Monday (10/23). Waiting in line. I call to schedule an MRI. It needs to be 7-10 days after menstrual cycle. Hey, something good, I just had one (TMI? LOL), so let’s get this thing going. Thankfully, I don’t have to wait a few weeks. I was initially scheduled for Monday, but got wrapped up in that being too far outside of the 7-10 day window, so I called them back and got it rescheduled for Friday.
I also got a referral today to the new (requested) oncology office, so I called to schedule that visit. I was initially scheduled to see one doctor about two weeks out, and scheduler said she’d check on specific doc requested to see if I could see him. The scheduler called me back shortly (I think a couple of days later), and scheduled me with my first choice oncologist for Tuesday. Yes! It felt good to name drop and get results.
Tuesday. Geez, this is a long line. Ok, this anxiety is out of control. Time to call and request anti-anxiety meds. I picked them up as soon as they were ready!
Wednesday. Crickets. Waiting.
Thursday. Twiddling my thumbs. Waiting.
Friday. At the front of the line. MRI appointment. My stepdaughter took me because Grey wasn’t going to make it home in time. That darn I-5 traffic from Seattle has gotten to be a nightmare. I am so thankful for my kid and her support. Anti-anxiety meds. Check. The technician was great and joked with me. I was loopy on lorezapam, so I don’t even remember what we joked about, but that his calm demeanor helped put me at ease. He is definitely in the right job as is most everyone I have encountered so far. So thankful for these people.
MORE TMI coming up! 😉 First the tech gave me a shot of saline and left the soft needle in my arm. Then you have to lie face down with your boobs in these boxes, just hanging there. It seems sort of like a futuristic massage table where they slide you into the tube for your virtual massage, except that your arms are over your head like you’re getting ready to fly. An MRI machine is a huge tube where you lie on the table, propped up in some sort fashion, depending on what body part they are imaging, and get wheeled into the tube. For those who are claustrophobic, this can be super stressful. I already had my lorezapam, so I’m good. This sort of imaging takes a while and you have to be pretty still while the machine is going so the images are clear. He first took images without contrast. In order to see a tumor, the borders and other cancerous cells in the area, they need some sort of contrasting dye. The next step is to inject the dye. I’m already plugged in and ready for contrast. Then you have to be still for a few more images with contrast. That appointment was easy peasy!
Tuesday / Halloween. On the ride. Get in, buckle up and hold on! It’s going to be a bumpy ride. Grey and I head to the oncology appointment. I cried in the lobby while trying to fill out the paperwork. I am seeing MY oncologist. I really have cancer. Fuck me! This is real.
What I heard and remembered compared to what was actually in my notes were a bit different.
In my notes: I have IDC-2, which means invasive ductal carcinoma, stage 2. The preliminary stage of 2 is based on size of tumor, 3.6 x 2.6 x 2.4. When doing the lumpectomy, the surgeon will need to make sure to have clear margins, meaning they need to take out extra tissue around the tumor. They want the tissue surrounding the tumor to be cancer free. Otherwise, they have to go back in and take more. The surgeon will also need a sentinel node (lymph node)biopsy and may remove some smaller lymph nodes. Even though from all imaging, the lymph nodes appear to be clear, but need to make sure. It is possible ‘probable’ we may need to do chemotherapy before surgery, ‘but need more info’. Hmm, does this mean that we probably need chemo first or surgery first? Although this was said, I blocked chemo first out of my mind. Probably or not. Whatever. I heard surgery first! We also will do radiation with lumpectomy in order to kill off any stray cancer cells in the area. Damn cancer anyway. Getting in the way of my life!
Hormones. From the biopsy, they test 3 receptors. Estrogen, progesterone, and something called HERS2. I am not totally clear on this piece of info, except that positives here actually are a good thing and does mean better prognosis for treatment. It also means that we will need an estrogen blocker post treatment in order to reduce the risk of new breast cancer showing up.
Chemo. There are three general treatment protocols for breast cancer. One is T.C., or a texotype and cytozine. This would last 3 months. A second is AC-T, which is an athromycin, a cytoxine and a texol. This lasts 4-5 months, and has the best efficacy, but is more toxic and lasts longer. A third one is CMF (don’t know what this one is), but it is old / obsolete, though at least one doc in Seattle still uses it. The type of chemotherapy is also dependent on the tumor dissection and testing. When they remove a tumor, they work to determine the oncotype / complete diagnostics from 21 genes. Again, I don’t completely understand these pieces, but if some of the numbers / info here are low, that means no chemo. Let’s hope for low. If it is medium, it depends. If it is high – chemo for sure. What I hear there may be a chance I won’t need chemo! My interpretation was that choice #1 was the ‘bad chemo’ and that choice #2 was the ‘worse chemo’.
BRCA / Gene mutation. Doc would like for me to do genetic testing because most cases of cancer like mine is in women over 50, especially over 55. If the test is positive, it means I am at greater risk for ovarian cancer and at a 30% higher risk of breast cancer. Some women who test positive for this opt for a double mastectomy. Most insurance companies will pay for genetic testing.
Proliferative. The higher bracket of breast cancer means that the tumor is growing faster. Mine is in a higher bracket, which also means that it is more aggressive. I heard this, and even wrote it down, but again, I am going for the no chemo route, so I hear and remember, blah, blah, blah.
SCCA. Seattle Cancer Care Alliance. A few people have recommended I get a 2nd opinion from them as they are a top research and cancer treatment facility in the country. I can get my treatment plan through them, and still have treatment here at home. I asked my oncologist for a second opinion from them and if he would make that referral.
After the appointment, I reflected on how comfortable and secure I felt in his care. He answered all of Grey and my questions, was great at explaining everything, and had an exceptional and caring bedside manner. Even though I felt better after the visit, I came home sad and scared. This is so real, and the tumor is huge. My little homemade clay model (see pic) is not even big enough. I need more pink clay. I am sure part of me heard everything I wrote down, even though my conscious mind and memory blocked out pieces. I don’t feel good about anything, so I went for a walk.
Wednesday. 10:56am. Call from surgeon. Hill, hard left, then triple loop I didn’t know was there. He presented my case to the tumor board this morning. The tumor is ‘extensive’ and ‘more than standard imaging suggested.’ It does not indicate disease elsewhere (i.e. in lymph nodes, where goes first, so should not be elsewhere in body either) or in the other breast. (So, what you are saying is that the female breast – i.e. the right one – is great. It is the male breast – i.e. the left one – that is causing me problems. Hmmm…). The size of the tumor is ‘borderline for breast conservation.’ If we do lumpectomy and are not able to get positive margins, especially because of aggressive and higher grade of cancer, it will be necessary to talk mastectomy. It is clear with my ‘young age and pathology that chemo will be part of treatment’. One approach is neoadjunctive therapy, which means chemo first and surgery second. The goal here is for the chemo to shrink the tumor so we are more likely to succeed with breast conservation. He also recommended genetic testing for more info, and we discussed more about getting opinions from the Seattle Cancer Care Alliance. They may even have the potential to do mastectomy and reconstruction in one procedure. He recommended getting their opinion ‘sooner rather than later’ and again reiterated that it was ‘clear that chemo is part of treatment’ and that if we were to do the neoadjunctive approach that we needed to start that ASAP! As soon as I had a decision made, I should call and schedule the outpatient procedure for the port. A port is a device they implant into your body, sort of like one stop shopping. Many chemotherapy drugs are quite corrosive to the skin and providers prefer to use ports in order to get the drugs directly into the veins.
This phone call rocked my world to the core. Chemo then surgery or mastectomy. I had not even considered a mastectomy to this point. Hey, I like my boobs! They are mine. I already got rid of some of them back in ’08 when I had a reduction. Guess I didn’t get rid of the right parts.
So, of course, I call my oncologist right away and left a message. And I called SCCA – they did not have my referral yet. Remember, I walked away sure that I was going to have surgery first and had blocked out chemo, thinking (hoping) it was going to be either unnecessary or I’d only have to go through the ‘bad’ chemo. He called me back early afternoon. He had spoken with the surgeon and agreed with the tumor board interpretation that it would be difficult to get clear margins for positive results on breast conservation due to size of the tumor, and that chemo should be first in order to shrink the tumor. He said he would send a message to SCCA asking them to contact me, and if I had not heard back by tomorrow, to call him back.
Thursday. Another hill. Genetic testing called to schedule that appointment. It would be two weeks out, on Nov. 14, then take two to three weeks beyond that for the results. GEEZ! So I called the SCCA. She directed me to the breast cancer area and gave me the direct fax to them as sometimes referrals get mired in the huge system they work within. I called and left message with oncologist regarding that info.
Friday. Clunk. Clunk. Clunk. Climbing another hill. I’m not letting up! I’m writing down all of my Qs for SCCA and impatiently waiting for them to call! So, I call them back. Nope, don’t have referral yet. UGH. I finally think to ask… Once you get the referral, how long will it take to schedule an appointment? We are three weeks out with new patient appointments and they prefer to have the results of the genetic testing for a more comprehensive picture. Fuck that!
Coming into the station. Ok. My mind is made up. I’m tired of waiting and want to get this over and done with so I can be on the other side. I generally like roller coasters, but this rickety ride is no fun at all. I am ready to get off, and I have really not even started. I thought I was getting off the ride, but it is just beginning. Be ready for more bumps, twists, turns, loops at any time. This is a uniquely constructed ride made just for you.
The Tumor (as best as I could mold through this insanity):
Current update: I had my second round of Taxol on Tuesday. Last week with the first round, Friday was the day that took me down to the couch with fatigue. I had horrible insomnia that first night, and am bit more tired earlier than last week, but doing okay for the most part. NO NAUSEA!!! YEAH!!!!
Sunshine in April 
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