Why did you refuse Radiation?
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I was DX. with breast cancer Stage llB, in April this year, surgery in July, Chemo started after...
I am recieving chemo to rid of any cancer cells that may have not been removed by surgery.
I had three areas of cancer in my right inner breast. 4cm, 2 cm and 0.5 cm.
I was told all three sites had at least .5 cm margin - all cancer was removed. Also had two lymph nodes positive of 7 taken.
I refused radiation. The reason to me was simple. The surgery got all the cancer, and both breast removed.
I could not understand radiation treatment to an area free of cancer . The side effects was not worth, (to me)- the disfigeration of rough leather skin, skin color changes, the burns, the increase in getting another cancer from the raditation years down the road. Why would I have reconstruction surgery, then allow radiation to destroy the breast area just to further treat something that may not even be there. It is ALL preventive, Incase a cell or two of cancer got past surgery and chemo.
What most made my decision was that it is only to help reduce the chances of return of cancer in the breast. Only the area they radiate. I have no breast tissue. So, I declined radiation.
I hope you do well - and make your own decision on what YOU think is best for YOU. - Positive energy.
Good luck, stay girl strong !
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Itseems that cancer returns more aggressive when you get radiation! I just have lumpectomy but too tired, and weather here too bad to go every day to hospital for radiation......I am 80, wonder tho if I am risking return. Please help me decide what to do. Holistic? What are they? Tumor 2cm they said it was good kind!! Her negative. Prescribed arimidex.
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CCtoo - there has been some recent discussion of whether radiation really benefits women over the age of 65. I don't know your particular circumstances, but you may want to raise this question with your medical team.
I've attached one article for your information and I hope it is helpful. There have been other studies and more recent reports but I'm not able to find them right now.
You may want to keep in mind that AIs (aromatase inhibitors) are very, very effective in hormone positive cancers. You might do quite well simply taking an AI or even tamoxifen. Again, this is a question to raise with your medical team. Don't hesitate to push for answers that address YOU as an individual and answer your own questions.
I wish you the best as you recover from your lumpectomy and make these decisions.
http://news.cancerconnect.com/older-patients-with-early-breast-cancer-may-avoid-radiation/
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Hopeful, thank you for that link. I am encouraged after my use of anastrozole and exemestane I feel pretty well protected. My onco goes to San Antonio all the time but never says much about new findings. I was looking for the link that suggested AI drugs vs tamoxifen showed no significant difference in er+, pr+ patients but for er+, pr- patients there was a significant difference showing AI more effective.
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Meow, I'm not familiar with that study. Everything I've read shows AIs as more effective than Tamox. for post-men. women. I'll be interested to read it, if you can ever find it. I know how challenging it can be to dredge up some of those studies, no matter how recent!
I did radiation and have no regrets but if I were in the position of someone such as CCtoo I might give serious consideration to giving it a pass, particularly if there was only minimal projected benefit.
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I am still looking I don't believe it was a study conclusion but what is it appears so far. Problem is so many are er and pr positive compared to er+ and pr-. They dont have as much info for us.
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That's an interesting study, Meow. I think it's important to keep in mind that all hormone receptor positives responded better to the AI than to tamox. - but ER+/PR- saw the greatest improvement in response. Thus, it's not that tamox. is equivalent just that one sub-group sees greater benefit from AIs. I could be wrong, but I seem to recall more recent studies showing that all the AIs beat out Tamox., with Femara doing the best (by a fraction of a percent). And, of course, you're right that there's not nearly as much data available for ER+PR- types.
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Hopeful,...Thank you for your reply..Article was very helpful. I had one, sentinel node positive with minute amount surgeon said mOncotype score was 9..Low said medical oncologist.
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I too am concerned about radiation, due to my age (32) and that my lump was very close to my chest wall in my left breast. So I worry about damage to my heart and lungs. And the risk of a secondary cancer on down the line. I wonder how much the benefits would outweigh the risks.
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Hi
Not sure if my post belongs here. I recently had a lumpectomy. Very small tumor, clean margins, neg sentinel gland, stage 1, est-pos, prog pos, her-neg. Overall very good prognosis. Consults with RO and MO. RO suggests radiation, MO suggest hormone therapy, as best treatment if I am choosing just one. One MO said the choice was up to me due to my age and pathology. I am struggling with what treatment to choose. Seems standard of care is both therapies. Truthfully, I am afraid of both and contemplating doing neither and trying an anti- estrogen diet and supplements in place of hormones. My big concern with radiation is if there is a reoccurrence and radiation can only be done once, then a mastectomy would be recommended. If I choose to not do radiation and reoccurrence occurs, then reconstruction could be done after mastectomy. Otherwise, I lose my option for reconstruction. I need to give RO an answer very soon. If I forego radiation for hormones ( fear of side effects) and hormones don't work out, it will be too late for radiation. If I sound crazy, that's because I'm going quickly. I have no one to help me make a decision and I'm so confused as to what follow up therapy, if any, would be best for me. Between the two specialists, I'm having a difficult time deciphering what my risk assessment will be as opposed to just being dictated general survival guides of standard care. Sorry for rambling.
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hopeful....Thank you so much for that study...Also has anyone had bad effects from Arimidex? I am afraid to take that too. I read Suzanne Somers Breakthrough....One chapter explains why we need estrogen with or after breast cancer. The Dr. was oncologist...Hecwrote book Keeping abreast..Ways to prevent breast cancer Dr.Khalid Mahmud.
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I still have some side effects from anastrozole but I have been NED for 5 years. If that is what helped kill off any residue I think it was worth it.
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CC, if you search either anastrozole or arimidex threads, lots of SE's. Only average 3% absolute risk reduction.
Read the UCLA study on radiation therapy and breast cancer stem cell growth from rads. There are threads here on BCO.
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Hi FightingtheFight,
Did you end up going with radiation? Did your report showed anything about lymph nodes or LVI?0 -
I am HER2+ and take herceptin so I have to go for periodic echo cardiograms. At my last one, I asked the tech if she sees a lot of cancer patients. She said that she see lots of cancer survivors who have heart problems now due to the radiation they had many years ago. I told her that I'm trying to avoid radiation and her response was a firm, "that's good". My next echo is this Thursday -- I'm going to ask more questions this time.
One reason I'm having a mastectomy instead of a lumpectomy is to avoid radiation. When I have surgery next month, they may find something that would require radiation. If that happens then I probably won't refuse it. But I am trying to avoid it.
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Regarding the tech who reports seeing lots of cancer patients who had radiation years ago - it's really important to be aware of how much more closely targeted and controlled radiation treatment is today than it was even five or ten years ago. I have no doubt that earlier treatment accounts for numerous current cancers, and that some of today's treatments may do so, but the risk is much, much smaller than it used to be.
I totally get the fear of radiation and concerns about doing it. However, I also think it's important to rely on up to date information. Good luck, whatever you decide.
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please do keep in mind that there is a danger of future heart problems from radiation, particularly if it is left sided. I am having open heart surgery in 2 weeks to repair my mitral valve. The surgeon said he is pretty certain it was caused by my radiation ( 7 years ago). I go to a valve support group & there are several women, cancer survivors, awaiting surgery like me. It more commonly causes heart failure, & has been linked to heart rhythm problems too. If I were doing it again, I would see a cardiologist before & during.
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I have left sided cancer and my choice is lumpectomy plus radiation versus mastectomy without radiation My lump was in the inner upper part of my breast --just over my aortic valve. I am relatively young ( 44 y/O ) and am terrified of developing heart problems due to the radiation. The radiation doctors all talk about modern technique --but no matter how modern the technique there will be some exposure of other internal organs to the radiation
Women with left sided cancers need to think long and hard about radiation . Amanda 6 thank you for sharing your experience. In your situation with positive nodes, you did what you needed to do for cure --you did the right thing! No looking back! Cardiology has come a long way and I am sure you will do great after you have your valve repair ---wish you all the very best . I did speak to a cardiologist before making my decision --he said the immediate goal should always be cure from the breast cancer and if radiation is essential for cure, he would support it. The radiation that people with lymphoma in the chest for example receive is higher than breast cancer and the cardiologists just deal with it . Cardiologists have come a long way with non invasive valve procedures doign these procedures without open heart surgery .
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I too am struggling with the idea of radiation. My RO left the decision up to me since I don't meet the "essential" criterias - but have few of the risk factors (young age 31y.o., LVI, larger size tumor 4.4cm, close margins, but negative nodes).
I've been reading about side effects of radiation - damage to lungs/ secondary lung cancer, and now from amanda6 - the potential heart damage. The RO did emphasize that with modern technology - the side effects are minimized but there's always a slight risk (like with every treatment i've been told throughout this journey) - so yes, from that aspect, I'm fearful of getting radiation.
But at the same time - if I don't do it, there's the fear of me wondering if I gave it my all. I do hear that most young women tend to have more aggressive type of cancer - so there's always the fear of recurrence. Since I will be having double mastectomy - there will be no way to screen through imaging but only clinical assessment. My biggest fear is if it does come back, that it'll usually be harder to treat but likely might be later stages - which may possibly lead to distant cancer.Did you ladies go for cardio consult before starting radiation? - my RO didnt seem too concern because of my young age, and that 'everything should be fine'.
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My surgeon and tumor board pushed a mastectomy so I did it. They said no radiation required. I had no evidence of cancer other than the 2 tumors no lymph node involvement. But I must say I am very leery of radiation and the damage it could cause. I would be more open to targeted internal radiation. Are you a candidate for that kind of radiation? I think it is safer but could be wrong.
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Hi, I am diagnosed with tubular carcinoma on July 6th 2017, Had a sugery and it was found 1.5 cm Cancer lump was removed with margin of 2 cm each side. Post surgery Histopathology report confirmed that cut margins are free of cancer. It shows ER/PR + and HER negative , Ki-67 is 20% which is good news. No carcinoma in any Lymph node.
Oncologist suggests going for Radiation and Medicines. My question is that if Tubulor carcinoma is not going to come back from what I found from Internet, it is completely removed from my body, Histopathology report says Intraductal carcinoma is not seen , do I need radiation? Please send me your reply to my email (rakeshsingh012345@gmail.com) or on this board. I appreciate for any suggestion regarding treatment. I don't want to take radiation or medicines. What are risks?
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Hi,
I had gone through Lumpectomy, IDC, 1.6 Cm. 2 lymph nodes clear, HR+, ER+, HER2-. No detected hereditary genes. margins clear after surgery. I don't want to do radiation due to side effects and I thought to post this and ask anyone who opted out and still good after several years. Please help me make a decision. Thank you
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By the time I was ready for rads, I asked my RO about possible damage. He said they could stop the beam before it got to my heart. I asked about scatter. He said minimal. 5 years later, I’m ok.
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I declined radiation in 2012, I did chemo and opted for BMX after chemo in 2013. I consulted 3 RO's, my breast surgeon and my medical oncologist. All agreed that the benefit would be about 5% reduction in local recurrence but no impact on overall survival. After chemo when I had my BMX the pathology on both breasts and lymph nodes was negative for any cancer cells so that reinforced my decision not to do radiation. If I have dormant breast cancer stem cells they may cause recurrence at any time but the radiation would not prevent that from happening so the side effects were not worth it for me. It's been 5 years since my diagnosis and lumpectomy, still taking Tamoxifen. All we can do is weigh the facts, get advice from those we trust and make our treatment decisions but don't look back and second guess yourself. Good luck in your decision (((hugs))) Maureen
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No2Can...you may also want to look at this thread for more information on radiation side effects that seem to be linked to mets:
https://community.breastcancer.org/forum/70/topics/859024?page=1#idx_6
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There are no right or wrong answers because whatever you decide it’s your call and your life. I agree whatever you ultimately decide to do don’t look back.
I did do radiation. 33 treatments in all. I had Stage 1b, IDC, Grade 1. I had a lumpectomy and took Tamoxifen for 5 years. I was 6 years out last August. My Oncotype score was 11 which enabled me to dodge chemo.
I knew what the possible side effects were then and long term but I wanted to do whatever it took and frankly I was afraid not to do it.
It’s a crap shoot to be sure. Good luck whatever you decide.
Diane
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Maureen, I am glad you are free after almost 5 years. However, I wonder if there are anybody else who refused it and still c-free after longer period of time. The question is even if the recurrence rate is 5%, how do we know if we are within that 5% so we skip the risk of doing or not doing the radiation.
Is any test helpful such as PET Scan, Thermogram, or any other way. If you have a recurrence, you always have a chance to do surgery and rad after. But not possible if you have already done rad. Any comments?
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We don’t know and we won’t know if we fall into that percentile. Unfortunately cancer does not discriminate. How many of us did/didn’t fit into the select group who were more likely or not to get cancer in the first place. You will drive yourself crazy trying to get a 100% guarantee either way.
People can make arguments for both sides but again it comes down to what you decide is best for you regardless.
I have a friend whose doctor (coincidentally the same one I have) insisted she have the treatment he recommended. She refused and decided on another treatment plan. Btw she is10 years out.
I feel encouraged my chance of recurrence is 8% but I also know it’s not a certainty.
Diane
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PET scans cannot predict or determine if one might have a recurrance. Thermograms are, to the best of my knowledge, not used in conventional medicine and there is little evidence to support their usefulness as a diagnostic tool at all. All the best to you
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