Afraid to do radiation but feel I don't have a choice
I feel guilty posting on this forum where so many others are less fortunate than me - so feel free to throw virtual tomatoes at me - I know my problems are nothing compared to most. But I can't decide what to do. I have a 2 mm invasive lobular, Ki67 5%, ER+, HER2 neg, grade 2. Found only on mammogram, of course. Long history of LCIS prior to that. There are just no studies on the natural history of something this small. My surgeon and oncologist admitted they basically have no idea what my recurrence rate is with or without rads, but say it's "excellent" with them. Smaller studies suggest my long term recurrence (without radiation) could be as low as 10%; disease free survival with radiation is as low as 1-2% over 15 years in the normograms. I do not want RADs because I have a long long history of refractory asthma, double pneumonia with surgical treatment of a lung effusion in the past and a recurrent chronic cough. And I'm athletic. I'm having trouble because I have a small child and certainly don't want to be irresponsible, but if I am the 2-3% of those who gets chronic pulmonary problems, my quality of life would be miserable, and the benefit really does not seem that convincing to me - if RADS reduces your recurrence rate by half, and has only a small mortality benefit, then my recurrence rate would go from pretty low to even lower, and would probably be treatable. But pulmonary fibrosis is irreversible and untreatable. I'm worried that the reported incidence of pulmonary complications with RADs is lower than the true incidence. Please understand that if I didn't have a 2 mm tumor I wouldn't be hesitating for a minute.
Anyone who had Radiation who is athletic that can help to reassure me that they don't have any pulmonary symptoms? Anyone with previous asthma or lung problems who did OK?
Comments
-
Now you might think this suggestion crazy but I'm just saying: some women decide to get mastectomies in order to completely avoid radiation.
Sorry can't reassure you on the fronts you want to be reassured about. Mastectomies bring their own host of issues, but radiation fall out (no pun intended) not among them
-
Hi
Radiation really freaked me out but I did it. I am very athletic, exercised through oath chemo and radiation but I did have a small cough come p during the treatment. My RO didn't put me on meds for it, to be honest. It wasn't bad enough to need meds.
You have to get in the mind-set for it! You can do it... Is there a choice? I wanted to play the side with the best odds, I did everything they told me to!
Good luck!
Stacey -
I am one of those women who chose mastectomy for that reason. Just the idea of being radiated freaked me out. If you haven't had your surgery yet, choosing mastectomy over lumpectomy is one possibility, but you should know that making that choice doesn't absolutely guarantee you will avoid radiation. My tumor was way around the side and there was very little tissue there except skin, the tumor, and muscle fascia. My surgeon told me that if the cancer had grown into either skin or fascia, RT would have been advised even with a mastectomy. I asked my surgeon what percentage of patients need RT after MX, and IIRC she said less than 5%. Since MX was my only possibility of avoiding radiation, I chose it even without an absolute guarantee I wouldn't need RT. Fortunately, I had clean margins on both sides, so I didn't need rads and can't tell you what to expect in terms of side effects.
Here is a cyber (((hug))) for you, my fellow-radiation-avoider. I hope you can find a treatment plan that lets you skip the rads.
-
You always have a choice, hopefully you make the one that you (and only you ) can live with.
Also no matter how many women who respond that rads gave them this or didn't give them this, each person is different. What may happen to one person may not happen to you post rads and vice versa. I was told that if I had a mastectomy I would not need rads. However post surgery I had 6 positive nodes and was 31 at that time. If none of the latter happened, I would not have had radiation.
-
I exercise all the time and did (left side) radiation with no problems then or later. The mapping is very specific and it generally very safe, but since you have a history of asthma and lung difficulties, maybe you should add an allergist or pulmonologist to your team...they would look at things from a different point of view and perhaps give you some direction...either to ease your fears or validate your concerns.
-
I have asthma and had no problems. BUT, reading your OP I feel like your gut is telling you not to do it.
If we want to gamble for better quality of life, it is our right. We have to live with the consequences.
SE's are under reported. Chemo brain, LE all of it. I believe rads really was what gave me LE I was swelling like crazy from the get go.
By all means get a second opinion from the best onc you can find. Google for studies that pertain to your question and seek that person out.
I think you sound like you have some reasonable concerns, and you are an uncommon case, so docs don't really know.
-
Don't know if my 2cents worth helps, but I am another "avoider". For me, Mx, no Rads was a no brainer.
Certainly not for everyone, but I was so afraid of chest problems too. I have Asthma, and had lung issues after catching a MicoPlasma Infection when I was on a cruise.
It's a very big decision for you make. I'd probably get a second opinion too, just for peace of mind.
I wish you luck, and the clarity to be able to make the right decision, for you.
-
I had my lumpectomy March 22...stage 1 no lymph nodes affected. Rad was postponed since I had a UTI and my left breast was slightly inflamed...for which the surgeon put me on antibiotics for ten days (really didn't help my breast inflammation, but cured my UTI). I'm scheduled for rad planning next week...really nervous about it since rad will be left side and I had a heart attack with stent placed end of 2011. I wasn't really told why I need radiation therapy, but just that I need it, then on meds for 5 years because of ER 79% and PR 85%. I'm absolutely exhausted since my surgery...I believe because I haven't really gotten back to "normal" after my colon cancer surgery last year with 40 days in the hospital. If rad will make me even more tired than I am now, I'll probably spend a majority of my time trying to stay awake, which I already do now. Was told that radiation therapy could cause me to have another heart attack.
-
I had bilateral tumors & opted for bilateral mastectomy, mostly to avoid future mamaograms. I also thought it would mean no RADs. My tumors were larger than yours(1cm+). I ended up having radiation on both sides anyway. During RADs, I ran 3-7 miles a day, went to the gym most days(weights/core/classes) & didn't limited my athletic activities with the exception of swimming. I had to stop swimming about 1/2 way thru because of redness & soreness on my chest. The swimsuit was just too uncomfortable. I found that exercise took my mind off the annoying SEs(just skin for me) RADs had to offer. I also feared I would be tired(especially with bilateral radiation) & have to slow down(aka stop execising). Nope, never happened.
I was 52 & my son was not that young @13 when I was diagnosed/treated. I didn't do chemo & i suspect that may have been partially why I did so well with double the RADs. I had no pulmonary symptoms but I have no history either.
I 2nd the advice above re: Pulmonologist or allergist. Preferrably someone who has treated you in the past for your respiratory issues.
-
homeskillet- Ask your cardiologist to weigh in on your situation. I don't know if having a stent will matter. Did your cardiologist tell you RADs might cause you to have another heart attack? If so, you need to take this into consideration. RADs might not be a good idea for you.
To have colon CA & now breast CA is more than anyone should have to endure. My post above was intended for Maria who started this thread & sounds younger than me(has a young child anyway). You posted when I was typing.
-
@homeskillet, you need rads because you had a lumpectomy rather than a mastectomy. Lumpectomy with radiation is equivalent in ten-year survival to mastectomy alone. Cancer is much more likely to recur if the lumpectomy isn't combined with radiation treatment. More information comparing lumpectomy and mastectomy can be found on the main breastcancer.org site.
-
Some studies are suggesting that a lumpectomy PLUS rads actually reduces recurrence rates more than a mastectomy without rads. Just another thing to take into consideration. SIGH!
-
Maria20, as several others have noted, we're all different. You have valid concerns based on your individiual situation.
Getting a second opinion at NCI Center of excellence might provide a comprehensive set of options. As it happens, both Northwestern and University of Chicago have the NCI Center of Excellence designation.
Here's a snippet from the NCI description:
What is an NCI-Designated Cancer Center?
NCI-designated cancer centers are institutions dedicated to research in the development of more effective approaches to prevention, diagnosis, and treatment of cancer
Getting a second opinion from one of these centers would make sure that you have a full set valid options, based on the specifics of your situation.
There's not a one size fits all solution, but rather an opportunity to choose what's best for you.
It's a tough place to be. All the best.
-
homeskillet, from what you are saying, I feel like rads really might not be for you. Yes the cancer could come back but 50 percent of ER cancers would have never left the breast. Maybe we are not getting it all.
-
I am also scared. I have had 4 rounds of chemo, with 2 more to go. My Dr said that I would have to have 6 weeks of radiation next because my tumor was so big. I cried....again. It did make it easier when she hugged me and told me "You do not have much of a choice". Because this is the woman that has been by my side...hugged me when I needed it...and been tough with me when no one else thought they could....I said "OK". That some how made it easier. I am still apprehensive, but I bet radiation will be a walk in the park compared to everything I have been through.
-
I had mx and had rads, within a month i had a severe chest infection that lasted weeks, now i have ongoing breathlessness and breathing problems and am being investigated for heart symptoms too, whereas before i had never had either........like you i have other health issues and have a body that is very sensitive to interference of any kind, drugs, rads etc.......so my advice would be consult with pulmonologistand the rads oncologist re your concerns....
Good luck -
HELLO ALL,
I am new to this thread but will be following along closely as I am schedule to start RADS in the beginning of June with mapping to come twice this month. I am actually here celebrating because May 1 and 2 left me DONE WITH CHEMO AND THAT DREADED NUELASTA SHOT! DOING THE HAPPY DANCE, HAPPY DANCE, HAPPY DANCE! And to make matters better, May 1 marked the 52nd. anniversary of my infamous BIRTHDAY MONTH! I was born on May 31st. and have found it quite fun (and often prosperous) to celebrate ALL MONTH and drive my friends and family crazy! I am a true Gemini so WE (Carolyn and Caroline) will be looking forward to the days to come. May 1 and 2 were already the 2 best gifts I could ever ask for (FINISHED CHEMO AND NUELASTA SHOTS as stated previously).
So carry on my fellow brave Warriors and be sure to throw any knowledge or tips my way as i am sure I will need them. Oh YES - I will consider these more "special" gifts! Thanks in advance.
Peace, love and blessings and wonderful days ahead with minimal SEs to ALL! See ya soon.
-
@ Coraleliz, Homeskillet, Ruthbru, Megadots et all,
I took had a left-sided lumpectomy but my RO stressed that she will angle the beams so as to NOT touch my heart, lngs and other vital organs. Mapping this month X2 will give them the whole picture for me and I will even be tattooed so that the beams are focused correctly every time. I have volunteered for a hugh study which will compared the way Canadians and Americans treat breast cancer patients with RADS. The Canadians find that just 3 weeks with simultaneous boosts is JUST as effective to the Americans current protocol which is 4-6 weeks of RAD and then boosts. Don't know which group I will be picked for until the treatments start in early June but I am hoping of course for the Canadian protocol. So for all of you out there still contemplating this next phase, DO ASK YOUR RO if your Center is offering or part of this study. STILL DOING THE HAPPY DANCE, HAPPY DANCE, HAPPY DANCE here as Chemo and Nuelasta are over. Put a fork in me, I am DONE! YES!
Peace all!
-
I ran through my rads treatment. No lasting effects for me other than the bad boob is perkier than the good one!
-
Maria, as others have said, it would be a good idea to consult with a pulmonoologist. I also have asthma. It's fairly mild but during rads and for a long time afterwards it troubled me more (though it did return to being almost as mild as it had been). Also, scans have shown what is termed "fibrotic changes" on my lungs.
Leah
-
Have you considered any of the partial breast irradiation treatments? I know that not everyone qualifies for PBI, but you may want to at least have a RO appointment to discuss. There is IORT (during lumpectomy), Mamosite/Savi, and external PBI. I had the external PBI...it targets the tumor area so there is less chance that it affects other organs such as heart/lungs.
-
PEACE to all new Sister Warriors and Stop Those SEs already, OK? It's the weekend. I posted this Flash Mob link a while ago but it is worth another look or a FIRST LOOK. It is a great, uplifting presentation. Please CHECK IT OUT. You'll love it:
cmbernardi wrote:
Good Morning Warriors!
Please CLICK the link below or cut and paste this link into your web browser to see an amazing Flash Mob supporting our cause! Scroll down a bit when the page opens and watch the video. Please share as well. Have a Blessed and Happy Day!
-
Good Quote on another Thread. Check it ou Sisters:
I walked across an open field at winter's break as the sun danced on the last few drifts. I imagined my fears would melt one by one as I learned to love myself.
I love the thought for the day!!!! -
Asthma, runner, rads, no difficulties
-
LET EVERYONE WHO HAS A WIFE/GIRLFRIEND/ DAUGHTER KNOW PLEASE!
PLEASE SHARE..
Bottled water in your car is very dangerous!
On the Ellen show, Sheryl Crow said that this is what caused her
breast cancer. It has been identified as the most common cause
of the high levels of dioxin in breast cancer tissue..
Sheryl Crow’s oncologist told her: women should not drink bottled
water that has been left in a car. The heat reacts with the chemicals
in the plastic of the bottle which releases dioxin into the water.
Dioxin is a toxin increasingly found in breast cancer tissue. So please
be careful and do not drink bottled water that has been left in a car.
Pass this on to all the women in your life. This information is the kind
we need to know that just might save us! Use a stainless steel canteen
or a glass bottle instead of plastic!
This information is also being circulated at Walter Reed Army Medical
Center … No plastic containers in microwaves. No plastic water
bottles in freezers. No plastic wrap in microwaves.
Dioxin chemical causes cancer, especially breast cancer. Dioxins are highly poisonous to cells in our bodies. Don’t freeze plastic bottles with water
in them as this releases dioxins from the plastic. Recently the Wellness
Program Manager at Castle Hospital , was on a TV program to explain
this health hazard.
He talked about dioxins and how bad they are for us. He said that we
should not be heating food in the microwave using plastic containers…..
This especially applies to foods that contain fat.
He said that the combination of fat, high heat and plastic releases dioxin
into the food.
Instead, he recommends using glass, such as Pyrex or ceramiccontainers
for heating food… You get the same result, but without the dioxin.. So,
such things as TV dinners, instant soups, etc., should be removed from
their containers and heated in something else.
Paper isn’t bad but you don’t know what is in the paper. It’s safer to
use tempered glass, such as Pyrex, etc.
He reminded us that a while ago some of the fast food restaurants
moved away from the styrene foam containers to paper. The dioxin
problem is one of the reasons….
Also, he pointed out that plastic wrap, such as Cling film, is just as
dangerous when placed over foods to be cooked in the microwave.
As the food is nuked, the high heat causes poisonous toxins to actually
melt out of the plastic wrap and drip into the food. Cover food with
a paper towel instead.
This is an article that should be shared with anyone important in your life! This information has been known for decades BUT conveniently swept under the rug probably by the same IDIOTS that deny Globl Warming@ -
My RO assured me the rad would not hit vital organs. Says with the new technology the beam can be stopped at chest wall. I'm about 3 months done, no problems.
-
Thanks to everyone who posted to my original question, esp those who are athletic and have lung issues and did OK.
I have spent weeks researching my risk/benefit situation. I know (due to chronic MS issues) that I would never tolerate the AIs so RT is my only additional treatment option. (My tumor was 2 mm ILC, ER+ and undetectable Ki67)
In the meantime, only two weeks ago, an Italian researcher named Tinterri presented an abstract (addendum to an earlier study he published) on women 55-74 with very low risk tumors like mine (mostly pt1A and pt1b). He found a 4.4% 9 year risk of in breast recurrence without radiation and a 3.4% risk with radiation, in this "very select" population of low risk women. ascopost.com/ViewNews.aspx?nid=3148.
All women did receive the hormones of course, so in my case - my risk without radiation would probably be about double that 4.4% since I would also refuse hormones. I am also slightly younger than the women in that study. After tons of research I have estimated that my own absolute risk reduction with radiation is probably only about 6-8% (i.e from 10-15% to 5-7%) over 10-15 years.
I have an appointment with RO next week for "planning session" including repeat mammo (6 wks after last one!) and CT etc. I am very nervous and still not sure what the heck I am doing. He previously agreed to take "extra precautions" to spare my lungs, esophagus and heart. (I not only have asthma and scarring from previous pneumonia but refractory GERD). He also wanted to do the boost but agreed it could be "negotiated" (Up to Date says this should be optional in "low risk patients".
This diagnosis has taught me how imortant it is to not just "trust your gut" and "stand up for yourself" but do tons and tons of research and annoy the heck out of all your doctors if necessary. The fact that all of our doctors continue to quote relative risk numbers to us, rarely ever clarifying what our absolute risk reduction actually is. The fact that research studies rarely examine what happens without treatment and when they do the studies are small and overlooked. The fact that even when the data is questionable, the authors still interpret treatment modalties as beneficial. A recent MDACC study stating that radiation "clearly benefits women" > 70, showed that their recurrence risk was only reduced from around 6% to around 3%. That's such a small benefit for a women > 70! . But unless you read these actual studies - you will just be told "the benefit of this treatment outweighs your risks".
There's no such thing as a treatment which will always have a "benefit that outweighs the risks" since each of those are so different in all of us. And yet medical studies and patient information sites about cancer lump everyone into one "one size fits all" category. The NY times article hit it on the nail - the one that said detection is way out of control but treatment for late stage breast cancer is not progressing. I am so blessed and so luck to have this very minor diagnosis that should not shorten my life.
If I end up not being happy with the RO's treatment plan (i.e. he dismisses my lung and other organ concerns) or if he insists on the Boost (despite my bringing up the literature) then I will probably refuse to do the radiation treatment.
In that case I may be the first women in history to walk out of an RT treatment planning appointment at a highly rated academic center. I wonder if they "black ball" you from ever being treated there again if you do that ????
-
Hi,
Anyone receiving radiation face down on the table instead of face up? -
I had face down. It was actually tough on my shoulder.
As I mentioned I am not really athletic, but I have asthma and I dance.
No extra asthma problems from rads..and I did not do the boost since I had reduction with lumpectomy and I had no tumor bed left. You do not have to do the boost.
-
Well Hello Out There Sister Warriors,
Just as I put my fourth and LAST Chemo treatment behind me, I foolishly and accidentally tripped while gardening last week and broke my left foot at the fifth metatarsal. This event has been worse than all the Chemo put together. I had an ultrasound which found a blood clot so I was sent home on Coumadin and IV antibiotics. Of course I drive a new Jetta, stick shift, so relying on my Mom (who is visiting, Thanks Goodness) to revive her driving skills has been quite a hoot (bump, stall, jump, stall, bump, beep, beep, bump, jump, stall). Now I am anemic, have 2 blood transfusions to look forward to today and then a chest x-ray and bone density study next week. And the orthopedist told me that this is one of the toughest bones to heal so 3 months in a boot and schlepping rides to Radiation therapy next month I guess.
Please do your magic out there Sister Warriors and send some good Karma and prayers my way. Who would think that the simple act of helping my Sister plant flowers would end up so crazy!!!!Peace an minimal SE's to you all. I'll keep you posted.
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