The Finishing Touches

We had the appointment with the Medical Oncologist (Dr. Zaiden) yesterday. He informed us that the particular cancer that my mom has is called Triple Negative Breast Cancer (TNBC).

Most breast cancers (about 80-85%) are fed by either estrogen, progesterone, or the protein HER2. TNBC is not fed by any of these thins. More than likely it is caused by the BRCA-1 gene being mutated, which means that it is more than likely inherited. This makes it a harder cancer to treat because there are fewer treatments options.

As far as we know, it has not metastasized out into the body, although it is in the lymph nodes. We are waiting to hear back from the oncology office with an appointment for an abdominal CT scan to check for metastasis. We are also waiting for an appointment for an ultrasound of the heart to check for structural defects and the overall health of the heart, since the chemo can potentially caused weaken heart muscles. She is going today to have a ton of blood work done to check her liver and kidney functions, since the chemo is filtered through the kidneys and cleared by the liver.

Once all of this is done, she will start on the chemo. The regimen that she will be put on is called TAC (taxotere, adriamycin, and cytoxan).

The taxotere slows or stops the cell division, or keeps enzymes from making the proteins the cells need in order to grow. The adriamycin both blocks DNA production in the cells, and also inhibits the enzymes responsible for repairing DNA. The cytoxan stops cancer cells from replicating.

She will need to be closely monitored, more so than a "normal" chemo patient, due to her being on Coumadin and the clotting factor that she has. Chemo lowers platelets, making you more prone to bleeding (which the Coumadin does as well), lowers white blood cells, making you more prone to infection, and lowers red blood cells which makes you more prone to anemia.

All of that combined with the fact that she can not have IVs in her right arm due to the reconstruction surgery that she had a few years ago and the fact that her veins in her left arm are really bad, she will more than likely end up with a port-a-cath inserted under the skin just below her collarbone.

After chemo is done, which she will get once every 3 weeks for 6 cycles, she will have surgery and then radiation for 6.5 weeks.

There is an 80% chance that after 2 or 3 cycles of chemo that the tumor will disappear completely. This won't mean that she can avoid surgery and radiation though. it will all still be done since all it takes for the cancer to come back is one single cell left behind.

The chance of recurrence and distant metastasis is higher with this type of cancer, so everything will be done to prevent that as much as possible. This cancer is also pretty rare in older white women, mainly being diagnosed in African American women in their 30s and 40s.

Details

The appointment with the Radiation Oncologist lasted for 2 hours. An incredible amount of details were discussed at this appointment. It was almost mind-boggling really. Here is a quick rundown of those details.

As far as radiation goes, she will be getting conventional radiation. It will be the last step in this long process.

We also have a tentative game plan. After the appointment next Tuesday with the Medical Oncologist, this game plan will have the "finishing touches" added and everything can begin.

The plan is that she will get chemotherapy, most likely for 16 weeks. After the chemo will come surgery. What type of surgery it is will depend on how well the tumor responds to the chemo and how much it shrinks. Then, after the surgery, she will receive radiation therapy. This will be 6.5 weeks of daily, Monday through Friday treatments. Each treatment will last approximately 20 minutes.

The Radiation Oncologist

Surprise!!! We have an appointment to see the Radiation Oncologist (Dr. Xu) tomorrow at 12:30. We were not aware that she would be seeing this doctor, at least not for a while. We will be discussing the treatment options, one of which includes Proton therapy. I will go into more detail about what that is once we have a treatment plan in place.

The New Mammogram Guidelines Proposed by the U.S.Task Force Are Horrible!!!

The American Cancer Society recommends the following (for women of average risk for breast cancer):

*Yearly mammograms starting at age 40 and continuing as long as a woman is in good health.

The U.S. Preventive Services Task Force has now decided that women should not begin having mammograms until the age of 50, if they are at an average risk, and that it should be every 2 years. They also feel that self breast exams have no benefit and recommend that doctors stop teaching this technique to patients.

This task force has no authority to enforce these recommendations, but many doctors look to them for reviews on the effectiveness of screening tests and preventive care.

The American Cancer Society says that the number of women diagnosed with breast cancer in their 40s account for 17% of all breast cancer deaths. There is an estimate that this number will go up by as much as 3%, to a total of 20% of all breast cancer deaths. Think of the number of women that would be saved by early detection by beginning mammograms at the ACS recommended age of 40 and not 50 like the Task Force recommends.

Starting mammograms at a later age will result in the finding of cancers that are in later stages, decreasing the survival rate.

Right now as it stands with the ACS guidelines, an estimated 40,170 women will die in 2009 from breast cancer. A whooping estimated 192,370 new cases of invasive breast cancer and 62,280 cases of non-invasive breast cancer will be diagnosed in 2009.

Does the Task Force really feel that these horrendous numbers going up is okay???

This makes me very sad.

The Medical Oncologist

We finally have an appointment to see the medical oncologist (Dr. Zaiden) on Tuesday November 24th at 9:20am. This appointment is to discuss adjuvant therapy, using chemotherapy.

"Adjuvant therapy is treatment given before or after cancer surgery to increase the chances of a cure. It destroys microscopic areas of remaining cancer. Adjuvant therapy may include chemotherapy, radiation therapy, hormonal therapy, or a combination of these treatments." (http://cancer.sutterhealth.org/information/breastcancer.html)

Not What We Were Thinking

We went to see the surgeon (Dr. Kilkenny) today. He wants to send us to see a medical oncologist, which is a doctor that uses chemotherapy to treat cancer. He wants us to discuss the possibility of using chemo to try and shrink the tumor and possibly kill the cancer cells in the lymph nodes.

Using chemo before surgery will do one of a few things...

1. It will shrink the tumor none and do nothing to the cancer in the lymph.

2. It will shrink the tumor some and do nothing to the cancer in the lymph.

3. It will shrink the tumor a lot and do nothing to the cancer in the lymph.

4. It will shrink the tumor none and kill the cancer in the lymph.

5. It will shrink the tumor some and kill the cancer in the lymph.

6. It will shrink the tumor a lot and kill the cancer in the lymph.

If #1 happens, the surgeon will have to do a *full mastectomy and take out all the lymph nodes.

If #2 happens, the surgeon will do a **partial mastectomy and take out all the lymph nodes.

If #3 happens, the surgeon will do a ***lumpectomy and take out all of the lymph nodes.

If #4 happens, the surgeon will have to do a full mastectomy and leave the lymph nodes alone.

If #5 happens, the surgeon will do a partial mastectomy and leave the lymph nodes alone.

If #6 happens, the surgeon will do a lumpectomy and leave the lymph nodes alone.

Obviously, we hope that if she goes through chemo first, that #6 is what ends up happening. Though any of the situations #4-6 would be good. If she can get through surgery without having to take out the lymph nodes, that would be awesome. The drawback to #2,3,5 and 6 is that she would have to go through radiation after the surgery. With #4, she would do the chemo and have the surgery and NOT have radiation, but she would lose the entire breast. With #1, she would go through the chemo and have the surgery and NOT have radiation, but she would lose the lymph nodes.

The lymph system "is part of your immune system. It consists of a series of vessels which run along side your circulatory system (veins) and lymph nodes which are located around major organs and in certain tissue (under your arm for instance). The lymph system helps to filter out dead cells, protein and waste products in your veins. It also plays a role in mobilizing your immune system to fight off an infection." (http://cancer.sutterhealth.org/information/index.html)

Losing the lymph nodes put her at risk for a condition called lymphedema. Lymphedema is "the collection of protein-rich lymph fluid in the tissues of the hand, arm and/or chest wall on the side of the breast surgery. Lymphedema causes painless swelling of the hand, arm and/or chest. The condition occurs when the normal lymphatic drainage in the chest and arm are injured during surgery and/or radiation therapy." (http://cancer.sutterhealth.org/information/index.html )

Lymphedema is usually not painful, though the arm does get red and swollen. It can be a chronic condition that she would have to deal with forever, off and on over the years. It is not a dangerous condition, just bothersome as it can occur due to overuse of that arm, infection, a bug bite on that arm, a cut or scrape to that arm, or any other type of injury that causes a build up of excess fluids. It is something that can treated with massage that manually drains the lymph fluid, wearing custom-fitted compression sleeves or garments with or without pumps attached, and with antibiotics.

* full mastectomy: surgery where all of the breast tissue and nipple is removed.

** partial mastectomy: surgery where the cancerous tissue and a generous margin of normal tissue is removed (more breast tissue is removed with this than with a lumpectomy)

*** lumpectomy: surgery where the cancerous tissue and some surrounding normal tissue is removed.

I think I covered it all...

Ugh...My Nerves are Shot

I have been so incredibly stressed out today. Let me tell you why...

On Friday, I called Amanda at Dr. Porcase's office to check in with her regarding the progress of getting the biopsy pathology slides sent to Shands. I never heard back from her Friday.

She called me today and told me that she had yet to hear from Connie (breast health coordinator at Shands) about where to have the lab send the slides. She wanted to know if I knew where they were supposed to go. Of course, I had no idea. So she suggested that we both call and leave messages for Connie and hope that we got called back in time for the slides to be overnighted to Shands.

A little while later, Amanda called me back to tell me that Connie had returned her call and given her the address for the slides. Amanda was then able to fax over the request form to the lab. We are only hoping that it got there in time for the slides to be shipped out so that they are there for the surgeon tomorrow.

I am also pretty nervous about the appointment tomorrow. I am afraid that my mom is going to go in there and refuse to hear anything that he has to say. She is that stubborn sometimes. I can see her doing that, especially with her negativity lately.

What I Did This Weekend...(I worked hard)

I spent a good portion of the weekend putting together a notebook to put all of my mom's medical information in and keep it organized. Inside there are dividers for:

A Treatment Log (where I will keep track of any and all treatments that she receives)

Medical Team Directory (where I will keep contact in for for any and all doctors, etc.)

Personal Info Directory (where I will keep an ongoing copy of her medical records)

Insurance Info (where I have a copy of her benefits plan book, I will also keep any statements, EOBs and bills that she receives)

Reports (where I will keep copies of all reports from any tests that are done)

Meds (where I will keep track of all meds that she is given and any details on when and how to take them)

Calendar (I have printed out a monthly calendar for easy at-a-glance knowledge of what is upcoming and I also have a weekly calendar as well for more detailed information)

Follow Up (where I will keep info regarding check ups, any tests to be done at check ups and a follow up schedule)

Maintaining Health (where I will keep any info or hints on staying well before, during and after treatments, dietary suggestions and any exercise guidelines)

Potential Problems (where I will keep info on any "problem" side effects to any treatments)

Community Resources (where I will keep info on places around town that can offer help, info, etc to us regarding her care)

Questions (this is where I will jot down any questions that we have along the way so that they are all together and I can keep track with them)

Prescription Drug Coverage (I have copied her insurance's drug plan so that we are well aware of whether or not any drugs that she is given are covered or not)

Additional Info (this is where I have put a copy of the American Cancer Society's Breast Cancer Guidebook, I will also include other info along the way that I find helpful or resourceful)

Finally Something Worked Out Right

The plan for today was to take my mom to Memorial to get copies of her mammogram films. Before I left the house to drive all the way into town, I called over to Memorial. I spoke with the lady at the front desk in the Imaging Department. She transferred me to the Mammography File Room (why I was not transferred to them in the first place on Wednesday when I called, I could not tell you...)

The message in the Mammo file room told me to leave a detailed message, stating the patient's name, birth date and a telephone number where they can be reached. It also told me that it would take 48 hours for all files to be copied and that someone would call to let you know that the films were ready for pick up.

I left all of the requested information. And then called my mom to tell her that we would not be going to Memorial today and explained to her what the message had said. She then tells me that she filled out the paperwork to request the copies on Wednesday when we were there. WHAT??? Seriously? Why did she not tell me this? I have been stressing out all week trying to figure out how we were going to get these films and here she had already done the paperwork...

So, I called back over to Memorial and again spoke to lady at the front desk. I explained to her what was going on, that my mom's memory is not the best and that I had a sick kiddo that I would like to avoid dragging all over town if I could. She very kindly transferred me to the Mammography File Room Manager (Joanne). I left a message that explained the situation and asked that someone please call me to let me know exactly what was going on with these films.

While I was waiting to hear back from Joanne, my cell phone rang. It was Connie, from Shands. She was checking in to see where we stood in getting the films. I explained to her what was going on and she then tells me this: "If you can get your hands on those films today, let me know ASAP. Dr. Kilkenny (the surgeon) wants to see your mom as soon as yesterday. He's willing to schedule an extra appointment on Tuesday to get her in."

Then while I am getting off the phone with Connie, my house phone rings. It's Joanne! She says that the films are indeed ready for pick up and that they were open until 4:30. I immediately called Connie back. She was still at her desk (she is a very busy woman and is NEVER at her desk) and answered. I told her that the films were ready and as good as ours.

Long story short (HaHaHa, yeah right!)....we see the surgeon on Tuesday November 10th at 1pm!!!

Things are finally going right and moving along. After the week that I have had with all of this back and forth crapola and a sick, pukey and poopy kiddo, I feel like I can FINALLY relax some and enjoy the weekend. We are going to the Fair and to the Air and Sea Spectacular.

One Step Forward, Two Steps Back

If you recall the phone conversation that I had on Tuesday afternoon with Connie at Shands, you will remember that she requested that we go to Memorial and get a copy of the mammogram films to bring with us when we finally see the surgeon.

Well, yesterday morning, after taking my mom to her doctor to get her Coumadin levels drawn, I took her to Memorial to pick up the films. Please note that I had called over there to the Imaging department prior to leaving the house to ensure that we did not need a request form from the doctor's office. I was told that we did NOT need a request form , that the films belong to the patient and they have the right to request copies at any time. Great.

We get to Memorial and my mom goes inside. I stay out in the car with Ainsley, who was sick and sleeping. My mom is inside for about 30 minutes and comes outside empty-handed. She handed me a slip of paper that stated that her doctor MUST call at least 48 hours prior to her coming to pick them up and that they must fax over a release form.

I was pretty agitated because I had called them specifically for this reason. To avoid getting over there and finding out that we needed a doctor's release. Here I was with my very sick, pukey and poopy kiddo, sleeping in the car. I needed to get her home so that she could rest in a bed. So, I called the doctor's office and left a message requesting that someone call over to Memorial and do what had to be done so that they would give us the dang films.

To kill time while I waited for someone to call me back and tell me that Memorial would give the films to us, I drove across the street to the Quest Lab, to drop off a stool sample for Ainsley. That took a whooping 35 minutes to drop off, as the woman made me sign in and wait to drop off some poop. But that is another story.

I then drove over to Walgreen's to get some ginger ale, some pedialyte, some baby tylenol and motrin, some electrolyte water and a few other things for the sick baby. I came out and my mom went in to pick up a few things. By now we had been gone from Memorial for over an hour and I still had not heard back from the doctor's office. So I made the decision to take my mom home and get Ainsley back home and get some fluids in her.

I got a call back later that afternoon, at 4:45. The doctor's office told me that they did NOT have to call Memorial to get them to release the films to us. Ugh.

So, tomorrow, the plan is to go back to Memorial and give them what for...at least until they give up the dang films. Wish me luck.

One Step Closer

I just got off the phone, after an hour long conversation, with the Breast Health Coordinator (Connie) at Shands Jacksonville. She was out of the office Friday and Monday. She had clinic half of the day today and will be there again all day tomorrow.

She got the phone call from Dr. Porcase's office on Thursday and returned the call stating that she needed more information. No one ever called her back with that information.

So......tomorrow when I take my mom in to the doctor to get her Coumadin level drawn, we need to sign a release form giving Dr. Porcase permission to release the breast biopsy pathology slides to Shands. Then we need to get them to fax the release form to Shands while we are there, so that we know that it was done and went through.

Then we have to go to the Healthcare Plaza where she had the mammogram and get a copy of the films.

When Connie comes in on Thursday, the release form should be on her desk. Once she has it in her hands, she can get the ball rolling on getting my mom scheduled to see the surgeon. She told me that she is making my mom top priority due to the size of the tumor, so we should get in pretty soon to see the surgeon.

That is where we sit right now. One step closer than we were this morning.

Hurry Up and Wait...

I have no patience when it comes to waiting for something like this. When we were at my mom's doctor last Monday and we got the confirmed diagnosis, we were told that we would be called by the end of the week with an appointment to see the surgeon.

I called 4 times on Thursday and Friday, leaving messages each time. No one called me back either day. The phone finally rang this morning. It was Amanda, the referral coordinator at my mom's doctor's office.

She told me that the reason I hadn't heard from anyone was because the surgeon that Dr. Porcase (my mom's doctor) wanted her to see is not contracted with her insurance. The only surgeons and hospital that are contracted with her insurance is Shands.

While some might have issues with Shands, I am very pleased that that is where this will all be taken care of. It is a wonderful hospital.

The drawback is that everything takes FOREVER!!!

We are now waiting to hear back from the Breast Health Coordinator there at Shands in the Breast Health Center. She is out of the office until tomorrow afternoon. She is apparently the only person there that can schedule appointments with the surgeons.

The longer we have to wait to see the surgeon means the longer it is going to be before the surgery gets done and my mom is on the road to recovery.

ARGH!!!

It Helps to Have A Good Friend

My best friend Beth has an almost uncanny 6th sense. She always seems in some way or another to know when I am feeling down or have hit a low point.

Every single time, since this all started with my mom and the doctor first muttered the words "breast cancer", I need someone to talk to, she ALWAYS pops up in one way or another. Whether it be a phone call (she lives in Atlanta), a text message or an email, she is always there to pull me through whatever is going on at the moment.

At my mom's first appointment, the one that started all of this, while I was waiting in the hallway for my mom to get some blood work drawn, I sent Beth a text message saying that the doctor thought my mom had breast cancer. Almost as soon as the text went through, there was Beth calling me.

The morning of my mom's 7am mammogram. Nerves were on edge. At 6:30 that morning, as we were driving to the hospital, my phone rang. It was Beth, calling to let us know that she was thinking about us and wanting me to call as soon as it was over.

Beth doesn't know that she has this sense. At least, I haven't told her. Maybe she does know it. Maybe that is why she pops up right when I need someone to talk to. Whether she knows it or not doesn't matter. What matters is that she is there. When it feels like there is not another person around that cares, there she is.

Thank you, Beth. You will never know what it means to me to have someone that cares so very much about what is going on with my mom.

It really does help to have a good friend.