I knew that today was going to be a long day, but I had no idea just how long! We left the house just before 9 this morning and did not get home until about 8 this evening. I am now on information overload!
The day started out with an appointment with Dr. McMasters. He checked everything out and said that everything was looking good. He then went over my pathology report with me, Nick, and Christine. If you remember reading back in my first couple of posts in this blog, I had been told how lucky I was because this type of cancer does not always show up on mammogram. I was in for a surprise when he went over my reports because I had not one, but TWO tumors. The first measured 2.4 cm across and the second measured 2.2 cm., both of which were invasive. The larger tumor is grade II and the smaller is grade III. In addition to that, I also had a small area of lobular carcinoma in situ which is not considered an actual cancer yet, but is precancerous. That had me flustered for a minute and unable to think clearly, so thankfully Nick and Christine took over with the questions. Below is a picture that Christine took of me waiting for Dr. McMasters to come in to the room to see us.
After leaving Dr. McMasters office we headed over to see Dr. Little, my reconstruction surgeon, and there I had saline added to my expanders. Once that part was over, which was pretty easy, came the hard part. Last week I had two drains removed and they were a bit painful, but I was not expecting anything like what it felt like today. The last two drains to come out had larger tubing, and they had been in longer. Because of this, the sutures were more painful to remove, and the process of actually pulling the drains out had me actually sobbing in pain. Nick help my hand through it all. After the first was completed it dawned on me that I still had another one to go. I literally got sick to my stomach at the thought. Nick moved to my other side, held my hand and told me I could squeeze as hard as I needed to, and told me that I was doing a great job. The second drain removal was again very painful but it was such a relief to have it over with. Below is a picture that Christine took of Nick holding my hand and rubbing my leg to comfort me as my second drain was being removed:
We now had to head back across town to Brown Cancer Center (for the second time today) to meet with Dr. Beth Riley who would be my chemo oncologist. That appointment was for 2:30 and we did not leave her office until after 5. This was not spent sitting in the waiting room. This time was spent with the doctor and her nurse! It was here that I again that I was told that my cancer staging is IIb. Dr. Riley said that she would be meeting with Dr. McMasters on Thursday to discuss whether I need to have additional lymph nodes removed or if I just go ahead and start my chemo. She said that they weight the risks and benefits of both options and would get back with me. She went on to say that if they went in to remove more lymph nodes and there were cancer cells found in any additional lymph nodes that it would bump me up to stage III. I honestly don’t know if I can emotionally handle the thought of that.
Some other things that we learned today: I already knew that my cancer was estrogen and progesterone receptive positive, and I was originally told HER2 negative. However, Dr. Riley told us that it wasn’t as simple as that. Apparently HER2 testing has a grey area where it isn’t actually negative, but not positive at the same time. This is where I am. And because of this, I qualify for a chemotherapy drug trial. I will get to that more later in the post. I was also told that my Ki-67 score was high which is considered “unfavorable” and means a higher chance of recurrence.
As for my treatment, this is what it looks like as of now:
2 months of Adriamycin and Cytoxin every two weeks (total of 4 treatments with this drug combo) Followed by an injection of neulasta after each treatment (24-48 hours after) This will be followed by:
Taxol given either every 2 weeks for 4 months OR given weekly for 3 months
Possible side effects include:
1. This one Dr. Riley said is a given: I will lose my hair. This will include eye brows and eyelashes.
2. Pain where medication was injected
4. Severe headaches
5. Low blood counts (both red and white blood cells along with platelets)
6. mouth sores
7. lose of fertility (Since I have already had a hysterectomy, I don’t have to worry about this one!)
8. Poor appetite (I can stand to lose a few pounds) Hey…I am trying to stay positive, ya know!!
9. Pain in joints and muscles
10. Neuropathy (numbness and tingling in the hands and feet)
11. Hypersensitivity to sun
12. Increase risk of infection due to low white blood cell counts
13. Increased risk of anemia and possibility of requiring a blood transfusion due to low red blood cells (this is what the injection of neulasta takes care of)
14. Altered taste
These are the more common side effects. I will not go into the less common ones.
On top of the above treatment regime, Dr. Riley informed us that because of the grey area where my HER2 score fell, I qualify for a drug trial. This trial would place me on the the chemo drug Herceptin to be taken every three weeks for a year. It is for women with breast cancer who are node-positive and HER2-low (that grey area between negative and positive). I qualify for this trial. They have 5 slots available for this trial at brown Cancer Center and 3,260 slots nation-wide. Apparently the purpose of the trial is to see if adding a targeted therapy (Herceptin) to standard treatment with chemotherapy in women with HER2-low will lower the chances of the breast cancer returning. This drug will need to be taken for a YEAR. Nick and I were sent home with a huge amount of reading matterial about the drug trial so we can read the information and let them know at my next appointment on the 27th if we are interested in joining.
As for additional appointments coming up, I have to go back to Louisville on Friday of this week for an echo of my heart and a chest x-ray at U of L Hospital. Then Nick and I will head over to U of L Outpatient center for an appointment with Dr. Little so he can add another fill in my expanders. I MAY also have my port inserted that day. If it is not inserted on Friday, it will be done sometime next week because Dr. Riley wants my chemo started by the first week in October.
On Tuesday, Sept. 25th I am attending a class at Brown Cancer Center that deals with “chemo brain fog” and my mom will be taking me to that one and staying with me for it.
September 27th (Thursday) I will be seeing Dr. Riley again. Nick and my mom will both be going with me to that appointment. We will be discussing whether or not I will need additional lymph nodes removed and I will be letting her know what mine and Nick’s decision is for the drug trial. Then we will be meeting with a oncology nurse who who will give the 3 of us a class on chemo. We will also get a tour of the chemo treatment room and I will get to meet the nurses who will be caring for me during my treatments.
Following week, we will be starting chemo.
Can you say OVERWHELMED????
Again, I have to say a few words about Nick. When he noticed how painful the drain removal was for me, he was immediately by my side, holding my hand, and telling me it was going to be OK. Cousin Christine had to remind me several times to breath because when I hurt badly I forget to breathe..she is my lifesaver!!! LOL
During my appointment with Dr. Riley, I got a little upset at several points through out the the meeting. As soon as Nick saw my eyes start to water, he was immediately out of his chair and was holding my hand and wiping my tears. He rubbed my back and wiped my tears all while telling me how much he loved me.
This is something that I pray to God that my children never have to go through.