Preliminary PET Scan - ALL CLEAR!

I'll write more later about the appointment with the breast surgeon, but before she even saw me, she met with the radiologist who was going to read my PET Scan.  They went through it three times and see nothing other than the larger of the 2 spots in my breast.   WOOHOO!   Final report will come tomorrow but I don't expect anything to change.   We are now even more confident this is a local recurrence which is totally curable!     Another good day!

PET Scan

One of my awesome neighbors drove me over to the hospital for my PET Scan. I had read online that a Xanax (anti-anxiety med) might be good to calm my nerves but I did not want to drive after taking it. I am sure I will say this MANY times during this journey, but I have really been overwhelmed by all the offers of help from near and far.  I know the family and I will be well taken care of!

My stomach growled all morning so I was eager to get the test done. Last night I had celery with unsweetened peanut butter and broccoli for dinner.  YUM!

The tech, Karl, took me in ahead of my scheduled time since I was at the hospital super early.  (At first I thought the tech's name was Kari, which is the name of one of my BFFs in Finland so I instantly felt her presence here.  I love when that stuff happens.). Karl took my blood sugar to make sure it was where it needed to be and then injected me with radioactive glucose.  (Basically the glucose will bind to potentially cancer areas and light up on the scan.  They don't want you to have glucose from food coursing through your body, so hence the dietary restrictions.).  I had to rest for 45 min to let the glucose go through my body but luckily I was able to listen to music and I just closed my eyes and rested. It was kind of nice!   I chose Enya for my music as it reminds me of my honeymoon.  I listened to her over and over again on the plane ride from LA to French Polynesia. Takes me back to an incredibly happy and peaceful time!

After 45 min, Karl took me into the room where the scan was happening.  I laid down on the table and just chilled out for about 28 minutes. The tube is bigger than an MRI so not claustrophobic for me at all. Just had to lay still and of course, everything starts to itch!  It went by fast and I was able to eat right away.  I had gone  Apple picking yesterday with Emily and our good friends across the street and had brought one of the yummy apples with me. Then I got a huge coffee - luckily they had soy milk at the coffee shop in the hospital.  Now I'll get something a little more substantial in the cafeteria and wait for Craig to get here for appointment with breast surgeon.  I should have PET results tomorrow!

Theme Song

In September 2012, I attended a retreat for young breast cancer survivors in Nashville.  It was sponsored by an organization called Women Rock for the Cure.  The retreat itself was hard for me because I am pretty sure I was the only one there that had not had chemo.   Everyone talked about their chemo experiences a lot and I had zero to add.  I also felt a bit "guilty" about not having had it. 

On the second night, the people running the retreat did a "performance" for us and chose the song "Firework" by Katy Perry.   It was fun to watch and they clearly had fun doing it.  I did not really pay attention to the words to the song.  Back in August of this year, Craig and I saw Katy Perry in concert so I have been listening to her music a bit more.   I finally actually listened to the words to "Firework" a month or so ago and better understood why they chose that song.  One line in particular really resonates with me now...

If you only knew what the future holds
After a hurricane comes a rainbow.


Right now is seriously a hurricane and I just need to wait it out for my rainbow!   I have decided this will be my theme song.

PET Scan preparation

Tomorrow at 12pm, I will have a PET Scan to make sure the cancer had not decided to take up residence in other parts of my body. This is standard protocol and my oncologist is confident nothing will be found.  Since the appointment got scheduled so late, I have not received much in the way of instructions from Newton-Wellesley Hospital as to how to prepare other than "no carbs or sugar for 24 hours before and nothing but water for 6 hours before."   Not really being sure "no carbs or sugar"  means, I headed to the internet. 

The best information I could find was for an imaging center in Anchorage, Alaska (random).   I can eat the following:

1. Meats: beef, chicken, lamb, pork, seafood, tofu
2. Eggs, cheese, unsweetened peanut butter, nuts
3. Butters, margarine, mayonnaise, vinegar, oil
4. Vegetables (non-starchy): broccoli, asparagus, spinach, green beans, cauliflower, zucchini, lettuce, mushrooms, bell peppers, celery

As many of you know, I went vegan/plant-based about 2 years ago so NO meats, cheese, dairy, etc. which basically is the bulk of this list!   So I am going to gorge on carbs until 12pm and then eat vegetables and nuts for the rest of the day.   Sounds fun!  I think I'll be pretty cranky by the time the test goes around and will rush to the hospital cafeteria after for some real food (since I have to stay at the hospital until 3pm for the appointment with the breast surgeon).   This should be a fun 24 hours!

Telling the kids

Because the news was so positive at the appointment with Dr. Block, we decided to tell the kids on Friday after school.   I don't want to be hiding appointments from them.  My surgeon appointment on Monday is at 3pm so I already know I am going to have to find someone to get them off the bus.

We told them the basics:

1. Mommy had breast cancer 3 years ago and now it is back
2. Doctor's have a plan in place to treat it and I will do everything they tell me to do
3. I'll have surgery and radiation which might make me a little tired
4. Hopefully I won't have to have chemo (Emily was horrified when I told her it would make my hair fall out and said she does not want me having chemo)
5. It should be all wrapped up by the end of the year

They both asked a few questions but seemed ok with the whole thing.  They ran off to see the new puppy our neighbors brought home yesterday.  Emily walked in and announced to the mom, "My Mom has cancer."    Luckily that Mom already knew what was going on!  I am not at all surprised about Emily's openness.  I totally expected it.

First appointment with the oncologist

Craig and I met with Dr. Block, my oncologist yesterday (with his sister, Anne, as our scribe).  Luckily she was able to squeeze us in this week.  Friday morning I was in really rough shape.  I felt like I could not breathe.  I was happy to get a plan in place but was terrified about what Dr. Block would say.  Luckily, the appointment could not have gone better and I felt like I could breathe again. 

This is what we learned...

Based on the initial pathology of the small sample the radiologist took this week, it looks to be a very slow growing cancer (Grade 1, which is different from Stage 1) with similar characteristics to my original tumor (ER/PR+ and likely HER2- but there is more testing the be done there). The oncologist thinks either (1) Tamoxifen (the drug I have been taking for the last 3 years to prevent recurrence) does not work for me or (2) the cancer is encapsulated in scar tissue with little blood flow and therefore the Tamoxifen is not reaching it.   In any event, I will stop taking tamoxifen and switch to something else, an aromatase inhibitor.   These drugs shut down estrogen production but only work in postmenopausal women, so I'll get shots to put me into menopause.    (Therefore, in January when it is 0 degrees outside, I am sweating, you'll know I am having hot flashes. ;) 

Standard course of action is surgery to remove cancerous tissue followed by 6 weeks of radiation to zap whatever might be left. After the surgery is done and they can test all the cancerous tissue, we'll make a decision about chemo.  She thinks probably no but we need overall pathology to make that determination.   You might think that chemo is the most conservative thing to do and why wouldn't I just have it this time...   There are studies that seem to show in cases like mine (or how we think my case will be) that the chemo really provides no additional benefit and does more harm than good.  I promise to attack this recurrence with everything that makes medical sense!)

We will meet with the breast surgeon (Dr. Cahill) on Monday to talk about the surgery.   It will have to be a little creative since I already had the bilateral mastectomy 3 years ago and now have implants.   We don't know if they'll have to remove the implant all together, swap it out, etc.  The breast surgeon will work closely with my plastic surgeon to figure that all out.  Radiation also complicates things as it can have an adverse effect on the implants. 

They took blood at the appointment and Dr. Block called me Friday evening to let me know the tests came back all normal - tumor markers, liver enzymes, bone something - basically anything that would indicate the cancer had spread came back indicating that is definitely has not.   PHEW!   

I'll have a Pet Scan on Monday just to make absolutely sure the rest of my body looks clear.  The doctor said multiple times this is just standard course of action and that she is not worried about it having spread since the tumor appears to be very slow growing.  They are referring to it as a "local recurrence."  That was the biggest relief for us and I walked out of her office with a huge smile on my face.

Here we go again...

I really hoped this blog would never be needed again but here we are, three years and 9 months after my original diagnosis with a recurrence.  So how did we get here?

In July, I had an appointment with my new plastic surgeon in Massachusetts, Dr. Driscoll.   My oncologist, Dr. Block had recommended him.  It was just an annual look at my reconstruction.  He complimented Dr. Glatt's work (NJ plastic surgeon).  He chatted with Emily about Frozen. I really liked him.   Then he found a small lump.  He asked if any other doctors had commented on it.  I said not and that I had not noticed it the last time I checked myself.  He figured it was scar tissue but recommended an MRI to be safe and to just get a look at the implants.

Breast MRIs must be done on days 7-14 of a woman's cycle so I decided to wait until September, once the kids were back in school to do it.  On Monday, Sept 8 I had it done.  I was nervous about the procedure itself - the claustrophobia - but knew I had gotten through one 2 years ago so I could deal.  It was fine just loud and uncomfortable keeping my arms up over my head for 45 minutes while lying face down. My tech was very nice and comforting and I got it done.

On Friday of that week (Craig's 40th birthday), I called Dr. Driscoll office to check in on the results. He called back early afternoon and told me that he and Dr Cahill (who I later found out was a radiologist) had looked at the films and they were inconclusive so they wanted me to come in for an ultrasound and potentially a biopsy.  He did say they thought the lump was benign. Craig was on a plane back from San Fran so I headed across the street to my friend, Jen's house for company and to talk.   We talked for a while and then her daughter returned from preschool so I checked Facebook (since I am addicted to it...). At that point I learned that a woman that had lived on my hall freshman year at Holy Cross, Darby Stott had lost her battle with breast cancer that morning.   Darby's initial diagnosis was about a year after mine and it came back last May in her liver.  I was very happy to not be alone at that point    Cancer sucks.

On Monday, the plastic surgeon's office called to schedule the ultrasound.  Luckily they had an opening on Tuesday morning so I of course took the appointment.

We decided that Craig would put the kids on the bus and neighbor Jen would come with me.  After my last ultrasound in January 2011 where I was alone at the appointment, I did not want to be alone but I did not think this would be anything.  Dr Cahill did the ultrasound and told me the lump was definitely not a cyst.  It was a solid mass.  There also was a very small thing that could be seen on the MRI that she tried to find with the ultrasound but could not. She thought the lumps could be a fat necrosis (which is benign and often happens after surgery or injury) but she was definitely being vague.  She decided to go ahead with taking the sample for biopsy. We had to wait a little while for her to free up but it ended up being a pretty short wait.  The biopsy itself was a bit uncomfortable which surprised me a bit since I have no feeling in either breast but I guess there are still some working nerve endings.  Getting the sample was a bit tricky because the spot it so small and is right up against the implant.  I went home to wait for the call the next day.

Dr. Cahill had told me she'd call between 3 and 5 so I kept myself busy.  Went to a PiYo (Pilates/Yoga) class, puttered around the house and then headed out to run errands.  I planned to be home well before 3pm.  At about 1:30pm, while I am standing in the dairy aisle at Whole Foods my phone rings with a weird local cell phone.  I answer it and it is Dr. Cahill.  She said something like, "we need to talk.  The results are abnormal. You sound like you are out somewhere. Go somewhere quiet and call me back in a few min."   I ditch the shopping cart and sprint out to my car to call her back.  She tells me it's cancer and my mind races.  She said something about "local recurrence". (The lump is in the breast that had the rumors.)  my mind continues to race.  She has already spoken with my plastic surgeon and he has offered his support. She talks about the implant probably having to come out but them reminds me next steps are a discussion with my oncologist and breast surgeon.  She agrees to call them to find out who I should see first (oncologist).  I hang up with her and call Craig.  I cry.  He curses.  I call my parents.  They are shocked.  I go back into Whole Foods to finish my shopping and then drive home.   I stay off the internet which is SHOCKING.  I tell a few close friends.  I imagine unimaginable things and wait for Craig to get home.

I made so many changes in my lifestyle after the original diagnosis - consistent exercise, vegan diet, more organic foods, etc.   I know I did everything the science pointed to last time but it still freaking came back.  We are mad and sad.  Time to kick cancer to the curb again!