Wanting to chicken out of radiation...

lotstolivefor

I'm supposed to start radiation next Thursday, but after all the googling I've been doing about long-term side effects, I'm thinking I don't want it!  I'm not so worried about burning, soreness, etc.  It's the possibility of permanent lung damage, heart damage, rib fracture that has me   I just turned 36 and worry that I'll have permanent issues for the next 30 years if I do this.  I'm not even sure what I want anyone to say....I guess I just needed to vent my fear.  Can I get away with refusing it? Is it possible to go through it without such terrible consequences?  Thank you for listening

cary1

What other kind of treatment have you had? I had a lumpectomy and the mantra I heard was that a lumpectomy plus radiation = mastectomy in terms of effectiveness. I also ended up having to have chemo before the rads, but just thinking if that (sigh) hadn't occurred, I don't think I would have been confident going with just surgery and no radiation even after clear margins. It took a reexcision to achieve that. I think I would have been way too scared to just have the lumpectomy and leave it at that.

I am not trying to discount your concerns. Can you talk to the radiation oncologist? Also, is your treatment on the left side with your heart?

 I just noticed another recent thread, "If all margins clear, why radiation?" where people are spelling the reasons for rads much better than I did. Hope you see it. 

Lindissima

Dear Lotstolivefor,

Sorry to hear you are having a hard time.  Fear is a natural reaction, but getting good information both here and frim your doctors can ease your mind.

I noticed that your diagnosis stated Stage one, but your tumor size is over 2 cm.  That would be stage 2.  In that case, radiation is certainly warranted.  There are web sites posted earlier that deal with recurrence rates based on size of margins. You need to discuss your concerns with your rad onc and medical oncologist for the best explanation of risks and benefits.

I had 25 rounds of radiation on the right side, and had no significant problems with it, other than a bit of skin burning and tiredness around the three week point.  Many women sail through rads.  Are you in a support group?  There you would meet other women going through rads who could give you some idea what to expect, though everyone is different in how they react.

I found rads comforting in that they reduced my risk or recurrence by 50% and gave me more piece of mind.  Good luck !

lotstolivefor

Cary--thank you for your reply.  I'll check out that other thread like you suggested.  For more information--I've had a lumpectomy and now on tamox. Margins clear.  My breast cancer is on my right breast, so perhaps my heart is not in danger?  I didn't have chemo because my oncotype dx came back score of 12. 

I'm worried about pulmonary side effects.  It really has me wanting to jump ship before I even get on!

Anonymous

    I only had radiation once so far and it was on the mets to my sacrum and I only had to go for three weeks.   I did not have any problems with it at all other than the fact the tape they used to keep the marks from washing off caused my skin to break out so then they used something else.  But every one is different and I am sure the area being radiated makes a difference plus the length of time and the duration of the treatments.  Fear of the unknown is the worst.....ask your doctor or one of the rad techs to go over it with you.  Also, you will get lots of good info from these boards. 

Morgan513

I did radiation back in 2008.  I think we all have concerns about long-term side effects.  I was radiated on my right side.  The rad onc said that they really try to focus the beam away from the major organs and try to avoid the heart.  I have to say that I had very mild side effects.  I had no problems with my ribs and only minor skin problems.  I must say that I was religious with using the lotion they gave me and also by using corn starch and a bralette during treatment.  My skin has healed perfectly.  You would never know it was radiated.  

I think when it comes down to it, you have weigh the risk vs. the reward.  

Lorrie 

wallycat

For every person who you hear about with horror stories you will also hear about great outcomes.

You have to know yourself and what kind of worrier you are.

For me, I had the concerns you did so I opted for mastectomy to avoid radiation.

apple

well put Lorrie.

i have not suffered. 

Faith316

Radiation is not like it used to be.  It is delivered more precisely to the area in need rather than hitting everything in sight.  I had left breast/axila radiation and had no problems.  I talked with my radiation oncologist about some of the things you mentioned -- specifically about the heart since it was left side.  I would suggest making an appointment with your radiation oncologist before your treatment starts or at least making a phone call to him and taking a list of all your concerns for him to address.  I think it will make you feel better.  Good luck to you.

Titan

Oh lotstolive for...look at your "screen name"....since you have lots to live for do what you can so you are there for them....Yes..you may have some SE"S...and then again there is a good chance you may not...talk to your Onc..please!....Don't give up rads..they can be a lifesaver....I don't know..it is so hard....I think that I would rather live with some se's than...well..not live....I had absolutely no issues with rads..a little skin soreness but it lasted for maybe 3 days..that was it....since you are young and your skin is young you really shouldn't have any problems..my mom had rads at 70..not for breast cancer but it was rads from her neck to her abdomen..I will tell you that she had a rough time but she is now 75 and has no se's at all..it was just during her rads..and her skin was alot older than yours.

Take a deep breath..find out all the information you can...and go with your heart...the problem is..is that we only hear the horror stories..yes..they do happen..but most people get through it just fine.

vivre

I was totally freaked out all through rads. I was stage one, with clear margins and no nodes, and I just laid there everyday, feeling they were killing me instead of helping me. I just had a strong believe that I could build up my own immune system to catch any possible strays rather get fried. To this day, I have not stopped regretting rads, even though I had little side effects while I was going through it. I think the fact that I literally ran out of there every day, ate an apple and took a long walk to get over the emotional aspects of it, probably kept me from getting any side effects. But I think they totally zapped my thyroid, and that is why I am still upset. I can no longer sweat.  I used to sweat like crazy and now, I cannot even perspire a little, though I exercise everyday. We need to sweat in order to get rid of toxins, and it just makes me so upset that I cannot get the junk out with a good sweat, though I am taking iodine and NAC which does have a detoxing effect. I guess the only good thing I can say about rads is that it got into the habit of loving my daily walks, and I no longer have to buy deordorant. I know this is not a popular opinion around here, but I thought you might like to hear another side of it.

Wonderland

I was in the gray area for needing radiation. After having a mastectomy and 8 rounds of chemo, I really didn't want it and made my opinion made loud and clear. Finally my sister set my head straight. She said, "If it were me I'd want them to give me everything they had." That's all I needed to hear. 33 rads later I was red and tired BUT grateful I let them give me everything they had.

Don't give into your fear. Learn everything you can about radiation. Knowledge is truly power.

ruthbru

Do the radiation; you never want to the breast cancer thing again, and need to do everything possible so that you won't have to!!!!!

retrievermom

I meet with my rad onc this week and expect to begin treatment soon.  Came home after work today and read a column in the Sun NY Times about radiation that freaked me out.  People getting wrong doses, machines being set wrong, etc.  I'm already worried about becoming tired and skin reactions, and now this, too.  Clean margins from the lumpectomy, clean nodes; everyone seems to think rads is naturally next, with chemo still a possibility.  If chemo, does it come first?

ruthbru

Yes, if you need chemo, it will come first .

retrievermom

My surgeon didn't seem to think I needed chemo, but wanted me to talk to the oncologist, "the expert," in her words.  All along, I've been thinking that I'm waiting to start radiation.  Adding the possibiiity of chemo, but seeing the radiation onc first confuses me.  A friend said the issue of chemo was raised because I'm estrogen negative.  My surgeon said it was raised because the cancer had moved beyond the duct.

Sparrow

I did my last radiation treatment the Wednesday before Xmas.  I had 25 zaps.  I was terrified at first but after a couple of weeks it gradually became a routine thing.  

If you don't like the machine (I didn't) I found that a sleep mask and earplugs helped.  I got both at the drugstore and wore them every day. 

I'm really fair skinned but I didn't burn or blister.  I did get a bad 'sunburn' on my side and under my breast by the end.  My rads tan is fading fast.  I think in another month or so it'll be gone.  My breast looks and feels just like the other one,  just a tiny bit darker.

I do still have a sore spot on my side.  I'm not sure if it's a rib or not.  I'll see my rad onc for a follow-up appt. Monday.

Fatigue started about week 3.  It felt like I was on cold medecine, just kind of tired and goofy. I took naps when I needed them and went to bed early.  It really hit me after rads was over and I spent a lot of time on the couch.  Then about 11 days after treatment ended I woke up one morning and my energy was back.  

Rads can be scary and inconvenient and tiring but I'm glad now that I did it.  There may be some microscopic cancer cells left after surgery and I wanted to do everything I could to kill the nasty little things.  I'm on Tamoxifen now because I'm ER+ but you are ER- and don't have that option. If I was in your shoes I'd do the rads, as much as I hated it.  

Hugs!!!  -Tamara 

NatsFan

lots - I'm one of those who declined rads because, like Wonderland, I was in a grey area.  But I had a BMX with very wide margins, not a lumpectomy.  I also had chemo. So my case is pretty different than yours, and my rad onc was comfortable with my decision to decline rads.

But since you've had a lumpectomy, from what I understand, rads are pretty standard since there's more of a chance that some bad cells got left behind and might be floating around in there.  Maybe getting a second opinion from another rad onc might help you internalize why rads are being recommended in your case, and help you to take the next step forward in treatment - sometimes someone else can explain something in such a way that it just clicks.  I found that the more I knew about my treatment and understood why certain recommendations were made for me, the easier it was to take the treatment steps I needed.  Knowledge is power. 

ruthbru

What is your stage, grade and hormone status? I thought I would go straight to radiation and was beyond SHOCKED when the oncologist suggested chemo. I didn't want to do it, but when I looked at the BIG reduction in recurrence for my stage and grade; I really didn't have any choice but to do it. Find out all the information you can. If your oncologist does suggest chemo have him/her go on this website and punch in all your information; www.adjuvantsite.com It's a site for doctors, but can tell your what your risk for recurrence is with and without various treatments. Gosh, by the time you get to it, you will be glad if you 'just' have to do radiation. It's tough stuff mentally, that's for sure. Good Luck! Ruth

leighannmarie

I felt the same way.  I told my doc that when I went for the markings.  He said a lot of people feel that way.  The night before my treatment began I cried my self to sleep.  I am halfway done now and am getting a bit sore and red but I am not as scared anymore.

lotstolivefor

Okay,

I wanted to update you all since you've been so very nice to help me!  I decided to go ahead with it and have now had a whopping two treatments!  So far so good...hee hee.  I feel very nervous lying there on the table, and I did have a bit of a cry right there the first time.  My techs are male, which I don't love, but they are very nice.  I do see how they take great pains to make sure I'm lined up correctly, and they answer all of my questions (and I have lots!) thoroughly.  

So 2 down, 31 to go! I think I'll make it..........

vivre

Good luck to you lots. I cried the beginning of every week, would kind of get use it it by the end of each week, and then melt down (no pun intended) again every monday. The whole thing still makes me upset that I did it, but oh well. When you are finished, start taking some NAC. It detoxes the radiation. It takes forever to get rid of the stuff.

ruthbru

You WILL make it. I would shut my eyes and pretend I was lying on a dock at the lake, thinking about what fun things I'd do that day; like swim, have a bonfire, take the boat out etc. When the machine came overhead, I would pretend it was a cloud blocking the sun for a minute. It might sound silly, but it helped me get through it. Hang in there! Ruth

lotstolivefor

Vivre--can you elaborate what NAC is, and what it does?  And are you saying radiation stays in the body somehow? Guess I thought you got zapped, and once the machine was off, the radiation disappeared!  Shows how much I know....................

vivre

The effects of radiation are cumulative. I had rads two years ago and I could still see a hot area in my radiated breast on my thermagraph last week! It has cooled each time I checked it, but the effects are still there. I have been trying so hard to get this out of me, because it just freaks me out.  Add up all the radiation we get from xrays, scans, mammograph(which I will never have again) and flying in airplanes, and we end up with a lot of this stuff in our bodies. NAC is a supplement that my holistic dentist recommended that helps to chelate out the effects of toxic metals and radiation that builds up in our bodies. I know it works because I only did it for a couple of days and I am detoxing so much it freaks me out. I keep starting and stopping. For instance, the first time, my face broke out, and the next time my jaw hurt, which gives me the idea that my dentist is right and I need to get the fillings removed from my teeth and my root canal taken out. I know I sound obsessed, maybe I am, but I want to get my body as healthy as I possible can. I have come a long way in all the other areas, but this radiation detox has been the one that has been the hardest. I am still working on it, over 2 years after I finished. I am just hoping that maybe you all, will get a jump on it sooner. Find a doctor in your area, who practices holistic health and will help you detox. It can be dangerous if not done properly, so it is important to have a doctor's support. Now finding a good doctor, is another story. It took me months of searching. Good luck.

Oh, and while you are going through rads, use pure, organic coconut oil on your skin. It does not have any dangerous chemicals like all that other stuff does. Also, exercise everyday. I kept walking each day, and I never got the fatigue. I actually had very few physical side effects. Most of them were emotional. I just hated the whole procedure. Luckily I had a wonderful rad onc, She was the only thing that got me through it.

ruthbru

Everyone feels differently, and everyone's experience and feelings are valid; but I have to say that I was very grateful for radiation because it lowered my chances of ever having to go through a cancer diagnosis again. It was not fun or easy, but surely not the worst part of my treatments either.  And when it was done, I was fine; and you will be too!

lotstolivefor

ruthbru,

Thank you for that post--it gives me encouragement and comfort for sure.  These next six weeks won't be fun, but it sure beats the alternative, right?  (Cancer growing back).  

ruthbru

ABSOLUTELY!!!!!

carolyn64

I start this coming Monday; or I go for my planning session.  I am scared also.  I agree with you what does one do.

kmf

I want to add to the exercise advice -- I started back on my treadmill when I started rads -- I figured I had 3-4 wks to get my stamina up before the fatigue set in.   I hadn't exercised in several months, so I was a bit out of shape.  I am glad to say that I have regained my stamina and have felt stronger every week w/the exercise.  I have had NO fatigue ( knock on wood) and I just have 6 more to go.   I totally attribute this to the exercise.  Fatigue may hit later, but I'm convinced that if and when I get it it will be minimal thanks to the exercising.   Unfortunately my skin hasn't been as much of a success story, but that is mainly because I had a bolus everyday until this past Mon. and I got pretty fried.  The prescription cream helps a lot though.  It's all very doable and better than going through cancer again!  Karenanne

ruthbru

I totally agree with the exercise advice!! I kept exercising (lightly) throughout, and was able to keep up a normal schedule, and was not at all fatigued (just tired of going to the appointments; I live 100 miles away from my radiation center, so 6 weeks of traveling 200 miles a day was a DRAG!), but I think keeping moving had a great deal to do with how well I came through it.