Hello fellow endometrial cancer ladies

[Supermary]

My name is Margaret and I live in NY

In early April I was diagnosed with Severe COVID and hospitalized for 11days I WAS NOT INTUBATED TG. But was on 100% oxygen NO ONE New during that time I had cancer

I received many chest X-rays but no scans and bloods were good

On June 16 after feeling pain in my side I went for a CST SCAN. I was diagnosed with stage 4 epithelial ovarian cancer . No predicting signs

I switched to memorial SLoane Kettering in June and started a plan of 3 rounds Carbo taxol then debulking then three more rounds of carbobtaxol

My first three chemo went great my ca125 was down to 58 from 900

My debulking surgery was hysterectomy , took out appendix , omteum , ten cm of intestine Resulting in temp iliostomy and small piece outside of bladder my surgeon said all visible signs of cancer removed hooray !! Ca-125 st 78

He was also certain it was OV cancer BUT the pathology Report disagreed and said the origin wad my Uterus si the diagnosis went to high grade endometrial starting in my uterus ( never had symptoms )

Due to abscess and pain with iliostomy it was reversed on Oct 30 do far no problem with bowels and the wound is slowly healing

I went back for chemo #4 on November 12th

My Ca125 was Back down to now 48

Today I went for chemo #5 during which my Dt during my treatment mentioned in that after my chemo #6 scheduled for dec23 and my scans in early Jan I MSU go fir a few more chemo rounds

It start a maintenance drug

Or be NED and take a break

We had always discussed in the past 6 chemo rounds then either a Avastin or other or NED

Never discussed more that 6 chemo

Anyone have any thought or ideas on this ? Terribly worried and confused

Of course I have questions into my doctor

Help or advice or knowledge on this is very much appreciated

Margaret

[Marielle1]

Sloan is the best hospital to be in. Best doctors and treatment

That’s where I was treated and cured thank God. Have faith in God and I will pray for you and you will be fine. Wishing you all the best 😜❤️

[BuildCommunity Ambassador]

Hi Margaret,

It sounds like you certainly have been through quite an ordeal! Wow. You are a strong person!

I don’t personally have experience with what you are describing so I don’t have any comments there other than when I was confused or concerned I too looked for second opinions.

Wishing you a speedy recovery!

Michele

[Nefa-Tari_SHARE Partner]

Hi MargaretIt sounds like you have been through a lot and has had more than your fair share of devastation.

In 2013 I was diagnosed with an early stage uterine cancer and was put on a progestin Megace as treatment. I went into remission after 9 months and then I had a recurrence of uterine cancer in 2015 as result I had a hysterotomy. 2018 I had 6 rounds of chemo for an ovarian cancer diagnosis. I had surgery to have both of my ovaries removed and like you my Omentum was surgically removed.

From talking to some of the women in support groups with a stage 4 endometrial cancer diagnosis, maintenance therapy is sometimes recommended to slow the growth or prevent, and delay the return of the cancer.

I wish you all the best in your journey to recovery.

[Miriamn57]

I have recurrent endometrial and have had three rounds of Carbo-Taxol. Will do three rounds more and I am not sure what is next. The tumors did shrink and CA125 came down from 77 to 24. Same question, what’s next after the next three rounds id it isn’t all gone. They talked about Keytruda but only if it is Estrogen positive.

[Supermary]

Everyone is different I did three rounds carbo taxol

Then major debulking surgery

Then three more rounds of carbo taxol

Declared in remission on Jan 6,2021

Now in a trial drug study for SELINEXOR

I get my first set of scans end of this month

There are many drugs out there it depends on many many factors what will be prescribed and what may work

Talk with your doctor is my only advice

Read up on your genetic testing results

And keep abreast in what trials are going on in your area if you can

Margaret

[EBradley_32904]

If you don’t mind me asking, were you already in menopause when you were diagnosed?

I ask because Although not similar, I was diagnosed with endometriosis at 29; have had a tubal ligation, endo ablation, ovary removal, and 2 laparoscopic endo removals already.

A endometrioma was seen 5 months ago, doc thought no big deal... well a month ago I had another US done and, well, the first time my dr saw the US report, was in front of me and he doesn’t have a poker face, at all. 🙄

I have a partial hysterectomy scheduled in 3 weeks, and by his reaction to my US, I’m nervous. He’s leaving my only ovary, to prevent early menopause.

Here’s my concern: I’ve had major pain for well over 60 days now (this time around); I urinate VERY frequently; have severe fatigue; major hot flashes (this has been 6 yrs now); severe constipation; eat very little, but no weight loss.

He’s scheduled the CA125 for me already. But I’m scared. I’m scared to get it done. I know hiding from it won’t make it go away, but I’m nervous.

Did you have, do you remember having any of the same symptoms?

Thank you for letting me pick your brain!

[Supermary in reply to EBradley_32904]

I wish I could say I had symptoms but honestly my periods were never that bad and I didn’t have pain as you described

In fact I thought I had a relatively easy menopause

I recall slight pain in the year prior to diagnosis with sex but I attributed it to getting older

What stands out in my mind is the pain that started in end of March 2020 in my right upper stomach rib cage area

As I had COVID and was hospitalized bilateral pneumonia 4/2/20 to 4/12 the doctors attributed the pain to a reaction to COVID from the pneumonia and coughing

Turns out they were wrong

No one tested nor knew I had cancer while I was hospitalized for Covid

I thought I was in the clear when released from hospital and my lungs were amazingly clear

But ... Two months after being released from the hospital from Covid the pain in my side got so bad I insisted on a test

I was diagnosed with the cancer at stage 4 on June 16 2020

The pain was the cancer and not the Covid

My point is these gynecological cancers can be silent killers

Just because you have endometrial issues doesn’t mean you’ll get cancer and just because you don’t have endometrial issues doesn’t mean you won’t get cancer

My advice is get all the tests done

Insist on tests if you must and get second opinions

We are our best patient advocates

[Kibb Ambassador]

Encouraging you to ask lots of questions and hoping you get answers in terms you can understand. Also do your own online research. Look up every medical term. Praying that what you learn brings some comfort.