Questions about radiation in early stage IDC

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. 

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

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, 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!

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