Dana-Farber visit

I got a call yesterday that Dr. Winer is able to see us tomorrow (Friday).  I am so happy he is able to get us in so quickly but of course a little panicked if he feels like he HAS to see me to soon.   Ahhh.. the life of a cancer patient.     Our schedule is as follows:

9:45am - Arrive and get registered
10:30am - Meet with Dr. Winer's fellow, Dr. Goel.  Per the new patient coordinator who called to schedule the appointment, I am going to "love" Dr. Goel
11:30am - Meet with Dr. Winer

It will be a long day but hopefully we'll get some answers.  My biggest question for Dr. Winer is "Have you seen a case like mine?" since all the other docs keep talking about how unique I am.

Many thanks to my college friend, Marcia, who got to know Dr. Winer while he was treating Darby. for potentially being the reason I got in so quickly.   She ran into Dr. Winer on a recent flight to NY and they shared a cab into Manhattan.  She mentioned me to him to let him know my team would probably be consulting with him.   He is amazed by the freshman/sophomore year hall connection that Kathy, Darby and I have!

So, today I am trying to keep myself busy.  I plan to get both Craig's and my car inspected.  Need some frames from Michael's.   Anyone need some errands run???

Because traffic into Boston is such a nightmare these days, we will leave pretty early - before the kids get on the bus.   I am very thankful for our amazing neighbors, notably Jen across the street who will take my kids very early, feed them breakfast and get them on the bus while getting her 3 kids ready for the day.

To Boston we will go

This morning, I got a call from the oncologist covering for my vacationing oncologist. She had reached out to Dr. Winer at Dana-Farber via email last Friday to present my case and get his thoughts.  After going back and forth with him, he asked to get my tumor slides so Dana Farber can run their own pathology on it and he'd like to meet with me in person.  So, now I am waiting for his office to call me to schedule an appointment.  So... much... waiting.  I really wish I were a more patient person!

We chose Dr. Winer for this consult because he came highly recommended by 2 women I went to Holy Cross with, Darby and Kathy.  We lived on the same hall my freshman and their sophomore year.  Kathy was diagnosed in her late 30s and Darby at 40.  Really odd that we have this in common. I am SURE our diagnoses has nothing to do with living on the same hall... It is just a crazy coincidence.   A really crappy coincidence.   Kathy is doing well.   Darby lost her battle 1 month ago, on the day I found out I needed to have the ultrasound and biopsy (which also happened to be Craig's 40th birthday).   I have heard to many great things about Dr. Winer as both a doctor and a person.  He is chief of the Division of Women's Cancers and director of the Breast Oncology Program in the Susan F. Smith Center for Women's Cancers at Dana-Farber.  The doctors keep talking about how I am a unique case since this recurrence "was not supposed to happen while on Tamoxifen."   I really would prefer to be the boring cancer case.  At least I know that I have really amazing doctors considering my case to come up with the best possible outcome!

Radiation planning

Sorry for the silence but we are mostly waiting right now so there hasn't been much to report. Today we met with the radiation oncologist (Dr. Lingos) at Dana Farber to start planning for my radiation.  We ended up being there for almost 3 hours which we did not expect.  We accomplished the following:

• Confirmed my implants are ok as is to radiate around, although there is always the possibility of issues down the road
• Discussed likely side effects (skin issues - sunburn, tenderness, peeling - and fatigue) and more rare ones (lots of scary stuff I won't think about now)
• Discussed what to radiate (just the breast or breast and lymph nodes).   She is of the mind to radiate both and we agree to be more aggressive here.  The risk of additional side effects is low so if it gets me any benefit, I'll take it.   She said a lot of doctors would leans towards not radiating but she is of the school that would.   She's still thinking about it but we'll confirm before the process gets started.
• Discussed soap/deoderant considerations as you need to be careful what you use
• Set up a schedule which starts on November 5 for 28-33 treatments.  If I go 33, I will end on December 23.  If I end up needing chemo (which is now dependent on some further testing), the schedule will change as I'd have chemo first.  My treatments will be at 1pm each day, which I scheduled forgetting how many half days and days off we have in November in Hopkinton!!!   Any neighbors reading this... I'll probably ask you to get the kids off the bus every now and then and might be looking for some help on days schools is closed! ;)
• Chatted with another radiation oncologist who works there that was in my class at Holy Cross.  I noticed him when I was researching Dr. Lingos and he happened to be in today.   It was nice to see a familiar face (even though I did not know him well during college).  We Crusaders stick together!
• I have been really impressed with how much the Boston area doctors, across hospitals, work together.  This was not the case in NJ.   In Boston, they all know each other (or at least of each other) and are happy to consult with each other to get you the right answer.   Egos seem to not be an issue.   (I am not saying egos were an issue in NJ, just that the doctors seemed to stick within their own hospitals when it came to consultations.  It was up to you to get your own second opinion if you wanted one.)
• I now have 4 tattoos - small blue dots that look like freckles which mark where they will radiate.   This will help them position me each day and will provide a reference should I ever need radiation again.  I will be given the lifetime maximum dose for my right breast so they'd need to be careful in the future to not radiate the same spot.  
• Everyone at this facility is SO nice - doctors, nurses, techs that administer the radiation.  I am very comfortable there.

As for the chemo question, we think that my tumor will be sent out for the Oncotype DX testing I had last time to see if my "score" has changed at all.   The score is an indicator of the likelihood of "distant recurrence" or metastates later on.  Hopefully, the sample was sent out today and we'll hear back within 2 weeks.  We are still hoping that the risk is low given my ER/PR+ (estrogen, progesterone) status but we'll see.  Craig and I want to be as aggressive as the medical community will allow/recommends as I cannot go through this again in 3.5 years.  (Having chemo 3.5 years ago would likely NOT have prevented this recurrence so I know we made the right decision at the time.)  
We'll also do the consultation with the medical oncologist at Dana-Farber (Dr. Winer).   Every time I mention his name to anyone, they talk about how great he is.    He clearly is very well-respected in Boston!

Pathology is back - Good news!

My breast surgeon surprised me with a good news phone call today.  I was not expecting to hear from her until tomorrow or Wednesday at the earliest.   She provided the following information:

1. Both spots (5mm and 4mm in size) were cancer
2. Estrogen/Progesterone +   (I assume HER2- but I will confirm with the oncologist)
3. Clean margins were achieved in both spots
4. The tissue they removed looks to be the same as my old cancer
5. There was no breast tissue evident in either spot, which means they did a great job the first time.   (Not sure how the heck I got breast cancer in a spot with no breast tissue.  I plan to discuss with the oncologist.)

So everything points to no chemo but the oncologist will put a call into a doctor at Dana-Farber to ensure they are in agreement.   Given this is the same cancer again, I cannot imagine anyone saying yes to chemo but I'll be happy to have 2 hospitals agreeing on that point.

I think I will finally have my first post-surgery glass of wine tonight as this is the good news we really wanted this week!

Next week, we meet with the radiation oncologist at Dana-Farber in Milford to start planning for my radiation.  My breast surgeon commented last week that the radiation oncologist we met at Newton-Wellesley is super conservative when it comes to removing implants for radiation, as in she almost ALWAYS has them taken out.   The breast surgeon is confident Dana-Farber doctor will be in agreement with the decision we made to leave them in.  

The Surgery Day

I am very happy to have yesterday over and done with.  The day ended up going more quickly than I thought it would even though both the MRI and surgery were both a bit delayed.

The MRI was a bit of an adventure.  The purpose of it was to find the smaller lump and mark it so the surgeon knew what to remove. They had to keep pulling me in and out of the machine to move the marker around, a few millimeters here and there.  The radiologist who had done the ultrasound and biopsy was the doctor there for the MRI. They finally figured out the right spot and we went off to wait for my surgery time. 

The surgery went well.  My surgeon was quite impressed with my original mastectomy work.  She said there was absolutely no breast tissue left.  (Im not sure how I got breast cancer again in a place with no breast tissue...  I guess that is a question for my oncologist!).  The bigger of the 2 spots had become attached to the capsule around the implant.  I had not previously known this but after you get implants, your body forms a capsule of fibrous scar tissue as part of the healing process. In removing the tumor, the surgeon had to take part of the capsule.  I guess it will rejuvenate over time. Luckily, she did not damage the implant itself although I guess there is still a chance it could somehow rupture.  

The surgeon will call me with the final pathology next week and we will use that to decide on chemo.  I guess the cancer crew (oncologists, surgeons, etc) at the hospital met last week to discuss my case and based on preliminary pathology, they are all in agreement on no chemo but we need to make sure the pathology of the biopsied tissue is the same as the full tissue. Emily seems very concerned about whether or not I will have chemo so I am looking forward to having the final decision.  

I hung out in recovery for a while and ate the best PB&J sandwich EVER!  I have to leave the dressing on until tomorrow so no shower until then. I was pretty sore last night so I took a Percocet. I had trouble getting comfortable so I didn't sleep well but I am not in too much pain today.  I am just going to rest on the couch and get caught up on television.  I haven't done that in ages!!!

Everyone at the hospital was so great. I had the A team in the OR as a friends works in the hospital and made a call to the OR nurse manager.  It's nice to have connected friends!

Thanks so much to everyone for the emails, Facebook messages, blog comments and texts yesterday and today.  I am a luckily girls to be surrounded by so much love.  

Oh and I am VERY HAPPY to be CANCER FREE again!   I hope I stay this way for much longer than 3.5 years this time!   And I want all of you to be healthy too so please, see your doctor every year.  Get a mammogram if you are 40 or over.  Get to know your body and do something about it if you notice something unusual. 

Out of surgery

It went well. I am sore but they have the best PB&J sandwiches here! :). More later when we get home.

Surgery delayed by an hour

For anyone checking, I wont go in until 2:30 now. Surgery should be an hour.  I'll post from recovery or on the way home.