Regrets?

dawnmarieg

For those of you that had radiation do you have any regrets of doing it? I am scared to death after all the research from the pamplets my dr gave me to the online research and from hearing others stories of radiation...any insight would be most appreciated!!!!!

ksusan

You'll get a range of opinions here. I do not regret it.

muska

Hi Dawnmarie, radiation is current standard of care, especially for those of us who had positive nodes. You can find multiple studies supporting its positive impact in disease free survival. Like any serious treatment it comes with side effects. The horror and regret stories that you find on this and other similar sites usually refer to burns, impact on breast reconstruction and the like.

I did radiation because I knew it was an important part of my treatment. I hated it probably more than chemo but I have no regrets. I am three years out and NED. My radiated breast looks a little perkier than the non-radiated side but that's about the only side effect so far.

pupmom

I have no regrets. SEs were very manageable and I feel I got the best, state of the art, treatment. Four+ years later I have no issues.

abigail48

very bad for the heart. friend died after rads. n ot young and had had heart surgery 20 years prior but the radiation was closest to his dying.

Hopeful82014

I was also very concerned about RT, although I knew from day one that, no matter which surgical route I went, RT would be needed.

It was not fun and I've had some lingering issues but I do NOT regret going through it.

BTW, today's technology and equipment avoids most (almost all) damage to the heart. I would ignore stories of damage that occurred 20 years (or even 5 years) ago.

dawnmarieg

I had 12 out of 20 lymph nodes on my left side that had cancer in them, which is why my dr is recommending radiation but said it was ultimately up to me. It will be direct therapy on the left side axillary and left breast. Closest to my heart...

muska

To add a few words to Hopeful's comment above, try finding the best equipped facility - the newest machines are different from the older ones - and an experienced RO who can design a good plan for you. The accuracy of the plan is important, so you want experienced specialists working on it (it's not just RO who is involved.) During the treatment listen to your body and raise questions as soon as you get any. You will be fine.

Carlsoda

It is really not that bad. I am in the middle 13/30 done on my left side. I questioned heart and my RO showed me the treatment plan mapped out and all ok...my heart won't be getting any radiation. My only SE right now is tiredness, but extra sleep and caffeine have been helping no regrets at the moment

Hopeful82014

DawnMarie, if you'll look at my sig.line you'll see that my RT was on the left side, also, and included axillary nodes (among others). I was VERY concerned about cardiac damage. Today there are very few situations in which it is inevitable. My RO showed me my planning CT scan which showed that my heart would actually fall completely outside of the treatment field. There is also a technique (DIBH, or deep inspiration breath hold) that can be used to lift the heart out of the line of treatment. I think Carlsoda's comments are much more typical of what is experienced today than some of the horror stories you'll read.

Have you had a consult with an RO yet? If not, please do raise your concerns with an RO in a meeting - get a 2nd opinion if necessary. I spent over 4.5 hours with 2 different ROs, at 2 different systems in order to explore all options. In the end, although I wish RT hadn't been necessary, I'm fine. with the fact that I did it and feel that I went into it with my eyes wide open.

ruthbru

No problems with radiation (left side), no problems stemming from it (9 1/2 years out). I was glad to do everything advised to minimize the chance that I would ever have to go through cancer treatment again! I found it to be the easiest part of my treatment (chemo, for me, was about a million times worse than rads).

Artista928

No regrets. I had 1 node and 7 cm tumour so the decision was pretty easy for me despite the scare you hear about heart and lung (left side for me). Whatever you decide is a risk. I just went by I have no heart/lung issues (am pretty healthy despite being way overweight) so I went for it.

ChiSandy

No regrets. I had the short hypofractionated protocol: 16 treatments to the tumor bed. No fatigue, broken skin, or even irritation--just redness (more like pink) and tanning. It enlarged my tumor cavity seroma for a few months, but it's gone down. I developed cording and mild lymphedema, but I had 4 nodes removed and am moderately obese (both risk factors independent of radiation). I'm glad I was able to have it and a lumpectomy--after much research & consultation I felt a BMX would have been overkill; and a UMX would have necessitated a reduction of my healthy breast because they make neither prostheses nor mastectomy bras in that large a cup size (38 I). I am a big fan of as little surgery as possible, so I probably wouldn’t have opted to reconstruct.

NancyHB

I worried, too, given the location of my tumor (right side of left breast, directly above heart), and voiced my concerns. My RO was very clear - it was impossible to avoid all contact with my heart/lung but they would do everything possible to minimize it. I was shown the mapping; I used an active breathing apparatus (similar to a scuba breathing mask) to further keep damage to a minimum. Four years later I have no known damage to my heart, and a very small area of radiation fibrosis in my left lung that doesn't impact my ability to run, do yoga, and lead a very active life. I had no breakdown at all of the skin during radiation. After 25 treatments and 5 boosts, I had what looked like a suntan, nothing else. I was very tired, and by the end was taking an hour-long nap each afternoon (but I had some work flexibility and was able to, otherwise I would have simply gone to bed an hour earlier).

I have no regrets, and I suppose I can say that because I didn't have any problems during, or after. I didn't have an positive nodes but did have four nodes with isolated tumor cells, so I wanted to do everything I could. Even now, with a local recurrence, I don't regret having had rads.

It's hard to know how you'll react to radiation until you're in the middle of it. I wish you well in making your decision.

Sjacobs146

No regrets. I felt very comfortable with my RO and the techs. They did everything possible to make sure that there was as little damage as possible. Rads was a piece of cake compared to chemo.

Amie0215

I am in the middle of proton therapy at Procure in Oklahoma City. Talk to other doctors and find the right fit. I have had one that made me second guess my entire treatment plan. (I already had chemo and surgery - I can't change it now!) That one was marked off the list right away. The one I have now gave me hope and answered ALL my questions with the slightest bit of annoyance or eye roll.

Best of luck and keep pushing forward.

bethanygb1

Interesting thread. I am all new to this. Can I ask how long your radiation lasted? How many days and how many minutes per day?

Artista928

It depends on your individual #s. Mine was for 5.5 weeks (28 zaps/no boosts) M-F for about 20 min each time including the changing & wait. First time is longer since they need to figure out you position on the table.

amanda6

I don't want to scare anyone, but I am now 6 years out with heart problems that I believe tie in with my cancer treatment ( left side). I believe there is more awareness of the possibility of cardio problems now & cardiologist s are more likely to be part of your care team. If you're concerned, I would suggest seeing a cardiologist before & during treatment ( chemo can affect the heart also). I would definitely go through treatment again, it saved my life, but I would do it with more awareness. I want to add that I think they proton delivery system is safer, I'd consider that option. Also I had my treatment over 6 years ago & much has changed for the better since then.

dawnmarieg

Thank you to everyone one that responded. I am taking one day at a time with Chemo and will talk with my team after 6 more chemo treatments are done.

ElaineTherese

Good luck, dawnmarieg!

For me, radiation was more of a nuisance -- the going every day for 6.5 weeks -- than an unbearable treatment. It was boring compared to chemo, and a little dehumanizing. But, I have no complaints.

__asher__

I'm planning on doing rads after a back and forth. So, I'm tuning in to hear the opinions.

LiveWellToday

I am regretting my decision to do Rads. I have 3 more left. I regretted it since day 1. I didn't quit because I was worried what would happen. I have two small FOCI of LVI and am 46 and had micromets in 1 of 4 nodes. My Oncotype scores were low. But I had multifocal and bilateral cancer. I had a BMX. Here is why I regret it:

1. I don't think my RO treated me like a full person (no concern about breast implant or other risks) but he is one of the world's best oncologists so I went with him.

2. My surgeon was opposed to it and its a woman I trust. She said she would not have recommended I see an RO but I made the appointment when I thought was was having a lumpectomy until the MRI revealed more tumors and then it turned in a mastectomy. One other RO said "no"--the toxicity is not worth the benefit.

3. My own research suggested I was borderline. The newer research suggests low recurrences risk BUT I had 4 of the America's top ROs telling me to do it. Yet my instinct is that there aren't clear guidelines in my situation. So ultimately it was up to me to decide.

4. At best my risk reduction would be 10% for local recurrence and possible 5% overall survival (but that number is so speculative I think now). So it would be reasonable to skip it but none of my ROs told me that (one just said "I can't make anyone do anything").

5. I decided to do it for my kids since they are young *9 and 11* but now I worry that I may see them to college but not until they get married because my radiation was the left side. Heart and lungs both get radiation (no matter how good the plan is). MY RO say my plan is "fantastic" but still.

6. I was scared and not thinking properly. I didn't even make a pro/con chart instead kept calling people for advice rather than meditating on it and seeking internal guidance.

7. I didn't want to go into the building the first day and didn't want to lay down but did it because everything was "scheduled".

8. I didn't trust my gut -- I couldn't hear it through all the trauma I suffered from the diagnosis to the BMX.

9. I undervalued my quality of life based on what friends and male doctors said (they said something like it doesn't matter if you are dead with perfect breasts and even if you have lympadema at least you are alive).

10. I didn't value my own personal preferences which is that I think radiation causes cancer--I turn off my WIFI at night, don't sleep near my cell phone, don't stand in front of microwave, don't get x-rays often, etc...

Everyday I wake up at 3am thinking about how stupid I was to agree to do it but my husband and others reassure me that the decision was reasonable (I could have also said no).

I am now taking Xanex and in therapy. BTW--I have a very fulfilling and great career but am taking a leave. Why do I write this? Partly to vent and partly for others who can learn from my mistakes.

Dani444

I am back and forth too Asher. I am reading these threads, I currently am deciding mastectomy (with probably) no rads, or the lumpectomy with. Unless the second biopsy I am having tomorrow comes back with cancer. I just don't know if I can emotionally handle the rads. I will also be going to the hospital I work at and felt very uncomfortable with people I know essentially knowing what feels like intimate details of me.

Meow13

Dani, I didn't think about radiation very much since my tumor board said mx for me. I guess I am glad mostly I worried about skin and tissue damage. My skin is super sensitive and really didn't even think about possible lung and heart damage. A friend of mind had alot of radiation for bone cancer and her skin is like leather she hates it. Also she suffers from fatigue. But I think it is related to the many sessions she had.

muska

@ LiveWellToday

Radiation was the most difficult part of treatment for me too, so I fully understand everything you are saying. You didn't include the dates/details of your diagnosis and treatments but it looks like you are very 'fresh' from it. Give it at least several months, better a year - in my experience, that is how long it takes to fully recover from it (psychologically in the first place but physically too) - and your perspective may change.

Best to all.