Fear of radiation after lumpectomy

Posted by diane12 @diane12, Apr 19, 2018

I was seriously thinking of refusing radiation after lumpectomy because I had complete removal of tumor with wide negative margins. I was convinced that there would be no lung, rib, or heart radiation by using the prone(lying on stomach) with breast hanging down. They have been very careful with treatments & very accommodating so after 4 treatments I am feeling more secure by my decision to do this to ensure all cancer was caught.

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@shortie0650

Well, I really don't want to have any more deformities and that is a personal frailty that I know should not be high on the list. However, I know what it would do to my mental health which is already suffering from clinical depression and a low self esteem. The more important reason is that I am scared to death of having any more "side effects" that will limit what I can do or add to the existing problems that I have and make me hate being alive. I have osteoarthritis and am being tested for psoriatic arthritis; neuropathy in my right foot; a constant battle with insomnia, weight gain and depression; and have low energy. After three years of constant pain in my shoulders where I couldn't sleep from the pain, I couldn't do up my bra or my apron, couldn't wash my hair etc. etc. - I finally got treatment that healed them and am back to being able to move almost normally. The relief of this made a huge difference to my entire mental and physical well being. I have suffered with suicidal thoughts and had one attempt a number of years ago. Having looked at the side effects from both the radiation and the Tamoxifen which might bring back much of that and more, I am scared of myself not being able to cope with it. Right now, about 5 weeks after the partial mastectomy, I have some minor pain that I can tolerate, I have a nasty scar that I don't like but can tolerate, my breast is a bit smaller than the other one but mostly looks normal and I can tolerate that. So I am going about most of my regular life activities without too much trouble, but if I get to the point where I can't do regular daily life without a great deal of pain and lack of energy etc. I am worried I won't be able to stand it.

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I am dealing with a similar situation. I just had lumpectomy for Grade I invasive ductal carcinoma, ER/PR positive and HER-2 negative. Spot removed was only 0 .6 cm (smaller than pea size). Surgeon rec is radiation plus AI. I have suffered for my nearly my entire life with chronic fatigue, fibromyalgia, autoimmune thyroid, depression, irritable bowel syndrome, anxiety, vertigo, dizziness, swelling, severe allergies, etc. Three lymph nodes were removed and none of them tested positive. My BARC genetic test came back negative also. Surgery report says all margins are clean. I have struggled my entire life to overcome the overwhelming amount of symptoms I already have. In addition, my father died of leukemia and also my cousin on his side. My cousin on my mom's side has lupus and thyroid issues as does the entire side of mom's family. My aunt had lung cancer. With my history, I do not want to risk making my already awful quality of life even worse. So I am waiting on my Oncotype results. I too have read horrible things about AI and radiation. Radiation can bring on leukemia and lung cancer later on. I've had to cut back on work already due to my existing issues, so I can't afford to quit. I need to still work to pay bills. So far, I have not found that the benefits of radiation or AI's outweigh the risks or decreased quality of life. Unless there is some indication that you are at higher risk of recurrence. I'd like to see some studies on this topic but haven't found much out there yet. Has anyone out there found any studies on this?

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Sorry tried to delete not post above. It was going to say that everyone's personal preference list is legitimate for that person. We have to live our lives, in and around and despite, health conditions and treatments and cannot even hope for perfect decisions, just those that seem the most right.

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@shortie0650

Well, I really don't want to have any more deformities and that is a personal frailty that I know should not be high on the list. However, I know what it would do to my mental health which is already suffering from clinical depression and a low self esteem. The more important reason is that I am scared to death of having any more "side effects" that will limit what I can do or add to the existing problems that I have and make me hate being alive. I have osteoarthritis and am being tested for psoriatic arthritis; neuropathy in my right foot; a constant battle with insomnia, weight gain and depression; and have low energy. After three years of constant pain in my shoulders where I couldn't sleep from the pain, I couldn't do up my bra or my apron, couldn't wash my hair etc. etc. - I finally got treatment that healed them and am back to being able to move almost normally. The relief of this made a huge difference to my entire mental and physical well being. I have suffered with suicidal thoughts and had one attempt a number of years ago. Having looked at the side effects from both the radiation and the Tamoxifen which might bring back much of that and more, I am scared of myself not being able to cope with it. Right now, about 5 weeks after the partial mastectomy, I have some minor pain that I can tolerate, I have a nasty scar that I don't like but can tolerate, my breast is a bit smaller than the other one but mostly looks normal and I can tolerate that. So I am going about most of my regular life activities without too much trouble, but if I get to the point where I can't do regular daily life without a great deal of pain and lack of energy etc. I am worried I won't be able to stand it.

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I think everyone's preference list is l

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@raebaby

Turkey tail mushroom is prescribed to all cancer victims in Japan. I got some on Amazon. Unfortunately it gave me diarrhea.
I have mentioned here before that i was left with some neuropathy from the chemo, but I had no problems, except losing my hair ,and no problems with 30 sessions of radiation, just this year. I am 80. I decided not to take Tamoxifen because i had an awful menopause with no estrogen in my system, I had a lumpectomy and two lymph nodes removed.

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The Fungi Perfecti series with renowned mycologist Paul Stamets on Netflix was fascinating to watch the other night. The truth is that nature holds legions of answers to so many conditions we face. It's just a matter of time and money spent on looking for them. And keeping the knowledge freely available in the public domain and not owned by corporations and hedge funds like some genetics codes!

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@auntieoakley

Be sure to ask him about deformities due to location, depth and size of your scar.. I can only tell you that my scar from surgeries is a bit deforming but that is partially due to the scars that I build, any cut or surgery builds weird, angry scars for me. I like to think of them as the visible memories of my life.
I would also encourage you to talk to your doctor frankly about your body image and the depression, if this doctor cannot recommend help, ask them to send you to someone who can. There are ways to reconstruct after breast surgery if there are deformities, and honestly I don’t think any of us gets through the treatments without some depression. Even those who have never had depression can struggle mightily with breast cancer, better living through chemistry (antidepressants) aren’t always a bad thing, you are going through a lot.
Do you have a list of questions ready for your appointment?

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The actress Elizabeth Taylor refused to cover-up her tracheotomy scar for movie shoots. She called it her badge of courage and a reminder of personal strength. And a reminder to other women of theirs. And that human strength is the only example of real beauty in her eyes. I like the notion while fully endorsing anything that helps any of us move forward more comfortably.

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I should add my left breast, nodes were also radiated. Lots of radiation.....yuk.

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I agree with others here, you MUST do research, learn and ask questions. I just finished 3 weeks proton beam radiation, and I feel really, really great. My neck, collarbone was radiated. I feel quite well. I have LVI Lympovascular Invasion and decided that radiation and an inhibitor along wtih a plant based diet, exercise, faith and positive relationships and outlook are my best defense against a reccurence. It's hard but
God is with us.

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My husband died right before my cancer was found. We had been married 58 years, the last 10 as his caregiver. What with everything that has gone down, I still thought I was happy, then I finally realized I was very anxious. My oncologist upped my dose of Citalopram from 10 to 20 mg. and what a difference! Now I can let things slide.

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@shortie0650

Thank you for the information. My mom died of breast cancer. She had a lumpectomy followed by a long course of radiation and 6 1/2 years of Tamoxifen. The side effects from these two treatments destroyed her quality of life and she got a recurrence despite following the full regime of treatments her Dr.'s prescribed. I know that if I refuse the treatments, my family will be super upset, but I don't think I'm willing to have my quality of life destroyed as my mom's was for the time I have left! 🙁 I have not yet seen the radiation oncologist or a regular oncologist - only the surgeon, so we'll see what's up after I meet with them. Has anyone out there ever tried the supplement Artemisinin (Sweet Wormwood)?? It is supposed to "dramatically kill breast cancer and leukemia cells while leaving normal breast cells and white blood cells unscathed. It has very few and mild side effects, but I can't find any testimonies of anyone who has actually taken it.

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Turkey tail mushroom is prescribed to all cancer victims in Japan. I got some on Amazon. Unfortunately it gave me diarrhea.
I have mentioned here before that i was left with some neuropathy from the chemo, but I had no problems, except losing my hair ,and no problems with 30 sessions of radiation, just this year. I am 80. I decided not to take Tamoxifen because i had an awful menopause with no estrogen in my system, I had a lumpectomy and two lymph nodes removed.

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Be sure to ask him about deformities due to location, depth and size of your scar.. I can only tell you that my scar from surgeries is a bit deforming but that is partially due to the scars that I build, any cut or surgery builds weird, angry scars for me. I like to think of them as the visible memories of my life.
I would also encourage you to talk to your doctor frankly about your body image and the depression, if this doctor cannot recommend help, ask them to send you to someone who can. There are ways to reconstruct after breast surgery if there are deformities, and honestly I don’t think any of us gets through the treatments without some depression. Even those who have never had depression can struggle mightily with breast cancer, better living through chemistry (antidepressants) aren’t always a bad thing, you are going through a lot.
Do you have a list of questions ready for your appointment?

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