External Full Breast Rad Side Effects/Risks (During & After)

Happy to start you a list but definitely ask your RO to run through them all for you...



Short term: burns, swelling, rash, fatigue



Long term definite: permanent loss of some lung function (varies based on your individual plan), permanent area of fibrosis in lung, rib damage that leaves your ribs likely to break. If on the left side there will be a small area of your heart damaged.



Mid to Long term potential: pneumonitis, lymphedema, ongoing pain, shrinkage of the radiated breast, petechiae (broken blood vessels at skin level), fibrosis of cardiac veins, brachial plexopathy - damage to the brachial plexus causing permanent loss of arm function (more likely with rads to supraclavicular area), leukaemia, other cancers of the breast and chest area.



Hope that helps. I am one that has forgone rads for early stage and am keeping it in my list for if I end up with recurrence or mets. You'll see in my sig though, that I am throwing everything else at it.



Jenn

Hi Hun, I had rads to left side and supraclavicular area.



With that I couldn't swallow or eat for three weeks.

Very tired and could sleep all day.

Moods were up and down.

My skin became red but not broken.

Shoulder became spotty and red.



I did use an oil the night before but not while having the rads.



Now my skin is normal again but I do get terrible pain in my chest and top of my back every evening. I have to remove my bra and that helps a bit.

You are wise to ask questions and investigate all your options and risks/benefits as I see your cancer was very early stage.



I am 15 months post rads and have some fluid buildup in the radiated breast which makes it slightly larger than the other and there is some mild tenderness from time to time. I have had two episodes of 'cellulutis' treated with antibiotics.



I don't mind too much as it is better than the alternatives (cancer or mastectomy) in my opinion.

I need to point out that I am completely all for people evaluating their personal risk tolerance and treatment risk/side effects.  We all have a different tolerance with respect to what risk of recurrence (or more advanced disease for invasive disease) that were are individually able to tolerate.

That said, the actual risk of treatment, especially radiation treatment - but also hormone therapy and even maintainance chemotherapy - varies by individual disease.  So it is VERY important that each of us understand what our risk is for the treatment options we choose (including no treatment).  So, what I was personally suggesting is the NSJ lets her RO get her field and dose calculated so that she can weight her personal risk versus treatment side effects options properly.  My RO showed me the radiation field after my simulation, showed me how much lung was involved, and then calculated what my chance of long term lung involvement would be, many of the women in our May 2012 group had RO's that did the same for them who had their heart in the radiation field.

At the end of the day, NSJ (or any of us) may choose that a proposed treatment has side-effects that are less palatable than the risk of subsquent disease - and that is completely our personal choice.  However, the actually risk - both disease and treatment - is not a "one size fits all" - and is best discussed with our medical team. 

 The conversation here has been most helpful. I fought rads because of the fantastic results of my DCIS lumpectomy and my Van Nuys score but finally gave in after 3 consultations with the RO. My concerns were and still are 99% about the lung/rib/heart after affects. I am 66 and have had pneumonia three times over a 30 yr span and two of them in the last 7 years,  broken ribs  in the late 60s and history of smoking but no damaage has ever showed up on lung X-rays. I learned so much on here so I will make absolutely sure they show me the exact prognosis of lung,etc damage.

So I went for my sim and CT yesterday and keeping my left arm up and in that uncomfortable position was just awful for both the sim and CT scan and I was so relieved when it was all over. When I got home I felt like I had been lifting heavy weights and both arms are still  very sore. They also marked me and put three tats. She told me that I come back next week and when I ask why she said it was for final marking and so forth and I was appalled when she told me I would be in the simulator with my arm like that for about 45 minutes . In total I was in that postion about 20 min yesterday. 45?  OMG!! I  told the very nice and gentle tech that I had serious nerve surgery from hand to elbow on left side a few years ago and just got diagnosed with mild carpal tunnel and shoulder tendonitis on the right side (too much computer!!). She told me she hates to see anyone uncomfortable and suggested I lay 'that way' for a few minutes every day  and to take Motrin or Advil before I come next week. I told her I could take Vicodin and that would help more and she said sure but someone would have to drive me...argh!

Any advice as to how to prepare for this? I thought the stereotactic biopsy was torture..silly me.  The surgery and actual radiation are a piece of cake compared to this prep.

Thanks in advance

Terri

I have been worrying about Heart/rib/lung involvement also. JUst started rads this week and will sure ask my RO to give me a profile  when I see him on Monday.The techs showed me  my xrays when I asked about that, and what I presume are the target lines, but I  haven't had a profile.

Tonight I noticed a small itchy area/rash. I have also been feeling some swelling or enlargement today. I had an underarm seroma after the lumpectomy , but that is mearly gone.Have learned a lot here. Thanks  a lot. Jean

The reason you undergo a 'simulation' prior to receiving radiation is to address all of the issues above and minimise the negative effects of radiation.  And, much of what is listed above is not definite; they are, merely, possibilities and rather rare ones at that.

While it is true that most whole breast radiation has the potential to scar your heart and lungs, a pre-treatment CT scan will measure how deeply in your chest are both organs located.  For most women - myself included - my heart was situated deeply enough in my chest that it was NEVER within range of the beam.  If it had been situated closer to the ribcage, then I would have been taught the "Deep Breath Technique", which pushes your ribcage/breast away from the heart and taking it out of harms' way. 

The risk of developing other cancers from radiation treatment is RARE; less than 1% of women who have had whole breast radiation develop a sarcoma.  That is less than one women in a thousand.  And, I might point out, this is the same risk you have of developing a uterine-related cancer while taking tamoxifen; less than one in a thousand.

If radiation caused all of these issues in all women with breast cancer, it would not be used as a treatment.  Yes.  There are (very small) risks, but the potential benefit - reducing your local recurrence risk to less than 10% in some cases - far outweighs these risks.

Please ... place your "facts" in context.

HI Ladies,

I am new to this forum. I saw my RO today and she explained to me about the Deep Breath technique for moving the heart and lung out of harm's way. I do worry about the effect on the heart and lung and the ribs. Would love to hear more on this discussion about L sided breast radiation. I guess it is a bit like chemotherapy - we just don't know what side effects we are going to have to deal with? Everyone is so different.

Has anyone ever refused radiation? I am triple negative, currently on chemo DD AC/T, then I will do radiation for 20 times. This whole thing scares me a great deal. It is all a risk no matter what decision we make!!

Like ruthbru, I found (left-side) radiation easy after the challenge of chemotherapy.  I received the expected "burn", but it was manageable with the cream prescribed and felt just like a sunburn.  It went away fairly quickly after treatment ended and I have not encountered any "permanent" issues like a smaller, hardened breast or skin discolouration.

Moreoever, before even finishing treatment, I was walking four-times-a-week, five miles at-a-time.  Within a month of completing treatment, I did my first long-distance (i.e., 30 km) bike hike.  No problems with my heart.  No problems with my lungs/breathing.  Completed several "physcial challenges" throughout the summer months with no trouble at all.  The only thing I've noticed is that the skin of my radiated breast is now a bit more sensitive, i.e., a body cream I've used for years with no trouble, now seems to irritate the skin of that breast.  So, I stopped using it and returned to the cream suggested by the radiation oncologist.  Problem solved.

Jenn, your rad doc said that you would definitely lose lung function and get fibrosis, or that the risk is definite? I was checked carefully for lung damage this summer and had none. 

Ruthbru - did you have chemotherapy? Just wondering since you have a grade 3?

Yes, grade 3 is nothing to mess around with. I had 4 rounds of chemo, followed 30 radiation treatments. After the initial denial phase, I became fully commited to doing everything I could the first time around, because I never, ever want to go through all that again!! (Now knocking on wood, which helps too .)

1% is indeed one in 100, but the statistic I spoke of is LESS that 1%...  that is less that 1 woman in 1000.

"...The cumulative incidence of angiosarcoma at 15 years post diagnosis was 0.9 per 1,000 for cases receiving radiation (SE = 0.2) and 0.1 per 1,000 for cases not receiving radiation (SE < 0.1). Overall survival was poor for cases of sarcoma after breast cancer (27-35% at 5 years), but not significantly different between patients receiving or not receiving radiation therapy for their primary breast cancer..."