW MANY MORE CHEMOS WAS HE PLANNING FOR ME ,HE SAID " WE ALREADY DISCUSSED THAT AND WOULD NOT ANSWER ME. MARCH 29 2019. LAST CHEMO ! APRIL 2019. 2ND OPINION @CANCER TREATMENT CENTER OF AMERICA NEWNAN GA. THEY DID THEIR OWN CT SCAN LABS CA125! DECLARED NED APRIL 18 2019 ! PRESCRIBED LETROZOLE/ SIDE EFFECTS: WEIGHT GAIN, SHOULDER NECK STIFFNESS/ LEG, JOINT KNEE STIFFNESS AND HAIR THINNING ! SO AFTER WAITING A YEAR FOR HAIR TO GROW BACK! ITS THIN AND STRINGY, I TRIED TO LET IT GROW OUT BUT IT LOOKED AWFUL! SO NOW I HAVE TO TAKE LETROZOLE THAT THINS THE HAIR I WAITED A YEAR + TO GROW BACK IN/ IVE GAINED 20#s OF THE WEIGHT I LOST DURING CHEMO. I HAVE TO TAKE LETROZOLE TO HOPEFULLY AVOID A RECURRENCE! HOWEVER, IF I DO HAVE A RECURRENCE I WILL NOT DO CHEMO OR RADIATION OR ANY OTHER TREATMENT AGAIN ! I WILL BE 60 IN DEC 2021! I WLL BE NED 3 YEARS ON APRIL 18 2022 ! IM HAPPY TO BE NED BUT IT FEELS LIKE THIS CANCER HAS TAKEN AWAY THE LAST FEW YEARS OF MY 50's I WAS 57 WHEN I WAS DX! CANCER HAS CAUSED ME TO LOOK 8O AND FEEL 80! IM AN EMPLOYEE OF MARTIN COUNTY SCHOOL DISTRICT, I HAD RETURNED TO WORK 5 MTHS AFTER MY LAST CHEMO! HARDEST THING IVE EVER HAD TO DO! RETURNING BACK TO WORK WITH VERY SHORT UGLY HAIR! LOW ENERGY EXHAUSTED AND EMOTIONAL MESS BY WED IN A GIVEN WEEK ! I STILL HAVE MY PORT BC I HAVE A DIFFICULT TIME WITH BLOOD DRAWS I ALWAYS HAVE, EVEN BEFORE CANCER ! I NEVER HAVE SEEN A SHRINK OR COUNSELOR BEFORE IN MY LIFE UNTIL CANCER IM ON AN ANTIDEPRESSANT AND MED FOR ANXIRTY WHICH IS HELPING ME ! I AM FEELING BETTER ABOUT THINGS LATELY! CANCER THE GIFT THAT KEEPS ON GIVING!
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things I wish people would not say.CheeseQueen57 said:Things I wish People Wouldn’t Say!
"You Look Great!". Looks can be deceiving. I always, even in my worst moments made the extra effort to try to look good. Not really for others but for myself.
"Don't worry, you'll be fine.". That's not necessarily true.
"You're so strong". I have no choice.
"You'll beat this" Not necssarily You can't will this away
"I'm getting tired, of hearing "I sorry";but I totaly get it why people say it.. My cancer is not anyone's fault. If there is anyone at fault it would be me and my life style....and that is not always a clear reason. I think hearing the news makes makes people uneasy and they just don't know what to say...
It sounds like your friends and aquaintences are trying their best to be supportive....if you don't get a diagnois like this you just don't know how it feels.
Last summer my company merged with another company and gave us a one of their partners to work with....Every corporation has its own way of doing things and what may be efficent to one is a nightmare for someone else.....I got double the work...plus furloughed one day a week due to covid...plus they changed to pay scale. Double the work , less time to do it in, and with less pay. Yea corporate America....Anyway, There was this one day where I was having trouble getting someone from the other company to do something so simple, and I could not get him to do it. This issue went on for weeks...Never got done and became a huge issue. I lost it.... threw my glasses accross the room.... Yes, not very mature or professional of me......very bad behavior on my part
A co work told me to calm down" it's just a job."... ITS JUST A JOB!!! I waas so mad...Yea its just my reputation, my income ( in the middle of a pandemic...where unemployment has exploded), my livilyhood, the ablility to work for two of the most honest people I have ever worked for in my life; my health care insurance and other benefits...who know I would need them so bad....I have never been sick, (besides minor cold and flu) other than my cancer....which at the time was growing inside of me and I had no idea I had it.
God bless my freind and co worker who tried to give me prospective, as ili advised as it was.
I can relate to your pain and frustration... but I guess its all a part of being patient and kind...
Godl Bless you
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Cancer aftermathyetti said:Roll Call
Hi everyone, my name is Yetti! 12/29/1961. I LIVE IN HOBE SOUND FLORIDA, SOUTH, EAST COAST
June 2018: DX WITH STAGE IV B FIGO 2 ENDOMETRIOD ENDOCARCINOMA
IN EARLY JUNE 2018/ GYN ANNUAL EXAM, POLYP IN CERVIX, REFERRED TO GYN ONC
TESTING DONE CT & PET SCANS/ HYSTERECTOMY RECCOMENDED, RESULT FROM SCANS: PELIVIC TUMOR 12CM, NODULES IN OMENTUM AND LUNGS DX WITH STAGE 4 B FIGO 2/ ENDOMEDROID ENDOCARCINOMA/ CHEMO : CARBOPLATIN & PACITAXOL AUG-DEC 2018 HAIR LOSS 2 WKS AFTER 1ST CHEMO, HAD HEAD SHAVED BALD ?? DEVASTATED BC BEING BALD WAS UNACCEPTABLE TO ME, FELT IT WAS IMPOSSIBLE TO HAVE A QUALITY OF LIFE BEING ?? I HATED MY LIFE WANTED TO BE LEFT ALONE TO DIE, I DIDNT WANT CHEMO! I WANTED THE HYSTERECTOMY AND TO BE FINISHED WITH TREATMENT AFTER THAT! i HAD A BREAK FROM CHEMO IN EARLY DEC TO MID JANUARY FINALLY HAD HYSTERECTOMY, DEBULKING LAPROSCOPIC ROBOTIC HYSTERECTOMY/ BC CHEMO WAS EFFECTIVE SHRUNK TUMOR AND NODULES, I WAS READY TO BE DONE WITH ALL THIS, THOUGHT I WAS DONE WITH CHEMO AFTER HYSTERECTOMY! I WAS TOLD I NEEDED 3 MORE CHEMO, I WAS ? MY HAIR HAD STARTED TO GROW IN DURING BREAK/ PEACH FUZZ, I HAD CARBOPLATIN/PACITAXOL AND AVASTIN , HAIR FELL OUT AGAIN ! SO BALD ?? AGAIN ? I HAD A PET SCAN BEFORE RESTARTING CHEMO ! CLEAR SCAN! ONC STILL WANTED ME TO DO MORE CHEMO! ONC SUCKED AT COMMUNICATING! I ASKED HIM HOW MANY MORE CHEMOS WAS HE PLANNING FOR ME ,HE SAID " WE ALREADY DISCUSSED THAT AND WOULD NOT ANSWER ME. MARCH 29 2019. LAST CHEMO ! APRIL 2019. 2ND OPINION @CANCER TREATMENT CENTER OF AMERICA NEWNAN GA. THEY DID THEIR OWN CT SCAN LABS CA125! DECLARED NED APRIL 18 2019 ! PRESCRIBED LETROZOLE/ SIDE EFFECTS: WEIGHT GAIN, SHOULDER NECK STIFFNESS/ LEG, JOINT KNEE STIFFNESS AND HAIR THINNING ! SO AFTER WAITING A YEAR FOR HAIR TO GROW BACK! ITS THIN AND STRINGY, I TRIED TO LET IT GROW OUT BUT IT LOOKED AWFUL! SO NOW I HAVE TO TAKE LETROZOLE THAT THINS THE HAIR I WAITED A YEAR + TO GROW BACK IN/ IVE GAINED 20#s OF THE WEIGHT I LOST DURING CHEMO. I HAVE TO TAKE LETROZOLE TO HOPEFULLY AVOID A RECURRENCE! HOWEVER, IF I DO HAVE A RECURRENCE I WILL NOT DO CHEMO OR RADIATION OR ANY OTHER TREATMENT AGAIN ! I WILL BE 60 IN DEC 2021! I WLL BE NED 3 YEARS ON APRIL 18 2022 ! IM HAPPY TO BE NED BUT IT FEELS LIKE THIS CANCER HAS TAKEN AWAY THE LAST FEW YEARS OF MY 50's I WAS 57 WHEN I WAS DX! CANCER HAS CAUSED ME TO LOOK 8O AND FEEL 80! IM AN EMPLOYEE OF MARTIN COUNTY SCHOOL DISTRICT, I HAD RETURNED TO WORK 5 MTHS AFTER MY LAST CHEMO! HARDEST THING IVE EVER HAD TO DO! RETURNING BACK TO WORK WITH VERY SHORT UGLY HAIR! LOW ENERGY EXHAUSTED AND EMOTIONAL MESS BY WED IN A GIVEN WEEK ! I STILL HAVE MY PORT BC I HAVE A DIFFICULT TIME WITH BLOOD DRAWS I ALWAYS HAVE, EVEN BEFORE CANCER ! I NEVER HAVE SEEN A SHRINK OR COUNSELOR BEFORE IN MY LIFE UNTIL CANCER IM ON AN ANTIDEPRESSANT AND MED FOR ANXIRTY WHICH IS HELPING ME ! I AM FEELING BETTER ABOUT THINGS LATELY! CANCER THE GIFT THAT KEEPS ON GIVING!
I'm glad to read that you're taking medication to better cope with your anxiety. I hope that it helps, as we all need to find ways of dealing with the aftermath of a cancer diagnosis and treatment. But hearing that you are still NED three years after your initial diagnosis is wonderful news.
I know the hair loss/changes are really hard for most women. I inherited my mother's fine and thin hair, which got even thinner as I aged. I was already wearing hats and wigs for years before I had cancer. But having a friend whose hair grew back very different (and better) after chemo, I was hopeful I might have the same result.
Unfortunately, my hair grew back exactly the same as before, but even more sparsely. It is discouraging, but after a couple of years, I realized things weren't going to improve.
Since your profile pic includes a photo of a lovely kitty, I thought you might enjoy this shot of my cat, doing his very best to stimulate my hair follicles after chemo, Sadly, his best efforts did not help, but he was very diligent in his attempts.
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Roll call! Thanks for kind words ! Your cat is beautiful !
Hello my name is Yetti, I'm from Hobe Sound Florida!
DX in June 2018! With stage IV B Figo 2. Endometrial endocarincoma
I had 6 rounds of carboplatin pacitaxol Aug - late Nov 2018.
Hysterectomy debulking laproscopic robotic Jan 16 2019 3 more chemo with Avastin.last chemo March 29 20192nd opinion CTCA. Declared NED by ct scan and ca125 April 18, 2019 Letrozole prescribed
Still NED 2 years April 2021
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