Radiation regrets?
Does anyone here on this board regret having had radiation therapy? Do any of you think it did more harm than good, either to your disease progression or your quality of life?
Comments
-
I do radiation again even though I burned very bad (have the scars to prove it). If I had known how bad the burns would have been before hand - I'd still have done it. It was only part of the arsenal used against the monster and I'd do anything to defeat it.
-
I don't regret it. I wanted to throw everything I could at my cancer, I had clean margins and minimal lymph node involvement. I didn't really burn, I had gone through chemo, so when I compare the two, the radiation was actually no big deal. I feel like this way, if I get a recurrence, I'll know I did everything I could. We are all different, so you have to do what you think is right for you. Sending positive thoughts your way.
Barbara
-
I had very little burning. It was exhausting going every day before work, but not too bad at all. I guess some people burn, depending on your skin, I was just not one of them. I think it was more an inconvenience, than anything else. The alternative would have been a much bigger inconvenience. I wanted to do everything I possible could to try to get rid of this crap
-
Thanks for your replies! I hope there are more. My tumor was .7mm (everyone keep referring to it as "tiny" on the film) and a Grade 1, ER+. My sentinal node was clear. At first I was just relieved that I wouldn't be looking at chemo, but now that I am reading about skin wounds that won't heal and permanent breast discoloration and fat necrosis and pain that lingers for years, I'm getting really really worried!!! I have very fair skin and have never tanned-I burn badly and quickly when exposed to summer sun. My skin is also easily irritated. I get a rash from most of the lotions and cosmetics I try.
-
I would do it all over again as I also wanted to all that I could to keep it away. I didn't burn that much. I was extremely tired from it ,also because I had just finished 12 rounds of chemo.
-
I had radiation done in 1987 and if I had to do it over again (today) --NO, I wouldn't--what I didn't know was how hard the scar tisssue would become from the radiation, my boob hurt all the time. I had to wear a bra because going without hurt too much and I didn't like any attention paid to lefty during intimate times either. And I'm not convinced it didn't have something to do with my recurrence in 2010, since the tumor was in the middle of the scar tissue and couldn't be seen until it grew outside of the scar tissue.
But in 1987, there weren't the surgical options available today. In 1987, radical mastectomies were the norm and I had to fight to get a more limited surgery (I was told it wasn't possible and I would be horribly deformed). So in 1987, it was my best choice but in today's world, I'd go with a mastectomy instead. I'm so happy with my DIEP flap reconstruction.
-
As far as my treatment is concerned - I have NO regrets. My skin didn't react until the very end and it was a bit uncomfortable but not too bad. I was surprised at how tired I got, but that passes with time. Muscles/shoulder on rads side are stiff and not as flexible, but I keep exercising and it too is getting better with time
-
No regrets. I wanted them to zap the HELL out of any possible remaining cells!!!!
-
I just had my 13th treatment out of 33 planned, today. I'm having some regrets.
I'm horribly fatigued, burning and edema since 2nd treatment and rash of some sort after treatment 8.
Since radiation is cumulative I'm starting to have a hard time thinking I can do 20 more!
Saw a link on these boards to NCCN.org and I'm wondering why my doc wants me to have 33 treatments...I don't think the "boost" is recommended for my particular diagnosis or pathology.
My doc said if I don't have them all I wasted my time having any of them....not sure that I believe her...I mean considering I had to sign a wavier to have treatment...how do I really know this is "best" for me and not just more $$ in their pocket? I have PPO health insurance which means I pay 20% of all allowed charges and hmm ever since we've heard the word obamacare...my docs have been ordering LOTS of tests for me...
so I'm pretty suspicious. -
I would very lukewarmly say that I do not regret having had radiation. Since I had had a lumpectomy and a positive node, radiation was definitely necessary. I was one of the rare people who found chemo easier than rads and I had only a mild burn from rads. I found rads to be very difficult emotionally whereas the chemo infusions were done in a warm, friendly, and supportive atmosphere. I certainly hope I never have a recurrence, but if I do, I would gladly have chemo again. However, I would have a mastectomy if that meant I could avoid rads again.
-
No regrets! I had an aggressive form and I wanted to give myself the best chance at long-term survival.
-
I'm with Elizabeth1889 in that I do not regret having had radiation. I had a lumpectomy and 2 positive nodes so, radiation was important. I also found chemo easier than rads and I had a mild burn on the last day of rads. Like Elizabeth said, rads was very difficult emotionally whereas the chemo infusions were more supportive.
I actually wonder about why the heck I did chemo. 2 little micromets that many studies say don't even count. I'm dealing with all kinds of things from chemo that had I know beforehand... oh well, you never know.
-
I had radiation after chemo and don't regret it. I was lucky in going to a very supportive radiation oncology practice. Like the OP I am very fair skinned (in college friends would stand next to me in group photos to look tan!)
My MO had told me that the RO is very good at mitigating side-effects. She used a "beam splitter" to mitigate skin effects for the whole breast portion. Things got pretty red with the boost and with suprclavical nodes. When things started looking very red and a bit weepy, the radiation nurse told me about using astringint and Cool Magic gel sheets, and let me know that the pharmacy at the out patient center carried both. The pharmacy is next door to the radiation oncology center. There was also a nutritionist that come in once a week. Before I started, I met with the radiation nurse and we talked about what to expect and the importance of maintaining good nutriton. There were handouts so I had the information to take home, with phone numbers to call if we ran into problems.
Everybody is different in how they react to radiation. The centers and ROs are different too. I found the radiation oncology practice that I went to very supportive, It's a daily adenture for nearly 2 months -- I had 35 sessions. It helps if the staff is supportive, and the surroundings are pleasant.
I'm sad that so many others didn't receive the same support.
-
In a way I do regret having radiation. I think it helped to push me over the edge in developing lymphedema. However, I will never know for sure if that's actually true. I also will not know if it did or didn't help as far as killing cancer cells. I think if I were to do it over again I would likely go for radiation but still there are many days I regret it. I was in the 'grey area' to receive rads. My rad. onc. said to treat aggressively she'd recommend it. So that is the path I chose.
-
I wish I had not had radiation. But I am a senior, oncotype 7, ++, - node, didn't need chemo.
There is an article on this website about seniors possibly not needing radiation.
I now struggle with radiation fibrosis or axillary cording from the lymphatic system in the area being "cooked." This causes me a lot of pain in my arm and also down the side of my chest. NSAIDs don't do anything for it. I take opioid pain meds. I have limited range of arm motion. I've had it "massaged" to break the cords, but this only worked for a few months. My red and white blood count are permanently a little low. I need to take iron daily. My lungs are scarred and it's hard to breathe. I was nearly unable to eat or drink because my stomach was in the field. I'm told to expect the ribs in the field to break at any time and not heal.
I had only a little redness during radiation, but halfway through nearly quit because I was so tired I couldn't drive, from low blood count. I spent the next two months mostly on the couch.
I was told I had to have rads. Then I was told I had to have tattoos, but I refused and just had marker spots. I consider tattoos punishment, like a scarlet letter. I wish I had at least I had quit halfway through, but I was bullied into continuing. I wish I had done more online research and skipped radiation.
-
Alcie1, I am sorry that you were bullied into continuing rad treatments and even sorrier that you have such serious side effects. Our doctors sometimes go into a "one size fits all" mode and we suffer because of it. Good for you for refusing the tattoos. I wish with all my heart that I had done the same thing, but like you, I was told that they were necessary. I hate my tattoos. I wrestle with whether or not to have them removed. Sometimes, it seems like I should be worrying about other things, but every time I see those dots on my skin, it reminds me of an extremely unpleasant time. Sending hugs to you.
-
I would do it again. I'm not going to do tamoxifen, so I'm glad I did the rads - (the side effects were too much for me to deal with, so tamox is out)
You're probably going to read more "bad" stories than "no effect" stories on here, because that's human nature. Having finished radiation with few problems, I stopped checking this section of the board - I happened to see your post because I was randomly clicking on things - LOL - I had a few minutes to kill before heading out. For the record, I had 25 treatments, and was a little pink until after treatment 22. I got a little pinker and had some pain after I finished, but once I started to peel, that was gone, too. It was no big deal for me. There was some tiredness, but I found that going to the gym helped me combat that, so again, no big deal.
The choice is yours, and while it makes sense to get opinions, each person's body reacts how it's going to react, so like with chemo, one person's experience could be vastly different from your experience.
-
I am really leaning toward opting out of radiation therapy, although I have been warned that I will get no
support from my medical team for that choice. But, at least
for now, it looks like the stage and grade of my lesion puts my absolute risk
of recurrence without radiation at under 10%! That risk drops to 3% with
radiation therapy, which is convincing to the drs, but they're not risking the
long-term side effects from RT, which can include permanent nerve damage, chronic
pain, permanent weakness in the arm and shoulder, shingles, and permanent
hardening and discoloration of the breast. The kicker for me was the
recent report that radiation therapy itself converts a significant number of
low-grade cancer cells into more aggressive cancer stem cells. If this
monster does come back without radiation, it will almost certainly be low grade
again, but if it comes back after radiation, it is more likely to be a
high-grade, aggressive form. No brainer for me! In my case, I feel
like RT would be tantamount to burning down a forest because one bear wandered
out and there might be a couple of cubs still in there.Hope I'm not pi$$ing anyone off here, but I really am open to other people's take on this. I have my first appt. with the RT dr. on Monday, and I really do want to go in with an open mind, but it is fast closing with my reading.
-
We have similar diagnosis, so I will put my two cents in. I did the radiation treatment, but only had 16 sessions over 3 weeks. The worst part was the hour drive every day, and the fact that my skin under my left breast peeled twice. (I think it's called moist desquamation, but some foot powder helped immensely.) I was a little tired towards the end, but the only long-term side effect so far (that I know about) has been a toasty brown aereola! I have three very tiny tats which look like freckles. I did it because that was the "deal"...lumpectomy with sentinal node biopsy and a side of radiation. I DID opt out of hormone therapy, however. Ask lots of questions and do your research...wishing you the best!
-
Babyfacenelson, There are a lot of trade-offs in the treatment decisons that we make.
Here's a link to an article from the research section of the main site that talks about a partial breast radiation treatment that has fewer side effects:
http://www.breastcancer.org/treatment/radiation/new_research/20111004.jsp
It might be something to discuss with the RO as way to reduce the risk of recurrance with radiation treatment while also minimizing the treatment's side effects.
I have no regrets about my own radiation treatment and had manageable side effects. I had node involvement so stadard external radiation made good sense for me.
All the best.
-
Thanks Jomama! That is interesting that you had a much shorter course of treatments. That would weigh into my decision when I see the rad dr. I will be really interested in any steps he takes to minimize the long-term side effects. I am lucky in that the rad center is less than 15 minutes from my house, and to top that off, I am working out of my home and could actually work topless for hours after treatment. I have read that helps with side effects, but how many women get to do that??
Unfortunately, Megadotz, I have Kaiser insurance and they don't do partial breast RT. They are pretty conservative in their protocols.
-
no regrets, I wanted to do any and all to get the junk out and not have it come back
hasn't returned so far
did get a nasty blister under the boobie and that took a bit to heal
-
Hi everyone, I asked my onco how many I would need and she said depends on how many nodes are positive. So we think I have 7 so she said 15-19.
My worry is I have general & solar urtIcaria and worry I will Come out in hives. Also I have very pale white skin so I'm pooing my pants. -
"Pooing your pants"? I just can't keep up with the technical terms!!
But, I do feel the same way. I have very fair skin--I don't think I have ever had a tan. I go directly to burning, blistering, peeling. I get hives and angry rashes just for thinking impure thoughts!!!
-
Haha that's very funny.
-
I'm flipping the original question on its head a bit - in my case I declined rads and have no regrets. I had one positive node, but had a bilat mx, full ALND on the affected side, and had very good margins. I also had 6*TAC chemo. I got a couple of consults with different rad oncs. It was agreed that I was a borderline case.
The rad onc I really connected with said she'd be comfortable if I opted for rads, but also be comfortable if I declined them. According to the studies at the time, rads gave me no survival benefit at all, and only reduced my recurrence chances by 10%. The rad onc explained it as follows: She said that 90% of women in my situation are radiated for no reason - 85% will never recur, whether or not they do rads. 5% will recur, whether or not they do rads. So rads only gave me 10% protection against recurrance, and did nothing to improve overall survival. I did a personal risk-benefit analysis, and in the end was comfortable with that 10% and declined rads. Another woman in my exact same situation may not be comfortable with that 10% and will accept the recommendation to do rads, and that will be the right decision for her.
It was a very difficult decision to make at the time, but once I made it I knew in my gut it was the right decision for me. Four years later I have zero regrets about declining.
-
The radiation was the easiest part of my treatment.
-
MOMINE!! I LOVE YOUR AVATAR!
I just discovered Hyperbole and a Half, and I fully intend to buy one of her t-shirts. I plan to get the one with the excited "clean all the things!!" image on front.
I found her through a link at a breast cancer site. Funny I should see her here again. Is she a BC survivor?
-
Hello,
I did not have radiation but wanted to post a reply to this. I have had to consider both options of Lumpectomy with RADS or MX. Sorry to hear of more BC women dealing with SEs of our treatments.
At first I was going to have radiation and a lumpectomy (IDC 7MM), then a second area (DCIS) was located in same breast within a couple of weeks. I immediately went from lumpectomy with RADS to a MX (done 2-3-12 Node negative).
Knowing what I know now, I would choose the MX over lumpectomy and RADS. This is patient specific.
So far, I am to have no chemo, no RADS, yes, hormone blockers (Arimidex) and I'll have my TE removed and reconstruction on Monday 4-30-12.
My MX was almost "easy", no problems with TE, no LE, no infections, full rnage of motion early-on etc. I don't have to worry about radiation long term effects, RADS SEs (I've fair skin and even had Melanoma insitu- who knows if RADS matter with that history?), no worries about the radiation causing future cancers etc.many years in the future. However, I suspect that if people have a relatively successful and "good" experience (within the lousy context of breast cancer to begin with) we feel "happy" or "accepting" with our decisions. Basically, we may be biased to feel we made the best decisions at the time we could based on what we knew.
Pretty much I'd say we choose our own poisons. Having the hindsight of being in both positions and the associated emotions surrounding both- I'd take a skin sparing MX with no chemo nor RADS over a lumpectomy with RADS.
If my cancer ever returns in my "good" breast, I may not have that MX choice instead of chemo and/or prophylactic RADS (or whatever is recommended) but you bet I'd take the MX based on how I did in round one. Again, we are each unique.
Good wishes to all of my RADS sisters from the MX ladies!
Deborah2012
-
I also was supposed to have lump and rads but after lump and chemo (6tx of TC), I decided against radiation and to have a BMX instead. I had left-sided cancer and did not want to risk radiating my heart.. didn't want to worry about scatter on lungs etc... and didn't want to increase my risk of LE or get burned... I had one micromet and clean margins, so with a BMX I had 4 doctors tell me I did not need radiation in addition. They all thought though that BMX was overkill, but in the end, I am glad for my decision.
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