Do you regret receiving radiation treatment?

My thought was I am throwing everything I can at cancer!   I have a minor residual cough, but given the alternative, I felt radiation was the way to go for me. I didn't want to look back with coulda shoulda.  That being said, we all need to decide what is best for us as individuals.  

Be well

Nel

that would be since not sense...my bad

Hi, I am in the process of having to decide about radiation again. It was an unpleasant, tiresome, expensive and inconvenient treatment. I experienced tissue "burns", and some permanent changes to breast tissue. I had pressure in my lungs when taking a deep breath shortly after starting rads, and that happens sometimes still. This time, I have a lower stage tumor, but a higher grade, and I am not sure how to assess benefit. I have believed that her2 negative, er/pr positive tumors at the lower stages and grades are the least likely to cause problems with mets. I almost think those of us with this set of conditions have a diffent disease all together from Her2 positives, or triple negatives, or stage 3 and 4 people.

My inclination is to not do the rads this time. If a way to calculate risk with and without radiation exists, I'd like to see it.

My best to you,

Mame

SccS ~ I had a mx.  RT was strongly advised for me by UCLA and a local rad onc based on an unspecified margin (on a bit of trimmed tissue that contained a surprise 1mm bc lesion), plus a positive node with extracapsular extension.  From what I gathered from talking to several rad oncs -- although some RT centers think of bc as "basic bread and butter RT" (a phrase I actually heard when I was shopping for one), I gathered that there can be significant differences between RT centers, and that it pays to find the best one in your area.  RT is not an exact science, and IMO, it's best to go to a place that does a lot of RT for bc, so that you get the kind of expertise that only comes with experience.  My bc was left side, so I was very concerned about potential heart & lung damage.  But those fears, as well as the fear of LE, were totally alleved by a top notch rad onc who was able to explain to me why those things should not concern me based on my body type and other factors about my dx.  

I had 33 tx and no real damage -- just a bit of burning in the very last few days, equivalent to a bad sunburn.  Emu Oil did a great job of protecting my skin.  I went through rads with a support group here on BCO, and none of us had any significant damage or lingering SEs.  Given the same situation, I would absolutely do it again; but after hearing some horror stories from other women, I would definitely make some comparisons, and only do it at a top notch facility, assuming that rad onc can allay any concerns re. permanent damage.  

Good luck to your wife!    Deanna

I'm stage III with extranodal invasion so the rads were extensive, but I had no real SE from my radiation, just a very dark and ugly red color for a few weeks, but no wounds and no pain. For whatever reason I never even had fatigue (unless you count just being plain tired of going everyday for 6 weeks!).

ETA: In answer to your question, no, I don't regret it at all, but even if I'd had some side effects, I still think I would feel the same way.

I had some of the worst loss of tissue during rads that a person could have. I was getting bilateral radiation. I'm very large breasted -- I cup. Most women do not have the tissue loss I experienced. I will say it healed very fast. I had bilateral lumpectomies. I'm not sure I know how to answer the chest wall question. The entire breast was treated on both sides which included a known "clip" of about 10% of the lung on both sides. Years ago they did breast radiation straight on on the 90 degrees, which is why they now know to go on angles and avoid organ damage. Everything in this process can cause other stuff, but cancer is sneaky and it's important to swing with the big bat. Good luck.

Remember that rads are to reduce local/regional recurrence. It does not really reduce mets. There was some controversy as to whether it prolongs life, but if you have local/regional recurrence, it seems that mets and lower survival rate would be logical assumption. I chose NOT to do rads, and have had 3 local recurrences, and am waiting to see if I have mets. My fear prevented me from doing rads, and it may have cost me dearly. Then again, I could have done rads and STILL have had recurrences, there is no way to know for sure. Would I choose rads now, knowing what I know? I don't know for sure. But I am mostly at peace with myself for the moment.



It is a tough decision. Listen to your inner voice. Don't let fear prevent you from making the right choice FOR YOU.

I had a lumpectomy + radiation.  I had no choice about the radiation because I was having a lumpectomy.  The two go hand-in-hand.  The only side effect I had was during treatment was tissue burn.  I have experienced no heart problems, no lung problems, and no lymphadema (I had underarm radiation, as well).  Before my radiation treatment was finished, I was already walking five miles a couple of times a week.  During the summer after treatment, I was walking twenty miles a week, five miles at a stretch and cycling, at least, thirty kilometres a week.  I have experienced no long-term effects as of yet and I am still very, very active.

I have no regrets.  It was much, much easier than chemotherapy.

Radiation was not really discussed as optional.

Neither was mine, but with lung disease I skipped it.

I have LE now and did NOT have rads ( I  cant stand the fact ppl think it somes from rads ) and only 2 nodes out/  LX with SNB.

Good Luck.

I don't have all of my information yet cause I was just diagnosed yesterday and so I don't even know all of the pathology of my BC but, I am a smoker and have been for many years and it is my left breast so I am really scared of rads hitting my lungs. I know that there are also worries of heart damage on the left side so I am truly petrified of having rads and I am also petrified of NOT having rads.

Sigh...this decision may be the hardest one of all of them. Since I have not even had a lumpectomy yet, I don't know exactly what I am dealing with. It "looks like" DCIS, but my understanding is that until final path report, I won't know if there is any IDC lurking in or around the lesion.

This stuff is all so new to me and so scary! I am following the thread to see how many have skipped radiation and have fared well by doing so. Don't know my ocnotype score either so will have to try annd find that information out first? Is that right? If a low score then I will not have to have radiation perhaps?

Anyone who can shed some light on this, feel free! Thanks!

On the flip side of your question, I declined rads 5 years ago and have no regrets. I was in the grey area, and after consulting with 2 rad oncs and reading a lot in medical journals, I declined.  This is what I just posted on the thread entitled Electing to do or not do radiation if in "grey area:

I also fell into a grey area - one positive node but with no extra nodal extension, Grade 3 tumor, excellent margins.  There was no question about chemo - I definitely had to do that one.  Rads was different - I was in that dreaded grey area.  I went to 2 consults with different rad oncs, and also did a lot of research on my own in medical journals. I was discussing all this with the one rad onc I really liked and asked if she could give me some figures.  She told me that of women with my same status, 90% are radiated for no reason.  85% will not recur, rads or no.  5% will recur, rads or no.  Therefore, there was only a 10% chance that rads would benefit me. 

After weighing all the pros and cons, the risks and benefits, I declined rads.  One rad onc was very distressed and told me that I was making a mistake to decline rads.  But this was also the same rad onc that never mentioned lympedema as a possible side effect of rads, and who wanted to do not only the chest and axilliary area, but also the nodes around the breastbone even though my tumor was on the outside upper quadrant, so I really didn't have faith in his pronouncements.  The rad onc I liked said she was comfortable with whatever decision I made - she'd be comfortable if I opted for rads and comfortable if I declined.  That was 5 years ago, and I'm still very comfortable with the decision I made.  But each of us must make our own decisions, and gauge our own tolerance for risk v. benefit.  What was the right decision for me might be the wrong decision for someone else.

I would get consults with a couple of rad oncs.  Also, do research in credible sources, like medical journals.  Then take a break of a couple of weeks (if time allows) and decide to not decide during that time.  Set a date a few weeks into the future and tell yourself that you will not make a decision until that date.  That will give your unconscious time to process everything you've learned.  Make your decision on that chosen date.  Revisit that decision in a week.  If your gut is telling you that it's the right decision, then it's the right decision for you.  In the end, all you can do is make the best decision you can with the info you have on hand.  Once you've made the decision, don't look back.  You've done all you can. 

I did not have rads even though I had a lumpectomy. My reasons were: part of my lung would be damaged, the bottom part of my heart would be in the radiation field, possibility of rib breakage. only 3% benefit.

But, I am over 70, have severe ostoporosis, and atrial fibrillation so was very worried about the heart and ribs. I am also a runner so worried about the lung damage.

You know this decision is so darn hard.  Saw my RADs Dr today she basically told me I had to have rads for 35 weeks because I smoke she could not cut it down.  The lung damage is a reality if I have them.  She told me the percentage of women she has seen over the last 30 years and those without rads mostly have a reoccurance and then it is much worse and some times too late.  Very Grim....I have 12 days until I start my first treatment so I just don't know what to do.  I do believe in my heart that there are bad cells in my breast just waiting to develop into cancer.  I had one small tumor and a very very small one that had branched off from that one and started to grow.  I suppose I could have a masectomy instead but then I have that darn single positive node they took out to worry about but chemo was rejected because of my reoccurance rate onco test of 18.

I had bilateral mastectomy a year ago, but did neoadjuvant chemotherapy (I only had BC on right side, but tested positive for BRCA2 so had prophylactic mastectomy on left side).  When I was first diagnosed, my tumor was over 1 cm and 3 lymph nodes were positive for cancer via biopsy and MRI.  Based on that information, my doctors - who worked very much as a team - decided that I should have radiation.  Now I question whether that was the right decision, because the chemo and targeted therapy (herceptin) were so effective for me that my tumor was completely gone from my breast and only one lymph node had a 2mm foci remaining.  The way that radiation treatment is decided, as it was explained to me, is according to the size of the tumor and if lymph nodes are involved.  My mastecomy surgeon told me that radiation is advised in these circumstances because one BC cell left behind could affect the skin, and if the skin were affected with BC, there is no cure.  Ask your doctor if this information is correct, but I'm fairly certain this is what I was told.  This is the only reason that I decided to go ahead with radiation - but my RO told me that her decision was based on the research as it applied to my tumor size at the time of diagnosis.  She told me that in 5 years, the research may be available for women with cases such as mine, but that as of now, there hasn't been enough research done to offer a better course for treatment.  

I haven't been through the reconstruction process yet, and I tolerated radiation very well - except for where the skin is now stuck to the fascia underneath.  That is aggravating, but a huge part of that area will be removed when I have DIEP flap in a few months.

Even though I had a BMX, I did do radiation. I got three opinions from RO's (after having my PS and MO tell me that I didn't need radiation, but, was entitled to an opinion from an RO). We were all surprised when all 3 recommended radiation. Even though I had a BMX (my choice), great margins, no nodal involvement, no LVI, the deciding factor was the size of my tumor (just over 4cm). All three said that the most likely place for a local recurrence was the incisional scar. I had that radiated and my chest wall (right side). According to the RO I chose, it brought down my local recurrence rate down from 15% over ten years to about 5%. I made it thru fine....just fatigued by the end. The facility and the people were great. I know a lot of post talk about dealing with a local recurrence in the future if they have to, and decline radiation, which is fine. Everyone needs to do what they're comfortable with. For me, when I see that, I always wonder..."how do you know that specific moment in time before a local recurrence is discovered that a local recurrence progresses into mets?" idk.. I know no one knows, but I'm relieved that I went thru with rads, and thrilled to reduce my local recurrence rate by as much as 10%.