Wish I had never,never done rads, DEEP REGRETS
Comments
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just adding another issue. I have so much internal scaring from rad that I now have no balance one breast is smaller than the other even though same implants size in each side. The streaching exercises do nothing cuz I was told I just have to many scars and very thick so much if you feel it you think it is another tumor. I complaint about the sharp pain I have when the skin pulls but PS refuses to do a revision surgery to remove the scars. Basically he says I must be greatful it could be way worse. So yes me too I wish I never did 6 weeks of radiation.
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E- Your profile is like mine except I'm IDC. With rads, size of tumour and lymph node involvement is key. I was told if I didn't do rads, being I am high risk with my non-listed #s, I'm sure to become stage IV at some point. Without question with my 7 cm tumour and 1 lymph node involvement I said yes. I've had complications of infection with 1 time springing a leak at the suture line on the rad side. Unfortunately there are all kinds of possible se's for everything in this process. Chemo's left me still feeling like I'm 80 and not 52, spacey, memory issues and aches and pains. That was a must for me to do regardless. Some did better than me, some worse. We just don't know, and also the team. There are great centers and not so greats centers just like docs. Like our cancer, it's a crap shoot of how we will respond (or not) to what we are given. Another example: Tamoxifen is very kind to me. AIs weren't at all. Some people have the reverse. I wish I could do an AI since I am menopausal and high risk but it left me feeling so debilitated 24/7. Gave it 5 weeks and quit. So we all need to make informed decisions with our personal profile and not read some bad experiences and let fear get in the way of what may help you. Vice versa too. You read people who have sailed through rads and think so will I, then you don't. So so individual.
Sorry to hear you ps is of no help. Maybe find a new one? Don't know how it is in Canada but in the US revisions are covered by insurance. The ps just needs to code it right so it doesn't look like it's all cosmetic. I'm on the schedule for 9/1 to get my right one fixed to match my small and higher up left side.
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I hated that I listened to the rad doctors. So does Enerva and many other women. We are entitled to feeling abused and angry at this horrific excuse for a reasonable and sensible medical procedure. Almost 50 thousand women per year still die despite being abused by the profit making cancer industry. The actual numbers who die each year could be even higher. For instance, if you develop sepsis following a cancer surgery, then they put down you died from sepsis, not cancer. Or if you have heart disease from having your heart irradiated, suffer a premature cardiac arrest, then they put down you died from an MI. You can see how they manipulate the numbers to make it seem like they are more sucessfull now than 20 years ago, when in reality there is so little progress it's laughable.
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update: Reminder that my radiation ended May 19th almost 4 months ago. I have been in various degrees of pain since June 1st. (3 months). Some was excruciating when the incision was open and weepy, other pain is just extreme soreness. Can't wear a bra more than 2 hours without pain meds. The Infectious Disease NP said looks like no more cellulitis (if there ever was) but still swollen, hot, red and sore. Recently came off antibiotics after 20 days. Very, very slowly seeing a little improvement. Started taking multi vitamins with immune vitamins, turmeric (curcumin), vitamin C, vitamin D3 and B-12. Not as red, not as swollen, not as hot but still very sore. Still on pain medication but only to sleep. At scar skin is very dark and "ripply" They did a mammo (that was horrible) and it was "negative" They were looking for cysts or abscess. So basically the NP said that I could have it 3 more months and there is nothing more they can do. I have also been massaging the breast and found some YouTube videos by LMT for lymph drainage. If I had know that this nightmare was possible I would have insisted on mastectomy. (I am 69 yrs old). Please do your own research on possible side effects for certain groups. (obesity, diabetes, immune disorders, anemia, etc). I would not have had the lumpectomy and radiation. I still am not on the Anastrozole that the oncologist prescribed because I feel so bad. I have had side effects from many drugs in the past. I will give it a try but from what I've read on this forum about the side effects and my history I'm not looking forward to it. Each person has to make difficult decisions. I would never tell anyone not to get radiation but I also believe that you should have enough information to make a decision. One last comment: my radiologist said he "never sees this" and kept asking me what did I do! He had no idea how to deal with radiation dermatitis other than treat it when it was an open wound. Once that closed up, he just kept scratching his head and saying he had never seen it. I finally said "well you're seeing it now --- write a paper and be famous" !! (I had had it by then!!) I also want to say that my overall care at the center was excellent. Just that one doctor didn't have a clue. Thoughts and Prayers for everyone fighting this terrible disease. Through all of this I have tried to remain positive. Some days are more difficult than others.
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Sdianel, Doing massage yourself does not help near as much as a certified lymphedemist @ physical therapy. Find the best one in town. Your doctor can prescribe physical therapy. You also need a compression bra and a jovipak to help push the fluid out of your breast. Wear it as much as your can. Jovipak is expensive but worth it. For the redness I found suntan lotion with avobenzene as the first ingredient works. I had the same thing. Ended March 31, 2016, trouble started May 15, 2016. It's an ongoing problem but not too bad. Still have a little numbness in my arm, same side from the surgery. I truly believe that my problem was caused by radiation - 35 visits - before I was completely healed from three breast surgeries. So much for my experts. I wish I hadn't done radiation bottom line.
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I just finished my 16 regular radiation sessions and will begin 6 boosts next Tuesday, and then i'm finished. It has been quite a journey. After I was diagnosed, my lumpectomy was delayed because I wound up in the hospital with a bowel obstruction, that was fun. I had developed a mild cellulitis after surgery which I did 2 rounds each of 10 days of antibiotics for. My breasts still remained slightly red. My radiation was delayed about a month because parts of my incisions had opened and became infected. But, finally started radiation. My left breast (which was the cancer side) became more red immediately starting radiation. I don't think it was actually the radiation, but more of an obvious sensitivity of my skin since surgery being aggravated by the radiation. I did my routine multiple times a day, using green tea, aquafor, aloe vera, calendula gel. I didn't wear a bra the entire time, and still don't, to not add additional stress to the skin (too bad if no one likes it, I'm happy to be a walking braless scandal). I started arimidex about 2 months before radiation, after 2 months couldn't handle the joint pain any longer, switched 2 weeks ago to aromasen, and pain is much less and so far manageable. I have a small blister on the incision on my nipple and very red, almost purple and sore in the area, started using silvadene a few days ago and it helps quite a bit. My left arm is numb and tingly, since surgery, from the shoulder to the elbow, have difficulty moving my arm at times and can't lift it up....I get electric shocks from nerve damage in my breasts, my left side feels as though I was kicked by a horse, I have scar tissue in both breasts from surgery. I am thrilled that I only have my boosts left to go...woo hoo !!! Last leg of the journey. When I heal from the rads for a few weeks, I have to go in for lung surgery because I have a node on my lung that was discovered before I started radiation treatment. I hate that some people go through much pain, it breaks my heart. What I know for myself is that i'm grateful i'm 50 years old. I had many many abdominal surgeries from an ovarian cancer in my 20's which the scar tissue resulted in many bowel resections and bowel obstructions over the years. But i'm 50. I hate that I just had breast cancer, but i'm almost done. I hate that I have to go for a lung surgery after this, but oh well, I will go. I am grateful I am 50, I am grateful I am alive, cancer is an ugly disease that many forms do not have a cure.....dr's can only do and give us what they have, none of it is a guarantee, its a hope to stop the disease, eliminate the disease, slow the disease....so we can go on longer and experience life. I am grateful that I have a wonderful husband and a beautiful life. When i'm finished with my boosts and my lung surgery, I will pick up my side effects and whatever pain I have left and I will continue with my life to every level I can and I will enjoy it in every way I can while I walk this earth....that is all I can do and I will enjoy every moment of it with my husband while I am alive. Sadly there are many who have lost the fight. Sometimes cancer and cancer treatments is an ugly, difficult, painful road that is travelled, but why do we travel it....to give us a chance to continue on in this wonderful thing called life a little bit longer. If we don't try, what is the alternative?
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enerva, if you don't want to have an implant switched out with a different size to achieve symmetry, you might be a candidate for fat grafting, surgery which involves removing a small amount of fat from the leg or belly and injecting it into the breast that needs it.
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sdianel, you can possibly get improved healing by Hyperbaric Oxygen Therapy (HBOT). I got HBOT at the Wound Care Clinic near my house, that was associated with the University of Washington. It is paid for by Medicare, under the diagnosis of Soft Tissues Radionecrosis. It helped significantly with healing from the severe rads damage they carelessly inflicted on me at Seattle Cancer Care Alliance (scca).
Systematic review of hyperbaric oxygen therapy for the treatment of non-neurological soft tissue radiation-related injuries.
https://www.ncbi.nlm.nih.gov/pubmed/24794980
Outcomes of Radiation Injuries Using Hyperbaric Oxygen Therapy: An Observational Cohort Study.
https://www.ncbi.nlm.nih.gov/pubmed/26650092
The efficacy of hyperbaric oxygen therapy in the treatment of radiation-induced late side effects.
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I have declined radiation. They gave been hounding me, but I just know it will be horrid. I had melanoma and am supposed to avoid sun exposure. Seems like radiation would be more harm than good.
Thanks for sharing. I feel better about my decision.
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Smart lady! I call it microwave - cooking from the inside out..
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It isn't easy to stand up to these doctors. I did and they made me feel reckless but when you have such strong feelings about a certain treatment, don't do it. In my case, it was chemotherapy not radiation. I can't believe they wanted me to risk my overall health for a recurrence risk statistic that was unimpressive at best.
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Meow13 I was not even given a statistic! I just said NO. Glad you'rehere btw
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I had kids and was guilted into doing the frying and poisoning. I felt really wrong to do it, felt so upset that I let myself be bullied into it. It worked out terribly, causing me awful side effects. Even the last 2 chemo's made me severely ill, gave me a sudden very high fever (105.?) just hours after the poison. The fever lasted hours. I was home alone when it hit both times, and was in so much pain that I was crawling around on the floor. After that happened the second time I wouldn't get anymore, stopped the whole thing and refused to get more. My body just rejected what they were doing to me. You have to do what seems right to you, not what you get talked into, or as in my case, bullied into. Then there are less regrets when things go poorly.
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Shari-Ann,
Due to my melanoma history I was told I was NOT a candidate for radiation and went for the Mastectomies instead so I could avoid it.
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Cancer Research Institute - CRI is currently funding postdoctoral fellow Monica M. Olcina, Ph.D., at Stanford University who is researching radiation therapy toxicity and immune response (including esophageal cancer), and CLIP Investigators Nicholas David Huntington, Ph.D. and Sandra Nicholson, Ph.D., of the Walter and Eliza Hall Institute of Medical Research, who are researching NK cell proteins, which act much like PD-1 and CTLA-4 block T cell activity.
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First week of July I finished my 20 doses of radiation, last 4 being a boost. One month later my side started hurting. I mentioned it to Radiation Oncologist at appt end of August. He said likely from radiation. Well now it is much worse. It feels like someone drop kicked my side, where your bra would go. I broke down Friday and made an appt to see my Medical Oncologist next week.
Does this sound normal? I am worried it could be more
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We are all different. None of us can say if anything is 'ok' much less 'normal.' Few come away from rads without something. When I finished rads in June of 2016, I looked like a lobster in those areas with some on and off pain. I applied creams and a year later it finally got to closer to normal skin color. Took a long time for it all to resolve. So check with your doctors.
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I don't know if this helps you Mumzy, but during my radiation treatment, very early in, I felt like someone had slugged me in the chest as hard as they could. The ribs between and under my breast just KILLED me! It hurt to roll over in bed. It hurt to breathe.
I told this to the radiation girls who sort of nodded and said that's normal, advised me to take ibuprofen or acetaminophen.
I hope it's just a delayed reaction and nothing else.
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I had pain in my ribs for a very long time. It's a year and a half later and I just noticed today it's gone
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I am so sorry some women had horrible experiences and deforming results.
I am feeling very fortunate. I had 5 weeks of radiation and no boosts. I ended up with a very faint tanned area. I only used lots of aquafor and had absolutely no issues. I was very worried starting out because I sunburn very easily. My R O checked on me every Monday and we were both very pleased. I still see her annually and am now almost 4 years out and my tanned area has faded to blend in with my original skin tone. I do notice my skin is tighter in the radiated area.
I pray many many others have a favorable response.
.
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Hi Mumzy, I hope it starts feeling much better for you soon. I have heard other women who got terrible pain and tightness from the damage they were given with rads. I think it goes away for many, but it is a crap shoot over who recovers.
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Have you thought about trying hyperbaric oxygen treatment?
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Have you all read about the increased risks of agressive, treatment resistant induced Breast Cancer Stem Cells after they fry you with rads??? They never told me about any of that.Lying sacks of sh*t. We all deserved to know that risk. I would never, never have let them fry me if I had known this. This is totally unacceptable!
Radiation-induced reprograming of breast cancer cells
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3413333/#
The role of radiotherapy-resistant stem cells in breast cancer
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC34133...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3413333/#
Radiation generates cancer stem cells from less aggressive breast cancer cellshttp://newsroom.ucla.edu/releases/radiation-treatments-generate-229002
Induction of metastasis, cancer stem cell phenotype, and oncogenic metabolism in cancer cells by ionizing radiation
- Su Yeon Lee†,
- Eui Kyong Jeong†,
- Min Kyung Ju†,
- Hyun Min Jeon,
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macb- just wanted to thank you for all the info you post. I realize from the boards that a lot of it you had to find for your own treatment and recovery, but I'm sure it's useful to many. Especially the links!
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I am currently doing radiation and asked my RO about a lot yesterday. She basically told me I can expect it to go through to my back by the end because I'm thin. Also that they have "many" patients go on thyroid meds because their thyroid stops working later. And then she added that my lung is also getting the radiation. So while I'm doing well so far, I'm not liking the long term prospects. I asked today for the reduction in risk that I'm gaining from rads. Waiting to hear back
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Thanks Cpeachymom. I am glad to get something positive out of the misery they inflicted on me. They never told me about all the risks, never mentioned I would be burned through to my back. I also didn't know they were targeting my neck and destroying my Thyroid. They had no right to destroy my Thyroid without my consent. I am on Thyroid meds now and have some trouble swallowing since they fried my neck, and I worry about Thyroid ca., since radiation damage is a known risk factor for that.
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Trouble swallowing and ahoarse voice is a symptom of thyroid cancer.
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Reading your experiences brings me tears and fills me with utter dread about the damage radiation therapy has caused so many breast cancer patients. It's not fair and it's just not right! There should be full disclosure prior to undergoing this treatment. I know from personal experience, prior to the lumpectomy that my first breast surgeon made radiation seem like a very minor inconvenience to my day and DID NOT discuss potential risks associated with it. One of the main reasons I opted for a bilateral mastectomy was so that I could avoid radiation. Surely there must be a better way to prevent local recurrence. I looked at old studies and many women at the time, who underwent lumpectomies didn't need radiation therapy and they did well long term--- was this because excisional biopsies were the standard of care at the time? Just curious.
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Probably new studies showed otherwise. The problem with studies is it looks at x # of people at a time, if there is even more than 1 study done on the exact same thing. We are all different. Some did well, some didn't. That's why it's an individual choice and nothing is guaranteed either way you go.
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Radiation Therapy: It Was Supposed To Be Easy * The Underbelly
https://theunderbelly.org/2017/01/radiation-therapy-supposed-easy/
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