Questions about radiation in early stage IDC

mollyann

Bridetobe,

If you scroll back in this thread you might find it comes down to asking yourself, "do I want to do a procedure that may have small local recurrence value but has no overall survival value."  Reading between the lines, your onc seems to be of that mind. You will come to a decision you can live with, I'm sure. You seem to be asking all the right questions and looking for the answers in the right numbers. 

LtotheK

Mollyann mentions what all of us should be asking, about the overall survival.  My doctor says the studies are showing better overall survival in radiation techniques today.  But the overall survival is an often overlooked part of the picture we think is being answered fairly by doctors who toss stats of relative vs. absolute risk around.  Your doctor sounds incredibly responsible in this department, much moreso than mine.

asschercut

I wish they had some sort of lead shielding to protect us during radiotherapy. I developed nose bleeds after a month into it....and they lasted about 6 months. At first I started developing them daily, first thing every the morning...and it faded out to about once a week towards the end. I only had to sneeze and my nose would bleed...from excessive dryness. I put so many wonderful products up there to keep it moist...and it still took months to subside. During rads when the buzzer went off I held my breath for 20 seconds three times each day...hoping that I may somehow prevent the dryness in my throat and nose. I finished therapy last Christmas. My onc told me that my armpit would not be radiated....as my nodes were clear. He said that if anything I would get some minor scattering there, on the surface of my heart...and that a small part of my left lung would be singed. GREAT!!!

Well I work up quite a sweat in my daily workouts....but I don't sweat half as much under my radiated armpit....and I still don't have a single strand of hair under there.

I think that we are all getting far more scattering than we realize. And I wish our oncologists would fess up as to how much radiation our healthy organs are actually being exposed to.

Victoria

Omaz

Good point.  I remember dental xrays where you had to wear an apron and throat shield just to xray your molars.

LtotheK

I still wear an apron and throat shield at my dentist!  Some of this is scatter, some of this could be other effects.  The reason under my breast is raw is not scatter, per se, it's how the beam hits an arc.  I find it terrifying that scatter would go as far as your nose, have you talked to them about this?  That is quite a distance, and when I asked about a thyroid guard, they said it was not necessary given the direction of the beam.  Hard for me to imagine in the days of lawsuits they would say something entirely untrue.

bridetobe

Wow! Hearing all your comments, I'm starting to think that there are a lot of other side effects that may not be discussed or may be brushed aside. We worry so much about chemotherapy's effects and get told rads is so much easier.  I wonder if its because we only see the effects of radiation in the long-term.

LtotheK

I will absolutely put my vote in that rads are 1,000x easier than chemo.  Chemo is awful.  Anything strong enough to fight cancer is going to adversely affect something else in the body.  I believe that to be true for any naturopathic intervention strong enough to kill cancer, too!  This is all serious medicine. I wish it were simpler, someday, it might be.  I have serious misgivings about allopathic treatments, I only plead with you, Bride, to take your advice from other young women, too.  It's one thing to walk away at 55, another under 40. 

Sounds like you are getting good direction, your onc gives you real numbers, or at least helps you understand how to translate them that way.  I had to come here to figure all that stuff out.

My father and I read about 25 studies out of medical journals about radiation.  We did the legwork, I think all patients should try to do same.

thenewme

Hi BrideToBe (Congrats! When's the wedding?)

If you haven't already, check out this section of BreastCancer.org - it has a lot of helpful information about radiation therapy and may help answer some of your questions/concerns.

http://www.breastcancer.org/treatment/radiation/ 

Maybe part of the reason it seems that some of the rads side effects seem to be brushed aside is that they aren't all that prevalent.  Of course it's important to understand the risks involved, but they must be kept in perspective.

Think of a simple analogy like aspirin, for example.   Aspirin can have a lot of benefits, and we always hear about those, but we don't hear a lot of  people discussing strokes, Reye's syndrome, or hemmorhage that are known risks of aspirin. Same thing with radiation therapy.  There are, indeed, risks involved.  How do they compare with the potential benefits in your specific situation?  

bridetobe

Thank you everyone for the advice. MHP70 I think I will follow your advice and ask some fellow 30 year-olds. I also wanted to apologize if I implied that chemo is somewhat easier than rads. I did chemo for 5 months and although it was nowhere near as bad as I expected it to be, I imagine rads will be much easier. In fact, I have no qualms about the actual procedure. My biggest problems are the quality of life issues. Yes I'm young and (thankfully) still very active; I travel a great deal, scuba-dive, hike and love the sun. I wouldn't want any potential effects to limit that. If BC has taught me anything, its to live life to the max every day of your life. That's actually why my fiance and I decided to get married next June. Maybe this is going to sound really vain, but I would really like to be able to walk down the aisle and go on my honeymoon, knowing I am done with reconstruction and not have to worry about more surgeries (whether the implants fail or not during rads, recon is delayed for at least 6 months to a year). I know the flip side is, that I want to be alive to enjoy life, which is why I'm trying to weigh all these possibilities very carefully.

This stupid disease really does feel like a game of roulette!

thenewme

BrideToBe,

It's not vain at all - it's so understandable, and again, I just hate that you're facing this kind of decision.  It sucks no matter what, but for someone as young as you and planning your wedding, it just seems more unfair.  

I can only share my experience.  I was 39 at dx, so considered "young" by BC standards, ha!  I did rads with my expanders in place.  I was pretty worried about immediate problems with rads, since I'm VERY fair skinned and have reddish-hair and burn very easily.  It turned out that I did have some burns, but in all it wasn't that bad.  It was cumulative, so it was actually worst at the end and even after finishing.  Even then, it wasn't nearly as bad as I was expecting, although I know that some people have a harder time than I did.  

As for the expanders, I've had mine in for almost 2 years now, and I finished rads about a year and a half ago.  I don't notice much (any?) effect from the rads, on my skin, or any other effects other than some minor shortness of breath that may or may not be from some minimal lung damage from the location of my rad field.  I'm having my exchange surgery soon, and I'm glad I waited as long as I did.  My PS wanted to wait a year out from finishing rads, just in case there was any capsular contraction or tissue changes, but as far as I know there aren't any.  I'm glad I waited though, since I'd hate to rush the exchange and then have problems or bad results.  Honestly, the 40-50% failure rate you were told seems really high to me.  

I think a June wedding sounds fabulous.  Again, congrats!!!  By then, if you do decide on radiation, even if you still have expanders in place, you'll be so busy with wedding excitement and honeymoon plans that your expanders will be the last thing on your (or your hubby's) mind.  You'll have so much else to enjoy and focus on and feel great about! 

bridetobe

Thenewme, 39 is young and actually it that helps a lot to know that your TEs made it unscathed. Tell me, what size were/are the implants? I originally wanted to go bigger. I was a large B starting all this, wanted to go to a full C, but I've been told I'd get best results if I stayed a B. At this point, I'd be okay with it if it meant a better outcome. I also see that you had lymph nodes removed. Have you had any signs of arm swelling since the rads?

I'm meeting with my PS on Thursday and a lymphedema therapist Friday. Hopefully after both these meetings I will come to a more enlightened decision.

But I am encouraged by your experience! Thank you!

thenewme

Hi again,

My PS was adamant that my I finish all expansion before I started radiation, since radiation tissue changes can affect the elasticity of the skin.  I was very small breasted pre-BC, and my expanders are filled to 600cc, which is definitely more breast than I've ever had, but not nearly as large as it sounds, LOL!  I'm honestly not sure what size bra I'd wear now, since I don't wear one, but I think I'm pretty average-sized now, judging how many more off-the-rack clothes I fit.  I'm happy to be larger than I was before, since I didn't like the way a lot of clothes would sag and hang on me when I was smaller, and now I look forward to wearing "regular" clothes!  

My PS said the size was totally up to  me, and that if I wanted to go porn-size (!) that I could - she compared it to stretching our abdomen skin when we are pregnant.  I didn't want to go from one extreme to another,  but just average is good for me!  

That being said, I wonder why your surgeon says you'd have better results if you stayed the same size?  Maybe there's some specific - are you having trouble with the fills or anything? Do you have any skin breakdown over your expanders?   Before my surgery, my PS told me she could do immediate implants if I wanted to stay the same size - even though they would be removing a significant section of skin.  I'd definitely clarify with your surgeon why he doesn't recommend expansion for you - it seems that they would have just used implants rather than expanders if that was the case...?  I'm sure there's a good reason, but it'll ease your mind to know what it was!  Anyway, B is a nice size - big enough to wear curvy clothes but not big enough to cause problems with back pain, etc.

Funny you ask about lymphedema/swelling.  I hadn't had any issues at all with that after my surgery UNTIL THIS WEEK!  It's very minor and I haven't been to the doctor yet, so I'm not sure whether it's lymphedema or not, but I do have just a tad bit of swelling.   It's definitely  good that you're being so proactive, and hopefully the LE therapist can give you some helpful advice!  

Best of luck and do let us know what you find out!  Feel free to PM or post here - there's a ton of great info and support around here!

asschercut

MHP70: I was told that the scattering was going under my arm, on the surface of my heart and part of my lung. He did not say that it was direct scattering from the external beams. But as soon as the beams came on I would cough....and then eventually the nose bleeds started. There must be scattering in the room when the beams are on....surely? Why else would they run out so fast when they press the buzzer? I think this is something important that needs to be addressed?  

Other than that...I was totally cool with treatment....no fatigue whatsoever...no burning of the skin...and my scar has healed beautifully.

But!!!!!

I one late afternoon my oncologist had already gone for the day....and I wanted to see him about skipping the boost, and signing me off. I ended up seeing another oncologist...and I had a few concerns about the boost creating a fibrous bed...on my cancer bed. I wanted to know if it could cause cells to mutate again in the future.

Well...she was obviously wanting to go home, and was terribly agitated. I asked her could she please answer a few questions......and this was her answer to me....

"Don't you already have enough problems in your life right now...why do you have to know things that may put stress in your life?"

I was gobsmacked!!

I replied "Actually I don't have enough problems in my life.....I have a full and satisfying life"

I stood up to leave...when she grabbed my hand (in fear) and said that she would answer any questions I had to ask. She said that she did not know if the boost would create a fibrous bed...and cause cells to mutate, and perhaps give me ADH in the future....which after some research was my concern.

She did however say that her/their main areas of concern after radiotherapy were tumours developing in areas that were exposed to ionised radiation. Her exact words were ...

"In particular areas for concern in the future would be part of your lung for example or other areas of your breast that were exposed to radiation...that whole area" and she put her hand around my breast and armpit that were exposed, to show the areas she was referring to . I told her I was thankful to her for pointing out the facts.

The next day....

I spoke with my onc and told him what she had said....and asked him why he did not point these factors out before. He said she had no right telling me that...and she did not know what she was talking about. (he's the head honcho there) I never saw her again. I asked what had happened to #$%$#...and he said she was sent to another hospital. I had a funny feeling she said something she wasn't supposed to say...and was dismissed. Hmmm, curious? It was all a bit strange?

Victoria

LtotheK

"Don't you already have enough problems in your life right now...why do you have to know things that may put stress in your life?"

This person should lose their license, seriously.  As for the scatter radiation, mine tells me I did a lot more damage to myself with chemo than I will with radiation (1% on average chance to precipitate other tumors).  I think I've finally realized that a believable answer is not possible.  It's about creating a certain comfort level to get on with life.  But, this all feeds perfectly into what a lot of the naturopathic folks here say about true overall survival stats.  Cancer-free and alive at the 10 year mark are sadly different things.  Secondary cancers happen what seems to me with some frequency.  When I put my oncologist on the spot about whether my body is made to produce breast cancer, and whether I'll be seeing another regardless of the current "cure" for this monster, she was floored and really had no answer.

Yeah, docs, some of us are smart enough to put 2 and 2 together.

As for the running out, I know, it's alarming.  But it's important to remember these folks are working all day every day for years with this equipment.  Any scatter for years would be cause for concern.

Omaz

MHP - 'you did a lot more damage to yourself with chemo'?  Actually said that?  That makes me sooo nervous!!

LtotheK

Yeah, Omaz, that was the guy with the bedside manner of a king cobra.  An intern, and a major self-aggrandizing jerk.

My point, I guess, is more philosophical.  There just aren't hard rules around this stuff.  I know I damaged my body doing these treatments.  I also know that my having gotten it so young is really strange and unusual.  I don't think belaboring the stats is where the real answers are, at least not yet!

My father, husband and I are all above-average intelligence.  We read studies, went back and forth--the truth is, it's an interpretable science at this stage in development.  You can pull studies to substantiate so very many conclusions, and I'd suggest that every study on both sides has lots of elements you could punch holes in.

That is not meant to undermine the very serious concern for these treatments, believe me.  But, I also realize that I can try as long as I'd like, and with or without chemo, it's a crap shoot.  I simply realized that the studies that I read (I also understand there are time limits on this stuff, too, I had to move forward with treatment decisions) all seemed to point to the logic of the younger set going aggressive.  I didn't see a single woman under 40 being advised consistently against the standard treatments.  What I did see was one gal about 33 who was refusing treatment, and dying.  Hey, that's an anecdote, but I also recognize we all pepper our experiences with those, too!

Omaz

MHP - I agree and have read many many of those studies as well.  I keep wanting to find answers in the science and truly they just aren't there.