Wish I had never,never done rads, DEEP REGRETS

They definitely want to you to just take their word. So glad I didn't do the recommended chemo.

Mac I'm interested in your diagnosis and testing results

hello to all. For what I 've read and the answers I took from docs radiotherapy must be done (to a new and fully equipped center of course) if you have positive nodes. of course you must check with at least 2 docs.

hi all I am 8 years of cancer free and pray every single day to be free for whole life and I regret chemo everyday by they way life gived me very beautiful gift my husband and beautiful 4 month daughter I ma so greatfull to my god he has blessed me but I regret chemo but not rads although it had burned me and Scars are shiny and pink in color has enyone had th

wow, I am so sorry to hear this! I am also going to SCCA...I am scheduled for radiation after my lumpectomy, but will now definitely research this more before I consent. My BF tolerated radiation with absolutely no problem, but everyone's different. Thank you for posting

About blood tests never being wrong, my 16 year old son was having hip surgery and right before starting the procedure the surgeon came out and said my son had a rare blood disease. I said "I don't think so" his regular doctor that had treated him since birth never mentioned it. The surgeon was hestitate but agree to redo the blood test. Guess what, he didn't have the rare blood condition. I hear this all the time "the labs never have mistakes". I wonder about the oncodx test why are some people getting vastly different results from pathology. Maybe since cancer tumors are usually heterogeneous. I won't bet the bank on one test or even pathology. My biopsy and pathology from mastectomy matched fairly closely, so I feel pretty certain with the diagnosis.

I’m so sorry you continue to be miserable. I understand some of your experience.

I had both breasts removed x2. During the second surgery my surgeon was trying to find clean margins. There were none. He cut away a great deal of skin and tissue, enough that my wounds were difficult to close and so a wonderful plastic surgeon was there to close. She pulled my chest muscles down towards my stomach as much as possible, then sewed the muscle down to abdominal muscle with a mesh. My small amount of remain skin was shaved as thin as possible to remove as much cancer as possible. In the end she still had difficulty closing my chest. All worked out well. They both did an incredible job.

Clearly there was little tissue between skin and bone. Really, none. I can feel all the ribs on my chest and sometimes I think it will all fall apart. Especially after rads.

I required full chest rads from my collar bone to lower ribs, as well as axillary irradiation. I had some open wounds in my axilla, however the wounds were not the major problem. I kept feeling sicker and sicker as treatment went on. It felt worse than when on chemo.

• I began having severe sternal pain and my heart was acting crazy. The sternal pain became so severe, It prevented me from inhaling properly and my oxygen saturation decreased to a dangerous level. I was hospitalized. I was found to also have a burned spot on my heart, which explained the irregular and erratic things my heart was doing. I refused to take the last two treatment and wanted to stop at four treatments before completion, but I felt I should continue despite feeling miserable because my cancer was so widespread.

Eventually I recovered. My radiologist told me “I’m sorry, I went too deep”. One of her nurses told me “ this is your new normal”. I don’t advocate violence of any kind and have never hit another person nor want to, but in that moment I wanted to punch her in the nose.

I was really never a candidate for reconstruction except as a possible A cup, because I have very little and tight chest skin even 8 years on. After rads there was no chance. My skin is severely damaged. It remains hyperpigmented and is covered with weird spots and discolorations. I wear a soft bra and even with that I can’t wait to take it off as it feels like it’s made of metal. I must constantly stretch several times a day as my chest wants to contract. The axillary rads produced about the same, I must constantly stretch or lose my ability to lift my arms over my head.

I advocate for women and men with breast cancer to get the treatment they need, including rads. For all other treatment I drive 100 miles to a well respected cancer institute. For rads I chose to have treatment at my small town cancer center. That was the mistake. I do not believe I would have had the same outcome at the institute.

Lesson: choose your providers carefully. Receive treatment of any kind at the best cancer treatmentprovider you can get to.

sherrmue,

What a story, I was both frightened and saddened as I read your post, knowing how everything was so very hard. I wish that had never happened to you. You are a woman of tremendous courage to endure all of this and still reach out to share and educate others. I wish you nothing but the best going forward

Thank you for keeping this bumped. I would probably have missed it otherwise. I am meeting my radiation oncologist and medical oncologist for the first time next Friday and I have a lot of questions now that I might not have had before.

I am keeping a document of my research here in case anyone wants to see.

Where I have pullouts, it's usually applicable to my scenario (stage 1 ER+) but often the articles have info for others too.

It's still in progress. I set it so anyone with the link can comment/suggest - so please do if you have things to add or thoughts!

This is my summed up version so far, that I posted elsewhere on the boards:

As far as long term outcomes like overall survival and distant recurrence/metastasis, radiation does not make a big impact for early stage breast cancer. They had to meta analyze hundreds of studies before they could make a claim that it actually has a statistical significance at all because in each individual study, the benefit was too small to be considered significant. That said, overall they say that there is an 87% chance that radiation will have a positive impact on long term outcomes for early breast cancer, and they think that for every 4-6 local reoccurrences prevented, 1 breast cancer related death is prevented. And radiation has proven very good at preventing local recurrences. On top of the (limited but likely real) long term mortality benefit of radiation, reducing local recurrence can save a while lot of stress, time, and money, for patients. This is all weighed against the short and long term risks of radiation. We still don't have a good grasp of the long term risks because of how long it takes to know and techniques have improved so much in the last 25 years.

This is all based on my own reading of studies, and I am not a doctor or scientist, just a patient with a way too long wait between diagnosis and meeting my radiation oncologist (Friday will be the day!) and too much impatience not to at least try to look for answers in the mean time.

From what I can see, studies so far show that whole breast radiation is better at reducing local recurrences and better in terms of cosmetic outcomes. There isn't evidence yet for whether it has lower long term risks. I am leaning towards whole breast radiation.

On the other hand, I am very keen to ask my doctor about minimal acceptable dose and fractionated treatment to shorten it as much as possible. I also have lots of other questions in terms of how it actually works and lifetime limits on radiation.