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.
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I was diagnosed in Nov 2012 with DCIS - non-invasive stage 0 cancer. I had a lumpectomy Jan 4, 2013 and just completed my first week of radiation. I have decided not to continue with treatment. When I went for my yearly mammogram in Nov. , I was told I needed an ultrasound for a suspicious spot and then immediatly had a biopsy. the doctors were so excited to have caught my cancer so early - stating this is what mammograms where made to catch - they told me they probably got the cancer with the biopsy. I then got a phone call stating yes it is DCIS - stage 0, non-aggressive, won't spread anywhere, 100% treatable - BUT a surgeon may want to clean up the area. After surgery, I was referred to a radiologist who said I now needed 33 radiation treatments. I asked about side effects which the doctor said would be "sunburn like skin changes" and I would probably get some fatigue towards the end of treatment. Well, on the third day i noticed breast soreness which I asked about and they said it was probably from the surgery. On the fifth treatment, the soreness was worse, and when I mentioned this to the technician he was surprised but suggested I get meds from the nurse.April 6, 2013 - 5:43pm
I don't feel I need this radiation, and am so worried about damage to my heart and lungs. I am not continueing this treatment and am so relieved that I have made this decision. I am so glad to have found this post by ANONYMOUS - your post helped me tremendously!! Thank you! and I wonder if you are still on this site as the date of your post is August 13, 2010... and I am writing this on April 6, 2013!! PLEASE REPLY!! I wonder how you are doing???
Just had surgery for DCIS they want me to have radition... It was very small and very close to the top of my breast? It was removed during biopesy.. Good clear margins. They say the radition would take me from 20% to 10% of it coming back.. Dont know weather its the right choice for me .April 3, 2013 - 4:47pm
The decision is ultimately yours to make. Before making your decision, be certain that you understand the benefits and risks.
My own experience involves brain cancer, not breast cancer. Radiation was recommended following excision of the tumor. I received two separate courses of radiation, one involving adjunct treatment with chemotherapy, to destroy any remaining cancer cells. As of today, I am two years in remission and counting.
MaryannApril 3, 2013 - 5:45pm
Welcome to Empowher. Ask your oncologist to explain to you the benefits and side effects of hormone therapy. I don't understand what you mean by hormone therapy for 5 years. Your physician knows your case and is the person to recommend appropriate treatments.
I am a cancer survivor. I was diagnosed with a rare cancer called olfactory neuroblastoma. By the time I was diagnosed, it was not early stage but rather had advanced from the nasal passages to the frontal lobe of my brain. The cancer spread to the right parotid gland and several lymph nodes on both sides. I have had multiple surgeries, several courses of radiation and chemotherapy. I am also a registered nurse who happens to have a bad family history for cancer: both parents and all but one grandparent died of cancer.
That being said, though a healthy diet is fine, if you have cancer and you want to fight it, the current modalities of treatment: surgery, chemotherapy and radiation therapy are your best weapon. Empowering yourself with knowledge, asking questions, finding the right physician or treatment center for you are things you must do. Yes, it is your body and you can either accept or deny treatment. To speak quite bluntly, if I had not undergone all of these treatments, I would not be alive. I hope that anything I have just said helps you in your battle against cancerFebruary 22, 2011 - 5:43pm
Thanks for reply, Sorry my name is Kat .
Lady with 2 left breast lumps. 1. 3mm 2. 10mm invasive with 4mm DCIS, nodes clear op. 19 nov 2010. Radiation course/Hormone tablets prescribed. Had radiation which finished last week and getting back to normal slow but surely. Just started HT but not happy. My oncologist gave me no information but did say on my follow up appointment that if i dont have HT i would have a 96% of re occurence so is it worth it, she gave me no figues (re not having radiation) so not happy that I have had to pump her for information which should of been made available to me from my first appointment. I have just read some of the replies that say that several if not alot of ladies are opting out of both. Should I reconsider HT if what people are saying is enfact makes things worse in the future.
KMarch 3, 2011 - 5:13am
I was diagnosed with 2 ductual breast lumps 2010. 1. (3mm DCSI grade 2) separated by 8mm gap 2. (4mm DCSI grade 1 with 10mm invasive ) no spread to the lymph nodes. I was very hesitatant to accept radiotherapy, or hormone therapy. I am now completing my 3 weeks radiotherapy this week, without any problems so far, but don't want to go on hormone therapy. My oncologist, says that I have a 96% survial without HT.
What are the advantages of HT for 5 years. I have no family history of breast cancer, had two children (but yes as they say had alot of stress related problems, and possibly heavy lifestyle which all adds up).
Any advice grateful. I wanted to do without radio/hormone therapies and opt for change of diet, health drinks. Wheatgrass, Flaxseed oil etc.February 22, 2011 - 10:53am
It is fascinating how medical knowledge progresses. For 40 years the surgical wisdom has been to take the sentinel node and if it shows any cancer cells, keep removing the lymph nodes until they are totally clear and/or all of them in any event. Terrible morbidity resulted for so many women - usually lymphodema ie., the massive swelling of the affected arm and affected side of the body. The pressure and ongoing pain as well as the management of what is normally a small issue such as a cat scratch or a rose thorn scratch assumed massive proportions. Today JAMA [Journal of American Medical Assoc] published research showing remomal of lymph nodes in early stage breast cancer has zero effect on overall survival. What does this mean for TO and T1 breast cancer patients? Removing our lymoh nodes - even in cases where there are changes in them - does not make us live longer in the majority of patients. This means most women in these categories are are having lymph node removal as a precaution when in the majority of them, it makes no difference to how long we live. In other words, serious over treatment. I believe equally that there are early stage breast cancer patients in whom radiation therapy can be omitted and for the same reasons - it is associated with morbidity and the medical profession have been as slow to research the no radiation option for early stage breast cancer sufferers as they have been for the past 40 years with no lymph node removal. There is a research lacuna and because of this research gap, the option was for lymoh node dissection [one, some or all] for most early stage breast cancer patients.February 14, 2011 - 1:39am
Now, post the JAMA study, some women with early stage breast cancer will continue to opt for more than one, many or all axillary dissection and therefore opt for the risking the morbidity that can result. Others will opt for much less lymph node removal based on this study and their personal assessment of the risks versus benefits.
Yet as of today, the lymmph node removal constitutes over treatment when the end result is considered to be its effect on our overall survival rates - but some women want to know they have tried everything.
The fact is over treatment with lymph node dissection has been "the norm" or standard medical treatment for the past 40 years in most western countries and as of today, it no longer represents the optimal standard of care for the sub set of breast cancer patients with early stage breast cancer.
Dear Cheryl A, Thanks for letting me know what you decided to do. I'll be thinking of you on 1st Sept. I wish I had more time to do research. My Mum has an overseas trip planned for September and I know that if I hadn't finished my treatment by then, she would have canceled her holiday. I didn't want that to happen so have jumped in quickly (3 weeks post op) to start the radiation. I guess I also felt a little odd about not doing all that I could to prevent a re-occurance. I just hope that the radiation does not annoy some normal cells into mutating... Its been lovely to chat to you.August 13, 2010 - 7:31pm
Hi Christine from Aussie, you are an amazing strong intelligent assertive woman and I wish I had read your blog before I decided to go ahead with the radiation. I am from Brisbane and would love to know what other information you have that could help me decide whether to stop the radiation before it does too much damage. Thanks.August 13, 2010 - 4:18am
Hello again - I am assertive - its true! I feel the cancer/surgery/anesthetic/shock etc has knocked a few IQ points off me and I am not as sharp as I was pre breast cancer, but I am confident researcher and able to process complex information outside my professional field. Those of us with slower early cancers also have the time to research. I realise not everyone has that luxury. I actually had to research and compile complex data from many sources during my working life so doing it is second nature after 30 years.August 16, 2010 - 3:10am
I work outwards from a few core principles - 1. its my body and I decide what will be done to it - no one else. I refuse to be railroaded or terrorized into submitting to anything and innately distrust any professionals who pull those tricks to ensure compliance and 2. medical advice is just that - advice. It's based on statistics and most medical stats that underpin treatment for serious conditions like cancer are weighted towards the heavier treatment end of the scale, as most medical researchers can't get human ethics permission and/or are too nervous/slow about researching less intervention methods. That and scared of being sued for undertreatment. So some of it is a butt covering exercise for them which has not much to do with what is in the patients best medical interests.
If you go to the 2000 report on Early Breast Cancer issued by the Australian National Health and Medical Research Council under the chair of Professor Christine Ewan, there is an very sound discussion of these issues from a strong informed patient consent model [with which I strongly concur] and a coverage of radiation in the radiation chapter, as well noting the research gaps for minimally invasive, ultra slow growing cancers. It is a good report to start with as its so fierce and direct about patient rights. Yes, its now 10 years old so research on early breast cancer treatment and radiation protocols post 200 needs to be looked at closely as well, which is what I also did. The researchers are proposing for example that women over 70 with indolent tumours may omit radiation but I note this was also the "safest" breast cancer patient group to commence this type of research on as if they got it wrong, well, at age 70 a life is almost lived anyway. There is still a research gap for us in the under 70 age groupings. Doctors usually don't tell us about raging controversies in medical treatment in order to to avoid what they call "treatment anxiety" but which I call a proper outline of treatment issues. They actually get taught NOT to tell us about these controversies and one of the major ones is how much treatment is overtreatment ie., unnecessary treatment for early breast cancers. Medical research takes many, many years to percolate down into daily hospital practice so the radiation protocols and advice we get are normally at least 10 years old for a start. Many medicos are also too busy to read latest medical journals in their area and so are not as up to date as those that read serious medical journals regularly as I now do on my topics of interest. There are credible medical data bases like PubMed that email you the most recent journal articles on your topics. I also subscribe to all the breast cancer trial sites all over the world so stay up to date with what they are testing and where it is up to on the trials schedule. Believe it or not I have actually had the radiologist sniffily dismiss a trial I drew to his attention of the Targit intraoperative device as a mere experiment. I see its an international randomixzed trial level 4, with solid data for the past 10 years and credible research presented at the most prestigious international breast cancer conferences, which refer to this as the new gold standard of treatment. It will probably be available in Australian public hospitals in another 10 years! At the moment only Charles Gairdner in Perth [part of the international randomiszed trial team we are not eligible to participate in] and a hospital in Melbourne called Peter MacCullum [open to private patients who opt for it] offer this in Australia. Those of us with significantly less aggressive tumours [sometimes called indolent or in my case, trivial] are lumped in with everyone else when it comes to radiation protocols and our access to less damaging forms of radiation in the event we wanted to access it are limited in many ways, some of which I have described here but by many other ways. I hope this post gives you the flavour of how I started and what I looked at.