Wish I had never,never done rads, DEEP REGRETS

miaderm is a gem cream. Created by an onc radiologist. I was cooked and this cream helped a lot, and drinking tons of water and eating high protein diet. Took 2 years. it looks close to non rad side.

I didn't have problems like that. But 2 years for it to calm down after rads is what they say.

macb04, just saw an ad for SCCA "there when you need them". Gag! Thought of you.

Reminds me of these cancer centers of america ads. They make it look like that's the place to be. You get personalized care. Um, this small hospital I went to gave me great personalized care. Stupid. Plus they don't accept folks with a poor outlook to keep their numbers good. I don't think they even take medicare. For me, I liked the docs and staff and went with the hospital 5 min from me. Most places have the same equipment available. I went in with mega questions and had one of the docs looked like I needed to wrap it up, I would have left. I worked in a surgeons office for 10 years and those docs made us learn info that applied to everyone. If it wasn't to technical we were taught something new all the time so we up front could answer basic questions. That's the way it should be. Sadly it isn't and then you find docs who shouldn't be practicing.

I think facilities that advertise hard to go there are the ones to avoid. My dad goes to PT for a stroke he had last year. All well advertised places were nothing special. Through a friend of a friend he found a place that doesn't advertise. It's all word of mouth. My dad has made great strides there. Word of mouth is a powerful thing.

it's like me right now trying to find a good honest mechanic. After going with a highly recommended computer repair with glowing reviews, it was a big dud. I found 1 review wondering how a review from him got posted. This dude stole his id and posted a glowing review. Thankfully I found a coworker who's had good experiences with a place. That's the only way to go, someone you know and trust refers you.

Hello Macb04:

Glad you learned the proper erg technique.

I am sorry to hear of all the side/remaining effects from your rad.  I hope for you that one day they will go away....I will be meeting with my Rad Onc. in 3 weeks.  

After reading all the posts on this topic, I realize I don't really know some of the possible problems from radiation.  Even the breastcancer.org website didn't go into some of the side effects you have to deal with.

Amen Mac. My MO told me there would be a little burning(hopefully) and fatigue halfway through the treatments. In my case she was right but so many people I know experienced debilitating side effects. I did do my homework about possible side effects but I still had the treatments because frankly I was afraid not to. The techs were fabulous and caring. My experience was a good one so I was blessed.

I think you do what's best for you period. It's your body and your life. They don't have to deal with the side effects. You do. Your call, not their's.

Diane

Hello macb04. I haven't been on the forum for awhile. I have had some other health issues the last year. Wanted to give you an update. I still have lymph-edema but it's much better. Again, thanks to you for your help. As a reminder, I had a lumpectomy and then radiation in May 2017. Had the 5 day dose. Big mistake. I had a severe reaction. (there are certain groups who should NOT have the 5 day accelerated radiation). I finally got an Oncologist (not the one that did my radiation) to admit that she doesn't recommend the accelerated 5 day radiation because of the potential side effects for certain people. 2 weeks after my radiation, I had redness, heat, extreme soreness and all the skin on my breast came off which was extremely painful. Lasted about 3 months! I still have lots of fibrosis but that isn't bothering me so much. I also had severe rib pain for 2 weeks and then got sciatica for 6 weeks. The Oncologist called the rib pain "referred pain" but I did some research and found it was chondritis. I was a long 7 months of agony. I still have lots of inflammation. I did take the Pentoxifylline and vitamin E and it did help. After you recommended PT, I mentioned it to the Nurse Practitioner in the surgeon's office and she said they had a PT dept at the hospital and gave me a referral! The PT showed me how to massage and how to wear the pad properly to help the lymph-edema. That helped a lot!. I can't take ibuprofen so Tylenol is it. Recently, I did some research on inflammation and pain and found CBD. My son-in-law is taking it for his back pain and is off his pain medications most of the time. I recently found a company that makes CBD oil tincture drops and gummies because I can't take the oil caplets because of a blocked liver bile duct. I started the CBD about 10 days ago to help me sleep. Now I fall asleep faster and only wake up for bathroom breaks. It is slowly lessening the arthritic pain in my hip and back. One unexpected benefit is that the redness, heat and soreness in my breast is almost gone. The fibrosis is still there. I hope it eventually reduces the inflammation in my body. I wanted to check in and thank you again for your help and support on this forum. You gave me lots of helpful info and got me through a rough time. God Bless. Diane. (Tampa FL).

I know how you feel! I also wish I had never done radiation. I was told it was my choice. I feel I made ghe wrong choice. 22 sessions, the last five directly to the tumor bed. No broken skin during treatment but now, 11 days after, I am wrapped up in dressings and bandages with three open wounds and seeing nurses twice daily for cleaning of wounds and more bandaging. I am so discouraged and depressed. Hoping for no infection and doing Vit E and Vit C to help new skin grow. Noone told me this would happen. Minimized the skin burns. I wish I had walked away

Vivian4 - My last radiation treatment was 01/02/2019, I had 22 treatments Monday - Friday and my last 4 were boost. I am fair skinned, I did burn but was not too bad and then peeled. My RO prescribed a Triamcinolone acetonide, top 0.1 % Cream (gram) and she also had me order Oronine H Ointment - 100 grams (Solstice). She also suggested green tea. I would put the green tea in a small container with a good lid and add hot water (it would cool for the most part by the time my treatment was done). Before getting dressed I would dab the green tea bag on my breast then put on the Triamcinolone Acetonide. At night before going to bed I would do the same thing with the green tea and then apply the Oronine H Ointment. I really believe this made the world of difference. The green tea helps with inflammation also. I continued to apply the Oronine H Ointment after treatment as well. Hope this is helpful.

They didn’t tell me either and I had 33 radiation treatments but I was blessed because I didnt have any side effects except a bit of burning and fatigue halfway through the treatments.

OMG you ladies have suffered from the treatment. I did my own homework about short term and long term effects and the techs I had were awesome with their advice and compassion so I was braced for the worst.

I think we do get sucked into their so called compulsory treatments. For me I was determined to do radiation because I dodged chemo. I was so relieved I didn’t think twice about doing radiation. Probably just as well I didn’t know.

I do think the medical community is getting a wake up call from BC patients in particular about being our own advocates and daring to NOT do what they recommend. Some of them take it as a personal affront to their inflated egos.

What really irritates me is their blasé attitude when we do complain about the side effects. It’s like we just need to deal with it because the alternative is worse. I would like a front row seat to watch them handle it if they had to endure what we have and do.

I know a number of ladies who refused treatments only to have the doctor or nurse berate them for it. That’s some serious gall.

Diane