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All TopicsForum: Radiation Therapy - Before, During and After → Topic: Do you regret receiving radiation treatment?

Topic: Do you regret receiving radiation treatment?

Forum: Radiation Therapy - Before, During and After — What to expect from treatment and ways to cope with side effects.

Posted on: Jan 24, 2013 09:38AM

SccS wrote:

Hi there!

Do you regret receiving radiation treatment for breast cancer considering chronic lungs complications (if any) and benefits of the treatment?

 How many of you got new chronic problems from it? How many clearly benefit from radiation?

Trying to decide whether to do it…

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Jan 24, 2013 09:58AM Nel wrote:

My thought was I am throwing everything I can at cancer!   I have a minor residual cough, but given the alternative, I felt radiation was the way to go for me. I didn't want to look back with coulda shoulda.  That being said, we all need to decide what is best for us as individuals.  

Be well


You can't stop the waves, but you can learn to surf Dx 9/27/2011, IBC, Stage IIIB, ER-/PR-, HER2+ Dx 8/6/2013, IBC, Stage IV, ER-/PR-, HER2+
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Jan 24, 2013 10:00AM edwards750 wrote:

I had 33 RADS treatments following a lumpectomy and no I do not regret it for a second. I did my homework and knew the risks but I also knew what it would likely cost me in the long run with the risk of recurrence. FYI I had the Oncotype test done and my score was 11 which is very low. My cancer was also determined to be non-aggressive and the tumor actually smaller than first thought. This test is pricey but my ONC ordered it primarily because I had only a micromet in my SN. My BS said it would get me chemo. It didnt but only because my ONC ordered the Oncotype test. The Genomic Lab conducts the test on the biology of your tumor and your tumor only. More and more ONCs are going with test to save women from being overtreated. Her words, not mine. The point of this is I yielded to what my ONC said, the homework I had done and the results of the Oncotype test. Personally, I think it is worth the risks to have Rads but it is not my decision - it is your wife's and yours. One piece of advice once you decide dont second guess yourself or look back. Halfway through the treatments I was fatigued and did have redness and some burning but it was all temporary. Havent had a problem sense.

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Jan 24, 2013 10:01AM edwards750 wrote:

that would be since not sense...my bad

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Jan 24, 2013 05:37PM BilateralBeauties wrote:

I had bilateral radiation x33. We're still alive to tell the stories. I have no lung issues. My new motto is Two at a time and doing fine. The t-shirts are on order. I had chemo too for high Oncotype on a 7mm tumor.

Dx 8/23/2011, IDC, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 9/7/2011 Lumpectomy: Left, Right; Lymph node removal: Left, Right, Sentinel Chemotherapy 10/13/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/9/2012 Breast Hormonal Therapy 3/9/2012
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Jan 24, 2013 06:25PM MameMe wrote:

Hi, I am in the process of having to decide about radiation again. It was an unpleasant, tiresome, expensive and inconvenient treatment. I experienced tissue "burns", and some permanent changes to breast tissue. I had pressure in my lungs when taking a deep breath shortly after starting rads, and that happens sometimes still. This time, I have a lower stage tumor, but a higher grade, and I am not sure how to assess benefit. I have believed that her2 negative, er/pr positive tumors at the lower stages and grades are the least likely to cause problems with mets. I almost think those of us with this set of conditions have a diffent disease all together from Her2 positives, or triple negatives, or stage 3 and 4 people.
My inclination is to not do the rads this time. If a way to calculate risk with and without radiation exists, I'd like to see it.
My best to you,

Widespread, low volume mets to eye, lungs, chest wall and bones, dx 4/14/14. "There's gotta be a pony in this s--t somewhere..." Dx 2/2003, IDC, Right, 2cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 12/2012, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Dx 4/4/2014, IDC, Left, Stage IV, metastasized to bone/lungs/other, 0/1 nodes, ER+/PR- Chemotherapy 4/30/2017 Doxil (doxorubicin) Chemotherapy 2/28/2018 Halaven (eribulin) Targeted Therapy Afinitor (everolimus) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Aromasin (exemestane) Chemotherapy Taxol (paclitaxel)
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Jan 25, 2013 12:07AM - edited Jan 26, 2013 11:28PM by SccS

Thanks for input!  It’s my wife I'm talking about here… I must clarify that, if I understand it correctly, for small tumors treated with lumpectomy, they may not radiate chest wall at all. But my wife got a single mastectomy with reconstruction; tumors were huge, many axilla nodes involved and so on… in other words, a nasty situation. So she would get radiation to chest wall, axilla…. the whole  area…  

 So, those of you who mentioned no complications (Nel, edwards750, BilateralBe…) : would you please clarify whether you had lumpectomy and/or whether chest wall were treated?   I mean, I think that makes a difference in chances of chronic complications….  

Your leaning towards not to radiate second time seems logical to me… although I can’t advice. I’d probably didn’t to it second time…. I wish you best !

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Jan 25, 2013 01:16AM dlb823 wrote:

SccS ~ I had a mx.  RT was strongly advised for me by UCLA and a local rad onc based on an unspecified margin (on a bit of trimmed tissue that contained a surprise 1mm bc lesion), plus a positive node with extracapsular extension.  From what I gathered from talking to several rad oncs -- although some RT centers think of bc as "basic bread and butter RT" (a phrase I actually heard when I was shopping for one), I gathered that there can be significant differences between RT centers, and that it pays to find the best one in your area.  RT is not an exact science, and IMO, it's best to go to a place that does a lot of RT for bc, so that you get the kind of expertise that only comes with experience.  My bc was left side, so I was very concerned about potential heart & lung damage.  But those fears, as well as the fear of LE, were totally alleved by a top notch rad onc who was able to explain to me why those things should not concern me based on my body type and other factors about my dx.  

I had 33 tx and no real damage -- just a bit of burning in the very last few days, equivalent to a bad sunburn.  Emu Oil did a great job of protecting my skin.  I went through rads with a support group here on BCO, and none of us had any significant damage or lingering SEs.  Given the same situation, I would absolutely do it again; but after hearing some horror stories from other women, I would definitely make some comparisons, and only do it at a top notch facility, assuming that rad onc can allay any concerns re. permanent damage.  

Good luck to your wife!    Deanna

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Jan 25, 2013 01:45AM Moiralf wrote:

I had mine done in 2008. I had a right side mx and no reconstruction. All nodes removed and 9 out of 13 positive for cancer. Dx was er+pr+ her2-. Grade3 though. Then they discovered I had a met in my spine. My onc said if I didn't want rads I could run the odds of 50/50 of mets to the chest wall. And then they would treat at that point. By the way he was saying I could run that risk and he was ok with it. My RO was of the opinion that doing the rads would reduce my risk to 15% recurrence in the chest. I was and still am of the opinion that anything that reduced my risk was better than having to treat the mets when and if they grow. As my breast care nurse said, they are not pretty if they become skin mets.

I did the rads and had no real SEs. Yes, my skin sun burnt a bit. Used a cream that the rad people advised and no problem with that. Didn't peel and turned a lovely light tanned colour. Only tanned bit I got!!! There was some fatigue towards the end and for a few weeks after but it was only the sort of needing a nap in the afternoon and certainly didn't slow me down much. I had no cough at all and have had no Ses from there in the last 5 years.

I have done more for mets in my spine and hips. I will do more again in the future. For me, rads have done great things for me and any thing that kills cancer and lets me life a full and normal life is fine with me.


PS, got area under armpit done as part of it all and as a SE have no hair growth under that armpit. Take that as a positive Se for me.

Moiralf Dx 11/16/2007, IDC, 3cm, Stage IV, 9/13 nodes, mets, ER+/PR+, HER2-
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Jan 25, 2013 06:26AM - edited Jan 25, 2013 07:52AM by RosesToeses

I'm stage III with extranodal invasion so the rads were extensive, but I had no real SE from my radiation, just a very dark and ugly red color for a few weeks, but no wounds and no pain. For whatever reason I never even had fatigue (unless you count just being plain tired of going everyday for 6 weeks!).

ETA: In answer to your question, no, I don't regret it at all, but even if I'd had some side effects, I still think I would feel the same way.

(age 42 at dx, lived to see 47 and counting!) my blog: mepluscancer.blogspot.com, Xgeva 2/27/14, Lupron 4/10/14 Dx 4/2012, IDC, 3cm, Stage IIIA, Grade 3, 7/9 nodes, ER+/PR+, HER2- Surgery 6/15/2012 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Chemotherapy 7/17/2012 AC + T (Taxol) Radiation Therapy 11/26/2012 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/9/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/27/2014, IDC, Stage IV, metastasized to bone, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 3/23/2014 External: Bone Hormonal Therapy 3/25/2014 Faslodex (fulvestrant) Dx 4/1/2015, IDC, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR+, HER2- Hormonal Therapy 4/1/2015 Femara (letrozole) Targeted Therapy 4/27/2015 Ibrance (palbociclib) Targeted Therapy 10/16/2015 Afinitor (everolimus) Hormonal Therapy 10/26/2015 Aromasin (exemestane) Chemotherapy 12/4/2015 Xeloda (capecitabine) Dx 8/3/2017, IDC, Stage IV, metastasized to bone/liver/lungs Chemotherapy 8/6/2017 Gemzar (gemcitabine), Taxol (paclitaxel) Chemotherapy 11/12/2017 Halaven (eribulin) Dx 11/13/2017, IDC, Stage IV, metastasized to bone/liver/lungs/other, ER+/PR+, HER2-
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Jan 25, 2013 08:06AM Momine wrote:

I had stage III cancer. Radiation was not really discussed as optional. The docs were concerned about possible cells in the nodes in the clavicle and they wanted them zapped for extra security.

I have not had any long-term SEs. I finished rads a year ago approximately. In the summer I had some pretty severe shortness of breath, but after investigation it was concluded that it was not rads damage. I now think it may have been either low magnesium or low B12. With some supplements and better nutrition it passed.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Jan 25, 2013 09:55AM BilateralBeauties wrote:

I had some of the worst loss of tissue during rads that a person could have. I was getting bilateral radiation. I'm very large breasted -- I cup. Most women do not have the tissue loss I experienced. I will say it healed very fast. I had bilateral lumpectomies. I'm not sure I know how to answer the chest wall question. The entire breast was treated on both sides which included a known "clip" of about 10% of the lung on both sides. Years ago they did breast radiation straight on on the 90 degrees, which is why they now know to go on angles and avoid organ damage. Everything in this process can cause other stuff, but cancer is sneaky and it's important to swing with the big bat. Good luck.

Dx 8/23/2011, IDC, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 9/7/2011 Lumpectomy: Left, Right; Lymph node removal: Left, Right, Sentinel Chemotherapy 10/13/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/9/2012 Breast Hormonal Therapy 3/9/2012
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Jan 25, 2013 09:59AM CelineFlower wrote:

Hmm i like the bat theory...

This decision is not an easy one to make...

thank you for sharring all your experiences... it is helping 

I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me! ~Dr. Seuss Dx 8/31/2012, IDC, 3cm, Stage IIA, Grade 2, ER+/PR+, HER2- Dx 9/17/2012, LCIS
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Jan 25, 2013 11:27AM Linda-n3 wrote:

Remember that rads are to reduce local/regional recurrence. It does not really reduce mets. There was some controversy as to whether it prolongs life, but if you have local/regional recurrence, it seems that mets and lower survival rate would be logical assumption. I chose NOT to do rads, and have had 3 local recurrences, and am waiting to see if I have mets. My fear prevented me from doing rads, and it may have cost me dearly. Then again, I could have done rads and STILL have had recurrences, there is no way to know for sure. Would I choose rads now, knowing what I know? I don't know for sure. But I am mostly at peace with myself for the moment.

It is a tough decision. Listen to your inner voice. Don't let fear prevent you from making the right choice FOR YOU.

Linda - "Loving to learn; learning to love." "Gratitude leads to joy. Joy leads to prayer. Prayer leads to gratitude." "Oh, what fresh new hell is this???" - Sheldon Cooper, The Big Bang Theory Dx 7/14/2010, IDC, 3cm, Stage IIIC, Grade 2, 19/23 nodes, ER+/PR-, HER2- Dx 8/2011, IDC, Stage IIIC Dx 9/2012, IDC, Stage IIIC Dx 12/2012, IDC, Stage IV
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Jan 25, 2013 12:44PM JulieMI wrote:

Up till the day before my appointment with RO, I was 100% determined to throw everything at this BC.  Then I found out on the forum that there will be lung scaring to live with even though in most cases there won't be symptom.  The fear of lung damage made me hesitate about Radiation.  Both parents had lung cancer, mom died from it.  I don't want any lung scaring to increase chance of lung cancer.  I was very relieved that My RO recommended no radiation.  I took her recommendation and ran.  Never bothered to get a second opinion.

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Jan 25, 2013 01:23PM - edited Jan 25, 2013 01:23PM by SelenaWolf

I had a lumpectomy + radiation.  I had no choice about the radiation because I was having a lumpectomy.  The two go hand-in-hand.  The only side effect I had was during treatment was tissue burn.  I have experienced no heart problems, no lung problems, and no lymphadema (I had underarm radiation, as well).  Before my radiation treatment was finished, I was already walking five miles a couple of times a week.  During the summer after treatment, I was walking twenty miles a week, five miles at a stretch and cycling, at least, thirty kilometres a week.  I have experienced no long-term effects as of yet and I am still very, very active.

I have no regrets.  It was much, much easier than chemotherapy.

"... good girls never made history ..."
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Jan 26, 2013 11:27PM SccS wrote:

Thank you all, your opinions do matter!

BilateralBe…, You wrote:      “Years ago they did breast radiation straight on on the 90 degrees, which is why they now know to go on angles and avoid organ damage.”

We were told that my wife can’t avoid straight 90 degrees angle radiation because they will radiate chest wall, as well as an area close to trachea. The RO told us that a small angle (to avoid lungs damage) is only an option for patients who had a lumpectomy and don’t need chest wall to be treated – such patients would receive radiation around lumpectomy area only. But those like my wife, who had mastectomy and/or many lymph nodes involved etc… - those people receive a 90 degree angle and some damage to lung is inevitable.  That’s why I think it’s important to differentiate between chest wall and lumpectomy only. I understand that the risk would fluctuate greatly basing on that.

The RO told us that about 1/3 of the area of right lung will receive direct 90 to body degree radiation!… And yet, the RO is telling us that risk of chronic lung complications (asthma, pneumonia) is 10% in our case. Can we believe her??? Are they downplaying the risk?  

Actually, my wife had just agreed to radiate.. although reluctantly. But we’re not so sure if it’s a super-great decision… We still would like to get more opinions…

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Jan 27, 2013 07:23PM purple32 wrote:

Radiation was not really discussed as optional.

Neither was mine, but with lung disease I skipped it.

I have LE now and did NOT have rads ( I  cant stand the fact ppl think it somes from rads ) and only 2 nodes out/  LX with SNB.

Good Luck.

Lymphedema on LEFT. NO radiation. 2 clean nodes. purple32. Hope is our light ... in the night. Dx 3/2012, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 5/1/2012 Lumpectomy: Left
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Jan 30, 2013 07:52PM Sharon67 wrote:

I had a double mast. back in 07'. DCIS stage 3. Nodes were clear, I decided after the dr. told me that the reconcerence rate was 5-8% either way and with RADS it was 5-8%. I never regret not receiving Rads. This is now 5 years later:)

Dx 9/9/2007, DCIS, 4cm, Stage 0, Grade 3, 0/7 nodes, ER+/PR+, HER2-
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Jan 31, 2013 11:13AM april485 wrote:

I don't have all of my information yet cause I was just diagnosed yesterday and so I don't even know all of the pathology of my BC but, I am a smoker and have been for many years and it is my left breast so I am really scared of rads hitting my lungs. I know that there are also worries of heart damage on the left side so I am truly petrified of having rads and I am also petrified of NOT having rads.

Sigh...this decision may be the hardest one of all of them. Since I have not even had a lumpectomy yet, I don't know exactly what I am dealing with. It "looks like" DCIS, but my understanding is that until final path report, I won't know if there is any IDC lurking in or around the lesion.

This stuff is all so new to me and so scary! I am following the thread to see how many have skipped radiation and have fared well by doing so. Don't know my ocnotype score either so will have to try annd find that information out first? Is that right? If a low score then I will not have to have radiation perhaps?

Anyone who can shed some light on this, feel free! Thanks!

"Fear has been a huge dictator in my life - so I am trying to stage a coup!" ~ a friend Dx 1/30/2013, DCIS, <1cm, Stage 0, Grade 2, ER+/PR+ Surgery 2/21/2013 Lumpectomy: Left Surgery 3/11/2013 Lumpectomy: Left Radiation Therapy 4/22/2013 3DCRT: Breast Hormonal Therapy 6/20/2013 Aromasin (exemestane) Hormonal Therapy 1/2/2016 Femara (letrozole)
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Jan 31, 2013 11:18AM BilateralBeauties wrote:

Welcome to day one of the journey April. Big deep breath, you will get through. Generally, if you have a lumpectomy, radiation is required. With Mastecomy generally there is no radiation. I had bilateral radiation and am doing fine. Don't jump too far ahead. Some tumors require mastectomy... I'm not sure if they do Oncotype for DCIS. They would for early stage IDC if they find that. Good luck and check back with us on how you're doing.

Dx 8/23/2011, IDC, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 9/7/2011 Lumpectomy: Left, Right; Lymph node removal: Left, Right, Sentinel Chemotherapy 10/13/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/9/2012 Breast Hormonal Therapy 3/9/2012
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Jan 31, 2013 11:31AM NatsFan wrote:

On the flip side of your question, I declined rads 5 years ago and have no regrets. I was in the grey area, and after consulting with 2 rad oncs and reading a lot in medical journals, I declined.  This is what I just posted on the thread entitled Electing to do or not do radiation if in "grey area:

I also fell into a grey area - one positive node but with no extra nodal extension, Grade 3 tumor, excellent margins.  There was no question about chemo - I definitely had to do that one.  Rads was different - I was in that dreaded grey area.  I went to 2 consults with different rad oncs, and also did a lot of research on my own in medical journals. I was discussing all this with the one rad onc I really liked and asked if she could give me some figures.  She told me that of women with my same status, 90% are radiated for no reason.  85% will not recur, rads or no.  5% will recur, rads or no.  Therefore, there was only a 10% chance that rads would benefit me. 

After weighing all the pros and cons, the risks and benefits, I declined rads.  One rad onc was very distressed and told me that I was making a mistake to decline rads.  But this was also the same rad onc that never mentioned lympedema as a possible side effect of rads, and who wanted to do not only the chest and axilliary area, but also the nodes around the breastbone even though my tumor was on the outside upper quadrant, so I really didn't have faith in his pronouncements.  The rad onc I liked said she was comfortable with whatever decision I made - she'd be comfortable if I opted for rads and comfortable if I declined.  That was 5 years ago, and I'm still very comfortable with the decision I made.  But each of us must make our own decisions, and gauge our own tolerance for risk v. benefit.  What was the right decision for me might be the wrong decision for someone else.

I would get consults with a couple of rad oncs.  Also, do research in credible sources, like medical journals.  Then take a break of a couple of weeks (if time allows) and decide to not decide during that time.  Set a date a few weeks into the future and tell yourself that you will not make a decision until that date.  That will give your unconscious time to process everything you've learned.  Make your decision on that chosen date.  Revisit that decision in a week.  If your gut is telling you that it's the right decision, then it's the right decision for you.  In the end, all you can do is make the best decision you can with the info you have on hand.  Once you've made the decision, don't look back.  You've done all you can. 


Mary Dx 12/31/2007, IDC, 2cm, Stage IIB, Grade 3, 1/15 nodes, ER+/PR+, HER2-
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Jan 31, 2013 11:48AM claireinaz wrote:

No regrets. I wanted to give myself every percentage of survival--even if it was 1%, because of my 6/11 node status. I think i might have a bit of radiation induced bronchitis from time to time, but it doesn't slow me down one bit.  Still hike, bike, go to bikram yoga regularly, lift weights, etc.

Considering the latest claim about survival rates for those who had lumpectomy (me) and rads (me) vs. bmx and no rads (although I'm going through with the bmx in a few months) I'm glad I had radiation.

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Jan 31, 2013 12:09PM dogsandjogs wrote:

I did not have rads even though I had a lumpectomy. My reasons were: part of my lung would be damaged, the bottom part of my heart would be in the radiation field, possibility of rib breakage. only 3% benefit.

But, I am over 70, have severe ostoporosis, and atrial fibrillation so was very worried about the heart and ribs. I am also a runner so worried about the lung damage.

Dx 11/1982, IDC, <1cm, Stage I, Grade 2, 0/17 nodes Surgery 11/17/1982 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Nipple reconstruction Dx 11/15/2010, IDC, <1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+ Surgery 2/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Jan 31, 2013 12:18PM edwards750 wrote:

Sure. I had a lumpectomy and then a follow up surgery to even the margins plus the RADs treatments.

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Jan 31, 2013 03:06PM jabal wrote:

You know this decision is so darn hard.  Saw my RADs Dr today she basically told me I had to have rads for 35 weeks because I smoke she could not cut it down.  The lung damage is a reality if I have them.  She told me the percentage of women she has seen over the last 30 years and those without rads mostly have a reoccurance and then it is much worse and some times too late.  Very Grim....I have 12 days until I start my first treatment so I just don't know what to do.  I do believe in my heart that there are bad cells in my breast just waiting to develop into cancer.  I had one small tumor and a very very small one that had branched off from that one and started to grow.  I suppose I could have a masectomy instead but then I have that darn single positive node they took out to worry about but chemo was rejected because of my reoccurance rate onco test of 18.

Dx 12/11/2012, IDC, <1cm, Stage IIA, Grade 1, 1/1 nodes, ER+/PR+, HER2-
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Feb 1, 2013 10:07AM BilateralBeauties wrote:

I'm sure that's 35 days of rads. It's DAYS. You will do fine. I know it feels like weeks right now, but check back with us and you'll be through it in no time.

Dx 8/23/2011, IDC, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 9/7/2011 Lumpectomy: Left, Right; Lymph node removal: Left, Right, Sentinel Chemotherapy 10/13/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/9/2012 Breast Hormonal Therapy 3/9/2012
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Mar 4, 2013 02:12PM BeezusComplex wrote:

I had bilateral mastectomy a year ago, but did neoadjuvant chemotherapy (I only had BC on right side, but tested positive for BRCA2 so had prophylactic mastectomy on left side).  When I was first diagnosed, my tumor was over 1 cm and 3 lymph nodes were positive for cancer via biopsy and MRI.  Based on that information, my doctors - who worked very much as a team - decided that I should have radiation.  Now I question whether that was the right decision, because the chemo and targeted therapy (herceptin) were so effective for me that my tumor was completely gone from my breast and only one lymph node had a 2mm foci remaining.  The way that radiation treatment is decided, as it was explained to me, is according to the size of the tumor and if lymph nodes are involved.  My mastecomy surgeon told me that radiation is advised in these circumstances because one BC cell left behind could affect the skin, and if the skin were affected with BC, there is no cure.  Ask your doctor if this information is correct, but I'm fairly certain this is what I was told.  This is the only reason that I decided to go ahead with radiation - but my RO told me that her decision was based on the research as it applied to my tumor size at the time of diagnosis.  She told me that in 5 years, the research may be available for women with cases such as mine, but that as of now, there hasn't been enough research done to offer a better course for treatment.  

I haven't been through the reconstruction process yet, and I tolerated radiation very well - except for where the skin is now stuck to the fascia underneath.  That is aggravating, but a huge part of that area will be removed when I have DIEP flap in a few months.

Dx 8/27/2011, 1cm, Stage IIB, 1/35 nodes, ER+/PR+, HER2+ Targeted Therapy 9/15/2011 Herceptin (trastuzumab) Chemotherapy 9/15/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 2/6/2012 Mastectomy: Left, Right; Prophylactic ovary removal Radiation Therapy 3/23/2012 Breast, Lymph nodes Hormonal Therapy 6/15/2012 Arimidex (anastrozole)
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Mar 16, 2013 04:11AM - edited Mar 16, 2013 04:14AM by mmgrrrl

I am at 11/30 sessions so far. The first step will be a planning CT scan used to determine where to treat you with the goal of minimizing internal organ impact. I asked my radiation oncologist about my treatment area and was able to see 3D images of the treatment area and targeted levels of radiation before I started, which helped me make my decision. While a portion of my lung is impacted, I know how much/little it is and the risks involved. Without radiation my RO said chance of reoccurrence was 1-2% per year, i.e. in 20 years the chance of reoccurrence would be 20-40%. With radiation, my lifetime chance is 5-10%. I prefer those odds.

Dx 6/2012, DCIS, Stage 0, 0/0 nodes Surgery 6/14/2012 Lumpectomy: Right Surgery 12/12/2012 Lumpectomy: Right Surgery 1/11/2013 Lumpectomy: Right Radiation Therapy 2/27/2013 Breast
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Mar 16, 2013 09:20AM momof3boys wrote:

Even though I had a BMX, I did do radiation. I got three opinions from RO's (after having my PS and MO tell me that I didn't need radiation, but, was entitled to an opinion from an RO). We were all surprised when all 3 recommended radiation. Even though I had a BMX (my choice), great margins, no nodal involvement, no LVI, the deciding factor was the size of my tumor (just over 4cm). All three said that the most likely place for a local recurrence was the incisional scar. I had that radiated and my chest wall (right side). According to the RO I chose, it brought down my local recurrence rate down from 15% over ten years to about 5%. I made it thru fine....just fatigued by the end. The facility and the people were great. I know a lot of post talk about dealing with a local recurrence in the future if they have to, and decline radiation, which is fine. Everyone needs to do what they're comfortable with. For me, when I see that, I always wonder..."how do you know that specific moment in time before a local recurrence is discovered that a local recurrence progresses into mets?" idk.. I know no one knows, but I'm relieved that I went thru with rads, and thrilled to reduce my local recurrence rate by as much as 10%.

BMX w TE reconstruction 11/11/11, 4 TC, 3/12, 25 Rads 5/12 Tamoxifin 6/12, Prophalactic hysterectomy 12/18/12, Oncotype 16 Dx 10/14/2011, ILC, 4cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Mar 16, 2013 09:35AM fredntan wrote:

I didn't have choice. glad I had everything thrown at this cancer. I'll take heart disease over BC any day. I'm 46. I had some shortness of breath right after rads. I think it was combo of my anxiety and lungs being mad at me. It resolved shortly there after.

do whatever it takes to make sure the bc is gone. I have no side effects from anything-maybe little pain/soreness from my mastectomy.

find a RO you are comfortable with and just do it

MBC bone mets, afinitor,aromasin,xgeva Dx 8/3/2011, IDC, 2cm, Stage IIIA, Grade 2, 13/17 nodes, ER+/PR+, HER2- Surgery 9/9/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 3/29/2012 Breast, Lymph nodes Surgery 10/8/2012 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Surgery 4/3/2013 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Dx 10/2013, Stage IV, mets Chemotherapy 11/20/2013 Abraxane (albumin-bound or nab-paclitaxel), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Hormonal Therapy

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