ask: Hormone therapy/radiation necessity for early stage DCIS
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
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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
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.
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
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.
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
Hi Cheryl - It sounds like your medical professionals were very straight forward with you. It also sounds like you're doing exactly the right things to take charge of your health.
The way a lot of the information is presented is confusing, it's like learning a whole new language in many ways. As a breast cancer survivor I've had to keep up on new developments for more than 20 years now, and am glad that I'm around to do so! :-)
In terms of your question about radiation being done only once, I can help you with information. The American Society of Clinical Oncology (ASCO) recently held it's annual conference in Chicago and announced the results of a study on this. I'm going to give you a link to one article and if you'd like more you can just use Google News and get it.
http://www.modernmedicine.com/modernmedicine/Modern+Medicine+Now/ASCO-Ta...
I'd also like to suggest an article that I recently wrote that I think will also help you in finding information to help in making decisions:
http://www.empowher.com/cancer/content/empowering-cancer-patients-how-yo...
You may also want to see if there are local support resources to help you, not just with this decision but with living with cancer. Your life has been changed forever, and it helps to have others to talk to who truly understand that you have fears and concerns and sometimes just need to let things out. There are some wonderful organizations, like The Wellness Community, that help with diet and nutrition, exercise, stress relief and many other concerns. I hope you will see what's available to you or if you need help with this I would be happy to do some research.
Keep on your path,
June 16, 2010 - 5:29pmPat
Hello Cheryl,
I am in a very similar situation to you. I had my lumpectomy and sentinel node biopsy on 13th May 2010. I am ER and PR positive. I have tubular carcinoma of 6mm with a tiny, tiny percentage of DCIS. I have clear margins of 11mm and 12mm - I know its huge but I instructed my surgeon to go for it.Its a very, very slow growing, non-aggressive breast cancer. My oncologist warned me that I was very fortunate to have such a "trivial cancer" his phrase - and the BIGGEST DANGER to someone in my position was OVER TREATMENT. He said he did not want to put me on any chemo and no hormone or other drugs. I had my Radiation Oncologist meeting last week and I had read all the reports referred to above which portray radiation as statisitically important in ones survival as well as in relation to local or distant recurrences. However, those statistics being quoted are not JUST stats for women with our type of low level, early stage, non-aggressive cancers. They lump everyone in together and then come up with averages. That is why accepting that bald statistics like women who forego radiation face a 50, 60 or 70% chance of recurrence. This is what you need to do Cheryl - you log on to Adjuvent! and fill in all your personal cancer stats [or ask your Radiation Oncologist to do it for you and supply you with the stats a few days before your appointment]. I did this myself and also the Radiation Oncologist did it. He recommended I receive the full blast 6 weeks whole breast radiation and one week of boost. I then asked to go over my personalised stats. This is what they revealed - I have a 5% chance of a LOCAL recurrence of breast cancer over 10 years! If I receive the radical radiation he proposes, my chance of a local cancer recurrence drops to 2%. Yes, folks thats right. I get a whole breast irradiated and face the terrible morbidity associated with that, all for a measly 3% increase in local recurrence rates over 10 years. Quite frankly, I would rather have my breast more closely monitored over the next 10 years than have radiation. You know what else they don't tell you? If you get radiated, then its a one shot deal. So if cancer returns and god forbid its a nastier form, then radiation is not an option a second time around. That means a total mastectomy! Yet if I opt for closer surveillance, and cancer is found, I can elect to have another lumpectomy - no problems. And if its more serious I can reassess my stats and choose or not choose radiation. The other thing I find interesting is Radiation Oncologists lying my omission or failing to disclose full facts about radiation side effects. It was fascinating to see my guys verbal gymnastics. When I asked as morbidity, he referred to relatively mild things like pinking of the skin, maybe some sunburn so I pressed harder and he offered up blistering. Hmm, Blistering, I asked if this meant like little water blisters you get on your finge rif you burn yourself or were we talking about large liquid filled blisters that hung off one's breast and burst and could get infected with pus running out of them. He admitted they could be big blisters. I then said he saw this stuff all the time but it was hard for me to imagine - could I see some pictures of a mild case and a bad case. Guess what term he then commenced using as soon as I indicated I wanted to see some photos - "ulcerations," Yes, that was how the language evolved as I pressed for more information. I have independently researched morbidity associated with radiation and its really, really serious for many women and can last a year or in some cases only reveals itself many years later. Cheryl, I would therefore urge you NOT to accept the bald over arching statistics based on large populations as the overwhelming majority involved have far, far more serious cancer than you or I do and the conclusions are NOT as relevant to women in our situation. DO not under any circumstances agree to be radiated until you have had your own personal stats, based on your diagnosis and your histopathology reports inputted into eg., Adjuvant! and you get a copy of it and understand the stats that apply to you. I cannot see in cases of early breast cancer like ours when the cost/benefit analysis of radiation - in my case a measly 3% - can justify the terrible damage radiation does. Nor can it be justified when you realise it is a one shot deal and once you use it for that breast, thats it. You can't do it a second time. Monitoring every 6 months could be seen as an inconvenience to some women but I would prefer it any day over dealing with breast necrosis, skin retraction, lung occlusions, blisters, radiation burns, ulcerations and all the other notorious sequelae from radiation. You need to not let the doctors take over and tell you what to do. You need to be pushy and skeptical. When I pressed and pressed the Radiation Oncologist as to why he was recommending scorched earth radiation for me - given my brilliant stats without it and minimal advantages with it - he only came up with two answers. 1. My age [I am nearly 52] and 2. His radiation staff had empty dairies!!! No need to tell you which one I suspect was the more important one for him. My morbidity fears did not even rate even though I had a strong history of skin problems, poor wound healing and huge skin allergies. I also have large breasts which is a notorious factor in worse morbidity. It seems all his radiology team met and discussed my case and they agreed I needed full breast radiation. I was told this in a manner I think to influence me into going along with their agenda. Needless to say I was totally unimpressed with the recommendation and the reasons given in support of it. Please do not be a passive patient in this. With your stats, it is highly likely your 10 year danger of a local relapse is close to mine. Remember: its just a local relapse - its not distant metasteses and its nor death! Fight hard for ALL your personalised stats [local relapse, ipsolateral relapse, distant and death] over 5, 10 years as well as true facts about radiation morbidity. I swear - getting the truth out of them is like pulling teeth from a bear with a pair of pliers but stick with it and DO NOT agree to radiation until you have ALL your personalised stats and time to read and study up on your options.
June 19, 2010 - 7:17amThank you so much for taking the time to give me so much information. I cannot tell you how much I appreciate your advice. I am even more sure now that I want to take my time and make sure any decision I make is what I feel is best for me.
June 19, 2010 - 1:19pmIt is so good to have a place to go and share fears, concerns & questions.
Thank you all!
Thank you anonymous for your candid approach. I will pass this on to my mother so she can make a better decision.
July 25, 2010 - 9:39pmCheers, Suzanne