Wish I had never,never done rads, DEEP REGRETS
Comments
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I finished rads a week ago. It wasn't bad at all. I have very thin skin so I was reluctant to do radiation, but it was fine. The last few days of radiation my skin got red and itchy, but Aloe and a dusting of Cornstarch relieved all discomfort. BTW, I'm 71 years old. It's normal to be apprehensive about various cancer treatments. Feel the fear and do it anyway! I was also reluctant to do chemo, but even that wasn't so bad thanks to steroids and anti nausea meds. The worst part was losing my hair, but that's temporary. YOU CAN DO THIS ;-)
Meg101
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Glad you did well, Meg101!
We all have our unique, individual differences and vulnerabilities. If my BC is back and I am told I must do radiation or die , I will just have to figure out a way to give it a go. Hoping I never have to make that risk benefit calculus
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I’m in Missouri, I had a lumpectomy October for stage 1, they did 5 weeks of rads to lower my risk of recurrence, 31/2 weeks into it I started burning, bleeding, oozing from my cleavage to my armpit, it burnt all the nerves, I had to sleep setting up for 9 nights, the only way I could tolerate the pain was to keep silvadine globed on with a cotton baby diaper on it. During this time the phrase “moist desquamation “ was never mentioned, I found out thru internet searches! During rads they acted like it was routine, no empathy at all, they just got on to me about the cream and diaper, they insisted I had to let “air get to it”! I’m 57, natural 38ddd, I would had to have stood on my head!!!!
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OMG you guys went through hell with your radiation treatments. I’m like Meg I’m one of the lucky ones. I had very little burning and slight fatigue halfway through 33 treatments.
I can’t even imagine how you guys did it with all that pain and suffering. Frankly I wasn’t told much about the risks either. I did do my homework and was aware of what can/might happen in the years to come like lung scarring. Other than that my RO told me the kind of cream to use.
You gotta wonder how much doctors push these treatments in the name of need or is it more about the money. We know they are in bed with pharmaceutical companies.
Diane
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not all docs are in bed with pharmaceutical companies. Please don't say everyone when most are not.
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I also wondered about the Cancer Society, I had no insurance and the only way they would help is if I took radiation then I would get gas coupons, I’m grateful for the help with gas it was 140mi round trip daily. But I thought it was the Cancer Society not the Radiation Society
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What's a bolus?
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I think there is too much push to do radiation with very little explanation of the side effects you can have. I still really regret letting them destroy me with rads. I have some heart damage/thyroid damage/ lung damage and of course the tightness of my arm that at times just drives me round the bend. I stretch every day, and can just manage to stsy ahead of the wretchef chest tightness and iron bra feeling. I feel deep grief sometimes thinking I will never be able to feel right in my own body ever again.
I explained it to a woman once, that it was like you were wearing a pair of pantyhose that was too small, and all twisted up. Also someone has a gun to your head and said you can never untwist that messed up panyhose, just learn to live with it.
It is like the bc industry owns my body, not me.
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mac, I am so very glad I never had radiation or chemo. I had DIEP reconstruction and it feels a bit more uncomfortable as feeling still coming back over 6 years later. I am still having side effects from AI drugs. The treatment is bad. I pray it gets better in the future.
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BUMP
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Macb04 what a horror story. I am happy to say that I have not had anything like your experience, but I have heard of other people suffering bad burns. I am tempted to say that your radiation center sounds criminally incompetent. It absolutely did not have to be that way. It is unfortunate that the health system in the US is not better controlled and standardised, and that it is "for profit", because it sounds like it is sort of the luck of the draw what kind of quality you are going to get. I had 25 treatments to my left breast and lymph nodes four years ago, (I am in France) at the end there were some places under the arm where the skin cracked and oozed and needed to be dressed with a red liquid and kept dry - that lasted for a couple weeks, but then it healed all up. It was not painful, only inconvenient and messy. I am now three fifths of the way through 5 weeks of rads to my right breast. I am always amazed by the professionalism and really careful care of the radiation technicians in my regional cancer center. I know that is sort of a desperate measure to try to save my life, and could not actually work, but I am profoundly grateful that they are trying. In any case no one is forcing me to do anything, thank goodness. I am the one who is practically begging them to try something, anything. I sure hope that you recover fully from this nightmare and never have to go through this again !
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bump
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I've talked to literally thousands of breast cancer patients over the last 7 years. A few women have had severe difficulties during Rads, but most do not. My personal recommendations before doing rads:
1) Do your research on the Radiologist Oncologists - ask for patients you can speak with about their experience. Talk to nurses in your area.
I did this and it was invaluable to put my mind at ease because I had Rads in my local community rather than my
large university teaching hospital where I had chemo and where my MO was located.
2) Call all the hospitals you are considering and find out the age and type of machines that they have.
Do your research. I found that there was quite an age difference in radiation machines in my City. I made sure I went
to the hospital that had the newest machines. I was shocked how cooperative the hospitals were with giving me information.
3) If you are on the fence about having Rads, go to an NCI Designated Cancer Center for a second opinion.
https://www.cancer.gov/research/nci-role/cancer-ce...
4) If you have left breast cancer, seek a hospital or cancer center that has Breath Hold Radiation to help the radiation
stay away from your heart. This technology was not available to me, but my sister drove 120 miles round trip every day for 7 weeks
for this technology. I was so glad she did!
5) If you make a decision on a hospital, ask if you can speak to a Radiation Technologist. You can tell A LOT by talking to the people who do the work rather than the Radiation Oncologists. I asked many, many questions and by the time I was done, I knew I had made the right decision going to the hospital I chose. By "chance", one of the Radiation Nurses I spoke to was a breast cancer survivor. Her help was invaluable.
Seven years later, I still keep in touch with some of the Radiation Team I had. They helped save my life, and I am grateful to them.
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Just wanted to post that I have read each and every post. I certainly have learned a ton. I value every experience. I am horrified by those left altered by radiation therapy, some permanently damaged.
Healthcare is not equal. Most do not get to pick and choose their team. We have 4 hospitals in my city. The hospital where I had my surgery and where my “team” is, is specifically a breast cancer center based on certification. I did not know this until my P/T person told me that yesterday. My care has been very good.
As I have posted before, I have refused any radiation, chemo, etc. This is my second b/c. I was in my 40s first time. I refused treatment then as well, except for surgery. I am now 66. I do not want to labor over my decision, but wanted to share this observation.
I still to to p/t each week. Since I had lymph node dissection, and a mastectomy, I needed help which my team supported. The p/t has been a huge benefit. I would highly recommend. I am still battling lymph node issues. I must pump a few times a day, plus many exercises to help keep the lymph moving. I still wear a sleeve when in the car, working in my garden, and biking. Riding in the car still bothers me a lot. I use a small pillow tucked up under my armpit for support. I am shocked how many medical staff are unaware that my right arm is compromised for life regarding cuffing during blood pressure, or taking blood. I only found out accidently that my arm would need protection for life. Nobody told me. Yikes.
I go to our cancer center each week. So I am seeing all the cancer patients, many taking chemo and radiation. A woman yesterday, barely moving, extremely frail looking, was extensively burned on her neck down. I was shocked. I felt enormous sadness for her. I could not believe how scorched she was. Really, it rattled me for the entire day. I was so bothered I stopped by a doctor friend, and told her what I saw. We both had a friend, more an acquaintance for me, that died a few years ago with cancer. She told me yesterday that she saw our friend shortly before she died, and was shocked to see her condition due to chemo and radiation. She said she told others to not go see her as her condition was so horrific to see. She said she still gets nightmares over it. This woman is made of steel. It had to have been so bad. I keep thinking how hard it must have been for the husband each and every day. They were a happy couple in our farming community. Quality or quantity? Again, my sincere sadness for all those suffering. -
1redgirl,
I am glad you feel your care has been very good.
So sorry you witnessed that heartbreaking but hopefully quite rare situation. You get your PT weekly at the BC center, and you being such a sensitive soul I wonder if there is a way you could get your PT in a more serene setting, or at least, is there a different route thru the center, that you could take on the way to your PT. Take care.
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Maybe one day the protocol will change? I do feel many are pushed into rads even with good prognosis from their pathology and Onco reports. However, just as it's a personal decision with the surgeries, same with rads. I thankfully ended up being grateful to the people who treated me. It was not without great stress-getting in, mapped, and having them keep said time of appts. put me over the edge. First mapping failed and since I was left side, I asked to be treated in the prone position. Much safer than the breath hold in my opinion, but prone is more work for the machine, more work for the techs, and with so many people being treated I feel that's why it's not offered because it's a matter of efficiency. My sister who also had BC has lymphedema in her right arm, wears a compression sleeve, and this is probably permanent. My breast healed very nicely after being graded as a grade 3 dermatitis. Today, away from the treatment area I still have minor skin issues. Rash on collar bone comes and goes, and it is SO true when they say do not have BP or blood drawn on your treated side arm!!!! Well, they couldn't find a vein in my right arm so I stuck out my left arm and since June have a rash there. These are just annoying to me and I really don't want to be reminded of it, but it pales in comparison to what could have happened. I will keep all my follow ups with the RO, he was a very good Doc as I want my experience documented properly. Sometimes I think rad patients don't go back, which leads to under reporting of long lasting side effects. Hugs to all!!
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I hesitate to offer my experience in 2012 since I feel so blessed for the treatment i received with my initial diagnosis. My radiation oncologist went out of his way to give me every detail of the treatment and side effects. My situation called for 16 rads. The last week I began to redden but not anything compared to those with 30 or 35 treatments. Fast forward to 2018 - metastatic BC to lower back and tiny seeds in both lungs. Excruciating back and hip pain, inability to walk or turn over in bed sent me back to radiation gladly. 3 little pin point tattoos-one on each side of the pelvis and one beside the bellybutton. After one treatment all pain relieved and I could stand and walk -also began to reduce and kill the tumors. It also stopped the immediate permanent loss of bladder and bowel control. I'm all about quality. I'm not one to keep breathing at any cost but the things I can do to yield a better quality as an end result helps me with my immediate decisions. I too am in active treatment with AIs and zometo infusions but my end seems to lie at arms length- at 69 two or three years seems too short. For those with regrets of past treatment don't let it rob of your precious today and quality you desire. For those who choose to receive no treatment- live boldly without regret. For those just now beginning your journey you can always stop treatment if it becomes so burdsome, but you'll never know unless you try. Anything I say is not meant to sway or dissuade . I'm just on your road either ahead, behind or right beside you. Hugs and peace.
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I think if I had really known the high costs associated with being fried to pieces by rads, exceedingly painful bleeding sores to start, radiation fibrosis causing insane levels of chest and arm tightness not even touched by weekly PT. Lets not forget my Heart damage even with the useless breath hold technique. My poor fried L lung has a perpetual slight gurgle associated with some feeling of shortness of breath especially when lying down. They also wreakwd my Thyroid gland without even telling me they were doing that. The level of dishonesty and condescending Hubris was unreal. Shame on Christine Fang at SCCA in Seattle.
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I’ve read them too. I feel so sorry for those who have had horrible experiences. Even though I plan on moving, I would return to my radiologist if I ever have to do this again. It was a good experience including wonderful staff. They also have state-of-the-art equipment which may have made a difference. I’d be happy to recommend. They are close to San Francisco.
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There needs to be accountability. The vast differences in experiences shows you someone is not caring for the patient. It should never get to the severity it did with macb04. Yet it continues and gets brushed under the rug. Not right!
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Thanks Meow13. I do often feel that my experiences are discounted if people haven't personally had a bad experience themselves. Wrong treatment is wrong, period, whether it happens to me or someone else. I try to never discount, or make light of other people's experiences.
1redgirl, I have read, and reread what you wrote about the awful condition of your friend as she died from severe chemo and rads damage. It is frankly chilling to hear of such horrific suffering, so severe it gave your MD friend nightmares. A very similar bad end for my friend Mary, who was only 34.
These things need to be made public, discussed. We can not be paternalistically protected, we need to be fully educated of the reality of side effects. We deserve the right to weigh the Pros and Cons ourselves, not some doctor who goes home from our suffering every evening.
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bump
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Is there a reason for the bump?
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I think what mac went through isn't common place. It's awful she went to a place like that. Bumping the thread scares people. Bottom line is it's not common but everyone needs to research the place. I go by real life referrals of people who have been somewhere, not so much online, for such life changing stuff.
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gg27 -,did you have reconstruction after stage 4 dx?
My rad burns were very painful, skin messy, open and very sore, flamazine cream helped a bit to fight infection. I was sore for months after, and had restricted use on my radiated side, currently undergoing occupational therapy which has helped my mobility greatly! (1 year later
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I bumped the thread to keep the topic going.
I would like to think that what happened to me is rare, but there are numerous women on this thread, and others who experienced terrible, permanent damage from radiation "therapy"
Just look at the last posting by 1redgirl. I just want a space available where real life can be seen and heard, not just swept under the rug.
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I hope this thread keeps getting bumped. (Thanks macb04 for taking the time).
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Wow Joanne. So sorry to hear you got Angiosarcoma from the Radiation. I try not to worry about that kind of thing too much, it could drive you insane.
I do agree completely that we deserve to know the reality, not to have it sugar costed as happened to you and me, and scores of other women.
We need to stand in solidarity, not just be glad bad care and poor outcomes didn't happen to me. An injustice for one is and injustice for all.
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Glad to see an active dialog.
Hi Renata.
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Thanks for the info, dragonsnake. From my discussion with my RO, I've learned that there are vastly varying degrees of accuracy in radiation treatments. My RO uses some sort of high tech computer program to line up the treatments. He also has the only machine in town (I live in a medium-sized city) that can treat women who still have breast tissue (lumpectomy, e.g.) without radiation to the heart. Unfortunately for me, I don't qualify, and my cancer was on the left side.
But I feel better using his computerized system than other systems he told me about. He worked with an RO in another city who eyeballed the images and drew on them with a pencil. Not sure how that worked, but he said she had faith that she was "getting" the tumor, but in his opinion, she was way off.
Macb04, I completely understand the juggernaut of BC treatment. I was almost steamrolled into chemo — they had me set up to get a port before I'd even consented. And, it turns out after I insisted on having surgery first to see if I qualified for the Oncotype DX test that I had a higher chance of recurrence WITH chemo than without, according to the test. Sounds like your RO may not have been using the most accurate system.
I'm not the kind of person who just takes orders, which worked in my favor. But I fully understand how they scare you into treatments that have the potential to cause harm. Best wishes — Taj
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