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Diagnosed with recurrent uterine cancer 16 years after hysterectomy

Ziva David
Posts: 3
Joined: Jul 2016

I had previously posted that I was diagnosed with recurrent uterine cancer 16 years after my hysterectomy (where uterus, one ovary and fallopian tube were removed). I cannot find the post to continue with the thread but wanted to add an update as it may be helpful to someone out there who may be as scared as I was when I posted on July 6, 2016. 

Since then I've started external beam radiation at Moffit Cancer Center where my radiologist has a positive outlook to successfully treat my cancer.  The thought is that some pre-cancerous cells were left behind when I had my hysterectomy in 2000.  I had a PaP every year and was clean until this year when i was diagnosed with recurrent uterine cancer.  Of course I was quite shocked as I no longer have a uterus and was never diagnosed with cancer after the biospsy in 2000.  Despite it being recurrent the outlook is good.  25 sessions of external radiation to be followed up with internal radiation (brachy).  I really felt helpless from the time I was diagnosed through all of the testing and uncertainty. I didn't have a good feeling about the outcome until I met with the radiologist at Moffit who had a plan and was positive.  Part of the reason I felt helpless was that you really cannot read anything about recurrent uterine cancer after a hysterectomy so long ago.  It was confusing and very scary. 

I'm writing today to let anyone in this situation know that there's hope for a good outcome and for anyone else who's had a "pre-cancerous' biopsy like mine in 2000 to have a second opinion on the biopsy.  I had no idea that I should have done that.   My surgeon at the time said I was fine and my hyperplasa was pre-cancerous.  I'll update again at the end of my treatment but wanted to share some good news.  Good luck to everyone out there!

 

2020 update-------diagnoise with a recurrence......metastasis to lungs........please ask your doctor about adding chemo in addition to radiation for those cells which are invisible on scans.

i have changed my care to MD Anderson.
obviously I'm devastated. I have chosen hormone therapy this time to avoid more radiation. It will also help with any cells that are out there and invisible today. This is an exper I do not want to repeat.

Double Whammy's picture
Double Whammy
Posts: 2835
Joined: Jun 2010

I can't imagine how upsetting your diagnosis was.  Unfortunately, this is not the first time I've heard a story like this.  Our own Hellie (Helen) had hyperplasia and has been dealing with recurrences for many years.  I wish data was kept on these types of recurrences, but I think it is kept only in terms of survival of 5 years.  I don't know if it is kept longer than that.  Maybe it is.  A woman on the breast cancer board has been diagnosed with ovarian cancer - even though she had her ovaries removed (along with uterus, etc) 23 years ago.  Her surgery had NOTHING to do with cancer and yet, some ovarian cells planted themselves somewhere and became cancerous.  I was on Tamoxifen for breast cancer for a number of years.  My oncologist said "well, I don't have to worry about you developing uterine cancer because you've had a hysterectomy".  Well . . . .

Best wishes to you and here's to that radiation doing the trick.

Suzanne

oldbeauty
Posts: 316
Joined: May 2012

Best wishes for success in your treatment.  I, too, am a recurrent uterine cancer patient.  I was diagnosed and "cured" in 2005 (hysterectomy and radiation) and recurred in 2012. I am almost 5 years in remission after additional radiation and daily high doses of progesterone.  I am curious about what your symptoms were and where your recurrence is, if you don't mind sharing.  Good luck! oldbeauty.

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