Declining radiation

Be_Positive

Wondering if there are any triple negative ladies out there who were recommended to have radiation but declined? Do you regret your choice?

Be_Positive

bump

Morgan513

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 

Be_Positive

Thanks for responding Morgan513! I too am young (34). I am just really worried about damage to my lung and especially my heart (left side tumor). Have you had any lasting side effects?

Guess I should mention that I'm having a mastectomy, not lumpectomy and feel like radiation is overkill.

Jodycat

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. 

Luah

Be_Positive: I would consult with both your MO and RO on this once you have a path report. Even with mastectomy, they may recommend rads if the tumour was/is close to the chest wall, or large, or nodes are involved.... or rads may not be necessary. I understand your concerns about heart and lungs - and since you are young, that is more of an issue as you have many years ahead of you... so put some hard questions to your docs on that. What are the relative risks of missing some cancer versus long-term organ damage? With TN, you really get one shot... if it recurs, not so easy to treat.

My RO assured me that rads have advanced so much in the last few years that they can very precisely aim... and miss your organs. He even showed me my "prescription" on the computer. So get all the information you need, and then go with your gut. 

Snobird

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.

Titan

bp.. i had rads but I had a lumpectomy..so it was a given..may I ask why you are asking this question about rads..?  I know you are concerned about the left breast because of the heart and lungs..have you talked to your rad onc about those concerns?  I didn't think that rads were given if you had a MX but maybe things have changed.

Rads are pretty easy when compared with chemo,...they were a breeze for me

HollyHopes

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...

Titan

Holly  what kind of pain?  My onc said to expect some tenderness..

SleeplessIn

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....

Hope60

I had a lumpectomy and radiation - also on the left side.  I'm a year out and no problems so far. I also had concerns about potential damage to my heart and lungs. But from what my RO told me, they calculate the angle of the rads to miss as much of your organs as possible.  Also, as it turned out I had to do rads lying on my stomach, with my breast hanging down through a metal plate  (pretty weird, I know).  This was actually because of my anatomy and where the tumor site was...but it had the added benefit of somewhat blocking the rads from my heart and lungs. Don't know if this would be an option for you, but it might be worth asking your RO.

Be_Positive

Thanks for sharing your stories and insights ladies! I appreciate all the responses.

I still haven't made my decision and will likely not until after my surgery when I talk with my radiologist. I have many questions for him and I know there will end up being a debate between us! That's just the way I am. I don't accept anything these doctors tell me without researching and asking 5 million questions. Why? Because doctors are human and they make mistakes too. Also, some doctors have always done things a certain way and they just they way they do it. Doesn't mean that it is right for me!

Knowldge is power ladies. Hope you all have a great weekend Only one more chemo left for me!!!

 Andrea

KimJay

Just chiming in here...  I just made the decision today with my RO not to do radiation treatment based on her recommendation. My core biopsy pathology report said DCIS grade 2 at under 3mm (they didn't even classify it as a tumor). Surgical pathology indicated no new cancer cells were excised with only LCIS removed with "extreme" margins. Thankfully University Hospitals in the Cleveland OH area are very big on analyzing everything and considering alternatives when your case falls outside the scope of what is considered "normal requiring the standard course of treatment".  FWIW, I will be following with tamoxifen.
It's still very early for me, so I'm still feeling a little uncertain that I made the right decision. Intellectually I know I have, but those pesky emotions get in the way and the "what if" games start to take over. I'm sure as the newness of my decision wears off, I will fell more comfortable emotionally with the decisions I have made.

adgirl5

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.

lintrollerderby

I declined rads and I own my decision even though I've gotten a lot of flack for it. I've not ruled out a mastectomy, but I didn't want rads. I have long-term (looks to be permanent) problems from chemo, but I felt that I needed to take a systemic-treatment approach. I didn't want to add more ailments from rads complications. I know lots of people said rads were easy for them, but many said chemo was also and I seem to be the type that gets the ugly complications. I've told my surg. onc., med. onc., and rad. onc., that if I have a recurrence, I accept it and I take responsibility for my choice. It's not right for everyone to decline rads, but I felt it was right for me. Good luck!

dlb823

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:

"Hi all,Sorry to have taken a couple of days to respond; things are hectic on campus at the end of the semester.I waited three months between the end of chemo and the start of radiation. Let me rectify that. The effing incompetent breast surgeon, who for reasons that are beyond me is the P.I. on an onoclogy trial, waited three months. I hear it's not unusual to wait up to two months, but three months is way beyond the norm. This said, my path results were so excellent the medical team apparently thought I was out of the woods, and the delay unimportant. Let this serve as a warning to everyone who is hesitating -- one is apparently NEVER out of the woods. Have the blasted rads.Axillary failure means the cancer came back in the underarm, probably because there were microscopic cancer cells remaining even after my "excellent" response to chemo. If not radiated, they start to grow again and form tumors that cast off cells that spread to bones and other organs via the bloodstream. Again, have the blasted rads. Do everything you can to stay SAFE.Love,

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.  

Luah

Deanna: Thanks for posting that. You always have wise words to share.

adgirl5

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

hi

i am not trip neg but a aggressive pathology aswell - her2 positive

i was recommended rads whether i had a lump or msx because I had LVI (lymphovascular invasion)and grade 3 some RO's consider this to be a positive node.  Once I achieved pcr with neo chemo I was told I did not have to do rads if I went straight to a bmx.  I decided to do the rads anyway because the whole node thing was weighing on me and another member sent me the same info that dlb is giving you.    I am not sure if I made the right decision but I felt like I needed to throw everything possible at this.  I am having a double msx with TE's in september (didnt do it right away b/c they don't do TEs here if you are doing rads)

I find a lot of people are in a grey area for rads - but if I got the recommendation then i would do it

adgirl - interesting what MD said about your prognosis with complete response - hope that applies to us triple positive girls with a pcr too!!!

adgirl5

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!

yellowdoglady

Just so you know, I took seven weeks of radiation after chemo because I had TNBC and 4 bad nodes.  I also have asthma, which got a bit worse after.  I'd rather wrangle with the asthma meds than with the alternative.  My stepsister was Stage IV for nearly 8 years.  Went through chemo four times, and then she died and I will miss her always.  But she was adamant.  I should not give up or take the easy way out.  I needed to kill that thing NOW!  Right away!  I'm hoping I did.   

Infobabe

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.

pupmom

infobabe, I found rads incredibly easy. I got red and itchy but it was hardly unbearable. My skin looks just like it did before rads and I am scheduled for a reconstruction 8/10. I have no breathing problems or heart problems. My understanding is that the Oncotype test only relates to whether you get chemo. Never heard about it having anything to do with rads. Why worry about a possible skin cancer when you are dealing with a real breast cancer? Just my 2 bits.

Best wishes!! 

Hopingforthebest33

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!

Alicethecat

Hi Hoping

I am similar to you - onc said tumour was taken out, clear margins, no lymph node or vascular invasion - but he still recommended rads.

The reason, he said, is because a grade 3 tumour that is HER2+ trumps everything, so he advised going for everything to beat it.

So, I'm half-way through chemo, starting Herceptin in the next round and on to rads in September.

Good luck with your decision!

Alice

adgirl5

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!

adgirl5

Sorry Alice.  I just noticed your HER+ status.  THAT makes more sense now.

Wishing you the best!  So many say rads are a breeze and have no problems.  Believe me, I'd be going for it had not all 4 specialists agree against them for me.

adgirl5

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! 

InspiredbyDolce

Even though this is an older post, I wanted to share some information.

I believe anyone who is automatically thinking they need rads with a BMX - (bilateral mastecomy), should wait first to hear the opinions of their medical team.  It is easy to look up each person's summary on here and see their stats, and then feel you need something because someone else had them.  Remember, several variables make up what is on the pathology report and someone who had a particular course of treatment could have extenuating circumstances. We don't see all the pathology components when we list our DX on here - they don't have all the pathology categories on here.  A micromet or a lymphatic invasion present (LVI) could be why someone with a BMX was offered radiation.  

My advice is to not have the approach of: "find the treatment, then look for ways to justify it".  But use the medicine / protocols as they are intended.  Evaluate your pathology report with your Oncologist/Hematologist and then have the appropriate course of treatment consistent with your unique pathology report.

You should consider not using radiation if it is not recommended.  If you use it when there is no evidencial need, then you might not be getting the full benefit from that one very rare, very valuable tool.  If you have been treated according to your pathology report, and radiation is not recommended perhaps consider keeping that resource available, if in the event you ever need it.  And at that time it could be more beneficial to you.

You could be burning a bridge too early, but using up a limited one use tool, such as radiation, when there is no obvious indication of need for it. I'm only referring to when the doctors say you don't need it, and you are considering it otherwise.  Consider all your options and recommendations, and ask what methods of treatment would be available to you, if you had a local recurrence after using radiation?  Not having radiation done when it is not recommended, means you you still have that unique tool to call upon, if you ever need it.

I think Adgirl5 brought a lot of good information as well to this post.