Terrified of XRT

Thanks!

Wanted to thank each person individually who posted a response to my "Terrified of XRT" but each of my responses just went to the bottom in succession. Am new to message boards, being a very low tech person.

Hi Funthing 42,

First off, the rads is making me crazy, for real. I just got discharged from the psych ward where I voluntarily admitted myself, because I was seriously thinking of ending my life. But first to address your concerns about rads: after all the treatments we have undergone (me 2 surgeries, you chemo + surgery + hormonal blockade; I start tamoxifen next week) the odds are (or at least what my RO, MO, and surgeon have told me) that there is a 50% chance the cancer is gone and 50% chance there is microscopic disease that needs to be "mopped" up by the rads. I was stunned when my breast cancer came back in Sept 2014. I did not have reconstruction so when I woke up 9/3/2014 with the same hideous marble size lump at the same 1o'clock position on my left chest wall (I did not have reconstruction) I knew it was the cancer. On 9/4/2014 excisional biopsy was done and though I have no boobs, it was the same IDC. To be told I had cancer a 2nd time was annihilating. My MO and surgeon from 2012 told me at every 3 month f/u that I was surgically cured and I believed them. I truly thought the cancer was behind me. It was recommended I do tamoxifen, but in 2012 I was age 42 and in pre-menopausal women tamoxifen is thought to cause osteoporosis. I also thought having done the bilateral mastectomy was good enough. My MO from 2012 strongly advised taking tamoxifen, but I sought 2nd, 3rd, and 4th opinions from breast cancer experts (2 from UCLA who helped develop Herceptin, 1 local MO). All 3 MO's said it was not unreasonable to skip the tamoxifen, because cancer was low grade and I did the bilateral mastectomy. The thought that I could be cancer free and the rads is overkill literally makes me crazy--I can't handle it. I started rads 12/9/2013. I finished the 45Gy and started the boost 1/16/2015. However the rads burn was so severe my RO said I could take a break. I saw my MO and surgeon, both of whom thought the burn was bad but that I should complete the boost--I only have 6 treatments left. My RO said the burn I have is unusually severe for the dosage I have received, and that if I stopped now, that since I did the 45 Gy I did the minimum, that the boost is "bonus" and if the cancer came back it would not be because I didn't finish the boost. Rads causes systemic myelosuppression and is a huge stressor on the body. I developed 1) shingles 2) fecal incontinence--I'm in the shower and suddenly see poop circling the drain---I didn't even feel it come out; had to wear a diaper for a week 3) pleurisy 4) angular cheilitis 5) fatigue to the point that walking from the kitchen to my bedroom upstairs causes shortness of breath 6) the burn pain from rads is so severe I've been persistently tachycardic for the past 2 weeks--heart rate 110-120, for which I'm taking a beta blocker as needed. But the women on this site have such strength, and have expressed that rads should be thought of as killing the cancer cells, not self-mutilation----which I TOTALLY feel is what rads is doing----something destructive and violent to my body. But, let me tell you what my RO said (in fact I've seen 6 RO's and spoken to 4): the benefits of rads far outweigh risks when one has a breast cancer recurrence. This is so hard to keep in mind, when everyday all we see are the physical effects of rads, and of course the discomfort. I'm using Miaderm, aloe vera, silvadene, and 1% hydrocortisone. It's barely helping. Although I am tempted to stop now, because of what my RO said, I just feel like if I don't finish I will regret it. And I am so angry that this cancer came back. I don't blame the 2012 team of docs. I have since changed docs and am at UCI--a National Cancer Institute designated facility. I too was BRCA negative. I am going to be tested for BART gene, which if positive means I'll need oophorectomy. The odds of me having this recurrence, despite skipping tamoxifen, was minimal due to prognositc parameters. I have seen or spoken to 10 MO's, locally, at NIH, NCCN, Stanford, UCSF, UCLA, City of Hope, and the facility where I am actually being treated---UCI, which has been fantastic. The team of cancer docs at UCI are excellent and if it weren't for them I don't think I would have made it this far. My stupid impulse to off myself was a moment of despair: I just have a hard time now believing anything, because cancer follows no rules. I've also had an avalanche of medical bills which will take the rest of my life (however long or short it may be) to pay off because I have crappy insurance. The rads is indicated in the NCCN guidelines for women who have breast cancer recurrence. Apologies in advance for any negativity or downers my response may have caused you. I did not mean to bring you down, but to tell you I know EXACTLY how you feel, that you WILL be ok and have got to stay positive--think that the rads is killing the cancer, not mutilating you. STAY STRONG!

WOW! THANK YOU for the wealth of info and links!!! I think you are on to something, that there is a connection with H pylori and breast cancer. I'm Korean. My blood test for H pylori IgG has been positive since 2002, but I developed symptoms of dyspepsia and heartburn 2013. My BMI is 18. When I got breast cancer the first time my BMI was 16, I was a strict organic vegan, and physically fit. I thought look what being "healthy" got me---breast cancer. So I swung the other way and became a junk food omnivore (all my faves like carbs, burgers, dairy). I do wonder if being vegan and therefore heavy soy diet contributed to my breast cancer. My mother had post menopausal breast cancer at age 60 after having taken exogenous estrogen for 20 years (she'd had hysterectomy and oophorectomy done at age 39 for what was thought to be a tumor but turned out to be a grapefruit sized fibroid). And thank you for saying I'm strong. I'm not. And I'm not saying this because I just got discharged from the looney bin. I contracted multi-drug resistant tuberculosis (MDR-TB) in 1996 from doing internship at NYU/Bellevue. That cost me 2 years of my life, sitting at home, having a public health RN come daily (DOT) to watch me take my meds. I was a full time patient from 1996-1998: home health RN coming MWF to administer amikacin IV, going for drug peak and trough levels, audiograms because amikacin can cause hearing loss, submitting weekly sputum samples, chest xrays, and of course the doctor visits. I was in my late 20's at the time, sorta young and stupid and just did what I was told. I kinda thought the MDR-TB was my one big "ding" in life and thereafter I'd be home free. I was so wrong. The breast cancer in 2012, the H pylori for which I've had 2 treatment failures (Serum Sickness Like Reaction, aka SSLR) to lansoprazole, the cancer recurrence in 2014 and now all the complications from the XRT, the shingles being the most painful, well, I can tell you right now I am hanging on by a thread, a shredded thread at that. I've got raging insomnia, anxiety, and above all profound fatigue which continues to escalate daily. Everyone tells me take it one day at a time. For me, it's minute to minute. But I learned a lot during my stay at the psych ward. Even though I'm physically weak and mentally/emotionally decimated, there is this teensy will inside me now to live, to fight and even if I lose the fight at least I gave it my best try. Although I have not had a million diseases, the few I've had have been real doozies. One of my docs mentioned there is only so many "hits" one can take before one reaches a breaking point. I am so beyond that. Can't even find a word to express it. Alrighty, I hope I have not brought you down but again, just wanted to share my story in relation to the interesting and highly likely connection between chronic infection (e.g. H pylori) and cancer. I would just like someone to tell me when the stoolfest ends (not life) but the parade of illnesses, side effects, toxicities, and sheer crap that has come my way. Celebratory dinner planned 2/2/2015, but it may be my last supper because I'm having EGD 2/3/2015 and starting tamoxifen. I'm extremely sensitive to medications. Are you having rads to the same area? Did they tell you the dosage? For example, I got 45Gy to my left chest wall, and am now undergoing boost--14Gy--to be done in 7 days. STAY STRONG!!!! We are not going to allow some microscopic bacteria invisible to the naked eye, ditto for cancer cell, to defeat us. We are going to fight back and expel them from our bodies. No free rides H pylori/cancer!!!!!!!! Hugs---Crabbycamper