Anyone on Here a few years out from doing Radiation treatments?

kec1972

I'm due to start radiation in February and am looking to hear from women who are 5 or more years out from having treatments. I'd like to know if you're experiencing any breathing/heart side effects? My rads will be to my left breast so I am deeply concerned about heart/lung involvement. Thanks, Karen

muska

I am almost five years since completion of radiation treatments (right side, not left.) So far no breathing or heart issues. There was some lung inflammation observed on CT scan about five or six months post radiation that I did not feel and it resolved by itself.

keepthefaith

I am almost 5 yrs post rads TX. I have had no SE's that I know of . Rt side. Maybe you should discuss with your medical team, including the Radiologist, if you have questions or concerns. Treatments carry a risk. They can be more concerning If you have a family history of heart or lung issues, pre-existing conditions, etc. You may have options with your recommended radiation treatment .You can always seek a second opinion also. Best wishes.

Spookiesmom

7 years out, 28 rads, 5 boosts. Left side. No problems.

Hopeful82014

I'm 3.5 years out from left-sided treatment (35 including boosts). I was quite concerned about damage to heart/lung. My heart fell completely outside of the treatment area - something I didn't even realize was possible. It's also feasible to do a breath-hold technique or treatment in a prone position - definitely talk w/your RO to understand your particular situation.

I do have some lung scarring. It's usually not an issue although I've noticed that my lung capacity seems to be affected by colder weather and irritants such as wood smoke.

None of these treatments are without drawbacks, unfortunately. In my case, RT would have been required no matter what due to location of the tumor; given how close to the chest wall it was, I was glad RT was available and tolerable.

Again, I'd strongly encourage you to explore your concerns with your RO - and get a 2nd opinion if needed.

AliceBastable

The way the radiologist explained it to me when I questioned about the one going through my back to the front, the beams are broken down to create a curve to go around the heart and lungs. Have you ever seen string or wire art? It's very similar, and it's why it takes about a week between the set-up and the first session; the radiology team has to plot out your specific coordinates and get them programmed in to the system. It's certainly not random point and shoot! Even the positioning on the table is calibrated to exact measurements, which is where the markers or tattoos come into play.

Cowgirl13

I finished radiation 10 years ago and all is well. My tumor was at 2 o'clock, left breast.

kec1972

Cowgirl, that is exactly where mine is(was). 2 o’clock position, left breast, 7 cm from the nipple. Glad to hear you are doing great

voraciousreader

9 years out. Left side 6 o’clock. Aside from arthritis, I am fine. That said, I recall the radiologist mentioning he had a lot of calibrating to do to avoid my heart and lungs.

Kec....as I said earlier on another thread, talk with your radiologist and perhaps, get a second opinion if you have concerns. While I think it is healthy to have some skepticism about radiation, whether it be targeted or whole breast radiation, at some point, I think it is important to have trust in your team, so you can be at peace with your decisions.

One of the things I learned on this journey was that I could never, ever, know as much as I wanted and needed to know to make an informed treatment decision. That was the most difficult thing about this journey that I learned about myself.

Before this journey began, being a voracious reader, always helped me make informed decisions. But this journey taught me something. And, that is, that no matter how much I knew and ultimately learned, would NEVER substitute for the amount of EXPERIENCE and knowledge my team had when it came to MY situation. I realized right then and there that I needed to let go. I needed to let go of trying to gain as much knowledge as I could.i needed to let go of being in control. And guess what? Letting go of being in control and letting other people, who had more experience and knowledge than i could ever gain in such a short period of time, was refreshing!

And that journey has made some other journeys a lot easier for me. Whether it be as simple as choosing something to eat from a menu and asking the server what they recommend and choosing their recommendation or choosing medical or legal advice, my life has become less stressful and is now more vibrant and as I said earlier, more refreshing! No more reading until my eyes are bleary and my nerves are shot. My brain is no longer bloated. Once I trust the person in front of me, I am DELIGHTED that they can decide something for me.

I know cancer is scary. But so is living. Each day, believe it or not, we make tens of thousands of decisions. That’s right! We make tens of thousands of decisions. The voracious reader that I am, read that in a neuroscience book. Surely, some of those decisions are tiny ones and some are humongous. However, how they affect the brain is quite similar, if not the same. All those decisions make us do something, even if it is nothing at all. So, I now know that ALL of my decisions lead to some form of action. I feel better when IACTIVELY decide to let others make decisions for me!

So, gather whatever info it is that you need to make you feel better and informed. And then, TRY to let the heavy lifters, that is your medical team, do the heavy lifting! Perhaps then, this journey and all future journeys will be easier....

ruthbru

12 years out, 33 zaps, left side, no problems.

kec1972

thank you all for the encouragement! Hugs, Kare

BrooksideVT

Your R/O will tell you directly and clearly if any part of your lungs or heart will need to be in the treatment field. As AliceBastable explained above, a plan will be pepared that shows exactly where the rays go, and do not go.

I am six years out (right side). My R/O told me that a tiny slice of my lung would be in the field. She explained that this was not avoidable and woud be highly unlikely to cause any problems. I have noticed absolutely no issues. More importantly, x-rays and CT scans I've had for other reasons (including one a few months ago) have shown absolutely no scarring resulted from the treatment. Do keep in mind that the reason rads is an appropriate treatment is that, generally, it clobbers the weak cancer cells, but normal cells tolerate the treatment.

Claire_in_Seattle

Hi Karen,

Thought I would chime in.

Nine years out, I am just fine. I do endurance events, and trust me, I would have noticed cycling over 50 miles last year in 100 degree heat last year if anything had been amiss. (Last 50 miles of the Seattle-to-Portland Bicycle Classic.) I am headed out for 4 days of Nordic skiing in 3 weeks.

At this point, I exercise as much to remain fit and strong for the rest of my life as for the survival benefit. 

Just think, you will be done with everything by the time spring arrives. And then, you have the rest of a fabulous life to look forward to. Really!!!

Good luck!!! I personally work on the rewards system. So plan on something super-special for yourself to celebrate when done! - Claire

kec1972

Hi Claire! That's awesome about how you do all those endurance events..That is very encouraging to hear. I work as an exercise physiologist, so I love to work out as well, I think that's what I'm most fearful of, not being able to work out as hard. So nice to hear reassurances from everyone. Hugs, Karen

Anonymous

voraciousreader, Bravo! Well said! Thank you!

"Before this journey began, being a voracious reader, always helped me make informed decisions. But this journey taught me something. And, that is, that no matter how much I knew and ultimately learned, would NEVER substitute for the amount of EXPERIENCE and knowledge my team had when it came to MY situation. I realized right then and there that I needed to let go. I needed to let go of trying to gain as much knowledge as I could.i needed to let go of being in control. And guess what? Letting go of being in control and letting other people, who had more experience and knowledge than i could ever gain in such a short period of time, was refreshing!"

ruthbru

Kec, come join Claire and me on 'The Lets Post Our Daily Exercise' thread on the Fitness Forum. There's a great group of ladies at all stages of treatment (and every kind of treatment) and beyond. What you'll find is, that with both time and work, you can not only get back to your pre-diagnosis fitness level, but you can end up even healthier and more active than you've ever been.

kmart

I had chemo & radiation 19 yrs ago. I have had no issues from the radiation in the yrs since. During the radiation my breast got a little red, but no pain. Doing radiation is a good thing, as it increases your chances of beating this horrible disease

voraciousreader

view...

edwards750

I had radiation 7 years ago and so far, so good. I had just a little redness too and some fatigue but nothing other than that. They are extra careful to radiate only the affected areas but I also know lung scarring, etc can show up years later.

Diane

Joytxs

Some of you mention that you had little to no SEs during radiation. How is that possible???? I've had 24 RADs and my skin is black, brown, red, blistered and peeling. I've been using aloe, radiation cream, aquaphor and now silvadene. I have an olive complexion and tan easily.

voraciousreader

joy...At first I had burning when applying the cream. I was told to discontinue it and from that day on, I had no other issues whatsoever. I asked the team what that was all about and they said there is simply no way of knowing who will have side effects and who won’t. Bottom line, maybe less is more. Check with your team.

With respect to fatigue...I am an avid walker. I didn’t walk as much during treatment. However, I did walk...even when I was a little tired. I felt the walking improved my energy levels AND made it easier to resume my regular walking schedule once I completed my treatment.

Hope you feel better soon

GG27

Joy, I had no lasting effects from radiation, but my skin burned terrible. It was black, peeling, burnt, you name it, I had it. I was prescribed Silvadene which helped alot. I did saline compresses every single day which gave a cooling effect. I'm sorry you're going through this, it was for me, way worse than chemo. But 9 years later you would never know I'd had it.

cimgraph

hi Joy, I am 2 1/2 years passed radiation treatments. Mine was left breast 5 o’clock position. I had the treatments in the breath hold, prone position. Not all patients are eligible for this position.This technique prevents heart and lung involvement. I had some redness and inflammation, tiredness during treatments, but not too bad. I do experience some skin tenderness still occasionally, in fact, just recently. It always passes. I use a numbing cream and wear non restrictive sport bras and clothes when it flares up. You can do this! Carolyn

kec1972

Hello to all you lovely ladies, thanks so much for sharing your experiences. I am due to start radiation in a couple of weeks, and I am petrified of it. Reading all your replies makes me feel a little bit better. Thank you so much for taking the time. Hugs, Karen

trinigirl50

Hi Kec1972

I had 25 rads left breast (whole breast and armpit). My breast was fine for first two weeks. Third week it went red, fourth and fifth week it went deep mahogany brown. I was not in pain, and I used special radiation cream (can't remember name) after every session immediately, and then again at night. I was careful to only use water (no soap) on the area, and to gently pat it dry. No bras either, nothing that would irritate the area.

Unfortunately my skin did react, in that it tightened significantly, so that my left breast is quite a bit higher than my right. My skin mainly went back to normal colour but with small patches of darker pigment. I also have small patchwork of red capillary looking marks underneath the breast. My doctor says that is due to radiation. None of these marks or slight discolouring are particularly noticeable. But my skin is tight and my breast is harder than my other non radiated breast. Not trying to frighten you but the tightening is a possibility. Having said that, my friend did same treatment as I did and 9 years later has absolutely no signs that she ever did radiation. Neither of us suffer from any breathing issues or heart problems.

H8BC

Hi All,

Thank you all for sharing your experiences. I was fine the first 2 weeks, now all of a sudden I’m super red and and upper chest itches like crazy ... still have 12 to go, but I’ll get through. Nice to know there light at the end of this tunnel - thank you all. ~Kay

Rav

Hello to all,

Thank you all for sharing your past experiences. I will be starting radiation (breast, chest all, lymph nodes) in a couple of days and reading your replies made me feel better. I am looking forward to enjoying blue skies after this storm! Thanks a lot. Hugs to all.

CaliKelly

Hi, I had radiation about 2 years ago, and my experience with it was the least painful of all the treatments. I usually went right to the gym afterwards.My skin is very fair and all I got was like a bad sunburn. I used a cream called Miaderm, developed by radiation oncologist. It really helped! Only scabby spot was right over my clavicle. Healed right away when treatment ended. Look for the Miaderm, it worked great.

Vivian4

Keepthefaith,

Hello. I will start my rads in a few days. I have serious concerns about the dosage and length of my proposed treatment. Your dx is as exactly as mine. Do you mind sharing with me the information about the length of your radiation therapy and its dosage? How many sessions of Rads did you receive and what was the dosage? My doc proposes 33 sessions. The dosage for the first 28 will be 180, and last 5 will be 200. I feel it is an overkill since I already had chemo, my tumor was small and there was no node involvement. Thank you for your reply.

Runrcrb

Vivian4 - I had radiation 2 years ago. 33 treatments; the first 28 were three shots each, the last 5 were targeted to my mastectomy scar. I trusted my medical team, having met with surgeons, medical and radiation oncologists several times prior to beginning any treatment. If you don't trust your treatment plan, I recommend that you delay until you have your questions answered and you are comfortable with your plan of care. Good luck

kec1972

vivian4, our diagnoses sound similar. My RO suggested for me pretty much the same radiation treatment. I feel like it's overkill as well, but im already 4 weeks out from my surgery and I didn't not know if I have time to seek out another opinion. Is there a timeframe that rads is supposed to start in post lumpectomy? I'm already looking at 6 weeks.

Also Vivian I’m wondering why you needed chemo with no node involvement? My MO said I wouldn’t need it.