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Thursday, April 30th, 2009

Consultation – Dr Salloum

The consultation with Dr. Salloum was… interesting.
To Say The Least.

It has been brought to my attention that,
while the science of medicine
is an established science,
The practice of medicine
is an individual philosophy.

The Friday before the appointment, I sent Dr. Salloum a complete set of all my records – everything I had. Including CD copies of the 2 PET/CT scans. And brought copies of more info I acquired in the few days since I sent the original packet to him.

According to Dr Salloum, he…:

#1. …would have treated me for a staph infection no more than 2 weeks before he did more tests, biopsy, etc. With my Family history, he would have much more proactive.
With my family history, I should have been more proactive, but I Trusted my Doctor to be knowledgeable and make appropriate suggestions / decisions regarding my treatment . He said it was a staph infection – I Believed Him.

#2. …believes that I have Inflammatory Breast Cancer. (reference Feb 25 2009 Breast Needle Core Biopsy Results which indicate “Infiltrating Ductal Carcinoma”, page 1, page 2, page 3, page 4, page 5)
This is stunning (like a gun) news to consider, but many of the common symptoms are certainly more closely related to what I experienced. It just gets better and better…

#3. …is hopeful that the 4 vertebra tumors (supposedly indicated in PET/CT Scan #2) are a “false read” due to the large amount of Neulasta (the bone marrow stimulator) that is currently in my body. Dr. Salloum indicates that one Neulasta shot is good for up to 3 weeks (I had been told only 3 days); getting a shot every 2 weeks for 8 weeks would probably add up to a “large” amount.
While that would be a Great change of fortune and would certainly explain the increased back pain, I’m gonna stay realistic until I get test results that say otherwise. Bottom line – I have Breast Cancer, That will not change. However… one can certainly Hope for a better result for the metatastic bone cancer diagnosis!

#4. …strongly suggests that I continue to follow the traditional treatment / recovery of chemo – surgery – radiation; he recommends a smaller dose of chemo, administered every week for 12 weeks, vs a larger dose administered every other week for 8 weeks.
If I continue on the chemo path of treatment / recovery, this is definitely something I’d look into.

And That is the new information that I got to put into my pot and stir… Here’s a copy of his “doodling notes”…

Tags: Dr Salloum

Posted in Cancer, Doctors, Medical Opinions, Results | 7 Comments »

Monday, April 27th, 2009

Good News!

Went to the Burzynski Clinic today… Good News! It Does NOT appear that the cancer has spread to my liver!! YAY!!!

With That said, they feel pretty confident that it has Not spread to my brain. I will still feel better with test results in-hand. That will come in several weeks (a month+?), after the chemo has had a chance to leave my body and we see if the headaches, nausea and dizziness can be attributed to chemo or maybe more. Hope not more. More would not be good.

It still appears to be in my bones. That has not changed. But “only the bones” is less than we thought, and that is something good to hold on to.

I still have not decided if Burzynski is the path I will take… the “alternate” path, leaving further chemo treatments behind me, in the dust, a bitter memory of a failed trust.

I can only Hope.

Tags: bone cancer, liver cancer

Posted in Burzynski Clinic, Cancer, hope, Results, scared, Tests | No Comments »

Friday, April 17th, 2009

PET Scan #2 – Results

It’s like I’m in some cosmic toilet that just keeps flushing, and I’m the turd that just manages to hang on.

Yes, the preliminary results are in, and they are not good. They could be worse And I imagine they will be, cuz we are waiting on more results.

Let’s present the “good” news…

While the size/condition of the breast tumor has not diminished enough to be considered significant, the activity within the 6 lymph nodes Has decreased considerably. So, the “evil of chemotherapy” seems to have done Some good Despite the “totally wrong” vitamin regime I was on.

Now, on to the Bad News…

We appear to have Metastasis

There are (most probably) 4 vertebra tumors – T9, L2, L3, L5 and possibly the mid sacrum (definition of sacrum) or see this illustration

So… the backache I’ve had the past 6 months is Not attributed to my weight or being out of shape, it’s most likely attributed to cancer in my bones.

Metastastic Bone Cancer.

Secondary Bone Cancer.

Bone Cancer.

Unfortunately, the Neulasta, which promotes the production of white blood cells, also makes it difficult for the PET to distinguish between healthy bone overproducing cells and cancer. So it will be 2-3 months after I stop taking the Neulasta before we can get a truly accurate reading for the bones. The vertebra are pretty definite in reading, it’s the long bones that we are not sure about…

But wait boys and girls, there’s more.

My liver enzymes are up very high. Too high. So high in fact, that it’s indicative of metastasis to the liver. Those results won’t be in til early next week (April 20-24), but it’s pretty much a given.

And… for the cherry on top of my party

Since we have activity in the bones and (probably) liver, we need to do a scan to check the brain cuz breast cancer typically metastasis to the bones, liver and brain.

At this point, I’m looking less like a Stage 2

and more like a Stage 4.

It’s a party.

In my Body

A cancer Party.

It’s my party and I’ll cry if I want to.

I’m screaming.

Tags: bone cancer, brain cancer, liver cancer, PET Scan, PET/CT Scan, scan

Posted in anger, Cancer, despair, Emotions, Results, Tests, venting | 5 Comments »

Friday, April 17th, 2009

Tumor Markers – Baseline

I had some blood work done which will chart my tumor markers, specifically something called CEA… My last oncologist never did this test, so I have idea what my baseline was, but Burzynski Clinic uses them, as does MD Anderson, so I have to hope they mean Something.

From what I’ve found online, it appears that some Drs find Tumor Markers a good resource, while others don’t place much weight on such tests as a diagnosing tool.

My EGFR (Epidermal Growth Factor Receptor, aka HER1) is 86, reference range is 67-87, so it appears that I am “borderline”.

EGFR: The protein found on the surface of some cells and to which the epidermal growth factor binds, causing the cells to divide. This epidermal growth factor receptor is found at abnormally high levels on the surface of many types of cancer cells, and may be why these cells divide as actively as they do. Also known as EGFR or ErbB1.

My HER2 (Human Epidermal Growth Factor Receptor) is 2.8, reference range is <11.5, so it appears that I am good on that one…

HER2: A gene that helps control how cells grow, divide, and repair themselves, important in the control of abnormal or defective cells that could become cancerous.

My CEA as of April 15 2009 is 63.1 ng/mL

I’m told that is high…

The cost is pretty expense, I’ll look around at other labs and see if I can get a break…

What is a Carcinoembryonic Antigen (CEA) Tumor Marker Test?
“Question: What is a Carcinoembryonic Antigen (CEA) Tumor Marker Test?

A carcinoembryonic antigen (CEA) tumor marker test is a blood test that is done during treatment to monitor your progress. The results of this test may show how effective your treatment is on your cancer.

Answer:
About Carcinoembryonic Antigen (CEA)
The carcinoembryonic antigen is a protein that shows up in your blood, and is normally found in the tissue of a developing fetus. After birth, the mother’s blood levels of CEA should disappear. Smoking produces higher than normal levels of CEA, so you should abstain from smoking for several days prior to your test.

Normal and Abnormal Results of Your CEA Test
A normal value of CEA is a range from 0 to 2.5 micrograms per liter (mcg/L). For a smoker, expected levels of CEA range from 0 to 5.0 micrograms per liter (mcg/L). High levels of CEA may be an indication of cancer, but some people will test high, even though they do not have cancer. The results of a CEA test must be considered along with your symptoms, general health, lifestyle factors and the results of other tests.

Uses For the CEA Blood Test
Doctors may use the CEA blood test for a variety of reasons:

Test for possible cancer
Measure the effectiveness of cancer treatment
Catch an early recurrence
Determine possible metastasis“

Other Tumor Marker Info:

“Tumor Markers; AFP, HCG, CA-125
Tumor markers are molecules occurring in blood or tissue that are associated with cancer and whose measurement or identification is useful in patient diagnosis or clinical management. The ideal marker would be a “blood test” for cancer in wich a positive result would occur only in patients with malignancy, one that would correlate with stage and response to treatment and that was easily and reproducibly measured. No tumor marker now available has met this ideal.

Tumor markers can be used for one of four purposes: (1) screening a healthy population or a high risk population for the presence of cancer; (2) making a diagnosis of cancer or of a specific type of cancer; (3) determining the prognosis in a patient; (4) monitoring the course in a patient in remission or while receiving surgery, radiation, or chemotherapy.

No test meets all of those requirements. Specifically, no marker has been established as a pratical cancer screening tool either in a general healthy population or in most high risk poulations. The reason for this is the relative lack of sensitivity and specificity of the available tests, given the low prevalence of cancers in most population groups. Given the low prevalence of cancer in general, even tests that are highly sensitive and specific may have low predictive values.

Tumor markers include many substances that are not readily systematically organized.Those discussed here are generally products or the cancer cell, although none is unique to cancer cells; they represent aberrant tumor production of a normal element. Some markers are produced by the organism in response to the cancer’s presence.“

Tags: CEA test, Tumor Markers

Posted in Burzynski Clinic, hope, Results, Tests | 9 Comments »

Thursday, April 16th, 2009

PET Scan #2 – April 16 2009

Went to take the 2nd PET Scan today. What a difference from the first one – in many ways…

Location:
Houston Medical Imaging
3310 Richmond Ave
Houston, TX 77098
713.524.9555

Technician: Juliette

It’s really a beautiful building with a nice courtyard and central fountain… someone there is a collector of geodes and rock/mineral formations cuz there were Many of them, especially the Enormous one at the front door. It’s a purple amethyst geode, probably close to 6ft tall. Too bad someone painted the outside green, cuz it looks like a big misshapen pickle…

Anyway, back to the PET Scan
It was $1400, and that was the discounted rate. Wham.

The prep for the procedure itself was much different than the first one at North Cypress Medical Center.

At Houston Medical Imaging, first Theresa, the orderly, put me in a room, sat me in a nice comfy overstuffed recliner, and covered me with a blanket. There was no TV or phone like at North Cypress Medical Center, but I had brought the laptop that Rob was lending me, so that I could Blog, and Mom left her cell phone so I could make calls (she was waiting in an outer waiting room while I was being prepped).

Then the technician, Juliette, came in to administer the trace. We talked a bit as I was prepared for the injection. She was recently expecting, so she could not administer, but she was there making sure everything went as procedure required. When she saw the cell phone, and I asked to plug in the laptop, she looked at me like I was crazy.

What she told me was pretty much as follows:

~This is a very sensitive test, and in order to get accurate results, you need to lie as still as possible, no unnecessary movements, no stimulation – no phone, no laptop, no water, nothing. We will administer the injection, then we will turn off the light and close the door. You will need to relax for the next 45 minutes. After 45 minutes, you will go to the bathroom and empty your bladder, and then you will have the scan run.~

Wow. BIG difference from the first test… could be why it was “subpar”.

The only thing, besides the actual test being performed (of course) that was similar between the 2 scans, was that both places had very nice people. That helps…

So they injected the trace, wrapped me up, turned off the light and closed the door… I quickly realized I was getting cold, so I did call out for more blankets, which were brought, plus an extra one to wrap my cold head. For the next 45 minutes I drifted in and out of a light snooze.

When the time was up, Theresa came to escort me to the Scan Room, and we got it going. I’m not claustrophobic, so I managed to fall asleep a couple times during the scan too.

I hope we get a good read and some good news comes my way. So much bad news lately.

After the scan was complete, Mom and I packed up and I went back to work.

I get the feeling there will be quite a few days like this… medical tests and then back to work. ~sigh~

(Results HERE)

Tags: Houston Medical Imaging, PET Scan, PET/CT Scan, scan

Posted in Burzynski Clinic, Cancer, hope, North Cypress Medical Center, Nutrition, Tests | 4 Comments »

Wednesday, March 18th, 2009

Needle Aspiration Biopsy – July 18 2008

I had the Needle Aspiration Biopsy back in July of 2008. It was not too painful, but Definitely necessary.

I remember when Dr. Keller told me that the pathology report showed a benign cyst and “only” a very bad staph infection. Given my Family history of cancer, I was So Very Relieved.

Looking at the report I don’t see where it says anything about a staph infection at all… obviously I don’t know how to read a pathology report.

Tags: Needle Aspiration Biopsy

Posted in anger, Dr. K. Keller, frustration, Results | No Comments »

Friday, March 13th, 2009

PET Scan – Results

Dr Keller FINALLY called with the PET (Positron Emission Tomography ) Scan results today. Seems there was a miscommunication between him and the Radiologist as to who was to contact me. I Would have thought it would be Dr. Keller, since he IS my Dr. But better to get the info late Friday than to have to wait out the weekend.

Despite how I feel cuz of the chemo, it’s not such a bad day for me. According to what Dr. Keller read to us (both me and Mom) from the report, the results show that the cancer has not spread! He said that there was no evidence of the cancer having spread (aka metastasis), that it was all contained within the breast!!! We Are Sooooooo Relieved!!! Now I can get a bit more normal sleep!!!!!

Not all good news – a tad of slightly bad – Dr. Keller did say that there were 2 lymph nodes which look to have some cancer activity. Dr. Keller stated that the chemo should address them, they will most probably be removed when I have my surgery and then be hit with the radiation treatment after surgery. He said that I have been staged at a “Stage 2″. YAY!

The most common areas that breast cancer spreads is the brain, the liver and the bones. With a full year of incorrect treatment for a staph infection, I was Very Scared for a negative result. Seems I dodged a bullet, A Big Bullet, so I can sleep a little easier!! And I Will!!

I may have breast cancer now, but I will be a Survivor.

Cancer Glossary:

https://www.breastcancertreatmentcoach.com/glossary.html

Tags: PET Scan, PET/CT Scan, scan

Posted in Cancer, Dr. K. Keller, North Cypress Medical Center, Results, Tests | 5 Comments »

Tuesday, March 10th, 2009

PET Scan – March 10 2009

Went to take the PET Scan (Positron Emission Tomography) today. Technology is So Awesome!

Location:
North Cypress Medical Center
Imaging
21216 Northwest Freeway, Suite 130
Cypress, Texas 77429
832-912-3625

Due to my situation (no insurance), the cost was $700 – I got a discounted rate called “Fee for Service”. Is still a Lot of $$$ for me…

Getting this test done was pretty frustrating. The original appointment was for Friday March 06, but “the machine was down”, so it was rescheduled 3 times until the machine was actually up and running. Finally was set for Wednesday March 10 at 1pm. Mom and I were in the area a bit earlier, so we stopped by to see if they cold take me earlier, and they were able to. However, no one had called from the hospital to remind me NPO after midnight until the test. Good thing I hadn’t eaten/drunk anything after midnight, nor any breakfast. Geez.

I got started about 11:30am…

The prep for the procedure itself was relatively easy. I knew I’d be getting some type of injection of radioactive liquid (called “trace”), then wait about 40 or so minutes, then get the test. Nothing by mouth after midnight the evening before.

I sat in a medical chair and got the shot intravenously, then I was brought to a lead-lined room with a big recliner, a TV and a phone, and was to remain there for the duration to allow the trace to circulate through my body and get to where it needed to get to for the test. Was kinda nice to be able to watch TV in the middle of the day, didn’t use the phone though.< I got a nice warm hospital-type blanket to cover me, and bottled water to drink. I drank 3 bottles, so I was up a couple times to go to the bathroom!

When the time was up, we went to take the test. The machine is like a big tube – kinda sci-fi looking, so I was comfy with that. I’m not claustrophobic, so it didn’t bother me to be enclosed like it was. I think I might have even fallen asleep too.

Everyone was very nice.

Should know something early next week – I hope I get good results!!

(Results HERE)

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[View with PicLens]

Tags: PET Scan, PET/CT Scan, scan

Posted in Cancer, North Cypress Medical Center, Tests | 4 Comments »

Sunday, March 8th, 2009

Riptide

So much has happened in such a short time, and more to come…I feel like a small fish caught in a big wave, being tossed around without any control.

I’m scared, but grateful that Dr. Keller is on “My Team”, but also pretty mad that it came to this under his watch. Wondering how this happened. He’s supposed to be the “Specialist”… Anyway, he sure has stepped up to make sure I am being taken care of, so for that I am “grateful”.

Next week will bring a lot of changes. I’ll have the port implanted tomorrow morning, Hopefully the PET scan (IF the machine is fixed), the first chemo and Neulasta injection on Wednesday and Thursday. We’re Hoping that the PET scan comes back with some positive results.

I’m really scared.

Tags: Changes to come, Dr. K. Keller

Posted in Cancer, Coping, Dr. K. Keller, Tests, venting | No Comments »

Friday, March 6th, 2009