Has anyone been offered new 3 week radiation trial?

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  • johnwayne
    johnwayne Member Posts: 36
    edited November 2008

    Hi Optimistic,

     Great logon by the way.  Sorry - I haven't logged in for a while and didn't see your posting.  I'm just wishing you the best.  Yes, it's all scary and the best we can do is keep pushing if something is not being answered or if we think it should be considered.  I myself opted for longer treatment, 5 weeks IMRT w/ a 1 week boost.  There is, in my non-MD opinion, some good research behind the 3 week method and I could see it soon becoming a "standard of care" treatment in the U.S., but my fear finally had me go with the longer term treatment.  30 years of good results is a pretty good track record and at some point you just have to make a choice - so I'm expecting the best.

     Just wanted to drop you a note and say hang in there and take care of yourself.

     Best, JW

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  • traveler56
    traveler56 Member Posts: 164
    edited November 2008

    I am just halfway through the IMRT -- in Albany, NY at a teaching hospital -- and have had no skin issues as of yet and just a little tired once or twice this past week but also got a surprise period so that could be the reason for that -- yikes, I am going to be 52 but was on the pill for 14 years till this past april so really did not know where I was as far as menopause.    But I guess I know now ! not done yet!

    Very grateful for the IMRT -- easy and cheaper with a $20 co pay each time -- and I trust my team there.    this whole BC thing is such a crazy thing anyway, and I was just not ready for a mastectomy.   If I have ANY further issues though, off it goes.

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  • optimistic727
    optimistic727 Member Posts: 12
    edited November 2008

    Hi JW,

    I'm very confused at this time.  My surgeon told me at follow up that my nodes and margins were free and recommended a medical oncologist who would prescribe tamoxifen.  My radiation oncologist, after seeing the lumpectomy results said if I did nothing further I'd have a 15% chance of recurrence, if I had radiation or tamoxifen a 5% chance of recurrence or if I had both the recurrence rate would drop to 1%.  I than saw the medical oncologist who blew both of them out of the water saying tamoxifen is no good.  There's a med that's newer and better. He then said I needed a PET scan and he was sending tissue samples from the lumpectomy to a lab in CA for a three week incubation study. I had the PET scan which is negative but have an appointment 15 Dec. to get the results of the samples sent to CA.  When he told me my PET scan was free he said he was also considering sending me for a new test called FISH.  I guess it has something to do with gene research.  Anyway I'm supposed to see the rad oncologist this week to begin the preliminaries for 6 1/2 weeks of radiation.   A nursing friend of my sister's, a 7 years survivor, said if the PET was negative she couldn't understand why the medical oncologist was doing all the other tests.  I'm beginning to wonder if I'm being used a guinea pig for new technologies.

    Brenda

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  • dldclub
    dldclub Member Posts: 7
    edited November 2008

    I am currently going to Hopkins,  I spoke with the oncoloy radiologist today.  I am trying to decide between lumpectomy or mastectomy.   The doctor did not offer a 5 day radiation unless I joined a trial and you wouldn't know if you would be selected for the 5 day or for 6 week side of the trial.   I am just over an hour from Hopkins and don't want to commit to driving there everyday for 6 weeks.   Hopkins doesn't offer mammosite,  and they don't offer 3 week radiation unless it is a combo with chemo.  I thought going to Hopkins would make all the best available to me, and all of you girls out there have come across so much more to offer.

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  • peeps1111
    peeps1111 Member Posts: 262
    edited November 2008

    Hi:

    Tamoxifen has been around for a while but everyone seems to be pushing Arimidex now.  If you start one and the side effects are bad, you can switch to another one.  I just saw a study that said based on the Ki-67 in your pathology report, that if that was high, Arimidex is better than tamoxifen but if that is low, that Tamoxifen is just as good over the long haul as Arimidex.  There are a lot of factors to consider with both medications so you might want to go over to the "hormone therapy" threads.

    Peeps

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  • pixelsupply
    pixelsupply Member Posts: 62
    edited April 2011

    I brought up the study as well to my Rad Onc and he said that it led to poor cosmetic results. However, that is not what the study said. I emailed him the study and asked if he had any practical experience with the technique that led him to believe that it would lead to poor cosmetic results. I am hoping he will either conceed that he was unfamiliar and explore it further or remark on his own practical experience. Just so I can trust him again. 

    And any doctors who read this, please quit lying to us. We don't live in a vacuum, you are not dealing with illitirates, information is literally at our fingertips.  Just tell us our options, the risks and let us decide. After all, it is our body, our life, and our decision. Oh and that "SPEAK UP" program should really go both ways!

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  • dventi
    dventi Member Posts: 171
    edited October 2012

    Hi Ladies, wondering if anyone who completed the 3 week protocol was happy with their decision?  Thinking about this option at NYU..... how were side effects? 

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