Radiation Therapy for early stage

KAARA, I refused radiation (and hormonal therapy too) back in early 2004. My surgeon removed the biopsy track - some automatically try to do it and others don't bother figuring radiation will take care of any stray cells left behind in the track. Even if he hadn't removed it, I still wouldn't have done the radiation or anything else because of the kind of cancer I had. Large, clear margins are a major plus in reducing the risk of recurrence for any grade and having a local recurrence from a small grade cancer isn't the end of the world. If I get it again, I will simply have another wide margin lumpectomy (assuming there's no contraindication for doing so at the time). Meanwhile, I've had nearly 8 great years not dealing with any side effects from treatment or worry about what radiation might have done to me... and no recurrence as yet!!. My breast looks prefectly normal and I rarely even think about BC anymore unless I happen to scroll across the link to this forum in my favorites list and decide to read here a bit. Not everyone who gets prescribed radiation after lumpectomy really needs radiation. It's a standard of care treatment, so it's another of the one size fits most kinds of therapy.

Do they give the same dosage to everyone? Even though we may have the same number of sessions, my understanding is that each Tx is customized to the patient and her anatomy. For example, I have a rare bone condition so I was extra-worried about future bone fractures and my RO told me that he was giving me the lowest possible dose that would be effective. (we also chose the 6.5 weeks of rads vs. a shorter period of higher-dosed rads). But that said, rads is all about trying to kill cancer cells that we can't detect today. So ... maybe the dose needed to zap them is the same regardless of the size/grade of the tumor. (hmm....not sure my comment is any help at all. ha!)

Kaara, I'm happy you found a trial for EB-PBI.  Hope it has worked out for you.  I have been waiting since early December to hear from the Oncotype-DX for DCIS and the MO received it last week.  My score was 18 which is low risk (this score is different from the score for Chemo) and after discussing it with my MO I told her I wanted to forego rads.  I felt sure she wanted me to get it but at the time I felt sure that I was ok without it.  Then, guess what?  I came home and started second guessing myself.  I haven't found any trials for External Beam Partial Breast Irradiation anywhere near me.  I think I would do that if I could.  The hospital near me does Internal Partial Breast but I don't feel comfortable with that from what I've read.  I'm very torn.  It's hard to decide to have WBR now since I have the low score from Genomic Health.  I guess there is no east answer which is what I was looking for when I asked for the test.

Kaara;  I do hope the stars are in the right place for you this time and you get in on those trials.  Did you learn anymore about the treatments themselves?  Hoping for peace for you.

ASCO: Is radiation therapy necessary in early breast cancer for women over 70?

May 21, 2010

Older women with early stage estrogen receptor-positive breast cancer may be able to safely skip radiation therapy (RT), according to research to be presented at the annual meeting of the American Society of Clinical Oncology in Chicago.  After breast conserving surgery (BCS) Over 600 women aged 70 or older with estrogen receptor-positive tumors, were randomized to receive radiation therapy followed by five years of tamoxifen or tamoxifen alone.  After 10 years of follow-up, the RT group had slightly less breast cancer recurrences in the breast, but no difference in survival, distant disease free survival, breast cancer specific survival or breast conservation.  Over 40% of the women in the study have died, but only 7% were deaths resulting from breast cancer.  The authors conclude that "with over a decade of follow-up, lumpectomy with antiestrogen therapy, but without the addition of radiation, is an appropriate treatment option for older women with node-negative hormone receptor positive disease. Further, the low rate of breast cancer deaths indicates that breast cancer mortality is not a major concern for this subset of older women."

Kaara...These studies are merely reference points for discussions with your medical team, so together you can make an informed decision.  My 86 year old VIBRANT mother continues to receive annual mammograms.  When I questioned the necessity of her going ANNUALLY, her doctor told me that she wasn't frail and that mammography was warranted.  He then went on to say, that perhaps she doesn't need to have it done EXACTLY every year, but as long as she's VIBRANT, she should continue to have them.  So of course, this year she developed a RARE favorable lung cancer and had radiation and is now NED.....Ironic.  Interestingly, the radiation treatment NEVER slowed her down.....She's something!

I was diagnosed with stage 0, grade 3 DCIS on Jan 11,2012..Because of the agressive nature of my DCIS, I chose to have radiation.  It was my decision and I know after educating myself that I would have been foolish not to choose radiation.  I feel powerful having chosen to proceed with it, and anyone dealing with Cancer knows that having some feeling of control and power is essential to your well-being, and I believe, success. My understanding, confirmed by my radiation oncologist before we started treatments, is that my radiation dose was determined by the size of my tumor (I think 2.5 cm.  Can't remember exactly now) and my age (54), and the fact that I didn't get clear margins and had to have a second lumpectomy that was clear.  I was not a candidate for the accelerated 2 week treatment because of my specific variables. My treatments are one-size-fits all only in respect to someone in my same general range of variables, not for just anyone with DCIS. We do radiation in case any undetected cells have "floated off" (this isn't the word the dr. used but the image I remember) and out of the clear margin area (of only a cm I believe) and were undetected by the PEM or other tests performed. This is from memory now:  my total dosage is 6800 Gys.  From searching the interent this falls within the range of general treatment amounts for my variables. My memory is the top amount was 7000. My 6800 is divided by 25 and a total of 1/25 is given to me each treatment from 2 different angles.  So far I have had 19 out of 25 treatments. I am on the table about 5 minutes and during the actual treatment I generally count to about 30, but again, it is not seconds they are giving me, it is a 1/25 of 6800 dosage. It might correlate to a number of seconds but that is just a coincidence. The machine will not turn on if everything is not aligned correctly for my particular variables and body.  My techs are great and I trust them.  Each Monday they weigh me to verify I'm w/i 5-7 pounds of where we started or I'll have to have another CT scan and they will have to recalibrarte the external beam accelerator to adjust for my body change and where we want the beams to hit.  Tuesdays, they take about 4 x-rays to ensure that my ribs and small "slice" of the lung in the field of radiation are doing ok. They can regenerate themselves after treatment. I also see the dr. that day to ask questions and have the site and skin examined. My skin is enviable:  I apply biafine 3x a day and wear a nursing bra with a loose top so I can open that side and have air around the radiated skin. (I'm too large to go braless and a nursing bra is perfect. I was going to make something when a friend suggested it and I thank her profusely! I am just starting to get pink under my arm. The main problem areas for skin issues are where skin meets skin so I fold the nursing flap under the bottom ridge of the bra when I have it open to absorb any moisture there, and so far, my skin has no damage.  Fingers crossed.   Last week I had a small infection starting in the incision site which was painlessly drained and this week I had more infection in the bottom of the incision so I stared 7 days of an antibiotic.  I had hoped my body could just take care of the infection, but I trust my doctor and have started the 7 day prescription.  I will also have a 5 day boost of radiation specific to the tumor bed site.  I don't know if that amount of radiation is in addition to the 6800 or if the 6800 is divided by 30 not 25.  But I will find out.  I obtained most of this information by requesting a copy of my treatment plan on day one of treatment, reading it and formulating the questions it generated. I also tried to formulate a general understanding so the doctor could correct me rather than just tell me what was happening.  I seem to remember and understand better if I try to make sense of something first.  Again, I feel empowered having this information. The plan is about 17 pages long and has images that help explain what the radiation is doing.  I hope this explanation helps others.

Hi Marilyn113:  I bought an inexpensice nursing bra at Walmart and it has been fantastic.  I am too heavy to go go braless, but can open that side and wear a loose top to work .  I am at day 19 of 30 rads and am just now getting pink under my arm. (Biafine 3x a day) Friction from clothes and lack of air circulation is what causes the sores and skin problem, as well as folds in the skin.  (according to my doc) I fold the nursing flap around the bottom band of the bra and that helps keep mositure from accumulating in that area.  Good luck! 

Hi Kel237,  sorry to hear you are going through this too, Please let yourself feel what ever you are feeling.  Just go through the big middle of it all. It is a big deal and you have every right to every little doubt and question and emotion, and yes, even the right to say I can't deal with this right now, that comes into your day.  This is your journey, your body, your life, your money and your decisions.  You deserve answers.

That said, it is hard to keep asking sometimes. I start to feel foolish.  Why can't I understand this.  Yes, I'm not a physicist, but certainly there is some pop-culture scientific explanation that I can understand.  I just need to ask the right questions.  For me, getting information, facts, about the radiation part of the process was difficult and I still haven't even figured out exactly why. If you feel like this too then please know you can always ask me and I'll tell you what I understand and you can verify it with your "team".   You'll learn who is the best source of info and it might be the radiology techs or the nurse or maybe even someone in the waiting room.  Learn their names and look them in the eye when you go in for treatments.  You are a person and so are they and they do want to help you kill the Cancer.  My RO is great and I always verify my understanding with her.  She loves it that I am interested in these treatments she has devoted her life to and she spends as much time with me as I need.  

So: your questions: I have DCIS Stage 0 grade 3 non-invasive,non-life threatening breast Cancer They didn't take any nodes because mine was non-invasive, meaning it had not yet left my milk ducts.  I imagine the ducts like the AC ducts in a house.For some unknown reason the cancer cells start to grow out of control and fill the ducts just like the AC ducts might get filled with dust.  Mine were filling the ducts quickly, grade 3. This 'expolosive' growth might hit a weak part in a capillary or in the wall of the duct and break out of the duct into the blood stream, or attic.  It is almost like a vacumn then and other cells follow:  wooHoo!  I'm going to the lungs!  Party in the colon!  follow me to the liver, or maybe some just head to the near by lymph nodes and set up house.  We caught mine before they had broken out. The docs generally do a dye test if there is any evidence that the cells have broken out.  If you can get a diagram of the breast and lymph system this will help you visualize why the cancer would first go to the lymph nodes.  Your pathology report before the first surgery should show if they thought the cells had broken out and the docs would need to see how far they had traveled starting first with the lymph nodes. Your path report must have suggested an invasion and they needed to be sure so they took the lymph nodes too.  But since your diagnosios is DCIS, IS standing for in situs meaning, in site, it hasn't broken out, your lymph nodes must have been clean.  This is my understanding but you might want to check with your doc.

A companion:  everyone is different and for me I prefer to go to treatments alone.  But if you want your husband there or he really wants to go with you (he is hurting too) then absolutely go together.  He will have to wait in the waiting room but you will have his friendly face and sweet hug when you are done on day one.  And you can tell him everything that happened, or not.  To make it less scary for myself, I look at everything.  I look around the treatment room before I get on the skinny table.  I look at the machine that is going to rid me of the cancer and I look at the red lights they use to line up the treatments.  I count the ceiling tiles so I can see exactly where I am in the room.  I'm not afraid and I want to remember every second of this eradication.  But you might just want to close your eyes and think of the beach. For me, facing it head on alleviates my fears. I ask questions and the answers calm me, too.  I am single but have a close family so have invited my mother, brother and sister to go with me to the final treatment. I don't know if they will accept or not, but I hope they do because it is less scary than I'm sure they are imagining. It is my choice to do this radiation because I KNOW it will stop this Cancer in its tracks. And I go into that room with this attitude: I'm in control here, not you, greedy, unwelcomed Cancer.

Your physical discomfort:  I have a torn tendon in my right shoulder so am very sensitive about my right arm and also had a lot of apprehension about having my arm in that position above my head. I live in Austin, Texas and we have a cool water, spring-fed pool (no Chlorine) and after my shoulder injury 4 years ago i got my range of motion back by gently working my arm in that water starting with a dog paddle and then working up to breast stoke.  My doc couldn't believe my progress. Butwith BC, I too was forbidden to get in the water till my lumpectomy incision healed so I don't think this water therapy would help you at this point. I also was not completely healed before rads started but it was my choice to proceed as soon as I could with the docs approval.  I do stretch before I get on the table. Let me know how this goes for you.  When I first got my scan I had the techs call the doctor in to see if we could adjust the arm position any to make it more comfortable for me.  You won't be in that position for more than about 5 minutes once routine treatments start, but that first day when they are setting things up it will be a bit longer.  I was really tense and made a strong effort to relax my entire body into the table.  I think this helped me . (For me they lined up light beams from different points in the room on my body and marked me with a sharpie that did come off on my clothes, but washed away when I did laundry.) 

 What can you do:  I was disappointmend that there wasn't alot I could do to help myself.  This is what I finally figured out I could do and was Oked by the RO:  Drink lots of water and stay away from anything that is dehydrating (alcohol/caffeine) Don't take any supplements except for a multivitamin for women bone and breast health: The healthy cells will do fine and if you take any supplements they will just helpt the cancer cells.  Don't make any big changes in your eating habits. If you shave, use an electric razor and use parabem-free, aluminum chloryhydrate-free deodorant. (Tom's of Maine works for me) The treatment area:  I started to put a prescription creme, Biafine, on from day one treatment. I had the nurse call it in so I'd have it immediately on day 1. Be sure to go all the way under your arm and fill the area they mark on you.  My doc said I didn't need to put the creme on till I started to turn pink, but when I read about this creme, Biafine, though it is topical, it also does go somewhat deep and I paid $105 for the dang creme, I am gonna use it, and it is prescribed for 3 times daily from day one.  (insurance hasn't decided if they will reimburse me for it!) Do you understand that the damage is coming form the inside of your skin and that is why we can't avoid any "pinkness"/damage. We want the damage.  We want to kill those stinking cells!  I will explain if you want cause I hadn't understood that this isn't a burn from the outside as it is often described.  Also: I have a pretty deep wrinkle on my face and put Biafine on it to see what it would do and it plumped it right up. I wouldn't do this all the time cause it makes me look swollen too. (Biafine is a French product and availabe OTC in France so it wasn't much of a risk to put it on my wrinklle.) I have 2 tubes;  one in my purse for right after treatment and the other on my bathroom counter and I use it 3 time a day, 7 days a week.  

The only other thing I can tell you is that my breast is very swollen and the nipple is really sensitive.   It sort of feels the way my breast feels before I start my period, so not completelty unfamiliar and not so terrible uncomfortable. A nursing bra has been great for me (I'm 42 DD so have a lot of weight on my chest and need some support) I wear a loose cotton T-shirt  and can keep that bra side open.  It is starting to get hot in Austin so I am concerned about where the breast hits my rib cage (keeping that area dry) and also keeping under my arm dry. When I am at home I try to lay on my back as much as possible because that is supposed to help the fluids drain away from the breast area and back int the body and I can open that side of the bra up and have air circulate around the area.  This reminds me of one other thing;  From the very first day of treatment my breast felt hot.  One of the rad techs told me that wasn't possible, that radiation had nothing to do with heat.  But I knew my breast was immediately hot.  I asked the doctor and she said yes, that is increased blood flow to the radiated area. On day 5 of treatments (during the treatments you are in the room alone) I suddenly felt 3 sharp quick pangs in my breast.  WHOA!   What the heck was that?  This is the only time I have been scared in this whole process.  I asked and again it was increased blood flow.  I have not felt that again, but I still have heat coming off my skin. Being able to open the nursing bra has allowed that to escape a bit easier I think, and with the oversized shirts my breast has some breathing room.

Again for me;  getting my mind right is the most important thing I can do.  I am in charge and Cancer is on the run.  You are going to do great, kel237.   You are going to kill this.  

Hi, Ladies, I just wanted to pop in here.  My doctor prescribed Biotene (I think that is how it is spelled) I paid my co-pay of $35. must be expensive stuff...I threw it all away in the garbage when I saw that it contains parabens.  I was so mad, then toward the end of my treatments, RO prescribed another cream, after I had complained about Biotene, and the cream had parabens...So.. if you girls are concerned about parabens, they are in prescribed creams, also.  I used Aquafor and when I had a few blisters underneath, I used Neosporin Ointment.  Worked really well. Is anyone having any trouble with the throat after rads?  I feel like I have a cotton ball in my throat all the time.  My rads ended in July.