anyone out there who opted out of radiation?
hi there ~ looking for anyone or anyone that knows someone that opted out of getting radiation therapy? I'm 42 and was recently diagnosed with idc, my lumpectomy is scheduled for 5/11/11. Last week I posted a form of this question on the 'just diagnosed' forum - and am very thankful and appreciative of the responses that i received. But i guess what i am really looking for is to hear from someone who was told by the doctor/oncologist/etc. to have radiation therapy, but opted out for personal/health/after effects/etc. reasons. I know so many have had success with it and feel that with it they are protected from reoccurences (maybe?), but i also know of a few that either refused or would never do it again. It's just a question that i am going to have to come up with an answer to sooner or later and right now i am so undecided - HELP!
Comments
-
I am opting out... but I am also not just opting out and leaving it at that... I am opting to have MX instead. I think the recurrance issue is too big to opt out without an alternative solution.
-
I refused radiation after lumpectomy over 7 years ago when I was 49 and have not had a recurrence thus far. I'm a smoker, so radiation would have considerably increased my chance of developing lung cancer in whatever small area of the lung it would have hit. Since my cancer was medially located in the left breast, I had a lot of concerns about the possibility of worsening a pre-existing heart valve problem as well as the increased risk of future heart attacks secondary to radiation induced coronary artery disease. I just couldn't see the sense in allowing radiation and taking on the associated risks for a small, low grade cancer that was most likely cured by the surgery alone. I also refused tamoxifen and arimidex, so all I had was that lumpectomy.
-
I turned down radiation, but I'm 75 so the chances of a recurrence are much smaller. My RO said it was up to me so after hearing about lung scarring (although only 6 to 10 percent of the lung) possible rib fracture (although the RO had never personally had a case of that, but it CAN happen) I decided to skip it. My tumor was on the left side so I was also worried about my heart (part of which would be irradiated) and the possible bone problems (I have osteoporosis)
I will be starting Aromasin soon as per the advice of the RO.
-
Maybe I could have really pushed it, but bs (who is also the chair of the breast cancer center) only gave me 2 options: lump. with rads or mx. I chose the former. Like you, I'm in my 40s and also had some idc --> am really doubting that you are going to find anyone who had lump. without rads at our age . . . unless they have some other overriding medical restriction like an earlier poster (although I too had bc on the left side and to minimize impact to heart, I had rads in the prone position, am very happy that I had that option). If you don't want rads for whatever reason, you should have a mx, but that was just not something I preferred.
-
Looks like I'll be opting, as well. I have the choice of not doing radiation IF I do the hormonal therapy. I'd be willing to do partial but THAT'S IT!!
I base this on:
http://www.livestrong.com/article/120097-options-instead-radiation-breast-cancer/
which, in part, states:
"Tamoxifen therapy is a good alternative to radiation therapy for the treatment of breast cancers that are responsive to estrogen"
Bear in mind I made this decision also because I have a a favorable histologic subtype called tubular. BUT until I get my results for the Oncotype test, I am NOT going to rule out that I may get a big disappointment with the results and have to change my mind--again!
-
I am opting out. I will have completed 6 rounds of TCH on July 29th and I WILL be done. I will continue with Herceptin for the remainder of the year. I had a lumpectomy on a very small tumor with no other invasive issues. No lymph nodes affected nothing in the centinal node and nothing found in the marginal tissues removed. I too have heard too many horror stories from unnecessary radiation. I was originally told that this was a systemic and aggressive type that could only be treated with chemotheraphy so I don't see a benefit to adding radiation therapy to the mix. I am 61 years old.
-
I always encourage those who don't like the idea of radiation to consider Intraoperative Radiation Therapy (IORT). It's a one-dose radiation administered DURING surgery. There are no associated skin problems and since the radiation is delivered right to the tumor bed itself the effectiveness of the single dose is greatly improved.
The downsides are that not everyone is an eligible patient due to age and disease characteristics, and it's not available everywhere. But since it's much more convenient and has so many fewer SEs, it's worth checking out and even travelling some distance to have it. Here's some info about IORT.
-
I had a lumpectomy last week. My oncologist told me today that if I did nothing, just walked away today, the chance of it coming back in 10 years was 20%. Radiation and homone therapy would cut that down to 7.5-10%. I would do anything to stick around for my daughter, so I'm also doing the oncotype test, no one seems to feel that chemo needed and the test will likey show that, but I want to be sure.
I am also hoping that with each year, better and gentler treatments are found, so that if it does return, medicine will have progressed.
Can you ask your doctor how many percentage points radiation would be expected to improve your situation? Having hard numbers, even though they vary within a group can make your decision easier.
-
I'm now looking into the posssibility of opting out of radiation. I've had many people say that if they had a choice they would have opted out considering the trouble it has caused with other organs and health. I'm currently on 4 rounds of TC and will do the tamoxifen and wonder what the benefits will be for me to do the radiation with these other treatments.
-
Dexxy, on the hormonal therapy thread, someone recently posted a link to the CancerMath site. http://www.lifemath.net/cancer/breastcancer/therapy/index.php
You might find it useful.
-
Here are some stats - the general spill is that 30% of people will have a local recurrence. What this means, is that on the flip side, 70% of people or 7 in 10 people do NOT have a recurrence without ANY treatment/radiation at all, and this is seldom explained clearly to patients. What this means is 70% or 7 out of 10 people are being OVERTREATED. Many Drs do not tell you this fact.
When using programs to calculate your risk of relapse, it can in fact be lower than 30%; mine was calculated at 25%.
Consider other features of your tumour when making your decision, such as the grade and size, and whether ER/PR+ or HER2+. If you have a small, low grade tumour which is hormone receptor positive and wide clear margins, these would be more favourable factors in making a decision to decline radiation. There are trials looking at DCIS to study if a margin is 1cm or > clear of the tumour, whether radiation is really required.
If you meet this criteria and opt out of radiation, perhaps what you can do is to have regular MRI's to check for recurrence, so that if it does happen, you can catch it early and have it treated. I am not sure of the frequency of MRI's used in the trials - it could be 3 or 6 monthly.
On the other hand, 30% is quite a high risk to ignore, so you need to bear that in mind; although I believe that the 30% relapse rate combines all types of tumours including both low & high grade.
If you had a small tumour, and it recurs, you can still have a lumpectomy or mastectomy and go into a remission again; so if you are not keen on radiation and are not an overly anxious type of person, why not enjoy your life without opening yourself to the risks of radiation, which also ironically includes developing a secondary cancer ie a sarcoma which is a more aggressive form of cancer as compared to your current carcinoma and leukemia as well? There is a 70% chance that your cancer was fully removed with no stray cells in your body and hence will never recur? If it were to recur, it is still highly treatable. If you choose to opt out, just be more vigilant about surveillance for recurrence.
Even if your cancer does not fall into the low risk features described, you can still opt out and there would still be a chance that surgery alone removed all the cancer, except that you would be at a higher risk for recurrence as compared to someone with a less aggressive cancer.
Good Luck and I hope this helps you and anyone else considering opting out of radiation. Please look at facts and figures to guide your decision, rather than fears that concerned but uninformed people around you will cite.
-
Hi Dexxy, Just curious why you did chemo, when your tumour was so small and since you are node negative, which suggests that your cancer has not spread through your body? Interestingly too, your cancer is of an intermediate grade and hormone receptor positive which is the least aggressive form of BC.
Chemo has a lot more long term toxic side effects as compared to radiation; most say rads is a walk in the park as compared with chemo. Most side effects of rads will reverse after treatment is complete. How did you find chemo? Were you lucky and did not suffer much?
Chemo is generally aimed at treating for distant recurrence. Did your oncologists explain this to you? Or is it because you had a bad time with chemo, you are now considering opting out of rads?
More commonly, I have heard of people opting out of chemo due to the severe toxicities it brings as compared to radiation and so am interested to hear from you.
Praise to you though, for your courage in having chemo. Many Blessings!
-
Courage,
dexxy's post is from 2 years ago. I believe that she still posts on the board but she doesn't have DCIS and I don't think I've seen her in the DCIS forum in a couple of years. If you do a search on her name, you might find where she's posting and ask your question.
-
I am in the gray area according to my radiologist. I am not sure about doing radiation. Some times I really do wonder how much we really have to do. Is the radiologist just saying yes I should do it to get money.....does the benefit out weigh the other risks? The Dr who did my mastectomy didn't really have an opinion and my plastic surgeon says I should do radiation just to be sure. He said he has seen too many that have had recurrence and I should do all I can. I see my oncologist on Tuesday and will talk to him as well. I really feel that the chemo should have taken care of any residual cancer cells that may have been there, isn't that why I went through chemo? I am starting my reconstructive surgery later this month.....once my oncologist says my immune system can handle it after last chemo treatment last Friday, so I have some time to decide.
-
Hi Teresa, I am in the gray zone as well. I had DCIS with no lymph node involvement in 2009 and opted for a bi-lateral mascetomy. I was told that i had a 99% chance of being cured. In Jan of this year I found a new tumor in the exact same place as the first tumor - it was stage IIb. I had surgery to remove lump and 1 lymph node and 6 months of chemo (cytoxan, adriamyacin, taxol, herceptin). I will be on herceptin until next April. I was told from the beginning that I would not need radiation. But then after the hard part of chemo was done, my onc suggested I talk to a radiologist. There is not a whole lot of data out there for women in my situation.
When I went in for a consultation, the nurse and Dr just assumed that I was taking radiation and started asking me to fill out all this paperwork. Whoa!!! In my mind, I was DONE. After speaking with the Radiologist, I was scared out of my head. She said this would help prevent another reoccurence. Well, of course I want to limit my risk of reoccurence to as low as possible so I caved under the pressure.
But, I continue to struggle with this decision. The more I think and pray about it, the more I realize that radiation just doesn't feel like the right thing for me. My cure % is about 85-87% with surgery and chemo. The Radiologist said she didn't have good numbers to tell me on %s but that radiation would boost my cure % to about 90. The cancer was on the left side so I am looking at some heart damage, lung damage. Herceptin and the other chemo drugs also impact the heart. So they would have to suspend the herceptin until radiation is complete.
I am 41, have a 5 yr old son, and I run my own company. Getting diagnosed with BC was a shock but having it come back was crushing. I decided that I must be doing something to encourage cancer in my body. I read a lot of books, watched documentaries, journaled, prayed. My new thinking is that you have to treat your terrain. Is your body hospitable or inhospitable to cancer? I have completely changed my diet, my attitude, work life balance, and exercise habits. I want to give my body the tools to protect itself.
I did decide to opt-out of radiation. A Dr. friend of mine said not to take anti-oxidents during therapy because these can make the treatment less effective - the idea is to oxidize the cells. This was the final piece that pushed me over to opting out. I juice fresh vegetables and make kale smoothies everyday. Everything I eat now is an antioxident. This activity makes more sense to me than radiation right now. BUT, my oncologist just wrote me and said I was making a mistake by refusing rad.
It is so hard to make rational decisions when you are afraid of mortality, your family's future, your quality of life, what the insurance company might say. I was shocked as hell when my onc told me that 6 months of brutal chemo only boosted my cure rate 5-6%. That's IT??? Really?
It would be nice to have better information and better treatment options. You just have to make the best decision you can based on what is available now.
-
Ask your MO/RO what happens if you dont have rads NOW and get a local recurrance later. The answer will be that you could then treat it with rads.
If you dont have rads now and you dont recur, then youll never need them at all.
If you "use up" your rads option now you wont have it as an option later. Its a one off option.
And you are right. Its your decision. There is no one right decision and definitely no wrong decision. Your MO is bullying you...
Jenn -
I opted out. My gut said "nope." I followed it.
-
I had ILC stage 2B. I did four rounds of chemo, Cytoxan and Taxotere. I will also be doing Tamoxifen for homonal replacement therapy. The radiologist told me five weeks of rads five times per week. To be honest I really just didn't like her. My Oncologist when I saw him on Tuesday thinks I should do rads but also thinks I would be good with three weeks of treatment. I have an appointment on Tuesday with a different radiologist for a 2nd opinion. Plus I get my tissue expander on Thursday.
-
Teresa G~ I was in your shoes just last week. Don't you just love how we are supposed to make these life and death decisions with NO medical degree. Crazy! I also, didn't care for the RO I had the consult with...the trust just wasn't there. I was told that they would "nick" my heart (I am a lefty) Yikes! came home and got a second opinion from an RO in Florida. Loved her, and she assured me that they would NOT "nick" my heart. They do a hold your breath technique. I sure wasn't crazy about trading this beast for another life or death problem. Geesh! Thank goodness I have a winter home 15 minutes from her facility! Needless to say...Rads are in and I leave in the morning for sunny Florida!
I wanted the Canadian 3 week rads, too. Just not a good candidate for it.
None of these decisions are easy, but we have to do what we feel comofortable with. At the very least, choose an RO that we actually like. Good luck with the expander and new consult on Tuesday.
-
Teresa G~ I was in your shoes just last week. Don't you just love how we are supposed to make these life and death decisions with NO medical degree. Crazy! I also, didn't care for the RO I had the consult with...the trust just wasn't there. I was told that they would "nick" my heart. Yikes! I came home and got a second opinion from an RO in Florida. Loved her, and she assured me that they would NOT "nick" my heart. They do a hold your breath technique. I sure wasn't crazy about trading this beast for another life or death problem. Geesh! Thank goodness I have a winter home 15 minutes from her facility! Needless to say...Rads are in and I leave in the morning for sunny Florida!
I wanted the Canadian 3 week rads, too. Just not a good candidate for it.
None of these decisions are easy, but we have to do what we feel comofortable with. At the very least, choose an RO that we actually like. Good luck with the expander and new consult on Tuesday.
-
Paddle, I have my first appointment with RO tomorrow. I have only seen information about him and saw his video about "radiation" therapy via the web and already am not having good vibes. I live in Palm Beach and would like to know who your female RO is please?
Hugs from a newly diagnosed,
Teena -
I opted out of radiation also.
-
Hi Casey,
I completely understand where you're coming from. I am 46 with a 5 year old daughter, and I want to boost my chances as much as possible since I have Stage 3 BC, but the radiation issue is weighing heavy on my mind. Being a chiropractor, I do a lot of continuing ed about nutrition and supplements, and I have a very hard time conforming to grueling treatments unless they really make sense in terms of survival advantage. Good luck with your decision.
-
I opted out of radiation as well. I talked with the BS about doing MX instead, and she told me she didn't think the MX would reduce my chances of recurrence anyway, but I think she was wrong. I did have recurrence, but my case has been complicated from the beginning. If I had a do-over, I would still opt out of radiation, but would go with BMX. Initially I was just not prepared for a MX, had lumpectomy, chemo, and started tamoxifen (which I stopped because I couldn't tolerate the SEs). I thought long and hard, then prepared myself better psychologically and asked about the MX and was told it wouldn't make any difference, chances of recurrence were low even without rads. I was offered rads after recurrence, and still am opting out.
-
Hi Teena226~ Sorry, I just got back on the boards after arriving, unpacking, cleaning, and getting on the proverbial "Barbie"conveyor belt. Met my RO, Dr. Candace Correa @ Moffitt, in Tampa, on Thursday. She is wonderful! As is her whole team. Had the consult @ 11am and the simulation @ 2pm. Not sure how your face to face went with your RO...fingers crossed that you liked him. If not, you can get on Moffitt's website and read about Dr. Correa. I e-mailed her...she got back to me in less than an hour! She did a summer residency at Sloan-Kettering, hey, I was impressed. She also wrote a paper, along with some colleagues, about left breast cancer patients. It is on the website too. I wish you the best with the choices you are facing...it isn't easy for any of us.
(((Gentle Hugs))) Paddle
-
Hi~
I too am about to have my surgery and was given the option of IORT during my surgery/breast reconstruction surgery...but right now I'm not sure if I want any form of radiation at all. I was hoping to hear from others that had IORT so I could get a better idea of how they managed and if there were side effects. Even though it's only a 1 dose application it's still radiation and I think I'm leaning towards opting out...and wait for my final Pathology Report and send it out to Dr. Lagios to see what the VNPI score shows. Plans to follow a healthier lifestyle and alternative medicines is the route I hope to go and being carefully monitored for DCIS screening too. But I've been changing my mind daily so will pray about it and whatever I have peace of mind about is the choice I make. But any other input will be helpful. Thank you!
Stage 0 DCIS Grade size 5mm Intermediate with focal necrosis ER+ PR+
-
There is also the test (it is really expensive but I insurance will cover some of it) called the Oncotype DX. The test is done on the primary breast cancer tumor and provides a "score" which serves to predict the probability of cancer recurring. Mine came back so low that I am not doing chemo, rads, OR drugs. I have had enough of all of this to last the rest of my lifetime and I am willing to take my chances.
-
I'm so grateful to read all of your input, I met with my RO 2 wks ago & am waiting to see if I got insurance approval for the Oncotype Dx. I'm supposed to see her on Mon . Today is Fri & I still don't know if they are proceeding with Oncotype. At our initial consult I told her that I was considering opting out of rads as my cancer was DCIS Grade 1 Stage 1 & a small IDC which also was grade !A , Stage 1. I had a lumpectomy & didn't get clear margins & had a 2nd recision & got clear margins, so Protocol is Hormone Therapy & 33 rads. I have done a ton of reading & research & am 95 % leaning toward opting out of rads. I am taking Arimidex & am experiencing no side effects. I guess I'm just waiting on Oncotype. I have changed my eating habits & will continue that as well as supplementation . exercise & other alternative therapies. The only thing I'm having anxiety over is challenging my very insistent Oncologist with my decision to opt out. After reading some of your responses, I feel I'm not alone in this decision making process. -
I was diagnosed nearly three years ago, lobular, 2a...three small tumors 1cm and less. er/pr positive, her2 -, no node involvement. TAC chemo. recommendations from 5 physicians said no to radiation. I still worry about not having it done. but water under the bridge now. Oh, bilateral mastecomy, cancer on left side. I think I may have pushed for it if it were on the right. Also, bad asthma, so.... gods hands I guess
-
I know this is a very old post, but I'm curious if anybody can relate to it now…
I have my radiation consultation today, and I'm left feeling very nervous about the whole situation. The fact that I could get cancer because I do radiation makes me nervous. I have stage one IDC, and my sentinel node had Less than .03 mm of cancer in it.
If I do have a recurrence, can't I just read it then with radiation or a mastectomy. I'm nervous about using my ticket for radiation now and having a reoccurrence and not being able to do it later, or having cancer because I did radiation
Anyone else opt out?
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team