I have started this post several times, never quite knowing what to include.
I am planning to try to post here so everyone can get our most current news. Hopefully that will help me not forget to send somone an email...
We are slowly getting some pieces in place. We thought we had them, and then had everything unravel last week because of some stress with insurance....
Here is where we are as of last Thursday:
1) Preston & I met with the medical oncologist on Thursday AM. She is wonderful and so is her staff. They were very attentive to our questions and made sure we didnt leave the office before we had all the info that we needed. We agreed that pre-surgical chemo will be best for me, then surgery, then possible radiation, and long term hormone treatments. I had labs done last week as well to specifically look at my iron and Vit D levels again. Dont have those back as of yet.
2) BOTH pathology reports came back negative. That takes away 2 big things we wont have to worry about at all. That is a huge blessing and something the surgeon is VERY pleased about.
3) MRI results came back with not good news - cancer has spread outside the main tumor area within left side. There were also cancer nodules detected in the right side as well. We knew this could potentially be a concern as the type of cancer this is. The MRI results will give better documentation for other full body scan that has been requested. They need to make sure it hasnt spread anywhere else.
4) I am scheduled this Friday for a focused ultrasound on both sides, and a small pre-surgical procedure that will help them pinpoint, track and measure the main tumor during chemo. Depending on what the ultrasound shows, they may also do a 2nd biopsy on the right side while I am there in the office.
5) Because we are still waiting for several tests and the surgical procedure for the port to be put in, my 1st chemo treatment is going to be pushed out to next weekend (Nov 18). Most likely Thurs will be a pre-lim dr appt and labs, chemo on Fri, secondary injection on Sat. We have been told that I WILL lose all of my hair between the 1st and 2nd treatment (2 weeks). Right now, I am thinking that we are going to have our hair shaving party on the 18th or 19th. We could potentially wait until Thanxgiving weekend, but expect that I may be too sick to handle the haircut by then....so anyone who wants in on the party can join us :) If you do, we would love for you to send picts so we can post them here :)
We are hoping to hear from the oncology office in the next day or two and that we will be able to put the other tests (PETscan, echocardiogram) and the port procedure in place before next weekend. As soon as we know more I will post it here.
We are very grateful to all of those who are keeping us in their prayers. Knowing that you love and care about our family means so much.
5 comments:
Are you all going bald? What were the test that came back neg?
Genetic test came back negative; a positive would have predicted an 80% of getting BC again, and would have forced us into a double mastectomy now. (That might still happen anyway)
Other test was something to do with a specific protein on the cancer cells themselves. I think that positive / negative has less effect on the total treatment, but might have affected which drugs to use. Might also change the long-term hormone therapies that are used.
Bald ... not "all." Rory will shave me and I will shave her. Ceana's friend John is going bald too, at least partially to gain an advantage for the upcoming swim season. :+)
So, Rory, I don't know if I've missed a post or what. If so, I hope you'll direct me to the right place, but this was all very out of the blue to me who doesn't see you very often. Have you shared the symptoms and what led to the diagnosis. My grandmother had breast cancer, so I'm at a greater risk for it too. Just wondering what gave you the first signs that you might be dealing with this. Thanks! Love, Julie
Rory is very sensitive to folds in the bedsheets or blankets. One night she tried to smooth out a crease, but then realized that wasn't what she felt at all. That's when she found the lump.
Apparently "rolling over in bed" is a very typical way that tumors are discovered.
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