Topic: Why did you refuse Radiation?

I had the same problem in reverse, the oncologist assumed that radiation would be needed, the radiologist was ok when i told him I really didn't want to do it...he commented that he had read some research lately that supported my wishes....so I didn't have the radiation...frankly i was too tired from the chemo and surgery...I just didn't have it in me..I also couldn't understand what they were radiating since they just removed my whole breast...plus I had every single side effect you could have from chemo, so I had to assume I would have the same problem with radiation side effects and possible permanent damage and I said...I think not...no regrets...radiation is to catch a  local recurrence and the option remains open to you to have radiation in the future...

My disease was more advanced than yours and so even though  rads are the hardest of the treatments for me to accept, I figure I don't have much choice.

But I did refuse certain aspects of it.  They suggested I do 3 separate areas - breast, underarm nodes and the nodes above my collarbone (supraclavicular). 

I have pretty much decided to say no to doing the high nodes - unless they actually see something suspicious on the CT scan when we do the mapping.  I decided the risks outweigh the benefit - 

I am getting chemo for systemic control. I have read that the chemo doesn't work as well in the sites that had surgery.  Since there was confirmed cancer there, the liklihood that cells remain is high, and  I'm agreeing to rads there.

But the supraclavicular nodes had no surgery, and  no detectable mets.  So I've decided to rely on the chemo to take care of possible rogue cells in that area. ( I figure if the chemo isnt working in those nodes, it's not working anywhere else in my body, anyway.)  

It's hard, I'm not a gambling type of personality, I hate have to rely on odds. 

Bshoemaker - I just met with the Rad Onc today and she recommends rads because "I am young and will tolerate it well" and that even with surgery (bilat mx), chemo, another 8 months of herceptin and five yrs of Tamoxifen I still have a 15-20% chance of recurrence.   Both my BS and Onc could not say if rads were needed because I am in a 'grey' area with narrow surface (near the skin) margins.  My gut and heart say NO RADS! I had no node involvement and my deep (near chest wall) margins were clear.  My body is exhausted from surgery and chemo and I am not sure it would 'tolerate' another assault was well as it has the others.  Is this the right decision...who knows...can I live with this decision...YES! In the long run I think you just have to go with your gut...Best wishes in your decision!

I recently spoke to my breast surgeon who also had breast cancer and I asked her what she did & how did she make her decision.  She had 6 lymph nodes involved and they wanted to do much more aggressive radiation on her.  She was going to only allow them to do the standard, not the aggressive.  Her concerns were she was very worried about Lymphodema and being unable to operate if she lost mobility in her arms/hands etc...  Her friend told her do you want to live or work...she replied both.  We laughed about it...but her friend told her obviously living was more important and she said she realized she would never forgive herself if she didn't do what her doctors advised & she had a recurrence so she agreed to move forward with their recommendations. It helped me to hear from my own breast surgeon who has already walked in my shoes...how she came to her decision.  I have one more meeting with my Oncologist to discuss further, but hoping that my gut will provide me the answer I need.  Thanks ladies!

Irishred - Thanks for your feedback.  Yesterday was my last chemo treatment (#6) and I will tell you that with all the anti-nausea medication they have now for Chemo patients it's rare I think that folks throw up.  I never threw up once during Chemo and got through it fairly well.  I did have an allergic reaction to it, so they had to change my treatment plan a bit.  I found that I would do Chemo on a Thursday and just hang out around the house until Monday afternoon and be back to normal...so it would generally just make me feel a little poopy for about 4 days.  On Chemo day and the next day I didn't really feel bad...just Sat & Sun & part of Monday. 

My mom had breast cancer back in the 1970's and I remember how sick she was.  Her entire body bloated up and she was throwing up etc...  What I can tell you is now in 2009, they have made great strides to keep us from puking etc....THANK GOODNESS!   Knowing what my mom went through I almost feel guilty sometimes feeling that I more or less sailed through it.

Have you thought about seeing a female oncologist?  I tend to go with female doctors as I often find them a little more comfortable to discuss the entire breast cancer issue with.  My breast surgeon actually had breast cancer herself and had already walked in my shoes so it was a comfort to bounce things off of her such as why she almost refused radiation, but changed her mind and the reasons why etc... 

Just wanted to share that with you...not sure it makes a difference, but hope it helps. 

I chose not to do radiation based on many factors, mainly my age (63 after lumpectomy) and aiming for a quality of like versus quantity.   Lump was on the left side, my dominant side and I already have brachial plexopathy, due to multiple reconstructive surgeries on my hand and wrist.  You can google bp for details.   Short version: I have 30% of normal use on that arm/hand for about 30 years.   

Other reasons:  no lymp involvement, neo adj chemo destroyed cancer cells and shrunk tumor after the first treatment.   (dose dense chemo - 16 rounds before surgery).  Lumpectomy was successful to get clear margins and no cancer cells found.   Left side is the same side as the heart, and lung damage could happen.   Younger friends side effects:   lung scarring, severe skin breakdown and infection, pneumonia, cellulitis, lymphadema and those who reported such side effects and long term potential for lymphadema.  

I always have the option of mastectomy, bi lat mast, radiation and/or other chemo in the future.  I am er/pr negative, so hormonal tx is not done.   Herceptin for a year showed no decrease in my heart function and my latest mammogram ( yesterday, Nov 5, 2009 ) was clear and I was told to come back in a year.  

My family and I searched and found many, many articles on long term survival - basically a less than 1% chance of recurrence over 10-15 years with or without radiation.   Discussion with oncologist said  I had a remarkable response to the chemo, but rad onco hounded me to have radiation ( so many phone calls I had to block the number ) because there is NO guarantee all cells were removed.     Long discussions with family and I decided NO radiation at this time.  

Besides, I was having herceptin and if there was a heart problem, would it be from rads or H?   This may be too much information to process, but I am very comfortable with MY decision.  I can call myself NED ( no evidence of disease ).    Onco says I had a complete pathological response to the chemo.