After a long overwhelming and stressful. 2 months I finally decided to have RT for my left sided stage 0 high grade DCIS that had very clean surgical margins. I've read and analyzed countless medical journals and had 3 RT consults to come to this decision. Going to a hospital other than where I had surgery because they are not offering me a cookie cutter approach to RT. This doc is not warm and cuddly but I respect him and his impeccable credentialls. He says he will tailor treatment to my anatomy and use the most heart and lung sparing method for me.
CT simulation is this afternoon. I've been up most of the night crying and second guessing my decision. It still defies logic to me to take what is now "healthy and cancer free" breast tissue and set my self up for the associated risks of RT that include other cancers and heart and lung disease. Can't believe I'm about to consent to put radiation into my body to prevent something that may never happen again.
I feel like I've stepped into a never ending sink hole from which there is no escape. I think i never really came to terms with having breast cancer. Been so busy researching that I detached from the emotional aspect. I've been a mess since I got the call scheduling today's appointment. Trying to remain strong but this is much harder than I expected. I hope I made the right decision. It will take a lifetime to find out.
R😰
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haagr
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Hang in there Technology has advance so much over the years that there is very little danger of damage to the heart , lungs or of getting another cancer from radiation treatment.
A study by British researchers and colleagues has found that radiation for breast cancer does slightly increases a woman’s risk for heart problems. For example, for a 50-year-old woman with no pre-existing heart risk factors, a 3-gray dose of radiation would increase her risk of having a major heart event before age 80 by 0.9% (from 4.5% to 5.4%). If she had one or more pre-existing heart risk factors, a 3-gray dose of radiation would increase her risk of having a major heart event before age 80 by 1.7%. Very slim odds in my opinion
The same goes for getting another cancer:
In the study, researchers from the Johns Hopkins Kimmel Cancer Center looked at information from more than 20,000 women who had been treated for early-stage breast cancer at eight U.S. cancer centers between 1998 and 2007. The women’s recurrence rates and any additional cancer diagnoses were recorded in a database kept by the National Comprehensive Cancer Network (NCCN). The NCCN is an alliance of the world's leading cancer centers. These NCCN centers collaborate on research, guidelines, and education to improve the care of people diagnosed with cancer.
Most of women in the study had treatment after surgery:
about 25% had only radiation therapy
about 16% had only chemotherapy
about 46% had chemotherapy and radiation therapy
about 13% had neither chemotherapy nor radiation therapy
Of the women in the study, 50 developed some type of leukemia in the 10 years after radiation therapy, chemotherapy, or both treatments. This means the women had about a 0.5% risk of developing leukemia.
In earlier studies, which included only a few hundred women, the risk of developing leukemia after radiation and/or chemotherapy for early-stage breast cancer was 0.25%.
So my advice to you is stop worrying and enjoy being alive with the time that you have The is a much higher rate for women who have breast cancer being cancer-free and thus being able to enjoy their life
Thank you for your response. I've read many medical journals about this. But somehow I can't let my brain win over my emotions. I think I have put so much energy into researching doctors and heart sparing techniques that I detached from the emotional part and never really come to terms with having BC. Since my appointment yesterday I've been crying as much as I did when diagnosed. I look at the tatoos and get sick to my stomach. Not sure I can do any of this. Want to bury my head in the sand. It didn't help yesterday when I told the Rad Onc that I was not happy about RT and was frightened his response was "you can leave". Not an ounce of compassion or reassurance.
You know the choice is up to you If you are so unhappy with this option you can always take the "Wait and See" approach. But doing RT is really not that bad I had it 15.5 years ago for stage IIA breast cancer and have had no adverse latent effects from it. It is fatiguing and you can become skin can become sensitive but it can also give you a sense of reassurance that you have taken the necessary steps toward protecting yourself against having to do chemo later on. Please take time out from your unhappiness and enjoy the holidays. Open your heart up to some joy and share some good times with people that you love.
Trying to stay positive but finding it impossible. My head is in a very dark place. Barely sleeping. Crying all the time. Did get out yesterday put a smile on my face but lost it when I came home. Can't seem to move forward. Not even sure if I want to anymore. I think I've already given up.
Greetings: haagr/Sister/Warrior. First and foremost Merry Christmas,Happy Hanukkah,Happy Kwanzaa, and I pray for a Healthy,and Happy New year. The very first time in 2007, I saw my tattoos' on my breast and surrounding area I was truly , shocked and disturbed at the sight of them. My next thought was If this was one of the steps I have to take to fight to live or have a, better quality of life, then I have to put on my boxing gloves and fight as if my life depended on it. The radiation I had in 2007 caused a black burn mark on my breast, and a lighter dark mark the size of a grapefruit on my back, which means the radiation passed through a portion of my heart and lung. Suffice to say none of the dark areas are visible now. I am healthy and thriving and living a joy filled life.. Worry causes stress, and stress helps cancer to thrive in your body.There is no warrior in worriers. Count your many blessings, there are some people that did not wake up this morning and loved ones had to say goodbye. There are some people that are waking up in bodies that have painful physical challenges, and other people are waking up with mental challenges.Also remember and pray for the many children who are struggling with cancer diagnoses and are handling aggressive painful cancer treatments .Pray for God to give you strength.Keep positive people around you. Watch funny movies and shows.Have a spa day.Find a hobby you are passionate about. Think about the greatest moments in your life. I rarely have what one would call a bad day, but If I do I kick my behind into having a great day.Don't let anything or anyone steal your joy. Amen! ! !, Please do enjoy this holiday season.Kick your behind into it (S-M-I-L-E).God this phrase on 12-26-16 There is no warrior in worriers.
Thanks so much for taking the time to respond. I'm doing much better. Coming to terms with this and moving forward. RT appts are scheduled. I'm still uneasy but no longer in panic mode. Took up crocheting again this week. Went to the movies today. Going to try to get away for a night next week before starting RT. I have many blessings including the love and support of family, friends and the SHARE network.
I pray you will have a Healthy and Happy New Year Amen. I am so happy to see you are in good spirit, and no longer in worrier mode, but now your in Warrior mode (smile). I am going to start crocheting again myself.God bless you.
Hi Haagr, I actually think worry--in moderation--is a friend, though it may not feel like one at the time. It's a form of vigilance, a good thing. After all, it was vigilance that got you diagnosed at an early stage and vigilance that got you researching your options and proceeding with treatment. But it's important, as others have noted, not to let it rule your life by depriving you of the pleasures of survival. Glad to hear you're finding distractions! And good luck with radiation!
I'm so happy you're feeling more upbeat. Be sure to let the radiation staff know that you're feeling side effects already. There are many unguents and gels they can suggest. And they actually help!
Thanks for your response. I did discuss the sensations I had felt on day 1 with the RT staff. They said patients have reported this and not to be concerned. Today will be my 4th of 20 treatments. My skin is in tact without any color changes. I am using 3 products at different times a day to moisturize and prevent skin problems. Hopeful this plan will work.
Hi Haagr, I'm about to start radio and all I can think is how glad I am not to have needed chemo. compared with some ladies having chemo, the radio should be survivable. I understand you are a little worried, me too, but this will give us the best chance we have to move out from under our life WITH cancer to our life WITHOUT cancer. radio, although not ideal, had been around for a long time and has a proven track record. you are being brave and sensible and you will be fine. lots of people have been where you are now and are happy and healthy years later. I'm a wee bit nervous myself as I have to live away from home to get this done but I'm going to do it. well done for bringing your fears under control xxx
I completed the 1st of 4 weeks of RT without any problems. The anticipation of it was very stressful. But the treatment itself is nothing. Intellectually I know having RT was the right thing to do. I think part of my internal struggle was coming to term with the diagnosis of BC itself. I took a while but I'm ok and optimistic now. I too have been blessed by not needing chemo.
Sorry u have to be away from home for your treatments. How many do u need? Will any friends or family b with you? Will u b able to go home on weekends? When do u start?
Hi Haagr, no I'm going to be by myself, but I will get home to family at weekends. I too struggle with my diagnosis. two months ago the word cancer wasn't something I thought about. gave it no thought at all and then, suddenly wham! I've been stunned, shocked, fearful, grief stricken, anxious, confused, angry all in the last few weeks. It's like a sudden bereavement, a loss of my previous carefree life. I'm grateful for my treatment, and definitely grateful for not needing chemo. But other normal feelings like happy, contented, not feeling lonely, fulfilled, laughter, all the good things in life really, have not found their way back to me yet. there isn't a balance. at the moment everything feels alien. in time life will find us again, but just now we almost have to go with our fears - it's natural at this stage. I'll do my radio, I'll worry some more - especially at four o clock in the morning - and then, bit by hard won bit, I want my life back because if I don't aim for that, I might as well give up now, and that would be a waste of a decent prognosis. later in life, a few years from now, I could die from a heart attack, or a stroke. I could developer dementia or Parkinson's. I'm getting older and the only thing I am sure of is that good health won't be the cause of my demise. it will be one of the major illnesses, assuming I don't get run over by a bus! Lol. take heart Haagr and go forward because eventually you will be looking BACK on this and one morning, I pray, you will wake up and it isn't the first thing in your head. much love and hugs, jackie x
I believe u start RT today. Wishing you good luck and no side effects.
I'm halfway through. Doing ok. Minor skin changes. Moisturize to prevent skin problems! Radiation fatigue is very real. So make sure you eat, stay hydrated and rest when you can.
I'm here if you need me as well as many others on this site.
Hi glad to hear your 1st week went well and you are feeling more optimistic. Two things I found vary helpful during radiation were having vary soft cotton tee shirts and the use of 100% ure aloe to keep the heat down and heal the burns.
Hi robin, I've just completed three treatments and so far so good. I've not lost any energy - yet! And my skin is pink but looks okay. Being away from home, which I dreaded is actually bearable mainly because I've got visitors coming, classes at Maggie's and Facebook - all vital stuff. My breast nurse is going to question why I'm not to have tamoxifen - even though only a small chance it will improve the chance of non reinsurance, so I'll look forward to hearing what they say. I've been told I would be unlucky if it came back because they don't really expect it will because of the type of lump, but I think it warrants discussion/explanation. Fingers crossed, I shall moisturize and keep boob in soft cotton. Hope it doesn't get too bad...x
I was so happy to read your post and learn that you are doing well. How many treatments are you scheduled for?
I just completed my 3rd week and have just one more to go. The last 4 days are a boost into the cavity where the lesion was. My skin is in good shape. Hardly pink. Occasional itching on nipple. I am wearing my husband's cotton tee shirts and my bra over them. So soft cotton is the only thing that touches my breast. I am using aquaphor twice a day and Elocon,a prescription steroidtwice a day.
Keep in touch. I look forward to hearing about your progress.
Hi robin, I am one third through my treatment and the skin is fine. I'm having to be away from home but, you know what, it's actually okay. I get lots of day visitors and I'm going to a Michael Jackson tribute tomorrow night. I'm glad you are holding up okay too. One oncologist said I should take tamoxifen but the other said I didn't need it. To cut a long story short, although it will only help boost my chance of it not coming back by 2 per cent, I have asked to take it and they have agreed there is a benefit so I can have it if I want. At least if I have it I can see how it goes. My weepy episodes have almost disappeared. Although I get sad if im over tired. Beginning to cope though most of the time. How are you managing? Let me know. Take care, talk soon, jackie xxx
Sorry it took so long to respond. The radiation fatigue hit fairly hard last week, which was my finals week of RT. I was commuting 2 hrs each way for treatment and was exhausted and not able to do much else by the time I got home every day.
Friday was my final day to which I say amen and goodbye to this chapter of my life.
My skin has held up well. Minor skin color changes on my breast and itching only on my nipple. The itching is eased by a steroid cream. I have been warned about the cumulative effects of the treatments and that they peak 2 weeks after treatment ends. Yesterday I began to develop soreness at the boost site which is over the scar and next to my axilla. I also began feeling internal swelling in my axilla. I didn't expect that because my lymph nodes were not radiated. Today I can see do see redness, blotches and red dots where the boots were delivered. Nothing terrible though. My skin remains in tact with no peeling or open areas.
I will continue to use the steroid cream every 12 hours and aquaphor in between. So I apply something about every 6 hours. The breast care nurse told me to continue this for the next month and the use a very good moisturizer once or twice a day forever after that.
I too now have to decide if I will take an estrogen blocking medication. Although I am post menopause it will be of benefit for me as my receptors are 99% positive as the meds will reduce my risk of recurrence from 7 to 3 %. But the side effects are significant and I'm not sure that I am willing to risk the quality of my life for a 4% recurrence risk reduction. I will be discussing this with my medical oncologist in the coming weeks.
My weepy episodes are gone. Still dealing with the radiation fatigue. But I emotionally feel like myself again. I have emerged from my treatments positive and strong and am looking forward to living my happily ever after.
I understand that you wrote this 6 years ago, but it is almost exactly how I am feeling right now. I'm so glad you are still part of this online group.
It is very important for me to give back to those who supported me during my journey and to help other women along theirs. No one should have to go though this alone and no one understands better than someone who has experienced this themselves. One way I give back is by participating in this group I have also volunteered on a breast cancer helpline and facilitate a breast cancer support group.
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