Refusing Radiation?

I think that is smart. I have a recurrence after 10 years. I saved rads for now. Nothing left to lose.

ChaosRains, Did you have any lymph node involvement. I am in the process of deciding whether to do the radiation and have been told I am in the gray area with only one node positive out of 17 for cancer. I had a mastectomy and thought i would be clear for no radiation, but they are telling me its my choice..they aren't telling me I must have it. Tough decision. I am going for a follow up tomorrow to have questions answered. Are there any questions that you asked that may help me with my list of questions?

I totally relate all these posts. I am almost done with radiation. I am having 25 total. I had one lymph node before chemo that was positive that we knew of. I had a complete pathological response to chemo in the breast tumors and in that lymph node.

Still, I was told that due to the nature of my cancer I should have radiation too. My oncologist says that in 35 years, he is never had a local recurrence in a breast cancer patient. He said though that of course there had been other mets.

I am not sure at this point whether or not I'm happy to have done rads. I feel like I was lied to in that I am having an awful horrible burn reaction that was described to me initially as being like a light sunburn. Well, I've had plenty of blistering sun burns and let me tell you if any more of my body was burned like this I'd be in intensive care. It's purple and on the verge of skin breakdown in the armpit area. Very painful.

That being said my idea initially was to throw everything out it and listen to my doctors. I am really at a huge risk of lymphedema now, even more than before. I feel like they have absolutely no consideration for what happens to you after all these treatments. They only care about what they're doing to you at that given moment. There needs to be more emphasis in every practice on quality-of-life After treatment. I get blank looks when I mention these kinds of things.

I think it is very smart for everyone to get second and third opinions even before they start radiation. I wished I done that myself but it's too late for me now. And the best part is, even with this, I can still develop stage 4 later down the road. I don't feel like there's any real guarantee The radiation will completely stop my cancer. It would be easier to take if there was!

Good luck to everyone trying to make the decision. We can only do what we think is right at the moment, for us.

Denise, thanks so much for sharing your experience. It helps to hear from those who are currently going through radiation, those recently finished and those of you well on the other side of it.

Do you have any issues with your chest wall, post-radiation or noticeable changes to the texture of your skin?

Thanks so much, Denise. I will admit that it really pains me to think of my skin being permanently discolored, especially on one side, not the other. Sort of a harlequin effect. Most women aren't too bothered by that but I am really upset about all these permanent changes to my body.

I had not thought about issues of lung pliability and will have to talk with them about that. I, too, am prone to bronchitis - I don't get colds/flu readily but if I do it almost always turns into a prolonged attack of bronchitis that nothing will calm, including codeine. This could be a big issue, so I really appreciate the heads up on it. I am glad to hear that yours has calmed down over time.

I will admit that I am really struggling with the issue of radiation - I'm not certain the absolute risk reduction is really worth years of side effects. My proposed team is very rigid in their thinking, too, which doesn't help. I would like to explore other approaches to RT but am limited by our insurance coverage.

Thanks for letting me whine.

Meow13 - oh so glad Silvadene worked for your son!  It really is like a miracle, but I know it has sulpha in it

and if you are allergic to it, not good.  But I had no problems and so glad your son didn't either!  I kept every last

drop of it in case I ever needed it for something else.

Hopeful8201 - if I had to pick one thing that changed my body the least, it would be radiation.  Had a heart attack

from AC Chemo, Herceptin gave me permanent heart valve damage, MX cut my breast off -- so the Rad thing was

no big deal to me.  Perhaps that sounds like I am being trite, but I am really not.  For me, it was the only decision.

And I definitely understand others who do not want to do it.  But if you go looking, you only find that "bad" info

about Radiation.  Most women I've talked to that did it, never complain about it after the fact like they do chemo,

for example.  But you have to do what is right for you, and only you know that in spite of what doctors might say.

Connie07, I see in your post that you now have truncal lymphedema. I have yet to be diagnosed, but I think that I may have it, not sure. I go to PT for lymphdrainage massage and exercises to hopefully prevent. Saw a physician who said she didn't think I had it, but sent me for PT just in case to hopefully catch it before it develops. How do you know you have truncal lymphedema?

Connie07

I actually saw a Lymphedema Physician and she said she doesn't think I have it. But there is a little bit of swelling in the back area near the underarm. The underarm area is also a bit swollen, but they all attribute it to mastectomy even though it was 4 months since. They all say it could be from the surgery still. But after each fill I get ( I have tissue expander) my arm becomes tighter and feels a slight numbing sensation. I do have cording which is why the physician sent me in the first place to PT, but I have been going since end of January and still don't feel like the cording has gotten any better, or less.. and the swelling in the back area is still there, no less. So you start to wonder do the PT's know what they are doing? I see two different ones, both certified in LE. One told me to get a camisole that has a little bit of compression to it, right now I wear a sports bra that hooks up the front.. Can't find a camisole that I can get over my head as they are all so tight. I even went into much larger size but can't get into it. Even my plastic surgeon said good luck with that! Thats one of the reasons that I am having such a difficult time making a decision about getting radiation. I am in a gray area for radiation, had only one node positive. So I continue to struggle.

Hi Chaosrain- we were on the July chemo thread together. I know you've made up your mind about radiation and just wanted to mention of few things I heard along the way. My RO said radiation reduces reoccurence by 50 % - that's a lot in my book. Also my breast surgeon told me she had a patient who didn't do radiation and the cancer came back in 2 years. I am doing radiation right now and I haven't had any problems. Yes I know maybe I will somewhere down the line, but hopefully not. I wish you the best. Come back to the July chemo thread - a lot of us still chat over there.

Hugs

Nancy

Nancy,

I'll have to hop on over to the July chemo thread!

I have a 50% chance of it coming back even WITH radiation, but that is not why I decided not to do rads.

Any one of you can ask your RO "how much does having radiation change my baseline survival rate?"

survival rate to me was the number I was interested in... how much longer can I hope to live if I have this treatment? The answer my RO gave me, and everyone's cancer is different, is that 6 1/2 weeks of radiation would change my survival rate by 1.5 or 2 % which to me personally, is not worth the side effects, etc from rads.

I would never suggest just not doing radiation, you must get information specific to your cancer, speak with your doctors and make a decision that you can live with in that regards. I have friends that have been through or are going through radiation, I think they made the decision that was best for them. My choosing not to have rads was the decision that is best for me

Shan

hi Shan - I think the most important part is that you've made a decision that YOU feel comfortable with. That's really what matters. I also see you would be radiating the left side and that would worry me too. I am glad you are doing well. I was worried about you there for awhile.

Lily I am sorry you have discomfort. That stinks and I truly hope it gets better for you.

Hugs ladies

Nancy

Welcome to BCO JaneQPoppy, it is a time of very complex and long term decisions - not easy. However, talking with others from these forms should give you a full spectrum from those who have "been there and done" your options. As much as you may form opinions based upon the valuable feedback here, please also consider that your doctors and surgeon have actual hands-on assessments with all the scan data, so please consider their advice along with supplemental advice and experiences gained from here.

Yes, it is hard, when you are of the type where you are more sensitive to treatments than others seem to be, to consider the many treatments often required, but consider at least trying any your Doctors suggest. We wish you the best, with little side effects to any treatments you need to have.

The Mods

Jane, I am >90% ER/PR+ so I decided to give surgery plus tamoxifen a chance to prevent a recurrence by foregoing rads and chemo at this time.

I had recovered not long ago from a bad ladder accident (painful 6 mo recovery) and simply couldn't handle being a "patient" again so soon. The thought of 30 rad treatments was too much to handle and almost sent me spiraling into a deep depression. Refusing rads and chemo at this time gave me peace of mind. If my cancer comes back, I know I won't regret my decision as it was the only decision I could handle at this time. If circumstances were different, I might have chose differently. In addition, I have totally improved my diet, basically have given up alcohol and am exercising more than usual.

You have a choose a treatment plan you are comfortable with for your currentcircumstances and that you will not regret later. Wishing you all the best!

I've always wondered what percentage of radiation patients have favorable versus unfavorable experiences. In no way do I discount the unfavorable experiences. They must be hell. OTOH, I've had radiation twice--once whole breast after a lumpectomy and had nothing bad happen. So, when I had mets to my hips and spine, and they could get all three places in one field, I decided to zap those too. Boy, the discomfort I was feeling was gone within a few months and I'm sure glad I did it.

The second time, I had some skin deterioration right at the tailbone, but with 'baby butt cream' and patience, it healed up fine. I am just about the whitest person on earth and didn't burn (I did use a radiation cream, but don't remember the name of it).

If everyone had the experiences that I've had with radiation, there would be people lined up around the block for it. I hope that's the normal, but I really don't know the statistics.

Thank you all so much for these prompt (!) and informative replies, everyone.

Micronancy and Fluffycats (love your screen name, as I have three myself), I couldn't tell from your signature blocks if y'all's lymph nodes were clear. Not up on all the codes/abbreviations yet, i.e., "0/1" and "5/19"-- what does that mean? My surgeon took 5 nodes and they were all clear.

I would like to opt out of radiation all together. From the hasty research I've been doing in the last couple of days, am I correct that if I don't have radiation now, and I do have a recurrence, then I could have radiation later...but if I have it now and have a recurrence, I don't have that option and a mastectomy would be my only option?