Has anyone turned down radiation?

duckyb1

oh Lord it just keeps getting worse, and I type 90 WPM, imagine ho frustrating this is trying to hunt and peck, cause the normal way of typing doesn"t worrk anymore

FireKracker

I refused the rads over and over again until my friends and family drove me up a wall to do it.i waited soooo long that there were no statistics that the rads would work.BUT !!!!! i did it.I absolutely refused the meds for 5 yrs.that shit has S/E that i just will not accept.Hey Im 70 yrs old.and if i take any of the meds i have a 2% chance of living another 5 yrs.are you kidding me.!!!!!!!

If i had the choice right now to do the rads again I WOULD DO IT. sure there are S/E.everything has S/E.with bc its chose your poison....

i wish all of you the best in your decisions.its a real tough call.God bless all of us fighting this giant monster.K

Merilee

I originally turned down Rads as I thought it was overkill with a double mastectomy, but I regret that decision now as I have had a recurrence. I am in Chemo for the 2nd time and will do rads when I am done. I can't help but think if I had just done them originally I would not be doing chemo which is absolutely hideous and the worse thing I have ever experienced. Just my 2 cents.

duckyb1

Granny almost done my rads...3 more boosts...........;then its on to the Pill that kills.......................I like you don't want to take it.........I'm 76, and with the LE, do I really need more shit to make me miserable............don't think so...................Script is in[ the drawer since I was told not to take it till rads are done........................3days,,,,,,,,,,,,,,,,,and I am dead serious I don't want to take it..............I would rather have 5 years with no more pain then what I have from old age.............then 10 years in misery...............my RO said "try it, you did so well with Rads, maybe you will do well with this too............if it is too hard on you....stop it....the SE go away almost immediately...............huge decision.............

FireKracker

hey ducky -----guess what ????i did try arumidex for 3 weeks.i had such stabbing pains in my stomach i thought i would die.then the dr.wanted me to try the arumisin.NO THANK YOU....thats just me.i know many people who are takin the drugs with no S/E...I would never tell anyone not to take it....maybe if i was younger i would feel differently but for me NO.....everything that has to do with bc suks.i did get edema in the breast from the rads.AGAIN CHOSE YOUR POISON....good luck everyone facing this rough decision and God bless.hugggggggggs K

mathteacher

According to the study reported by the BCO research reporters, radiation provided no overall survival value.

"There was no difference in overall survival in either trial between women who had radiation treatment and women who did not."

http://www.breastcancer.org/treatment/radiation/new_research/20060217a.jsp  

bdavis

Merilee.. I wouldn't beat yourself up over this.. if I am reading your signature right, you had a stage one, no nodes, chemo and a double MX... no doctor would even think you needs rads, right?? So you may have gotten a recurrance regardless, and at least now you have ammunition to fight it.

I had a stage one mass, one micromet node, chemo and will have a double MX, and the doctors say no rads..  if I had just had a lump, then I would have needed rads.

Is there something I am missing in your diagnosis? 

cycle-path

mathteacher: you're quite right, but there are two things to consider: recurrance and survival. The radiation DID reduce the recurrance.

Some women are very concerned about recurrance and want to be sure the @($! cancer doesn't come back. Others are willing to accept some risk.  

mathteacher

cycle-path,

Yes, for sure radiation for those getting lumpectomies does reduce the risk of local recurrence in 1 out of ten patients. That means it has no effect on the other 90%. This subject  has been studied a long time. The studies seem to show that there would be survival value if radiation wasn't so hard on the coronary arteries. Coronary artery disease doesn't show up for a few years and washes out all overall (death from all causes) benefit.

I understand completely that some women can't imagine the heart consequences ten years from now, that they are only concerned with a local recurrence in the breast in the next five years. Everybody makes their own decision. My only concern is that people be informed about the actual figures are so they can say to themselves,"this is why I made my decision."

I read the previous posts above and several of them were completely inaccurate as to the survival benefit of radiation so I thought I would jump in.

bdavis

I am not sure about the 10% benefit... That is not what I have been told at all... I have heard that unless you have DCIS, radiation will help with recurrance  and for DCIS is of no value... So for anyone with invasive cancer, radiation is of benefit, and can improve your odds 30-40%... For ME, i still chose to forgo the rads and have a MX instead.

mathteacher

The 40% number is a misleading "relative risk" number, not an "absolute risk" number for radiation which is 10%.

What you've heard and how the actual studies break down in terms of benefit to the individual are two different things. That's why I jumped in here.

Also, when you say "improve your odds" or "improve your "risk" you have to ask, "risk of what?" Local recurrence? Death from breast cancer?( breast cancer survival).  Death from all causes? (Overall survival).

These numbers make no difference to you anyway since you chose a mastectomy-- which more women are now choosing to avoid radiation. But it's important to know the actual, real world statistics of radiation.

duckyb1

What to do with regard to treatment is an individual treatment depends on a lot of things.........type of cancer, choice of surgeries, age, (which is very important), how agressive it is...........this doesn't just go for Rads, its the whole treatment.............I am 76.........I was told (by my MO) that studies say I do not need rads..............My RO completely disagreed with her..........I went with the Rads..............I have not had any problems..........of course some redness..............rash.......a few tiny blisters (not a problem), and a tiny bit of irritation under a tiny part of my underarm..................I had 28 treatments with 8 boosts.............I will be done in 3  days.................Keep in mind also..............right breast lumpectomy with Rads, is not as concerning as left side..............with the left there is more involvement of heart and lung..............I would never tell someone what to do, but for me Rads was a walk in the park.............I am not going to worry about 10 years from now.......if I live 10 more years , that is one hell of a bonus ...............Now on the other side...............I don't want hormone therapy............that to me is a killer....................I don't need to have hot flashes (never had them),, or more joint pain..............(already have that),....................so my problem is not with the Rads .........it has always been with the SE of AI's which is what they want me to do (Femara)....................have that decision to make in 3 days when I'm done Rads..............

Good luck to all, whatever you choose...............in the end .........its a crap shoot........and anyone who tells you different is "lying" to you .

bdavis

Yes... all the components of each person's case makes us individual... I am 48 snd so I need to do everything I can to be here and stay healthy for anther 50 years God willing... I have a left-sided cancer and so I of course had concerns about the heart and lungs and skin and thyroid (rads can give  higher risk of thyroid cancer from what I hear) and the MX resolvves all those concerns, plus gives me the piece of mind of the tissue being gone and future NEW cancers as well... nothing is 100% but I will be close.

Mathteacher... I was told by my MO that for ME, and my cancer, age, node status etc, rads would help me not have a RECURRANCE of BREAST CANCER by 30-40%... and I believe that... that doesn't take into account NEW CANCER... does nothing for that... or my current pappilloma or my right breast or any future complications I might have like thyroid cancer or any cancer for that matter... 

So... based on all of that I chose MX because the 30-40% benefit means nothing if I get a new cancer in either breast, or have to have MRIs every 6 months and biopsies etc... and then have complicaions with recon later due to radiated skin... ALL my doctors say I should have gotten rads and leave it at that, but I needed more.

DebRox

I sill bd going down this decision path soon. Right now I'm in chemo.



I had a lumpectomy back in April. I opted for a new procedure called IORT which is internal radiation right at the tumor site for 30 minutes once the tumor is removed. The probe radiates approx 2 cm beyond the tumor site in a 360 degree direction.



That would have been all the radiation I required, however, after path, I fell out of protocol as my tumor was upgraded in size to just over 2 cm. Going over 2 cm means the rad onc wants me to have the standard whole breast radiation, but I do not require the boost as that was satisfied with the IORT.



I am already dealing with painful cording, that I fear will turn into le. I'm being assessed tomorrow. I was hoping to forgo the whole breast rads as I worry about recon options if I require them in the future.



So far I haven't met with the rad onc, but they have called a number of times to find out when my chemo is over. I need to understand the risks associated with rads. I feel that since I had a high level of rads directly at tumor site, which does penetrate surrounding tissue, external may not give me much of a benefit over what I've already had.



I did mention to both the bs and the rad onc that I am considering a mx as I don't want external rads. My cancer is on my left side. They keep saying, don't go mx, but hey, I don't want the extra rads!

mathteacher

Bdavis,

Your doc was giving you relative risk stats. See the RELATIVE AND ABSOLUTE RISK thread on why that is misleading. Rads is really no substitute for a mastectomy once you factor in coronary artery disease and other complications. IMHO you did the safest thing. The founder of BCO had a mast when she was diagnosed with breast cancer last year.

bdavis

Mathteacher... I do understand what you are saying and I read the thread... at the same time, I feel that if I can gain a few % from one treatment and a few % from another treatment, then I need to consider my options... When it came to radiation, I knew to improve my odds of no recurrance, I needed to choose something (either rads of MX) and take ALL aspects into consideration and thus chose MX.

As for tamoxifen, I will take it because I am highly ER/PR + and really have no choice... But I do realize that a treatment, any treatment, they come with risks and we have to weigh the benefit and the risks FOR YOURSELVES and for me I chose MX after weighing everything. Of course I could have MX complications and regret that, but if I chose radiation and had a recurrance I would be super upset that I hadn't had the MX... its all what we can live with I guess.

Joanne58

mathteacher,

I was all set to decline rads when meeting with my RO.  Since I don't like disagreeing with medical professionals, face to face, I entered the appt. with hope that he wouldn't make the reccomendation.  I had a bilat.MX in Sept. and my BS didn't think rads would be necessary, but my onc. was on the fence and left it up to the RO's opinion.  After an examination and considering his thorough explanation of my pathology (better explained by him than my onc.!) I felt a strong and deep impression that rads was necessary for my case. It wasn't a fleeting thought--it was strong and sure and didn't get replaced by my previous decision from wieghing the odds. Also finding out that I had a margin of only 1mm from my chest wall gave me pause--it was just too close for my comfort.  Seems like most every treatment for cancer has risks and side effects and no 100 % guarantees for preventing recurrence.   I'm confident in my RO's recommendation, but more importantly, I'm confident in my own impression/feeling  to accept radiation. 

bdavis

Joanne... I have a question about timing... You had the MX in September and just recently met with RO?? Or you met with the RO back then? I have been told that radiation has a window of opportunity and can't be done at a later date....

Joanne58

Betsy--I barely made the window.  Finished chemo Dec. 30th and had rads March 23 to April 26th.  My mapping took longer--the onc. needed extra time to design the plan-- due to my pectus excavatum (caved-in chest).  All went well, so it's up to the tamoxifen and Herceptin from here on out (and exercise and eating less sugar and avoiding BPA and doing self exams, etc. etc, and staying positive )

MrsChorlton

I turned down radiation, and I think that was one of the smartest choices for me ever in my life!

feel free to pm me if anyone wants to know my story

CTMOM1234

MrsChorlton - From your bio, I see that you also turned down tamoxifen. I, too, turned down tamoxifen, but did do rads -- I respect that you are trying an organic approach.

MrsChorlton

Rads didnt make sense to me, neither did Tamo. However that is because my cancer had a very low iq, short bus low grade idiotic non organized cancer. If it would have been stage 2 or grade 2 or 3 I would have thought differently, but for me those treatments seemed very over the top.

They really push the rads though and I had to stand my ground and go with my gut. Not easy to do when they are telling you a bunch of stuff to sway you the other way. 

duckyb1

No one pushed me to get Rads.....................I was told the %'s, and I made the decision........................I had 36 treatments which included 8 boosts..................I had no problems at all.....................I was 1.1cm, no nodes, Stage 1, ER,PR +Her2-..................was not willing to take the chance............good margins, too...................just was worth doing................I never had to give up wearing my bra..............was not sore, slightly red, and the RO, and the techs were wonderful.....................

I was at a Regional Breast Cancer Center near Phila., and my RO called me her Poster Child for Radiation therapy..................I am blond, blue eyed, and slightly fair skinned, although I do tan well......................don't turn down Rads if it gives you a better chance at life................It isn't worth the risk........................trust me..........you will do well.

bluewillowskys

i have always had a problem with authority figures like doctors. I am always too nervous to speak up and ask for different op wish I was more knowledgeable about my DCIS and the different treatments for it. I wasnt really ever offered any choices in my surgery or treatments. They pretty much said this is what you have, this is your surgery date, this is the type of radiation treatment you will get and this is what you are going to do, etc. I was never told of any different options for my care. And now I feel like I am stuck doing 6 weeks of rads despite the distance i have to travel and lack of REAL solid family support to help me get through it....when there is no 100% proof or certainty that my DCIS would have or will become invasive cancer yet some other women who have had or do have invasive cancers only have to do 2-3 weeks of rads. Wouldnt it stand to reason if 2-3 weeks of rads for invasive cancer works for those women, that doing 2-3 weeks for DCIS would ALSO work  without having some 10 yr long study before allowing women to have that option ? I am sorry if I am not explaining myself or my point well...its just so very aggravating to have doctors get me scared stiff that I HAVE cancer and need all this surgery and treatment , and then have Dr. Anderson tell me yesterday  that "technically you DONT have cancer"...thats "its ONLY pre-cancer".....regardless of it being ACTUAL cancer or not I am being subjected to the same types of surgery and tamoxifen and in a lot of cases MORE radiation to my body then many women who have ACTUAL cancer have to undergo. Shouldnt I be offered some REAL options with studies to back up WHY the doctor is recommending the treatment, instead of just telling me basically this is the standard protocol because no one has taken the time to come up with or study forms of less invasive treatments for DCIS ?  I am feeling tremendously overwhelmed right now at this point in my life in general and then having to undergo 6 weeks of radiation and driving ALONE 3 hours everyday to get it and that it may or may not do me any good because there is no proof my pre-cancer would have turned invasive and risking the possibility of actually getting REAL cancer because of the radiation and tamoxifen....its just all too much for me to take I think...but they have used scare tactics on me and now I fear that if i dont follow through with their standard protocol I will end up getting real invasive cancer....so i dont know what I am supposed to do right now...I feel so angry and so lost and so trapped into a treatment regimen that I dont know if I mentally/emotionally can follow through alone. Damnit why cant there be an in person support group in my town instead of way over in Madison.

bluewillowskys

I am feeling a little better this morning. Still angry but hopefully i can make it through todays treatment without crying .

duckyb1

bluewillow...............Trust and faith in your Dr.s means everything.............I am assuming you had no where to get a second opinion?.................that would have been your next option................you can find out a whole lot by researching your diangosis on the computer.............I got a wealth of information there.

I am fortunate that I had the best I could have asked for through this whole ordeal........we all deal with ups and downs going through this ......I had 36 Rads, and finished yesterday ..........I don't regret it, at least not now..............will I in the future, who knows, I just know at the present time I did what I thought I had to do to assure my survival.................Do any of us really know which decision is the right one..................you can only do what seems at the time to be the best choice, and hope it was........................If you have to "cry", "cry", but don't get too overwhelmed with all of it...................don't let cancer get the best of you ...............Fight like hell, and be your own advocate.................and remember.......................all those Dr.'s put their pants on "one leg at a time" just like we do.......................ASk all the questions you need to ask, and if your not satisfied with the answers, ask again, until you understand exactly what is going on..............A good Dr. will respect som'eone who has their own interest at heart.............remember this is your body , no one elses, and you are the keeper of it ...................never let anyone tell you what you can and can't do with your own body .................good luck, and come back often............the ladies here are wonderful...............they all helped me through my journey with cancer......hugs to you

Beeb75

Actually, radiation does offer a small survival benefit, according to longer-term studies:

"Effects of radiotherapy and of differences in the extent of surgery for earlybreast cancer on local recurrence and 15-year survival: an overview of the randomised trials." Also from the Lancet, 2005.https://iubcrc.iupui.edu/ccm/EBCTCG_XRT.pdf

It says: "...at least in the post-BCS radiotherapy trials, and among women with axillary clearance and node-positive disease in the post-mastectomy radiotherapy trials, the radiotherapy regimens that were tested produced moderate but definite reductions not only in 15-year breast cancer mortality but also in 15-year overall mortality."  

Beeb75

The study Mathteacher referenced earlier only applies to post-menopausal women with small, ER+ and/or PR+, node negative tumors. They had a very low risk of decreased survival due to BC in the first place. And even that study says they benefit from radiation (in terms of recurrence.)

However, for those of us who don't fit that study population because we are ANY of the following:

* pre-menopausal

* tumor larger than 3 cm

* node-positive

* hormone-receptor negative 

Radiation might also offer a survival benefit. For specifics, see the study I posted above. 

dougbrimor

Hi, I am 52 years old and just had a less than 1 cm estrogene/progesterone positive biospy return, after the lumpectomy that produce clear margins, and I did not have the senteninal node biopsy done.  They are said that the protocol is 6 weeks , 5 days a week of radiation and 5 years on TamoXifen.  Everything in me is screaming do not put that stuff into your body when I have such a weaken immune system, and after reading Dr. Lorraine Day, Chris Beat Cancer and the Halelhuiah Diet website and beat cancer.org, I am starting to believe that my gut is right.  Has anyone chosen to use alternative treatment?  I would love to have some conversation about this, and hope there is someone out there.  Thanks

cycle-path

dougbrimor, there's an alternative medicine section right below this one. You'll find lots of people there who've been involved in some sort of alternative/holistic treatment.