So What Happens Next

Initial Pathology Results - Dr. Lindfield

Monday March 18th was the day that I got to go in and see Dr. Lindfield, my breast surgeon, and find out what they found. If you recall, part of my mastectomy was a Sentinel Lymph Node biopsy. This was done to determine if the cancer had spread into my lymphatic system. If it had, there was a good chance for recurrence of the breast cancer or for the cancer to show up in a different part of my body.

I brought my entertainment entourage with me again to Dr. Lindfields office.  I didn't meet with Dr. Lindfield, instead I met with her associate who I just learned was in surgery with her. I never met him before, but my family did because he was the one who came out to tell them that the mastectomy portion of the first surgery was completed.  He reviewed my results with us. He stated that on the right side, 17 lymph nodes were removed and 2 were found to be cancerous. On the left, 3 lymph nodes were removed and none were found to be cancerous. He said it was highly likely that I would have suffered some nerve pain on my right arm due to the number of lymph nodes that were removed (Duh) and that down the road, Lymphedema was a possibility. Lymphedema is the process of the arm swelling, sometimes permanently, well beyond its normal size. The purpose of the lymph nodes is to absorb and move bodily fluids. With 17 lymph nodes missing, my right arm's ability to push fluids out of the extremity and back into the main flow of my body would be severely compromised, so Lymphedema is something we will need to watch out for going forward. 

The doctor also said that since there were cancerous lymph nodes, I would probably need chemotherapy.  He said that even though most of my breast tissue was gone, there was still about 5% of it left and the chance for recurrence was high. Beyond that, I was going to need to meet with my oncologist (Dr. Dougherty) to find out more about chemo.  Good thing my appoinment with Dougherty was tomorrow.

Since I was going to need chemotherapy, I was going to need a mediport. A mediport is a catheter that is installed directly into your veinous system, usually below your collarbone, with a port visible to the outside. It is through this port that chemotherapy will be administered.  Dr Lindfield's office wanted to make an appointment right then to get the mediport installed into me. I like to think of it as my very own HDMI port! Unfortunately, putting in a mediport was a surgical procedure, one that I would need to be anesticized for, so I was going back to the operating room at ECMC.  The doctor had no idea when Dr. Dougherty would begin chemotherapy but wanted to get me on the schedule for the mediport anyway. So before I left the office, I was given an appointment date of next Tuesday, March 26th, to be back at ECMC at 6am sharp for surgery. I was told it would be a quick surgery though and I should expect to go in around 8am and be out by 9.  This would not be so bad.

The Treatment - Dr Dougherty

On Tuesday we saw Dr. Dougherty. We remembered the 3 hour wait we had to see him the first time, so as soon as we were shown to the patient room we geared up for the 2nd Doctors Office Olympics! Since we polluted the office with wet cotton balls last time we were there, this time we decided to keep it easier to clean up.  First event was the ring toss.  In order to win this event, you had to toss the surgical tape from across the room and have it ring a pen that your partner was holding. Your partner was allowed to help by moving the pen to optimal position... Even so, nobody was able to get a ringer. This event was much harder than it looked!

Me Attempting the ring toss

Cathy attempting the ring toss

Rory attempting the ring toss

Ring toss action shot!

Event 2 was the Shelf Toss. Using the surgical tape rolls again, the object of this game was to toss the roll of tape across the room and have it land on top of the paper towel dispenser without it falling off. This game proved to be loud since you would have to use the wall as a backboard for the tape, so we put my shirt on top of the paper towel dispenser to dull the sound. Rory had proven to be the champion at this event by sticking the landing not once but twice!

Cathy attempts the shelf toss while Rory supervises

Shelf Toss action shot

After not that long of a wait, Dr. Dougherty came in to see us. We had such a short wait, we only had time for 2 events! What Dougherty had to say was not that positive.  He gave us some conflicting information than what we got yesterday at Dr. Lindfield's.  He said 18 lymph nodes on the right were taken and 2 were cancerous (as opposed to the 17 that Lindfield told us about). In addition he said that 3 lymph nodes were taken on the left but 1 of them was cancerous (Dr. Lindfield said none were cancerous on the left). 

Even more, he said that the full biopsy that was conducted on the tumors themselves found that there was a second cancer on the left side that they didn't know about. The right side contained 2 tumors that were Invasive Ductile Carcinoma. The 2 tumors on the left side were Invasive Lobular Carcinoma.  The statistics of a woman between the ages of 35 and 44 getting breast cancer is 10%. I fell in there. The probability of a DIEP flap failure is 4%. I fell in there. Now the probability of getting 2 different types of breast cancer at the same time is I don't know, but I tell you, I felt pretty special. Given the statistics I was looking at, I was breaking some kind of mathematical record! There was just no way I WASN'T winning the PowerBall drawing this week! (Spoiler alert - somehow, I didn't win?)  So since yesterday I had learned that I had lymphatic filtration on the right AND the left side AND I had a second type of cancer. This meant chemotherapy for sure. In addition, Dr Dougherty was thinking of radiation on the lymphatic system. Grrr.

Dr. Dougherty told me that without chemotherapy, I had better than a coin flip chance of getting cancer again.  This is why I needed chemotherapy. When chemo was half done, he would do some blood work and decide if I needed radiation too.  If I did, he would do one month of radiation when chemo is over.  With chemotherapy, I have a less than 10% chance of recurrence. These are good odds. So I asked Dougherty how I will know if I am cured and he promptly answered "You will know you are cured when you die of something else".  "When will I know if I am cured" and again he said "you will find out that you are cured when you die of something else!"  We found this so funny that so help me God when I am on my death bed in my 80's dying of old age, I am going to call all my friends and say "Good news! I am cured of cancer!"  (Mark my words, I will do it!)

Dr. Dougherty reiterated that I would need a Mediport.  He said the Mediport was necessary because if they were to deliver chemotherapy through a needle into a vein in my arm, the vein would disintegrate and burn out.  Chemotherapy is that strong. So instead they want to deliver the chemo through a catheter that goes straight to my heart. Ummmm, that's not the logic I would have followed and frankly it scared the shit out of me, but hey, these guys have been doing this for 20+ years. I guess I will trust him.

So we will start chemotherapy on Tuesday April 2nd. Chemo will consist of two 8 week periods and I will get chemo treatments every 2 weeks.  The first set of chemo will be two different drugs - Adriamycin (Doxorubicin) and Cyclophosphamide (Cytoxan).  The 2 drugs will be mixed together along with an anti nausea concoction and some steriods and delivered through the mediport for about 2 hours.  The day following each chemo treatment, I need to go back to the office for a shot of Neulasta. The Neulasta is meant to increase white blood cell counts quickly to prevent the decreased immunity that usually accompanies chemotherapy.

The 2nd set of chemotherapy will be a drug called Taxol (Paclitaxel).  I will get the Paxol every 2 weeks for 8 weeks. When the Taxol is done, then I get to look forward to radiation. I don't know how that will work, and hopefully I won't have to find out. 

According to my schedule, that means I will be going through chemotherapy through the end of July. Dr. Dougherty assured me that I would in fact lose my hair. That was sad. I was slightly excited to think I wouldn't have to shave for awhile, but then he said not to get excited, it is usually just the hair on your head that falls out... where is the bright spot here? 

So we left Dougherty's office feeling deflated. I was going to need 16 weeks of chemotherapy and maybe radiation. I was going to lose my hair. I was not likely to lose weight (Thanks to the steriods they mix in with the concoction).  I have worked really hard to find a bright spot along every step of this journey, but this one was pretty hard.... oh wait ... I get to pick out a wig!  This is going to be a blast!

 

The Boob Setback

On Wednesday I had my follow up with Dr Burke. He was set to remove all my stitches, my ab drains, and schedule me for the next attempt to put in breast expanders, which was the first step towards silicon implants. 



The portion of the ab drain that was inside my body

 

 

 

 



As it turned out, the breast stitches being a week old were not ready to come out yet. He told me to ask Dr. Lindfield to take them out while she is installing my Mediport next week.  He did remove my ab drains, which was much less painful than the chest drain removal was.  When Dr. Burke's nurse removed my chest drains last Friday, it felt like the portion of the drain that was inside me was wrapped up in nerves so when she yanked it out through the small hole in my armpit, it felt like she took all the nerves with it. I actually cried. And then I would have horrific visions of the pain I would endure when they took out my ab drains. I had been hating this drains, but dreading them coming out for almost a week.  Much to my surprise, my nerves were not as raw in my abs and it was virtually painless. 

Dr Burke asked me if I had received my pathology results yet and I told him I did. I shared the news about chemo and radiation. Dr Burke looked very upset now. I do remember him telling me this, but the news of my possible radiation was bad news for a plastic surgeon. Radiation will for sure mess with implants and expanders. In fact, it would have messed with my DIEP transplanted boobs too.  Now that we know that radiation is a possibility, Dr. Burke does not want to continue with reconstruction until radiation is over or I know for sure that I won't be getting radiation.  If I do get radiation, Dr. Burke won't begin reconstruction until 2 to 3 months after radiation is over. So assuming I will need radiation, which will come after chemotherapy, and then I need to wait 2-3 months, we are looking at beginning boob reconstruction again in December!  DECEMBER!!!!! And the expanders are just phase 1.  I am going to be flat chested for almost a year. 

This is a very sad week. I am going to be bald and flat for quite a while.  Oh well. I didn't really like my boobs anymore anyway and my hair is kind of gross.  Wig shopping is going to be a ball and before my hair falls out, I want to get a really wild hairdo! I will make this fun if it kills me!