Pretty good news, all things considered...

We just got home from Dana Farber and I think we are feeling encouraged by her impression of thngs.  My tumor load is very small, thanks to my insistence on frequent tumor marker testing and follow-up PET/CT scans.  Dr. Chen tried to feel the nodes that lit up the PET, and she couldn't - they are still very tiny. 

We talked at great length about clinical trials and there really isn't a good one for me at the moment.  We discussed using Carboplatin or Xeloda, and decided that Xeloda was the way to start.  It's an oral chemotherapy with supposedly minimal side effects.  I'll start taking it when we return from Paris; and after two months, I will be scanned again to see if it is working.  If so, I'll continue on it until... who knows.  If the mets are still present or if there is any progression, we will move on to Carboplatin. 

I think the best way to describe this is that it will be treated like any other chronic disease.   I have diabetes - I take daily metformin; I have metastatic breast cancer, I'll take daily chemo.  

Let's hope that like a fine broadway musical, Xeloda gets a nice, long run!

We are only given today and never promised tomorrow...

I've been trying to figure out a good way to start this off; and the right words have escaped me.  I saw the graphic above on someone's Breastcancer.org post and I thought it might be a good message to start with.

I got the results of my PET scan from last Friday and it's bad news. Really bad news. I have metastatic breast cancer, Stage IV if you will. Here are a couple of excerpts from the formal report:


Neck: A few subcentimeter hypermetabolic left supraclavicular region lymph nodes are seen, new from the prior exam.

Abdomen/pelvis: There are a few small ill-defined foci of increased activity seen along the inferior edge of the left lobe of the liver not seen on the prior exam. It is not clear if these relate to activity from adjacent bowel or relate to small/early liver lesions.

Chest: There has interval appearance of several bilateral pulmonary nodules demonstrating metabolic activity, consistent with metastases. The largest is seen inferiorly in the left lower lobe measuring a centimeter in size. There has been interval appearance of a 1.3 cm area of hypermetabolism in the posterior mediastinum compatible with a metastatic node. A new approximately 2 cm hypermetabolic lymph node is seen in the high deep left axillary region.

IMPRESSION: Interval appearance of pulmonary and nodal (axillary, supraclavicular and mediastinal) metastatic disease. Some activity is seen along the inferior edge of the left lobe of the liver and it is difficult to discern whether this relates to early/small liver metastases or adjacent bowel activity though bowel activity is felt to be more likely.  

I have an appointment this Friday with Dr. Wendy Chen at Dana Farber.  She is the first DF oncologist I met with a year ago.  My local oncologist said that Dr. Chen will probably recommend a course of chemo using platinum drugs, which have been shown to be more effective against triple negative breast cancer.  We will also explore clinical trials.  I have seen a couple that appear to be worth considering. 

Some of you know that we are planning a trip to Paris, leaving a week from Friday (5/25).  The trip is on regardless... I feel fine, I'm hopefully getting my knees injected with steroids on Monday so I can walk pain-free, and we'll be pushing Allison around in a wheelchair, which will force us to take our time, take it all in, and make some beautiful memories. 

Speaking of Allison and a wheelchair, here's the story...she fell last Saturday while we were walking from her graduation ceremony to a reception in a park two blocks away.  She had on sensible shoes but hit some uneven pavement, her left ankle rolled, and her right knee took the full force of her fall.  It's a clean fracture of her kneecap, but debilitating nonetheless.  She is using an immobilizer and crutches and learning more than she ever wanted to know about handicap accessibility.  I am staying with her during the day to make things a little easier.  And fortunately she is able to work from home, so things are OK. 

So getting back to my situation, I'm prepared for another round in my war against this nasty beast called breast cancer.  Two years ago I didn't think I had it in me to take what comes with treatment, but I've learned a lot about myself, my own strength, and the strength that comes from loving family and friends. 

Breast cancer just doesn't let you forget...

It was a nice little "honeymoon" of no tests, treatments, doctor appointments and all the other "stuff" surrounding breast cancer.  But, I guess the party is over for the moment and I'm back to the waiting and worrying games. 

I saw my medical oncologist this past Wednesday and she ordered the routine lab work, including the CA 27.29  tumor marker test.  I got the results on Friday (such a nice little birthday present) and my markers have gone from 31 to 55.8.  With normal being below 38, I am now scheduled for a PET scan on 5/11 to see whether or not more trouble is brewing.  Many oncologists don't order this particular tumor marker test, because it has a nasty habit of giving false positives.  For me, it has tracked with cancer activity so it cannot be completely ignored.  I feel fine, no unusual aches or pains, my metabolic panel and CBC labs all look very nicely routine, and there is nothing that seems suspicious.  Except the tumor markers. 

As a family, we are getting good at "compartmentalizing" this stuff.  Anyone remember the press using that word when President Clinton was going through the Monica Lewinsky debacle?  Everyone wondered how he could focus on being president and they talked about his ability to block it out.

"Compartmentalization is an unconscious psychological defense mechanism used to avoid cognitive dissonance, or the mental discomfort and anxiety caused by a person having conflicting values, cognitions, emotions, beliefs, etc. within themselves. Compartmentalization allows these conflicting ideas to co-exist by inhibiting direct or explicit acknowledgement and interaction between separate compartmentalized self states."

Yup, we're all getting pretty darn good at this.  Or you could call it floating down the River DeNile.  In any case, I'm doing a lot of fun things and not letting this get in the way of living my life.  And taking a sleeping pill at night when it's much harder to distract myself from the obvious anxiety. 

On a much lighter note, I had a fabulous birthday celebration with my family.  It's the first time that I've been able to celebrate with the grandkids, and it was a blast!  They enjoyed the Japanese steakhouse and cooking show.  And afterwards, the kids and I hit a local karaoke bar for some dancing and singing.  Hey, it's pretty cool that my kids are willing to be seen in public with me on the dance floor!!!

Our trip to Paris is coming together nicely.  We will leave on May 25th and return on June 4th.   I am going to start a separate blog with trip details, plans, what to see and do, pictures and food/restaurant reviews.  Oh yes, it's going to be magical!

Time to heal, time to relax

Done!  After almost $500,000 in medical billings and innumerable doctor appointments, biopsies, surgeries, chemo treatments, radiation, and thousands of miles, I am done. 

Radiation turned out to be a lot harder than I expected.  It may have been at least equal to if not harder than chemo, which I would never have expected.  Because of the daily grind of commuting to Boston every day, and the fact that my skin broke down towards the end, it was not the "easy part" of treatment.  My skin is still sprouting new open areas and I have sore ribs, tight muscles and a swollen chest.  I'm sure it will improve soon.  The good news is that I seem to have escaped any extreme fatigue.  Must be those pre-natal vitamins (which are also helping my hair grow pretty fast).

It's time to get on with life!  We are planning a trip to Florida in February and then our big splurge will be Paris with our daughters in late May.  At the moment I am enjoying not planning around the next doctor visit or treatment.  I do have a follow-up visit with my medical oncologist next Wednesday, which I fully expect to be routine.  I'll see the Plastic Surgeon the first week in March and a follow-up appointment with the Radiation Oncologist in June.  Hey, the whole month of February with no medical appointments...how cool is that after 20 straight months?!? 

I couldn't have done this without the love and support of all my family and friends.  I felt your presence throughout this entire ordeal.  I hope we never have to do this again, but you all made the journey so much easier. 

Don't be surprised if I don't post much between now and when I get going on reconstruction later this year.  In this case, no news is definitely good news! 

With deep gratitude for your love, friendship, prayers, healing and positive energy,

Michelle

Almost done!

Today was our 25th trip to Dana Farber for radiation treatments.  I cannot believe how lucky we have been with traffic and weather.  Not a single flake of snow has fallen during our commuting, and we had some drizzle on one trip. 

I have finished with the "full treatments" and now have five boosts to go.  These will be done to the scar area as it is where recurrences tend to happen.  My skin is a mess in the area where the electron beam was zapping my mammary  nodes.  I have second degree burns (about the size of the palm of my hand) and yesterday the Radiation Oncologist decided to change the radiation to the photon type (which is the "usual" treatment) because it is less abusive to the skin.  I have a big supply of Cuticerin gauze (which is impregnated with Aquaphor), tubes of Aquaphor and large abdominal pads to protect my clothes.  It will heal in a couple of weeks.  The rest of my radiated skin has held up well and looks tanned but nothing else is red or sore.

Assuming I am not speaking too soon, I seem to have escaped the fatigue that so many women experience.  Maybe it's because I am not working and I don't "have" to do anything on any specific day.  Or maybe I'm just wired differently.  Or maybe it's those prenatal vitamins I have been taking since my blood counts plummeted during chemo. 

After twenty months of continuous doctor visits and treatment for breast cancer, I am looking forward to the end of active treatment and the month of February, which I have declared a "doctor-free" month.  No treatment, no follow-up visits, nothing, notta...  Just a little trip to the warmer climes of Florida! 

Mammosite may not be as effective as traditional whole breast radiation

This year's San Antonio Breast Cancer Symposium has produced some disturbing news regarding brachytherapy, and specifically the Mammosite radiation protocol that I underwent in July 2010.  It may explain why I am still fighting the beast...

SAN ANTONIO (EGMN) - Accelerated partial-breast brachytherapy, delivered as part of breast-conserving therapy for early breast cancer, was associated with twice the mastectomy rate when compared with standard whole-breast irradiation in a large study.

Moreover, accelerated partial-breast brachytherapy entailed substantially higher rates of both acute and late complications, Dr. Benjamin D. Smith said in a presentation of the study findings at the San Antonio Breast Cancer Symposium.

Investigators reviewed Medicare claims data for all 130,535 beneficiaries whose early breast cancer was treated with lumpectomy followed by adjuvant radiation during 2000-2007. The use of accelerated partial-breast brachytherapy in this population rose from less than 1% in 2000 to 13% in 2007.  The incidence of mastectomy during 5 years of follow-up was 4% in 7,291 brachytherapy recipients, compared with 2% after whole breast irradiation (P less than .001). Upon adjustment for the brachytherapy recipients' older average age, more comorbid conditions, and lesser rate of positive axillary lymph nodes, brachytherapy was associated with a 2.2-fold increased risk of losing the treated breast within 5 years, reported Dr. Smith, a radiation oncologist at the University of Texas M.D. Anderson Cancer Center, Houston.

"When we adjusted for various clinical and sociodemographic factors, to our surprise brachytherapy was the variable that had the strongest correlation with the risk of subsequent mastectomy," he noted.
Partial-breast brachytherapy was also associated with significantly higher rates of postoperative wound infection and acute noninfectious complications as well as increased 5-year rates of fat necrosis and breast pain. Fat necrosis is considered a marker of tissue injury caused by surgery and/or radiotherapy.
Within 1 year of breast cancer diagnosis, infectious complications involving breast or surrounding skin or soft tissues occurred in 16% of women treated with brachytherapy vs. 10% of those who received standard whole breast radiation.

Noninfectious complications including surgical wound breakdown, postoperative bleeding, or seroma formation were twice as common with brachytherapy at 16% and 8%, respectively.
Five-year rates of fat necrosis (9% vs. 4%) and breast pain (15% vs. 12%) also were higher with brachytherapy.

Accelerated partial-breast brachytherapy was developed to address the shortcomings of whole-breast irradiation, the historic standard of care, which entails up to 7 weeks of daily Monday-through-Friday treatment. Whole-breast irradiation is inconvenient. Indeed, it's such a hardship, especially for patients in rural areas distant from a radiotherapy center, that some women opt for mastectomy as a matter of convenience. Moreover, 15%-30% of women who undergo lumpectomy forgo prescribed radiation therapy, placing themselves at increased risk of local recurrence.

Accelerated partial-breast brachytherapy may improve patient compliance with radiotherapy. It shortens the treatment course to 1 week. It entails temporary placement of radioactive beads within the breast via a catheter system. This method delivers radiation only to breast tissue immediately adjacent to the lumpectomy. This technique is but one of several forms of partial breast irradiation, however; the new findings don't apply to 3-D external beam radiation, for example.  Accelerated partial breast brachytherapy has boomed in popularity in recent years, especially in community practice. But these new data may put the brakes on that trend.

"This study has changed the way that I think about these two different treatment options, and it's changed the way I practice," Dr. Smith said in an interview.  Dr. Jennifer A. Ligibel, who chaired a press conference where Dr. Smith presented his findings, said the study carries an important message: "Although observational data using a claims database are no substitute for a randomized trial with long-term follow-up, what we see in this study is that this technique was not as effective and it was also associated with a lot more complications. So if your argument in using this is that it's sparing patients from additional problems, we're not seeing that in this study." 

"I think this study really does give pause to the incorporation of accelerated partial-breast brachytherapy into routine clinical practice. These results should make people wait for the results of the ongoing randomized trials before they offer this as a standard procedure for their patients," added Dr. Ligibel of Dana-Farber Cancer Center, Boston.

The major randomized trial underway is the National Surgical Breast and Bowel Project B-39/Radiation Therapy Oncology Group 0413 study. The NSABP B-39/RTOG 0413 trial has enrolled 4,000 of a planned 4,500 patients with early breast cancer. The emphasis is on patients under age 50, since they have a higher local recurrence risk than older women. Participants are randomized to whole-breast radiation or various forms of partial breast irradiation after lumpectomy. Mature results aren't expected until mid-decade.

Dr. Smith and Dr. Ligibel declared having no relevant financial interests."

No one told me this wasn't a proven technology.  Everything I read at the time led me to believe that recurrence rates were lower than standard radiation procedures.  Now I know why the first Dana Farber medical oncologist that I saw last May stated that they would have talked me out of Mammosite...they don't offer the procedure.  Apparently Johns Hopkins has been steadfast in their opinion that brachytherapy was not a reliable protocol. 

Now there are thousands of women, mostly 50 and over with early stage breast cancer, who were treated with brachytherapy and will worry that they will become one of the "failures" and face additional treatment because of a recurrence, infection or other complication.  

Am I an example of brachytherapy failure?  Quite possibly.

My hair is growing quickly, radiation is going well, and the tree is up!

I had a little fun with my hair growth pictures today.  You can see that I now have just about what I had when I got it cut just before starting chemo.  The back is coming in nicely and while I said back in June that I wouldn't color it...I've had a serious change of heart!  I'm loving the reddish brown color, thanks to L'Oreal.  And at about $7 a bottle, it's a whole lot less expensive than the $75-100 salon coloring that I had in the past.  It's nice to see the hair on the back of my neck reaching my collar!  Back in April, I couldn't imagine being finished with chemo and now I am 10 weeks beyond it.  Time certainly is flying by!

I had my first radiation treatment a week ago, so today will be #6.  So far, so good.  The traffic has been relatively cooperative and I am not having any side effects.  I meet with the radiation oncologist weekly (on Tuesdays) and he said that I shouldn't see any skin changes for two more weeks.  In the meantime, I am moisturizing twice a day with Moisturel, which was on the list of recommended products.  I think the ingredients are very similar to Aquaphor, which many patients use and was also on the list.  I've been using Moisturel on my face and dry areas like elbows for 20 years, so I had it handy. 

My appointment times have been pretty good so far.  We started with 7 p.m. treatments last week, then they quickly changed to 6 p.m.  The drive in to Boston has been good every time except last Thursday when there was a holiday tree lighting ceremony and Rte 93 and Storrow Drive were backed up for a few miles.  Even so, we made it to Dana Farber in just about 90 minutes.  Most days it's taking just over an hour.  Tonight's trip may be ugly - it's been raining all day and I heard traffic was a mess.  My only hope is that everyone is already in the city and will be trying to get out while we are coming in.  After treatment tonight we are meeting friends for dinner in Quincy, which is a bit to the south.  I am going to find us a route that keeps us off 93 and on surface roads as that may be a better option.  By the time we eat and head for home, we should be in the clear.

Many of you know that for the past few years we've ordered a Christmas tree and had it shipped from NH to MO and the trees have been beautiful.  Well, this year we took a little road trip to Colebrook on the Saturday after Thanksgiving with our friends Ann & Jack.  After spending the night at the Omni Bretton Arms across the way from the Mt. Washington Hotel, we drove to Weir Tree Farm and chose our tree.  The nice folks at the farm cut it for us and hauled it down to the barn area, where they shook all the needles out of the tree, tied it up and secured it to the roof of the car.  It was fun to see the tree farm, which was huge - Christmas trees for as far as the eye could see.  They sell about 10,000 trees each year between wholesale, mail order and choose and cut customers.  I do believe this will become an annual tradition for us.  We had a fabulous time with our friends, the food was delicious, the view was spectacular and the tree is spectacular. 

Yup, it goes all the way up to the ceiling - almost 9' of Fralsam Fir and it completely blocks the use of the fireplace...lol.  It took me about 7 hours to decorate it, and it was worth every minute of my time.