This chemo thing is getting real

I finally heard back from Dana-Farber in Milford today (after calling yesterday to find out when they were going to call me to schedule everything).  The oncologist that the Boston doctors referred me to (Dr. Sinclair) left on a 2 week vacation yesterday.  According to the new patient coordinator, Dr. Sinclair would not be able to see me until the week of Thanksgiving.  This obviously was completely unacceptable so I called Dr. Goel (Dr. Winer's fellow) for help.   He actually answered the phone (it was his cell).  I explained the situation and he told me to give him 30-45 minutes to get things sorted out.  

About 15 minutes later my phone rang and it was Dr. Goel.  He had spoken directly with Dr. Sinclair who told him she could definitely see me before Thanksgiving and that I could start chemo the week of November 10.   I actually want to start the next week after that so I have treatments over a week before (rather than 2-3 days before) Thanksgiving and Christmas.  Dr. Goel told me that Milford would call me back soon to get everything scheduled.

About 15 minutes after that, my phone rang again and it was the new patient coordinator.   After much back and forth, we settled on the following dates:

• Friday, November 7 - consultation with a thoracic surgeon about installing a port (**See below).  Actual port installation would be the week of November 10.
• Wednesday, November 12 - Chemo "orientation" with Mary Beth, a chemo nurse
• Tuesday, November 18 - The first chemo session, along with my first appointment with Dr. Sinclair.

I am a little nervous about not meeting Dr. Sinclair until the first day of chemo but this is the way it has to be given her vacation and my desire to get going. She looks super nice based on her picture on the DF website.  ;)  (She also looks super young.  It makes me feel old to have doctors that are way younger than me...)

(Apologies to my friend Dennie for spending much of our walk this morning on the phone with various doctors and Craig.   Our walk did not go as expected but she was a good sport about it!)

After getting back from running some errands, I made a bunch of other calls:

• Moved my December dentist appointment to next week since you can't have your teeth cleaned during chemo, as lots of bacteria are brought out by the cleaning
• Found out from our insurance carrier that I need a prescription in order for insurance to pay for a wig but that I can go anywhere for the wig
• Got Dr. Goel to write me a prescription for the wig since I want to get that done before chemo starts and I won't see Dr. Sinclair to get it from her
• Made an appointment at a salon in Boston for the initial wig consultation, which will be next Thursday.   I burst into tears when the woman asked me (in a very sensitive way) why I needed the wig.   Thanks to Elizabeth to coming with me.
• Left a message for the oncology social worker at Dana-Farber in Milford to see if I can set up a time to talk to her.  I am in need of some help right now to process all this crap. 

After all that, I got the kids off the bus and ran them around to soccer and dance.  Just another day in the life of a suburban mom.   I wish...   The reality of chemo is starting to hit me and it literally takes my breath away.  I know so many people who have done this and all of them made it through.  I know I will too but it scares the crap out of me.   And the hair loss...   I have this really thick hair and I will be sad to see it go but hopefully it will eventually come back.  But if it all comes back grey, I will be pretty pissed.  (Craig, on the other hand, will laugh at me since I have been making fun of his every growing white hair for YEARS!)   I know I can do this.  The unknown is just a bit overwhelming now.

**Implantable ports or port-a-cath. A catheter connected to a port is surgically inserted (tunneled) under the skin of the chest, or sometimes the upper arm, by a surgeon or radiologist. You will receive either local anesthesia or be consciously sedated. You may be able to see and/or feel a small bump in your chest or arm, but you won’t see the tip of the catheter outside the body. Before each “access” or needle insertion, the skin over the port may be numbed using a cream. When treatment is given, the skin is cleansed and a special needle is inserted through the skin into the rubber seal. This allows blood to be drawn or treatment to be given into the catheter that is connected to the port.

Chemo is on

I spoke with Dr. Winer's fellow, Dr. Goel, at Dana-Farber today and they are definitely recommending chemo.  They'll still discuss my case on Tuesday but we will move forward with plans to get it started.    Dr. Goel was emailing the medical oncologist (Dr. Sinclair) at the Milford location (15 minutes from my house) so that her office could call me to schedule appointments.   I am not sure I will hear back today. I'll call there on Monday if I don't hear from them.   Now, I just want to get a start date so we can make plans for the next few months.   This totally sucks but I know I can do it and I am SO lucky to have such a great support/prayer network near and far!

Discussions about chemo

Newton-Wellesley was able to squeeze me in yesterday, so I met with Dr. Block.  Unfortunately, Craig was not able to come to the appointment with me.  This was fine for the appointment itself, but I am finding the 45 minute ride there is a little too long for me to be alone with my thoughts....

Dr. Block was very apologetic about the mix-up the day before.  She too thought we had an appointment and never would have thought that the September appointment replaced this October one.  I appreciated the apology.  She had connected with Dr. Winer via email and learned that Dana-Farber had finished up their own pathology report on the tumor.  It was in complete agreement with Newton-Wellesley so we are looking at a recurrence of my old cancer and not a new cancer.  I am about 99% sure at this point that I will be having chemo as I cannot imagine another doctor at Dana-Farber will come up with a compelling reason not to give me chemo if Dr. Winer can't...   It sounds to me like they think potentially that there is something other than estrogen fueling the tumors which is why the tamoxifen did not work.  Unfortunately, they don't know what did cause it to come back. I plan to explore that more with Dr. Winer.

Dr. Block took me though the chemo protocol - 4 rounds of Adriamycin and Cytoxan (AC) and 4 every other week or 12 weekly rounds of Taxol (T).  This is a standard breast cancer protocol.  The AC part will be the tougher one with fatigue, nausea (although they have tons of meds for it), mouth sores and hair loss.  I will lose my hair in about 2.5 weeks after starting.  T will be better. There is the potential for numbness and tingling in my extremities, which I know has become permanent for some people so hopefully I avoid that.  I likely will need a port-a-cath, which is implanted just below the skin between my breast and my shoulder to allow easy access to my veins, rather than sticking my arm each time. I am really not excited about that.  I'll need the chemo nurses to assess my veins to decide if I need one but Dr. Block said they are pretty routine these days. 

After Dr. Block took me through all the chemo information, I told her I was considering doing my chemo at Dana-Farber in Milford due to its proximity to home.  I REALLY like Dr. Block.  She is incredibly smart and great at explaining everything to me so it was really hard for me to essentially "break up" with her but she understood.  She did tell me that not all the doctors in Milford have always been "Dana-Farber doctors".  Some just moved over from the Milford hospital when Dana-Farber opened the location.  I told her Dr. Winer had a doctor for me who spends a day a week in Boston, so she seemed happy to know I would be in excellent hands. 

So, now we wait for Dana-Farber to come forth with their final recommendation and get the chemo planning going.  I hope to start the first or second week of November.  The sooner I start, the sooner I am done!

FRUSTRATION!

In my calendar for today was my 6 month check up with my oncologist at Newton Wellesley.  Obviously the whole "6 month checkup" is moot, but based on a discussion with Dr. Block a few weeks ago, we decided to keep the appointment to talk about where we are from a treatment perspective.  Dr. Block was on vacation October 1-20.  I was eager to talk to her about our meeting with Dana-Farber last week to see if Newton Wellesley's position on chemo had changed.

Last night at about 10pm, I realized that I had not gotten a call confirming the appointment and it was not showing up in the hospital's Patient Gateway.    I decided to just call and confirm before we made the 40 minute drive in the rain and it is a good thing I did.   When they squeezed me in back in September when I was first diagnosed, Dr. Block's office cancelled the appointment for today but no one told me.   I am NOT HAPPY and neither is Craig, who stayed home from work to come with me.   This is the 3rd thing that office has done to annoy me in the last few weeks.  (The first 2 relate to taking DAYS to get back to me with answers to relatively simple questions.  In fact, one of those questions I called about last Thursday and I STILL don't have an answer.)

I am already doing radiation at Dana-Farber in Milford and have been thinking that it might make sense to do chemo there too (assuming I need it.)  It is 15 minutes away and it is Dana-freaking-Farber, the 4th best cancer hospital in the US according to US News & World Report.    Based on these latest developments at Newton Wellesley, it seems to make the most sense to change everything over.  I really like Dr. Block but I don't need frustration and admin annoyance right now.

Vent over...

On a positive note on Monday, I saw a nurse practitioner at the Breast Center at Newton Wellesley (that place seems to have its act together) and she says I am healing great from the surgery.

And the waiting continues...

I am not going to lie.  It is a little disconcerting to have a relatively well-known breast cancer doc open a conversation with you by saying, "I am not really sure what to do with you."   But that is where we are on the question of chemo.  I present an unusual case since the cancer "should not" have come back while I was on Tamoxifen.   Dr. Winer agreed that we did everything right the last time.  Even today, if my case from January 2011 presented itself, he would have suggested the same treatment (surgery and Tamoxifen, no chemo or radiation).   He is a doctor that, in patients with ER/PR+ and HER2- cancers, assumes no chemo.  There are NO statistics on cases like mine, so he can't tell me what my risk of recurrence is with and without the chemo.  He can only guess, but his gut is saying we will get enough incremental benefit for it to be the right move.   Craig and I obviously are pretty upset at this new development but we want to do what the doctor's recommend, since my risk of another recurrence is definitely higher than it was after the primary incidence in 2011.

So next steps are as follows:

• Dana Farber will obtain my pathology slides and perform their own analysis.  Dr. Winer does not think there will be any changes but he wants to confirm there is absolutely no breast tissue in the sample and no evidence of DCIS (non-invasive cancer).   If either are present, it would indicate this is a new primary cancer and not a recurrence.
• On Tuesday, October 28, all the doctors at Dana Farber will meet in their weekly "conference" and my case will be presented to see what others think about the chemo question.  (Dr. Winer is away next week and the pathology probably would not be done anyway.)

So we wait for probably 2 weeks for a final decision to be made.  If I were to have chemo, it would start ASAP and would be 8 cycles in total every 2 weeks - so 4 months overall.  I'd have a 2-4 week break and then start 6 weeks of radiation.  We'd be looking at a May end date.   Still hoping we won't have to do chemo, but trying to prepare myself for the worst case scenario.

After all that, I would go on the ovarian suppression shots and take an aromatase inhibitor for the foreseeable future!

I plan to drink a bunch of wine tonight!

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.