Wish I had never,never done rads, DEEP REGRETS

I am growing a little concerned and pissed off. As time goes by since my rads ended, things are getting worse, not better. After lumpectomy I worked hard to get mobility back in my arm (should say node removal made the biggest mess of my armpit!) and everything was good. Then radiation. Then lymphedema set in. Now, I go to bed in pain and wake up in pain. There is a deep, grinding ache in my armpit and down the underside of my upper arm. Sometimes I can stretch or massage out the worst of it. I can't sleep on my stomach anymore because this boob hurts too much. This all got worse after radiation.

I tell myself the pain is from the lymphedema swelling the tissues.

I tell myself that I have to expect changes to my breast for up to a year after radiation.

I tell myself that I have to learn how to manage this and deal with it and get over it.

But what is really happening is I am freaking out thinking this terrible pain and nightly seizing of mobility is actually more cancer, spreading and rotting and my rising sense of panic is even worse than the pain. I HATE that my mind immediately goes there and I have to talk myself down. But what if I should not be talking myself down? What if there is really some problem? I could go see my regular doc but he is the most clueless of the bunch! I hate this. Thanks for the whine.

I have avoided pain meds but looks like it might help me sleep better if I'm not so stiff and achy. Blah. This is so not fun. I shall take some tonight, Marijen. I hope you continue to feel improvement as time goes by. I hope all of us do!

runor, I fully understand how you feel. I have been in pain for 6 months!! Breast is swollen, hot, red and sore. Last week started severe stabbing pain in ribs and back around to my spine and shoulder blade. She said it was "referred" pain from my breast. Don't think so. Feels like a broken rib!! I only take pain pills at night to sleep but they are not going to give me any more pain meds after this last prescription. Referred me to PT but first appt is 11/21 and PT said no way I can have her do the PT without me taking a pain pill first. She said it is too sore and will get more painful after each PT! They referred me to Pain Management Clinic but first appointment isn't until December 5th!! I can't take NSAIDS. Only Tylenol which does nothing to touch the pain. They did put me on Pentoxifylline ER 400 MG 3x a day. It is supposed to increase blood flow to breast to help with fibrosis and lymphedema. Plus take one vitamin E 400 mg a day. They also referred me to an accupuncturist. Haven't made that appointment yet. I am depressed and frustrated. Wish I had a mastectomy!! Praying for your pain to be lessened. Please keep us posted on how you are doing.

They wanted to do a lumpectomy, rads and chemo with me. After the lumpectomy I met the radiologist and off to the radiology dept to get measured and tattooed. In that time I researched radiation extensively only to find out if they had radiated me 20 percent of my heart and lungs would be radiated. Speaking with the radiation nurse she explained that the damage to my heart and lungs would not be apparent for 10 years. The risk was a major heart attack and lung cancer. At that point I opted for a radical mastectomy. The oncological surgeon sent me back to the radiation dept to speak with the head of the dept. He spent an hour with me and could not convince me to radiate my heart and lungs. The radiation therapist that I first met on questioning her about the power of the gamma rays said she did not have time to deal with me. Her reaction although hostile was more humiliating. I had my last measurement and was scheduled the following day to start. During my last measurement I laid on that table and balled silently. The tears just flowed. The tech kept saying try to stop crying and keep your chest still over the microphone. After they were done I was so mortified I hung onto the tech with my gown wide open just crying like a child making her promise that was just a measurement and not a radiation session. I have the tattooes but opted to have a mastectomy and reconstruction with tamoxifen. I have a holistic health degree consequently I can read medical research studies with ease and I am glad I could. It was me that discovered I would get radiated in the heart and lungs. The radiologists never told me until I alerted them I knew. I suspect they would of never told me. There is an international group called RAGE filled with thousands of cancer patients that received radiation. They were never told of the potential for disasterous Side Effects that they are now suffering from with no relief or cure.

I wish insurance would pay for massages too. It would do a world of good for us and it would probably save money in the long term

Lala, we better keep this quiet or we'll start a movement where therapy for breast surgery recovery results in being given several fitted sheets and made to wrestle them onto beds! I am making it a point to push myself ever so slightly past the point where things hurt, to keep them from binding up! Thanks for sharing!

It took me a year to get some energy back

Hello,

I don't know if this is the right place for my post. Please let me know.

I was scheduled to begin rads last week after a month of aborted simulations to decrease then deflate my non-cancer TE and equipment malfunctions. I had one treatment on Monday. Overnight, a herniated disc had a melt-down. I think if anything triggered it, it was my dry run. A machine broke and I was left on the table for roughly an hour, on my back, hands above my head, feet rubber banded together and a mouth piece in with googles taped over it. i.e. I couldn't move or ask for help.

I'm TN and currently on Xeloda. I'd gotten the impression that's not typical during rads, although no one has said anything specific. I couldn't return last week due to muscle spasms, so I researched instead. X and rads should NOT be mixed. The research is out there from responsible sources and published in respected publications, like The New England Journal of Medicine. MD Anderson wrapped up 8 years of data gathering in June on X, rads and chemo resistant BC. The findings haven't been published but early reports confirm that SE from concurrent X and rads are much more severe than rads alone. One smaller study found the risk of recurrence actually increases for those with HER-2 negative BC.

I'm cycling through sad, angry, depressed then back to sad. If I know this, then how can my treatment team not know it?

X helps TNBC. No evidence exists specific to the effectiveness of rads for TNBC. When I ask why should I do rads, the answer is: Rads kills cancer cells and you had a large tumor and lymphatic vascular involvement. Yep. But does it kill my type of cancer cells?

If I were to do this, I'd be a crispy critter with lung damage and possible heart damage. And it might not be for nothing - it might kill me.

I'm trying to figure out a way to calmly and reasonably, using facts not emotions, tell my RO and MO they're effin' nuts. Oops. That I will be continuing my course of X and not doing rads.

The main problem is I can't stop crying.

Peetie, My RO wouldn't admit to anything. I had nausea from the fourth day. She tried to tell me it was the billary duct tomy liver, US showed nothing. I figured out later the nausea was toxins from the dying cells. And I got cellulitis and breast edema six weeks after. Had to have antibiotics, prednizone, and IBC test, and twenty LEPT appts. Deny deny deny. As soon as I was out of there I never went back. Cancelled a follow-up with some kind of rads nurse. Talking to my RO was like talking to the wall. Told my MO I was overcooked and tried not to get mad about it. I don't like the inner feeling of anger, not good for anyone

FelineMum, your story is horrifying and I felt sick to my stomach reading it. No matter WHAT is going on in the 'control booth' someone should be checking in on you every few minutes and asking you to blink your eyes twice (or something) if you are in distress. My actual treatments took maybe 5 minutes. 2 minutes for two people to adjust me just so and 3 minutes for the zap machne to do its zapping. And only for that amount of time was my arm up over my head and the SECOND I was done a voice came over a pa and announced I could put my arm down. I cannot say enough good things about the people and the slick way it all worked at the radiation clinic. It is the most efficient medical care I have EVER received.

However, the effects of radiation itself are NOT clearly laid out. Underplayed. Swept under the rug. They say it's 'fairly well tolerated' but by the time you realize you have something to complain about, too late. My body was thinking about having lymphedema before radiation but radiation caused a full on lymphedema situation, which I will have forever.

As I look at having a second lump ( a big one, I can SEE it!) mammogramed and ultra sounded this Friday (Dec 1) I can tell you that I am thinking of having my boobs cut off. I am SICK at the thought. I wanted to keep my boobs. But after this radiation and the pain I've had since it ended and the cough ..... I don't know what I'll do. I can't even think.

But laying on a bed for an hour with your arm up is just insane and that alone could have triggered all sorts of unhappy problems. That does not sound normal at all.

Thank you, runor and marijen. I was starting to feel like a hysterical little girl. Both arms were above my head. I'd had carpal tunnel surgery 3 days before that incident. My right arm (good arm - herniated disc affects left side) was in a splint and it made moving hard. I also had something above me (equipment?). I was wiggling my feet and left hand. They originally scheduled me for this the day after my surgery. When I cancelled, I had to explain that my surgeon insists that for 24 hours after surgery, patients rest because there's still anesthesia in their systems.

My gut's been shrieking "No!" to radiation for months.

I had a bilateral mastectomy and 3 nodes removed. One node was positive. I've got the articles printed, along with a list of questions. Tomorrow I start scheduling office appointments.

An update: I'm in the process of getting a second opinion from what's considered the best cancer center in my state. I have an appointment with the RO in December. I don't have a MO - I've been with a surgical oncologist this whole time. Regardless of anything else, I think I need an MO. I also have an appointment scheduled with the SO in December.

No radiation treatments until or if I say so.

I saw my spine specialist this week. I do have damage to a vertebrae - a different location than the herniated disc. My focus right now is on managing this pain while planning for the future. I intend to enjoy the holidays as much as possible. To be at my grandma's 90th birthday party. To skip a family Xmas party I don't like without guilt. And have another carpal tunnel surgery; get spine injections; and refuse to give up my quality of life and overall health without a damn good reason.

Peetie1:

Thanks for your reply. I'm sorry some of your experiences were so negative. I will be getting a second opinion. I wish I had earlier in this journey, but hopefully late is better than never. I'll be going to University of Michigan's Breast Cancer Clinic. I should hear this week about setting an appointment time. U of M will be looking at my case from Day 1, starting with my biopsy slides. When you live in Michigan, the best possible medical care is at U of M. Living 3+ hours from there, it never occurred to me to go there until a chat agent on cancer.gov suggested I look outside my immediate area. (By that point, I wanted a second opinion, but I didn't know where or how.)

Great list FelineMum. Be sure to take a notebook with you and take your time writing down your RO's answers. I would add - ask about increased risk of breast lymphedema and Delayed Breast Cellulitis.

My revised list of questions. Thank you for the suggestions. If anyone ever wants to use this, please do. And more suggestions welcome!

• 1.What's the purpose of radiation for my type of cancer?
• 2.What's the probability that radiation will work for me? If it works, what are the chances that the cancer will come back?
• 3.What are the chances that the cancer will spread if I don't have radiation?
• 4.How safe is it to have radiation while taking Xeloda? Have you seen the studies published in ... that say ....
• 5.How and when will you know if this is working?
• 6.How many treatments will I receive and for how long?
• 7.What side effects are possible - both short-term and long-term? Best and worst case scenarios? Will using a bolus or having boosts worsen my side effects?
• 8.What are my treatment options? Is the Canadian Protocol used here?
• 9.How soon after starting radiation will I experience side effects?
• 10. How can I expect to feel during treatment and in the weeks following radiation?
• 11. What will my skin look like after radiation treatments?
• 12. Will I have skin sores? How should I treat them? How much scarring could this cause?
• 13. Am I at risk for infections?
• 14. Will radiation raise my risk for lymphedema? Delayed breast cellulitis? Thyroid problems? Heart problems? Breathing problems? Skin cancer?
• 15. How old is the center's equipment? Is it considered state-of-the-art? How is it maintained? Why have I seen so many equipment malfunctions in such a short time?
• 16. What type of training do the therapists receive? Do they need any type of certification to do their job? How are they supervised?
• 17. What type of training do the dosimetrists receive? Certification? Supervision?
• 18. What role do ROs play in daily treatments?
• 19. What's the protocol if something goes wrong in a treatment room?
• 20. Is this facility short-staffed?