Let's have a roll call!

Forherself 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

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

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! 

I see it's  almost time to celebrate your one year anniversary of survivorship.  Thanks for giving us the opportunity to join  you.  

Rosesforever 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!

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 

Double 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 

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!

yetti 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!

 

 

 

Yetti,

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.

I was delighted to hear from you.  I hope you will continue to drop by every now and then