49yr Old, 2 Grown Kids, 5'3" 126lbs, ILC Cancer - Really??? - St. Louis, MO

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So, to start with, I was diagnosed with ILC breast...

So, to start with, I was diagnosed with ILC breast cancer in my left breast on November 2nd. I had my annual mammogram performed a few weeks prior and the radiologist saw something a bit different from my last exam. We did an ultrasound which showed nothing conclusive so an aspiration or biopsy was next. We (husband and I) had been through some similar situation and had always found that these were just cysts and were drained via the aspiration. We expected nothing less since we had no history of breast cancer in my family. Well, the cyst I could feel was drained and the fluid was clear! Yeah! Or so I thought. There was another behind it that I did not feel and that did not drain so they did a biopsy.

We got the call on a Monday night at 6:00. Yes, it was cancer! Complete and utter disbelief. Shock? Yes. The phone call did not making sense. We were sure there was a mistake made. I didn't feel sick, had no history of cancer, couldn't feel anything and heck, I was getting on a plane in 3 days to celebrate our 25th anniversary in St. Martin. The nurse who called knew we were leaving so she lied to me earlier in the day when I called to see if she had the results back yet.

This nurse became my "breast navigator" at Mercy Health in St. Louis. And she was/is a remarkable person. She told me the lie because she was busy setting up an immediate appointment with a breast surgeon as well as getting me an MRI scheduled. She did all of these things prior to telling me about the cancer because she wanted to get me some information prior to our trip. She explained what ILC breast cancer is, told me it was 1.3 centimeters and was stage 1. She then told me I had an appointment the next morning with Dr. Lindy Hruska. Whoa! Good thing she had her head on straight because I/we didn't.

So, met with Lindy and she was fantastic. Never felt rushed by her and immediately felt her compassion. She told us many things but most importantly she recommended a plastic surgeon through my husbands diligent questioning. She had a handful of recommendations that she gave to my husband. He then asked her "okay, so this is happening to you Doctor. Which ones do you kick off the island". She blushed a little and laughingly said to not put her on the spot like that. My husband countered with the fact that we were on the spot. She gave us a name! Then, she told us that if we cared to sit around St. Louis and feel anxious, scared, and depressed but that it would probably be better if we did that in St. Martin. Anniversary trip is still a go. She said it would be at least 3-4 weeks until a surgery, either a lumpectomy or mastectomy (our choice) would be performed. On our way out of the hospital, we stopped at the remote office of the plastic surgeon she suggested and made an appointment for after we returned form our trip just in case we elected to do the mastectomy. She gave us lots of information to take with us on our trip. Next day we did the MRI. The following day, we got on the plane.

We had lots of emotional times on our trip but we also had a lot of information to discuss thanks to the immediate action of our breast navigator. Ultimately we decided these boobs needed to go away. They served their purpose well. Breastfed both of my boys when they were babies but now they are only here to look good. And, although I still think they looked okay, I didn't need them trying to kill me. So, we decided to go with a double mastectomy with 2-step reconstruction using tissue expanders.

Whew! That's how it all began. I'll be back with the surgery info later.

Vacation ended, time to get to work

We came back from St. Martin on a Sunday night and met with Dr. Curtis first thing Monday morning. Since we decided to take the double mastectomy route, he gave us the run through as to what the process was on the day of surgery, the subsequent fills afterwards, the final replacement of a permanent implant, and an overall time frame. We decided to discuss what to do about nipples later. I'm not a candidate for any type of flap surgery so no need to discuss that here.

Again, this doctor sat with us the whole time, never seemed to be in a hurry to see someone else and we felt and immediate sense that this guy cares for people. He answered whatever questions we had. I told him I wanted to look like I do in my Victoria's Secret miracle bra. He said "we can do that". I asked him to make me pretty. With a smile followed by a hug, he ensured me he would do his very best to make that happen. We visited our breast surgeon one more time for clarification on a few things we discussed earlier plus asked a few new questions we had since we began a crash course in researching breast cancers. Dr. Lindy Hruska is a champ. She answered them all. She also said she would begin working with Dr. Curtis and get us a firm surgery date. Then she gave me a hug.

Ok, so here is what I had going into all of this. Not bad for 49 years old. They got plenty of sun on vacation also. Back later with the surgery info.

Surgery and hospital stay

December 21st rolled up pretty quickly. We celebrated Christmas the day before and my husband and I, now both ex-smokers for over 3 weeks, headed to the hospital. We had to be there 4 hours prior in order to have nuclear medicine inject me with the die that would detect the Sentinel lymph node during surgery. Remarkable science really. Got to see the real time images of the radioactive die coarse get through my chest. Then, back to waiting room with family and friend. Dr. Curtis came in to mark up where he wants the breast surgeon to make the cuts he has predetermined. Yes, I will be losing all of my breast tissue but can now actually see the football shapes of the incisions that will remove my nipples and areola. Lord, keep me strong! It's real but I am at peace. I came in more spiritually fit than any other point in my life and put all of this into His hands.

Breast surgeon enters and puts family at ease. She is so quietly confident without an ounce of cockiness. She says "Let's get this gone!". Anesthesia arrives, we pray, the IV is loaded with sleepy solution, I get groggy and saw so long to family as they head to the waiting room. My husband kisses me twice - once for him and once for all of our friends wishing me the best. That is the last thing I remember.

I wake to a very fuzzy head. Not really in pain as the morphine and other meds successfully mask that. I am very unsteady as I get up, with assistance, to use the bathroom. I look down and the floor spins. A nurse then tells me - "don't look down again!". This I remember through the fog of the next 24 hours. I do not remember getting sick after having a small amount of soup that evening.

Early the next morning, Dr. Curtis comes in to check on me. Head is a bit clearer and he removes the surgical bra and gauze. I see my chest for the first time. I wasn't aghast at all and I suggest anyone anticipating this surgery to ask to see photos of other patients that your PS should have. DON'T Search the web. Seems only the worst results are shown there. I am tired already by the time he finishes putting the bra back together. He says I can stay another day if I feel the need to. Hey, free rent and food? We decide to stay right then and there.

I'm pretty loopy from all the pain meds and other drugs. I'm transition from IV morphine to oral hydrocodone. Valium helps with muscle relaxation and together with the pain meds makes me silly. I repeat things over and over is what my husband says. Maybe he is just teasing me. I wouldn't know. Eat, sleep, eat, sleep. Family and friends for a few minutes and then more sleep. Breast surgeon. Dr. Lindy Hruska, stops by. I am not under her care anymore but she stops in anyway. Who does that kind of thing? Many people at Mercy do as I come to find out. Great people and great compassion. Day passes to night and then day again. I am cleared to go home now. Yes!!!

Home For Christmas

I'm blessed. We are blessed. My husband set up a Facebook page in order to let everyone know, including family, how I was doing and what was going on. We even had people posting notices that they would be bring over food on certain days and a schedule was developed to feed us all. Gratefully, our sons are both home from college and being well fed while mom is down and out. My drains are checked, measured, and recorded twice a day by my husband. The first few days were mostly sleep and rest. Hydrocodone with an antinausea medication along with antibiotics, Valium, and an anti inflammatory are my meds. Stay ahead of things and take them as prescribed at specific times and you will be comfortable. My husband kept me on a strict schedule, even getting up at 1 and 5 in the morning to keep the ship running tight.

Christmas came and all went very well. I settled in on the couch fading in and out with just my husband and our sons. I did have one visitor but it was secretly arranged. The look on his face when the doorbell rang at 10am was priceless! He created Facebook page to keep friends and family from just "stopping by". We had a cooler on the front porch for people to drop off food and he placed a large notice on the door to not ring the doorbell. Ha ha! Got him good. I had an old Victrola completely restored for him. He opened the door prepared to tell someone off and there stood our good friend with the present in the bed of his truck! Merry Christmas my love!

So, much the same happened for the next few days. Oh, he did have a group of friends come over to sing me Christmas carols on the 26th. It was raining and cold so he hung lights in the garage and they all snuck in. My son, in on the surprise, called me into the kitchen and then asked me to follow him to the garage where about 16 dark silhouette's under a green to red color changing rope light illuminated them. Told you how blessed I was?

Okay, now I'm scared!

On Monday the 4th of January, I had my first fill scheduled. I also was well below the threshold to have the drains removed from my chest. I had done some reading on these subjects and many people reported the fills as being uncomfortable but the drain removal being very painful. I broke down in the car ride to the PS's office. My husband reminded me that some people do have pain, but others do not. He's my best friend.

We met with Erika, Dr. Curtis's assistant, and I told her my fears. She said the drains might feel a little uncomfortable coming out but that most people barely feel anything. She said Curtis uses a slightly smaller diameter tube and a different type than most others and it slips out pretty easily. I gritted my teeth and she removed the first one. I hardy felt it at all! Then the other side. It di catch a bit and gave a sharp tinge of pain but then it was out. I had gotten pretty worked up over something that really was not much discomfort at all and was pain free after a few seconds. Now, the first fill.

She marked where the ports are located under my skin with a tiny magnet and a sharpie. I'll post a picture of that in a future post. Most women have about 120cc's put into their implants during the surgery but I was fortunate enough that I already had 180cc's. It all depends on the capabilities of the surgeons and the persons body. So, I felt fortunate about that. Then, she inserts a needle into the port and pushed 60cc's of saline in my left expander. Didn't feel much other than a bit of increased pressure. Then, she did the other side. Same result. Pretty wild really. I know had the boobs of a young girl going through puberty. And I'm quite thrilled about it!

We had already weaned off of the hydrocodone a few days prior but my husband's cousin, who had gone through this same process just about a year ago, suggested I take one before the fill. I suppose that help. I also stayed on the Valium to relax the muscles and avoid spasms. This all went well and we scheduled the next fill for the following Monday. I'm going to try and push through this quicker than most. The week went well with me sleeping on my back at night with pillows on both sides to keep me from wanting to roll over. I miss spooning but sleep pretty well.

Fill #2 and some good news

Now I have some tiny boobs sans nipples but I can look at myself on the mirror and am okay with it. My scars look fairly straight and not terribly raised. I bought some inexpensive Danskin front zippered sports bras at Walmart for $10 each and they work perfectly. Ladies, prepare yourselves in advance. See what other women look like after a mastectomy. Save yourself from the initial shock. Be prepared.

I failed to mention that when I met with Dr. Hruska over a week ago, she walked in and said "hello Mrs I-had-8-lymph-nodes-removed-and-none-show-any-signs-of-cancer lady! Who hoo! My odds of having to do radiation just about went to nil and chemo was significantly reduced. I meet with the oncologist next week as well as get my genetic test results back. Hurdle. Over.

Not cocky but confident, I head with hubby to my second fill appointment. Erika sticks me, fills me, and we are finished in less than 15 minutes after chatting for 10 of them. I took a hydrocodone before the appointment. I felt this one a bit more. I felt the pressure increase in my chest but the pain is tolerable and somewhat masked by the meds.

Later that evening, I could feel my sides hurting a bit and below my left breast. 3 Advils got me through that. The next morning was much more difficult. I felt tight and sore. So began the full daily allotment of Advil over the course of the next 48 hours. I scheduled my next fill for the following Monday. I will push through this as fast as allowable!

300 to 360 OMG!

On January 11th, I returned to see Erika at Dr. Curtis's office. The soreness from my last fill which brought me to 300cc's had not entirely left but I had not taken any Advil for the last few days. Just figured I would do my best to muddle through this and push forward. I did take my hydrocodone before arriving as has become my ritual. The little magnet thingy found my port and Erika proceeded to fill.

Wow! Much more pressure this time. I could feel the tightening occurring. My husband commented that it just looks painful now. I did not feel the pain so much but that was due to the medicine working.

By the time I got home, the muscles starting talking back. By nighttime, they were screaming. I dosed up on Advils and with a cry and a talk to my husband, I recent erred myself on "why" I am going through this. I also remembered how very, very fortunate my fate is versus so many others. I slept.

The next two days were very difficult. I had finally broke down really. I was in much pain and kept losing sight of my faith in God. I was inside my head way, way too much. On Thursday I had had enough. I called the Pratt Cancer Center at Mercy Hospital and made an appointment to talk to a psychologist. I've always been one to use resources to make my life, work, and faith better so why not use one of the many that are offered to cancer patients? I made an appointment for next Tuesday. I also decided to take another full week until getting my fourth fill. These suck!!! Here's me immediately after 360cc fill and before the sh$t hit the fan. Scars were looking better though! Silver linings.

Ready for 420

Taking the extra week between fills was a much needed break. I got myself recent centered and refocused on what's still ahead. Also, I meet with Dr. Curtis to discuss how things are going and where we are headed. I took my hydrocodone and off we went.

Erika gave me 60ccs in each side and the pressure built steadily. I knew it and was prepared. Doc entered the room and we talked about how many more fills I should do to achieve my desired goals. We also talked about the time frame for completing everything. Once I reach my desired fill size, he wants 4 weeks before the outpatient surgery to remove the expanders and place the permanent implants.

As far as nipples and areola goes, I'm pretty certain I am going to have him make me some nipples and tattoo the rest. In full disclosure, my husband and I both want the feel of a nipple. Nothing huge, just something for him to play with. And I do enjoy a nude or topless beach occasionally. I'm not letting cancer win anything!

Here are pics of the magnet used during fills and a video of me getting a fill. Scars looking good! Cocoa butter and vitamin E, two times each per day.

Only one more to go

February 8th - I decided to push myself and get to the end of these fills asap. Today is my 5th fill in 6 weeks. Figured if I was going to be miserable, I might as well do it in a hurry. Husband and I talked it all out. Get a fill today and the last one next week before getting back to work on March 7th. Being self employed and running my own gymnastics business, I can afford to do things more on my terms than on cancers terms! I praise the women who return to work so promptly after a mastectomy and the subsequent tissue expansions. You have my respect and admiration.

Sitting now at 480ccs. Scars are healing very well and my mental and spiritual wellness is firm again. I can see the end is nearing for this portion of my reconstruction. Speaking of firm - I could hammer a nail with these titties! They are hard as a softball. Barely any give when I hit something. Like a bumper on an old car. I just bang into things and get pushed backwards. My husband has been a victim of my erratic bumping on several occasions. I may have bruised him!

The tank is full!

On February 16th, I achieved maximum density! For me at least. I am at 540cc's and look like a Fembot from the Austin Powers movies. These babies are shooting straight out and are about as soft as a toaster! But, I have this feat accomplished. Now I wait 6 weeks until I have the swap out surgery.

I will be going with 550cc Inspira round high profile silicon implants. I chose this these after man conversations with my husband and our plastic surgeon. But, I also had many conversations with Erika, who is our nurse at my plastic surgeons office. Erika has done every one of my fills and I value her opinion as a professional who has seen many others go through this process. That and the fact that she is a kind, considerate, and compassionate woman led me to a decision I felt comfort with. So, like that!

38 hours

That's about how long it will be until I get these stupid cement globs (not globes) out of my skin! Expanders are a medical marvel, no doubt. But they are a menace and so, um, EVIL! They have served a glorious purpose and I am fortunate to even have the opportunity for reconstruction due to their function and performance. With all those praises said, it is now time to get the Hell outta here!

Anxious, nervous, and excited to get the silicone implant exchange surgery on Thursday morning. I pray for good results. I hope for excellent shape, size, and comfort. I want sexy back. I want au naturale sunbathing in the Caribbean again. There's a big difference between what I pray for and what I hope for. The more those two things overlap, the better. But most importantly, I am here and cancer free. Will update soon after the swap.

+52 hours

First shower since the exchange surgery and it was a good one. Surgery was finished at 10:00 on Thursday so it's been just over 52 hours. I was expanded like a piñata out to 540cc's and had those curling stones taken out and replaced with Allergan Natrelle Inspira SRX-545cc silicone in both breasts. All went well and I am resting without a great deal of discomfort. Taking Valium and Hydrocodone until I feel like tapering down. It's my call.

Had a quick look at 'em yesterday but not too long. My husband helped me in the shower today and put me all back together with the gauze and surgical bra after a nice warm soapy soak down. He said that he thought the shape had changed a bit since yesterday. When I took a better, longer look, I felt the same way. There is still a lot of swelling and I would assume some settling still to come for a few weeks? Anyway, all is good for today and that is all I can hope for at the moment. I've attached a few pic. The wrinkles are from the compression of bunched up surgical gauze against my skin from the tight surgical bra the last 52 hours.

Bonus! I can shave my underarms by myself! This set of boobs is not in my armpit. Hopefully will drop and fluff a bit more also.

Sunday - 10th day post-op

Not a bunch to say today. Feeling a little melancholy. Not so much about the exchange surgery. Just, well, everything. My 22 year old son is just sort of in limbo right now. Part time student, part time employed, full time not sure what he wants to do with his life. Husband is Mr. Cranky. I'm just in a post cancer funk again. Who knows. Maybe it's the crappy weather. Whatever it is, I know I'll break out of it. Just gotta find the next right wave to get on and ride.

Anyway, here's the latest pics. Hard to tell much has changed. Some upper swelling has reduced and the squishy sound is almost gone completely. Follow up appointment with surgeon early tomorrow morning. Hope there is more dropping and settling. Things look a bit square on my right side especially.

5 weeks post exchange

Well, here we are. Getting some things back to normal while others are slowly becoming "new" normals. I am able to lay on my side a bit more. Still using a few small pillows for support but I can spoon my husband for a little while before my side boob starts hurting. Progress being made.

It's hard for me to tell what, if any, changes have been made regarding the "drop" of my implants. They have definitely gotten softer and are moving a bit more. But I still haven't seen much in the way of dropping to create a more natural slope. Come on gravity! Never works when you want it to! Some sites and comments say changes can occur for several more months. Patience shall be my game. Plus, I have a follow up appointment with the PS next Wednesday.

And here are today's pics. Scars healing nicely. Lots of vitamin E and coconut oil. Three times a day, alternating each. I also massage the scar each time. Stay true to your doctors advice. With that said, the man and I are off for four days of true camping. No RV or camping trailer for this girl (yet - though we've been looking off and on for a few years). We just like it old school in a tent. We do however have an inflatable Serta Queen mattress that is ridiculously comfortable. I mean, it's nearly as nice as the bed we have at home. I'm ready for this trip finally. God bless you who have been on this journey with me. We can do it. Strength in numbers!


Well, I've spent the last year tending to the scars (coconut oil and vitamin E oil, rotating usage twice a day) and also the scar tissue (silicone strips). I've also research extensively what to do about some nipples. Spoke to a few people who had nipple reconstruction and were not terribly impressed with the results. All had some degree of flattening out. Also went and met with a guy who will tatto your nipple and then implant a tiny threaded socked su dermal that you can screw a nipple onto. Pretty unique actually. If you want high beams on, you screw a large nipple into place. Chilling at home with company, screw in a slightly raised nipple. Could probably even get a barbell into one of these prosthetic nips if you wanted to get a little modern. In the end, I didn't feel that was the way for me. I started checking into 3D tattoo artists and went to meet some.

Husband found a local lady who was written about in the St. Louis Post Dispatch for the work she does with breast cancer mastectomy patients. We made a date to go see her at the tattoo studio. We connected pretty quickly. Saw a lot of her work from a Facebook page and a photo album she keeps. I'd been eyeballing several tattoos on women both with and without reconstructive tats and came up with an idea I wanted to share with this artist. She was remarkably receptive to the idea. Excited actually. We looked at some id as I found on the web and traded texts for a few days before I decided, for myself, that I wanted something unique and beautiful.

I set an appointment and arrived with my husband at the studio to review the examples that Kerry had drawn up from our conversations. I wanted to incorporate a W (which stands for warrior) and a butterfly into my tattoo but gave this extraordinary artist the freedom to design the piece herself. She showed my the drafts she crafted and I was absolutlely certain that I made the correct choice. We made one, very small design change and got to work. In three hours, the piece was complete and I looked at my uniqueness in the mirror. I broke into tears of utter joy and the anxiety I'd been carrying for many, many months left my soul. My husband was astounded and so full of pride for me. I/we had done it. I wanted to show the world! I settled for a few loving girlfriends who have been alongside me the last 18 months.

No one on this whole wide terrestrial world I call home has boobs like mine. No one at all. I share my journey and experience with anyone in need but this part is mine and mine alone. I love it and would recommend it a thousand times over. This is me. This is how I conquered and became the warrior God showed me how to be. This is my badass body!
Dr. Michael Curtis

Dr. Michael S. Curtis of Mercy health has been nothing short of extraordinary for me and my breast cancer reconstruction. A wonderful first impression led to a few very comfortable meetings prior to surgery. You have to be comfortable with your entire "team" of surgeons, techs, assistants, oncologists, etc.. I am blessed to say I have confidence in all of them at Mercy. They have been outstanding.

5 out of 5 stars Overall rating
5 out of 5 stars Doctor's bedside manner
5 out of 5 stars Answered my questions
5 out of 5 stars After care follow-up
5 out of 5 stars Time spent with me
5 out of 5 stars Phone or email responsiveness
5 out of 5 stars Staff professionalism & courtesy
5 out of 5 stars Payment process
5 out of 5 stars Wait times
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