Selecting Treatment for DCIS

Every cancer diagnosis is unique and dependent on many individual factors. It is full of individual characteristics and variables. Once you begin your journey, it's unlikely that your diagnosis will be identical to another person's.

I'm not a medical professional. I've never been through this before, and everything I share is based on my own personal experiences guided by a medical team that I trust. Just like the diagnosis is unique, the course of treatment is also unique. I encourage you to research everything recommended to you by your medical team. It will be based on your complete medical picture. What's right for me, might not be right for you. I can't tell you what's right for you, but I will share with you some of the information that I used to make my decision and some of the facts that I researched. I feel extremely lucky and blessed that with my diagnosis there were choices. I'm saddened that many cancer patients aren't offered any choices.

My diagnosis was Ductal Carcinoma In Situ (DCIS). That is considered to be Stage 0 breast cancer, and is non-invasive. Before I had my diagnosis, I chose to do a surgical biopsy of the tumor - or lumpectomy - where the entire tumor was removed for biopsy. When my diagnosis came back as DCIS, I had a choice of following up with a second surgery to remove more tissue that would ensure all of the cancerous tissue was removed followed by radiation treatments, or to do a mastectomy that would not require radiation or any further treatments. I chose to have skin-sparing bilateral mastectomy with immediate reconstruction that would be completed in phases. My surgeon also recommended a sentinel lymph node biopsy to try to ensure that no cancer cells had spread to my lymph nodes. I chose to do that as well.

Why did I choose mastectomy? It's a major surgery - my first in fact. Because I chose mastectomy, my treatment did not include radiation or drug therapy. (Chemotherapy is not usually associated with this diagnosis, so none of that either.) I believe that I have reduced my chances of recurrence as much as I possibly could have. There are certainly no guarantees, but I sleep better knowing that I don't have to go through this testing and these surgeries to follow up on a lump in my other breast years down the road. When I met with a radiation oncologist he told me that either way I went, I couldn't make a wrong decision. But he also told me that if I had another lump in the future, that my medical team would likely recommend mastectomy at that point. That would mean going through every single step that I've been through all over again. Finding the lump. Worrying. Mammogram. Ultrasound. Biopsy. Waiting for results. MRI. And then - surgery again. Likely a mastectomy.

I'm a worrier. If I had chosen lumpectomy and still had breasts, I would be constantly scared that I'd find another lump. I'd be counting down the days and hours until my next mammogram, and I would be living in fear. I'd lose sleep over it. Some women know that they will have body image concerns, but I honestly am not one of them. I don't care at all about losing my breasts and having scars. My fiancé also doesn't care. I don't feel like less of a woman at all. I don't plan to have any additional children in the future or breastfeed again. And I don't have a need for functioning breasts. I'm totally comfortable with the idea of having reconstructed breasts.

The language of cancer is foreign to someone who hasn't been exposed to the terminology before. I had never heard of DCIS before my diagnosis. I knew about stages of cancer, and that women that I have known have gone through the journey before me, but I didn't have to memorize the terminology. Here's a rundown on my diagnosis, if you're uncertain about the terminology and would like to learn a bit more.

Ductal Carcinoma In Situ (DCIS) is a noninvasive condition in which abnormal cells are found in the lining of a breast duct. The abnormal cells have not spread outside the duct to other tissues in the breast. In some cases, DCIS may become invasive cancer and spread to other tissues. At this time, there is no way to know which lesions could become invasive.

DCIS is classified as Stage 0. The breast cancer stage is based on the results of testing that is done on the tumor and lymph nodes removed during surgery and other tests.

Most patients with breast cancer have surgery to remove the cancer from the breast. Some of the lymph nodes under the arm are usually taken out and reviewed to see if they contain cancer cells. A sentinel lymph node biopsy is the removal during surgery of the sentinel lymph node - the first lymph node to receive lymphatic drainage from a tumor. It is the first lymph node the cancer is likely to spread to from the tumor. A radioactive substance and/or blue dye is injected near the tumor. The substance flows through the lymph ducts to the lymph nodes. The first lymph node to receive the substance or dye is removed. A pathologist views the tissue under a microscope to look for cancer cells. If cancer cells are not found, it may not be necessary to remove more lymph nodes.

The standard recommended courses of treatment for DCIS may include:

• Breast-conserving surgery (like lumpectomy, which removes the tumor and a small amount of normal tissue around it) and radiation therapy with or without tamoxifen
• Total mastectomy (surgery to remove the whole breast that has cancer; some of the lymph nodes under the arm may be removed for biopsy at the same time as the breast surgery or after) with our without tamoxifen. In a bilateral mastectomy, both breasts are removed. If a patient chooses mastectomy, breast reconstruction (surgery to rebuild a breast's shape after a mastectomy) may be chosen. Breast reconstruction may be done at the time of the mastectomy or at a future time. The reconstructed breast may be made with the patient's own (non-breast) tissue or by using implants filled with silicone gel or saline.
• Breast-conserving surgery without radiation

I researched and considered alternative treatments as part of my plan as well. Each patient is entitled to be their own advocate and ultimately be in charge of every step that you take. I'm learning about, and taking steps to improve my nutrition every single day. I also believe that increased activity will benefit me. I believe that everyone can benefit from that no matter what.

I used Navigating Cancer and Blood Disorders, a web site founded and developed by accomplished professionals from the healthcare and technology worlds, as my primary source for describing DCIS and treatment options in this blog. This web site was provided to me by my oncologist, and is one that I trust. I encourage you to use sources provided to you by your medical team as well. There are tons of sites out there, but please spend most of your time at the ones your medical team refers you to.

Expanders Out - Implants In!!!

Tonight I'm home in absolute awe over how EASY today's surgery was. I keep thinking I'll start to feel worse at any minute, because I don't feel that bad at all right now! (Thanks, pain meds!) The hardest part - legitimately - was all the WAITING I had to do before my procedure began. 

I had to make sure that I didn't eat or drink anything after midnight the night before, so I got a snack around 11 p.m. That was a smart move since things were slower than planned. This morning I showered with anti-bacterial soap, and shaved my legs in case I can't for several days. I got my driving pillow for the seatbelt, my pain medicine, changed into my glasses, and chose comfy, loose clothes (and a button-up shirt.) My procedure was scheduled for 1:15 p.m. We arrived at 11:30 and got checked in with the receptionist. In 15 minutes or so I was called back to get in my fancy gown and weird grippy socks to get prepped for surgery. That part was quick. And then I waited. And waited. And waited. 

I was so happy to see a nurse that has been in all THREE of my surgery pre-ops/recoveries. She even remembered me. It made me feel comfortable instantly. As she was reading my paperwork, she asked me if she was in my other surgery. And later she remembered that she was in both of my other surgeries. (I thought so too, but was afraid it was a delusional moment post surgery.) The nurses did all the standard questions and typing into the computer - when did you last eat, last take meds, did you leave the country, blah, blah, blah. And they took my temp and blood pressure. For some reason my temperature was 99.8 - I was really nervous that would be a deal breaker, and I had no clue why I had a low-grade fever. I wasn't feeling sick - just really nervous and anxious. There was no other mention of it, but I was really afraid they'd tell me I had to postpone.

At around 1:05 p.m. the nurse told me that the surgery before mine hadn't ended yet, and that it would be a few more minutes. 

Around 1:45 p.m. my surgeon came by to talk with me. He told me it would be a breeze, and that he'd place the implant size that looked the best. 

About 10 minutes later I met with the anesthesiologist. He put me at ease too. 

Usually after the doctors talked with me at my other surgeries, things started to progress quickly, and it wasn't long before the OR nurse arrived and introduced herself. Before she materialized, I went to the restroom really quickly, and then sometime after 2, it was time to go back. I handed over my glasses (which meant that I could only see blurs and outlines from that point on), and I said "see ya later" to my fiancé.

In the operating room they had pop music playing. I told myself I'd remember the song, but of course, I don't. The nurse leveled out my cot so that I could get up on the operating table. I did. I remember them untying the gown around the back of my neck as I positioned myself in the right spot on the table. They placed a few sticker sensor things on me, and then I got the mask for the deep breaths. I think I took 3, or maybe 4, breaths. I heard the anesthesiologist tell me to pick something good to dream about, and the next thing I knew I was waking up in recovery! It was a little over an hour later, in reality.

My eyes felt super heavy when I first woke up. I struggled to keep them open. I didn't feel any pain - or at least nothing compared to the pain waking up after my mastectomy - just some soreness. And my arms felt a bit sore too, for some reason. I had an oxygen mask on, and I hoped that breathing in deeply would help me feel normal faster. I hoped that I wouldn't say anything stupid and incoherent to the nurses while I was coming to. I reminded myself to keep my mouth shut. :) The nurses let me rest for several more minutes, and said they'd go get my fiancé to come back with me. They also let him pull the car around to patient pick up, so I knew I'd be moving out soon! When he arrived back there, my eyes were still feeling heavy, but it eventually got better. The nurses got me some ice water to sip on. And offered me some Sprite. I had a yucky taste in my mouth, and they said the Sprite would help. The biggest win of all - NO QUEASINESS this time! At 4 p.m. they gave me some crackers, and I took one of my pain pills. I went to the restroom again, got dressed, and it was time to go home!

When I got home I ate some crackers and chicken noodle soup since I wasn't able to eat beyond midnight the night before surgery. I started my antibiotics. I've felt great ever since! I can move my arms like normal! I didn't need help to get to the restroom. I could get in and out of the car on my own. It is AMAZING how awesome I feel! Now, I know that tomorrow I'll probably feel sore and achy, but I can totally handle this, so far. :) I'm on my recliner/couch with my pillows around me. I've got ice packs to use intermittently to help with pain and swelling reduction. And I feel great! I did have some bleeding on one side - I was told that would be normal, and to change the gauze as needed. We did that right before bed. It's a slow staining, but I'll keep an eye on it. I can see my incisions through the steri-strips. I'm wearing an elastic binder that closes with Velcro in the front. That is holding the gauze against my incisions. I can see that the same mastectomy scars were used, and that they are not cut the entire length. The ends in the middle of my chest aren't cut. I'll take some photos tomorrow. And the best part - THERE ARE NO SURGICAL DRAINS!!!!!!!! I really hate those darn things.

All in all, I am so pleased. The surgeon told my fiancé that everything went great. I have one side that expanded differently, and that might cause some symmetry problems, but we won't know for sure for a few months. I'm really pleased with the results. My skin feels way more normal when I press on it. When I put my hand over my heart I don't have to cup my hand around a bulky tissue expander. And, from what I can see so far, the placement is way closer to a natural breast placement. Thank. Goodness.

We'll see what tomorrow - and the weekend ahead - brings! Thank you so much for your well wishes and prayers. I was so nervous all day today, and I thank you for thinking of me.

Ugh, I hate IV's, but today's nurse told me to take a deep breath when she inserted it, and it hardly hurt at all! The stinging when one of my medicines started was way worse.

My oncology facility gave me this super cool reusable (it has a snap) lymphedema alert bracelet. The nurses thought it was awesome. Not sure they've seen it before. It's hot pink, and it's way cooler than the paper one that I usually get.

Surgery #3 is Tomorrow - Silicone Implant Day

Tomorrow - July 30, 2015 - is surgery #3. I'm going in to get my tissue expanders removed and replaced with silicone gel implants. I'm very excited, but I am also trying to keep my expectations at a realistic level. I know that I might not be 100% thrilled with the outcome. They won't be perfect. They definitely won't look like my original breasts. But they'll be breast-shaped. I'll feel more normal. And I'll be on my way to resuming my life. I never lose sight of the fact that I am lucky, and that there are no guarantees - ever. No guarantees with the outcomes of surgery, and no guarantees in life at all.

I'm excited and a bit nervous too. But I'm definitely ready for an improved side view.

At my pre-op appointment with my surgeon, we talked about the placement of the silicone gel implants. I'm going to get shaped implants that are flatter on the top, to help compensate for the way I've expanded. My surgeon told me he thinks I'll be pleased with them and with the final placement, compared to where the tissue expanders sit on my chest.

My last saline fill was July 13, 2015. After each fill, I'd have 3 really sore days, then 3 pain-free days, then I'd head back to the surgeon's office the next day for my next fill. Today is my 13th pain-free day. I'm lucky that I've felt like preparing things and getting things done around the house to prepare for my recovery from surgery. I've spent most of this week trying to do preparations around the house. I've pre-scheduled all of the August household bills to be paid at the appropriate times. I've done all of the laundry. The dishes are done too. I sorted through some of the boxes left over from the move and tossed out some stuff I don't need any longer. I've tried to eliminate some of the clutter that's started to collect around the house. I've done school supply shopping. I even got my hair trimmed and washed today. I've got my anti-bacterial soap to shower with tonight and again in the morning. I don't have any polish on my toes or fingers, as instructed. My pain medication prescription is filled. I think I'm physically ready.

I also took some photos of my tissue expanders so that I can compare them once my swelling is gone. My tissue expanders have ended up being really high on my chest - too high to be natural breasts. They start expanding about an inch below my collar bones. My surgeon has assured me that he's not concerned about correcting the placement in my surgery. I can't wait to see the outcome - with realistic expectations.

Please say a prayer for me, and for my family, as we gear up to go in. I'll keep you updated.

Surgery #3 Pre-Op

Since my tissue expander fills are over, I was hoping I would be able to get through this whole week without any needles, but no such luck. Today was my pre-op appointment at the hospital, and it required blood to be drawn. I'm all set for surgery #3 next week to get rid of my tissue expanders and place my implants. I can't wait!

What is a Mammogram like?

I never spent much time worrying about what a mammogram would be like. I just accepted it as a normal screening that I'd do when my insurance company started to cover it. (Under my plan it's covered at age 40 for women who aren't at high risk.) After my diagnosis, I mentioned to my surgeon that I had started advocating for early mammograms, and he told me that sometimes people who personally know someone who has had a cancer diagnosis become MORE HESITANT to be screened. I hadn't really considered that everyone would look at this differently. It's always challenging to see things through someone else's perspective. So if you haven't had a mammogram screening before, I wanted to tell you what it's like. I'm not a medical professional - just someone who has had to learn about it quickly, as a patient.

I'm absolutely NOT afraid of doctors. I view them as vital. If something is going wrong with me, I want to know as soon as possible so that I can start to fix it. I do annual exams with my gynecologist. I'm not at all afraid of it. I always chalk that up to having a child - once you've been through that experience, modesty goes out the door, and nothing seems awkward or painful at all about an annual exam. I had planned to be just as diligent about mammograms too. I've followed along several breast cancer journeys, and I knew the risks.

Check Yourself Monthly
I always did self exams of my breasts in the shower. They always felt "lumpy" to me, so I wasn't sure I would know what I was looking for if I found something iffy. My doctor always does an exam of my breasts annually as well, and I'd always feel the same way that she does - circular motions, kneading dough motions, etc. I just wasn't sure what I was looking for - until, that is, I found it. In the shower, I noticed what I can only describe as a grape under my skin. I don't know the exact date that I found it, but I did. And, I couldn't stop thinking about it. I knew that I should have it checked out. How did I know?

1. It was new. It had developed and wasn't there before.

2. It was different. It was unlike any other area or bump or inconsistency I had ever felt before. Everything else within my breasts felt similar. If I felt a bumpy area, it was very similar to all the other bumpy areas.

3. It didn't go away. Breasts can change with our normal female cycles throughout the month. Sometimes breasts are tender and sore, and other times everything feels just fine. This place was always there; after I noticed it - it never went away.

Now, there are many things to look for with breast changes. Sometimes it's an indentation in the breast or an inversion. It could feel harder, feel like a lump, look like a dimple, etc. I found one illustration that shows 12 different signs of breast cancer that you should be looking for. But to best summarize it: you're looking for something that is DIFFERENT than before. Become familiar with how your breasts feel, and look for anything that is a change. Talk to your doctor if you have any questions, or if you notice anything. Don't be afraid. The sooner you find it, the better your outcome could be.

I've also learned that sometimes these things can't be detected by touch. Sometimes they are there, they are small, and they are bad news. That's why I can't imagine NOT wanting to be screened. If something nasty and deadly is lurking, I want to eradicate it. I hope you won't be afraid either.

After I found the lump and talked to my doctor, she set up a mammogram for me. The appointment was excrutiatingly FAR away from the date that I scheduled it. So I kept calling back to see if there were any cancellations. I finally got lucky, and got one - and got in 5 days sooner. That was important to me. By the time my original appointment rolled around, I already had the cancerous growth out of my body. Be your own advocate. Don't hesitate. Don't be afraid or timid.

I walked into my mammogram knowing that I had this lump that needed to be checked out, so I had a diagnostic mammogram. The technician took many images of the one spot in questions, from different angles, because we knew the spot was there. I wasn't intimidated at all. I wanted those images, and I wanted to deal with whatever it was. Was it uncomfortable? Yes. A little. Was it weird to have my breasts tightly pressed between plastic for photos of them? Yes. It was. But I simply did not care, because I had to know what I was dealing with. The technician told me to let her know if she was pressing too tightly on my breasts. I let her clamp it down as much as she wanted to, because I wanted the best possible images. I wouldn't describe it as painful, just really uncomfortable. But it was only until she could get the image, and then it was released.

I wore a shirt-like gown in place of my shirt. I removed it for the images. The nurse placed stickers on my nipples and on any place on my skin that was raised, so that it would be noted on the images. She also put stickers near the questionable area, since we knew about it. Then she walked me through each step. She told me where to stand and where to put my hands. She positioned my body into the machine and then told me to let her know if it was too much pressure. It wasn't for me. She took many images, and in 15 minutes or so, it was over. She told me she'd take the images to the radiologist to review and they'd let me know if I needed to do anything else.

So I waited in my gown-like shirt.

They did ultrasound images next. A new technician came to get me and we did that. It was very much like the procedure when you are looking for a baby, and I have been through that before, so this was easy. The technician used the cold gel on my breast, and took several images. When she was done, she told me either she, or the radiologist would talk with me about the findings. After several minutes she came back in and told me the radiologist would talk with me, and that I could get my shirt back on. I walked into the area where the radiologist sits to review images on a screen. It was dark back there, and there were several nurses lined up to talk with him. When it was my turn, he showed me the tumor. He explained to me that it wasn't fluid-filled, and that it had a blood supply. Ick! I saw both the mammogram images and the ultrasound ones. He recommended a biopsy as a next step, but the nurse said she'd also set me up for a consult with a surgeon. I wasn't sure why, but I went with it.

I met my surgeon the next day, and he set me up for surgery - a lumpectomy - the very next day after that. He explained to me my options regarding a needle biopsy or a lumpectomy. Getting rid of the thing sounded preferable to me from the very beginning. He told me I wouldn't have to feel it, or explain it to a doctor in every mammogram for the rest of my life if we just got rid of it, and that we wouldn't be messing around if it turned out to be something nasty. I'm very thankful that I listened to my gut on that one. And, I was super grateful that my surgeon's schedule was able to match my sense of urgency. I thought it would take days or weeks to be scheduled. When he said he could do it the next day, I breathed a sigh of relief.

I'm super grateful for my mammogram. It was able to rule out that I wasn't dealing with a cyst, and that it was something more serious that should be tested. I can't imagine my life if I had ignored it. I'm 36. What if I had waited four more years until I turn 40 to have a mammogram? I don't want to think about what could have happened if I had left it there for four more years!

I know that many things related to the medical world are scary and uncomfortable. Needles. Blood. Undressing. It sucks. But you know what sucks more? Not having a choice about your treatment plan because too much time has passed. I can deal with anything you throw at me, if it means that I can be healthy and alive longer.

If you have any questions about my experience, don't hesitate to ask! I'm literally an open book about this. :)

Random Things I Did Not Expect

1) I no longer have nipples, but luckily (ugh) those stupid weird, random nipple hairs are still there,  just living in a slightly new address. Thank goodness for that.

2) Sneezing is extremely painful post op. I  am squelching all sneezes indefinitely. 

3) Hot showers are therapeutic. But not too hot due to all of the numb areas. Didn't expect to hold my hands over my chest to test water temp. 

4) I am numb across my chest, under my arms and around the sides of my back. I noticed it when my fiancé was rubbing my back. Putting on deodorant - and shaving under my arms - feels really weird. 

5) No BRAS! I remember how excited I was when I got on the school bus the first day of the new school year in like 5th grade and told my bus friend that I "had to" start wearing a (training) bra. I didn't expect that I would have that same ecstatic - but opposite - feeling at age 36. I don't have to wear a bra unless I just want to! Yippee!

6) It absolutely IS possible to sleep on my back with lots of pillows. In fact I can now go to sleep quite easily. I didn't expect that I'd ever be able to sleep on my back. I hated it before my surgeries. But, I haven't slept on my side or stomach since May 31.

7) I didn't expect to feel guilty about my diagnosis, but every time that I walk into the oncology center, I feel awful. I feel so guilty that I had options. I didn't have to go through chemotherapy or radiation treatments. I feel guilty sharing my story, because there are so many others who have had it so much worse.

8) I take people up on their offers to help me or bring me things. It's not a sign of weakness at all - it's letting others show you their love and helping you. Don't turn it down.

9) I didn't think that I would second guess everything I've ever done in an effort to try to prevent a recurrence. I didn't think I'd blame myself and start thinking through how I identify and eliminate all of the things that are potentially causing me (and my family) harm.

10) I didn't expect to feel blessed after going through this. I'm so lucky. I have been given a second chance. I saw my life flash before my eyes, and I imagined what it would be like if I couldn't experience all of the things that I want to experience. I am so lucky that I get to adjust my approach and live every moment to the fullest. Tomorrow is never promised, and I'll approach life that way. I didn't expect to feel so blessed.