UCSD Cancer Center

It's official... I changed my primary care provider to UCSD so I can be treated there. I could only make the change on the 1st of the month, so it's been frustrating to wait. I received my new insurance card in the mail today, so on Thursday I'll officially be a patient at UCSD. My doctor there is Anne Wallace. She is the Director of the Breast Care Unit specializing in breast cancer surgery and reconstruction. She's Board certified by both the American Board of Surgery and the American Board of Plastic Surgery. That means I'll have the same surgeon for both the mastectomy and reconstruction. I like that idea. She is recommending a nipple-sparing mastectomy with immediate reconstruction with an expander. Basically, a temporary inflatable implant will be placed behind my chest muscle at the same time as the mastectomy. Over the next few months, it will be incrementally filled with saline to expand the muscle to look like breast tissue and fit a larger implant. Once it has been expanded to the correct size I'll have another surgery to remove the expander and replace it with a regular implant. I think at that time I'll also have whatever surgery is needed on the left to make things more symmetrical (I'm still leaning towards not removing the left breast). Now I'm just waiting for a date. Dr. Wallace and her staff are on vacation until April 5, so I have to wait until then to schedule my surgery. A week seems like forever, but what choice do I have? I should also receive the results from the BRCA gene testing this week. So for now, I'm just waiting...

I also wanted to say thank you to all of you who have reached out to me. I've received so many encouraging and supportive emails, phone calls, cards and gifts that I am overwhelmed! I know I have amazing friends and family but your support has been more than I could have imagined and I am forever thankful. There is no way I can feel alone, depressed or scared with all of you in my corner with me! Thank you!

Things are finally going my way

Met a doctor I liked that my insurance will cover who was actually on time for the appointment! How cool is that?

Doctors, Doctors, Doctors

Yesterday I met with 2 more doctors - a 2nd oncologist and a plastic surgeon. The oncologist was great - very personable and he lives around the corner from me. He basically told me the same things as Dr. Link (the OC oncologist) and said that he was pretty sure that the cancer is not in the lymph nodes nor is it invasive. He ordered a blood test to see if I have the BRCA1 and BRCA2 genes (gene mutations that greatly increase your chances of getting breast and ovarian cancer). My blood is on it's way to the lab in Salt Lake City to be analyzed. If I test positive for the genes, then I will definitely have the left breast removed too (the cancer free side) and look into getting my ovaries removed. But, that's a whole different blog...

The plastic surgeon appointment was good as well. I'm not sure what makes surgeon's time more valuable than mine, but apparently it is. I've waited an hour past my appointment time for every surgical appointment I've had. I liked this doctor though. We talked at length about the pros and cons of removing the left breast (non-cancer side). The pros are 1. not having to worry about getting cancer in that breast, 2. not having to test that breast for cancer (regular mammograms) and 3. a more symmetrical cosmetic outcome (the left breast will match the right). The cons are removing a perfectly good body part that I kind of like. There is an option to insert an implant on the left side to make it look more like the reconstructed right breast (apparently it's difficult to make reconstructed breasts look like they've nursed 2 kids and lost the fight with gravity) As for the right side, (cancer filled, must be removed - If you're uncomfortable reading about female body parts, you should now skip to the end of this post...) he suggested making a small incision right below the areola where the breast tissue can be removed and the implant added. The nipple will be removed, but sounds like the areola can stay. (If the areola is removed, a new fake one is created with a tattoo. I've always wanted a tattoo, but not of an areola...) He showed me some photos of previous patients who have had the same procedure - the scarring was minimal and the breasts looked real - what more can I ask for?

Next week I'm meeting one more surgeon and then I'll start to make some decisions. Hopefully, I'll have news of a surgery date by the end of the month. Until then keep praying for healthy lymph nodes!

Oncologist Appointment

When one of the world's leading oncologists specializing in breast cancer is located an hour away, of course you make an appointment. I spent an hour with Dr. John Link today and feel good about our discussion. Dr. Link wrote The Breast Cancer Survival Manual (which I've read cover to cover twice), and what he says is all that counts. He reviewed all of my tests and agreed that yes, there is extensive ductal carcinoma and that it does also look like it has become invasive. However, he thinks the invasive tumor is about 10 mm, so very tiny. He looked at my 2007 ultrasound and agreed that it did not show any cancer and that yes the next step should have been a mammogram, but since I don't own a working time machine I'll quit complaining... He said that most likely the cancer has been there 3-4 years. That made me feel better because recently I've been torturing myself with thoughts of nursing my children with cancer-filled milk. He assured me this was not the case. (I'm a good mom again!) He also reassured me that I don't have an increased chance of growing other types of cancer just because I have breast cancer now. (Yippee!) He suggested I have my surgery within the next 2-3 weeks. So, as soon as I get this insurance / medical group nightmare cleared up I'll be ready to go. There's also a cool new test I'm going to get called Mammaprint that tests the cancer cells and analyzes 70 genes. I think the most common test analyzes 29 genes. This means I'll have the best analysis available of my risk of recurrence and be able to completely customize my post-surgical treatment (if needed). I'm still praying for healthy lymph nodes and would love if you would too!

March 14

Ok, the pity party's over. (I told you it wouldn't last long.) All the negative feelings have been fixed by a perfectly sunny day, sitting and reading a 12" stack of trashy magazines, and a yummy Stabucks dark cherry mocha with red velvet cupcake. Seriously, it doesn't get much better. Looking forward to meeting some new doctors this week and hopefully being able to get my surgery scheduled soon!

I'm angry.

So you know how I’ve had such a great attitude about the cancer? Not today. Today I’m angry. I’m angry that 2 years ago I knew something was wrong but that when the doctors told me I was fine I believed them because they told me what I wanted to hear. I’m angry about the amount of information that was not explained to me. Two years ago I was 36, a non-smoker, physically active, with no cancer of any type in my family. I was not considered a cancer risk - Only 5-7% of all breast cancer occurs in women under age 40. But I had found a lump that was not there before and I knew that was not right. My doctor sent me for an ultrasound - it came back clear. I was told the lump probably was fibrocystic or due to hormonal changes. I didn’t know then that ultrasounds are not good at detecting ductal cancer and that 80% of cancer in the milk ducts are found by mammograms. If I had done a mammogram then it would have show calcifications that are an indication of ductal carcinoma. But I didn’t know to ask for a mammogram. At my annual exam a month later the lump was still there. The doctor referred to the earlier ultrasound and said it was fine. A year later, I went again for my annual exam. The lump was still there. The doctor referred to my earlier ultrasound and said it was fine. In December I went again for my annual exam. This time the doctor said the lump probably should not still be there and did a needle aspiration to try to get fluid from the lump. She was not able to extract any fluid which she said was good. So for 2 years I was told the lump was nothing to worry about and after the needle aspiration was told no liquid was also a good sign. By then I’d been living with the lump for so long I no longer worried about it. The doctor sent me for an ultrasound and mammogram. The ultrasound again came back fine. The mammogram showed calcifications and I was told they could mean a pre-cancerous condition. Pre cancer doesn’t sound very scary – it’s not cancer, right? It’s pre-cancer. I figured at the worst, a 2-year old pre-cancerous lump could probably be easily removed. I was then sent for a MRI and was again told it was likely I had a pre-cancerous condition and a biopsy was recommended. I had a stereotactic biopsy where an incision is made in the breast and a vacuum needle is used to extract tissue. My incision was made a good 2” above the nipple. I didn’t ask where the incision would be made or why it would be made there. I didn’t know anything about biopsies. I now know that not only do the incisions from these tests leave scars, but that if the test shows you have cancer the skin around the incision area needs to be removed along with the infected breast tissue. I have since learned that you can request your breast biopsy incision be made close to the nipple to hide scarring and that some hospitals have adopted this as a normal treatment. I didn’t know to request that. The biopsy report says DCIS – cancer inside the milk ducts (still considered pre-cancerous since it has not yet spread). My treatment is a mastectomy. So I’m angry that a condition innocently called pre-cancerous requires the complete removal of my breast. I’m angry that even if my mastectomy is done by the very best surgeons so there won’t be any visible scarring, I will still have a scar from the biopsy and the removal of the surrounding skin. I’m angry that I didn’t push for another opinion 2 years ago when I knew in my gut that something was wrong. I’m frustrated with my insurance company. Mostly I guess I’m just angry that cancer is happening to me. In fact I’m pretty pissed about it. My good attitude will be back tomorrow, but for today I’m too angry to care.

The Good, The Bad & The Beautiful

Got a 2nd opinion today from a doctor who reviewed all of my radiology and pathology tests. The good news is that there definitely is no cancer in my left breast. Not even a speck. The bad news is that it looks pretty good that the cancer in the right breast has escaped the ducts and is starting to be invasive. My "extensive DCIS" has outgrown the ducts and is trying to spread. Either way, it doesn't change the original recommendation for a mastectomy to remove the cancer. What may change is the treatment after surgery - radiation and/or chemo will be recommended if the cancer is invasive and in the lymph nodes. So keep your fingers crossed that the cancer bugs haven't been able to get very far!

I met another angel today - another breast cancer survivor (apparently that's what anyone who has had breast cancer is called) who offered lots of advice and encouragement and even showed me her reconstructed breasts. I am in awe of the number of women who are willing to not only meet with me and give me advice about dealing with breast cancer but who are willing and even eager to show me their new boobs. My neighbors must be wondering what the heck is going on over here with the number of topless women hanging out in my kitchen. And I'm wondering if this is a practice reserved for breast cancer or if this is common to all cancers. Do men take their pants off in their garages to share their testicular cancer scars? Anyway, seeing the bare breasts have made me feel very reassured that my scars will not resemble Frankenstein's and that I could even come out of the surgery looking better than I do now. One angel even told me that next year I will be the one flashing my breasts in someone else's kitchen (I assume she meant without drinking excessively). Maybe, but in the meantime I'm thinking about investing in some mardi gras beads just in case more survivors come knocking on my door.

Research

I now feel like I know more about mastectomies than anyone should ever need to know. I've learned you should never google mastectomy photos, and that there are different types of mastectomy surgeries. They all involve removing breast tissue, but differ as to where the cuts are made (and where your scars will be) and the amount of skin being removed. None seem like very exciting options. Then there are even more options for reconstruction. I have an appointment with a surgeon tomorrow so I'm hoping to learn what types of procedures will work for me and my type of cancer. And for anyone keeping track, this is day 13 with a pretty hole on my chest from the biopsy. Keep praying for healthy lymph nodes!