Medical Oncologist Appointment...PET/Bone Scan info...chemo schedule...

This morning, I had my first appointment with Dr. David D. Wright with Gulfcoast Oncology Associates (http://www.gulfcoastoncology.com/) over in Tampa. The office is right next to St. Joseph's Hospital and is not too far from home to make it inconvenient.

I have to say I was horribly anxious last night and before the appointment. I had trouble sleeping...just going over the questions again and again in my head. I had typed them up this time...and added more questions in pen as they came to me.

My friend and fellow Breast Cancer Survivor, Cindy, joined me for the meeting with the doc...she also brought with her a book, Dr. Susan Love's Breast Book, and a gift bag with a Breast Cancer Awareness TY Beanie Baby...a cute keychain and a card. I really appreciated her being there...and I love my little gifts!

Dr. Wright is young...like Dr. Cox, and he is very energetic, smiley and kind. He made me comfortable right away, answered all of my questions, and just generally was pleasant. Since I don't really enjoy meeting new doctors...it was nice to again like someone right away (similar to Dr. Cox). I feel like he took a lot of time with me to go over treatment options and the questions I had or ones that came up. Cindy was beneficial to catch some additional questions that I had missed. Thanks Cindy!

Okay, so next week, I will be having the PET and Bone Scan. Dr. Wright's office will set this up and call me to tell me where and when this will occur. They will attempt to get this scheduled somewhere closer to where I live for my convenience. Dr. Wright will discuss with me the results of the tests when they are available.

The "Standard Protocol" for my type of Breast Cancer is TCH, Toxotere, Carboplatin and Herceptin. I will be receiving the three drugs via my chemo port (on the upper left side of my chest) every 3 weeks for 6 total sessions. After that, the Herceptin will continue to be administered in the same manner, every 3 weeks for an additional 11 doses (17 doses total of Herceptin). Radiation will be with the Radiation Oncologist after the first 6 doses of chemo.

Chemotherapy will begin in 2 weeks, on October 15th. This will give me additional time to recover from the bilateral mastectomy that was just 2 weeks ago...thank goodness! And it will provide some time for the PET/Bone Scan to be completed with results provided to the doc. I will be receiving chemo at the office I was at today, and I toured the area to make sure I would feel comfortable there. It was fine...not dissimilar to the setup my mom has for her dialysis treatments. Luckily, I will only have to be there for 4-4.5 hours every 3 weeks. Heck, mom gets dialysis 3X a week...I think I can handle hanging out there with no problem!

I am having the chemo administered on Thursday afternoons, then I can get a shot on Friday (anti-nausea and other meds if necessary) and recover over the weekend. This way it will not interfere too much with work. The shot may include steroids (although we are going to be very careful with this) Neulasta and/or Procrit. Decadron was also mentioned. I have had interesting responses in the past to some steroid medications, so the doc will be watching this closely. I distinctly remember the last time someone gave me Prednisone...I experienced insomnia for 3 days...AND acute psychosis. Fun stuff! Hell, I managed the psychosis okay...nothing like a break from reality. No one at the UNT Criminal Justice Graduate Studies Department seemed to mind so much...maybe I didn't seem that different than my normal crazy self? Anyway, I told the doc he needed to watch steroid issues with me closely...and he indicated he would be available via phone if needed.

Ok...17 to 18 days after chemo, I will lose my hair. Yes, it will grow back, but ugh. The doc gave me a script for a "hair prosthesis!" That would be insurance jargon for a freakin' wig!!! And that's only the one for my insurance...apparently, "scalp prosthetic" is also used. That one seems wrong to me...my scalp won't fall off...although I didn't ask that question specifically (joking). Well...thank goodness Halloween is coming up...should be no shortage of goofy wigs I can don--for shits and giggles. I will probably get a good one though...we'll see. I have always been so hot natured...lately I have been feeling the effects of cold more...I may just need one. Who knows. I always did like hats...and my sis is a rad knitter. Note to self: find awesome cotton hats...allergic to wool, so wool is out. Maybe Lindsey Lohan (sp?) will date someone (else) who likes good hats this time. Much easier when I can buy hats at Target.

I also have this lidocaine cream that I have to rub on my chemo port prior to my sessions...my mom does this to her wrist before her dialysis...I will get with her for tips on how to best use this stuff. Crazy, the port is just below my skin, and they just go right in with the needle/chemo drugs. EEK. I'll probably need anti-nausea meds just to handle that shit to be honest!

What else? Oh, blood will be checked at each session, prior to starting...and I meet with the doc prior to each session. AND, the doc will be doing the genetic BRCA testing. It is covered by my insurance because I have been diagnosed with Breast Cancer.

OH...and if you are wondering how I will feel after chemo: Doc says I will feel like I have a mild hangover the day after chemo...along with a couple of days after that. He also indicated that nausea is an issue...although I kind of figured this...and when the nurse gave me a script for 3 different prescription medications for nausea, I could tell they were serious!!! Apparently, they will also be giving me anti-nausea meds with the chemo meds as well. I am thinking that someone may have experienced nausea in the past...maybe they were just covering their bases? ;-)

I think that is all for now...although my brain is mush from today. Heck, I had 2 hardcore naps after the appointment. Even with that damn Starbucks fix! Note to self: buy Starbucks store. Give free coffee to everyone on 9/11.

With love,
The boobless one in West Central Florida...the one searching the internet for a hair prosthesis...really? OH shit could I have fun with some wigs...
~Tory :-)

P.S. Doc says I look really strong and vibrant...and that I will be just fine. I know I will. I just like hearing a younger man tell me I look strong and vibrant!

Post Surgical Followup Appointment-Finally, some Good News!

So, yesterday morning I was incredibly nervous about my followup appointment with my Surgical Oncologist. I also had to find something appropriate to wear "out and about" that hid my damn drain lines and bulbs that are hanging out of my chest. I basically had to imagine that I was wearing two side arms...like an overzealous detective...but it worked...and it made me laugh! I wore a tank top with a gauzy flowy, oversized jacket thingy that hid my side arms...(the lines/bulbs/and my chest.)

I opted to drive over to Tampa for the appointment, and it was my first time to drive since the surgery on 9/16/09. My dad was actually the one who offered to let me drive...and for those of you who have been in a vehicle with my dad behind the wheel, Tory on Percoset is a better driver than dad in his best possible shape (sorry Dad, love you!) Anyway, driving was a bit  (okay, very) tiring and it made me sore. Made it over to the appointment just a few minutes late. I also drove us home...stopping at Starbucks on the way (gasp!) We also had to stop in at the drugstore, as I had split some of the incision points (yeoch...not too badly tho)...and I needed gauze, tape, antibiotic ointment, and Vitamin E Oil (thanks, Mel for the suggestion on the Vit E--works like a charm!) Yeah, I was incredibly tired after all of this, and I had one hell of a nap to "celebrate." Funny how you just crash out after a sort of "anxiety release." <--insert lots of jokes about men falling asleep after sex.

During the appointment, Doctor Cox, my Surgical Oncologist, was his usual cheerful self, and we read through the older-style Tampa General Hospital Pathology Report (the Moffitt and UCH reports were made using some newer software and were much easier to read and decipher) during the visit. I had my usual list of questions that we went through...

Left Breast: completely removed; additionally, all cancer was completely removed with good, clear margins; ample margin between cancer and chest wall; ample margin between cancer and skin surface; the final measurement of the cancer is about 4 cm...although it was so abnormally shaped...and much of the actual cancer was happening on a microscopic level, it had not formed into an actual "mass" per se. The rest of my left breast was full of fybrocystic breast disease--nothing too abnormal.

Doc said that I heal "very well" and he had no suggestions for me to follow/no specific change in anything. I asked him this as he had just performed the left breast lumpectomy just 2 weeks prior...and he would have been able to see how well/not I was healing from it.

Right Breast: completely removed. No cancerous cells found in breast tissue or the sentinel lymph nodes that were removed; however, there were numerous indications of some early pre-cancerous activity. The right breast was also full of fybrocystic breast disease (again, this is not too abnormal, lots of folks have that--surprised I felt no pain from it!) Essentially, I would probably have developed breast cancer in the right breast sometime in the near future. I feel very strongly that I made the correct decision in having the double mastectomy. Hell, it is a shock to look at the results...but at least I am here and able to look in the mirror at this odd breastless-being I have become ;-)

As you know, I have two drains hanging out of my chest. Unfortunately, the drains could not be removed during the appointment, as I am still draining more than the "less than 30 ml" requirement for removal. You could tell the doc really wanted to help me out by taking them out, but I really did not expect them to come out so soon. Besides, I find that they are a really handy-dandy place to keep the gun powder for my musket.

I received the Pathology report from Moffitt as well...they did some further testing and did the staging unlike the first surgical pathology report...pT2, pN1a, pMX with venous/lymphatic invasion present, extensive.

I asked the doc if the Moffitt report provided him with additional information he felt would be useful to him...as I could request the Tampa General Pathology slides be sent over there too. Dr. Cox did not feel like the additional information (other than what had been provided) would be beneficial at this point. If the Medical or Radiation Oncologist want the info, I will have the second review done by Moffitt.

Also, the Stage is at II instead of IIIa...this makes me feel a hell of a lot better. Cancer staging says a LOT about ultimate prognosis (okay, chances of death within 5 years), so the lower the number the better, statistically speaking. Now, I can say that I have always been an outlier on, well, everything, so I will just have to continue using that to my advantage. And right now, I see no advantageousness in my own death ;-)

Dr. Cox indicated that he would assist me in any way I needed to ensure my care was properly coordinated. He asked that I call him with any problems or issues I may be having.
I told him that I felt like he a lot of faith in his recommendations of the Medical/Radiation Oncologists...so I asked him what exactly made him recommend them. He indicated that he knew both of the docs and that the three of them speak regularly, throughout the week, and that they were all "friends." I told him that I would go with them as long as the three of them coordinated my treatment and worked with ME as a team. There are too many other options out there for me to feel uncomfortable with a doctor or the way a group of people work together for me to put something so serious as my own cancer treatment in the hands of people I cannot stand to work with!

Honestly, this is too emotional of a disease...and I have to be the head-honcho in control of my care. Some folks might not want that...hell, I have to have it...that's just who I am.


Next steps:
I need to call the Medical Oncologist to set up an appointment (this was done today, and my appointment is 9/30/09 at 9:15 AM).
The Medical Oncologist will coordinate the PET/Bone Scan, the Genetic Testing, and will begin to work with me on chemotherapy plans. It is possible that by Wednesday, I will know exactly when chemo will start. I should know most of the medications they plan to use...so I can research them prior to starting. I do know that they will be hitting me pretty "hard" with chemo...as I am young, I had an aggressive "grade" of cancer, and the fact that the cancer was HER2+ (also aggressive). I fully expect they will be recommending "Double Density" chemo....along with Herceptin. This would mean I receive the traditional chemo in heavier doses, every other week for just over 3 months. Additionally, Herceptin would be given weekly for about a year.
Since they will find NO OTHER cancer dammit on the PET/Bone Scan (positive thoughts!), this should be the worst part of the treatment...and it will be over...then Radiation will begin for about 6 weeks.

I also need to call back the Radiation Oncologist to determine if I need to see them now or sometime after chemo starts.

Reconstruction: I can begin this journey once chemo and radiation are completed--about 6 months out. I have tons of folks giving me recommendations on reconstructive plastic surgeons...Dr. Cox has some recommendations as well. I will just (mentally) have to look at this later, as I am kind of stuck with the indentions I have now...that is what I will call them instead of "former breasts..." how's about "the indentions formerly known as breasts?" I have had the pleasure of looking at tons of photos online of reconstructive surgery before and after pics. I should warn you...if you choose to look at these for shits and giggles, they are NOT for the faint of heart. Wow.

Returning to work: I should be able to start back to work on Monday...slowly, with some work from home (remote computer access rocks!)...up to 4 hours a day, 2 hours at a time. Limited driving at this point. I will slowly get back up to a normal work schedule over a few weeks. This is good...I am ready to go back (slowly...I am still way too tired throughout the day to go full on!)

Alrighty then...I think that is all for now...

With love and affection, and from the boobless one in West-Central Florida,
Tory

Post-Surgical Follow Up Appointment on Thursday 9/24/09

Well, I have my follow up appointment tomorrow morning (okay, this morning if you are watching the clock)...with my Surgical Oncologist, Dr. John M. Cox, to discuss how I am doing since my double mastectomy last week. They will check on the incisions...the Jackson-Pratt drains, etc.

I will also get my pathology reports from the surgery...these actually scare me a bit, as last time (when I had the lumpectomy), there was so much more cancer than we had initially thought...this is when I learned that the MRI had missed the size/amount of cancer in my left breast, and that the MRI had missed the cancer in my lymph nodes. Hopefully, there was NO cancer in the right breast they removed...and none in the sentinel nodes they removed on the right as well. Also, I am desperately hoping that all of the damn cancer in the left breast was removed...with ample clear margins...dammit!

So...pathology report...we will also get the information from the Moffitt 2nd opinion I asked for on the 1st pathology report. Hopefully this will give me some additional information the original path report did not include (doc said Moffitt had estimated the stage at IIIa, still "early" but a hell of a lot different than stage I).

Anyway, will also find out about PET/bone scan (when it will be and where); and I should have a better idea about when I will be meeting with chemo and radiation oncologists. I have some decisions about whether or not I want to use the folks Dr. Cox recommends...I will be doing some research on this in the next couple of days...there are certainly no shortage of options in those departments.

Off to sleep...more very soon!

Fiber-Padded Fake-Boob Soup for the Soul...

Well, let's see where we are at tonight...I am just shy of one week since my surgery...I had a double "simple" mastectomy at Tampa General Hospital last Wednesday morning (yes, I had both my boobies lobbed off.) During the surgery, the doc found no sentinel nodes in the right side that showed signs of cancer (so I still have lymph nodes on the right), and the right breast appeared to be free from cancer cells (yay!) The left breast was full of cancer cells (boo!)...so the doc took out a lot of tissue to make sure he got as much as possible. I had them remove both breasts because, when told that the left-side lumpectomy was unsuccessful and a mastectomy was needed, I figured that if you are going to take one, you are taking both. Hell, that way I wouldn't be lopsided (or any more off than I already am), nor would I be scared shitless that they had somehow missed something in the right breast (etc., etc.)

I have to say that you can never really be prepared for how a mastectomy looks. I saw some pictures on the internet and all...but when it is YOU, it is certainly different. You could also not be prepared for the sheer amount of tissue and flesh removed. I really did not expect to be, well...concave? The doc says that will "fill in" a bit over time, as my body heals from the surgery. And the wounds...well, they are ugly--they are like big gashes, actually. He used surgical glue, so I have no stitches or anything...but wow. If I try to make a "joke" of it...the best one I can come up with is that with my two gashes and my bellybutton, it looks like some stuffed animal sleeping? I could probably do a video on YouTube or something...but I am just not that irrational...really, I am not.

Emotionally, I am dealing. I think. I did have some trouble yesterday...my mom and dad were here and they wanted me to join them for a nice dinner out. I tried to get ready...I was dressed and all, but I just could not get comfortable in my clothes...I do still have two drains coming out of my chest, and they have bulbs at the end of them that just do not "store" well--no matter how you try to hide them or whatever. You can try to smash the bulbs and tubes into your skin as much as possible, but that is just horribly uncomfortable...sweaty, pokey, weirdness. Also, fiber "pads" that fit into my "mastectomy camisole" are truly goofy. I will have to find something that works better than that damn camisole...and those fake fiber-paddy boobies were just not working for me. Must try and figure something out before I will get truly comfortable with that business. Hell, maybe I will try "flat" too, but not yet...because (as I said), I am beyond flat at this point!!! So, last night, I ended up deciding not to go out to dinner--they went out together and brought me back food. I just was not ready...and I am okay with that at this point. We're gonna take this one slow and easy...on purpose.

Pain-wise...I get better each day. Really, I have more pain from the 10 feet of drain line they have up in me (slight exaggeration, I know...but hell, that's what it looks and feels like). Yes, I can feel and see the damn drain lines in each former breast (if someone has a better name for this "area" or lack of things...let me know, as I am at a total loss here.) Funny, my sis said Jackson-Pratt drains are kind of like reverse soaker-hoses...hmmm. The internal armpit drains are the worst, as they seem to sit right on top of a muscle I apparently use quite often--wish I didn't, but I do. I am still "draining" quite a bit, so I know that I will be keeping these oddities for a couple of weeks...or more. I wonder if there is any good way to dress them up a bit...if I had "fun" with them I might look at them differently? If I decorated them, could I wear them outside of my clothes and not upset folks? Could I put weights in them and use them in my next street fight?

Oh, the pain in my right upper arm from the lumpectomy and axillary node dissection I had a couple of weeks ago is still there and prominent. Overall, there has been some pain...mostly muscular and drain discomfort; however, percoset has been helpful in keeping the pain quite manageable--oh yeah. I am slowing down on my percoset consumption...and find that the more rest I get (sleep at night and naps during the day, to be specific) the more manageable it is (I honestly think your mind "copes" with the pain better with more real sleep.)

Anyway...aside from discomfort, funky drains hanging out from me (and snaked up in me), needing lots of extra sleep, and wardrobe issues...I think the LOOK of the result is most problemmatic. Surgery can be emotional to begin with...but this one packs an added punch. We'll see how I handle it over time...I know that I will likely subject myself to the further surgeries of reconstruction...there are multiple surgeries needed for this (most often 2, but sometimes more). I already have folks suggesting particular reconstructive plastic surgeons. Time will tell :-)

So what is next?
I have my follow-up appointment to my surgery on Thursday at 10:30 AM. My dad will be going with me. During that, we will get the final pathology report: find out if the margins on the mastectomy were clear...hopefully there is no infiltration into the chest wall; we will know for sure if there were any cancer cells in the right breast or the sentinel nodes that were removed; and we should know the final size of the cancer that was in my left breast. As far as we knew from the last surgery, we were looking at 4 to 5 centimeters (which was a hell of a lot larger than what was indicated on the mammo, the ultrasound and the MRI). I am hoping that this post-surgical appointment will be much more positive and uplifting compared to the last one :-) I really need some good news at this point (and I don't want to keep holding on to the initial results of "no cancer in the right boob you just had cut off!!!")
I have to make appointments to get the PET scan and Bone Scan (Bone Scan done as part of the PET scan). This will help us determine if there is any cancer in the rest of my body. My feeling is that there is not...however, I need to get used to the PET scans...this will likely be something I do annually or more often if indicated, for many many moons!
I also need appointments with the Radiological Oncologist and the Medical Oncologist. Pending the results of the PET, I should have a very good idea of when they want chemo to begin...along with what medications they would want to use during chemo. I will also have an idea of when radiation should begin. On chemo and radiation: I still have some options with these...I have some decisions to make about what I want or do not want. I have the chemo port...and I suspect I will be receiving chemo; however, my final decision on that has not been made...I have been reading a lot about Herceptin recently, as my cancer is HER2 Positive. Clinical studies of Herceptin have shown a 52% reduction in recurrence of HER2 positive invasive breast cancers...that's pretty darn good if you ask me. I certainly don't want to keep dealing with this shit over and over again!

That's all for now!

Surgery: Redux Duplex

For those of you who are interested and keeping tabs on what is going on with my health...
I am having a double simple mastectomy tomorrow morning, 9/16/09, at Tampa General Hospital. My surgeon will also be doing the Sentinel Node Biopsy on the right breast (as he did with the left) to check for cancer. If there is any sign of cancer in the Sentinel Nodes, they will do an axillary node dissection on the right. While there is no indication that there is cancer in my right breast, I feel as if I will be more comfortable having both removed.

Just a couple of weeks ago, I had a lumpectomy on the left breast...along with an axillary node dissection (there were cancer cells in 2 of the 4 sentinel nodes...and the pathology report showed 1 additional lymph node with cancer cells). So, 3 of 20 left side lymph nodes had cancer cells. My doc was unable to get "clear margins" on what he removed so far, and I don't have much breast tissue left in my left breast, my only option really was to have a mastectomy of the left breast.

When I discussed this with my doc, I felt like we should do a double mastectomy. This was based on a number of factors; namely, the MRI didn't show the amount of cancer in my left breast that was really there...so what IF there is some in the right breast not showing up; if you remove one breast and reconstruct it, it will never "match" the other one; I would be lopsided (lol); I would have an increased chance of recurrence; and so on.

For me, better to have both off...know for sure if the right breast has any cancer or not...get the appropriate treatment...get Cancer-Free...and get a new set of boobs later.
Well, I can't say that I am happy about having to do this...in fact, I am absolutely pissed off. It's a shitty hand to have been dealt, but that's why I like "draw" instead of "stud." Don't like a couple of cards? Throw em back and draw 2 new ones. And that's just what I am gonna do!
Anyway, just a hurdle on the road to becoming Cancer-Free...wish me luck...send me good positive thoughts...pray...drum...yodel...do whatever you do to help me get well! I appreciate it all.

My sister, Becky (who is absolutely the most awesome person) will be logging into my account again tomorrow to post on how I am doing. I never did claim that I am not neurotic.

Have a good one guys...I'll say goodbye to "the girls" for you!

~Tory

Why I will survive (or, how I found my breast lump)

Lots of folks, men and women, have been asking me about how I found my lump--or why, at the ripe, young age of 34 (now 35) I was having mammograms. Was breast cancer in my family, or what? Well, there is NO breast cancer in my family, no reason for me to think that I would need early testing or anything like that.

After writing this, I realized I not only tell you how I found this damn thing...but I give you a hell of a lot more emotion and background. Some of you may not want to read through...and that is fine (really, no guilt!!!) For you: I did do semi-regular self-exams (about monthly) in the shower, but I had felt nothing unusual. I felt the lump, high on my breast, to the outside, during working out. It felt like a pulled muscle--this was quickly noticed during a weight training routine. It was larger than the muscle area on the other side. I truly thought I had a pulled muscle--it felt like a knot. Then it got painful--like a knife stabbing me from the inside, so I (eventually) had it checked out. Do NOT believe people who say, "It doesn't hurt if it is cancer."

For those of you who want to read further, here is the emotional streaming...the contextual stuff that explains the thought process I went through...and why there was a 4 month delay in testing...and more...because I ramble!

In early March 2009, in the midst of a new workout routine (more weights and upper-body exercises), I felt an area of "hardness" above and to the outside of my breast area. It was where some of the muscles I was using for chest/pectoral muscle exercises were. It was just harder than it was on the other side. I really did not think much of it, as I was working out and exercising those muscles, so I just continued on my merry way. Hell, it was just a pulled muscle to me. I worked out up to 5 times a week...with cardio and weights. Occasional pulled muscles were nothing new...and this felt like a classic "knot." Nothing more, nothing less.

Later in March, something was telling me that I should get it checked. But then it started hurting a bit. And I had heard that damn (and woefully incorrect) saying that, "if it hurts, it's not cancer." Sad how many people think that is true. I kept using that as my mantra...but I kept feeling like I should get it checked anyway. Very low on the priority list. Wow...ME, my health, my well-being was LOW on my priority list!

As I was in the middle of a divorce, living with friends, flying back and forth to Texas, dealing with the emotions of having my mother being very ill, and just generally trying to keep from going completely insane, I kept putting off having it checked. Plus, it hurt, right? Oh, and my regular doctor had retired...so I had to find a new GP (and I hate that...I am uber picky with doctors).

Just after my divorce in early May, that damn spot began to hurt to the point that I could not just talk myself out of it anymore. I started hunting for a new doc...but then I was focused on my possible move back to Texas at that point. The pain felt like knives...or just one knife (hey, my boobs are smallish, multiple knives would not fit!) I would say that it felt like someone was stabbing me from the inside out...through the nipple and up through my neck. It started to wake me up at night. I started to worry...and started researching what this could be. I convinced myself it was a clogged duct, a cyst, or something, anything other thann cancer. Still needed to go to the doctor, dammit!

So, in June, I hunted down a new doc and made an appointment. I missed my first one, as my mother went back into the hospital in DFW/Grapevine. I went back in early July. Of course, my doc felt it and sent me for a mammogram. At that point, in early July, I had made the decision to move back to Texas to be near my family. I was going back and forth so much and had just lost any energy to be in Florida. All of my friends in Florida were supportive...My mom was in and out of the hospital so much, and I just felt like a ping-pong ball flying back and forth...I was totally, completely, fucking TIRED.

My mammogram was scheduled for later in July, so I made a trip out to Texas. I figured I would hang there, look for jobs and make 1 or 2 trips back to Florida (to get my stuff and get medical questions out of the way). The first trip back to Florida was supposed to be for a quick mammogram, to be told I had a cyst or a clogged duct, and I would be relieved and deal with it later. I had turned in my notice at work and had resumes out in DFW. I would move back to DFW and find a job when I got there...health insurance...well, that would have to wait.

I had my first Mammogram at 34 years of age...on Wednesday, 7/22/09. I was scheduled to be in Florida for about a week. I was told that I would have the results early the next week...or by Friday if there were any concerns. I kept telling myself it was nothing...but I have to say that I knew. I knew something was not right...but I had gone so stressed out over everything, I decided it was my MENTAL health that was not right!

On Friday, 7/24/09, my doc's office called me and told me that "further tests are needed."

I was sitting in my truck outside of Starbucks--right next to a Panera (unusual, right?) when they told me...I threw up. Luckily, I had time to open my truck door. Hey...I am not a puker...unless I am completely inebriated or physically ill--I am just not a mental-puker. I guess the stress, the year I had so far, my emotions, the reality, the fear...well, it was one hell of a puke. I cried and puked for about 8 hours that day. Much of it sitting in that parking lot. Those poor folks at Panera...just trying to get a bite to eat. Sucked for them!

So, I went back in on Monday, 7/27/09 for a targeted Mammogram and an ultrasound. A small mass was clear on the ultrasound. The technician brought in the Radiologist, an M.D. He said to me, "I am not 100% sure that is cancer, but it really doesn't look good." I still can picture that small black spot on the ultrasound...it was as if I had seen "my enemy." And I had.

Not-so-good news from the surgeon

Well, I am very sad to say that the surgeon dropped another bomb on me at the follow-up appointment. He was unable to get "clear margins" with the large amount of tissue he cut out of me last week. He ended up cutting out 2 sections and all were full of cancer to the margins (he cut out up to 9 cm in some areas). If he cuts out any more, I won't have much of anything left...and he will not be able to guarantee he gets it all anyway. Oh, and it is all high-grade cancer cells (meaning they are more aggressive and are least like normal breast cells).

I think the only "good" news from the Pathology Report was that only 3 of the 20 Lymph Nodes removed showed signs of cancer cells...

Unfortunately, I am going to have to have a simple mastectomy. And because I have absolutely NO FAITH in any of my imaging studies done up until now (Ultrasound and MRI)--mostly because the MRI missed that most of my left breast tissue is full of early cancer; I have opted to have BOTH of my breasts removed. I suppose I just have a "gut feeling" that they are going to find cancer in my right breast too...something that is so early that it isn't showing up, and that by the time it does show up it will be so pervasive...well, I am sure you get the gist.

I have to say that this scares me for other people...the cells that are present throughout my left breast are aggressive, ugly little critters that somehow evaded detection by our current technology. I am certainly GLAD that I know they are there...but the only way we knew this was by cutting out chunks of me and looking under a microscope...what if there is other stuff elsewhere that will evade detection for some time? Scary shit!!!
I certainly am very unhappy about having to do the bilateral mastectomy. Actually, it breaks my heart to do it, but I know it is the right thing for me.

Surgeon's guess (Staging without PET/Bone Scan info): Stage IIIa Invasive Ductal Carcinoma, High Grade, HER2+

Next steps:

Having Moffitt Cancer Center do a 2nd opinion on the Pathology Slides (just to be double-sure...I don't doubt the pathology report, I just want a second set of "eyes.") My surgeon's office is already making sure this gets done prior to next Wednesday.

Double Mastectomy with Sentinel Lymph Node biopsy on the Right Breast is scheduled for Wednesday at 7:30 AM. Doing this at Tampa General Hospital. This will require an overnight hospital stay...my Mom is coming in for this one.

PET Scan and Bone Scan will be scheduled as soon as I am a bit healed from the Mastectomy. Although I am scared shitless it will miss something important, it is the best thing we have at this point to make sure I am being fully treated for anything I may have elsewhere. This will give us the "final" info (for now) on the Stage of cancer.

Chemo and Radiation: Chemo will begin after some healing from mastectomy. Possibly 3 months of high density traditional drugs with 1 year of the Herceptin (or similar) treatment for HER2+ status. Radiation: 6 weeks of daily after the Chemo.

My sis, Becky, just left to go back to Dallas. I will miss having her here! My mom is coming in Tuesday. I am heading in to work a bit today, Monday and Tuesday.

Lumpectomy Surgery Follow Up Appointment tomorrow AM

Well, had the date wrong initially, but the follow up to my surgery is tomorrow. I am thinking the drain will stay in...it's fine but weird. That and the port under my skin are the most uncomfortable parts of this scenario right now. Becky is staying a bit longer tomorrow so that she can accompany me to the appointment. She leaves after 6 PM (I will definitely miss her!)

The only things I've noticed from the surgery are: some minor edema in my ankles and left hand; and I keep getting "goosebumps" on my left arm (strange?) Otherwise, just a lot of fatigue; however, I remember this being fairly typical considering I've been through other surgeries. This is pretty minor in comparison to the abdominal stuff from a few years back.

I will get the final pathology reports tomorrow on the tumor size, grade, and the lymph nodes. This will factor into the staging of the cancer. Will have to do PET scan and bone scan to make sure there is no other spread (outside of the lymph nodes we know about--and those are hopefully ALL, dammit!)

Lots of stuff! Just need an appointment with the Medical Oncologist to start making decisions about chemotherapy. More soon!

I took the 43 Things Personality Quiz and found out I'm a
Reinventing Self-Knowing Health Nut

Heard about 43 Things from my sister, Becky. Starting to use it...fumbling through, actually, but seems interesting. We'll see how it goes!
~Tory

Keeping you Abreast...

So, feeling better each day...Percoset is messing with my tummy (and brain as you may notice), but I suppose it beats the alternative. The pain is getting better and better though...this certainly is nothing like the pain I had after my abdominal surgeries--that's a whole different animal.

Wednesday was a very long day...had the lumpectomy and have a 3 inch or so incision mark toward my armpit and is on the side of my boob--in a decent spot. I asked the doc to be very mindful of scarring--I am already "Frankenbitch" from my abdominal stuff--9 inch vertical incision marks. Had stitches the first time then staples the second time. Well, this incision is held together with surgical glue--and I have heard that this heals very well (less scarring and pulling like with staples/stitches).

The mass was apparently about 2 cm (larger than what we expected), so with that and the fact that they found cancer cells in 2 of the 4 sentinel nodes, I was not a candidate for Mammosite. I had a complete Axillary Node Dissection, meaning the doc removed all of my lymph nodes from my breast/armpit area. I have a drain hanging out of the bottom of my left boob...the drain has a bulb on the end of it that reminds me of those plastic honey bear containers. Except for the fact that...well, that is NOT honey in that there drain bulb. Kind of icky stuff if you ask me--looks kind of like Kool-Aid if you were REALLY hard up. I am emptying it regularly and logging the date/time and amount of stuff I remove from it. I suppose it is a good thing that I don't get too queasy with stuff like that.

I was also fitted with a port for chemo...it is just below my collarbone on the left side. Sticks out a bit--which is a little disconcerting. I keep bumping it or trying to scratch at it. Weird implant thingy. Feels very strange.
My doc gave me a totally rad surgical bra to wear. Rad in the fact that it is totally, hilariously, and disturbingly ugly! Oh well, style is not what I am going for right now--considering I have extensive bruising and the drain line/bulb.

So, looks like I will be doing the "traditional" chemo first then radiation later. Bleck.

Ok, so the next steps:

Follow up with the doc (surgeon) on Wednesday. I will get the final pathology report at that time, and this will guide me and "the team" in making further treatment decisions.

Will be getting a PET Scan and requesting a bone scan (to check for cancer elsewhere in my body). The results will also help steer some treatment planning.

Need appointment with the Medical Oncologist to determine when Chemo will start and what types we will be using.

Also need appointment with the Radiation Oncologist.

Surgery on 9/2/09, and possible next steps

Here's the scoop:
Today, I am having a lumpectomy. I chose this from 3 options, a lumpectomy, mastectomy, or a nipple-saving mastectomy. I chose the lumpectomy, as the information/research available shows no real difference in survival/re-occurrence rates between lumpectomy or mastectomy. The procedure will take approximately 2 hours...starting around 2:15 PM. It may go long, I was told my doctor is very meticulous.

During the procedure, Doctor Cox will be removing the mass and ensuring a clear margin of non-cancerous cells removed (approximately 4-5 centimeters will be removed from my breast). He will be conducting a Sentinel Node Biopsy, meaning they will remove the Lymph node that dumps into the area that has been identified as cancerous. During the procedure, the node will be tested for cancer cells. If it is clean, no more nodes will come out. If there are cancer cells, they will perform an Axillary Node Dissection, thereby removing all of the lymph nodes in the area (including my armpit area). This will require an extra incision and probably an overnight hospital stay--I will have a drain if this occurrs as well.

IF there is no cancer detected in the Sentinel Lymph Node, he will fit me with a temporary balloon for Mammosite therapy.

Then, he will be inserting a port for chemo.

At this point, and there will be additional tests done to do the final Staging and Grading (on the removed mass), it appears I have Stage 1 Invasive Ductal Carcinoma. The mass looks to be about .5 cm X .5 cm based on imaging. The final biopsy after the removal will give us the exact size. The mass is Estrogen and Progesterone Negative and HER2 Positive.

The pathology report for the surgery will be available in 3-5 days. My follow up appointment is in one week, next Wednesday, 9/10/09, at 11 AM.

If Mammosite Therapy: Radiation will be only 5 days. If I am not a candidate for Mammosite (mass too large or if the lymph nodes have cancer spread), I will have to do the traditional full-breast Radiation (6 weeks of daily radiation on the full left breast). Mammosite allows them to target the radiation to just the offending area.

Chemo: because of the nature of HER2 positive cancers, it is very likely that I will need chemotherapy. Herceptin is the drug of choice, and there could be additional chemo drugs used. Herceptin is a year-long treatment.

Some additional info:
Doc is using surgical glue today, so no stitches.
There is risk of lymphedema if they have to do the Axillary Node Dissection (actually, a very good chance I will get it...)
The biopsy tissue samples are made into slides and saved for 5 years

Keeping you Abreast of my, well, breast?

Okay...Here's the update:

I was diagnosed with Breast Cancer: Invasive Ductal Carcinoma; Estrogen and Progesterone Negative; and HER2 Positive. The stage and grade is still in question until the surgery and final biopsy is complete.

The mass looks to be very small...so far it looks like it is about .5 cm X .5 cm; the MRI that was done on both breasts and my armpits was "clean" except for the mass we already knew about. The mass is in my left breast, I found this myself back in March...thought it was a pulled muscle. It became VERY painful in May, and I scheduled an appointment when the pain just would not stop. Hey...glad I found it and did something about it!

My surgery is Wednesday, September 2, tomorrow. I am scheduled for 2:15 PM...have to be there at 12:30 or so. I am having a lumpectomy. My surgeon is going to try to prep me for Mammosite (a newer radiation method that targets only the specific area of the breast in question); additionally, my surgeon will be implanting a port for chemotherapy.

Becky, my sister is here in Florida to help me out during this...

I have asked Becky to post something on Facebook (using my account) to let you guys know I am doing okay and am in recovery.