Do you regret receiving radiation treatment?
Comments
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"How many clearly benefit from radiation?"
Absolutely nobody can say they clearly benefitted from radiation therapy. Nobody. The benefit is that you didn't have a recurrence. If you don't have a recurrence, you'll never know if it was the result of radiation therapy or if it never would have happened without it. I chose radiation therapy because my sister-in-law chose not to have it. She eventually died from her bc. I figure she must have had a seriously aggressive cancer and radiation probably wouldn't have made a difference. But I'll never know. For myself I think I could live with regret but I could never, ever put my husband, children, grandchildren, siblings, extended family and friends through the misery we experienced with the loss of my sister-in-law. The "What if's" are still here over 15 years years later.
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I completed rads Aug 31, 2012, just had a 6 month checkup. I had every s/e possible and still have limited ROM in my shoulder, lymphedema in upper arm and in breast. My pec muscles were severely affected and still are stiff and painful. The pain is constant, low or dull aching pain, occasional throbbing. Looking back at my bc characteristics, I do wonder if rads were necessary and do have thoughts that this was overtreatment. Yes, sometimes I regret having the rads, but at this point, the only way to go is forward...My recommendation for anyone considering rads is to be really sure that the treatment is necessary. Look at the benefits with regard to both recurrence and to survival. If you believe the rad tx will give you better odds on either, then do it.
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I chose to have rads. As of now, 1 year out, I have no regrets. I was a bit pink at the end of my 25 treatments, felt sun-burned for a week after that, but never had the skin split or anything, have no other symptoms. Of course, if something happens in the next 30 or 40 years because of this decision, I may change my mind about being glad I did it, but right now, I'm glad I did it, and it's behind me.
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Had radiation, no problems. Was glad to throw everything recommended at it.....wanted to reduce the chances of ever having to go through cancer treatment again down to as low as I could possibly get it.
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i had rads even with a bmsx and think i was overtreated...no positive nodes on imaging (did neo adjuvant), 2ish cm tumor, not close to chest wall etc. The RO's deciding factor was LVI present. After chemo i had a complete response so i wonder if it was really necessary, but i was her2, grade 3 and 42 at diagnosis so i wanted to throw everything at it. Funny thing is when they thought i was only have a lump no one ever said anything about long term effects etc...only after i decided on a msx did they go into all of that - and was told i was in the dreaded grey area and it was up to me. Well after my RO planted the seed in my head that ppl with LVI have higher loco reg reccurance thats all i could think about. i think in the future neoadjuvant chemo results will change rads practices
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I want to post an update. My wife had just finished radiation and no, it wasn't too bad, fortunately. So far no noticeable lung issues. No open skin, otherwise severe itching. They treated big area. She cought some cold (flu?) on the very last day of Rads. I did give the Rad Oncologist a very hard time prior to staring treatment by asking questions.... (and no I don't feel guilty for that).
My wife and I want to thank you, people who posted your advices here, from the bottom of our hearts.
Now she's facing Tamoxifen for 5 years.... Another test, isn't it?................ -
I had rads because of stage 3 cancer, large tumor, extensive lympho-vascular involvement and 7 nodes. The rads were on the right.
The only lasting effect so far is a spot of dark skin on my back. I did have some shortness of breath about 6 months after rads, but CT and heart U/S showed that I had zero rad damage to either organ. It was either allergy triggered by taxotere or else depleted magnesium. It has since resolved.
I did wear a lymphedema sleeve all through rads and saw my LE therapist regularly to avoid triggering further problems.
I also did my best to get some fresh air and exercise every day, although I was rather wiped out, mostly from the after-effects of chemo.
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No regrets. By end my boob was charcoal black and peeling . It was very painful and ugly. But things started to heal up fairly fast. Hang in there. I used aloe vera and emu oil. I had a great cosmetic result.
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I have no regrets about having radiation. I was on a protocol that I only had had to have 19 rounds. If something were to come back, it wouldn't be because I didn't do enough.
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I had a large tumor on left and very small spot on right. Chemo was ok but rads did a number however if I had to do it again I would. Makes me feel safer. By the way 1 broken rib about a year ago and my skin still is yucky to me. Have trunkel LE and left arm LE, learned to live with it by wrapping, using machine. I am alive so quess that is what counts.
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Scared and sad. I started chemo this Wednesday. I guess my mo referred me to the ro at the cancer center. They called to schedule an appointment that I thought was way to soon since I have 4 months of chemo ahead plus surgery and everyone has talked about rads as optional. So I was thinking this decision would be further down the road. So the day after my first ac treatment I was feeling great. Headed down to get my neulasta injection and then on to this surely miniscule consult with the ro. THEN everything changed. He told me rads are not an option for me but a must. That I should not get immediate reconstruction, meaning implants not an option but could do flap much later which is one thing I had decided I didn't want. Because delaying the rads for healing would be too risky. I have been so willing to do whatever I need to to fight this. This new news just makes me sad and hopeless. The list of side effects also sent me over the edge. Lungs, heart, le, my skin is so sensitive anyway, I know it would never recover. Plus he said my tumor feels larger to him than what the scans showed, it had already grown .5 cm in 2 weeks between sonogram and ct scan. I know I should not put thoughts of being boobless with bad skin and a bad heart and lungs ahead of being alive, but I guess I'm just having a pity party right now. I'm glad to see at least that I'm not the only one to question rads as an option. How will I know what the right decision is?
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I just finished 16/16, I am in bad shape. Pain, swelling, blister, peeling, skin has split open and I have black/brown patches extending to my back. This for me has been the worst part physically. I cried alot since my DX but this time it is because I am in real pain. Do I regret it? No not yet, if it prevents me and my family from enduring this again its worth it. If it does return then I will curse that damn machine for the rest of my life.
Decisions are hard. Many have no severe reactions, I was not scared to do them because I figured the odds were with me. If I have no lung etc troubles and its all cosmetic and will heal its a small price to pay to keep it away forever.
Good luck in your choice, bless you.
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No Carolyn we cant because we can see into the future but you make a case for that about the surgeries too. There is no way to know for sure if a lumpectomy was a better choice than a MX, whether Tamox is better than Arimidex, and on and on. Having RADS to me is an insurance policy. Just like you have one for your car in case....same rule applies here. Its what is being offered to help prevent a recurrence. It seems a small price to pay to me to have radiation treatments to help in the fight to prevent the bc from coming back. There are no guarantees with anything any of us are doing or having done; its a crap shoot with early stage bc patients having better odds but thats all it is. I have seen early stage patients have their bc come back and latter stage ones not come back after 10 years. You are adamant about doing RADS - sorry about your sister in law and no you wont ever know if RADS would have saved her life. She really just made a point for the other side. So you wouldnt have had RADS if she had had them and still passed away...None of us are 100% sure of our choices but we go with the best information available to us and dont second guess ourselves. It is not a one size fits all at all. I dont regret my decision to have them despite the fear of the scarred lungs and the fact my left breast was affected right over the heart. Time will tell if I guessed right. Diane
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With a 6 1/2 cm BC that only minimally responded to neoadjuvant chemo, I had a mastectomy and was not offered a choice about RT. I had 3 positive lymph nodes and was spared RT to my axilla (the cut-off point is 4 lymph nodes). I was happy to have my chest wall radiated. Reoccurences in the chest wall are more difficult to treat than those in the breast. RT reduces the risk of local reoccurence by 50%. Knowing that persuaded me that the SEs would be worth it- for me. I had dark red skin with tenderness in the treated area at the end of rads, but nothing that Tylenol would not relieve. The worst part was the fatigue. I was exhausted, but I decided that the fatigue lasted for such a short period -only for one month- that it was worth it if having RT meant improving the chances that I would never have to hear that I had BC again. I have some tightness and lymphedema in my right (treated) breast, but it is still worth it.
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Hello SccS and friends
An interesting study appeared in The Lancet:
The interpretation at the end of the study observes: 'After breast-conserving surgery, radiotherapy to the conserved breast halves the rate at which the disease recurs and reduces the breast cancer death rate by about a sixth. These proportional benefits vary little between different groups of women'.
I had a mastectomy and do not regret having rads, even with no LVI or blood invasion.
Best wishes
Alice
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I was treated at a large metropolitan cancer hospital. I had my breast surgery there, and rads treatment. Do you live near a large city? I had prone position, and only 16 tx's, no boosts. Other protocols are available, you just have to research. For me this was the recommendation. What is the point of seeking out a renowned cancer center if I am not going to follow their advice? Today I am 1wk post rads, no problems.
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I do regret my radiation in 2010, 7 weeks following lumpectomy for a stage dcis. the dcis had returned less than 3 yeras later, so i am mad it did not protect me for all the hell it was, burns/fatigue. I had a reoccurance, double masectomy with tissue expanders for reconstruction on feb 2013. My radiated side is doing terrible, pain, tightness, rock hard muscle/skin and limited mobility from rads. I do wish the Docs had been more honest about the long term side effects of radiation-the gift that keeps on giving!
Nancy
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Curious about what your doctor had recommended
my doctor recommends it--have only one more chemo left and then will go on hormonal therpy
i really don't want radation, but it seems everyone says--do all you can so you be sorry later
I also have rheu arthit and don't know how that will affect that
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Hi MDS
In the UK, we have a body called NICE that reviews all the medical literature in the proceeding years and makes recommendations for oncs to follow. The oncs ultimately make the decision re treatment, I believe, however.
According to NICE, all grade 3 tumours near the chest wall need radiation. Mine was near the chest wall, HER2+ and had a comedo necrosis pattern - three high-risk factors.
I guess that's why radiation (and the rest) was recommended.
Wishing you well with your decision!
Alice
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I am probably the odd gal out here, but I regret having my radiation. I only regret it though because I wasn't fully informed of the risks for future healing issues. I had radiation on the left side in 2008. Now, five years later, I have had a recurrence on the same side, with bone mets. I have undergone a bilateral mastectomy with tissue expander reconstruction. Nineteen days later, I had to have the TE's removed because I was not healing as we had hoped. This was due to the radiation effects from 5 years earlier. Instead of the doctors telling patients that the survival rate for lumpectomy with radiation is the same as for mastectomy, they should also educate their patients on what the radiation effects are in the long run so we truly can make an educated decision. When just given the survival rate comparison info, who wouldn't choose the lesser of the two surgeries? Now, I am dealing with having no breasts and having to wait a minimum of 6 months before we can attempt any further reconstruction. Had I known in 2008, I would have opted for the mastectomy and reconstruction then and avoided all of this. This is depressing, plus it put me at greater risk because I had to undergo general anesthesia a second time and being so close to the first surgery is not an ideal way to do things.
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Hi kimbo,
I don't think you are the odd gal (who wouldn't regret it in your position?) out but you do make a good point about the importance of being fully informed before undergoing any medical procedure or treatment. There are clear risks with rads as there are to all of our treatments. We all have to weigh risk vs reward and remember that there are no guarantees. I am so sorry to hear that you've had such a rough time and hope it gets better for you.
Caryn -
i am so squimish... these rad stories are making me queasy...
question...
i have two lumpectomies, one on each breast... it just dawned on me that i will need radiation on both breast.
does this increase se's? will i be twice as tired?
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Hey Sweet Caroline, our diagnosis is similar except I had 7 pos nodes. My tumor responded to neoadjuvant but the nodes hardly at all. That scares me to death! I have expander in now and will begin radiation in about 3 weeks after expansion is complete. Also will be taking tamoxifen. I feel whatever increases the chances of this not coming back are worthwhile.
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I am just about a year out from external radiation. I have no regrets. I can't tell what tiny side effects are residual from the surgery (into the chest wall), and what are from radiation: my one breast is smaller than the other, I have a pretty big scar, I have 4 tiny little tattoos that I don't really like, my nipple is still swollen, and my chest gets super sore sometimes. Radiation was hard, it is every day, you don't feel good a lot of the time, it is an emotional thing to experience. It took longer than I thought it would to feel "normal" -- almost 5-6 months for me. I am sure it is exacerbated if you have had chemo beforehand.
But, for me, it was totally worth it. Today, I am healthy, I am happy, I am still running pretty competitively (I just ran the fastest marathon I had ever run last month - and I have been running for over 10 years, and am 50! took first 50-54 year old by a minute). No regrets at all, just simply grateful ...
I wanted to come on because those of us that are doing well, don't post very often, and for those of you facing these difficult decisions, should hear about some of our good outcome stories too! Best of luck to all of you.
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It only prevents LOCAL recurrence and its distant recurrence that is more dangerous, i regret RADS as its messed me up
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I do not regret it. But I took control of my treatment, and I took steps to repair the damage afterward.
I had a lumpectomy for a non-aggressive mucinous carcinoma and then did a ton of research before meeting with the radiation oncologist. I determined that I would do radiation ONLY in the prone position. I also wanted partial breast radiation. She convinced me to do whole breast radiation, but we did it in the prone position. My heart and lungs were not in the radiation field. I insisted that the sentinel node biopsy site be removed from the field, because the sentinel nodes were negative. We argued, until I stated I was out unless the site was out. Then they agreed that this made logical sense. I also had them use 3D-CRT instead of IMRT to reduce the risk of a second malignancy from distant scatter (http://www.redjournal.org/article/S0360-3016(03)00073-7/abstract).
Because I knew I was not going to take tamoxifen, I waited a minimum amount of time between surgery and radiation -- 4 weeks (http://www.sciencedaily.com/releases/2010/03/100303131701.htm). I had 16 treatments, for a total dose of about 4200. A long-term study showed that this particular regimen was actually better for my particular tumor characteristics and my age (http://www.nejm.org/doi/full/10.1056/NEJMoa0906260). Also, this left me with sufficient headroom that if this ever happens again, I can have another lumpectomy and partial-breast radiation.
I used Boiron calendula cream during radiation, which worked great to prevent any awful skin issues, and had some effects that proved to be temporary. I had a light sunburn that took a long time to fade. And a few months after treatment, my breast became harder. But around then, I got on a complete vitamin, mineral and hormone balancing program with a well-known doctor. My results have been amazing, and my life has been amazing, since then. I have repaired DNA damage, and my breast became soft and normal-colored again. The dark spots that my dermatologist said would only worsen over time, have disappeared.
So, I found that I COULD recover from radiation damage. I didn't know that when I made the choice to have treatment, but I made the decisions I felt were best with the information I had at hand, I was strategic and took control of my health decisions, and I do not regret it.
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No regrets! I weighed the known pros and cons, including potential long-term effects of rads considering I was only in my mid-40's then, and made the best decisions for me (lumpectomy and rads and declined tamoxifen). I requested rads in the prone position because my bc was on the left side and I wanted to further minimize heart exposure (as well as lung exposure). Inner peace is so very important, and with each decision I have made, I never ever look back. That is no way to live in my opinion.
It's been 3+ years since rad treatment ended, and my lobster red and weepy breast by the end healed just fine. Would never know I'd ever had rads, breasts are the same size (except for the divot resulting from the lumpectomy) and skin looks the same.
May you all have the same inner peace as I do, regardless of the treatment plan or what the future may bring.
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