Wish I had never,never done rads, DEEP REGRETS

Macb04,

SO sorry...

Although my rads tx problem is different from yours in that with mine, there wasn't any initial obvious problem until over a year had passed, the complete lack of honest effort to acknowledge it and try to address the reality of it IS the same. How many of us have serious problems afterward is never dealt with or openly counted for the next patients to know.

I was not treated at SCCA. My rads was done in a northern California valley rads center.

My initial diagnosis was done in Alaska. I share your feelings about the difficulty of dealing "appropriately" with any of this as a patient at the "right time". The surgeon "breast cancer specialist" that I saw in Alaska ignored the first BIRADS level 4 recommendation for biopsy. She ignored a second BIRADS level 4 recommendation for biopsy 3 months later. She failed entirely to schedule a third ultrasound/mammogram at all for me, and I scheduled myself for that. It also returned as a BIRADS 4 recommendation for biopsy. NO ONE WAS MINDING THE STORE. I called the surgeon's office, which is affiliated with the hospital, and they said the surgeon was "on vacation in Europe". As soon as she got back I was biopsied, FINALLY. All of that resulted in 6 months of growth of the cancer. A "hospital-based investigation" was done and hushed up. I wrote a letter to the hospital, asking that the hospital board put in place practices to avoid having this happen to anyone else. That never was presented to the board that I could determine. Instead I was given an interview with an administrator only.

After completing my entire treatments, within the required time-frame, I consulted an attorney and filed. (This of course did not even have anything to do with the completely separate California rads damages.) The system of legal recourse did not work. My original Alaskan "surgeon" eventually left the community. At the time she was authorized by the hospital to treat me, she was on probation in the State of Alaska for dispensing drugs to her significant other, AND she was under review in Arizona for 3 separate cases of questionable practice.

A.A.

Yes. I am so sorry that happened to you. It sure seems like you could get a lawyer...

Macb

Just want to say hi and tell you you are not alone with the whole collateral-damage-from-rads, mess. My friend is still dealing w residual injury to her lungs from radiation after 3 years and her RO absolutely refuses to acknowledge the relationship between the two. She's gotten second and third opinions from The Mayo Clinic in Minnesota who has confirmed radiation pneumonitis. When given a copy of the dx, the RO pretty much threw the papers back at my friend and said well they're wrong!

As I said before, what happened to you should never happen to anyone. I do think yours is such an awful case, however if you don't have photos and documentation of the burns, you probably cannot be successful in persuing a malpractice claim. I hope you continue to heal. I also want to thank you for reporting your situation. I believe you are helping others to question radiation or at least be aware of side-effects as terrible as yours.

Amy

My trust in doctors is limited, I feel that so many don't really listen. I think as far as cancer goes you really can't rely on doctors advice alone. This BCO and the wonderful people have provided so much information for me. I know much more now than from mo's office.

It seems to me that it was more the place/people that dealt with your case than rads itself. While of course there are some who have issues, most seem to not have big issues. Everyone should of course do their research and decide on their own, and that goes for chemo too where there are cases of "hell" as well. Seems imo you should putting the word out more about the team in Seattle that screwed up than about how terrible rads is-- imo.

I certainly don't have a problem sharing bad experience, but from what I'm reading it's the center that screwed it up or the docs making the decision. Sure there are side effects to it but what she had isn't common. Just don't want to scare folks away if it is in their best interest as this is sure not the norm as rads go.

There is no other avenue to provide real-life outcomes for others to take into consideration at time of treatment recommendations. There is no nice agency out there that keeps track for us all, that would result in providing an accurate picture that caregivers would provide to us at the same time they are presenting their recommendations.

This is particularly gruesome and tragic because these are recommendations that are being made to populations that include those who have been classified as "early stage", with a particularly large number of humans who likely get no benefit at all from the treatments.

At 14 years out from early stage bc with stage 1 lumpectomy and SNB, I am dealing with being a freak with two entirely different-sized breasts, with one perky and one sagging. I had near-perfect breasts at time of diagnosis and treatment. I have not had recurrence.

However, as a direct result of treatment for early stage bc I have been genderless ever since completion of treatment. As a direct result of rads, I have radiation necrosis and the breast has hardened to the point that mammograms have become intolerably painful. When I told this to my BS' nurse on the phone, she actually laughed and told me to "just take a pain pill before the mammogram". I took her advice, which proved to be absolutely useless and insensitive. To make matters worse, the only way that the mammographer deals with this situation is to tighten down the paddle onto the painful breast even more because the hardened breast tissue will not compress adequately for getting a clear enough image for the radiologist to see well. I do my best to handle that. The reward I get for doing that is to then be told they need additional views. Their answer to the problem is to then tighten the pressure even further. They have become part of the machine, and the machine is all they know. I am no longer a person to them.

I had my most recent mammogram in 2014 and skipped last year but did a breast MRI. My BS continues to insist that I alternate a mammogram 6 months after annual MRI.

I have been scheduled for a mammogram in early July. They offer no alternative. I am not the one who burned the breast so badly with excess radiation. The net of all of this is to be treated as if I am not cooperative. This stinks.

A.A.

A.A. - You may have to pay for it if insurance doesn't cover it but please check into thermography. Much kinder to someone like those of us with radiation damage. And nowhere near as expensive as a mammo.

Good luck to you.

JJ

I had very little difficulty post-rads (16 partial-breast treatments) except for enlargement of the tumor-bed seroma and fibrosis over it--which have both pretty much resolved. BUT I am a bit shaken that three weeks ago, at a baseline skin-mapping exam my derm noticed a 2 mm “atypical mole” on my back that looked very suspicious for melanoma--irregular border, asymmetrical, tan-and-brown. Took two biopsies (shave and deep-punch with sutures) to get clean margins and determine it was a pre-cancerous dysplastic nevus in situ. My PCP had looked at my back a few weeks post-rads to evaluate a large sebaceous cyst (aka the Headless Zit From Hell) elsewhere on my back and never mentioned a mole (and he notices everything). I mentioned to my derm that I’d never encountered a mole there before, and asked if it was possible that it could be a side effect of rads--the trajectory of the double-strength beams to my tumor bed would have exited my body at that precise spot had I not been lying on a hard table. She said it was theoretically possible, but there’s no research yet to support or disprove it. I don’t think it was something my RO had previously encountered, either. All in all, though, the mole was safely and completely removed, and (hopefully) any remaining tumor cells in my breast were killed. Skipping rads would have been more dangerous, IMHO.

WOW..so I just started yesterday and I asked my Dr about all these so called extreme reactions He actually wanted to make a monetary bet that none of these BAD things will happen. From the first simulation to the pre exray/,first day did not go well. Simulation took an hour and a half. Then after 8 days the supposed day of my first radiation was a horrible experience. I laid on that cold morgue table in a frigid room for 1.5 hr's. I am by nature not a patient person, so I was complaing about the cold, but almost stood up and walked out. After the 1.5 hrs they finally sat me up and said we can not line you up. We will consult the Dr and call you tomorrow.

Yesterday it was about 45 mind. I was dressed in clothes meant for cold weather including a sweatshirt cut down the middle that my mom made for me. It was a lot warmer. I felt nothing and they said your done. After arriving home I began to feel the FATIGUE. I had asked a lot about this Fatigue because I board dogs in my home and can not nap. At 5 pm I was so tired I had to lay down and by 7:30 I was a sleep and slept until 7 am. I am getting very concerned.

I am very afraid of lymphedema and my thyroid.

Am I doing this because the Dr says so.

I need advice

Please respond to me at my email address with any advice.

busgirl406@sbcglobal.net.