What to expect from treatment and ways to cope with side effects.
Posted on: Jan 11, 2016 12:26AM
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
Posts 1 - 30 (554 total)
Jan 11, 2016 01:30AM - edited Jan 11, 2016 01:33AM by marijen
macb04 I'm so sorry! That is terrible! Would it be possible it was the machines or the techs? Why didn't they stop when it was getting so bad? Something is wrong here. I appreciate you letting us know how bad it can get. I think when it's my turn I will just stop if it gets out of control. Wish there was help for you to heal 100%
Jan 11, 2016 10:34PM macb04 wrote:
This happened at SCCA. They are supposedly state of the art. The doctor gave me Miaderm after I started burning, little sample packets. She told me to put it all over my chest at night, on my open sores. I went home, and in a blind panic ordered 2 tubes of Miaderm, overnight shipping for $80.00, from Amazon. They came the next afternoon after rads. Said "NOT TO BE USED ON OPEN WOUNDS " Then I asked the rad doctor, Why did you give it to me, if it can't be used on open wounds.. ?????. She said she forgot about that, but that I was very lucky to be the first patient at SCCA to be able to use this cream. So I then called up the manufacturer and asked, "How long has Miaderm been on the market, ?.? They said 5 years!!!! The stupid f*ckers gave me a cream to prevent burning after I was already burnt to a f*cking crisp. Did I also mention, they would draw on the open sores with a Sharpie? It was f*cking sick what they did to me. PM if you want the stupid, brainless moron's name.
SCCA, none of those C's stand for competence, or compassion.
Jan 12, 2016 02:04PM - edited Jan 12, 2016 03:58PM by Kicks
Jan 12, 2016 02:14PM quinnofmn wrote:
I burnt at the end. Red raw chest and RO could barely look at it. I too think that my thyroid was damaged as it quit working and I am now on synthroid. I hope going through this has lessened my chance of recurrence.
Jan 12, 2016 02:17PM WinningSoFar wrote:
I've had rads twice and never had anything like what you have described. I wasn't even barely pink. It sounds absolutely awful. I'd love to know what percentage of radiation patients have these kind of burns. My sympathy to you for enduring that torture.
Jan 12, 2016 08:58PM macb04 wrote:
Seattle cancer care alliance, when I complained about the poor care I received, they just directed me to their complaint department who then sent me a heartfelt form letter saying they were sorry I wasn't happy with my "care". Like they gave a crap.
Did anyone else have that metal chainmail thing put on their chest along with rads? I think that made it much more severe the damage they did, which is permanent.
Jan 12, 2016 09:14PM ElaineTherese wrote:
macb04, how did your most recent reconstruction effort go? Well, I hope.
For me, rads was just boring. It was every day of the same small talk with the same rads techs. I got pink and sore, then rads stopped and my boob recovered.
Jan 13, 2016 01:32AM GG27 wrote:
I burned terribly til my skin was black & peeled off. They did use a bolus on me, the RO said I wasn't the worst she'd ever seen, but right up there in the top 3. She prescribed a burn cream that worked quite well. I also did saline soaks every single day to ensure no infection & ease the burning. But within a 3 weeks of rads ending, it was getting better. I had bilateral lat dorsi recon a year later & it's all good. GG
Jan 13, 2016 01:50AM Artista928 wrote:
I don't understand that if it's looking that bad that they don't stop rads. With chemo many end up with reduced doses at the end because the SE are so bad on them. The same should be true for rads. In April I start rads. I will opt to end it if it starts looking pretty bad. You have control over your care too.
Jan 13, 2016 02:04AM marijen wrote:
macb04, do you have copies of all your records and the doctor's notes? Maybe you can to take them to another clinic for a second opinion on what exactly happened in your case. The metal thing sounds odd too. You need to resolve this. i worry for you
Jan 13, 2016 05:31AM BrooksideVT wrote:
Artista, it is very normal for an RO to give you a rads break if your skin issues progress beyond the normal. I had a peculiar reaction to my very first session--skin got pink and hot, which is normal after about two weeks, not the first session. My RO gave me the next day off, laughing that she usually did not do this after only one day. After that, things progressed perfectly normally. I was so comforted by knowing that days off were available if needed!
Macb, I am absolutely horrified. It sounds as though something went very, very wrong, and I agree with Marijen that you should provide your records to, and discuss them with (for starters), your MO, your pcp, and the head of your cancer center.
Jan 13, 2016 07:06AM april485 wrote:
Request that you speak with the HEAD of the Radiation Oncology department and then tell him/her what happened to you and what are they going to do about it? You should be given and explanation as to how you ended up with all of the issues caused by the terrible course of radiation that you had as well as the satisfaction of them telling you they messed up by not stopping it when it got really bad. In other words, they need to APOLOGIZE to you, in writing.
You also might want to contact an attorney if your breast does not heal. Sounds to me like they did something very wrong as your situation is not the norm from all I have read/seen/heard.
I did a clinical trial of high dose, 2x a day rads for 5 days (partial breast, not whole breast) and I did not burn at all, even with very high doses so something definitely went wrong here.
Hugs and hope you feel better and that they make it up to you somehow.
Jan 13, 2016 07:38AM AmyQ wrote:
What happened to you should not happen to anyone. This is horrifying and wrong. I hope you documented your injuries with photos and a video. While you're at it, go back and journal every detail as best you can. This sure seems like malpractice in my opinion.
First and foremost, I hope you heal completely, bit in the meantime, I'd see another RO for a professional opinion, IF they're willing to opine against a colleague.
Lastly, I am very sorry this happened to you, but don't let regret overwhelm you. I do hope a major lesson can be learned at that medical center and by the staff who did this to you so it doesn't happen to anyone else.
Please keep us updated on your recovery.
Very very gentle hugs to you.
Jan 13, 2016 07:39AM dtad wrote:
macb04 This is a great example of docs not informing us about possible serious side effects with breast cancer treatments ! I understand that your case is uncommon but it obviously can happen. IMO we should be informed of all possible se, especially the serious ones in our treatment journeys. We all need to make informed decisions and not go into treatment blind. We must remember that the final say is ours Not The docs. That's not to say that we shouldn't respect their opinions. So many docs differ in their treatment plans and such that ultimately the onus falls on us to make the final decision. Good luck to all of you...
Jan 13, 2016 11:56AM - edited Jan 13, 2016 11:58AM by labelle
Not sure that I exactly regret having RADS. I still believe the reduction in local recurrence is significant enough to merit its use, but I really wish they had been more honest about the possible side effects. My radiologist said it would be like a sunburn (so not true in so many ways) and played down a lot of the SEs that could happen.
I ended up with cellulitis, an infected and walled off seroma, leading to emergency surgery, hospitalization with IV antibiotics, an open wound that took months to heal and left me with another scar and an indent (much more noticeable than my lumpectomy scar) and now have been told I have edema of the breast due to radiation. What I do regret is that when RADS starting going bad (my skin began sloughing off, oozing and bleeding and my breast became very, very swollen) partway thru RADS, I let the radiologist pooh-pooh me with "don't worry, it is all normal and fine" instead of heading off to the breast surgeon ASAP to show him what was happening to me. I found the radiologist to be the least forthcoming and honest about side effects of all my doctors and not very good at treating SEs or diagnosing problems.
My advice is if things start going south and the radiologist isn't paying any attention (mine barely looked at my breast and paid no attention even when I told him I was running a fever and the breast was pretty obviously infected) see another one of your doctors ASAP. I now know I could have taken a break of a few days from the RADS to let my skin heal (might or might not have helped ) and I sure as heck wish I'd skipped the boosts (5) since my margins weren't anything like close - the surgeon took lots of extra tissue due to imaging that looked like I had DCIS around the small tumor but final pathology showed no DCIS. RADS: use with caution.
Jan 13, 2016 01:49PM macb04 wrote:
I wrote this posting because I currently have cellulitis number three on the side that had rads. Never any infection on the nonrads side. It brought it all back, how heartless and uncaring they were at Seattle Cancer Care Alliance (SCCA ). I usually just refer to it as Cancerland. I did speak to the RO And her boss, they told me that all the problems I had happened sometimes, that they had done nothing wrong, and that if I didn't like their care to go somewhere else. I spoke with a lawyer two years after diagnosis, had 5 useless mammo's that said I was fine, I wanted to sue the mammogram place. I was told, by two separate law firms, that you can not sue for malpractice in Washington state more than 1 year after the date of diagnosis. I can't afford to hire a lawyer, and can't find any to take it on contingency, so I am out of luck again.
I even got the flu during rads with a fever of 100 and a severe cough, they never gave me the option of stopping, said it would cause more problems if I took a break or stopped. I had tissue expander in place and then they used this metal thing that looked like chainmail, I think it was called a metal compensator. It was always cold on my bare chest in a cold room, and when I had the fever from the flu they wouldn't even heat it up for me. Had blankets on my legs, but it wasn't nearly enough.
I am sadly resigned to the tightness, but I am desperate to keep this implant, I am so resistant to antibiotics that I am afraid if they took out my implant and put another in that my skin might not heal and then I could really get a severe infection. I have had fat grafting 5 times and 120 sessions of Hyperbaric Oxygen Therapy at a local Wound Care center. My skin is as good as it gets, was stiff like boot leather, now closer to a nice Italian shoe leather. Problem is the microvascular damage that messes up my healing. The infectious disease md said to see if my fevers come back when I stop the antibiotics next week. I am already having some low grade fevers, and these are supposedly the "right" antibiotics according to culture results.
I feel like a crime was done to me, I know I am not alone, but it never feels better to hear others are suffering too. I am just trying to escape with my mind and heart intact. This is why I do not trust doctors anymore and avoid them like the plague.
This is my way to vent, I am screwed and there is nothing I can do about any of it. I hope I can suceed at reconstruction and just go on to live my life with some peace and grace. I just want to be left alone, no more bad sequelae from the dishonest, money grubbing bc industry "care".
Jan 13, 2016 03:48PM Penzance wrote:
Macb04 and Iabelle, I am so angry that this happened to you. At least you can try and prevent it from happening to others. I am really grateful as it could have happened to me too. I specifically asked my first breast surgeon about potential side effects of radiation, including burns, lymphoedema, muscle damage etc. She was absolutely adamant that 'these things no longer happen today'. Well, you never know how your body's going to react, but the fact that she lied to me was a definite turn-off.
One reason I was wary of radiation is these patients' stories I had 'stumbled upon' when studying a computing course: 'The Machine stumbles' in 'Rawlings, Gregory J. E. (1996), Moths to the Flame: the seductions of computer technology', pp. 135-6), I found it online at the below address:
It's a series of incidents which happened at the East Texas Cancer Centre back in 1986, with a state of the art machine... which was too complicated for the radiologists to use correctly (the computer programme could do things they had no idea it could do. I have seen this at work: someone forgets to upload data to run a programme, say, a mailing list, the computer goes and fishes out the mailing list, not from the last time the job was run 6 months previously, but from 18 months ago. The IT guys had no idea how the computer did it, as the old mailing list should have been 'deleted' once the job was processed).
I also found the below:
I wonder if, in your case, the machine could have been calibrated incorrectly. In any case they should have adjusted the dose of radiation, or given you days off when you started to burn, as the effect of the rads is cumulative. My second surgeon is not so enthusiastic about 'burning' me as I am so thin. I did note the potential damage to the thyroid gland too, very thankful for that. I found someone who got permanent hair removal on the lower half of her skull. She didn't mind that much as she was very ill and eventually passed away, but like you, she never knew this could happen until after it had happened... As I have a lobular, I would not be able to use the rod (the metal bar you've been speaking of I think), but would have to be 'burnt' absolutely everywhere... Not quite sure how I'd be able to resume kayaking, horse riding, aerobics, violin playing etc. with a constantly painful and stiff and swollen upper body. Getting in and out of clothes, let alone wetsuits, must be agony.
Hyperbaric therapy is great, I saw a feature on its use to help healing ulcers in patients with diabetes. I guess you will have tried aloe vera for your skin? I hope you will both get a bit better eventually. Lots of love.
Jan 13, 2016 04:05PM - edited Jan 13, 2016 04:08PM by ChiSandy
macb, so sorry this has been happening to you. Haven't practiced in WA since '78, so can't comment on whether it's the original BC diagnosis or the diagnosis of the current complication that starts the statute of limitations running (and if I did so without meeting a client and getting a signed “this does not create an attorney-client relationship" letter, my legal malpractice carrier would have a cow). You might want a second opinion from a non-UW facility such as, say, Swedish or Virginia Mason (or even out-of-state from UCSF) as to whether your treatment did not meet standard-of-care. I know that doctors are thought to circle the wagons and be reluctant to call out their colleagues' missteps--but most will draw the line when it comes to blatant incompetence and malpractice, and will testify in order to both bring justice to the patient and protect the integrity of the profession. You want a personal consultation and exam, since an actual treating physician's testimony will be more credible than that of a hired-gun “expert" who never had a clinical relationship with the plaintiff.
Jan 13, 2016 04:40PM cuddyclothes wrote:
I am so, so sorry you've been put through all of this! I hope ChiSandy's advice helps you and that you continue to heal. My rads were basically uneventful but my RO poo-poo'd anything I said about having side effects. The post-radiation fatigue is still really bad.
It is a crime that doctors never tell you what you might be in for. And then don't pay attention when things happen! Again, I am so sorry.
Jan 13, 2016 08:52PM - edited Jan 13, 2016 09:02PM by macb04
Yes, ChiSandy, I suppose I could look into it, but I am worn out by my current mess, wondering if this cellulitis will resolve. I am just glad that I could tell what happened to me so other people could be warned. Even if they said sorry, I am sure I would have a heck of a time even getting even one dime out of them. As far as they are concerned, money flows one direction, from me to them, not the other way around.
My skin is intact now, but my shoulder/chest and back are tight, a daily reminder. I just pray that I will not need more sugery, and will suceed in keeping my implant. Cross you fingers for me. I finish the two antibiotics next Monday, and just hope the fevers stay gone.
Thanks again to all of you for your kind support, it means alot.
Jan 14, 2016 06:39PM sas-schatzi wrote:
mac, get the most qualified, meanest son of a bitch lawyer, and go for their nuts. Anyone working with radiation knows when someone's burned bad. Never heard of any description like yours. Make them bleed.
Jan 15, 2016 01:26AM macb04 wrote:
I wish I could figure out how to do that, make them suffer for what they did to me, sue them till they bled. I saw my records once when they left my chart in the room at Hyperbaric Oxygen therapy clinic while I was waiting to see the md.The RO at SCCA never even wrote down that I had open sores on my chest, by like the 4th week. I didn't know that. I thought at the time that they were accurately writing down what my skin was like. They made me see the RO every week. I never took photos or videos. I was too horrified and I barely looked myself at my chest. That kind of moist desquamation is a grade 3 or 4 radiation dermatitis, they didn't say that, I just figured it out from what I read. They knew they were completely f*cking me over and they just covered it up. I don't have any records, hated everything done to me, so I had a bonfire of all the medical records.
Mar 7, 2016 01:15AM macb04 wrote:
Well, had reconstruction surgery again Tuesday 3/1/16, to replace my implant which was too small/too flat after I had my implant exchange August 2015. Didn't match my right breast, drove me crazy, to have this poor a result after all my miserable surgeries. The thought of staying lopsided forever just ate at me, so went from 420cc moderate profile to 495cc high profile. Much better balance and symmetry. Had an infection the day after surgery, had to have change from Cephalexin to Cipro and Doxycyline twice a day. This worked, fever finally stopped, but at what cost to my gut, diarrhea pouring out of me. Couldn't take it any more, so stopped the antibiotics. Taking Tincture of Olive Leaf/Oregano oil, Oregon Grape/probiotics and getting Intravenous Vitamin C tomorrow to kill any remaining bad. Hey and I actually kept all ofmy dinner for the first time in 3 days. Doing 10 HBOT treatments to make sure I heal, which, by the way, I wouldn't need if not for the incompetence of the RO at SCCA crucifying me with excessive rads.
Apr 20, 2016 12:15AM macb04 wrote:
Seeing many women not sure getting rads was a good choice. Wish the RO at SCCA had been honest and given me a full disclosure of all the possible side effects and long term consequences. It was my right to decide what I wanted to do based on accurate information. Paternalism is , unfortunately, still alive and well at Seattle Cancer Care Alliance.