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@blondiebabe1

I'm so very sorry that you and your boyfriend are going through this. It seems as though some doctors do not have that human gene in them to remember that their patients are human that they are not doctors that they are not knowledgeable of everything going on. The doctors should walk you through step by step of what you are going to go through the side effects of it and stay in constant and clear communication. However that seems to be a pipe dream this seems to be the exact thing that we are running into as far as no communication I am in just disbelief of it all. I would suggest for you and your boyfriend to make an appointment ASAP with his doctor not the NP and show this doctor what is going on he cannot ignore the physical appearance of your boyfriend address the situation with the doctor and tell them that you need answers or we need to stop treatment until he can heal. It is just mind blowing I hate that you are going through this as the caregiver I cannot imagine the depression and the disparity your boyfriend is feeling. My niece who has stage 3 squamous cell carcinoma we have fought and went through the ringer to get her insurance then we got a doctor's appointment with an oncologist we thought she was going to be super awesome but her right hand lady has been every bit of a thorn in our side they tried to say that we could only get the pet scan done at a location that was more than two and a half hours away from where I live I repeated over and over this was not doable(upon researching it's part of there office's) and then all of a sudden radiation would have to be done (120mile round trip) 5 days a week that would mean 600 miles a week on my car and me paying for gas and when I address the doctor with that concern I was told I'm sorry there's nothing I can do about that but for this kind of cancer we have to fight at a certain way almost like they were purposely staring us to their facilities and because we have stayed local and went around what they wanted to get these orders done the Pet Scan and the MRI the lady that works for our doctor who does the scheduling and the orders has purposely and knowingly derail this at every corner along the way. My niece has been through it with her and every time my niece sees a light at the end of the tunnel with a scheduling a procedure or test this lady and her doctor's office Derailes it and it's a matter of time before my niece becomes overwhelmed and depressed and it's like these doctors or at least their workers and their office that's supposed to be there to help you could care less. What happened to being compassionate? Clearly we are going to have to seek another oncologist but for now we have to stay with this one until she gets her staging done for the second time where we will also voice our concerns of everything that has taken place but I'm 95% sure nothing will be done of it or even addressed.

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Replies to "I'm so very sorry that you and your boyfriend are going through this. It seems as..."

I am so very sorry this is happening! Unfortunately, the more I research and the more people I talk with, I’m finding this to be a common theme.
I have been doing everything in my power to research/document all that is and isn’t being done, and communicating in writing with the doctors and medical professionals. I would strongly suggest that you document everything.
This might also help your situation, several people have told me they have had better experiences if they are in a place where everything is done under the same roof. I know that Cleveland clinic has a place for family to stay while a person is going through cancer treatment. Mayo also treats their patients under one roof. Maybe they could assist you with the traveling issue.
What is particularly concerning for me is not being given the time to understand or options for treatment. We were basically issued a last minute Edict by a NP not a doctor “you are going to have radiation”. No options, or no discussion, no explanation. The standard cancer protocol (surgery, radiation, chemo) seems to be a one size fits all mentality and cancer is anything but that.
I found out too late that he absolutely had other options besides radiation, but once radiation starts the damage is done. You can’t rewind the life long inescapable side effects once your DNA is damaged. That’s why they call radiation, “The gift that keeps on giving.”
If it all possible,
I would highly recommend contacting Mayo Clinic and/or Cleveland Clinic. I feel they will give you options alternatives and hopefully better communication.