BREAST CANCER “WHAT THEY DON’T TELL YOU” ONE WOMAN’S JOURNEY

By Susan Allen

This book is the story of one woman being diagnosed with breast cancer and receiving treatments that were absolutely bizarre. It turned out to be a fiasco that no one should ever have to endure uninformed.. The tests and procedures were at times unnecessary and at other times done with no explanation about what they were or what they were going to do Some of the procedures were absolutely barbaric! Everyone should know what is going to happen to them if that's their wish. If you don't want to know anything about anything, that works too, but I DID want to know. Even with all the research I had done from start to finish there were still surprising shocks at every turn.

• Language: English
• Publisher: BookBaby
• Release date: Jan 1, 2018
• ISBN: 9781543918977

Book preview

1

The Beginning of the Terror

It was July and time for my physical. I made an appointment with our Primary Care Physician (PCP). He’s a great family doctor who is genuinely interested in the family. I got so lucky when I found him because like everyone else hit with insurance companies running our lives, our coverage in the small town where we live got too expensive through our employer. Our new insurance plan meant we would have to drive 60 miles from home for all appointments and treatments. I had been going to our old family doctor for 30 years. He delivered both my babies and had taken care of them throughout their lives and ours. Then, in the blink of an insurance eye, I was on the internet looking for a doctor in the town we would have to go for care. That sounds right doesn’t it? So, like any reasonably intelligent person I picked our doctor because I thought he had kind eyes in his publicity picture! I’m not sure with that confession you should take anything else I say with any sense of confidence that I have any idea what I’m talking about. Miraculously, we got lucky and he turned out to be a very thoughtful, thorough, conscientious, and kind man.

My physical was fine, the doctor checked my breasts. No lumps, bumps, no problem. I called for my routine mammogram but for some reason I didn’t get a call back until August and I didn’t get my appointment until September 10th. The tech asked all the routine questions:

Any previous recalls for re-imaging? No

Any family history of breast cancer? One cousin

Have you had your physical this year? Yes

Did you have your annual mammogram last year? Yes

The mammogram goes fine and a week or so later my husband and I are sitting at the kitchen table going through the mail and there is the notice from the mammogram clinic. I said to my husband This is awful. Why do they just send these in the mail? What if there is something wrong? I’m ranting and raving that someone should call instead of sending these in the mail and he says he’ll open it. Okay, go ahead. He opens it, looks up, says nothing and I said WHAT? The poor guy tells me it says you have to go back for further imaging. I must say that was the first heart drop on a long string of heart drops to come. I called the clinic the next morning and I’m told I can’t get another appointment until October 1st. Wait a minute, you mean I have to wait almost three weeks for the follow-up exam? Why don’t they keep a couple times open specifically for the terror-ridden patients that have just gotten the written additional imaging needed letter. Now, this will shock you! THEY tell me we’re really busy and that’s the earliest appointment we have. Well, this is just great! I have twenty-two days to wonder, worry, and borrow of all the trouble I can find.

I drive 60 miles for the second mammogram and it is much different than the first. I guess I thought it would just be another routine one and I was preparing myself for another week to ten day waiting period for the results -WRONG! The mammogram tech was very specific about the area that was being tested which was my left breast. That’s when I learned where the problem was. THEY don’t tell you that. You’re in the dark until they use smaller and smaller plates and scan only the problem breast. Wouldn’t you think the tech would sit down with you before the mammogram and at least have the decency to tell you which breast where the problem is, and maybe even show some small kindness? NOPE! It’s all business. I think I’m going home to be at stroke level until I get my next letter but oh, no she tells me to go back out in the waiting area and she will take the images to the radiologist now for him to review. Oh, this isn’t right. I’m so prepared for the long wait for the letter, not sitting here by myself getting results NOW. I’m so not ready for this to happen here and now. I sit for 30 minutes or so reading, not comprehending, and freaking out at the breast cancer pamphlets they have all over the waiting room. This absolutely cannot be happening.

The technician finally came back and tells me I need to make an appointment for an ultrasound. I ask her what does that mean? She tells me there is still an area of concern and that I need to schedule an ultrasound as soon as possible. The scheduling desk is around the corner to your left so stop there on your way out. I start walking and nothing is making any sense. I’m not in my right mind at this point so I stop like a good little girl doing what I’ve been told to do. They’re all just so business like. They do this every day and I don’t matter to anyone except me. I receive my little appointment card for the ultrasound and I’m sort of shooed out of the way. They’re quite busy you know, so don’t interfere with their day. I drove the 60 miles home by myself going through the entire emotional roller coaster. It’s nothing to oh, my God, I have breast cancer over, and over, and over.

The only history of breast cancer in my family is a cousin on my dad’s side. My mom died very young (63) from leukemia, one uncle died with colon cancer, and another uncle with esophageal cancer so there is certainly some family history of cancer. I was only 32 years old when my mom died, my daughter is 32 and my son is 31. I have been so lonely all these years because I haven’t had her in my life and it drives home the fear of dying so young and not being here for my kids during their adult years. My granddaughter is eight years old and she is absolutely the light of my life. The thought of not being able to watch her grow breaks my heart. All of us have lost someone very close to us and when you are faced with a diagnosis of cancer and potential death you have a perspective like none you’ve been faced with before. We somehow always believe it’s just not going to happen to us. Whether it’s what we wish never to happen, we want to stay in denial, or we’re oblivious to life’s reality and we just hope we’ll be spared the cruelty of cancer.

But, what am I talking about - quit borrowing trouble where there may not be any. I don’t have breast cancer! I just need to have an ultrasound. I’m sure it’s just a cyst or a bad reading of the mammogram or any number of things beside breast cancer. Yes, that’s it. I’m sure of it. No, I’m not. Yes, I am. No, I’m not. Oh, dear Lord, please don’t let it be the dreaded C!

Well, I’ve told the kids that I’ve had a bad mammogram and that I need to have an ultrasound. They are all reassuring me that everything will be fine, but there is such a nagging feeling in my gut! Oh, and this will shock you. The wait will be five more days before my appointment. In the meantime, I’ve called my family doctor to try to get in to see him because I just want to talk to someone I know will listen to me, and that I truly believe cares about me. But, this will surprise you once again. I can’t get in for three weeks. I plead with the receptionist telling her I’m completely terrified that I have breast cancer. Please get me in earlier or at least put my name down and call me if there is a cancellation and I’ll be right there. NOPE! THEY don’t keep lists for cancellations and that is the earliest I can get in. Someone please stop the merry-go-round I’m on and let me get off!

I need to interrupt my story for a minute to tell you how difficult the emotions you will deal with can be on you. I’m writing this as I have just had my third chemo treatment this week and I’ve been sick for five days. I’ll describe the side effects THEY don’t tell you about a little later, but this is about the heartache you’ll have to deal with. I wanted to tell my husband about how miserable I am from the poison THEY call chemo. I am sick, and I hurt so much but I feel too guilty to tell him just how horrible it is. You are truly in this by yourself! You will have great supportive family and friends, but you will have to realize that on many occasions you will feel like they just do not want to hear it, see it, think it! Now is certainly not the time you should be trying to make YOUR cancer easier on everyone else, but that’s what happens. Here’s your TIP: toughen up because your walk down this road really is one only you will take. It’s gut wrenching but it’s true.

Now, back to the next step on the terror trail. My daughter has met me in the radiology department for the ultrasound and we’re both upbeat and happy to see each other. Truth be told I would not be here if it weren’t for her. I kept putting off having a mammogram for years and she kept staying on my butt. I