Improved
6112 HealthChanged
3786 LivesSaved
3568 Lives0 lives impacted in the last 24 hrs Learn More
I was diagnosed with DCIS in early May of 2010. I had a lumpectomy done on May 24th of this year. The pathology report showed it as Stage 0 Nuclear Grade II. The tumor was ER and PR Positive. The surgeon felt good about getting it all and the margins were clear to greater then 5mm. My question is whether or not I really need to expose my body to the effects of radiation and or hormone therapy if my cancer was so small and caught so early. Are the benefits of therapy truly going to out weigh risks in my particular case. I feel as though the recommended treatment may be an across the board type of treatment for all DCIS. Has anyone experienced this and is there anyone out there who can relate to what I am questioning. I need to make my decision concerning radiation rather quickly.
Thank you,
Cheryl
All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.
Add a Comment27 Comments
Hi Cheryl - The ultimate decision on what to do is yours, of course. Have you had the chance to discuss this with your oncologist, or were you just told that there was only one course of treatment for you?
Radiation treatment after surgery has been shown to cut the chance of recurrence in half, according to the National Cancer Institute: http://www.cancer.gov/clinicaltrials/results/DCIS0309
Radiation therapy is also used to destroy any DCIS that may still remain: http://www.dcis.info/treatment-radiation.html
Others have had the same questions as you, and an extensive study was done in Europe to compare the results of patients treated with and without radiation therapy. The EORTC trial randomly allocated over 1,000 women with DCIS treated with lumpectomy to receive radiation therapy or no further therapy. Follow-up of this study was over 10 years. The 10-year relapse-free survival was 74% for women treated with excision only, and 85% for those treated with additional radiotherapy. You can learn more here: http://professional.cancerconsultants.com/oncology_main_news.aspx?id=37650
I hope you also hear from other DCIS women, but in the meantime this information will help provide some data to use in making your decision. Will you let us know if this helps?
Take care, Pat
June 15, 2010 - 5:39pmThis Comment
Pat,
June 16, 2010 - 7:59amThank you so much for your response. It helps just to hear from others who have been there.
I have talked to me oncologist & radiation doc. They both say that tamoxifen along with radiation is the recommended treatment plan for DCIS. They both said the decision had to be mine but that was their recommendation. The radiation doc said that if I chose not to follow their treatment plan I would need to have diagnostic mammograms regularly and keep a close eye on it. If it did come back he said it is not fatal; that they could just remove it again(because of how small it is and how clear my margins where). That is why I am questioning doing the drug and radiation treatments. Also, I have heard that radiation can only be done once. Does anyone have any information on that?
Thank you again Pat. You have given me some good information to look into. I am so new to this and I guess I am just scared and confused. I do not want to make a wrong decision.
Cheryl
This Comment
I also was diagnosed oct. 2010 with 2 left ductual lumps invasive. 1. 3mm and the other 10mm with 4mm DCIS these were separated by 8mm gap. I had op. Nov 19th, all was good with no spread to lymph nodes. Finally after 2 failed attempts to see my Oncologist (was reluctantly to start radio or have hormone treatment) who was not alot of help.
February 23, 2011 - 12:49pmStarted Radio 7th Feb. Advice: I have changed my diet, no binge eating sweets at night (as i was terrible), green tea with honey (good for cleansing the system) - still have my coffee, changed my milk to soya milk which is high in calcium. I eat more veg, and fruit.
A week before starting radio I began to drink more water 3-4 cups aday. I got the E45 cream (I do have sensitive skin so this was best for me), started mosturising the area week before.
Started radio, and it took about 4 days before i felt abit tired (but dont forget I was travelling daily backwards and forwards 150 miles daily), was sensible went to bed earlier, and eat a teaspoon of honey, and crystallised ginger to help stop slight nausea (kinda like morning sickness). I did not have any problems with blistering (well to date), or dry skin. Sometimes my skin was red after treatment, but that faded after a hour. I brought from Asdas 4 cheap cotton bras (no underwiring), which was comfortable to wear.
I decided that it was mind over matter re treatment with radio, and that if i could not see anything less stressful, and it has worked. Brought from Boots for £3.00 eye mask that u wear on the plane (look for travel section) - these are great. No matter what people say it is only when u go and see for yourself. The staff are brillant, and very nice, u undress in cubicle, wear a gown, they call u and u then go in, (like a corridor, which leads into a large room with sports couch - not comfortable, but hey u arent there long). I put the mask on as soon as I lie down and get in position, then i try to relax, it doesnt hurt at all, trust me, and as I said I only got slight redness after some sessions. I am now nearly my 3 weeks, so i hope this gets to u before u start.
All the best.
K
This Comment
Cheryl,
January 8, 2011 - 4:25pmI am going through the exact desision-making process that you wrote about back in June. My DCIS is low grad and small and my surgeon feels confident they have cleared my margins. All of my Dr's tell me radiation is the "standard care" for DCIS but I too have read alot of articles that is some cases (such as mne) radiation is not necessary and found to be over aggressive. My concern is I'm only 47 and hope to have a long life ahead of me. Does that put me at higher risk? I also fear that if it comes back, will it be caught early enough or do I risk invasive cancer and more drastic steps next time. I'd like to hear from you as to what option you choose and if you choose radiation how you feel about it now.
This Comment
I decided not to have radiation or hormone therapy. I feel that my decision was the right one for me. I know how hard it is to make that decision and I wish I could say that I was 100% sure I made the right choice. So far my follow-up exams have all been clear. I do see my surgeon every three months. I have had a mamo since the surgery and that too was clear. So with each thumbs up I get a little more confident. I feel as though I thought through my decision very carefully and did a lot of research. I finally got to the point that I needed to make that decision, stick with it and go on with my life. I feel I have done that and just pray that the cancer stays gone and I will enjoy and long and healthy life! My thoughts and prayers are with you as you make your decision....just do what is best for you!
January 9, 2011 - 10:41amGood luck and God Bless
Cheryl
This Comment
Hello to all of you!
September 23, 2012 - 12:32pmIt has been more than two years since I had a lumpectomy (summer, 2010) after being diagnosed with DCIS. Under 3 cm and wide margins after lumpectomy. I also chose no radiation and no tamoxifen. It was a decision I made after researching, and I did not have the radiologist or the oncologist argue with me about this decision. So I am continuing to get mammograms, annually now, and feel fine. I wish more of us would write, and give hope and choices to those who are having to make these big decisions so quickly! Good luck to all-
Val 9/2012
This Comment
Your post is very encouraging to me. Late Dec. 2010 I was diagnosed with stage 1, colloid (invasive) ductal carcinoma and DCIS. Both are small, very close together, slow growing, estrogen/progesterone receptive, HR2-. My BRCA1/BRCA2 genetic testing is negative-YEA! I also have recently diagnosed low-grade Lyme disease, which symptoms my MD's have said for 23 years were just "all in your head", or only "the way your body is".
My lumpectomy is scheduled for 2/17. My surgeon really wants me to have 6 weeks of radiation followed by hormone therapy; however, I'm choosing not to follow that path at this time. I see 2 naturopaths, and am quite certain that radiation and hormone therapy are not what my body can handle now, and will cause me more harm than good at this stage in my journey.
This isn't a decision that has come easily or lightly and has included a lot of tears, research, soul-searching, and conversation. I'm relatively certain that my surgeon will have a tough time accepting my decision. I'm not a statistic-I am an individual who hasn't really fit any particular mold with any other condition I've ever had. I believe that my cancer is a combination of environmental and stress-related issues over a long period of time. Everyday there are new advances in care that are less invasive to the entire person, and I'm willing to take the risk to do what I need to do naturally to minimize recurring cancer elsewhere in my body. It's wonderful to hear of other women being their own advocates, and owning their own power in dealing with cancer care.
February 10, 2011 - 3:28pmThis is a great forum, and I look forward to hearing from other women on this same, challenging path, since it will be ongoing the rest of our lives.
This Comment