Declining radiation

I had radiation and felt fine with my decision.  I chose a lumpectomy, so I felt it was part of the package.  Also, I wanted throw everything I could at it.  I'm younger and able to deal with it.

Lorrie 

You cannot tell.

 I fought against the idea of radiation.  I am 70; I don't need these major risks to my health.  I can accept that I have only a few good years left (I think) and I don't want them ruined.  I have just finished one book and am desparate to get the other done.

 So I gave in with fear and trembling.  And I utterly sailed through.  No burns from rads.  Everyone amazed.

Of course, I just reckon God will punish me in some other way.  Still, I don't think you can tell. 

My team always recommends rads when the tumor is grade 3 whether MX or LumpX. I had rads after a LumpX. I am 5 yrs post rads and so far the only side effect I had was frozen shoulder which I resolved with PT. I did develop a recurrence at 4 yrs out and I am currently 5 months post stage 2 BMX/DIEP. If I had it to do over I would have had the BMX/DIEP the first time but it was not offered by the PS I was directed to.

I had 35 raditaion treatments along with lumpectomy and, of course, chemo.  I am five years post diagnosis and have pain and discomfort every single day from the radiation.  I would choose mastectomy and avoid radiation if I had it to do all over.

Wishing you well on your journey...

I dont think Be-positive is so concerned about immediate "smaller" side effects like radiation burns, but more about the supposedly small, yet very real real long term side effects that may not show up until 5 or 10 years later. SE like serious heart damage or lung cancer.



Although I am not TN, I, too, am in doubt whether to do radiation or not (especially since I will probably not do Tamoxifen either), especially since I already did chemo. If chemo is supposed to kill off distant cancer cells, if there are any, then why would it not kill the local ones at the same time?! - Makes absolutely non sense to me....

My MD Anderson RO said a resounding no to rads.  At the consult she was very convincing about the risk benefits- (other cancers, pulmonary & heart problems.. etc.)  And I was stage II..  node negative, BRCA positive & achieved a pCR after neoadjuvant chemo.   She even went on to say there were no triple negative patients returning with local or locoregional recurrences... or distant mets in MDA's history with my stats.

Very hard to believe...(especially local recurrences)... with a skin sparing BMX you can't remove every little bit of tissue and rogue cells can show up later.

I'm in a true quandary.   TN is so aggressive..  I've felt i NEED to throw everything at it upfront.  Also I had no vascular invasion.  

It's a real eye-opener when you read of the BMX gals on this forum with stage 0 DCIS having local recurrences very shortly after surgery.  Most of them aren't TN.

When I joined BCO in 2008, one of the women I immediately gravitated to was a very wittty, tell-it-like-it-is professor at the University of Texas who went by the screen name HeatherBlocklear.  She was also TN.  Although I'm not TN, something she posted about rads for TNs still rings in my subconscious as one of the most heartfelt posts I've ever read.  Since she's no longer here to chime in, I found what she'd written in response to a very similar question, and am reposting it here for you, because I think this is exactly what Annie would tell you if she could:

Annie" 

Of course, Annie's heartfelt advice may not apply to every situation, nor do I know what advances there might have been in TN-specific tx protocols since 2008, when the above was written.  But if you have a medical team that you trust, and if they are strongly recommending rads, this may not be the thing on which to second guess them.  JMHO...    Deanna 

PS ~ Just wanted to add...  I did have rads, very reluctantly (left side, after a mx) because multiple rad oncs told me I should. And it was no big deal, although I did use some complementary things like healing touch massage.  

Deanna- Compelling post.  I TOTALLY agree, if rads are recommended please go for it.  Yes, there are long term risks, some very minimal.  After BMX IF I hadn't had 2 radiology oncologists say the same thing along with my medical onc. - No to rads, I'd SO be "going for it".... regardless of MX. 

Lympho-vascular invasion is another component from your path report that has to be noted as an indicator for rads, even with mastectomy and no positive nodes.  TN's second name is tricky negative.  Protect your health ladies!!!

rozem- lymphovascular invasion is still a grey area.  Some docs; ROs & MOs say it counts like a positive node.. others totally disagree.  At MDA LVI was a non-issue and that wasn't filtered into my recommendation against rads.  But honestly, if I had LVI I would investigate a little further.  Grey areas in rad therapy is so controversial.  I think you have to consult a at least a few if not more top-notch experts.  The main thing is for it to make complete sense for you-- and to bring peace of mind so you can move forward and that's exactly what you did. Kudos!

Well, I have been posting all over the place because I would like there to be no rads.  

Besides what you see below, I am 76 and for all the reasons stated above, heart/lung, burns, cellucitis, burning, peeling and future possible skin ccancer, you can see why I don't want to spend my remaining years dealing with that.  Pulling an oxigen tank, congestive heart failure, more cancer.

My 2 oncologists refuse to order the Oncotype test.   My MO sadly misinformed or lying.  So I am left ranting and raving.  I have emailed the Oncotype lab and they responded promptly so there may be more to this story.  Otherwise I am scheduled for a simulation next Monday, June 11.  Grrrrrr.

I wrote this in another section, but thought I would give it a whirl here too. I was diagnosed back in august 2011 I was pregnant at the time , and had to have surgery first , I had a mastectomy . I then went through seven rounds of chemo, I had all my scans done after the baby was born and they all came back clear. I asked the oncologist if I still needed to have rads done as I had no lymph node involvement, clear margins, chemo and clear scans. She said no, I would not have to have them. Now two months later I get a call today from the radiologist nurse telling me I have a appt to discuss rads ?? I am finally getting my life back on track , recovering from chemo and now this, am I wrong to not want to go ahead with rads? I should mention my tumor was 8 cm . any opinions would be great thanks!

Alice,

That's strange.. but rads are so controversial.  Take a poll of 1000 expert TN doctors world-wide and you'll get a split yes and no.  I admit, I am surprised in your case as a stage IIa with no LVI they're suggesting rads.  Still, I believe especially if you're very young to be aggressive upfront.  You have to go with what you feel is right..BUT, please do your homework with top-notch MOs and ROs first.  This is UTMOST when faced w/ difficult decisions- which is ultimately yours. 

Best of luck!

Hoping...

You dictate what you want AFTER talking to more than one specialist.  It really is your decision.  But be totally informed first.

Sounds like you're a IIb which means your tumor was larger than 5 cm but there was no spread to axillary lymph nodes.  If you haven't already, obtain a copy of your pathology.  There should be information about whether or not you had vascular invasion.  As you've already read here, this plays into the equation too.  Having an appointment with the radiology center doesn't necessarily mean they'll recommend rads.  Maybe your radiology oncologist will discuss the implications of treatment and tell you the reasons why s/he is OR isn't recommending.  That's what happened with me on the first consult.  Since then I've obtained more opinions.  But, if it's been 2 months since your last chemo you'll need to make a decision PDQ IF rads ARE strongly recommended by more than one expert.  I'd approach it gaining enough info up front- which you're doing by posting here... and also from totally understanding your path report. Then listen to what this doctor has to say, ask as many questions as you need to satisfy your peace of mind.. including another consult/opinion.  You could go back to your MO and get his/her opinion too.  THEN follow your good instincts. 

Honestly, none of us are qualified to tell anyone what to do re: radiation. This is so controversial and falls in a grey area of medicine in some instances.  Everyone has individual circumstances.   I don't like the idea of doctors being too cookie cutter on their recommendations before exploring all aspects of your individual pathology, what area in the breast your mass was, health history, age.. and your own feelings about rads.

Whatever you decide, I wish you the BEST of luck dear heart!  Congrats on the birth of your healthy baby!  What a blessing! 

Take good care!