Had to quit radiation

Roberta77

I was very concerned about taking radiation. I had breast pain and continuing tenderness a few months before my diagnosis. Considering my breast pain, I was leery of the pain caused by the radiation. I was told that I would feel nothing for the first 7-10 treatments. WRONG!!!!!  I could feel it the very first treatment. My breast was swollen and tender. After 6 treatments and another 24 to go, I called it quits. The oncologist put me on oxycontin twice a day, lyrica for the nerve pain twice a day and percosets in between. It barely numbed the pain. The oncologist said my case was a first for him. He decided to order a cat scan of my breast and lung and also a bone scan. When I kept mentioning my breast tenderness to my GP and the surgeon and asked what was causing it, they just brushed it aside. Well, I just could not face the radiation and even if I could have, they could not guarantee that my cancer would not return. I just decided I would face whatever comes whenever it comes and enjoy my life. Quality of life is more important than quantity of life.

Mamie2

Wow! Roberta. Let us know what happens with the cat scans. This is the first I've heard of this pain too. Sounds as though someone wasn't "hearing" you even before rads started. I'm glad you oncologist is listening. Have you had surgery? My breast surgeon ordered a bone scan before my lumpectomy. Now I'm two months past my second surgery and today I had my bone density scan. Are you being treated at a breast specialty center? I wasn't in the beginning. When I switched I couldn't believe the difference. I'll be thinking about you. I am all about quality of life. Lessening toxins and boosting the immune system. Take care of yourself.

blackjack

Roberta77.. you are not alone or crazy when you tell them that you are having pain with rads. I had my rads all most 2 yrs ago and on the first day after tx which I didn't want to do...I developed severe burning in my left breast. It felt like a hot poker stick inside. I cried all the way home. I only made it 2 x that week for tx and fought like h*ll not to have it done. I found out after I developed rads dermatitis all over my chest, neck and face that they were giving me a double dose of rads.

I told them I would not be back and that I would take my chances. I really felt that I had PTSS from rads. I now have lung problems and have developed pneumonia x2 already.

I do know how you feel...you need to do what is best for you and your body. I hope you are feeling well soon. Healing hugs to you. Let me know how you are doing.

Blackjack

bettysgirl

I'm sorry you had those problems BUT ostly I am sorry they didn't listen to you.

Pain is very real and NOT a good bed partner. You have to do what is right for you and the fact that they brushed you off means you ad every right to walk away.

Good Luck to you and I wish you pain free days.

Mamie2

oh blackjack, i'm sorry to hear. Double dose? Was that supposed to happen?  Good gracious. I hope you are all right now. Same here, i wish you both pain free days. Good way to put it bettysgirl, not  good bed partner at all!

Roberta77

I had a lumpectomy done just before Christmas. But I had pain and tenderness in my breast at the end of July. I told the doctor, the surgeon, the radiologist that did the ultrasound. I told everyone, yet noone paid any attention. The rads were completely intolerable. They thought at first with the lumpectomy that I would lose my nipple but they saved it. But now the whole nipple area is tender, my nipple is retracted from the scar tissue. When I touch it or put cream on it, the whole area turns a sickly greenish white and stays that way for some time. I should probably get a call on Monday about the cat scan. I am so tired of being in pain.

Mamie2

i am sorry Roberta. Let's see what the scan says. Are you exceptionally fair? I too had a lumpectomy but i had to have a re-excision and sentinel node biopsy. did you have your nodes tested? what are you taking for the pain? Does a heating pad help? I was using one after my surgery because of the pain from seromas. They've dissipated somewhat and I massaged gently to get the circulation going. sometimes when i undress i see that my nipple is YELLOW instead of pink like my other one. I told my doc about it and he said it's all ok. it's just healing.

Roberta77

My skin is very fair. I had my nodes tested and the surgeon said they were clear. The underside of my arm hurts and so do my ribs. But the nipple area is sometimes untouchable. I was taking physio and the little vibrators were helping to stimulate the blood flow. Yes, I find using a heating pad helps. I've tried to massage the scar under my nipple to break up the scar tissue but it really hurts. My nipple is a bit retracted, although it tries to stand up. That hurts. I used to love going without a bra but it hurts too much. I did go for 20 minutes today without, though. I know it's healing because I can feel the itching inside. I am taking oxycontin and lyrica(nerve pain) twice a day with percosets as needed during the day. The lyrica makes me drowsy and confused sometimes.

QueenK

i am not at all trying to minimize your pain.I really do think there is something else going on here though.I am not sure what.

i had a LOT of pain after 2 surgeries and radiation.I still have a lot of pain in my arm.Unfortunatly no ne listened to me either and I had to beg for painkillers, which I was denied.

I am not sure how old you are, and I would never tell someone what to do, but did they explain to you the reccurance rate without radiation? That is enough drugs to treat someone that has very advanced cancer, I am never one to comment on drugs and how much people take, but with my drs they would be very, very concerned if I needed that much medication and was not checked into a hospital being checked from head to toe.

I disagree about the quality over quantity, unless you are in a later stage already.Early breast cancer is treatable.

Binney4

Hi, Jenny,

I've been reading back through your posts and just have to ask: has breast lymphedema (and Axillary Web Syndrome) been ruled out as a cause of your pain? So many of your posts would seem to point in that direction, and breast lymphedema can be very painful.

Roberta and Mamie, if your docs haven't come up with anything else, you might ask for an evaluation by a well-trained lymphedema therapist too. Couldn't hurt, as whether it's lymphedema or not you could learn lymphedema risk reduction strategies and get baseline arm measurements for future reference. (ANY surgery to the breast can result in lymphedema, nodes or no nodes -- we're all at risk.)

Here's a page from StepUp-SpeakOut.org about finding a qualified lymphedema therapist near you:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Be well!
Binney

AccidentalTourist

I had very strong pain in my breast right from the start of radiation.  Junior doctors kept brushing it off telling me it had nothing to do with radiation.  That in a way worried me even more becase I was thinking: 'If this pain is not caused by radiation what the hell is causing it?'.  In the end when I said I was considering pulling out half way through I got to see the consultant radiologist who said that I had inflammatory reaction to radiation and stopped it for few days and gave me anti-inflamatory medication.  This calmed the tissue down although it was never pain free.  It still isn't although I can live with this level of pain.  I am hoping it will stop eventually.

Mamie2

Interesting post Accidental. I haven't started rads yet. I hope I won't be experiencing this. I hope everyone has a good weekend.

QueenK

hey Binney! Thanks, I am not sure if it is lymphedema or not? My breast and underarm do not swell as much as before.I am very very scared of Drs right now.I was misdiagnosed from the start and the fear of them thinking something is very wrong and more testing is there.But thanks for looking for me! You are too sweet

My rads onc said there where NO side effects.At my post rads appt he asked if it hurt to raise my arm? I said yes and he said it was a SIDE effect...idiots.

Roberta77

I know what you are saying, Jennywren, about radiation reducing the recurrence rate. I am 60 and had uterine cancer 10 years ago. The doctors tell me that my breast cancer is a metastisis of the first cancer. My first cancer had spread much quicker than the doctor had anticipated. That increases the chances that this cancer will also spread. But even completing all the rads does not guarantee the cancer will not recur. Some people DO disagree with me on quality vs quantity. I just know that I could never endure the other 24 radiation treatments and I am comfortable with my decision. It has been a week and a half since I stopped the rads and I am now able to cut back on the pain meds. My breast is beginning to feel better.

blackjack

Roberta...I agree with you that we need to do what is best for our own bodies. I am almost 2 years out in July and I still have pain and sometimes swelling in my left breast. I also have lung damage from rads. I hated every minute of rads...so I guess that is why they doubled dosed me to get me done faster and out of there. I had 21 tx and 4 boost. We all make choices and we have to learn to live with those choices. I am comfortable with mine.

I hope you are feeling better soon as they say time heals all wounds.

Hugs to you...remember to be healthy...be happy

Blackjack

Roberta77

I am comfortable with my decision to leave rads and I realize what the recurrence rate is. But I figured, even had I continued the rads and all the misery, there is no guarantee that it won't come back. I agree with what Jennywren says about the meds. That worries me as well. Pretty strong.  But I had a bone scan done yesterday and a cat scan tomorrow. As soon as the radiation oncologist gets the results, they will let me know by teleconference what the results are. I guess I have to wait and take it from there.

blackjack

Roberta77...I will be thinking of you as you get your test done. I know the waiting is the worse part. But we all get through it some how. Sending positive hugs your way. Let us know what your

results are..good

Take care

Blackjack

Mamie2

Roberta, today i have to go in for my Rad #3. I, like you could feel it on my first day. I also turned pink too. I'm scheduled for 16 x. I thought of you. How are you?

Roberta77

Hi, Mamie!!  Well, my spirits are fairly good, but my pain seems to be worsening every day. The doctor has upped my oxycontin and lyrica, hoping to keep the pain under control and to cut back on my percosets during the day. Monday I will get some answers either good or bad. But at least I will know where I am at and what my options will be. I will let you know what happens.  Good luck with your rads. Use pure aloe vera gel and keep putting it on. I also found cold compresses helped the swelling. My thoughts are with you.

LeslieVilla

Roberta, i'm considering the same thing, i has one treatment yesterday and it hurt and i feel scared. How are you now?

MelissaDallas

Leslie, Roberta hasn't posted since June 2009. This is a very old thread.