I want my normal life back!

I've tried to just get my life back to normal since breast cancer. For the most part it is. But there is this one lingering thing that is a pretty frequent reminder of all that has happened.

If you don't want to hear about my sex life stop reading now!

We still have no birth control!  Back in November I had to have my birth control removed because of the hormones. My options are very limited because I can't use anything with hormones. At that point Bill made an appointment for a consultation about a vasectomy. We thought the 4 weeks we had to wait for that appointment was the end of the world. Little did we know.

His appointment was a few days before my implant exchange surgery. He was told my "this bitch of a doctor" that they wouldn't even consider a vasectomy because of the heart medicine he is on (Plavix & aspirin). We were very upset. I call my doctor the same day to talk about my limited options. I get an appointment for 6 weeks away (end of January).

That appointment was two weeks ago. My options are limited to two. Have my tubes tied or the Paraguard IUD. Doctor recommended having my tubes tied. After all, Bill and I never planned to have other kids. I didn't want to have surgery, not matter how minor. So I say I want to try the IUD. Apparently it has to be put in when you have your period.  And this is where fate steps in to crap all over me.  I haven't gotten my period.  Which I knew was a possible side effect of the tamoxifen but I just figured it wouldn't happen this fast.  I'm so bummed out.  This impacts our life every week. Condoms are awful!  I just want to move on and to do that I need reliable birth control!!  Argh stupid cancer!

To wrap this up on a happier note I'll throw in some cute pictures.
Last weekend we had everyone over for my mom's birthday and apparently scooter cars are fun when you're 10 and 13 too!

Cassidy likes to sit in a big girl chair to eat now. Her highchair is for babies and stuffed animals only. She can reach into our drawers and gets bowls and silverware for the dolls to eat from!

Cassidy is great at sharing. Jake always wanted a Maraca!  and when she put it there she said "Here you go Jake". Very cute!

We all have animal hats!

She still loves to read books but its been awhile since we've had to read every single on in the house in one day. But now she likes to read the same one over and over. Or in her words "Again Again".

I'm back

Wow did I miss my computer! After having it re-built, it’s like getting a new computer. Things aren’t set up the way you like and it takes time to get everything back to normal. Time I haven’t had as we’ve still been working on our little house project (pictures next week perhaps).

It’s busy but all good. Cassidy is really talking up a storm and parroting everything we say (time to watch our swear words!). She refuses to sit in her booster seat and wants to eat dinner in the big girl chair. She wants to eat cereal with milk (no more oatmeal for her!). She wants to watch Dora the Explorer and tells us so by yelling at the TV. She’s adorable!

Health wise I’m great! I’m working out again, which makes me so happy! I’ve been on my anti-cancer recurrence medicine for a whole month and (knock-on-wood) have experienced NO side effects!! Woohoo! 4 years and 11 months more to go!

At the end of last year Bill and I booked ourselves a little vacation to Bermuda. Just the grown-ups! Less than 3 months until we go and I can’t wait! I think the anticipation of a vacation is almost as good as the vacation itself.

What causes cancer?

When I came back to work after my first surgery, someone who knew of my diagnosis asked me if the doctors told me what caused my cancer?  I’m sure I answered with a tone of “are you f’ing stupid?” but the words I said were “the doctor said the medical community is light years away from knowing what causes any one individual to get cancer”. Which is actually what he said. Even though I hadn’t asked because…  I’ve never been under the impression that I would ever learn HOW I got cancer.

It peaked my interest that the Winter 2011 edition of Cure magazine has on the cover, “What Caused My Cancer? (The answer may be more complicated than you think)”. We got a good laugh about this at support group because we always thought it was a very complicated! However I was inclined to read the article and it began:

“Today, the list of possible environmental carcinogens reads like a catalog of modern conveniences, including cell phones, plastic bottles, styrene in Styrofoam, imported drywall, high-voltage power lines, light at night. Other environmental causes of cancer may be rooted in lifestyle factors, such as obesity, drinking alcohol, a fondness for suntans and smoking, or infections with viruses and bacteria. In fact, knowing all the ways the environment can conspire to fuel cancer growth, perhaps the real wonder is how so many people can remain cancer-free for so long.”

“Even the most wicked environmental carcinogens must still find an accomplice within a person’s own DNA. After all, for reasons no one knows, the vast majority of smokers do not get lung cancer.”

The article was very interesting and confirmed what I always suspected. The cause of cancer is very complex.  If it was simple we would’ve found a way to prevent it years ago!

Post - Operative doctors appointment update

I had my post-op visit with the plastic surgeon today.  She said there is some swelling, which is to be expected and in 2 to 3 weeks things will look more like they are going to look in the future.  She said they will drop down a little bit (basically I look like I have a permanent push-up bra on!). She thinks they are going to look great!

There's one spot that I thought were stitches poking out and she said yes, they are stitches but they'll dissolve. In the same area there's a red splotchy area which landed me with five more days of antibiotics. She said it's probably nothing to worry about but better safe than sorry.

She agreed with me that darn righty is again leaning towards my armpit. She explained that the stitches they put in my muscles to hold righty more centered are permanent stitches so they should hold. As another precaution, my lifting restriction (no more than ten pounds) will remain until January 10th!  Also, while I don't have to wear the ugly Velcro bra and can wear one of my own, she wants me to pad under my right armpit to push my breast more towards the middle and take the pressure off those stitches so they can heal. She thinks once everything droops a little I'll look more even.

Some good news, starting next week I can do low impact workouts and its okay to sleep on my side (yahoo!).  I don't have to go back for two months so I have my list of instructions until then (lifting restrictions, massage instructions etc).  I feel like I have one more step done. One more step back to my normal life!

Exchange surgery yesterday

According to the plastic surgeon, yesterday’s surgery went well.  Bill and I got there a little late due to traffic. So I didn’t have to wait when I got there, in fact they had called my cell. I got into my johnny and the surgeons came by before the nurse had even covered me with my warm blanket. By the time they got the IV in I’d talked to anesthesia and Bill had been back with me for like 4 minutes and we were saying “see you later” and I was off to surgery early.

The anesthesiologist did a great job and I woke up in recover not nauseous at all. What a difference that makes. We were heading home by 2:30!

Last week we had decided on 450cc implants based on thinking there was 460cc’s in my expanders. During surgery they realized there was more than 460cc’s. We’d discussed if there was a question to go bigger, not smaller. So I have the biggest implants possible for my chest size – 500cc’s!  And even swollen they don’t seem too big so we’ll see. 

Last week we also discussed how my right boob had moved down and towards my armpit and was far from symmetrical. So I knew they were going to do a lot of deep tissue stitches to move righty back where she belongs. And that is what is pretty painful. If it wasn’t for that I’d just take Advil. My left side is a little sore but really feels fine. The right is very painful to move my arm or lift anything. So I’ll have longer than predicted lifting restrictions due to that but I’ll do whatever it takes for it to stay in place. I’m looking forward to not ever wearing a bra again!

Picture with Santa

Yesterday Bill and I went Christmas shopping. We did our Toys-R-Us run and we let Santa know what Cassidy wanted. My parents watched Cassidy while we shopped and then we all met at a restaurant for dinner. During which Cassidy was a total spaz and didn't eat a bit!

During our shopping we had purchased a really cute sweater dress for Cassidy to wear on Christmas.  Today, we thought we'd dress her up and go have her picture taken with Santa. We talked about it a bunch of times. She kept saying "yeah", she wanted to see Santa.  She probably did want to see him, but she didn't want to sit with him. She immediately got the big pouty lip and started crying! 

Our house is all decked out for Christmas!

Jake is got a bath yesterday. He's so soft!

The little reindeer has a scarf with pockets.

Not sure what she's looking for but she checks

the pockets regularly.

My Christmas shopping is all done!  I'm hoping to finish wrapping gifts, run some errands, clean the house and take Jake for a nail trim tomorrow. Oh yeah, and I have to work too.  Surgery on Tuesday so I want to get lots done so I can focus on healing the rest of the week. Busy time of year to be having surgery but new boobs will hopefully be a great Christmas gift!

You've got to trust a plastic surgeon

Yesterday we had our pre-surgical meeting with the plastic surgeon to discuss details for next weeks exchange surgery. I'm exchanging my coconut like tissue expander's for soft squishy implants.  We discussed the size I want to be which is,  the same as I was naturally or slightly bigger, no smaller (your welcome Bill).

I never thought I had big boobs. Yes, bigger than most of my family but they had small boobs and I figured I was normally sized. But in figuring out what size implants I need to get me back where I used to be I realized, I had big boobs for a person with a puny 13 inch chest.  My tissue expander's are actually larger than my body so I have significant side-boob which I can't wait to be gone!  We had to find implants that could fit on a 13 inch chest but would still be as big as I want. Enter the high profile implant which is specifically for thin women who want big boobs! 

We also discussed how they look now. The right one is not looking good. It sags down and off to my armpit. The doctor said she'd lift that one so there would be deeper stitches and more resting that side.  I think the left looks good.  Apparently the doctor is a perfectionist because she thinks near my cleavage there's a flat spot (?) so she's going to fix that too.

I think if you need to have someone build you new boobs a perfectionist is the way to go.

Finally we squeezed an implant and we were shocked.  When you read online about the new silicon gummy implants they are described as like a gummy bear.  Meaning you can cut it in half and nothing leaks, it's cohesive.  So I expected it to be, kind of firm feeling. It wasn't, it was SO soft. I can't wait to get those in me and get these awful things out! Now I'm excited.

The one piece of bad news is I have to go back to sleeping on my back for a month to 6 weeks :-(   Just thinking about it last night made me restless. I'll be picking up some Advil PM this weekend.

Back to work

It was a hectic week.  I wish I had a massage or something relaxing planned for this weekend because I need it. oh wait, I can't get a massage because I can't lay on my stomach. insert big pathetic sigh :-(

Wednesday I had two doctors appointments that went fine. Got the all clear from the breast surgeon and I never need to see her again. Another 80 cc's in my expander's from the plastic surgeon and I won't need any more fills.  Bill surprised me by taking that afternoon off and we went out for lunch in Boston. It was a beautiful sunny day so that was nice.

Thursday I went back to work. I figured I could handle it for one day. Get through my email and catch up a little.  I hadn't told many people why I was going to be out. I had decided that if I needed chemo and lost my hair everyone would find out but since I didn't know when I left what would happen on that score I didn't broadcast why I would be out of the office. Lots of people asked me if I was okay.  I, of course, responded with an "I'm great!". No one asked me why I'd been out and I didn't volunteer any information.

This morning I went to have my birth control implant removed. My arm is still a little numb but I have a feeling it's going to hurt all weekend. The doctor said the bruising would be similar to having it put in and it was pretty awful then. 

I'm really sad today. In the past few months my life has changed a lot. I realize today is just one more thing on top of more serious things that happened last month but it's like the straw that broke the camels back. Which is not good since I have plenty of more stuff coming up. It's too early for this to be the straw.  It seems so minor. So what, we use other birth control. But it changes things. I'm going to get my period for the first time since 2009. That sounds pretty awful to me. Bill has an appointment next month for a vasectomy which is one more thing to do in December. So much has changed so fast there hasn't been time to process it. If I honestly answered my coworkers question about how I am...  I'm not great.  I'm just okay.

Oncologist

Friday we met with my new Oncologist at Faulkner Hospital. He spent 45 minutes with us and I felt like we had his full attention that entire time. I felt like he tried to get to know me, not just my diagnosis. He is also very nice and came across as very intelligent.

First he asked me lots of questions. Then he examined me which I found… uncomfortable.  I’m not used to the new me and its different showing the breast surgeon or the plastic surgeon. My face was bright red and he commented on it – asking Bill if my complexion is normally like that! Ugh. I said I was hot. I’m pretty sure I fooled no one. Then I got to get dressed (Thank god) and he reviewed my final pathology report of the tissue they removed in detail.

7.3 cm by 3.6 cm of DCIS was found in my tissue (same as my biopsy). That’s a big area.

0.02cm of Invasive Ductal Carcinoma (IDC) was found in the midst of all the DCIS.  Estrogen receptor positive (though not as receptive as the DCIS), Progestin receptor negative and HER positive (this is bad and indicates an aggressive cancer).  This was the bad cancer that can kill you. It was classified as Stage 2.

Lymph nodes were all negative for any cancerous cells.  Surprising to Bill and I was the news that they ended up removing 5 nodes!  2 of the Sentinel nodes (that fed off my breast – these were the ones we wanted to get) and 3 more that were in the path to get to the sentinel nodes so kind of removed for no reason.  It’s important for me to know this because the more nodes removed, the greater my chance of getting Lymphadema in my right arm. I’m hoping I never get that!

But the IDC was the thing to worry about and the Oncologist was very happy that it was only 0.02cm. If it had been 0.04cm’s I would have been put on a short round of Chemotherapy but at 0.02cm he felt that the risks of Chemo are not worth it for such a tiny amount of cancer that has already been cut out.  He said my lifetime risk of recurrence is around 4%.

Our plan to reduce that 4% risk to 1% (or less) is:  I am having my birth control implant removed from my arm and beginning January 1, 2012 I will start taking Tamoxifen.  Tamoxifen is a drug that inhibits the amount of estrogen my body will produce. I would expect to be on it for five years. It is pretty standard for any pre-menopausal women with breast cancer.  The side effects are hot-flashes!  Based on my medical history my oncologist is hopeful that I won’t experience bad side effects. I’m thinking positive that I’ll tolerate this medicine well.  Tamoxifen also has some benefits, one of which is stronger bones. The other is lower cholesterol but I already have low cholesterol.

I feel, so lucky. So lucky that I caught this before that .02 grew to a .04! I am a happy, lucky, healthy chick!

My First Fill and all good news

Today we visited the plastic surgeon. We're going to be regulars there for awhile. We saw Abbie the physicians assistant today and she said I look amazing. A few days ago I had noticed that gravity had started to work and my boobs had moved slightly downward. Now, I'm not saying I could hold a pencil with my boob but I didn't feel like they were at my collarbones anymore. 

So I had my first fill, 80 cc's of saline in each. She chose to stop at 80 because she didn't want to push my incisions. And they are back up to my collarbones again ha ha. She said they'll settle down in a couple weeks - just in time for my second fill!  It felt fine - just everything getting much tighter again. And they are obviously bigger.  I'd say close to my normal size.  My homework is to start trying on my clothes and see if I'm happy where I'm at or how much bigger I need to go to be happy.

I think we got lots of good news. I talked to her about how I'm less than thrilled with how I look. She reassured me that implants won't be as round and they have a style of implant called high profile that might be best for me (more projection). So I'm relieved. She was going to look at my before photos to see if she thought that would give me the "old" me look. She thought it will be no problem to have my expander to implant swap surgery this calendar year so I'm all booked for surgery on December 13th!  Yippee! and OMG I've got to do my Xmas shopping before then ha ha!

Lastly, I've had something sticking out of the incision in my right armpit that has been driving me nuts. I was going to ask Lisa to cut it off Friday night but that won't be necessary because that's already been done. I told Abbie and she took a look and it was a knot of sutures sticking out so she cut it and pulled it out! Thank goodness!

I'm feeling pretty hopeful that I can be happy with the new me.

Good Pathology News

Late Monday the doctor called with the final pathology report. Lymph nodes still clear (phew!). They found a teeny tiny amount of invasive cancer; 2 millimeters or for us Americans who still don't know the metric system,  .07 inches.  TINY! They are setting me up an appointment with an oncologist as standard practice.I asked what she thought the recommendation might be and she said maybe nothing, maybe hormone therapy.  I'm happy to see the oncologist because there is still the question of my (hormonal) birth control implant which is still in my arm.  I suspect I'm going to hear a firm - remove it! but I'll wait until I hear it in person.

If you've done any on-line research on  my diagnosis there are questions on whether DCIS would ever turn invasive. Sometimes it doesn't. It was hard for me to have my entire breast removed for something that may or may not have become invasive. That teeny tiny amount of invasive cancer they found confirms that I did the right thing because my DCIS would have turned invasive.  Not that I'm the type of person to ever regret anything but... I don't ever have to second guess any of my decisions now.

I need to talk to work about when I'm going back but now I have two or three more doctors appointments (oncologist, follow-up with breast surgeon, and then maybe BC Implant removed) so I'm hoping to be able to provide work with a date by the end of this week. It just doesn't make sense to me to go back to work and then have to use my vacation time on doctors appointments.

This past weekend we went to the Franklin Park Zoo. Which we felt was a bit of a rip off since half the animals were gone. It was still a nice day to be outside and enjoying the fall day.

zebras are cool

Bill looks so happy!

None of the pictures have me in them because I still cannot hold my child.  Ten more days!

Monday already

You definitely don't have a good sense of time when you're hopped up and nauseous on pain killers. I was released from the hospital yesterday even though I was still nauseous. I wanted to come home. Last night I said "That's It!" to those darn painkillers that made me itchy, sick to my stomach and dizzy and stopped taking them. It was Tylenol only overnight. Bill and Cassidy are at the pharmacy now picking me up something milder that the doctor called in but I'm doing pretty okay on just Advil (which the Dr. recommended over Tylenol).

The good news was preliminary results on my lymph node was negative! Yippee!  I'll really celebrate when the final results come this week.

The plastic surgeon thought my skin looked so good she put quite a lot of saline in my tissue expanders, 300cc.s - their limit is 500cc's. With that and all the swelling I have some pretty big...   lumps.  Yeah, they look like bumpy lumps. 

The drains are without a doubt the worst part of this. I look like a freak with big bulbs under my shirt.  The one on the left is stitched to my skin right under my super fashionable velcro bra and is the spot that hurts the most on me.  But I can't be too upset because the doctor said it's because I'm skinny that it hurts so much.  I love how they throw that in.  Things hurt more because there's no fat to pad anything.  Like it's a bad thing. haha  

I survived. 

Day before surgery has been pretty relaxing

My mom, Cassidy and I went to Garden in the Woods in Framingham this morning to try to take Cassidy's 18 month picture (my girl is 18 months old!  when did that happen?).  It was chilly! Fall has arrived (for the day at least). While the garden was more just woods at this time of year, we had many good picture taking opportunities.

Cass kept running away from us and Grammie had to chase her down

My Favorite!

We had a really fun time!

I'd have to be totally dead inside not to be nervous about tomorrow but... I think I'm doing okay. Last night I talked to an American Cancer Society volunteer with the Reach to Recovery program. They matched me up with someone who had the exact same surgery and reconstruction. It was nice to hear what to expect from someone who went through the same thing. I feel like I know a little better what to expect tomorrow and I know I can handle it. The bottom line is, after tomorrow's surgery, I will still be me. A mom, a wife, a daughter, a sister, a friend, a valued employee, an avid exerciser, a dog-lover and a control freak. Real boobs or fake boobs or the kinda-sorta lumps I’ll have for the next few months doesn’t change who I am. 

Digi scrapbooking supplies from Shabby Shoppe

Pre-op appointments

Today I had two pre-operative appointments. 1st with a nurse who took my blood pressure, medical history and reviewed my instructions for Friday.  I answered like 75 questions about my history with all No's.  At 39 years old I can understand how shocking it is that I've never had a heart attack, stroke, diabetes! I'm healthy. Oh! Except for the cancer in my boob!

2nd appointment was with the breast surgeon’s nurse practitioner.  She explained the surgery to me (didn't I know all that before I made the decision?), showed me how to empty the drains (but the nurses will show me that at the hospital too) and attempted to explain when I'd be able to drive, lift things etc. but almost all her responses were "We defer to the plastic surgeon on that so they'll let you know".   Okay then. Why am I here with you instead of the PS then?  Waste of time!

---

I want to say thanks to all my amazing friends. I have relied on them more, in the past months, than ever before in my life. And they have risen to the challenge. Many kind ears to listen to my poor me attitude and freak outs.  Spa gift certificates, lunches out, a Nook, a pedicure, books, pillows and new shoes (yes, someone bought me shoes) to take my mind off things and help ease the awfulness. I want to say publicly – Thank You! I appreciate you all and will rely on you for awhile longer. I suspect the hardest part is yet to come.

I have to say a special thanks to Bill who certainly has the biggest challenge ahead. Poor Bill.  I’ve held it together pretty well, joking about it occasionally. But Bill got the rawest of my emotions during the last two months. I relied on Bill to hold me through the times I was scared, angry, freaking out and sobbing my heart out.  I married the best guy in the world! 

It’s much easier to face this and stay strong with all of you supporting me. Thank you!

Lots of your friends want to ride with you in the limo, but what you want is someone who will take the bus with you when the limo breaks down.
- Oprah Winfrey

Theshabbyshoppe.com for digi-scrapbook papers

October is Breast Cancer Awareness Month

If you don’t know that October is Breast Cancer Awareness Month you must live in a closet and have someone slip you skinny meals under the door.  Every magazine I’ve read in the last two weeks has articles about breast cancer. How to figure out if you have it, what the risks are, whose had it and how they’re doing.  Commercials on the radio about the Making Strides against breast cancer walk in Boston this weekend. Even the discount kids  site – Zulily – today had kids shirts with the pink ribbon!  I’m happy that it gets lots of attention and I absolutely hope they find a cure – especially since my daughter will be high risk for breast cancer. Next year I’ll be walking and collecting money for research.

But this year I’d like to read a magazine for entertainment and not have it remind me that cancer is growing in my right breast! I think about it enough, I don’t need reminders.

Cassidy is going through an adjustment period with the move to the toddler room at school and the transition to one nap a day. She’s doing great and learning new things but she’s also tired and cranky. Frustrated that she’s talking but we don’t understand her. And the more tired she is the naughtier she is and the more she wants mommy to cuddle with her.  So the further disruption of mommy not being able to pick her up is bad timing. I’m sure we’ll manage but it’s one more thing I’m worrying about.

We don't know how strong we are until being strong is the only choice we have.

-unknown

Finally – Information

Well, it took seven phone calls and messages but I finally have information about appointments, forms etc.  My surgery is at Faulkner hospital in Jamaica Plain.  It’s in the afternoon (boo – not eating makes for a crabby Sheryl!). I have pre-op appointments earlier in the same week as my surgery and the form for my HR department is just waiting a signature and should be in the mail to me soon.

Also, the genetic counselor called with my results and I was negative for the BRCA gene. Which is great news for me and all those girls related to me J

I did some reading about choosing to do a bilateral mastectomy and not too many women regret doing it but quite a few regret not doing it due to having to get MRI’s and mammograms every 6 months to check the natural breast plus issues with symmetry. No matter what it’s a stinky situation and decision.

In the meantime I'm just waiting to have surgery. Which is not a fun thing to be waiting for and dreading all the time but I'm trudging along.

Waiting

I am not a patient person.

I am not good at waiting.

I recognize and acknowledge my faults. But I don’t think it’s unreasonable to want  to know what time I’m having surgery on the 7^th so I can tell my sister what time to watch Cassidy. And where I’m having surgery (Brigham & Womens or Faulkner)?  When and where is my pre-operative appointment that they mentioned to me on the 6^th (“oh we’ll call you back with a date”). Have they filled out my FMLA paperwork so I can get that to HR?

Why won’t anyone call me back when I leave messages on all the phone #’s that go right to voice mail? If I did that at work I wouldn’t have a job (ok, that’s not true but I have a unique work situation where I could probably smoke crack at lunch and not get fired).

I’m getting frustrated and none of this gives me a warm and fuzzy feeling about my surgery and treatment. My mom has been telling people that Dana Farber was so organized and that impressed me because I’m so organized.  Well, that ship has sailed.

Maybe they’re used to dealing with older women who don’t need to set up a babysitter and aren’t busy at work with meetings that its difficult to cancel.  This is really  stressing me out!

MRI photos

Due to a slight mix up I ended up having to go to LC today to pick up a CD of my images (mammogram, ultrasound & MRI). Of course I asked if I'd be able to look at the pictures on my home computer and they said yes.   During my MRI they put contrasting dye in my blood. The results were that the cancer in the breast needs more blood so it takes more dye.  I'm thinking the dye is blue in these pictures.

 The top photo says 9.7 cm on it.  When we met with LC they told me that at it's largest point they thought my cancer was almost 10 cm. I read on a breast cancer website that if the cancer is larger than 5 cm they recommend a mastectomy because a lumpectomy that size would remove so much of the breast that the person would be disfigured.  Mine is double that size! 
I think it might be good that I looked at these because I can see now that something is wrong. Obviously, I can feel that something is wrong all the time but this is more proof.
This sucks!

Reconstruction options

When we met with LC Monday, they didn’t have a plastic surgeon available to meet with us. The general surgeon told us that they offer three types of reconstruction.

1.      An implant.  This would require two surgeries. After the mastectomy they would insert a tissue expander behind the pectoral muscle which would be inflated over a period of 4 to 6 months. After that its outpatient surgery to remove the tissue expander and put in the actual implant. The doctor indicated this was easiest option as the initial surgery would be relatively easy going this route with a short recovery (two weeks). But you have to have a 2^nd surgery it’s probably similar down time added up? Also the 4 to 6 months is dependent on how well you tolerate pain because the tissue expanders hurt.

a.       http://www.breastcancer.org/treatment/surgery/reconstruction/types/implants.jsp

b.      I’m not crazy about having an implant. They don’t last forever, though it’s difficult to figure out how long they do last. 10 to 20 years? So if I live until I’m 90 and they last 15 years, that’s at least two more surgeries. Does insurance cover replacing it years later or will that be on my dime? Also, in January 2011 FDA reported a possible link between both saline and silicone breast implants and a very rare form of lymphoma -- anaplastic large-cell lymphoma (ALCL) -- in the tissue near the implant.

2.      Latissimus Dorsi Flap. They move a muscle from your back and that muscle holds the breast implant. So I’d wake up with a new boob. Longer recovery and scars on back. Also the muscle on your back is gone forever. The doctor said if I was left handed this would be his recommendation but because I’m right handed…  I’d lose strength on that side.  I’m curious to talk to a plastic surgeon about this – how much strength do you lose? How does this really impact you the rest of your life? and still… it’s an implant.

a.       http://www.breastcancer.org/treatment/surgery/reconstruction/types/latdors.jsp

3.      TRAM Flap – They remove an abdominal muscle and fat from the same side (right) and build you a new breast (no implant). I like this idea best because there is no implant but downside is – that abdominal muscle is gone for good.  I’m not sure how that would impact my life in the future. Also a big tummy scar. And I’m not sure if I have enough tummy fat to make a nice C cup.  A plastic surgeon would need to decide so… this might not even be an option for me.

a.       http://www.breastcancer.org/treatment/surgery/reconstruction/types/tram.jsp

So two involve implants, two involve moving muscles from other parts of my body and one, I don’t know is an option for me until I see a plastic surgeon. Now let’s add more decisions.

·         If genetic testing comes back that I am positive for the breast cancer gene – Bill and I agree that I will have a double mastectomy. Then implants will have to be the way to go and I’d probably just do your basic implant as I wouldn’t want my back muscles gone from both sides.

·         The doctor suggested, and I thought he was nuts at the time, that lots of younger women, opt to have a double mastectomy, regardless of the results of genetic testing. They do this to reduce the risk of getting cancer in the remaining breast and to have both breasts be the same (i.e. implants).  While at first this seemed crazy to me… if I can’t have the TRAM and I have to get implants… maybe it doesn’t seem so crazy?

And I'm not even thinking about the nipple reconstruction after all of that!

Big decisions!  And I can barely decide what t-shirt to wear and what to cook for dinner!  I’m hoping that talking with a plastic surgeon will make this easier.  My appointment with Dana Farber is Thursday September 1^st.  We are meeting with a plastic surgeon first at a different location, then the breast surgeon and oncology. I expect we'll make a decision that day on where I'll go for treatment.

This slideshow - kind of scares the crap out of me.

http://www.health.com/health/gallery/0,,20307061_1,00.html

Any thoughts, opinions, links to websites are all welcome.

Bill says we got great news

Today we had our doctor’s appointment at LC to discuss my diagnosis and treatment plan. First they reviewed all my test results so far:

·         7/21 Mammogram showed micro-calcifications in varied sizes & patterns. Some clumped together, some not. Very diffuse through the right breast. Ultrasound same day showed no distinguishable lump.

·         8/3 MRI showed enhancement in area of calcifications. This means the dye they put in my blood stream lit up like a Christmas tree on the MRI where the calcifications are.

·         8/17 Two biopsies. Both sites biopsied were determined to be ductal carcinoma in situ (DCIS), high grade, hormone receptive = positive.

Then the plan: because the DCIS is over so much of the breast, a lumpectomy would leave me disfigured and it would be difficult for them to know they got it all since the calcifications are so tiny. So the only way to be sure to remove it all is a mastectomy. Because of my young age (that’s right, I’m young!) and the large size of the area with DCIS (what they biopsied was non-invasive but that’s no guarantee it all is) they will also perform a sentinel node biopsy, which removes 1 to 3 lymph nodes and biopsies them. There is a 15% chance the lymph nodes would be positive for cancer (meaning there was indeed invasive DCIS in there somewhere).

For the treatment plan we discussed today we’re assuming my lymph nodes will be negative. A lot would change treatment wise if they’re positive so… we’re going to think positive… wait, I mean…  uhhhhh  we're thinking positive that the nodes are negative!

So assuming lymph nodes = negative for cancer is pretty good news.  They said I can have reconstruction right away (I’ll post more on this another day – there are some BIG decisions to make about that and we didn’t meet with a plastic surgeon). I won’t need radiation! Chemo is totally not necessary J  and Tamoxifen (drug recommended if you are hormone receptive positive) would be my choice to possibly reduce the chance of getting cancer on the left (no thanks, menopausal side effects…   I’ll risk it).

The next step would be genetic counseling (I am YOUNG to have this and I have a daughter so I’d like to know if I am BRCA positive) and meet with a plastic surgeon. Before I book appointments – I need to get that second opinion and decide where I’m going to get treatment. DF is working on getting some preliminary data from LC and I expect them to call me tomorrow with an appointment time. I believe it’ll likely be next week as the tissue samples and other test results need to be sent to them, as they will have their pathologists look at the biopsy samples and kind of start from scratch from the films and slides.

I feel overwhelmed. My mind is spinning. Bill feels like we got great news today (no radiation! reconstruction right away!). And it is good news but… great news to me would’ve been “We made a horrible mistake and have a nice day!” I’m still wrapping my head around all this. Even now, it just seems unbelievable to me.

Yesterday’s BBQ was good. I won’t post pictures of other people’s kids but here is Cassidy in the old kiddie pool and chilling in her chair from Saturday.