Thanks and I hope I can contribute

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90norge
90norge Member Posts: 9
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

 Hello, a bit about me: lumpectomy 8/18/11. Started Tamox on 9/1/11 went for CT scan today to determine if I am eligible for a partial breast radiation trial.  If I qualify I will be in one of two groups that each get the partial breast radiation but use slightly different techniques.

I feel lucky to be in a position to have this treatment as an option but I also feel somewhat lost and alone because there is little information out there about this treatment and what to expect.  I have been lurking on this site for a while and have really appreciated the information and stories that I have read.  I am thinking about documenting my experiences (if I get in the trial) so that others can benefit.  Any interest?

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  • 90norge
    90norge Member Posts: 9
    edited September 2011

    I should also mention that this radiation treatment will be 2 times a day for 5 days instead of the traditional 5 times a week for 5 weeks whole breast radiation.

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  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited September 2011

    They offer this in the Aspirus/UW- Madison campus in Wausau, WI. My mom's best friend had rads for five days, instead of the usual longer period.I have not heard that her cancer came back. She was diagnosed November of 2010. 

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  • 90norge
    90norge Member Posts: 9
    edited September 2011

    Thanks Cinnamon

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  • jyg
    jyg Member Posts: 198
    edited September 2011

    As someone who oversaw the ethical aspects of medical research, I am concerned that you did not receive enough information from those conducting the study! They should have provided you with any and all information about the safety and effectiveness of this approach in easy to understand language - assuming you are not the in the very first group of human breast cancer patients to receive it. Are they looking at survival, recurrence, invasion all of the above, over what period of time? Will you be monitored differently than women not in a trial? Are you receiving the same total dose, just compressed over time?



    You can search clinicaltrials.gov for any similar studies to see if results have been published. Heck, if you are not comfortable or just have questions, call the study coordinator. The phone number will be on your copy of the consent form.
    Bravo for you for volunteering. Just be comfortable with it.
    Jan

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  • 90norge
    90norge Member Posts: 9
    edited September 2011

    jyg

    Thanks, I have been given information about results etc. it is basically the same as traditional radiation so far ( 7 years of data ph III study)  I was only bringing this up to possibly provide information about my actual experience.  I will be monitored more closely than women not in the study and over a longer period of time.  I am comfortable with trying this but I am still scared...

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  • jyg
    jyg Member Posts: 198
    edited September 2011

    I look forward to hearing about your experience! Decreasing the length of time for rads without losing effectiveness or efficacy, and maybe improving side effect profile?, would be a jump forward in DCIS treatment. Just curious, are they including women who are taking Tamoxifen or limiting age range?

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  • 90norge
    90norge Member Posts: 9
    edited September 2011

    well I am taking tamox so yes they are included. I believe you have to be at least 40 years old ( I am 42).  If I was older 60+ they probably wouldn't even reccomend rads. The rad dr. tells me that overall there is less fatigue and less skin damage with this approach.  Also less time and cost (from my own research)

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  • rn4babies
    rn4babies Member Posts: 409
    edited September 2011

    90......Can you tell me what the size and Grade of your DCIS was? I have an appt next week with a medical oncologist because my surgeon said I'm in the "fuzzy" area for rads. All along he said I'd need it until my final path report came back. All of the DCIS was removed with the initial biopsy. I am 47 years old.

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