Has any of you with DCIS skipped Rads?

miricurt538

Has any of you ladies with D

Has any of you ladies dx with DCIS opted to forgo radiation?  I had low risk DCIS, grade2. stage 0 with ER+PR+.  I recently(last week) received the results back on the OncoType DX test to show if I would benefit from rads.  My score was 18, which is quite low as it goes 1-100.  I showed a 13 % for recurrences of DCIS or invasive events in all and a 5% for invasive events alone.I'm not sure how these percenteges work as I know they are not as they seem.  Susan Love explains them in her   BREAST BOOK. But I didn't understand it.  Neither did, I think, My MO, who tried to work them on her calculator.  I've started to second guess myself as soon as I got home and I have this $4000 dollar test done and am now considering the dreaded RADS.  I want someone to tell me what to do and I know it AINT GONNA HAPPEN!!!I have to make the decision myself and I'm scared of making the wrong one.  Every time I have gotten in a TIZZY over something with this crap I have come to these pages and gotten help and uplifting.  Anybody??   

cookiegal

You are a pioneer with the oncotype decision on DCIS.

I can't tell you what to do, but two years ago I decided to skip chemo based on oncotype, which at that time had just started to be used on node positive.

Rads is well proven, but it's not free, there is a higher risk of skin cancer among other factors, plus the chance of lyphedema.

I think your choice sounds pretty rational.

cycle-path

miricurt, I don't understand the risk percentages either but there are some board participants who do. One is Natters. You might PM her and see what she thinks. And there's also Beesie, of course.

Did you ever read this thread? http://community.breastcancer.org/forum/68/topic/778944?page=1 

Blessings2011

I had 3 cm of DCIS, and a small amount of IDC (.5 mm and 1.5 mm) in the left breast.

Based on my history, I chose BMX with immediate recon.

Nodes were clear, margins were clear, no chemo, no rads.

Five years of Arimidex prescribed.

Never got the Oncotype test.

undercoverebel

I flip flopped like a fish for 5 months about this. I don't feel great about it either way. I'm low risk on one hand. On the other i'm in a riskier category due to close margins and age. However the risk is still small they claim. I'm happy to forego rads when I think about the lung cancer/heart attack risks. Of course my MO/RO don't have stats on that either. The one thing I was told by an MO and an RO is disturbing yet was meant to be comforting. They both stated that researchers are not interested in studying early stagers. And that is why there is not much data on us. My MO finally told me i'm looking for answers where there aren't any(after my 3rd quiz session w/him). He said it boils down to what decision you can live with. Mainly they feel as if it's not really cancer or such an early form that we're cured after having a BMX. I've been told that many times by several docs. Good luck.

miricurt538

Thanks.  It sure is good to hear from you.  It's good to know "Ya'll" understand.(I'm a Tn. gal by way of Miss. lol)  COOKIEGAL, My mo told me I was a pioneer but you would like it better if someone had paved the way before you, wouldn't one?  I had always thought I would be more scared of chemo than rads but I don;t know now!  CYCLEPATH, it makes me feel better about myself that you don't understand the risk percentages either.  I thought you knew everything! ha  BLESSINGS and UNDERCOVER, I think that you can feel safe after having a BMX but with a LUMP, I'm not so sure.  But margins were fine and I've been on Tamox for 20 days today.  So far no SEs to mention.  Today, i'm feeling that I'm okay without rads but we'll see how I feel tomorrow.  My MO held my hands and said a prayer, asking God to make me aggitated if I had made the wrong decision and to give me peace if I had made the right one.  I was thinking last night that I was feeling that aggitation but I'm feeling more peace today.:-)    loving hugs to all.

cycle-path

"CYCLEPATH, it makes me feel better about myself that you don't understand the risk percentages either. I thought you knew everything! ha"

 As I posted elsewhere, I'm reminded of a very old Saturday Night Live skit in which Chevy Chase portrayed President Ford during the Presidential debates. He's asked a complicated question, and Chase (as Ford) looks very confused and doesn't speak for a moment. Eventually he says, "I understood there would be no math in the debates."  

Honestly, whenever one of those discussions comes up about risk percentages I try and try to understand. But I don't. And I even took two statistics classes in college!

I believe the poster I was thinking about earlier was LtotheK. She has posted in the past about "absolute versus relative risk." I'm very sure this is an important thing to understand, and I wish I did. 

miricurt538

Cycle-path, I know that wasn't your point but I loved Gerald Ford.  Cried the night he lost the election.  Math has always scared me to death and when it comes to the  risk percentages, I just can't get my mind around it.  I read someone tonight advising someone to be sure to ask their ONC if the percentages they had quoted them was absolute or relative riskand it could have been LtotheK.  My granddaughter is working on her Masters and I asked her if she knew what I was talking about and she s aid she did remember sweating over that until she knew it at the time but didn't remember it anymore. 

      Anyway, right now I'm feeling pretty sure I will skip the rads.  I feel pretty good with the decision.  I think the chances of SEs of radiation (although the RO would never admit it) could be greater than the risk of getting cancer again.  If I do, I'll probably have a MX.  Thanks for being there.  The words I have received from this board since I started down this damn road has been so valuable to me I don't know what I would have done without it!!

dmorgan2

Miricurt- sending you a private message now

undercoverebel

Miri-I hope you are at peace once you make your decision. You really have to be. It's hard to know for sure what to do but we all have to do what makes us comfortable. You choose the lesser of 2 evils and for me it was risking a recur over getting lung cancer or a heart attack. Good luck.

miricurt538

Rebel, thanks for the good wishes and good words.  I am (for now anyway) at peace with decision not to have rads.  I just read some of you status(hope you don't mind) and I was delighted with some of your quick witted remarks.  That's the kind of attitude that helps u get through things like this and helps others get through it too.  Thanks for making me laugh.  Wish I had one of those puppies.  Sounds cute.

undercoverebel

I don't mind at all,if you get humor out of a BC thread then it's always good. We need something to lighten the mood sometimes. I can't imagine not laughing my way thru all of this BC stuff. The pups are cute,almost too cute to give away. A friend posted a pic of one on the drinking thread today. Hard to find among the other pics but you'll see it somewhere over there. It's white and lookes scared,lol.

burma

Hello, Miricurt538,

Am going through the same as you.  Had it resolved after clear on final path.  Surgeon seemed happy I would not have to have rads, but had to wait to learn what rads onc said.  She deems it necessary and sited only a few of the risks.   Am "the researcher" and have gone deeply into subject and find that there are too many problems that "could" arise.    Yes, like you I want that crystal ball but we are really on our own here.  In something of a tizzy, also, but at 73 just have a very strong feeling this is not for me.          (DCIS 0, Grade 3, with 4.4cm DCIS removed a few weeks ago. 

Feel good and believe at this point I want quality of life and do not believe the rads will provide that.  So will be opting out.  Rad Onc set up appointment for me to speak to a Medical Oncologist this Wednesday    Thinking, am sure, that with a "another perspective" and more information I might proceed.      

 My thinking is that if there is a reoccurence, IF, then deal with it then.  And, per research, there is still a chance, though smaller, that there will be a reoccurence.   Rads does not assure no return and raises heart, lung, etc. issues.  I cannot live with those.    

Have asked the Universe to make clear what to do, yet I still have a "Don't do it".

Do wish you well, as we are all alone on this and one part of mind is arguing with the other so we have difficulty seeing the way that is right.   Truly understand.     Hope you will let us know your decision which you can believe is the "right" decision.

It is so good to know others go through this; thought I was the only one!   Wishng you peace of mind.       Burma
PS   Have not heard of the test/scoring you had.  However, on the usual test NOW find if not having rads would be at "9" of "12" and that a mastectomy could have been the option.  But they thought I was doing rads, which I thought I was, before learning about it.

miricurt538

Hi Burma,  It was good to read your posting and to hear that you are going through the same thing. (although sorry that u have to).  Yes, we would have been safer with a mx but for me , again that would have been overkill.  And still not a guarantee.  I have decided to go with my decision to forego rads and am at peace with it, at least for the present.  I am wondering what the Med. Onc. had to say to you about the subject.  It's even more confusing when doctors don't agree.  The test I had is called the Oncotype DX for DCIS.  It is  new.  The lab that does it just started running it on Dec. 28.  I thought I wasn't going to have time to get it before time to start rads but the Rad. Onc. said I could wait until the middle of Jan.  It was a few days after when it came back.  I felt like my Med. Onc. would have been happier if I had chosen to have the rads but as you say, we must do what we believe we must do and what feels right for us.  I'm 71 and would have had left side rads and the RO said that there was no problem.  But I'm not sure he was completely honest with me.  I hope and pray that we don't regret this but we can blame noone but ourselves, can we.  No, we can't have that chrystal ball decision so we have to go with what we have learned and put together--and a lot of mine has come from here.                                                                                                                                                                            Best wishes to you.  Joyce