Wish I had never,never done rads, DEEP REGRETS
Comments
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Yeah, I regret the radiation. Right after I finished last summer, the study came out where there was debate about its usefulness for my cancer..
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I do understand there are other treatment options depending on your diagnosis. Although rads after ALND has probably increased my lymphadema, I am glad I had that option. Since I'm ER/PR negative, and HER2+, there wasn't any other follow-on treatment for me once the Herceptin was done. I did have some cording which was easily taken care of by my LE PT. I also have some radiation fibrosis off & on, but if I keep doing the exercises I was given, the scar tissue doesn't settle or contract. It's like a rubber band. If you don't keep stretching it, the muscles & tissue will retract.
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Hi MinusTwo, I think that it is great your rad fibrosis wasn't severe, but I had really severe damage. I did painful PT twice per week for months. I stretched at least 4 times per day. Each time I stretched it felt miserably tight, as if I hadn't stretched in days. It restricted my range of motion, something the dishonest woman at SCCA never told me could ever happen. I had no improvement despite months of effort by me and the PT's I saw. I only got improvement after getting Hyperbaric Oxygen Therapy, alot of HBOT.
That is why I started this thread. I wanted women to know the real horrific consequences still happen every day to women who trusted their md's in the cancer industry, to give them all the facts so they can make an informed choice. All the people I saw were highly recommended, despite this they still gave me substandard care. When I complained I was sent a form letter saying they were "sorry I wasn't happy with my care"
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macb04 - I'm so sorry about the complications & side effects that you had. You are right of course that all the way through a cancer journey, most docs don't emphasize the potential side effects. Frustrating for those of us who actually DO want to know the possible complications ahead of time.
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wow I am glad I found this tread.
Macb I am so sorry about all you had to endure most of all I am sorry I had to do rad. Me too I was misdiagnosed and my c tumor was very aggressive so after bmx with nipple sparing surgery my margins were not clear nor was my lymph node so I was told that rad was the way to go. It's been almost 4 years and I am still dealing with internal scar's due to rad. Last thing my pt is trying now is silicone cupping and let's say is not a walk in the park so painful that I hope it works. I must say the massages did hurt a lot but helped to lose up the skin a little not much which still gave me release I had so much disconffort from rad it was driving me mental. I then made an appointment with the plastic surgeon in 2015 and he said oh ya I see the thighness but I think we can wait another year then see if it gets worse. So basically at that time he said I am not willing to fix it yet .it needs to get worse. So I waited off course it got worse so I went to see him again and his answer was .well rad sucks. Yes that is what he said "well rad suck" but it is too risky to have it remove by surgery cuz that meas we must change the implant and that is a risk of infection bla bla bla. So no can't do. I then asked him so then what can I do to make this better or to at least stop from getting bad? He said I will refer you to Physio therapy they can do wonders with massages. Now I go every Thursday is been well over 2 months and they are now trying the cupping thing. I also made an appointment with my bs I just want her opinion regarding the scar itself it feels so hard like a rock like my original tumor so I hope she can easy my mind tell me it is a scar and no an actual tumor .
I just wanted to say if my margins were clean I was prepared to refuse rad. The doctors wanted me to do rad from day 1 even before the surgery they told me their plan was after surgery I was to do 6 weeks of rad regardless of my margins. I didn't say anything to them but I told my sister at that point that once I had the pathology report and margins were clear I was giving them the finger .yes I was ready to tell them off. What was my bad luck my report did not clear me. Instead they wanted to take the rest of my lymph and I refuced I said no. I am taking my risks. I said if I am having rad then no more surgery. Rads ll have to cover the lynph too. And that is what I did. I also refused to take tamoxifen and any other god dame drug so here I am. Just dealing with a massive scar and iron right bra cup . Neck and back sore and all that we rad glas know about.
I wish your tread Informs others and I hope people could get better luck and better information before they allow their doctors decide for them.
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Hello Minus Two,
Sorry, first seeing your post. LOL! The RO ( I saw two), recommends rads. The MO ( I saw two), recommends hormone rather than rads, and the Gyn who didn't detect the lump just two weeks before going to breast surgeon, will be an ex-Gyn.
Roche -
It's concerning when people disagree on your course. That's the reason I fired my first team. They disagreed on whether or not I should have had surgery first or participate in a study. Went with my gut and had the surgery. It was a freaking 5.5 cm tumor. I wasn't going to wait around with that in my chest..
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Roche- Don't dump the gyn just because he/she didn't dectect the lump. Some are not detectable by palpating. Mine wasn't. Not by me, my gyn or my RO even when we knew where to look. Thank God for mammograms
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Actually I HATE Mammograms! Stupid useless, cancer causing nonsense. I had 5 useless mammos, that all said I was fine. Won't trust that sh*t ever again
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mac - I can understand your frustration but mammos are not useless. I thank God for them. That's how my cancer was detected.
Diane
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I think people who have dense breasts should automatically forget the mammo and do an u/s instead. Save $ and a radiation.
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My lump was never felt by anyone but was found by mammogram too. I left the imaging center who couldn't manage to hit the lump in a biopsy and then wouldn't call or return calls for the results. Then I walked out of a surgeon's office and said no way I'd go back to him. I went to Mayo Clinic in Jacksonville and couldn't be happier
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My 20th annual mammo was the one that found my tumor—no palpable lumps, and my breasts are fatty rather than dense.
And you should know that how easily you sunburn has absolutely no bearing on what skin effects you will have from rads. Not even skin color. That’s because radiation burns, unlike sunburns, aren’t “burns” at all. A burn or sunburn is an injury that starts at the epidermis (or if 3d degree, the dermis). The more melanin in your skin (the darker it is) the more protection you have from the sun’s UVA & UVB rays, which cause tanning, burning and aging and the less likely you’ll be to get a sunburn (but you’re still not immune, no matter how dark your skin nor how easily you tan). But radiation damage is from the inside out—it happens first in the targeted area well below the skin and makes its way to the surface. What makes it look & feel like a burn is that normally, your body is constantly producing new dermal and epidermal cells to repair & replace the ones that continuously die off—an extremely gradual and imperceptible process. But when that sub-dermal tissue is damaged by radiation, its ability to make new skin cells is impaired, which is why skin replenishment is disturbed or even halted for awhile.
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Mammograms are worthless in very dense breasts like mine. I religiously did my mammograms every year believing that they would detect BC before I could. WRONG!!! My doctors never told me what it means to have dense breasts. It means that I have a greater risk for breast cancer, it means that mammograms won't find a small lump. It's like looking for a snowball in a blizzard. I found my .8 mm lump 3 months after my mammogram. Good thing I was doing an occasional self exam
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I read somewhere that 40%of women have dense breasts, especially in premenopausal women. They NEVER said one word to me about how inaccurate mammograms would be for me. That is CRIMINAL, not to give me all the facts. I and all those hundreds of thousands of women had THE RIGHT to that information. They probably increased my risk of , bc. I know those awful mammograms made a lot of profit for somebody, but they did me no good at all. The cancer industry profits to the tune of something like $14 BILLION in mammograms PER YEAR.
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My biopsy and mri were inaccurate in telling bs just how big my tumor was. Biopsy said 2 cm. Mri said 4 cm. Sx path said 7 cm. I could be angry about how inaccurate it was. I mean at 2 cm or some with 4 cm do lx instead of mx. Had I decided to do lx I know I'd be going back to do mx with the 7 cm result. Nothing is accurate until the sx path.
I think if you tell people up front something that is so painful to do is not always accurate, esp for dense breasts, that maybe some women would bag getting checked. No one likes mammos. I avoided it for a few years because it did hurt so bad. But as a result, here I am. I think if you have dense breasts and are concerned about mammo accuracy you should talk to your doc about doing an u/s like I already mentioned. Had I done the annual mammo for the 4 years I skipped perhaps this would have been caught much sooner and I would be at a lower stage. Maybe not. But who wouldn't want to go ahead and do it even if it may not be accurate in the event that it is or almost is. Cancer is not something I personally want to mess with. Give me the test. I say that now. Detecting early is important and I'm guessing more times than not it does pick up on things. I don't know costs of u/s v mammos or how all this works, but something tells me it's not a simple ripping us off thing even though it's easier to process this shit if we can blame the industry. I quit doing that. Used to but what's the point. I focus on being proactive in my own care. I never go to an appt unprepared and have done my research. Sometimes I've said things that the doc didn't think of. I used to get angry that wow, she didn't know this???? But no one is a computer or machine, and we are all learning and evolving, even cancer docs- esp cancer docs since this is such a complex disease.
Forget the past for it's gone. The future is a mystery. But we do have the present. There's a jingle that I can't quite get down but it makes sense if anything for keeping our sanity.
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Something like " history is history, the future is a mystery, the present is a present, you could call it a gift"!
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I'm saying also that I did receive a letter saying I had dense breasts, but that was meaningless without knowing what that meant. None of my doctors explained what that meant. And, because I trusted my doctors to tell me if I should be concerned about any aspect of my health I did not look into it on my own like so many women out there today getting the same letter I did. Many states require that patients get a letter stating that they have dense breasts. They are not required to explain what it is or what it means. Without getting angry about the past we can't make it better for women now and in the future
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Thank you ChiSandy! That analysis was very informative!
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Suz-Q I've never heard of getting a letter. I'm in CA so maybe it's this state. I knew about dense breasts because awhile back a mammo tech commented on it. I got sent to u/s because it picked up something small but turns out it was nothing. I didn't really piece it together that dense breasts means cancer could be hiding and scans may not be able to pick it up. Like I said, 3 cm of mine was very well hidden from biopsy and mri. I view mammo as something that can pick up if something looks off. That's why if it does then step 2 is u/s and on you can go from there. I wouldn't be surprised if there is someone out there who now has bc where not only mammo didn't find anything but neither did u/s or mri. I know from my own that the biopsy doc when he said he's never seen anything like mine in the 35 years he's been doing breast biopsies (due to very wild/weird images) that thinking about it, I'm not surprised 3 cm wasn't found anywhere before sx. I give huge thanks and kudos to my amazing bs who got clean margins knowing that this thing was shaped more like dumbbells. Wrote rave reviews on him and recommended him to everyone in Cali who asks.
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The only time I have heard about my extremely dense breasts was after I was diagnosed with cancer. Now everytime I have a mammogram I hear about it.
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mac-
I am sure you've seen this, but posting for all, especially those with dense breasts. It's one of the best TED Talks I have ever seen. Deborah Rhodes addresses the politics of detecting BC very succinctly.
Not to be missed
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I don't know if you read my initial comment when I started this thread, but I HATE every damn thing to go with rads, including those dangerous, highly inaccurate mammograms. I was burnt to a f*cking crisp and spent over 200 hours in Hyperbaric Oxygen Therapy to finally make my skin halfway normal. I have to take Pentoxifylline and Vitamin E every damn day, probably forever, because otherwise my skin/ arm and chest tighten up from the f*cking radiation fibrosis. I am still boiling, VOLCANICALLY angry that the medical morons at scca in Seattle caused me such grievous harm, and never said one f*cking word that this could happen. They are incompetant, lying sacks of sh*t, and that is what this thread is about.
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mac~ I am so sorry that you are still hurting. How the hell did this happen to you?
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Hi gardengypsy, thanks for paying attention to my words. I felt like what I was saying got lost, that my point was ignored in favor of lauding the bc industry. If someone wants to say how grateful and happy they are, then they should make a thread about that. Don't ignore my experience, don't ignore how I suffered. I would not disrespect someone elses experience, please don't downplay or disregard what happened to me.
I went to a highly recommended medical center, seattle cancer care alliance, which was a combination of fred hutch and university of washington. They were really uncaring, and made all sorts of mistakes. In terms of when they fried me, I saw later when I saw the records at the Hyperbaric Oxygen Therapy place, that they didn't write one word about how I was severely burnt. The moist desquamation, started by the 3rd week and got worse and worse. At the end they were drawing on open sores with magic markers.
It disgusts me how this is hailed as"world class cancer treatment " When I look through these boards over the past few years I have seen over a hundred stories of horrific "care " and the awful look term effects that are the result. Women like to say my care was a " terrible exception ". That terrible things like this don't happen any more. That if" I had researched more, and found a better team" that such horrible mistakes wouldn't have happened. Isn't that like blaming the victim, to say that, rather than blaming the doctors at the root of the grossly incompetent care? They adulterated my medical records by leaving out every detail of my emerging early signs of severe radiation burns. I went to see them several times about the burns and the open sores. At the end I couldn't sleep for the pain, and had to go on narcotics. I thought they were writing down everything. They knew that my care didn’t meet"standard of care", and I can only guess they didn't write down one word about what was I was going through, lest they give fuel for a lawsuit. I was too horrified and took no photos, so it is my word against theirs. So I loose, can't even sue those motherless spawn of satan. Believe me, I looked into it.
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mac~ This is one of the worst stories of malpractice I've ever heard. I am so sorry.
What comes next?
May healing happen for us all.
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I feel a little better KB870 knowing that this thread spurred you to demand safer, more competent care.
Thanks for the kind and caring words Gardengypsy. It shouldn't be this hard, it just shouldn't. I trusted those people.
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As a matter of fact, macb04, I've been meaning to "pay my debt" to you for some time. Your horrible experience of extreme negligence and malpractice did indeed spur me to pay attention and ask, ask, ask.
I was one of the standard patients who went through radiation therapy with no apparent immediate side effects (long-term SEs are of course always a possibility), but knowing your story encouraged me to keep pictures of the area as I progressed. Thank you, thank you, thank you. But I'm so sorry you had to go through all that.
About legal recourse, I'm sorry that road is closed to you, and I'm adding the following only in case it helps others as well: My sister (pediatrician) has testified as an expert in cases where there were no initial documents but where the damage was evident, and saw the families win. It involves finding experts willing to testify that the permanent damage suffered can only be the result of radiation malpractice, a good lawyer, and some luck in the judge you find.
In your shoes, I'm not sure if I'd want to go that route, macb04 - it takes a lot of effort, there're no guarantees, and these experts may be hard to find (basically, they're testifying against their colleagues). So no need to answer; just accept a grateful hug from me.
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Mac:I feel like a lawsuit would be so so hard. It's time for healing!
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I looked into it, but since it was my word against theirs, no lawyers I spoke with (from 2 different practices) were willing to take my case. I know the dishonest, incompetent swine at SCCA won. If there is a hell, I am sure that is where they will be going when their time comes. I deserved kind, safe care. Now I only get my care from Naturopath's that I know. I will never trust the evil medical morons again.
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