Please help me

LiveWellToday

Hi all, I finished radiation last week. I had a mastectomy. Was stage 1B. Two small tumors in the left side and one micromets node. Some rad oncs suggested radiation other said don't need it. The ones that suggested radiation said recurrence rate could be reduced by 10% (recall for whole breast radiation recurrences rates are reduced by 30% after a lumpectomy and also recall that the dosage is much less--I got 50 grays and 5 grays to the heart since its the left side).

I was so confused. I am PR and ER positive. Good margins. No extra nodal extension. My surgeon who I trust told me don't do radiation -- its over treatment for me she said. Even the rad onc said its over treatment. But I have kids and din't want to put my kids through this again. But now, I am in looping regret mode. I think about every way I should have said "no." I can't focus on things without this coming into my head.

I think about how I should have trusted my surgeon, how the RAD onc treated me like a number, how I never got personalized attention from the RAD ONC, how much anxiety I had during the first day that I almost walked away but went along with it because it was "scheduled." I think about the you woman sitting next to me in the waiting room who had breast cancer 4 years ago and then developed cervival cancer. I think about my surgeon who said "I would not do it if I were you." I think about the doctor who said that there are so many latent effects like heart problems and lung cancer that can come up 10 years from now. I think about how I have to delay my implant exchange surgery now for 6 months (I have tissue expanders). I think about how tight my skin is. My throat is sore from teh radiation and my taste has changed.

I worry about losing my implants and other cosmetic effects. I am 46 and in very good shape. I take care of myself and eat well but now I am on anti-anxiety medication to get me to sleep at night. I feel I should have listened to my gut and not my mind and taken a "wait and see approach" given the conflicting opinions, the low upside, and the large side effects of doing post-mastecomy radiation --they radiated under my arm, superclaval nodes, and internal mammery nodes. It just feels like I was treated like a piece of meat and didn't want to stop after I started since I was worried what would happen. But every day I went in, I felt like I was being violated. My therapist says may be I am suffering from a reaction to trauma. I should try to distract myself and let these thoughts out of my mind.

Has anyone experience this deep regret and anxiety over side effects. I am someone who thinks wifi can cause cancer so I don't know what I agreed to take 50 grays of radiation inside my body. I am having a hard time functioning but doing my best for the kids. Any advice on what do do? How can I make myself believe this was a good decision? I may have regretted if I didn't do it. My tumors also had low oncotye scores (4,6,8--I have bilateral cancer). The fact that I have 3 tumors and LVI scared me into doing it but now I feel I betrayed my body and should have trusted it to heal itself given all the good support I am now giving it (veggie juice, exercise, yoga, acupuncture, ..). Instead, I now I am mess and can't sleep.

People tell me that you have to believe the radiation is good for you and not bad for you otherwise my body was treat it like it is bad for me. All the stress hormones I am causing as a result of my reaction worries me as it increases chance of distant spread. Would love to some support and advice.

I have heard people say "be positive," think you are cured, you can't change the past, you were destined to do the radiation, you are an aggressive person and your personality is to take control of situations so you had to do it, you made the right choice for your kids, you are overestimating the side effects of radiation (if it were so bad why would the drs recommend it?).

buttonsmachine

Hugs. I'm sorry you're feeling regrets. Try not to punish yourself. You've done a lot to treat the cancer and be there for your family, and that's a good thing. Most of the time, the cancer is a bigger threat to us than the long-term risks if radiation.

Whatever happens in the future with your cancer, you will know you did all you could. In my experience, knowing that I've done all I reasonably could is a comfort.

Is your therapist helping you come to terms with things? Often the biggest emotional effects set in after active treatment. It might be that the shock of everything is catching up with you now.

Georgia1

LiveWell, PTSD is pretty common in breast cancer survivors and that may be what you're feeling now. I agree with Buttons, of the two crappy choices you had, the better one was to ensure you did what you could to fight the cancer.

I had a relatively easy time with radiation, but I still felt regret and sadness once treatments stopped. It was weird - I felt like I SHOULD have been happy but my breast hurt, the fatigue was getting worse, and I couldn't sleep. All I can tell you is that those physical symptoms will lift soon, and that you made the best decision you could. If you like your surgeon and your MO, concentrate on those good relationships and put the crappy RO and rad techs in your mental trash can. Remember things you used to enjoy and do them. Spend time with your kids. See if your hospital has a support group for breast cancer survivors and maybe make a new friend. This is a super hard phase but we're here for you and I know you can make it.

WC3

One thing I have come to accept about being human is that we can't always know if we have made the right decisions in life.

I think you had valid reasons to make the choices you did.

Peregrinelady

No matter the decision, we all have second guessed ourselves. I, too, had a micromets with a 2.5 cm tumor. I got 3 opinions from rad oncs that said risk outweighs benefit so I didn’t do radiation. Now I see others with micromets that had radiation and I wonder if I was under treated. Please, for your sanity’s sake, don’t look back and focus on the future instead.

JoE777

Wow!! The wisdom of you ladies is an inspiration to me and I've moved further down this road. LiveWellToday, your name is the answer for today and has inspired me to do just that. It's hard and sometimes is lonely but youron the right site to move past yesterday. Cyber hugs and Peace.

LiveWellToday

Thank you all for your quick and thoughtful responses. it really helps to know there is a universe out there helping me and giving me and each other support. My skin under my arm and on my chest wall is peeling off and exposing pink skin underneath. I am going to see my local RO Wednesday whom I love but instead of using him I went with the Big City RO per the recommendation of my father. So I felt a bit out of control in many ways in this process. My shoulder also hurts. Having these symptoms doesn't help.

Everything you say helps but I have to get my mind to accept it and symptoms go away.

Georgia1

LiveWell, just one more piece of concrete advice re: the shoulder. You should have gotten post-surgery and post-radiation exercises, which are really important to do. So ask your "good RO" about that if "your dad's RO" hasn't mentioned it. They made a world of difference for me while my pec muscle was healing up. Hope you feel better soon; we're all rooting for you.

LiveWellToday

Hi there, My therapist thinks I have a trauma reaction. Sort of like PTSD. Its like was sexually assaulted since I made myself do the radiation even though a strong part of me didn't want do them. 2 week out. I have dry mouth and things taste metallic and generally bad. I am pretty sad. I think about all the mistakes I made in making the decision (rushed it, trusted the wrong doctor, scheduled it before I decided, allowed my father to influence me to do it in the BIG city that he lives in rather than near my family where I could get more personal attention, etc.. etc..

Hopefullfla

I can totally understand i also had stage 1 breast cancer.I had partial breast mascetomy.No chemo. 5 day radition twice daily for 5 days.On day 3 nurse said my breast was red needed to ask doctor to look at it.She said no i will be fine off i went.2 more days of radition.After 1 week my follow up appointment with surgeon.He stated he has not saw nothing like this in 30 years.sent me back to radiatin doc.HE said i am so sorry has no idea what happened.Then sent me to wound doctor.I have been on wound vac.and in hospital twice. This is so amazing i cant believe it.I went to top notch facility. My breast is totally a mess.Just wondering if this happened to anyone

Morwenna

Hi Hi!

Do try NOT to keep beating yourself up wondering if you did the right thing. I'm not a great fan of the idea that positive thinking is the be-all-and-end-all in cancer recovery and outcome but I can say for sure that wondering and wondering if you did the right thing is pointless and will only make you feel terrible, and you did what you felt you needed to do at the time.

It's difficult while everything is so sore but try to keep practicing your shoulder range of motion stretches as pain allows and be prepared to ramp those up once you are healed as there is a natural tendency for irradiated skin to tighten and tighten. Work hard on your posture and consider seeing a physiotherapist to help you with this and to avoid longer term issues with your shoulder once your skin had healed.

Best wishes..... xx