Afraid to do radiation but feel I don't have a choice

Great scores raspberry ! I'm glad you've got a good GP to restore your faith in the medical profession. That nurse was waaaay out of line; I hope your email was a wake up call for her. She's obviously in the wrong field.

Great point, Diane. I actually think that radiation is a good and safe treatment option for most BC patients, but not all. The problem arises when the medicos try to force the standard of care on everyone despite their valid objections. Prone radiation was not an option here in our small town so the RO was clear about my risks and actually gave me the option to refuse. For someone with a more aggressive tumor those risks would have been justified, just not for me. And I totally agree that no second guessing is the key. We have to do what we think is best and not look back. I'm glad your experience with rads was positive. It helps to keep fear of the treatment out of the equation for those who are still deciding.

Hello Everyone,



I'm scheduled for rads this coming Monday. I was initially scared, but after doing research I found that I was a candidate for lying on my stomach instead of lying on my back for the rads. MO also said it was better for my skin and 86% less chance of affecting my lung. My tumor was on the right breast. I asked my insurance company to switch to a location in my city that has experience with the prone position and I was granted my request. There are studies which show prone position is much better. This is not offered everywhere, and not everyone is a candidate for prone, but if you are a candidate, and if your scared of lung damage, then please check do your homework and see if this is for you. With modern technology we should be able to research our diagnosis and discuss options with our Dr. and insurance to see which option is best. Anytime I don't feel at ease with my treatment I question if its right for me and then do more research. I'm hoping everyone is getting the best treatment for them!

Hello ALL - cannot sleep with this dumb fever and major major body aches.  Popping the pain meds. regularly tho.  

I too was very nervous and anxious about RADS but after 8 of 15 treatments I must say it is a "piece of cake" compared to chemo.  It actually takes longer to undress and then dress again than the treatment lasts.  I am quite surprised and pleased.  So do not worry out there, things will turn out much better than U think.  Having Sat. and Sun. off tho is very nice!  Keep the faith y'all and have a blessed Sunday!

Oh Ms. Lunchlady61 - Believe me, I was as nervous as U are before starting my RADS because I too read waaaaay to much about it.  But after 8 treatments with simultaneous boosts, I must say that it is really a "walk in the park" compared to the surgery and chemotherapy I was forced to endure.  U will B just fine......promise.  And if U ever have any questions, just ask any of us "experts" here and we will get U thru it.  One thing to remember tho, use the aloe Vera and moisturizer that your RO suggests as often as possible.  Just do not use it within 4 hours of your treatment, OK?  And keep us posted on your progress if U can my Dear.

ALL THE BEST TO U TODAY WITH PEACE, PRAYERS, HUGS, LUV AND BLESSINGS.

Carolyn

I need help in how to make a change to my treatment plan:

I am interested in prone, partial breast radiation (PBI). More than interested, I insist upon it.  I want only the tumor bed to be treated.  I don't want accelerated partial breast radiation (APBI). My cancer center does not offer prone radiation, and the Rad Onc Dr. is not willing to consider anything but standard treatment ("not one treatment less than 30"). 

 I am only a few days from surgery, and see the Rad Onc Dr. a week later.  I have found cancer centers that offer prone treatment in nearby cities and states (2 hours drive time).  Any suggestions on how to find someone who will do PBI?  Just calling on the phone "I know you don't know me or my case, but if I sign a waiver would you be willing to forego the standard of care?" just doesn't seem very practical. I work all day right up to the day of surgery, so can't make the calls myself anyway.  My helper has located places that do prone radiation.  I could try to go for a second opinion and try to persuade the doctor, but that's just one doctor out of dozens who might do it and would be my only shot.  Already tried clinical trials.  

What do you think about contacting the chief of radiology in the centers with prone treatment and asking him/her to find out if any doctors in his group would at least consider PBI for a patient who otherwise would have no rad treatment?  How urgent do you think this is - I"m stressed that I don't have a new Dr and treatment center already lined up and fear I won't feel up to dealing with this the week after my surgery.  I also thought that maybe the clinicial trial doctors would treat me outside of their trial - at least they are used to the protocol and are more open-minded.

Anyone know of patient advocates who could try to work this out for me?  I don't know if my insurance covers the other facilities either.  I need a step by step game plan of what to do and in what order.  Can anyone help me please?

I saw two Radiation Oncologists today and both recommend the standard of care treatment.  That is to be expected.  The second one I saw was out of state, and this "second opinion" will not be covered by my insurance.  That doctor spent 1 1/2 hours with me and explained radiation treatment very thoroughly and answered all of my questions.  I still do not want the treatment they recommend and neither will consider using the standard UK treatment (less grays less time). They are forcing me to forego radiation altogether.

If a doctor told you that 40 mg of a medication was their recommendation and you told them that you would take 39 mg gladly, just not the 40 mg and would sign a waiver of liablitiy, why would the doctor say, 'fine, don't take the medicine then"?  That is the position these radiation oncologists are taking.

If they did the treatment backwards, starting with the boost and then irradiating a larger and larger area, I could just skip the last treatments if I chose to.  However, the way they do it means that the parts of your breast that are healthy get radiated first and they don't focus on the tumor bed until the end.  I am so upset by these two consulations I can't stop crying.

I didn't have radiation I had mastectomy because their were 2 tumors multi centric. I too was afraid of radiation and chemotherapy .