March Ultrasound

As most of you know, I recently had a breast ultrasound to check the status of the c*****ous tumor hanging out in there. It had been three months since I had any imaging done, so I thought it was time to check things out.

First, let me back up and start by telling you about my appointment with my PCP and how that came about. Many months back I had an appointment with my primary care physician, who is a family practitioner. He had asked me to keep him in the loop concerning my condition and forward results of any tests to him. So after December's testing I had sent him the results via email like he had asked. Several weeks went by when I started playing phone tag with him. Eventually, I guess he figured he would just send me a letter.

It was short and sweet and to the point. It read:

Hey Tara,

Thanks for the email and update. As you clearly know imaging isn't 100 percent and can be interpreted in various ways. I am glad you are keeping an eye on things and if at any point you want to discuss them I am happy to do so.

And, of course, I greatly appreciate your updates as I am thinking about you and how it is going.

Hope you and your family are well.

Sincerely,

Dr. Good Guy, MD

I wasn't sure exactly what he meant by testing isn't always 100% accurate, but I thought, hey, why not, a fresh pair of eyes would be a good thing and I was curious what his take on the situation was.

Once in the exam room, he positioned his laptop between us so we could look at the results of the last three sets of imaging together. He didn't have one negative thing to say. If fact, he was very encouraging. He said he respected my decision and that I had obviously spent a lot of time researching everything I was doing. He asked me how he could be of help to me. So I asked him for a script for another ultrasound and blood work. He even asked me if there was anything specifically I wanted tested in the blood work. He's a keeper.

During the appointment, I thanked him for his willingness to help me, to which his reply was "why wouldn't I do everything I can to help you?". That's how doctors should be. I have no idea whether he agrees with my decision or not. That really isn't the point. The point is that he respects my decision. He respects the fact that it is my body and I should have the choice to treat my ailments how I see fit. I have read a lot of stories where this wasn't the case. Then I experienced it for myself as you'll read about in a minute.

One of the things I had discussed with Dr. Good Guy was where to go for the impending ultrasound. I had brought up going to Hillman C***** Center for their expertise. C***** is what they do. Who better to go to, right? He agreed, stating, like anything else the more you do something the better you get, the more knowledge you gain in that area. So, Hillman it was. Another good reason to go to Hillman, so I thought, was because this is where I had had my original imaging done.

I knew what this would mean for me, though. I knew this would mean coming face to face with the opposition. I had made up my mind that I was going to go in there proud of the decisions I had made, confident of what I believed in and defend my position strongly. HA!! Not quite what happened.  But it was a nice thought. All the pep talks in the world couldn't have helped me out that day.

The first thing you do after signing in is fill out a form - family medical history, prior lumps and bumps and c*****. All the usual questions. I wrote in large print letters: CURRENTLY HAVE C*****, TRIPLE NEGATIVE, DIAGNOSED 2/18/13. Important detail for later in my story.

They shuffle you from the main waiting room to another one where you sit undressed from the waist up awaiting your turn wearing a fashionable hospital gown sitting alongside a handful of other anxious woman, separated from any support person who may be there with you. I, of course, already knowing the system, chose to go by myself.

After a very nerve racking twenty minute wait which I spent thinking of quick witted replies for possible questions, this seemingly friendly middle aged lady came to the doorway and called my name. To make sure they have the right person the first thing they always ask you to do is state your name and date of birth, which I did. Then she said, "Hello, my name is blah, blah, blah, I am going to be doing your mammogram today". She proceeds to tell me how if I have a lump the first thing the doctor is going to want is a mammogram and not an ultrasound and since my last mammogram was in 2010 (yes, she said 2010) then I was due for my yearly anyway.

WHOA, WHOA, WHOA, stop the train!! I wasn't there for a mammogram. I was there for an ultrasound. And furthermore, I had never had a mammogram prior to 2013 when I was diagnosed for my known carcinoma!! So clearly they have the wrong person even after having all my information. I politely explain to her, because I had made a conscious decision to be kind and Christ-like no matter what, that I am not there for a mammogram, I already know I have c*****, and I never had a mammogram in 2010. Not a great start to my appointment, but hey, everyone makes mistakes. I was willing to overlook that little mishap and move on.

She returns a few minutes later, after, I can only assume, retrieving the correct medical records. She sits down next to me to ask me a few questions.

"The last thing we have on file for you is that you were going to Dr. So and So at Magee Women's Hospital".

So this was it. It was time to have a moment of truth.

 "Yes, then I went to C***** Treatment Centers of America (CTCA). Then, this is where my story differs from most, after two rounds of chemotherapy I decided I was going to seek holistic treatment. I have been doing that for almost a year now".

Want to know her reply?

 She said very excitedly, "Oh that's great. I'm so glad to hear that."

 Sounds good, huh?  What a relief. She was a supporter.

Then she asked me what doctor I was seeing. Her words, "who do you see for something like that?". With my defenses down, because I thought she was on my side, I told her. "Oh, I went to Dr. What's His Name in the beginning. He gave me a list of supplements to take." (Keep this in mind, too.)

Luckily, I was very careful with my wording because as I would soon find out, she was anything but on my side. I am well aware of the fact that it is against the law to claim to treat c***** by any means other than those approved by the good ol' FDA. Chemo, radiation, surgery being the main ones.

 And truth be told, I really don't see anyone. I had a couple of appointments early on in the process where I was given a specific regimen to follow to aid in boosting my immune system. The couple of nutritionists that I did see made it very clear that they don't treat c*****. I even signed papers stating that I fully understand that they were not treating me for c*****.  They treat my immune system, my immune system fights the c*****. That's how it works.

After that little conversation she said the doctor would still like a mammogram because I was "due" for my yearly anyway. This is where I started to feel just a tad defiant. You see, I am not in favor of the yearly mammogram that they tout. Mammograms use radiation and radiation causes c*****. I am already at high risk for c*****, obviously, and really I didn't see the need for it in this particular situation and I told her such.   Agree or disagree, that is my position and I should have the right to choose what I feel is best for me without further harassment.  But being that I was on their field, I eventually gave in and played ball by their rules. Though, it was apparent that Ms. Blah, Blah, Blah was very annoyed with me and couldn't understand my point of view at all.

Now the next part is where I truly failed. I apologize to all the people who think like me for doing such a horrible job at representing our position.

Keep in mind that while getting the mammogram there was conversation the entire time. For anyone who has had one before you know that it's not a super lengthy process but not super quick either. It might take 10-15 minutes. So just like when you get your hair done, even if you'd rather not talk, you make polite conversation. I thought that was what we were doing, at least at first. Until I realized it was really more of a time for this lady to insult my intelligence and interject her unsolicited opinions. Thanks, but no thanks, lady.

While having the mammogram done she noticed the discoloration of the right breast and questioned the reason for it. She referred to it as bruising, but in reality it was caused by a hand-held infrared light. I use it nightly and on occasion I have been known to dose off, leaving it on for a few extra minutes. So, technically it is a burn, not a bruise. Anyway, I explain this to her. Now, people can ask, "why?" and be genuinely interested in learning something, or they can ask, "why?" with an accompanied look of disgust on their face and not really care to learn anything. It was definitely the latter of the two that she asked me. I had explained that I had read somewhere that it could help. Her reply, "you should really be careful what you are reading", of course, with the same look upon her face.

Now, since this was said sometime after she had told me that there was no scientific evidence for what I was doing, I was definitely good and annoyed at this point. Up until then I was quiet. I had tried to defend my position but my mind was totally blank. All the quick witted responses had been buried under a huge cloud of disbelief that she was actually talking to me like this. Was this the same lady who couldn't manage to read the form that I had just filled out with the large print letters stating that I currently had c*****? Is this the same lady who just pulled the wrong person's medical files and didn't catch it even after I gave her my date of birth? And now she wants to tell me about medical evidence and warn me to be careful of what I read!!! It's not as if I read what to do on the back of a Cracker Jacks Box.

Why couldn't I think of something to say?  As hard as I tried, I had next to nothing. It's harder than you may imagine to articulate a reasonable point while having your breasts smashed. And as if having your breasts fondled by a strange woman isn't degrading enough, I had to have my intelligence questioned at the same time. Thanks for the extra salt tossed in my wound, lady.

The only thing I got out of my mouth was that the theory behind the infrared light was if the c*****ous cells were heated above 108* F they couldn't survive. I'm not even sure if that's entirely true, but it sounded good and I knew she wouldn't have any idea what I was talking about. I would have liked to, in retrospect, told her maybe she should read more, or maybe she should focus on doing her job correctly before worrying about how I choose to treat myself. Or perhaps she should try to learn something for herself instead of just regurgitating what is spoon-fed to her by the medical talking heads. So, yes, maybe it was best that I lost my words that day.

If only this were the end of my appointment, I would have left as one annoyed little camper and been on my way. All the insults and I hadn't gotten the ultrasound that I had come for.

Once in the next room, I waited just a few short minutes, long enough for the breast smashing tech to inform the radiologist that a nut job awaited her in room three.

The conversation went a little something like this.

"So, I understand you had two rounds of chemo and then stopped to seek alternative treatments and are now seeing Dr. What's His Name?"

Well, I'm certainly not getting caught in that net. I sternly reply, "No, that is not what I said. I told her that I buy my supplements from him. That's all."

"So who do you see for your c*****?"

"I don't see any doctor for my c*****. I consult with my primary care physician regarding any tests results and that's it."

If I was going down in flames, I certainly wasn't trying to take anyone who has tried to help along the way with me. I saw the line of questioning as a blatant attempt to try to incriminate doctors who won't toe the line. If you think I am being paranoid then just watch Burzynski: C***** is Serious Business on Netflix. Then get back to me about paranoia.

Anyhow, turned out that this doctor was the same doctor who had done my biopsy the year before, the one I had questioned about the importance of placing a titanium marker at the site. Now for round two.

I sit up after she was done. I had asked if she would discuss the results with me or if I would have to wait until my PCP called me to know the results. She said she would discuss them with me.

Now, this is where things get strange. And well, when things don't make sense, I start to question what I'm being told.

She said, "I'm concerned because it is bigger than it was last year."

Yep, strange. I had the same look on my face when she said that, that you probably have on your face right now reading this if you've been following along for awhile. P-U-Z-Z-L-E-D is the only way to describe it.

"This is very odd. This is so completely different from the results of my ultrasound done three months ago".

She was taken by surprise that I had had additional imaging done. "You had another ultrasound done? Somewhere else?"

"Yep. Three months ago. And three months before that. And three months before that. And this is completely different from what any of those said."

She shrugged her shoulders and went back to pointing at the images still on the screen. "It's a different shape, but bigger."

"Hmm, well, it obviously isn't growing at the rate it was because the biopsy results showed a growth rate of 90%."

Now she was speechless. I'm sure if the oncologists with many more years of experience than her had never had a patient with such an aggressive c***** than neither had she with her many fewer years on the job.

At this point I was too confused to feel defeated. That wouldn't come until the drive home.

I was staring at these images, but they mostly don;t mean much to me because I don't know what the heck I'm looking at. So I ask her to explain some things to me. I'm looking at grey matter vs. black matter. What's the difference? This is how it was explained to me. Grey was the harder, thicker tissue. C*****. The black was either cyst-like or necrotic tissue. Necrotic? Dead tissue.

Keep in mind that at this point in the appointment I am very interested in their take of the situation. They clearly don't think I have two brain cells to rub together and well, let's just say I decided to play along.

Necrotic? Why would there be necrotic tissue in the tumor? And her explanation? Because the c***** is eating away at the surrounding tissue.

Umm, yeah, I don't think so. Besides, it was inside the borders of the tumor. Not in the surrounding tissue.

I asked if she had used Doppler to check for blood flow. She hadn't. So she had me lay back down to take more images. There is blood flow. I'm thinking blood flow is good. Blood flow takes the needed supplements to the cells to kill those bad boys. But let's check to see what the doctor thinks of blood flow.

She says blood flow is bad. Why? Because the blood feeds the tumor. Well I guess if I was eating animal protein and sugar it would be. But I'm not.

Any guesses where that necrotic tissue was? Same place as the blood flow. That's where.

To make matters even worse, when I got the written report from the hospital the test results were stated in the report in two different places and they were different numbers in each place. So I don't even know which one might be correct or how greatly exaggerated. However it may be. UGH!!

Now, just for the sake of argument, let's assume that this doctor is telling the truth. We would then also have to assume the last three ultrasounds were wrong. Let's say that for the last year I haven't managed to shrink the tumor at all. Have I failed in what I was trying to accomplish? No, I don't think so. Worst case scenario I have only stopped the tumor from growing and spreading and I have not managed to shrink it. This is one possible theory.

Theory number two. This doctor exaggerated the margins of the tumor to emphasize her belief that I should treat my c***** with chemo, radiation and surgery. She used her power to tamper with test results in order to use those results as a scare tactic.

I've come up with theory number three and four but really they just get way more confusing from here. I honestly don't know what the complete truth is at this time. Every theory leaves me with more questions than answers. Not one of them makes sense with all the pieces to this puzzle.

So while the actual size of the tumor is questionable, there are certain things that we know for sure, verified by the mammogram and ultrasound images done that day. After one year of no conventional medical treatment of a very, very aggressive breast cancer (90% infiltration/growth rate) this is what I know to be true:

1. The c***** is confined to one tumor in the right breast. ( size undetermined at this time)
2. No lymph node involvement
3.It has been determined that it is in fact the titanium marker that was placed in the middle of the tumor that I can now feel. (but yet somehow I am supposed to believe the tumor is bigger)
4. The tumor that once was protruding from the breast surface feels flat even though the breast itself is smaller because I have lost 25 pounds since then.
5. Parts of the tumor have either become cyst-like or are necrotic as compared to previous images
6. My Ph levels are consistently in the normal range

I'm not sure at this point what someone's argument would be against what I am doing. I know that my decision to not go the typical route has annoyed people and made others very angry. Everything I am doing is based on scientific evidence, even though it isn't well documented or widely excepted by the medical establishment.  More people should be asking why it isn't. Why aren't people told that c***** feeds off of animal proteins and sugar? Why if what I am doing is working am I the one seen as crazy?


(NOTE: Just in case you hadn't figured it out, all the names in the retelling of this story have been changed to hide their true identities )  ;)






  

What is that?

February 18th marked my one year anniversary. In some ways it's hard to believe that it has already been one year and in others it's hard to believe that it hasn't been longer as it feels like on some days as though it has been many.

I've been thinking back on the days leading up to the diagnosis lately, both the day that I had the mammogram and ultrasound and the day of the biopsy. I can quite vividly remember the expression on the radiologists face as she was looking at the ultrasound screen. I had gone to Hillman Cancer Center where the radiologist was actually the one doing the ultrasound not a technician. She chose her words carefully and at that time I was clinging to any possible diagnosis other than the dreaded "C" word. She had given me the name of something else that it could have possibly been,  as we later found out that would be false hope.

I returned on a different day to then have the biopsy done. I thought I knew what to expect as they had described the procedure to me when it was determined from the ultrasound I would need a biopsy done. Only as I sat in the exam room waiting all alone I took notice of some small cubes of clear plastic. In each of the several cubes were very tiny, differently shaped pieces of metal. I would soon find out they were titanium markers. I remember thinking that if one of those things were going to be placed inside of me that no doubt that is something that would have been told to me. Right?

After someone came in and asked a bunch of standard, routine questions I was escorted to the room where the biopsy would be done. I was then sitting in the room on the procedure table with three hospital employees around me when finally they explained that after the tissue sample was taken a titanium marker would be placed in the tumor. I was wrong! I had a hard time believing that everyone up until that point had left out what I thought was such an important detail. I like making informed decisions, but evidently that wasn't going to be possible. I argued against it, but outnumbered 3 to1 and they were saying it is absolutely necessary, I really didn't feel as though I had any other choice. I ultimately gave in with the thought that I would eventually have a lumpectomy and it would no longer be of any concern.

Several days later I learned the results of that biopsy. And here I am one year later.

A few days ago, I was feeling what is remaining of my once stage II sized tumor and felt something peculiar. Imagine the thinnest gauge guitar string possible was wrapped around the tip of a pen then the pen was removed leaving only this small, rounded, very thin wire. That's what I can feel peeking out from surrounding hard tissue. Now I can't say with 100% certainty, but I believe that what I am feeling is the titanium marker that was placed during the biopsy. And since I wasn't able to feel it until a few days ago, I do believe that is a good indication that the mass is continuing to shrink.

A lot of people have been asking me if I have gotten another ultrasound, yet? I have not. That's the plan, though. So after I have I'll be sure to let you all know what those results are. For now, continued prayers are appreciated.