NED when will they tell you?

NED is that they can find No Evidence of Disease.  It is usually after a CT scan as a physical cannot tell what is inside you.  I can only speak from my own experience and my gyn onc dr said that I would have to have the CT scan to verify that nothing was growing inside me.  I had them quite a bit in the beginning but as years pasted I usually had one a year.

I had stage 3 c1 carcinoma sarcoma uterine cancer grade 3.  I only had 6 carbo taxol chemo treatments and no radiation.  My dr said that the National Cancer Institute had done studies which stated that chemo and radiation vx chemo alone had that much difference in recurrence vs no recurrence.  So my dr chose to not give me radiation.  As I stated this is what my dr recommended for me. 

Each person is different, as their cancer is different, one treatment does not fit all.  Best of Luck in your journey and if in doubt seek a second opinion.  Be your own advocate on your health.  trish

my doctor said pains that persist and worsen, GI symptoms like bloating, nausea or vomiting that persist and worsen, and of course any vaginal discharge or bleeding.

Does any of the others on the tumor board recommend that you have RT or is it just the one radiation onc?  

Things to weigh in your decision are that you are a stage 3a, grade 3 (high risk for recurrance) and like me your cancer originated in the lower part of the uterus (another risk factor that weighs towards recurrence). Was there any cervical involvement? What was the % myometrial penetration? Those, too, would increase risk of local recurrence. You didn't have any nodes positive, though (I had 1 on each side) and that's in your favor.

Don't base your decision just on the fear of all of the possible side effects. You just put yourself through surgery and chemo because you want to live. While those side effects in their entirety are very frightening (and you all know how I've been angsting about them!) so many others have managed to get through this before us and have a life afterwards. It's the most difficult decision because there are consequences that have to be lived with no matter what course of action is decided on. Keep on reading and keep on asking questions until you can make a decision that you can live with. 

You may find reading this article food for further thought:

file:///C:/Users/Owner/Downloads/Cancer_Network_-_The_Value_of_Pelvic_Radiation_Therapy_After_Hysterectomy_for_Early_Endometrial_Cancer_-_2014-07-08.pdf

Nellasing said:

Thank you MAbound

I believe the rad onc said it was the concensus of the tumor board that I should go forward with the full pelvic radiation.  I wonder if there is some report to be looked at?  I asked her to talk with my gyn onc because I see her next on the 19th and want some real info.

There was no cervical involvement.  The myometrial info states "carcinoma invades into inner half of myometrium (9mm depth of invasion in 22mm thick myometrium)"

No I guess there were 10 nodes taken and tested and nothing there.

I can't figure out what to do with that link??? 

Sure appreciate you taking your time- it is all just very confusing and overwhelming and yes, looking at all the posts I can see where many have gone before me with these same fears and concerns.

Sending big (((HUGS))) tonight and prayers for everyone here- looks like we've all had a rough day for the most part n one way or the other 

 

Just copy, then paste the link into your browser and that should take you to the article.

Looks like your myometrial invasion was less than 50% so that and no cervical involvement and no node involvement is all in your favor. I had 70% invasion, 2 positive nodes and cervical involvement. In the end, though, you have to decide if you can have peace of mind with doing what's recommended vs. worrying if you did too much (side effects)or not enough (recurrence). The lack of certainty whatever we decide on this treatment is what makes us crazy! 

Welcome Nellasing!  I'm echoing janaes.  This is a great thread.  I did not know about the different types of external radiation available.  Because of cervical invasion and more than 50% myometrium penetration, I've been advised to 5 weeks external and 1-2 weeks brachy therapy, after my first 3 chemo treatments so also am getting as much info as I can to discuss with onc.  Thank you for all the great info!  ~LL

Nellasing said:

Thank you LindyLu and Janaes

You don't know what you don't know hum?  I was really surprised also - back to researching and wrote another note to ask the Dr.

I find it so interesting that mine doesn't seem as involved as some and yet they are saying 6 1/2 weeks every day.  The only reason I can think of is that little piece they found in the peritioneal cavity as she was exiting the surgery.  Since she did the surgery she can probably say yes or no on that.  It's just odd that at one point they had to decrease my taxol by 25% and drip it slower for last 2 treatments and she said though she thought it was still best to do this treatment she felt she was "over treating" my cancer- how can it be over treating it on one hand and then go so overboard on the other?

It is a mystery wrapped in plot twist

Have a good evening everyone- prayers and (((HUGS))) for a safe and restful weekend

Nellasing, hmmm.  You will have to let me know how the not to your doctor goes.  Did you just give it to the doctors office to give to him.  Maybe i can try that.  I have been so busy trying to recover from chemo treatments i havent thought too much about what to do about this particular problem.  Believe it or not and i dont know if it is enough to keep me at eas but one of my thoughts were something like, I am counting myself NED because no one has told me i am not. Yea maybe they havent seen NED, yet it isnt good for me to sit and worry.  At least at this moment i am thinking that some how things will work out the way they are supposed to.