No radiation treatment

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ShaunaJ
ShaunaJ Member Posts: 5
edited June 2014 in IDC (Invasive Ductal Carcinoma)

 I was diagioned with IDC , Stage 1 Grade 1, 17 nodes removed, negative, Tumor 1cm, Estrogen + (positive) HER2 negative. Yesterday they offer me to start radiation treatment, no chemo start in 4 weeks. I choose not take it. I will start taking Tamoxiffen, one tablet daily for five year. I was not sure if Im doing right thing by not taking radiation treatment?

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  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2010

    Shauna ~ Did you have a lumpectomy or a mastectomy?  And did they recommend radiation to you?   If so, did they tell you how having it or not having it might affect your recurrance risk?    Deanna

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  • ShaunaJ
    ShaunaJ Member Posts: 5
    edited August 2010

    Yes, I have a lumpectomy, and yes they recommend radiation treatment, The oconologist  explained to me with lot of negative side effect. So I didnt want to take it.

    Shauna

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  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2010

    Did you speak to a radiation oncologist or was this your medical oncologist?  Normally, radiation is recommended when you have a lumpectomy.  Did whomever you spoke to give you a choice to not have it, or any reasons to believe you would be okay without it?  What negative side effects are you concerned about?    Deanna

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  • changes
    changes Member Posts: 622
    edited August 2010

    Hi Shauna,

    I hope you reconsider that choice and talk to your oncologist more about your concerns before you make this decision. Obviously, it's your decision to make, but with a lumpectomy, radiation is usually needed. It is a pain (I'm a little over halfway through my treatments now), but it is doable. Most of the side effects are temporary, but it really does reduce your risk of recurrence. Even with clean margins on a lumpectomy, they cannot guarantee that some cancer cells weren't left behind. They have to tell us the list of side effects for the purposes of informed consent, but it often makes things seem worse than they really are. Please have a heart-to-heart talk with your doctor, and maybe even get a second opinion before you decide against radiation.

    Best wishes,

    Karen

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  • ShaunaJ
    ShaunaJ Member Posts: 5
    edited August 2010

    I have no idea if she is a medical or radiation onocologist, when she walked in, never had proper introduction who she is. I had to ask her "who are you", her replied is "Im a doctor"

    Yes its my decision is not taking a radiation.(recommend to have 16 visits) She metioned that I will have 20 % chance to have cancer coming back. And my cancer cell is not a very aggresive so its a low risk that what she told me.

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  • ShaunaJ
    ShaunaJ Member Posts: 5
    edited August 2010

    All I want to know if there is anyone out there made the decision for not taking radiation treatment so they can share their experience.

    I had a rough life, I'm burn survivior, domentic voilence victim, Hep C positive, deal with the death of my son and my Dad on same weekend (2009), engaged to be married next year and now with breast cancer....why me? I dont want to get through again. I just couldnt.


    Diagnosis: 6/29/2010, IDC, 1cm, Stage I, Grade 1, 0/17 nodes, ER+/PR+, HER2-

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited August 2010

    Rather than no radiation, please check to see if you qualify for Mammosite radiation. It's 10 treatments over 5 days, then you are done!!!  It's just as effective as the 33 day plan, but a bit more intensive for the 5 days because you go two times a day.  I just finished it and I had no burns, no side effects at all (at least nothing I can see or feel on the outside).   Talk to a radiation oncologist .  You need a break - this might be a good opportunity for you.

    You're engaged to be married so surely you are looking forward to the future. Help to ensure a healthy one by doing some kind of radiation treatment.

    Good luck with your decision!

    Michelle

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  • ShaunaJ
    ShaunaJ Member Posts: 5
    edited August 2010

    Hi Michelle,

    Thank you! I will check and see if I'm qualify for Mammosite Radiation. I will also check online for more info about Mammosite radiation as well.

    Thank you again

    Shauna

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  • kira1234
    kira1234 Member Posts: 3,091
    edited August 2010

    Shauna,

    I agree with Michelle I have also just finished something very similar to it. The one I had can work with people who can't have the mammasite one. In my case my tumor was to close to my skin for the mammasite balloon. I had the Contura balloon. It was the same kind of treatment 5 days 2 times a week.

    Karen

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  • MarieKelly
    MarieKelly Member Posts: 591
    edited August 2010

    Shauna -

    You  wanted to know the experience of anyone who had NOT had radiation. I'm someone who refused it almost 6 and a half years ago for a small, grade 1 invasive cancer - you can see my stats below.  I also refused tamoxifen and arimidex, so the only treatment I've had since being diagnosed at age 49 is a wide margin lumpectomy. I've been in a natural menopause since about 8 months prior to the diagnosis. I've had no recurrence of the that cancer nor any new cancer since the original diagnosis despite refusing all treatment other than the lumpectomy and SNB. Which of course, is not to say that I never will but If so, my intention is to again deal with it in the most conservative manner possible.

    Just wondering - why did you have so many lymph nodes removed??  Did you have a SNB? 

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  • mairmicate
    mairmicate Member Posts: 5
    edited August 2010

    Hi Shauna, I had a similar cancer dx to you and was advised to have 6 weeks of radiotherapy after my lumpectomy but I declined as I was only 25, had never had kids and was worried that radiotherapy would mean not being able to breastfeed from that breast.  It's been 15 years now since my dx and I've never had a recurrence, but that's just my experience.  It took me a couple of sleepless weeks to decide not to go through with the radiotherapy; the doctors were not happy that I went against their advice!  I took a huge chance in not going ahead with it and a few people were puzzled with my decision but for me, it was the right choice.  Having said that, however, I'm wary of advising anyone else to do the same thing - it has to be your decision and you've got to weigh up the odds after researching it a bit.  I may be one of the lucky few who got the cancer early before it had a chance to spread anywhere else or I may be one of those people who think they're in the clear for 20 years and then it comes back (fingers crossed it doesn't!).  One never is completely free of this disease, no matter how many years pass by without a recurrence.  You could have the radiotherapy and still get a recurrence later on, no-one can fully guarantee anything.  Do what you feel is best for you and trust your intuition. 

    Best wishes to you, and believe me when I say I know what you're going through, it's not much fun, is it?

    Mary 

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  • 0000000
    0000000 Member Posts: 14
    edited December 2010

     I too am refusing the radiation and tamoxifen... I am glad to see that others are also refusing this "standard of care" which in my opinion is total overkill.  Plus, I am not encouraged by all the people who followed their doctors' advice and still had recurrance.  The important thing to remember is that you have thousands of "cancer events" every day and your immune system fights them off.  So, it makes no sense, absolutely no sense whatsover to do anything that in any way diminishes your body's own defence... radiation weakens your immune system and the drugs sure as heck do also.  the bottom line is the docs are stabbing in the dark.. they latch on to a therapy and feel good about it.. just like in the old days they didn't want anyone in the delivery room with women having babies... what a load of bunk.     I am totally confident in my decision and though it is encouraging to hear others who are doing the same, I would still follow my instincts even if no one else made the same decision.  You have to do what feels right for you.    Stress is the real killer and frankly all these cancer docs stress me out so I won't be seeing them after the lumpectomy.   Good luck to you all.

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