Surprise!! (3/14/2014)

So it took 2 weeks for me to finally come to terms with the fact that I wouldn't need chemotherapy and that would be ok, better than ok. I was finally starting to understand how lucky I was that I wouldn't need chemotherapy, but strangely felt like I wasn't a breast cancer survivor because I didn't have to suffer as much as others I knew who were in the same position. None of the side effects of chemotherapy, and they are really bad ones! And I wasn't going to have to lose my hair! I know that sounds stupid but it was a big fear, even though I was going to do whatever it took.

Well as I was moving on with my life, I had completely forgotten about that second opinion from UW because it had been almost 3 weeks. I figured no news was good news, I mean how different could a pathology report be with the same specimen?!! And then I got a call from my oncologist, usually he tells me things over the phone, but he wanted me to come in and see him that afternoon. I knew that it was going to be bad news, I know how this works! I went alone and that was probably a mistake, but I knew what was coming so I thought I was prepared.

And of course the pathology report from UW came back positive for invasive breast cancer, exactly what they always thought. But how could they have missed that! Not only was it invasive, the pathologist had 5 other pathologists verify her findings because it was such a complex tumor. Trust me when I tell you that you don't want to be interesting to doctors, you want to be run of the mill! So I have triple negative, aggressive, highly replicating invasive breast cancer. I wasn't mad as much as I was sad,  because this means that I have to have chemotherapy (after I had talked myself into how great it was that I didn't need it). This changes everything, including my prognosis, now instead about a 5% change of recurrence with metastatic disease, I had a 30% chance! Not to mention the fact that if they had known this to begin with, then I would have had chemo a lot earlier, ideally before surgery. I felt that every step of the way, they had tried to not see what was truly there all along, not anyone's fault per se but definitely not lucky. But then if my oncologist hadn't sent it for second opinion, I could have had metastatic disease in a few years, so he did save my life and for that I was definitely lucky and grateful! And more good news was that my nodes were still negative based on the second opinion as well so I was stage 1.

Recovering from Surgery

Easier said than done! I have had some friends that have gone through this same surgery tell me how difficult it was to recover, but I still thought how hard could it be? It was hard! I had just had a c-section so I figured it couldn't be too much more difficult than that, but I was very wrong. The worst part of my recovery was having drains in both sides of me for over 2 weeks, it was gross and painful. I was very proud though that I weaned myself off of the pain medication within one week. I needed help doing everything...showering, dressing, driving! I could barely hold my own plate of food! I had a lifting restriction of 10 pounds for 6 weeks so the very worst part of the entire recovery process was that I couldn't carry my baby! So far I feel like I have missed my little baby grow up so much because I have had so many doctors appointments, procedures and restrictions after surgery...it was depressing!

A week after surgery we got the pathology report back. Remember that my doctors were very sure this will likely come back invasive but the pathology report showed DCIS (non-invasive) with microinvasion. Well what did that mean? I hated that this was the gray zone, I either wanted it to be one or the other not a little of both. This meant that there were a few very small areas less than 1 mm in size that had broken out of the duct and therefore had the potential to get into my blood stream or lymph system, but apparently the chances are very small and therefore I would not need chemotherapy according to my doctors. Of course I have two oncologists so I always had a second opinion and I couldn't imagine it any other way because my case has been so confusing thus far.

Now you would think that I would be thrilled that I didn't need chemotherapy, but I was not! I was told this was invasive, I had prepared myself for chemo and the worst case scenario and now they were changing their minds! A part of me didn't trust it and another part of me wanted chemotherapy because I wanted that reassurance. I wanted a guarantee but of all people I should known there was no guarantee in life but especially in medicine.

My oncologist sent the pathology specimen for second opinion to the University of Washington just in case. I guess I was suppose to move on now, how do I do that? This was all so anticlimactic!! Now what?

Surgery Day! (2/21/2014)

Surgery day came quickly. Of course I had a cold right before I had to go into surgery but didn't dare tell my doctor for fear of having the surgery postponed. 

Going into the surgery, I was told that this tumor will very likely be invasive, even though all the multiple biopsies showed DCIS (non-invasive disease). So I was hoping for the best but expecting the worst. I felt like I had a very realistic outlook. I was just hoping and praying for my lymph nodes to be negative because my prognosis would be so much better that way. 

On the day of surgery I was nervous but excited to get the tumor out of me, I was sad about losing my boobs for a split second, but I got over that quickly. My first stop was to radiology to get my left breast injected with dye so they know which lymph node to take out first which follows the flow of the lymphatic system. Then off to the OR, where they did a great job of making me feel comfortable. I thought that was funny because I knew as soon as they put me to sleep, they were gonna manhandle me and do what they had to do, but that extra time to get me a warm blanket, let me pick the music, and make me feel comfortable before they put me to sleep meant a great deal. It was also funny because the anesthesiologist asked me where I wanted to go on vacation and I answered as if it wasn't a rhetorical question and I started to answer " we are hoping to go to Hawaii"...then quickly realized he meant where did I want to go to lala land as I felt the medicine go into my IV and I was out! 

I was in for about 6 hours and had 2 surgeons working on me at the same time, a breast surgeon that does the mastectomies and the plastic surgeon that does the reconstruction. My husband waited for me the entire time, my mom home with the baby, and it occurred to me that there would be no one waiting with my husband. This is the part that I found the most amazing...I actually had my friends and co-workers that didn't even know Matt with their own kids volunteer to keep him company and they did! I also called one of his own co-workers and asked her to see if any of them would be available to visit, expecting only 1 person to be able to make it and there were a stream of visitors that came. It might be funny that this is what I worried about going into surgery, but it was. I knew he was going to be there for me when I woke up, but who was going to be there for him! He has been so strong, I think we forget how much he was going through. A new baby, a post-partum wife with the baby blues, then breast cancer! He is and has been beyond amazing and I am the luckiest lady in the world!

Happy Valentines Day/Happy Boob Job Day! (2/14/2014)

So if you are gonna have something awful happen to you, you might as well get barbie boobs out of the deal! So I should say that I am not a person that would have ever gotten a boob job on my own, I hate going to the doctor, never wanted surgery for anything and barely take medications, but all of this was out of my control and I got over all of these phobias quickly because I had to.

I had no idea there was so much decision making when it came to boob jobs, saline vs silicone, round vs this new natural shaped breasts, nipples vs. no nipples...too much. To a certain extent, some of these choices were made for me, I could have a skin sparing mastectomy, but they couldn't spare my nipple or areola on the left because it was too close to the tumor, so again for symmetry purposes I took the nipple and areola from the other side and decided on nipple tattoos. There is something else I never thought I would get in my lifetime... a tattoo! But they looked surprising natural in the pictures. Now you can decide to have a nipple reconstruction where they pucker your skin to try to make a nipple, but I didn't feel that I needed that. There are also nipple prosthesis, which was funny because my plastic surgeon said I can use those for the times in my life I want my nipples to stick out. Now if you are a girl, you know that there is usually no occasion that you want your nipples to stick out, that was such a guy thing to say but it made me chuckle!

So because we didn't know what kind of tumor I truly had, we had to keep all our options open, so I would have a skin sparing bilateral mastectomy with tissue expanders placed (these are like place holders that they will expand until I get to my desired size), so that I can get radiation and chemo if I needed. The other option is to get the implants right away, but then radiation would destroy the implants. Oh and all of this was decided on Valentine's Day! Surgery was scheduled for 2/21/2014, my baby would almost be 2 months old, as was how long it had been since my last surgery (C-section), and this would be almost a month since my diagnosis. This felt super slow to me, but I understood that this is how long these things take.

More Tests and Results! (2/4/2014)

So the next week after my diagnosis, I had an MRI of my breasts to see if the other side had any cancer, and thank god there wasn't. It also takes a better look at your lymph nodes and I had one questionable lymph node in the left, on the side of the tumor. So when I went in for my second set of biopsies, they also biopsied my questionably enlarged lymph node. Well after they poked what seemed like a million holes in my left breast and armpit, the results came back DCIS again and my lymph node was negative, good news again! Although this was promising, my oncologist and breast surgeon was still skeptical, think that this is really invasive cancer that we keep missing because it is common to have both DCIS and IDC together. Who knew!

By the way, I am a doctor, but had to learn all of this just like any other patient. I think being a doctor made me understand things easier, but also probably made me worry more because I think it inherently made me more pessimistic because of all the sad stories I see all day as a doctor. I really didn't ask why me, because in my profession I have seen horrible accidents and diseases happen to the nicest people and I understand that these things can happen to anyone and no one person is immune. I wasn't ready to have a pity party for myself yet, why not me?

I should take a moment to explain the difference between DCIS and invasive cancer (IDC). DCIS is ductal cancer that is still within the duct, which means that it has not had the opportunity to spread because it has had no access to the blood or lymph system- I'd say best case scenario and considered Stage 0. IDS is invasive ductal cancer, which means that it has broken itself out of the duct and is now free to rome to other places via the blood or lymphatic system.

So the next step was to go straight to surgery, because they had no reason to do chemo first without being able to prove that I have IDC, which is the indication for chemo first, even though they really thought that is what I had. The only way to know exactly what I had was to take the entire tumor out and do a lymph node biopsy to confirm my type of cancer and the stage that I was in. I had to decide if I wanted a single mastectomy or a double mastectomy. A lumpectomy for me was not really an option because the tumor was about 4-5 cm on palpation and as seen on ultrasound. Well I really didn't think about this for very long, take them both! I'm 31, its aggressive, no need to worry about it coming back into the other breast (although there is still a small risk of breast cancer even with bilateral mastectomy, I felt that I should clarify that, the risk isn't zero, but its reduced by about 90%), and for symmetry purposes, its better to take them both. The other consideration into single vs double also depends on genetic testing with BRCA 1 and 2 (yes the Angelina Jolie gene), of course so many other people have it, but she is the most recognizable face of this genetic mutation that predisposes you to breast, ovarian, prostate and pancreatic cancers. So if you are positive for this gene mutation, you are gonna want a bilateral mastectomy, I chose the bilateral before I even got the results and I was negative for the gene, another thank god moment!

So I was off to the plastic surgeon to decide what kind of reconstruction I will choose to have...

The Beginning (1/25/2014)

Let me start by saying I have never written a blog, nor did I ever think I would be a person that would blog. The reason for my recent interest in blogging is because I think that I now have something important to talk about, I think it will help me cope and possibly heal, and also because I have recently been reading others blog posts about breast cancer and I have found their posts helpful, uplifting and their words really do give me strength. I hope that by the end of this blog, I will be able to do the same for someone else. I am writing this blog from the perspective of the patient, although for most of my adult life, I have been on the other side of the table as the provider. Needless to say, this will be an interesting journey.

So, where do I begin...my life took a dramatic turn 2 days ago. Something I never thought would happen to me (we all think this way) I received the dreaded diagnosis of breast cancer. I first noticed a lump in my left breast while I was 7 months pregnant with my first baby. I got it looked at right away and had an ultrasound and was told it was just dense breast tissue. I was so relieved and wanted to believe the radiologist, but in the back of my mind I was still concerned. I mean I am a doctor, I know at least a little about scary breast lumps, and mine was firm, hard, felt like the end of an eraser tip (like we learn in medical school), and still I believed that it was likely just a milk duct related to my pregnancy. I read online about all the things it could be, including the fact that breast cancer is often missed in pregnancy.

A few months later, I had my beautiful baby boy, Finn and have been lucky that he was born healthy and has been a wonderful little boy. His labor and delivery was difficult and traumatic, but well worth it. During this time, I was obsessed with breast feeding, my milk took a long time to come in and I never really made enough milk for my baby, which was sad for me. I also noticed that my lump had become much larger. I thought it would get better once my milk came in but it didn't and within a few weeks of my baby being born, I brought this up with my OBGYN again and got another ultrasound. This time, the radiologist saw a large mass on the screen, very irregular, she looked concerned. They also checked my left armpit for any grossly enlarged lymph nodes. I new that was not routine and started to instantly panic. She wanted a mammogram, I did the regular mammogram, then she wanted 4 more pictures so by then I was crying through the mammogram. She told me that she was hoping that this was a lactating adenoma, but it could also be cancer. I needed a biopsy to be the tie-breaker. By now I was extremely concerned, worrying that it was the worst. I had to wait one week to get the biopsy...this was the longest week of my life. And then when I went for my biopsy, I could see it all over the radiologist's face. I knew at that moment that the biopsy was going to be positive. I again cried through the entire procedure, not because it hurt but because I knew my life would never be the same.

The radiologist tried to distract me by asking about my baby, but that just made me cry even harder. How could I possibly have cancer and a new little baby, the possibility that I may not be able to see him grow up was all I could think about. And then of course the biopsy results came back positive for ductal carcinoma in situ. My OBGYN called me and told me over the phone at 9am and I already had an appointment with a breast surgeon by 12:30 and I saw the oncologist right afterward that same day. I was impressed and thankful for this fast response. A little part of me didn't want to know what this all meant, and the other/bigger part of me needed to know what we were going to do about it. Of course I called my heme/onc colleagues that I knew to see what I should do and the everything snowballed from there.

My husband, son and I went to the hospital for 2 doctors appointments that took 6 hours total with labwork and a trip to the pharmacy. It was a whirlwind. During my appointment, both my surgeon and oncologist explained to me that they believed, based on the size of my mass that the cancer was more invasive than the pathology report made it seem. DCIS would be one of the best breast cancers to have, but they were convinced its invasive ductal carcinoma (IDC), which is just how it sounds. So now not only do I have breast cancer, but I likely have a more aggressive form. Well great, somehow I already knew that it was aggressive, it has to be if I'm 31 and have breast cancer. So they sent me for another biopsy and an MRI, and it took another week to get that. What part of time is of the essence did these people not understand! I knew I was a patient but acted like their worst nightmare physician. I figured I did the same for my own patients, I had to find the guts to do the same for myself, so my appointment was for earlier in the week.

The next day, I went in for a bone scan and CT of the chest/abdomen/pelvis for staging purposes. This was the scariest part. This would determine whether I had metastatic disease, which would be a whole entire ballgame. I experienced what it was like to be a patient, and it sucks sometimes, its scary, and the people that take care of you, the techs and the nurses have so much influence on your experience. I was thankful I had great ones. As I lay in the CT scanner getting IV contrast that made my entire body feel like it was on fire with an intense burning that makes you feel like you are gonna pee your pants...but you don't! Then I had the bone scan which was longer and harder to stay still.

Well since I had all this poison  in my body including radioactive stuff and my oncologist had convinced me by that point that I was going to start chemo like tomorrow, I gave up breast feeding and of course felt like a failure, but you gotta do what you gotta do!

That same night of my scans, the day after my diagnosis, my oncologist called me on the phone and gave me the best news ever, that I had no sign of cancer anywhere else in my body! Now off to do more testing and biopsies next week, because nothing in medicine happens on the weekends!