Wish I had never,never done rads, DEEP REGRETS
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PamPatty, that's crazy rough to have heart issues requiring surgery on top of a bc diagnosis. I think it's smart to look up the long term results that have been seen with radiation to an artificial heart valve.
Here's some studies you may have seen. I know that rads are known to cause heart damage, so I understand your fear. They ignore the topic of radiation beam scatter which is known to occur. I know that my heart was damaged to some degree, even doing that "breath hold technique". The below study is doing valve replacement surgery after rads, which would be opposite of your situation. Would rads affect your valve replacement? I have no idea, and wonder if doctors can be counted on to be honest about the real long term risks.
So far I have only seen complete and full disclosure of side effects rarely. This thread is full of other women, besides me, who also haven't been given the complete truth. If even one woman is told a line of BS, it's one woman too many.
Good luck with making the best decision for yourself.
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Long-Term Outcomes of Patients With Mediastinal Radiation-Associated Severe Aortic Stenosis and Subsequent Surgical Aortic Valve Replacement: A Matched Cohort Study.
Donnellan E1, Masri A1, Johnston DR1, Pettersson GB1, Rodriguez LL1, Popovic ZB1, Roselli EE1, Smedira NG1, Svensson LG1, Griffin BP1, Desai MY2.
Author information
- 1
- Centers for Radiation Heart Disease and Heart Valve Disease, Heart and Vascular Institute, Cleveland Clinic, Cleveland, OH.replacement
- 2
- Centers for Radiation Heart Disease and Heart Valve Disease, Heart and Vascular Institute, Cleveland Clinic, Cleveland, OH desaim2@ccf.org.
Abstract
BACKGROUND:
Cardiac disease after mediastinal radiotherapy for thoracic malignancy (chest radiotherapy [XRT]) often manifests as progressive aortic stenosis. In patients with XRT-induced severe aortic stenosis undergoing surgical aortic valve replacement (SAVR), we sought to: (1) study long-term survival and compare these patients with a matched cohort undergoing SAVR during the same time frame; and (2) identify potential predictors of long-term mortality.
METHODS AND RESULTS:
We studied patients with symptomatic severe aortic stenosis undergoing SAVR at our institution, of which there were 172 mediastinal XRT patients (63±13 years, 62% women) matched in a 1:1 fashion (based on age, sex, time of surgery, and aortic valve area) with 172 non-XRT patients (comparison group). Baseline clinical and postoperative data were obtained. Society of Thoracic Surgeons score was calculated and mortality was recorded. In the XRT group, the median Society of Thoracic Surgeons score was 4% (interquartile range 2-13), while mean left ventricular ejection fraction, left ventricular stroke volume index, and mean aortic valve gradient were 54±11%, 38±14 mL/m2, and 39±11 mm Hg, respectively. In the entire cohort, 27% and 34% of patients underwent concomitant coronary artery bypass grafting and aortic surgery at the time of SAVR, respectively. Thirty-day/in-hospital deaths occurred in 4 (2%) patients in the XRT group and 0 patients in the comparison group. At 6±3 years of follow-up, on matched group analysis, there were 95 (28%) deaths (83 [48%] in the XRT group versus 12 [7%] in the comparison group (log-rank 89, P<0.001). On multivariable Cox survival analysis, in the whole cohort, higher Society of Thoracic Surgeons score (hazard ratio, 1.14; 95% CI, 1.03-1.26) and mediastinal XRT (hazard ratio, 8.12; 95% CI, 4.26-15.64) were associated with increased longer-term mortality (both P<0.01).
CONCLUSIONS:
In patients with severe aortic stenosis undergoing SAVR, patients with prior mediastinal XRT have significantly worse longer-term survival versus a matched cohort.
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Rate of Progression of Aortic Stenosis and its Impact on Outcomes in Patients With Radiation-Associated Cardiac Disease: A Matched Cohort Study.
Donnellan E1, Griffin BP1, Johnston DR2, Popovic ZB1, Alashi A1, Kapadia SR1, Tuzcu EM1, Krishnaswamy A1, Mick S2, Svensson LG2, Desai MY3.
Author information
- 1
- Department of Cardiovascular Medicine, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio.
- 2
- Department of Cardiac Surgery, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio.
- 3
- Department of Cardiovascular Medicine, Heart and Vascular Institute, Cleveland Clinic, Cleveland, Ohio. Electronic address: desaim2@ccf.org.
Abstract
OBJECTIVES:
The aim of this study was to study differences in progression of aortic stenosis (AS) in patients with mediastinal radiotherapy (XRT)-associated moderate AS versus a matched cohort during the same time frame, and to ascertain need for aortic valve replacement (AVR) and longer-term survival.
BACKGROUND:
Rate of progression of XRT-associated moderate AS and its impact on outcomes is not well-described.
METHODS:
We included 81 patients (age 61 ± 13 years; 57% female) with at least XRT-associated moderate AS (aortic valve area [AVA] 1.05 ± 0.3 cm2; mean gradient 24 ± 10 mm Hg) who had ≥2 transthoracic echocardiograms (TTEs) 1 year apart and matched them in a 1:2 fashion on the basis of age, sex, and AVA with those without prior XRT. Serial aortic valve gradients and AVA were recorded. AVR and longer-term all-cause mortality during follow-up were recorded.
RESULTS:
A total of 100% of patients had 1, a total of 71% had 2, and 39% had 3 follow-up TTEs. Before AVR, mean AVG and AVA were not significantly different between XRT and comparison groups. At 3.6 ± 2.0 years from baseline TTE, 146 (60%) underwent AVR (16% transcatheter), with significantly more patients in the XRT group undergoing AVR (80% vs. 50%; p < 0.01), at a much shorter time (2.9 ± 1.6 years vs. 4.1 ± 2.4 years; p < 0.01). At 6.6 ± 4.0 years from the initial TTE, 49 (20%) patients died, with a significantly higher mortality in the XRT group (40% vs. 11%; p < 0.01), with prior XRT associated with increased longer-term mortality, whereas AVR was associated with improved longer-term survival.
CONCLUSIONS:
In patients with moderate AS, those with prior XRT have a similar rate of progression of AS versus a comparison group. A higher proportion of patients in the XRT group were referred for AVR at a shorter time from baseline TTE. Despite that, the XRT patients had significantly higher longer-term mortality, and prior exposure to XRT was associated with significantly increased longer-term mortality.
Copyright © 2018 American College of Cardiology Foundation. Published by Elsevier
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You poor dear! That is malpractice for sure! The burns would have been obvious and they ignored them. The money for the treatment was more important then the patient. The medical community see us like a production line, they do this everyday all day long. We don't. Most women I have spoken with say just do it, I want to live. I too had burns and itching like crazy but nothing as severe as yours. I finally went to the head nurse after reading online someone else did the same thing and told her I was stopping treatment, since the doctor would not listen to me. Then he said he got it!
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Thanks for the research. I had the valve replacement surgery last week-not open heart but thru my groin so it was less invasive (a TAVR). These articles address aortic stenosis after radiation. I have yet to find anything of the affect of radiation on a newly placed bovine replacement valve which is enclosed in a chromium cobalt cage. It's great technology and less invasive than the traditional open heart surgery done most of the time.
I will return to my RO tomorrow to get into it with him but right now I'm at the point of not wanting any radiation. My other question was why is there only a window of a few months where they do the radiation. I would like to wait until February but was told that was too long to wait.
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Hey PamPatty-
Hopefuly you will get some good answers
tomorrow- Just so you know , radiation
can in fact be started up to 3 months
post surgery
good luck
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I am so sorry to hear that you had to go through this
How are you feeling now?
What was your original diagnosis ? Are you also on tamoxifen? How arenyou feeling with that?
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Kossmore. I wish I could sue. The burning straight through to my back was awful. Having the doctors act like the bleeding sores all over my chest were nothing was appalling. I never thought anyone could be so heartless and uncaring as chrisine fang at scca.
She could have spared me some of the pain just by telling me about the Miaderm cream, who knows it might have prevented some of the open wounds from being so big? She told me about the MIADERM CREAM TO PREVENT BURNS , WEEKS AFTER I WAS BURNT TO A F*CKINF CRISP !!!
Found out from the manufacturer that the cream had been available, on the US market for 5 F*CKING YEARS!!!!!
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PamPatty - the longer you wait the less effective radiation is. That being said, when I was going through it, I met a lot of women who had delays and they were still completing radiation. One woman had completed chemo a YEAR before her surgery and radiation, something about not being able to get time off work, which seemed odd since that is a law here and she worked for the federal government. Others delayed for additional surgeries, to quit smoking, due to wound healing issues, etc. But anyway, could you safely skip radiation if you have mastectomy, and is that something you're willing to consider? I believe the stats for early stage women who have lumpectomy and skip radiation, even with large clear margins, is that something like 30% will get a local recurrence in the next 5 years. And another number I've heard is that about 25% of local recurrences result in mets.
I often wish I had skipped rads, but I'm young with no other comorbidities, so the cancer is really the only thing for me to worry about. Even that being the case, I'm not sure I made the right decision to go through with rads.
You've gotten some good advice about what to ask your RO, but you also need to talk with your cardiologist and probably your MO and maybe your PCP about which of these conditions is the most likely/would be the fastest to kill you. If your heart condition is severe and not very treatable, maybe the high risk of local recurrence is not important compared to the further damage that radiation would do to your heart. You need someone looking at the whole picture, and if your RO and cardiologist can't get on the same page then consider transferring to a larger teaching hospital (or a different one, if you're already treating at one) where the doctors will talk to each other.
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PamPatty, just make sure you know your own mind, because the effects are forever and insidious. I curse the day I met christine fang at scca.
And the doctors don't live with the awful problems from rads damage, so it's easy for them to argue in favor of it, even when there is almost no or zero research saying it's safe.
Like my elderly male neighbor (late 70's who had breast cancer lump removed) and I told him there was zero research saying he would benefit from tamoxifen. The onco md put him on it, and voila! BLOOD CLOTS!
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hapa--just curious why you say "the longer you wait the less effective radiation is?" Are there studies that show that? I'm just curious as my radiation oncologist told me that you can have radiation up to a full year out from the surgery with same results. Although she was talking about my particular cancer type. . . I'm sure some things that might be more aggressive or fast growing with a high Ki-67 rate could be different.
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You all get that this is a Deep Regrets I was fried thread, right?
I think if you want to discuss the pros of frying someone with rads there are lots of other Ra Ra threads that applaud how lucky we all are to have the option of being burnt.
This is not that kind of thread. It is rubbing salt in my many wounds going on and on here about scheduling any rads.
Please respect that.
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Sorry macb04 if I offended you. I do understand the thread. . .I just was trying to clarify what I felt was an erroneous treatment statement about "the longer you wait the less effective it is". Believe me I am not in favor of radiation. I think it does incredible damage and don't feel confident in the positive impact outweighing the negative--especially when you read studies that it can alter cancers to make it more resistant/resilient and cause secondary cancers etc., etc . I feel that much of medicine on this breast cancer journey has been fraught with lack of knowledge by medical professionals that has been abhorrent on my own journey. And what happened to you is just plain malpractice.
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macb04, I am sorry this happened to you. Can you put in your diagnosis? MIADERM CREAM is an option, but I did my own research and used another cream. What were you using 2-3 x a day and at bedtime? One person receiving radiation before me had burns and they delayed her treatment for a couple of weeks. She was given Silvadene cream, but you can't use it if you are allergic to sulfa. After my boost about a week or so later I had the start of blisters under my arm. Which they told me might happen. They resolved with treatment. The tightness and swelling have just started to resolve. Good luck to you in the new year.
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Mysticalcity. Thanks for the understanding. Sometimes people have come on to this thread to make it seem as if this horrible rad "treatment " only rarely causes adverse consequences. It drives me crazy when someone does that.
Flashlight, no diagnosis would ever justify frying me straight through to my back, making me nearly choke on my own saliva for an entire weekend due to swelling of my throat, and then saying to me, " we didn't think it would happen yet"
YET??? So, in other words they full expected to fry my neck so severely that I was supposed to have trouble breathing and swallowing, AND THEY FORGOT TO MENTION THAT LITTLE DETAIL????? Should they have said OOPS when they managed to get their head out of their butts and see the light of day, there in chrisine fang' s rad central at scca?
Also christine fang, idiot that she was, told me about Miaderm a week after the open and bleeding sores had already started. Miaderm says not to be used on open wounds.
I am sure you get the irony of recommending a cream to prevent burns AFTER I was burnt to a frigging crisp.
Good luck to you flashlight and hope you recover from the damages associated with this awful, barbaric excuse for "treatment " as I still have not one thing good to say about it and am unable to pretend otherwise.
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macb04, I only asked about your diagnosis because it might help someone else ask the right questions. I met with my RO every week and my skin was checked and I was asked questions on how I was feeling. I wonder why you didn't seek your BS and or MO when you didn't feel you were getting the right medical advice. What did you do for your skin? Maybe that would help someone else. I read everything I could about the side effects of cancer radiation before I had treatment in order to make my decision. Still there were unknowns that I have learned about on this site. One of the reasons I accepted this treatment is because my daughter said she still needed me and wanted me to survive. That is why many of us go through this treatment. Treatments have improved since 2014 depending on where you live. You are understandably angry and I know you used this site to vent, but be careful making derogatory comments about your health care team by giving out their names.
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Dr. Fang earned her medical degree at the University of Utah School of Medicine and completed her residency in radiation oncology at the University of Washington. She then went on to complete her fellowship in proton therapy at MD Anderson Cancer Center.
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I tried to talk about the awful care, and was told they didn't wany to hear it. My onco, hannah linden said, in front of her nurse and my friend, and I quote, " If your cancer comes back they will cut off your arm"
I reported that very statement by hannah linden to the Patient Relations Dept, who sent me a Form Letter stating " They were sorry I wasn't happy with her care."
So they didn't care what they said or did to me, how they crushed my spirit when I was vulnerable.
So explain to me why my quoting my health care team's actions and statements is derogatory and somehow unacceptable?
Rather I find the actions of my heathcare team unacceptable. Their lack of kindness and compassion was appalling then and now.
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bump
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Hyperthermia is something that is much safer, and has known Anticancer effects. Heat to tumors to tumors and Whole Body Hyperthermia can be reapplied, unlike radiation, which causes cumulative damages that are permanently debilitating.
Hyperthermia and immunotherapy: clinical opportunities.
Author information
International Journal of Hyperthermia : the Official Journal of European Society for Hyperthermic Oncology, North American Hyperthermia Group, 31 Oct 2019, 36(sup1):4-9
DOI: 10.1080/02656736.2019.1653499 PMID: 31795827Share this article Share with emailShare with twitterShare with linkedinShare with facebook
Abstract
Hyperthermia holds great promise to advance immunotherapy in the treatment of cancer. Multiple trials have demonstrated benefit with the addition of hyperthermia to radiation or chemotherapy in the treatment of wide-ranging malignancies. Similarly, pre-clinical studies have demonstrated the ability of hyperthermia to enhance each of the 8 steps in the cancer-immunotherapy cycle including stimulation of tumor-specific immunity. While there has been an extensive recent focus on augmenting immunotherapy with radiation, surprisingly to date, there have been no clinical trials assessing the combination of hyperthermia with immunotherapy. The study of hyperthermia with immunotherapy is particularly compelling when considered in the context of a new treatment paradigm for this anti-neoplastic modality. Novel concepts include ease of treatment including elicitation of the tumor-specific response of not requiring whole tumor heating, potentially shorter treatment time, better treatment tolerance as opposed to other multi-agent approaches to immunotherapy and the ability to apply heat repeatedly with immunotherapies, unlike ionizing radiation. Several questions remained with regard to clinical integration which can be readily addressed with thoughtful clinical trial design building upon lessons learned at the bench and from clinical trials combining radiation and immunotherapy. Examples of promising avenues for clinical investigation of hyperthermia and immunotherapy including melanoma, bladder, and head and neck cancers are reviewed. In summary, there is a present convergence of factors in oncology that compel further investigation of the integration of hyperthermia with immunotherapy for the benefit of cancer patients.
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Similar albeit 180 degrees opposite temperature wise. . cryoablation also holds great promise:
Cryosurgery in the treatment of women with breast cancer—a review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4115762/
although some doctors still recommend radiation after cryosurgery. . . but not all is my understanding.
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Thanks for the info on Cryoablation, Mysticalcity. Anything has GOT to be better than being burnt straight through to your back as happened to me.
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Pampatty I was told you can wait up to 12 weeks before you start radiation.
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Red-I went ahead and had 19 days of radiation that ended Jan 15th. I missed the birth of my grand baby but was on the plane the day after I completed the treatment. Somehow I haven't seen a Medical Oncologist and scheduled to see him tomorrow so I may be doing things backward. Still run out of gas around 3pm everyday.
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Pampatty ---- I have no idea what your age is --- but, if by chance you are 70 or older the new research indicates that if you have early stage (and you certainly do) cancer you often can skip radiation after lumpectomy. My radiation was hypofractionated (3 weeks) and I had no real skin issues. My radiation ended last June and I just learned that I have mild fibrosis in a section of my breast ---- wondered what that hard thing was (-: However, it doesn't hurt. As far as your heart goes they can do a pretty good job at avoiding the heart these days. I would definitely want a long consult with the radiologist first. Good luck
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Dearest
There is recovery from this horrible burn. It is called hyperbaric oxygen therapy and I had it for radiation damage from one radiation treatment to my brain. Later I developed like eight years later after having just three radiation treatments to my breast chest and neck and back developed late radiation damage. I have eczema and psoriasis and it worsened the condition so bad that you can’t even imagine the pain. I think you can. Why didn’t you quit earlier when it was Obvious that you weren’t a good candidate for this ?
So while radiation can help remove stray sells it really does it do a lot of damage to some people I feel for you please check with a good infectious disease person or your oncologist and asked to have hyperbaric oxygen therapy for one month it should remove the fibrosis and restore circulation to your skin. Also try to get a hold of some coconut oil and a few drops to a whole jar of tea tree oil and peppermint oil that’s what I used to relieve the constant itching
Let me know if you’re able to get hbo therapy it’s supposed to restore your skin ! hopr this helps you may email me for more on this idea !
Wishing you healing .Marcia
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just venting...Family Dr has dx me as having radiation fibrosis and has suggested another cortisone shot followed by intense pt. I tore my rotator cuff 2 years ago ...I never thought it could be attributed to rads. I’m so afraid of it tearing again...the pain was off the chart. I really had no clue about rad side effects. I was so rushed with the whole process. Just so frustrated as anything more than an hour at the computer with my mouse makes my arm throb.
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JJ-so sorry you have ongoing problems. It is frustrating as so many medical providers don’t do a great job informing patients of all the potential short and long term side effects. You end up having to do a lot of your own research and that feels like an overwhelming task. Hugs and prayers you find some relief.
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hugs. I also regret rads. I now am getting pain and losing use of my left arm from this terrible radiation beast from late side effects.
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April485
I am having partial breast radiation soon. I (so far) haven’t seen anyone else mention anything about it. I would love to hear from at least one other person who has had this.
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Fuck radiation, man. I never should have agreed to it. I don't think my chest will ever feel normal again.
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I regret having radiation. I am completely and permanently ruined. If I could go back in time I would just have a mastectomy and chemo over radiation any day. The pain at times for me is unbearable and it’s permanent. I cry everyday.💔😓
Sincerely Star
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