Feel like quitting rads

percy4 · February 2014

I feel like quitting rads. One and one-half weeks in. I have a true feeling that my all my BC was gotten in surgery, and this is just an assault on my body. In real life, however, I have researched this, very much; consulted with an outside source (Dr. Lagios) and have been advised by all that rads, in my case, are appropriate. I still have an incredible feeling that I'm OK without them. I know, however, that I am wrong, and my emotional reaction to this is just that. I hate this, the thing that will help me, but harm me. Just need a few of you to tell me to go on with it. Stupid; I know, but, still. And, the boosts. I simply cannot decide about that. I almost wish they would have not left me with so much input. What if I forgo the boosts, and then get a recurrence? What if I take the boosts (a TINY bit of an advantage to the tumor bed, as my RO says) and I get unnecessary SEs from that? I have about a week to decide.

percy4 · February 2014

PLEASE advise me. What would you do?

Ariom · February 2014

This is a really tough one, Percy. No one can really suggest either way for you. We all have to decide what is right for us.

I had to make the choice about Rads or no Rads and my feelings were that I would handle a Mx better than the Rads. That was me, but I wouldn't suggest someone else should follow my lead.

I think, if it were me, I would have to go with the suggestion of the Doctors, particularly Dr Lagios, who I have read a lot about. It seems he doesn't recommend rads in every DCIS situation, so if he is recommending them, perhaps there is good reason to continue.

I guess you have to decide if you can live with the consequences if you do decide to stop and there are, well, consequences to deal with later.

I understand how conflicted you must be feeling, and I know I haven't been any help to you, but I hate to see posts going unanswered.

I am sure there will be someone along who has more information that may help you in this decision.

Take care!

percy4 · February 2014

Thank you, my Love. There is no where else but here that I can go to, to express my mixed feelings. I am so happy I have all of you, here. S**t; if I discontinue rads, I could die, and if I go on with them, I could have all kinds of SEs; not just appearence, but lungs, etc. Can't very well stop now, after lumpectomy. Still; the boosts are a big thing for me. 10 more gys. Can only be done once, but I feel, in my case, it's overkill. If I hear the word "standard" once more I shall scream. The thing is, with BC, NO decision is fine. Each one comes with benefits and downsides..

Ariom · February 2014

I truly understand your feelings. I "get" overkill, look at me, a Uni for DCIS, but all I could think of, was looking at what I would gain, not what I lost. I had the possibility of still needing rads after my Mx, if my Path uncovered any surprises. I was resigned to that if it actually happened. It was a crap shoot, like so much of this shit is! This time, I was lucky!

If it helps at all, I know there are many, many women who felt just as you do, who went ahead with the rads and had no problems at all. This is what you have to believe for yourself. It is absolutely possible that you will finish the rads and go on with your life with no adverse effects and you'll also know that you did everything possible to eradicate this disease forever.

I know it is hard,right now, but try to look to the future when this is all behind you!

Take care, and I wish you the very best!

BrooksideVT · February 2014

I was about where you are now. I brought the idea up with my RO who indicated that quitting rads in the middle is absolutely a no-no because neither has it done its job, nor can you then have it in the future. Do talk this out with your RO, and maybe the rest of your team. Also, it sounds as though you have not yet talked with your RO about potential long term side effects. I think if you do, you'll find they are protecting your heart and lungs amazingly well.

Moderators · February 2014

Hi Percy!

In addition to the helpful advices you've received here, there's a whole section on Radiation Therapy in the Breastcancer.org main site where you can learn more about radiation therapy, including how it works, when is it appropriate, types of radiation, research news, frequently asked questions about radiation treatment, etc.

Hope it helps!

The Mods

Annette47 · February 2014

Hang there - soon enough you'll be looking at this in the rear-view mirror. And as a previous person posted, if you quit now, you haven't received the full benefit, but you've already gotten some of the downsides, so what does quitting gain you?

As for the boosts, I wasn't given an option, but the only thing I noticed that was different about that was that my skin got a little red (hadn't at all over the previous 5 weeks).

pupmom · February 2014

For me, RADS were a piece of cake. Just got a little red and itchy toward the end. I'm almost two years out and have had NO SEs. Only thing irritating about RADS was having to be there every day. Didn't notice any difference between boosts and the other treatments either. Personally, I can't imagine why you would forgo a potentially life-saving, and relatively very easy, treatment due to fear. But I wish you the best whatever route you take.

encyclias · February 2014

It is my understanding that the boosts are the least damaging since they are shallow beam (I think electrons only) which is focused only on the area of your breast where the lumpectomy was. They do not go through your lungs or the rest of your upper body like regular rads do.

We each have to make our own decisions. I went with the 28 rads, 5 boosts back in June and so far have no side effects.

Wishing you the best whichever way you decide.

Carol

ballet12 · February 2014

Hi Percy, not to scare you, but I just saw a post the other day from someone with a recurrence (who previously had DCIS), who opted not to have rads in that first go around. Her recurrence was stage 1 with ER, PR neg and Her2 pos. Not a great situation. Rads are really important to stave off recurrence. Your body was already telling you something with the microinvasion. The odds are very high that you will have minimal side effects. Not to say you won't have any.

You can do this.

There is a part of me that always feels like I did overtreatment, until I read posts like the above. I had a pretty high recurrence risk without rads. I'm down to (estimated) 12 percent recurrence at this point.

annika12 · February 2014

I talked to two sweet brave ladies a few months ago while in the infusion chair . They both had cancer that returned....one trued it all and the other did not. The one who tried it all felt it is what it is. The other Lady had a lot of what IFs in her head. Me I want to be able to look my kids in the eyes and sat I did all I could, I trued it all if that would happen to me . On the other hand I also believe we have to live with this and nobody else but us should make important decisions !! Hang tight .....

Jennt28 · February 2014

I quit.... It felt "wrong" to me. I then went and had a MX as you can see in my signature.

My MO assured me that if bc came back I could then have rads since I only had 12.

Jenn

redsox · February 2014

Two approaches to trying to prevent recurrence that pull patients and doctors in opposite directions are: 1) surgical emphasis --- cut out as much as possible to try to remove all cancer and 2) systemic /regional emphasis -- cut out the definable tumor and then use radiation, chemo, and/or hormonal therapy to get cancer cells that have wandered off from the original site. For most stages of breast cancer the systemic approach is gaining more evidence to support it and more methods to refine it. For very small IDC or DCIS the surgical emphasis is often a feasible option but many of us have indications that wandering cells may be present making the systemic approach better. Recommendations from different doctors may vary because the doctors may be biased to varying degrees toward one approach or the other. Dr. Lagios is clearly in favor of the surgical emphasis, which means if you consult him and he recommends radiation you are not likely to find other qualified doctors who would say the opposite.

Stopping radiation to the breast after a lumpectomy and then having a mastectomy is a different situation from stopping in the middle of radiation and having no further surgery. If you had only breast fields treated the area that received some radiation is no longer there after a mastectomy removes the breast. If you need radiation after a future recurrence the area to receive the radiation (e.g. chest wall, nodes) is not the same area that received the original incomplete course of radiation.

Mayanne · February 2014

Hi Percy,

I totally understand your feelings! I feel the same way daily, and I think it's totally normal. We have lived our lives trying to take care of our bodies the best way we can - questioning the need of extra dental x-rays, asking techs about the safety of radiation from mammograms, and here we are submitting to THIS much radiation daily for weeks. How could we NOT question?

My RO knew I had many misgivings from the day of the planning session. I was very concerned about my heart, because I have PVC's, which have been diagnosed as benign, but very noticeable and irritating. He answered all of my questions and invited my husband and me to come in to see "the plan" with the blocks around the heart - apparent on the computer.

So, although I think about it daily and have fantasies of just quitting, I also feel intellectually committed. I always think of Mr. Spock from Start Trek, who approached problems from intellectual, rather than emotional perspective. In the case of the radiation, I think that based on my grade and hormone status and the statistics, it is the approach that I feel is best - no matter how my emotions are trying to get me out of it.

I also think of my mother who had BC and radiation in 1978 - 36 years ago - when machinery, computers and Dosimetry planning were not what they are today. She did fine and lived for all those extra decades. I just had my 9th treatment out of 33 - no one has mentioned calling some of them boosts, so I'm not sure about that.

janemarie · February 2014

If you live near a large city, other protocols may be available. There is prone position where you lay forward and the radiation is focused on the affected breast only. It is possible the number of treatments may be fewer as well.

Jelson · February 2014

Percy4 - stick with it.

edwards750 · February 2014

My sister in law was DCIS and had the mammocite radiation treatments. Twice a day for a week. She said it was a piece of cake. I am Stage 2, Grade 1 and I had 33 RADS treatments. I had zero issues with the radiation. Definitely a bummer to have to go every day but I scheduled mine when the door opened; wasn't there longer than 30 minutes or so and other than a bit of burning and fatigue halfway through the treatments it was no big deal...for me. To be honest I never thought about not doing it. The Oncotype test rescued me from having to have chemo so I was more than willing to go to Plan B and have the treatments. No one can make the call for you that's for sure and if God forbid mine comes back I wont be able to have radiation again but I guess I will cross that bridge when I come to it. The only sage advice I can give is whatever you decide don't second guess yourself and don't look back..diane

ruthbru · February 2014

This is not a time to go with your feelings, but with the cold, hard scientific facts which say that radiation will reduce your chances of ever having to deal with this again. Radiation is much more targeted than it used to be & serious SEs are very rare. Be glad that it is a tool we have in our arsenal! (Did rads & the boosts with no problems then or now, 6 1/2 years later.)

percy4 · February 2014

Thanks, all, for your support. Yesterday wasn't a good day. No; I won't really be quitting rads, though I felt like it. The boosts are another question. Asked RO about them yet again today, and he is just not that invested in my having them. I said "But it could be a life-or-death decision", and he said "It is not a life-or-death decision in your case at all". I said that OK, maybe not critcal for health, but if a small bigger chance of local recurrence, could mean a mastectomy down the road. He said THAT could be true, but still doesn't think my own recurrence chance is high in any case; in fact it's low. He also said there are indeed cases where he STONGLY recommends the boosts, but not mine. He's offering them because they are fairly standard, but says he really does feel the regular radiation will address all needed for me, boosts would be just a tiny added benefit, and then just maybe. Maybe that's because I'm small, not much tissue there to address (will have to ask that question). I told him (with a grin) that of course what he was saying was not helping me one bit to decide. He smiled back and said "It's up to you. I think you'll be fine either way". And, yes, he is really an excellent doc. Great reputation, and the clearest statistical info I've gotten from anyone. Oh, well; I'll figure it out. But don't worry, I'm definitely completing the regular protocol, at least. xx

wyo · February 2014

Hi Percy

Glad you made it through the angst (for now). I will say this about Rads- its a total head game and I know from reading your posts that is the worst kind of thing for you as you research and think things through so deeply.

I was glad so many people posted about the mental versus physical side of radiation treatment so when I started getting "antsy" I knew it was normal to what a lot of others had experienced.

I did have one mini-meltdown day where I just thought I did not need any of that laying there with arms over head listening to the machine whine- then I read a few of the Stage IV threads and the young women with BC threads with small kids and just got over myself and thought how lucky I was to have something like this to bi#$h about.

Hang in there

faerywings · February 2014

Thanks for posting this. I haven't have my spectrometry (this was supposed to say lumpectomey but God only knows what I typed LOL!!!) yet- that is on March 3. But I am already having doubts about the rads. My BS said it is def. recommended. My hubby is very pro-active for alternative tx's. I have been reading up on the mammogram study and how DCIS is "not really cancer" and is over dx'd and over tx'd.I have been getting ahead of myself, flipping back and forth and I don't even have BRCA and surgical path results in. LOL!!!!

I appreciate you sharing your indecision and concerns. I feel a lot more "normal" now. Much luck to you!! Hugs!

percy4 · February 2014

Hi faerywings - It really is good to be able to talk about concerns and mixed feelings, here. And it is totally normal. At least I'm pretty sure I'm normal in this way. Yes; there is some concern out there about possible over-treatment for pure DCIS (I had DCISMI, which is DCIS with a microinvasion). And, as you can see, no one understands better than I those unhappy feelings about having to undergo a treatment which is heavy-duty on the body. I would be remiss, however, if I did not point out to you that, while radiation is serious treatment, and maybe in 50 years we'll look back and be amazed that such an invasive thing was needed, we are now, and NOT 50 years from now, and right now rads is what we have for cutting recurrence chance in half. And, yes, that is with pure DCIS, which can recur half the time as DCIS and half the time as invasive cancer. And, believe me, as wyo said, all you have to do is sit in the MO's office among women younger than you, with the no hair and who appear quite ill and all, to know you don't want that. There may be situations where it is not foolish to forgo rads with low-grade, non-necrotic DCIS with WIDE margins all around, but you should really investigate thoroughly before considering this. I consulted Dr. Michael Lagios, which can be done from anywhere by phone (you can Google him), an expert pathologist and advisor about DCIS. He does disagree about the advice to ALWAYS have rads after lumpectomy, depending on the situation, but in my case, because of narrow margins and microinvasion, even he recommended radiation. Yes; I hate having rads, and am totally with you in spirit about it, but I will be lying on that table later this morning. Best - P. xx

Bren-2007 · February 2014

Percy,

I understand how you feel. I hated rads ... everything about it made me want to scream and run the other direction. I had 28 regular and about 6 boosts. All I can remember of it now is that it lasted about 8 weeks all total and my skin was really burned.

Today, 6 1/2 years later, you can't tell I ever had radiation. My breasts look exactly the same. The only difference is my treated breast still really hurts when palpated. That could be a side effect from the lumpectomy or the radiation. Guess I'll never know.

Lying on that narrow hard metal table was horrible. That huge machine looming over you, and the then techs scurrying to get out and shut that huge door before the machine came, on used to terrify me. I was still having pain from my lumpectomy when I started radiation ... I needed help just to get my arm down from up above my head.

Truly though .. all these years later I look and feel just fine. And I know you will too. Just have to get through one treatment at a time.

hugs,

Bren

LizzieK · February 2014

I had double the breast radiation dose of radiation to my throat and neck in 2011 for Stage IV laryngeal cancer so when I got diagnosed with Stage I breast cancer I really researched breast radiation because the last thing I wanted was more radiation to my body. The adiation and chemo did cure my throat cancer. The research I did showed that in older women (65 plus) with early stage breast cancer the radiation wasn't worth it (I am 62). I discussed it with my RO and he said for very old and sick woman with early stage he doesn't recommend the radiation. He offered me a short term partial breast protocol that would limit the area that got the radiation, especially my heart. I am in the middle of that treatment now and it's not bad, much easier than the throat radiation. (see the One Week Rads posting), It's a difficult decision but the research shows radiation does significantly reduce the local recurrence rate and hormone therapy handles the distance recurrences. Like all of us we hope for the day when 'cut, burn and poison' is no longer the best way to treat cancer. That day is coming.

faerywings · February 2014

Percy-- thank you for you advice!

Interesting side note: I was at my kids' lyme disease dr (my whole family is infected yippeee!!) and the nurse there was asking how I was doing. She also had cancer (not breast but some intestinal type IIRC), surgery/chemo. So I asked her if she had any experience with Lyme and rads. She said one of the patients in her practice actually had her lyme symptoms *improve* while on rads. So, it will be intersting to see.

Mayanne · February 2014

Faerywings, So sorry about your whole family having Lyme. Will everyone always have the symptoms? I'm hoping that the radiation cures yours!

Percy, I've been wondering if you decided to go ahead with the boosts. I was just told today (my 11th appointment out of 33) that I will have boosts and there is an appointment set up for the sim on that. No one had mentioned it - maybe they don't want to tell you too much too soon? The tech was surprised I had heard of boosts and said that most women say "WHAT????" and become very concerned. I've researched it and wonder if it's really necessary for me - I am 65 and had clear margins. Possibly because of the grade (3) of the DCIS? I'd appreciate anyone's advice.

Lizzy, I was just wondering if they give boosts when someone is in the 9 day or 15 day regimen?

ruthbru · February 2014

Boosts shouldn't cause you any problems. They aren't as penetrating as the other beams & just target the area where the tumor was as an extra precaution.

ziggypop · February 2014

Have posted this in many places, but it seemed apropos here:

ruthbru · February 2014

That is great. I wish I dared pass it out at tattoo parlors!

Annette47 · February 2014

OMG - I really LOVE this!

Feel like quitting rads

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