Nov 24, 2017 12:55AM runor wrote:
I find myself more easily winded too and I think, come on, Runor, you old goat, quit your huffing and puffing. So I blame it on the radiation. But I think it's cause I'm out of shape and lazy.
All Topics → Forum: Radiation Therapy - Before, During and After → Topic: Wish I had never,never done rads, DEEP REGRETS
Posted on: Jan 10, 2016 11:26PM
I just wanted to put it out there. Had 25 rad sessions. I was burnt to a crisp. I was even burnt straight through to my back. I had so much pain from the burns that I had to take narcotics, had to get someone to drive me around. I could hardly sleep for the pain on my chest/back. I had open bleeding sores all over my chest for 2 to 3 weeks after rads stopped. I could hardly keep all of the open sores covered, then they would stick to my shirt and when I pulled it loose the blood would run down my chest.
It caused me to have severe radiation fibrosis. I went to PT twice aweek for 3 months with no improvement or relief in that awful iron bra feeling. There are no words in the English language for how f*cked up it felt, numb, painful, itchy and tight even in areas not technically affected by either rads or surgery. The area on my back ached almost constantly, and I couldn't even reach it to massage it. I used to do these stretches with a pole that PT showed me. I would stretch and 10 minutes later it felt like I hadn't stretched in days. TIGHT, TIGHT,TIGHT!!!!! It was a type of continuous torture that went on for over a year.Two things finally helped, fat grafting 5 times as part of reconstruction, , and 120 sessions of Hyperbaric Oxygen Therapy. Rads wreaked my reconstruction efforts, had 4 extra surgeries because of radiation damage related problems.
I know that not everyone has horrific problems like me, but no one ever told me the real risks. The doctors made it seem like a very minor bit of discomfort was the expectation. The thing is, the doctors all know that some women have terrible problems with rads that ruin their quality of life FOREVER! And they are completely clueless who will wind up screwed over and in misery in perpetuity.
I don't even feel safer, makes me nervous for increased risks of secondary cancers just from having Chernobyl on my body.
I wish I had stood up to the whole insane juggernaut of the bc industry that hounded me into rads. I managed to avoid boost, but imagine how much worse my problems would have been. It bogles the mind that they thought this was a viable "treatment ".Log in to post a reply
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Nov 24, 2017 12:55AM runor wrote:
I find myself more easily winded too and I think, come on, Runor, you old goat, quit your huffing and puffing. So I blame it on the radiation. But I think it's cause I'm out of shape and lazy.
Nov 25, 2017 01:55PM FelineMum wrote:
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.
Nov 25, 2017 02:17PM Peetie1 wrote:
Thank you so much for the information! My RO/Team did not let me know that the fatigue could last for such a long time.
Nov 25, 2017 02:44PM - edited Nov 25, 2017 02:57PM by marijen
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
Nov 25, 2017 06:30PM runor wrote:
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.
Nov 25, 2017 11:00PM marijen wrote:
FelineMum, I can’t imagine why they would tape a mouth piece over your mouth, nor the feet bands. What about your arms, were they banded too? It sounds like an evil torture chamber. Definitely don’t go back. You need to tell someone who cares. The head of the clinic, your Mo and anyone else that you can think of. Those people should be fired. Did they go to lunch? It sounds like a cruel joke! You’re supposed to be able to talk to them when they leave the room.There is a speaker in the room or should be. What if they left the machine on? What did they say after returning? Print the info about the Xeloda and give it your MO. It seems to me they don’t keep up, she/he probably doesn’t know what you know. You have a right to be angry with that kind of treatment. When can you talk to your MO? Please let us know what happens.
Nov 26, 2017 03:27PM FelineMum wrote:
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.
Nov 26, 2017 03:42PM - edited Nov 26, 2017 03:52PM by marijen
FelineMum, What is wrong with these people? They shouldn’t have expected you to keep you arms above your head when you just had surgery, and for so long. I had a CT machine break for an hour, they let me get up and move around while I waited. You need to stand your ground about the treatment you got with whoever you talk to. Please keep us updated
Nov 30, 2017 10:14AM FelineMum wrote:
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.
Dec 3, 2017 08:03PM Peetie1 wrote:
Please forgive me if you already know this, but whatever treatment options you may choose/not choose you do have the option to get a second opinion. I didn't know this when I started my breast cancer journey, I just went to the breast surgeon that my primary care sent me too. There were options that I could have chosen for radiation that were possible during surgery that I couldn't choose after surgery. My breast surgeon never gave me these choices (intraoperative radiation, mammosite). I was so scared that I didn't even think about a second opinion before my surgery. After my surgery the breast surgeon sent me to a local MO who recommended a complete hysterectomy and an AI since I am pre-menopausal. This is when I decided on a second opinion, and I am so glad that I did. I have stage 1A breast cancer (no lymph node involvement), and my mammaprint is Luminal A Low Risk. A complete hysterectomy (uterus, fallopian tubes, ovaries) would be over treatment, and out of line with the standard of care. My second opinion took me to Cancer Treatment Centers. They told me that they would have recommended Intraoperative Radiation or Mammosite for me, but it was too late. They also could have given me a better outcome with my surgery (I now have an inverted nipple), and some nerve pain. Their recommendation for hormonal therapy was Tamoxifin only, no surgery (this is the standard of care). I mention this to you because I want you to know that if you are not comfortable with the care that you receive, or the treatment options that you are given, you have the right to request a second opinion. I was told that all insurance will pay for this second opinion. You can then decide what care team/treatment options are the best fit for your situation.
I am so sorry for what you have already been through! I wish you the very best of luck!
Dec 4, 2017 04:20AM FelineMum wrote:
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.)
Dec 7, 2017 03:51AM FelineMum wrote:
I meet with my RO on Monday. I want to ask the most relevant questions. Please, give me your suggestions.
Here's what I have so far:
1) What is the purpose of radiation treatment for my type of cancer?
2) What's the probability that radiation therapy will work for me? It if 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 therapy?
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 rads 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?
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?
13) Am I at risk for infections?
Dec 7, 2017 01:00PM Sara536 wrote:
I would also ask your questions of one or more radiologists and add questions about the equipment used to deliver the radiation and the training provided for the technicians. You are more likely to find state-of-the-art equipment in a large university hospital or, if you ask around, you might be able to find a community closer to home that has invested in a state-of-the-facility. (you wouldn't have to live there). Improvements in equipment design are being made that protect the patients. Avoid a radiologist who doesn't seem to want to answer questions.
I don't think anyone can accurately predict how your skin will react. My radiologist was so persnickety about which cream to use that she provided it to her patients herself.
Dec 8, 2017 03:49PM FelineMum wrote:
My revised list of questions. Thank you for the suggestions. If anyone ever wants to use this, please do. And more suggestions welcome!
Dec 8, 2017 04:54PM FelineMum wrote:
Dec 8, 2017 05:13PM Sara536 wrote:
I just recently saw my surgeon and was asking some more questions even though it was a year and a half ago. I had asked for a very wide excision because acceptable margins always seem a bit skimpy to me and I wanted a reduction as well. i apparently didn't make myself very clear because when I read the report, the tissue was sent to pathology and the margin was not clear in one area which she then had to "shave" before handing me over to the plastic surgeon. I asked her how the margins could not be clear since I had asked for a good 2/3 of my breast to be removed. She said she did what she always does, which is a standard lumpectomy, So the plastic surgeon would have lots of tissue to push around. AARGH! Then she said "That's what radiation is for - to catch any rogue cells." !!! We had never discussed whether I was planning to do radiation and, in fact the radiologist told me I really didn't have to do it (I guess because of low oncotype). Little did I know my surgeon was counting on radiation to clean up anything she left behind! Lucky for me, I obsessively insisted on radiadiation. Or maybe not so lucky if rads cause more cancer.
Dec 8, 2017 05:41PM FelineMum wrote:
I think the medical profession attracts some people with egos and an unhealthy disregard for others. I once worked at a medical school (staff; non-medical) and would listen to the students (staff; non-medical = invisible).
"What do you call the guy who graduates last in his class at medical school? DOCTOR!"
"Psychiatrists try to help the hopeless. Plastic surgeons are money hungry narcissists who want trophy wives to practice on. Pediatricians should just have kids and get a real job. ER docs are glory hounds and adrenaline junkies ...."
Etc. Etc. Etc.
Certainly not all the medical students said these types of things. Still, it was sickening.
Dec 9, 2017 09:40PM cookiegal wrote:
Literally the posts that break my heart the most are folks who had their QOL wrecked by SE's.
I do believe that doctors minimize side effects, but somebody is the unlucky one.
Does that mean rads is wrong for everyone, no. Was is wrong for you? For sure.
My breast swelling never went away, I eventually got LE, it was more than I signed up for.
It's not fair and I hope you feel as well as possible soon.
Dec 11, 2017 05:20AM FelineMum wrote:
I'm nervous. My appointment with the RO is today. I'm bringing my Mom to have an extra set of ears and to help take notes. I'm wondering about asking if I can record the appointment so I don't have to focus as much on taking good notes.
I feel foolish about worrying so much. I used to interview people as part of my job, and I was pretty good at it. On one level, I know if the RO won't answer my questions, then he's actually answered the most important one: Whether I want to work with him. And tossing out a couple questions I know the answers to, to see what he says isn't game playing. It's a gauge of many things, including a person's honesty and how they answer questions. i.e. my SO answers in vague nothings and warm, fuzzy nonsense. Or not at all.
For the RO, this is just another appointment. For me, this is my life, my health and maybe my death. No wonder the balance of power is so unequal.
Dec 11, 2017 05:35AM KB870 wrote:
Best of luck today. He shouldn't mind it being recorded either, somewhere on the site there is a suggestion to do that.
Dec 11, 2017 01:14PM - edited Dec 11, 2017 01:29PM by Sara536
I think you are right in looking for honesty and willingness to answer. That's how I chose my RO (aside from the fact that the facility had the best equipment money can buy thanks to a recent grant. However, honesty will expose you to the cons as well as the pros. I figure if an RO tells you the cons at least you know they are aware of them and will be trying to avoid bad outcomes.
Also, if they treat you and your questions with respect, I think it will be an indication that they will be seeing you as a sentient being - not just a bunch of algorithms.
Dec 17, 2017 06:33AM Mimie wrote:
I had cancer in my left breast and was worried about the effect of rads on heart and lungs. Even looked into proton therapy, but they were behind schedule starting to use it at my cancer center. I should have declined the radiation treatment. First the tech proceeded to give my a tattoo on my back bone without telling me, very painful, declined all the other tattoos, and they used tape which stayed in place very nicely. Why put us through more than we have to ladies? Then a week post rads I developed radiation-induced pleurisy, which landed me in the ER as I thought I was having a heart attack. Took two months to properly diagnose it, thankful for the tenacity of my cardiologist, MO, and primary physician. The RO was MIA, and very difficult to deal with. I still have this hideous ailment. On the plus side it’s taken my mind off cancer..
Dec 17, 2017 11:23AM FelineMum wrote:
I've been thinking about posting. The RO turned out to be a kind, caring, intelligent man who agreed with much of what I said and answered my questions, including telling me when he didn't know the answers.
He felt that my taking Xeloda during rads was unusual and said it was being pushed by my SO. He suggested I discontinue it during rads. Having 2 months left of the 6-month-long protocol and a consultation almost a month from now, I've opted to stay on X and put rads on the back burner. He wasn't thrilled with there being a delay, but did say the chemo meant I wasn't waiting without doing any treatment. i.e. better than nothing.
The RO told me things I've been asking my SO and a previous RO without getting answers. It wasn't good news, but most of it I'd already figured out on my own:
The RO advocates rads but seemed to respect my decision to get a second opinion. He had no problem with my taping our session. He agreed we should have sat down earlier, but since I was transferred from a different location, my consultation there was considered to be enough, despite changes in the treatment plan. My file's being kept active/open until I get the second opinion.
I meet with the SO this week. I have questions, although I don't expect answers. I've already asked her point blank about my unusual X dose and cycle "Oh, she does that with everyone." No, she doesn't. I asked her if lymphatic system involvement raised my risk of recurrence. I got a song and dance about "best case scenarios" and "what we always want is ...." That time, I listened more to how she doesn't answer questions than the actual non-answer since I did know what it was.
She gets hostile when challenged. After my BMX, when three weeks had passed and I hadn't seen my path report yet, I asked if this meant I hadn't been given all the relevant info about the findings. She had a diva-sized tantrum. ... and I hadn't been given all the relevant info.
It'd be normal to be dreading this appointment. But I just want to get it over with. I've gotten recommendations for MOs. And I refuse to be an unwitting, unwilling science experiment for someone who thinks they're god and doesn't have to follow the law - clear-cut laws about what patients need to know as well as when unorthodox or unapproved treatments are used.
As for rads, I'm leaning against doing them. It sounds like hell and I want to preserve the quality of life I do have. To me, life is about living. Existing isn't living. I'd rather have good days than more days.
Dec 17, 2017 11:41AM marijen wrote:
Thank you Feline, your RO sounds wonderful. Mine was quite the opposite and I hope I never see her again. So sorry you have such an aggressive cancer but at least you are mindful of being your own advocate and have educated yourself. It’s only 10 months since your dx approx and you have so much knowledge. Will you be trying to find a new SO, diva like tantrum is unacceptable.
I have often wondered if I have a positive node behind my breastbone as it swells and hurts sometimes. But if a PET Scan doesn’t find it, then I guess not? I had/have an occult primary with only one positive lymph node.
Well I agree that probably rads are necessary in your case. Please have faith there will be many new options in the future.