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NED when will they tell you?

Nellasing
Posts: 529
Joined: Oct 2016

Hi,

I am new here.  I just finished chemo 3 weeks ago- yesterday was just labs instead of treatment- felt GREAT to know that!!!

I see people saying they are NED- do they actually tell you that- if so, when?

I see my gyn onc the 19th for my 1st physical exam after treatment.  Will she tell me then?

I have been waiting for the tumor board to get back to me- the rad onc I saw said she thought I'd been staged incorrectly and instead of 3a should be a 4.  She is recommending 6 1/2 weeks full pelvic radiation.  This is not what my gyn onc thought- she thought brachytherapy and said it was just "icing" on the treatment.  They don't plan on a scan or anything UNLESS they find something upon physical exam.

Got the call today and rad onc said tumor board agreed that I was stage 3a but still recommending full pelvic radiation.

I know this is mixed up - just feeling overwhelmed with thoughts and info.  I do not want to do the radiation.  I am SO DONE being sick and having effects from everything.  I want to move on and LIVE MY LIFE.

Thank you for any info on NED and wisdom in advance <3 

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I was told after my first post-treatment scan that showed there was no cancer anywhere.

Nellasing
Posts: 529
Joined: Oct 2016

Thank you for your response- my Dr. says there will be no scans unless they see something out of the ordinary or I start having symptoms.... kind of scary.  She told me to put it in a box and go on with my life.

txtrisha55's picture
txtrisha55
Posts: 685
Joined: Apr 2011

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

Nellasing
Posts: 529
Joined: Oct 2016

I appreciate your input!  I am concerned about the combo of chemo and rad because of things I've read and heard for recurrence.  I also do not like all the complications it can cause with daily living.  There is no tumor to point it at and bowels particularly are sensitive and easily damaged... no easy answers.

I am working with a great Naturopath and I am leaning very much toward just working on getting my healthy body strong again so it can fight whatever comes. 

Onward- no other way- just today is one of those days and I needed to vent it out some.  Thanks much!!!  So happy you are 5 years is it? NED!!!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2613
Joined: Mar 2013

Feeling mixed up and overwhelmed is understandable.  It is that and so much more.  

After my treatment ended and I had my CT I was told "no evidence of cancer" - which I would take instead of "NED".  I was told I would only get another scan if the physical exam felt anything and I felt changes to my body.  (Note to self:  pay close attention to your body!!)

I did have radiation, but the radiologist said to me, "It is your decision if you want to  have it or not.  You will always have the right to decline it".  So keep that in mind if you don't want to do it.  

 

Nellasing
Posts: 529
Joined: Oct 2016

So many indicate that their Dr. was willing to do a scan- mine just refuses = doesn't want to expose me to unnecessary radiation.... hum....

Other than spotting- anyone have any other clues as to what I would be watching for?

Thank you NoTimeForCancer I am so happy you have that peace of knowing NEC- may it be that way always Kiss  (((HUGS)))

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2613
Joined: Mar 2013

Nellasing, some people don't mind getting all the extra CT scans, but there is a higher dose of radiation in those scans than regular x-rays, so I don't want scans all the time myself.

My visits are with my onc now and she always asks diarrhea, constipation, bloating, problems breathing...which tells me these are all signs of where potential problems could be. 

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

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.

Nellasing
Posts: 529
Joined: Oct 2016

much appreciated!!!

MAbound
Posts: 891
Joined: Jun 2016

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
Posts: 529
Joined: Oct 2016

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 Innocent

 

MAbound
Posts: 891
Joined: Jun 2016

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! 

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

Hi Nellasing,

When my gyn/onc said I should not get any more CT scans after treatment I asked "How will I know if I get a recurrance?" Her response: "You'll feel it" --end of story. Since my hem/onc was in favor and so was my new gyn/onc (switched gyn/oncs 6 mos. after my initial surgery), I had CTs every 3 months the first couple of years, then every six months the third year, and now no more to speak of at this time. Maybe my first doctor was right about not having them. I don't know, but I was nervous.

About pelvic radiation, did the tumor board recommend it?

-j

Nellasing
Posts: 529
Joined: Oct 2016

the rad onc said there were 17 people there and that they didn't agree with her wanting to up my stage to a 4 but that they did think I should do the full pelvic radiation. 

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Did they tell you the type of external radiation they are recommending? I was told that mine was three-dimensional conformal radiation therapy (3D-CRT), but there is also intensity modulated radiation therapy (IMRT), image-guided radiation therapy (IGRT) and the newest type, intensity modulated proton therapy (IMPT). Each has it's own benefits and risks but you should find out the type to be sure that you understand exactly what they are recommending.

At first my gyn-onc told me that I'd only have physical exams after treatment but I was able to talk him into CT scans every 6 months. I had the first one within 2 weeks of finishing treatment and was told that I was NED.

Also, fyi, I had one CT scan before starting the "sandwiched" radiation treatment (so that they could map the locations they would be targeting) and then x-rays each week during radiation treatment (to double-check that everything was still aligned). I've had no long-term side effects (so far, knock on wood).

 

Nellasing
Posts: 529
Joined: Oct 2016

No, they didn't tell me what type of radiation.  It's so hard that you go into this stuff blind and don't know the right questions to ask.  Thank you for that information- that will give me some more questions to talk to my gyn onc about when I see her on the 19th.

I'm so glad that you NED and that you aren't suffering long-term side effects Kiss

Prayers & (((Hugs))) 

janaes
Posts: 783
Joined: May 2016

Nellasing,Thanks for starting this thread.  I was still desiding myself what to do about my situation.  My oncologist said the same thing as yours.  I was so mad when i first left his office.  I really am considering going to a new doctor.  I dont want cat scans all the time but dont want to just go off any symtoms.  I appreciate everyones impute on this though.

LindyLu
Posts: 72
Joined: Sep 2016

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
Posts: 529
Joined: Oct 2016

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 Wink

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

janaes
Posts: 783
Joined: May 2016

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.

Moped7946's picture
Moped7946
Posts: 40
Joined: May 2016

Only that there were no changes. Now that I have thought about that I realize I have no idea what that actually means. I think it means that they can't truly tell anyone there is no more cancer in their bodies after treatment and surgery simply because cancer cells are SMALL and I suppose then even if there is only one left it might go undetected and then it might reproduce/multiply or attach itself to something important. How would they know for sure there is absolutely NO MORE CANCER? Maybe there needs to be someone who can create a cancer cell self-destruct genetic code and program the little bastards to DIE DIE DIE instead of multiplying.

 

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