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I was diagnosed with a DCIS that proved to be 1.5 cm, hormone receptive, and was excised cleanly with the closest margin being 6 mm. I have appointments for a consult with a medical oncologist to discuss Tamoxifen and hormone therapy. I'm feeling pressured to have radiation, too, and don't relish having to leave my home for five days a week, for a six week treatment. I also have badly scarred lungs, and am super apprehensive about the possibility of more scarring.
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I had a lumpectomy for Stage 2 with 2.7 cm tumor with clear margin and ER+ . I cried and cried at radiaiton treatment day one and don't want to go to day two. my gynotype number was 18% recurrance so its low. My problem is radiation leading to leukemia other problems with lungs. i was a smoker and am concerned about heart and lung. I don't want to go back. My dad got CML after radiation and chemo. HELPPP!!!!
April 24, 2012 - 2:58pmThis Comment
If you think you need a second opinion, you probably do. My husband and I had looooong talks about this same issu. I visited lots of websites, read everything I could, and talked to lots of women who had coped with the same confusion. It's been eleven months since my surgery, and I'm still glad I didn't succumb to the SOP (standard operating procedure) in place that may or not be there as a "just in case" scenario. The bottom line for me was that the minimal benefits came with major side effects that I knew would not be worth it. There are absolutely no guarantees about what will be best for you. I think that may be the hardest thing to accept. We want the medical to fix everything, and that's just not realistic.
January 3, 2012 - 11:40pmOne other thing: my surgeon went to a conference about the timing of the first post-surgery mammogram. Since my mammograms were always painful, I was dreading the thought of getting my tender breast mashed flat at six months. Lo and behold, he called and sais that, for me, waiting until a year after surgery would be fine. The fact that I form keloids may have had something to do with it. However, he also said that scar tissue can result in false positive readings. Seems logical, yes?
My advice is to talk to as many people as you can. If you decide not to have any adjutant treatment right away, you may be able to change your mind later. Ask your doctor.
Good luck! And let me know how it goes.
And huge props for kicking the smoke habit!
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I had a lumpectomy a week and two days ago. I am being told I *need* radiation. I am questioning this. I had dcis and the surgeon says he got all the cancer out (clear margins well defined). I just wonder why everyone is pushing me to have this radiation. I am not sure I believe the risks outweigh the benefits.
December 31, 2011 - 11:32amI am 62. I am healthy in every other respect as far as I know. I did smoke for 46 years but quit on Oct. 29 and am now a non-smoker! yay!
I have an appt. at the local cancer center to talk with the radiation doctor (I already saw the oncologist before the surgery). I am wondering if I should get a second opinion on this?
I am very confused.
Thanks for any help!
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I have been reading all this and feel the same way, radiation has become SOP, I disagree and think it has become something they demand and is not for them to do so. I had invasive ductal cancer, her positive, do not have genes, had lumpectomy clear margin, sentinel lobes clear, I have implants and radiation will burn them up along with me. Have severe asthma and radiation will hurt my lungs. I am refusing, had to say no but promise I would think about it or they would not do my lumpectomy So it's done and they can not force me. I will not do it. One day when they come up with better treatments okay for now not way. if you have radiation you can not have it again, If you have radiation you can not have reconstruction with implants, YOu re left with flap surgery, lost muscles in stomach and horrible scars inside then outside. NO way for me. Good luck in your desicsions. read and don't let these doctors bullyyou.
November 8, 2013 - 4:04pmThis Comment
I am half way though radiation, but want to stop, just don't feel it is necessary. I have DCIS with 1.5 cm hormone receptive. I haven't
June 12, 2011 - 9:09amspoke with the oncologist yet will see him tomorrow.
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For my own circumstances, my own parameters, I know that my decision was right. My tumor was a DCIS, non-invasive, 1.6 mm, hormone receptive. None of my close female relatives had breast cancer before menopause. My compromised lungs due to childhood illness and smoker parents brought another level of concern to the table. I had been told that there was a chance the radiation would affect my lung. I wasn't willing to take that chance.
June 12, 2011 - 12:39pmI think what we all need to remember is that this is an intensely personal decision. All the doctors in the world can't really get inside your head, and your heart.
It's a balancing act using the professional advice and experience and your own knowledge of what's right for you. I'm not sure that anyone is ever 100% sure of the decision she makes. I think that's just the nature of being human. Paraphrasing the incredibly wise Maya Angelou: Do the best you can with what you know. When you know better, you can do better.
I understand, I think, how you feel. I can only wish you the best possible outcome, and promise to listen again if you need me to.
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Hi JuliMarie,
February 25, 2011 - 8:13amThank you for your question and for joining EmpowHER. DCIS is a serious thing, and your doctors are working to ensure your survival from this condition, and proper containment of it to avoid future complications. If you are uncertain about treatment, talk with your doctors and please tell them about your concerns. Make sure you are satisfied with the answers. It's normal to be scared when facing something like this. I can only imagine what it must be like. If you are not receiving the level of care you would like, then you can go to a different doctor you would be more comfortable with. It is up to you to advocate for your health, and work with the doctors to make sure you get the best treatment possible.
What do you think about that?
Here are some articles about treating DCIS that may provide some insight and help you to advocate for yourself:
EmpowHER ASK: DCIS Treatment, Hormone Therapy, EmpowHER: DCIS Advocacy Sheet, and EmpowHER: DCIS Information and Articles.
Good luck and let us know how you're doing.
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Since that post, I've had still another consultation with still another doctor. This doctor, a medical oncologist, was superb at listening to my reservations about radiation therapy and endocrine therapy. He reviewed my history, both recent and familial. He gave me the statistics, debunked some of my fears, and then flat out told me that I wasn't crazy to decide that I needed no further treatment. I may have a recurrence; neither radiation nor hormone therapy guarantees I won't. The side effects of all the treatments, when weighed against the minute benefits, helped my husband and me make the decision. I'll probably need mammograms every six months for a while. That I can handle with grace and humor! I did get a call from the radiation oncologist's office, and when I told the nurse about my decision, she seemed to want to pressure me to change my mind. I'm totally comfortable with my decision, and only time will tell if it's the right one for the long haul. For the foreseeable future, it's the best way for me to handle my life.
March 11, 2011 - 4:26pmThis Comment
Well, there you go! You are in control, and that is something, isn't it? I sincerely hope that the information we provided was helpful in some way to assist you in making the decision and/or advocating for your health. That's what we're here for!
March 14, 2011 - 8:35amGood luck, and keep us posted as you continue on your journey.
Take care,
Christine
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