Recently Diagnosed and Concerned about Radiation

hopie

Hello,

I was recently diagnosed with IDC- a shock beyond belief.  I am 42 yrs old with no history of breast cancer at all in my family. 

I had a hard time coming to terms with it.  Received a 2nd opinion from a University Center Hospital, which provided a bit more reassurance, but not much.

Good thing is that it was caught early with a 0.7 mm tumor and 0 node involvement during lumpectomy which was done on Jan. 5 this year.

I have been reading through these forums to see if women have similar diagnosis, but there are so many and I really haven't come across many as of yet, but I am sure there must be several - I would love to hear from you.

I was totally against chemotherapy, but I went ahead and submitted to the oncotype testing, which seems like such a raquet, but in any event, I agreed and the score came back low (12) which means a low chance of recurrence which is great and NO chemo!

 Questions I still have:

1) Why if onc score is low and tumor <1cm, the need for radiation at all?  I know they say that the chance of recurrence is significantly reduced (by 40%) -but is this really the case for smaller size tumors?

2) Why does the radiation need to last 6 weeks for a small tumor that is no longer in my body??  I have not seen effective research papers correlating effectiveness of this treatment to tumor size and age of patient. 

3) Seems as if people wait for radiation treatment, whereas my team encouraged me to start about 4-6 weeks following the lumpectomy - is this normal?

I am concerned about the radiation since it is targeted for my left breast.  I don't want any 'collateral damage' to any vital organs!  The team assures me that with the treatment plan they have devised, my heart will be untouched, and lung maybe a bit of scarring.  Still...so, I started the treatments this week - 4 of them - so far, not too much of a difference, except I felt a bit of pain in the upper arm last night and lower arm this morning-not sure what that could be-it seemed to have dissipated.

I have to say - Isn't there a Better way to treat this and avoid radiation and drugs altogether?!! 

If anyone has thoughts on radiation - timing of starting procedure and also linkages between size of tumor and effectiveness of treatment, or know of any great articles, please send my way.

And good luck to you all with the fight - I really have a much better appreciation for life after this trauma.

idaho

I started radiation a month after surgery.  Most women wait a lot longer because the do chemo first.  And I am sure there are better ways to fight this disease.. sure wish someone would hurry up and figure them out!  If you are interested there is a "natural girls" thread on here that you might find informative.  Wishing you peace and health.  Tami

ananda8

If you are uncomfortable with the need for radiation you need to get a second opinion.  I didn't want radiation because the surgeon couldn't explain why I needed it.  It wasn't that he wasn't clear in his explanation, rather I was incapable of understanding that day.  A second doctor, two weeks later said the same thing in a different way, and I knew I had to have radiation.

Believe me you must be comfortable with the idea of radiation or those will be the longest 33 days of your life.

YramAL

The way it was explained to me was that the Oncotype test addresses the risk of the cancer metastisizing to other parts of my body, such as the lungs, liver, bones, etc. My score was 11, so I chose not to do chemo. Radiation is for reducing the risk of a local recurrence-in other words, it helps get rid of any unseen cancer cells in my breast that were not totally removed in my surgery. It helps to keep the cancer from coming back in that breast. My doctor showed my the CT scan of the area that is being treated, and the range of the radiation. In my case, it totally misses my heart and barely, barely skims a small portion of my lung.

I started my radiation 9 weeks after my lumpectomy. My radiation oncologist said the ideal time is 6-8 weeks after surgery, but I was waiting for the results of my Oncotype test. If I had had to have chemo, I would have done that first.

pj12

Just to touch on a couple of your questions:

1: The oncotype score is based on the given that you are doing radiation. If you did not factor in rads, your risk of recurrence would be statistically much higher.

2. There are radiation programs designed to be shorter. You would  have to seek out a facility that offers that. Not all do.

3. There is a desired window of radiation to begin.  It is usually 4-6 weeks following surgery UNLESS you are having chemo. This time frame balances surgery healing to allow radiation against the time leftover cancer cells might regroup and begin to cause new trouble.

At this time radiation after lumpectomy is the standard of care. I know it is scary and we left-siders worry about heart damage. To a lesser extent, lung. Be sure your team follows protocol, if the machine freezes up and goes down, make them start over, expect them to pay attention, question them if things seem sloppy. Be your own advocate. If you feel like a therapist is careless, tell them you don't want to work with them.

Good luck

pam 

icey

Hi ladies, I'm getting ready for radiation this month. I call and asked today if I could have the partial breat radiation which is only 5 day to complete. They give u two treatments a day 6 hours a part. They told me in radiation that to call my breast surgon and that it was there call. So I am going to call tomorrow. The criteria I read online is 45 or older and I am 48. Less than 3cm in size and clean margins. Node negative. Do any of u have any info on this procedure? Let me know. Icey

hopie

Thanks again so much for all your responses.  I agree, I really need to in my own mind, be comfortable with the treatments (radiation).  I am just not accustomed to all of this - I have never had surgery or procedures beyond tonsilectomy as a child, so...it's just difficult to accept.

I want to do everything possible to prevent a recurrence, but I don't want to stop living my normal life.

I will also plan on checking out the "natural girls" site as well.

Thanks!

NatureGrrl

I think your questions have been addressed but thought I'd chime in with my own experience:  I had chemo, then a lumpectomy (would have been a mastectomy if I'd done surgery up front but by the time I got done with chemo they couldn't find any cancer, and all nodes were negative).  About 6 weeks after my surgery I started radiation.

For what this is worth:  You won't have to stop living your normal life.  Radiation isn't nearly as devastating to the body as chemo. A lot of the fear we have and stories we hear about how awful radiation is are based on old treatment plans.  They used to do fewer but more intense treatments, which were harder on the body, and they also can target the areas being treated much better.

I had some fatigue but nothing like chemo (which did significantly impact my life).  You may be tired, you may want to nap some or go to bed earlier, you may have some skin reaction (I had discoloration but no blistering or itching), but you will be able to live pretty much as always. 

My diagnosis was also out of the blue and devastating, but since I've been a caregiver for others who have gone through cancer, I wasn't uncomfortable with the treatment options I was hearing (it helped a lot that I already knew and trusted my oncologist and his staff).  By all means, get other opinions and ask all you need to ask to be comfortable with whatever you chose.  And listen to your gut. 

Best of luck and a warm hug.