What happens if I say no to radiation

I was not in your situation so I wouldn't normally respond but since no one has replied yet, let me give you my thoughts.

Is this is a reasonable decision?  Well, that all depends...

First, you need to find out your nodal status.  If you have positive nodes, then no, this probably isn't a reasonable decision.

Second, you need to find out what the surgical margins were.  If you have very large margins, then your recurrence risk will be lower and the overall benefit of radiation will be less.  On the other hand, if your margins are narrow, then your recurrence risk will be higher and you will benefit more from radiation.  Typically it's believed that radiation reduces recurrence risk by 50%.  If your recurrence risk post-surgery is 10%, then radiation may be able to take this risk down to 5%.  On the other hand, if your recurrence risk post-surgery is 40%, then radiation may be able to take your risk down to 20%.  That's quite a difference.  So without knowing your margins and your risk of recurrence without radiation, it's impossible to assess whether a decision to not have radiation is "reasonable" or not.

Why do you not want to have radiation?

edited to add:  Fearless, your reply came through as I was writing mine.  You certainly aren't "no one" .

I understand how you feel about not wanting radiation - I refused it myself after my diagnosis in 2004. Unfortunately, you won't find very many on this forum who have done the same or would support a decision not to do it.  

Is this a reasonable decision?  In my opinion, the answer is basically, yes - IF you're someone who is completely comfortable accepting that you might someday have a local recurrence which might possibly have been prevented by radiation and IF your surgeon got wide, clear margins. Some people are willing to accepting a bit more risk upon themselves in order to avoid certain treatment and that's OK - as long as you fully understand the ramifications of doing so. In general, about 60% of those who don't have radiation after lumpectomy never have a breast recurrence.  But even those who do get radiation have breast recurrences, so having radiation isn't 100% guarantee that it'll never happen again and radiation itself comes with it's own risks, both in the short and long term.  It sounds like you've done your homework, so I won't go into it any further than that. 

Any physician who refuses to care for you simply because you've decided not to have radiation after lumpectomy isn't worth having as your care provider. Find one, preferably an oncologist, who will respect your right to make treatment decisions.

I would suggest that you should do everything you can NOW to get rid of it; if ANY cancer cells remain, you risk not only a local reoccurence (more surgery, more pain, more hassle) but a reoccurence someplace else in your body; at which point you are Stage IV. I was GLAD for radiation. I never want to play this game again if I can help it!!!!!

Completely agree with Lindy that rads were the easy part! And like her surgeon, mine gave me only two options -- mastectomy or lumpectomy and rads -- said if I didn't feel comfortable with rads, that he could do the mastectomy. I never really felt tired from the rads, and my "tan" is nearly all gone. I really feel comfortable with having done rads. Now, taking tamoxifen for 5 years -- 1600+ pills -- not so comfortable, and was given option to take or not take, and for now at least, I'm opting out. But these are very personal decisions, for my situation, just didn't like the small benefit I may get from the pills versus the not so good issues from taking.

-----------------

When I grow up I want to be an old woman. Jan.'10 lumpectomy:3+cm grade 2 DCIS+1.75mm grade 2 IDC found in final path (surprise),stage 1a,0/3 nodes,25 full+5 boost rad zaps.
Diagnosis: 11/1/2009, ER+/PR+

I had a small, early stage cancer.  My surgeon said "you ARE getting radiation, or else you are getting a mastectomy."  That statement carried weight with me.  Although, I also worked through a very complex decision-making process where I concluded that my age - younger than 50 - was the main reason to have radiation. 

 My rad onc gave me the usual spiel at first encounter:  30% chance of recurrence without radiation, etc.  Even though my cancer was a rare subtype.  Luckily, she offered me the partial-breast radiation on the study, and I randomized to partial-breast. 

Well, just a few weeks ago, 4 years after diagnosis, my rad onc sadly and solemly conveyed to me that I probably was OVERTREATED.  She used that word.  She has seen more of my rare subtype in the past couple of months, has consulted some other docs about it.  If I were diagnosed today, she implied that full-breast radiation would have been way overtreatment, but she did say that partial-breast radiation was "about the right amount of treatment."  I respect that she told me this.  She even said that perhaps I didn't need the Hormonal Therapy, but she wanted to me consult with my breast oncologist about that (who wants to continue for a full 5 years). 

Don't know what to think.  I guess, overall, if I were to be slightly overtreated or undertreated, I would take overtreatment.  My rad onc used the word "cured" even though it is not quite 4 years out. 

I am where I am.  But I'm proof that sometimes they offer you the treatment without fully understanding the prognosis of your disease.

On the second half of your post HLilly, you can only swap tamoxifen for an AI instead if you are either postmenopausal or preapred to be made so by having your ovaries put out of action (rads, surgery or injection) for younger women tamoxifen is the only anti-oestrogen drug available as far as I know. It does work but I think it's about time they found one with fewer bad effects as there are more and more younger women now getting BC.

Hi all.  Like hLilly I don't want to have rads either.  I had lumpectomy and SNB yesterday and see my BS on Monday for results.  BS is at this stage pretty confident I'm just on the conveyor belt for standard treatment, but I am deeply concerned that doctors don't know what they don't know and well...it's my body so I want to be sure of doing what's best without using a WMD to fry an egg (lame attempt at humour).  I know that probably sounds silly, but I am reading lots of posts, lots of info and books by BSs that indicate there's a lot of different medical opinions and uncertainty about its efficacy in all cases.

Does anyone know of good sources of information about the latest trends or scientific thinking re radiation treatment for different BCs that I can look at?  I did find a brief article in th Nov 8 Time mag in the health, science & medicine section called Re-evaluating the Risks of Radiation. The article says that previous assumptions about radiation triggering mutation in healthy cells might be wrong and that middle-aged adults might be twice as susceptible as previously thought.  Before anyone panics it's important to stress that they're talking about a study of US & Japanese atomic bomb survivors - but to my way of thinking all new info is grist for my mill atm.  It goes on to say that previous estimates of radiation risks may have under-estimated one key factor - the accumulation of pre-cancerous cells in adults.  These cells, which increase with age, according to "a team at Columbia University", need only the slightest provocation to turn malignant, etc. The article - paragraph more like - finishes up with noting the findings are particularly applicable to screening tests like full body x-rays of healthy individuals - so probably not even or very relevant for breast irradiation, post lumpectomy, if at all. 

But I don't know if my guess is correct and I'm in need of more information on the subject so I can collate that with my results and work through the issues and talk it over with people who really care about me before committing myself to a course of action.  What I do know is that my BS will be expecting that I go along with his expert opinion - which of course I would do if I trusted that he knew everything there is to know about the subject, carefully weighed the pros & cons and recommended on that basis.  But what I'm gathering is that because it's the standard, not a lot of thought is applied...it's still at the "lumpectomy & rads is what we always do" stage.  So, help!!!! any information anyone can point me to would be warmly welcomed.  One other question - at what stage does my radiation or medical oncologist make an appearance?  Does everyone with BC see one sooner or later?  Are they more likely to be the person I could discuss risks v benefits with?  Thanks all in advance for any insights, answers, points of view you can contribute.

Thanks Leah - I know you're right about the article.  Guess I'm just concerned that there's more and new research out there and whilst the article I raised didn't seem too relevant to my situation it did kind of make me worry about complacency in doing what's always done without question. And I appreciate I'm in heightened awareness over-analysing mode...it's all a bit new! Got to say though, there's a wealth of info, insight and comfort on this forum - so glad I found it!  Thanks heaps for your sound advice. Cheers.

Celetas - IMHO, surgeons recommend surgery and Rad Oncs recommend radiation. Not everyone sees a Rad Onc. You might consider getting an opinion from an oncologist, someone who treats cancer patients in different ways, considering all the therapies available.

I did decide to have radiation, and I called and made an appt. with my Rad Onc.

Hi AICa - thanks for your post re Oncs.  After speaking with my BC counsellor today I gather on Monday when I get my results I'll be referred to a Rad Onc for my planning session, unless of course I need more surgery or other treatments first. So I'm just feeling like I'm on an express train and that there's no "well, here's the situation; now it's time for you to decide what happens next and to help you with that you might like to speak to xxx (insert name/speciality)". Which is why I am feeling the overwhelming need to go to appts forearmed with as much knowledge as I can.

In a nutshell, I just want to be as sure as I can be that any treatments I have are likely do me more good than harm.

Don't know if others will find this useful -  can only say I found it helpful to have a condensed, at a glance reference comparing known + possible (but not definite,and in most cases rare, etc) side-effects of various cancer treatments.  At this site

http://www.radiowaveclinic.com/?gclid=CJjLtsjGl6UCFQjObgodzyN1KQ

I found this side-effect comparison table

http://www.radiowaveclinic.com/pdf/rtc_table_q1.pdf

I do not know anything about this therapy or this clinic, apart from having a flick around their website.  I do not know if there's any basis to their claims, etc etc etc.  I do know from the reading I've done that some of the side-effects mentioned in the table are only applicable when particular areas of the body are focused on - but that is not made as clear as it should be in all cases.  So please, if you find it as helpful as I did, you're welcome; if not...please overlook it.  Cheers.

hlilly - thinking of you (hugs)  We're all at different stages but take heart from Claire's post.  As I type the sun is shining and I'm about to head off for a long beachwalk. Simple, enjoyable things to do daily is my recipe for calm.

hi grannydukes - pretty sure it's only available in Perth, Western Australia.  It also costs a small fortune.  Yeah, I'd like to believe it but maybe I'm a shade too skeptical for my own good.  Maybe others have heard of it, or better still, have done it or know someone who has???  I'd prefer that kind of recommendation to what they say on their own website.  Best of all I'd like a bunch of recommendations from respected medicos or establishments...but doesn't look like that's just around the corner!  But I did like their treatment/side-effect comparison table!

Just FYI, 21 years ago I had an aggressive bc to my other breast. I had rads along with chemo - at the same time. I had no lasting effects. I was very burned, even blistered at the time (nobody said anything about aloe or lotion); I was  weak, and couple of time my counts were so low that I briefly stopped rads. But after I recovered from chemo and rads, I went back to active exercise and a busy life. I had no heart or lung damage; the skin on my breast gradually returned to very white. It was a bit smaller than the other breast, but not noticeable in clothes. Maybe now I'll match.

My Mother had died of bc. I was a single mother; my first husband had died of heart attack at 43. I asked my drs. for every possible treatment to fight for my life. I got opinons from 2 surgeons and 2 rad oncs. I chose a lumpectomy, chemo, and rads. I'm glad I had chemo and rads; I believe they saved my life. After treatment, I remarried and got on with my life.

From another perspective, in August 2010, I was diagnosed with early breast cancer and had a lumpectomy and radiation utilizing the Savi breast catheter for radiation. My surgeon gave me all my options; mastectomy, lumpectomy with external radiation, or lumpectomy with Brach therapy. I consulted with the radiation oncologist and she said I was a good candidate for the Brach therapy. I asked her if there were any side affects from that method and she said "no". After speaking with the radiation oncologist I opted for the Brach therapy as I have small breasts and I could avoid the radiation damage to my lungs and heart.

Both my surgeon and the radiation oncologist said that there is minimal pain associated with the Savi device. I found that to be untrue. The Savi device inside a small breast does hurt. After a couple of days of having the Savi device inside my breast I was told that my flesh had grown away from the wire whisk type device inside my breast, and since they were unable to readjust it, they told me I would have the old one removed and a new one inserted or the radiation would not be effective. Had they told me it wouldn't be 10-30% effective I would have opted to just leave in the one I already had, but the doctor made it sound as though it would not be 100% effective. I feel I was mislead as I found out later it still would have been partially effective. Let me mention that they charged my insurance company $14,000 for a 10 minute procedure to replace the device. The new device was a size larger and it was extremely painful. And not only when it was inserted, it was constantly painful. I could barely move and sleeping was almost impossible. The pressure on my chest was unbearable and I told them that but they insisted I stay with the treatment. They prescribed strong painkillers and put me on antibiotics.

Let me mention that I have a very high tolerance for pain. I get cavities filled without Novocain and have had other surgeries with no pain and heal up really quickly. Not this time. While the radiation itself never hurt, the Savi device inside my breast hurt constantly and it pressed near my chest wall which is extremely painful.

No sooner had they finally removed the device that my side near my abdomen started hurting really bad! I got the worst case of painful shingles as a result of the Savi device and radiation. I was literally sick in bed for three months, sick with the nerve pain and skin pain that was excruciating! I was unable to move my body comfortably and even lost my appetite. I thought I might even die. Then, after the fact, the radiation oncologist tells me that, yeah sometimes shingles can result as a side effect from the radiation. It would have been nice to know this upfront. At least then I could have gotten the vaccination beforehand or have made a better decision. Knowing what I know now I would have opted for the mastectomy with reconstruction. Be forewarned that sometime doctors are not fully forthcoming and they only see things from their perspective.

Such complicated decisions!  For what it's worth, my father, a librarian, and I went on a rampage reading and reading and reading the studies from the major databases.  We determined that we just couldn't clearly state that deficit outweighed benefit in my case as a patient diagnosed under 40.  Add to that my anecdotal experience of those who refused rads and had it return three years later.

You haven't really stated what you found in your research that makes you want to say no to radiation.  Perhaps that's a good place to start, as so many of the women here are highly educated on this topic.

Lee7, a good radiation doctor will give you the straight story on damage to lungs and heart.  With newer technologies, the damage is far less than it was in the studies you may be reading.  When I told my radiation doctor I was worried about damage to the heart and lungs, his reply was, "We are, too."  And that said a lot to me.  With IMRT and other delivery technologies, they can minimize damage.  Ask direct questions. I did, I got most of the answer (though not all, asking and asking and deciding is exhausting).

I was left side as well, I had all the same concerns you did.  They are totally valid. Ask these very questions aggressively to your radiation doctor.  Mine gave me a good enough vibe that I went ahead. I also had the added burden/benefit of being diagnosed at 39.  Stepping outside the aggressive treatment grid at that age, in my summation, is most unwise, as there are no really good long-term studies on that group.  It made my treatment decisions painful, but clearer.