Wish I had never,never done rads, DEEP REGRETS

ChiSandy, Glad to hear nothing serious was found. I hope it DOESNT get worse before it gets better. Have you strained muscles before? I'm curious based on the earlier suggestions from your PCP about the cause of your pain ("bad weightlifting technique"

I am so sorry for all of you who have had such a terrible experience with RT. As horrifying as your side effects are, I find your treatment and care by the medical community to be appalling..

Being diagnosed with breast cancer at 36, is to date, the worst experience of my life. For that reason I would not tolerate poor or incompetent care. I feel so blessed for my cancer team.

I want to share my experience to help,women coming to this board for answers or reasssurance about their ongoing therapies. In contrast to many of you here, my experience has been nothing short of exceptional. I'm halfway through my radiation treatment. My breast is hot pink, itchy, swollen and sore. My menstrual cycle has ceased (an unexplainable and unexpected side effect) and most days I'm pretty tired. BUT, my team is with me every step of the way.

My initial consult with the doctor was 2hrs 45min. Her intern showed me all of my images, drew pictures of how the beams would be set to protect surrounding tissues and organs and shared why and how the entire process would commence. The doctor walked me through every single side effect and gave me the number to her nurse who I can call at anytime, along with a number to reach the RO on duty 24hrs a day. I left the consult with a binder and 60 page text of what to expect from my treatment.

I see my doctor after my treatment every Monday where she asks a litany of questions and gives me anything I need to ease the side effects (creams, etc.). Her nurse peeks in on me regularly as I go to my daily appointments to make sure I'm doing okay and the technitions offer me hot or cold packs every day to make sure I'm comfortable.

I sharing this information because I want women to see that there are doctors and cancer treatment centers that genuinely care about your outcome and want to do what's best for you. If you are not seeing a doctor who answers all of your questions or simply does not know the answers, go to a new doctor! The first RO I went to was awful. I ended the appointment and found a doctor who I think was a gift to me from the angels.

I am not in any way discounting or minimizing what any of you are going through. I really just wanted to say that I am truly, from the bottom of my heart, sorry that you all had to go through what you have gone through

I second Can's experience. I too was blessed to have a great caring team of techs and doctors for my radiation treatment and in fact my entire BC experience from start to finish. I realize after reading the horrific SEs some of you endured that radiation is not the walk in the park some doctors apparently led you to believe.

I was however forewarned by my Oncologist that I would have some burning and fatigue halfway through my treatments. I did but nothing major. I had 33 treatments. I am aware some side effects like lung scarring might not show up for years after treatment. I am 6 years out next month. I was happy to dodge chemo.

We all know BC and the treatments that follow is not one size, fits all. We all react differently.

We all also know that just because the doctors and/or their facilities have stellar reputations it automatically means the best treatment. Unfortunately sometimes we have to find out the hard way they don't live up to the hype.

I'm sorry for all of you who definitely deserved the best but your medical teams fell short of expectations.

Diane

It's only a year out for me and I still have breast edema and redness. I 'm going to call it bedema. Lung fibrosis anf thyroid nodules have turned up since as well. Still have pain from three surgeries for DCIS and ANLD. I think the radiation made the pain worse. What does a good team have to do with it, they are still burning you from the inside. I had a good team, they gave me a warm blanket, talked nice, didn't keep me waiting

I don't know where to post this. Forgive if this is the wrong spot, but I am almost vibrating with ... anger? Anxiety? Frustration?

I have done three rad zaps out of 16 and it feels wrong, wrong, wrong. I was told I would have no effects until mid treatments (zap 8) but after only three shots, I most definitely have side effects! My breast is swollen, hard, painful and turning bright pink. The incisions, that had finally faded, look angry and red again. I am getting a shorter course but higher dose of nukes with each zap.

Is it worth it?

I hear women say they will throw everything they can at this disease. I understand that. But then what if you get hit by a bus after your last rad treatment? Or fall down the stairs? Or eat some bad burger? Or take a foreign vacation and get ebola? The point is that this idea we have that we are 'doing everything we can to ensure a long and prosperous life' is kind of bullshit. We cannot, no matter what we do, ensure anything of any sort.

We can all take reasonable steps to keep ourselves safe.

- wear a seatbelt, that safety measure carries no risk

-cook your burger well, carries no risk

-hang onto the hand rail when going downstairs, no risk, sensible

-cut bacon out of your diet, no risk other than a boring diet

- do not exceed the speed limit

-do not run into traffic

Then along comes breast cancer and suddenly to reduce my chances of dying from this disease, I am being subject to all sorts of procedures that carry KNOWN RISKS. We KNOW that hormone blockers, chemo and radiation will damage us. It is a cold, hard fact. Yet we happily accept these known threats to our health to rid ourselves, maybe, of death by cancer. It must be understood that death by every other crazy means is still a 100% possibility, and that one of them will be your end is also a FACT. Yet we accept inflicted threats to our health and quality of life as if breast cancer is the only thing lurking in the woods. IT IS NOT! Heart disease is more likely to kill me than breast cancer and yet I lay on a table and let a big machine COOK MY DAMN HEART!! Now where is the intelligence in this scenario?

We get sucked into the machine of panic realizing we are limited beings with limited time and oh no, this death thing, that shit happens to other people but not me! And then we accept all sorts of damage, much of which never leaves us, that affects our quality of life and in many cases, no matter what we do, breast cancer kills us in the end anyway! It seems to me there is no good outcome, no way to avoid death, no way to guarantee we'll survive the bus trip home after treatment, so what the hell are we doing?

Am I being fatalistic and saying that I choose death? Well, as I see it, death was already chosen for me the day my mother gave birth to me. Same for my own child. The ONLY thing I can guarantee her is that one day she'll be dead. Until then, its a crap shoot. So in light of this truth, why would I continue to take treatments that can very clearly shorten my life with secondary problems, when those treatments guarantee me absolutely nothing?

I am so frustrated with not even knowing my own mind in all this. I am having effects so early into treatment and I'd be a horse's ass not to know it's likely to get much, much worse and leave me with damage that ultimately may be what kills me, instead of the cancer. Yet we take all this treatment, accept it all, as if it is our only way to a long healthy life. WRONG! WRONG! WRONG! A long healthy life is pure luck and has NOTHING to do with our paltry efforts. In that light, I have to be stark raving mad to lay on that table and allow one more killing rad into my body. I may not be able to guarantee good health and long life but I sure can avoid things that knowingly shorten it and radiation is on that list!

Cancer is not the big picture. Cancer muddies the big picture. Cancer is the trees and not the forest and in the middle of it, we do not think straight. We DO NOT grasp the big picture because the medical community largely also does not grasp the big picture. I hate this. I hate not knowing what to do. I am scheduled for dose 4 on Monday and I am really, really thinking of throwing in the towel. Thanks for letting me angst. I wish I knew what to think and do.

KB870, I wasn't healed enough. I wonder what the hurry was. Unbelievable how much they charged for each zap, but then Medicare pays what they pay

I'm reading this with great interest. I did the three week high-dose protocol and have symptoms of lymphedema on the area of my breast that was zapped. Marijen, that's pretty scary re: some studies show that radiation may strengthen the cancer... I've never heard of that happening. Yikes.

Runor, no one can make you walk through the door and lie on the table. Just tell them you won't do anymore until you talk to your RO. Try to gather information for him/her today or just say you're not going in until Thursday. My RO wanted to get through the risks so quickly, I could tell she was upset when I started making notes but she didn't really do a good job and I'm sure she didn't want to - she would have had to tell the truth. Everything that went wrong after that, they were all in denial. They'd never seen it before, it wasn't the radiation, bla bla bla. I was sensitive etc etc. If it was all good then why am I more upset a year later? Got read everything at Radiation Recovery topic, please.

Runor, not trying to talk you out of it, just giving you and anyone else forewarning. I thought going in that whatever happened would be immediate and I could stop at that point. No one said anything about years down the line. In my case they couldn't find the primary tumor and I had one positive lymph node with 3mm. The after affects have added on another year for me SO FAR, it wasn't a "breeze", like some say. The reason I'm concerned is your problems have started already. Over and out.

Marijen - this sounds like an older article to me. For example:

"A promising clinical trial is underway at the Johns Hopkins Avon Foundation Breast Center to determine if The Active Breath Control device will help to better protect women against heart-related side effects. The device provides an innovative way for the patient's heart to be spared radiation by controlling her breathing during the actual radiation treatment."

Deep Inspiration Breath Hold is well-accepted and ever more widely available and is very effective in moving the heart out of the radiation field. In addition, many women's hearts are entirely outside the field even without it, as shown in the planning scans.

Everyone has a right to express their own experience and views but when posting technical information is should be as accurate and up to date as possible.

My own experience with RT wasn't quite as outstanding at Can3616 but it was a LOT better than what some of you are describing. I was very reluctant to do radiation (despite understanding its relationship to successful treatment with lumpectomy) but found the burns minimal and the side-effects manageable. And I had a lot - 35 rounds, 3 fields. Furthermore, the more I learned the more I understood the value of the treatment in my particular situation. I'm not glad that it needed to be a part of my life but I am glad that I did it.

If I had read similar posts when planning treatment I would have been completely freaked out - probably unnecessarily. I truly hope later readers will understand that while all of these extremely unsatisfactory experiences are deeply disturbing they by no means represent the experiences of most women treated with radiation therapy today.

BCO itself has outdated information. I was providing a list for Runor. BCO also has an article that says approx 19% have recurrence after radiation. I suppose that depends on how aggressive the cancer is to begin with. Like KB says, bareclaw, it's not to scare, it's to inform. I'm not going to waste time trying to convince anyone. Just showing concern for Runor, who hasn't had much time to digest since he dx was recent and again, she is already having sides. Hmm I'll have a side of coleslaw instead. Don't shoot the messenger.

Bareclaws- Try to remember that most who are doing fine aren't on this board anymore. That goes for chemo, sx, hormonals... I had a lot of friends when I was starting on this path who were just a little ahead of me. Now I don't see them. Once in a blue while. People who stick around are either having problems, looking for info or are going through some part of this. Fact is for many of us, the risk of rad problem is less than the chances of recurrence. So you need to have an RO you trust and express your fears, and go over YOUR own path. Everyone is different. There are risks sure but is it worth risking the possibility of recurrence. That's the whole problem with all the txs we have whether chemo, rads, hormonals. They all have risks, some big, that suck but you need to weigh that against your own path. Hopefully you have a team you like, feel comfortable with, talks with you and cares. Good luck to everyone deciding ANY tx.

While it's awful what's happened to OP I fear people are going to be scared right off the bat and not look into it for themselves, with their own path. I think if I saw this thread before rads I probably wouldn't have done it, and look at my stats. I am Ki67 75, have a lymph node involved, had 7 cm tumor, ER+ 95% PR+ 50%. It wasn't fun just like chemo wasn't but luckily I had a good team. Did it work? Who knows but someone like me or worse (and I mean purely going by #s here) to not throw the kitchen sink at it doesn't make sense. I have no medical conditions so that too made it easier to decide.

So my advice is to weigh YOUR situation individually and don't just be scared about ANY tx because of some bad experiences with this or that. Take it ALL in and decide. I know age plays a difference too. My 72 y/o mom had lumpectomy and rads and is trying AI. She's DCIS and had 2.5 cm tumor. Hopefully it worked. Hopefully whatever we do or don't do works. Maybe some day we'll have more definitive answers and better txs but I'm not holding my breath that it will be in my time.

Best wishes to everyone trying to decide. It's hard and awful, I know.

Congratulations Runor, you already know more than they do. Tell me is your other boob red, swelling, and hot. I doubt it. I think you've got her stats right. 1 out of 4 recurrences, go on living. But sounds like her stats are dumbed down and she doesn't know much about it. Please keep us updated. There are others here that are better at determining risks. There is a recurrence topic here somewhere.