Survivor Guidelines for a Survivorversary

Today is the 3 year anniversary of finishing chemotherapy. It is also the first day I have gone to work and not done something fun in the past 2 year. Unfortunately, it didn't work out with my work schedule to take today off, but I still made the most of it. And by most of it, I mean I read the new American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline. Do I know how to party or what? If you too want to be party animal you can read the full text here.

These guidelines are great step towards offering more standardized care and ideally helping to increase breast cancer survivors quality of life. In literature quality of life is often abbreviated QOL and it is such an important marker. The guidelines I also found to be quite comprehensive, so let's review some of the ACS/ASCO recommendations.

Follow up in the post treatment phase, the authors recommend a detailed history and physical every 3-6 months for the first 3 years, then every 6-12 months the next 2 years and then annually every year after with your oncology team. I think this will actually help people with the sudden drop off in appointments, also, after treatment. It can be a little jarring to go from weekly/monthly appointments down to nothing. It's also nice to know that at some point the frequency of trips to the doctor does drop off. That does help with the whole QOL

For screening for recurrence, lab tests and imaging and signs of recurrence the overall recommendation is that the oncology team SHOULD NOT offer routine lab tests or imaging, besides mammography, in patients who have no symptoms. The article goes on to state that patient's should be counseled on the signs of recurrence. These guidelines do not recommend that patients have MRIs as follow ups unless they are at high risk for recurrence (such as BRCA positive), because of the tendency for the amount of false positives. I found this fascinating that an annual mammogram may be enough screening as long as your not having any symptoms. I wonder if there is hope for me and not having to drink mochaccino flavored barium once the PRESENT study is done. It didn't mention anything about CT scans.

One of the major difficulties for breast cancer survivors is to continue on their endocrine treatment, or in my case tamoxifen. These guidelines offer concrete guidelines on how to lessen the side effects and hopefully increase the compliance. Many of the ways that musculoskeletal pain and neuropathy can be combated is through exercise. The guidelines recommend:
150 minutes of moderate or
75 minutes of vigorous aerobic exercise per week
and
strength training exercise twice a week. 

So as I was reading this as I skipped my run this morning as my plantar fasciitis has flared up, but it is important to find a way to keep moving.  Moderate exercise would be walking, vigorous would be running. (For more information on the difference, see the american heart association's definitions here)

Another major side effect that puts breast cancer survivors at higher risk for recurrence is being overweight/obese. I found the statistic astounding that 61% of breast cancer survivors were overweight with 30% being obese. I hear all the time the importance of maintaining a healthy body weight and how the breast cancer treatment can make people gain weight, I just didn't realize how many were struggling with this recommendation.

The guidelines outline a basic diet that all human beings should follow without specific recommendations re:soy or flax. They recommend a diet:
High in Fruits, Vegetables, Whole Grains and legumes and low in Saturated Fat. The dietitian in me was not surprised to read this. This is the general diet that most of the world should follow. And then I got off the bus and ate a cinnamon roll. Because I'm human. (And then followed it with plain nonfat yogurt and berries, for balance) And they recommend limiting alcohol to at most 1 serving/day. Some studies have shown reducing alcohol to less than 4 servings per week to be beneficial, but there was not enough information for the authors to fully comment on that.

Many of the recommendations were for post menopausal women as they make up the largest group of breast cancer survivors, but one particular recommendation was made. A baseline DEXA scan should be done to check your bone health. Apparently, chemotherapy and long term SERM (drugs like tamoxifen) can decrease your bone density and put you at higher risk for osteoporosis. Good to know.

The other major QOL recommendation that these guidelines made was to address FOR. Fear of Recurrence. FOR is real and palpable sometimes. Some of my cancer friends are often paralyzed by it, so it is good to see it being addressed in the guidelines.

The bottom line for me
1) Keep my bottom line in check (i.e maintain a healthy weight)
2) Continue to eat a heart health diet (cinnamon rolls not withstanding)
3) Just keep running or moving or dancing
4) I need to add an additional weight lifting day in as I currently only get one
5) I'll keep taking my 1000 units of vitamin D3 daily for my bone health
6) I'll have to ask my oncologist if I should be getting a DEXA scan? (to check my baseline bone health, ugg do I really want to ask for more tests)

and most importantly

7) Don't let the FOR ruin your QOL

(I think I need a bumper sticker that says this. Except for that I don't drive. Maybe the MBTA would let me put it on my bus.)

Tis the Season to be Grateful

I love Thanksgiving. It combines many of my favorite things; family, food and sharing gratitude. I haven't been writing in my gratitude journal on a regular basis, but when I am having a down week I write in it for a couple of consecutive days. I also write in it when there are things happening in my life that I truly feel grateful so that when I go back and read it I can remember the feeling I had that day/week/month.

In honor of Thanksgiving I went through and found a random sampling of things I have written in the past 6 months;

4/27: Today I am grateful for CLEAN SCANS!!
You betcha. If nothing else, I will be thankful every day for my health.I have multiple entries about being grateful for modern medicine and the excellent health care team and treatment I receive. I also, continue to be grateful for all of those people who came before me and tested out my chemo, radiation and surgery. It is what drives me to continue to be an active participant in the PRESENT trial and send my blood around the country.

3/30: Today I am grateful for peanut butter
Yeah, I have a bunch of posts about being grateful for certain foods. Ginger made an appearance the past couple of weeks with my stomach issues. But, as well documented nothing tops my list more than my Mom's mashed potatoes.

8/21: Today I am grateful for my co-survivors 
Honestly, I don't remember why I was so grateful on this particular day for my friends and family, but I do remember everyday why I am grateful for such a strong support system. My co survivors are always willing to lend an ear, offer advice or continue to offer encouragement.

9/18: Today I am grateful for the anticipation of vacation 
I have been pretty fortunate to have a job that allows and encourages for ample time off in a year. I have gone to have fun with my niece a couple of times this year, took a trip to Florida with the BF and done multiple little mini trips.

6/15: Today I am grateful that baking remains a stress release 
Since last Thursday I have made 17 dozen cookies and two cranberry pumpkin coffee cakes with cinnamon streusel. I'm feeling pretty relaxed headed into the holiday. Nothing like baking with your music blaring to put you in your happy place.

Today I am grateful for keeping my gratitude journal. 
It really puts you in the holiday spirit to read all the people, things and ideas you've been grateful for through out the past 6 months. It's an excellent mood elevator.

Happy Thanksgiving!

Point of Reference

My heartburn/stomach issues have flared up, hard, lately. Things hadn't really got any better since I saw my oncologist at the beginning of October. Things have been particularly bad the last 3 weeks.  And by bad I mean I was only eating twice a day and often skipping dinner or chugging maalox instead of eating anything. I even busted out my dentist forbidden stash of ginger chews. About a week ago, I really had had enough. I made an appointment with my PCP in hopes to being sent to see a gastroenterologist. Unfortunately, my PCP was not available and I was sent to see her physcian assistant. Her PA was everything you could hope for in a healthcare professional. She had already read through my chart and picked out all the instances when I come in for my heartburn. She was curious if this was worse with the tamoxifen (oooh, can I blame this on tamoxinfen...wait I hope not because I have 7.5 more years to go). I explained how this has been worse since I had the 4 rounds of chemo and let her know that currently...

"I feel like I did after the fourth round of chemo"

She paused. Looked at me and stated "That is an excellent point of reference. Let's get you in to see GI. You should not feel that way". I explained that I was concerned because my blood levels had been low when I saw my oncologist and I was concerned that they might be lower. I let her know that it was just my stomach that felt like it was post chemo, and my energy level is good.  She took this all into consideration, but she sent me to have my iron levels tested again. Turns out, I am iron deficient. I am down a couple of pounds, but the new medication seems to be working. I am back eating 3 meals a day + snacks. I do not have constant burning. I am looking forward to meeting with the gastroenterologist and seeing if there is anything else I can do. And hoping that I can get my belly up and running in time for mashed potatoes Thanksgiving. I also aspire one day to not be Ralph.

To The Person Just Diagnosed with Breast Cancer

Dear Newest Breast Cancer Friend,

Welcome to the club you never wanted admission to. I know it's a scary time for you. When those bastard cells betray you and the clinician tells you "It's Breast Cancer" there are many things you want to know, many things you think you know, and many things you should know.

Your path is your own. Some people have double mastectomies, some people have lumpectomies, some people have no surgery at all. Some folks have radiation, some have chemo, some have hormone treatment and some have it all. Find a surgeon and oncologist that you have faith in. Trusting the information you are being provided is very important. It is also important to look for quality in your research. Yes, you want to weigh your options, but make sure you are using a trusted source.  Preferably your information and resources should come from your medical team,  but if you are going online I recommend breastcancer.org, cancer.org or drsusanloveresearch.org and not some crazy internet blogger. Reading about every single scenario can make a scary time even scarier. If you find you can't keep yourself off the internet, try not to do your research in the middle of the night when your overtired. It can lead to you misreading and misinterpreting information and keep you awake longer than you need to be.

Recently, the folks at Cure Forward reached out to me to let me know about their new service to help build a cancer community around "precision medicine". Their idea is to help folks with cancer to tailor their cancer treatment around the genetics of their cancer. As someone who had her tumor tested multiple time for it's DNA (the PRESENT study just retested the level of the HER 2 in my tumor {which is kept where?} because they developed another, better test for the HER 2 expression) this sounds like a fascinating idea. It also is something I feel like other people should be able to have. My oncologist looked at the genetic profile of my tumor and was able to determine that it was intermediately aggressive and that helped her make the decision to provide me with only 4 rounds of chemotherapy and not more (for which I am very grateful). Here is a Boston Globe article with more information about the company which appears to be a great platform for connecting cancer fighters to the proper scientists.

Our Mother's raised us to be strong, independent women. That is all fine and dandy, but get ready for everyone you've ever met reaching out to you and offering help, kindness, encouragement or anything they can. At first, the hardest thing can be accepting help from other people, but do it. Let them all help, in whatever way you want or need. Hold on to all the cards and letters that people send you. I tacked them to my wall and when I was having a down day, I would read as many as I needed to get that smile back on my face. It often only took one. Or find other ways to get to your happy place; your favorite music or a gratitude journal can help you keep a positive attitude and keep you happy.

You're going to laugh more often than you think. A sense of humor goes ridiculously far in cancer treatment. As a Breast Cancer patient it can sometimes feel like there is a continuity of indignities that testing and examination provides. If you can look at your new scar and quote Monty Python ("It's merely a flesh wound") or hear the Star Wars version of "Call Me Maybe" in your MRI you'll find the entire process more bearable. Who care's what other people think. You do you. Whatever works for you and makes the process easier, do it. Having cancer allows you to be selfish, in order to fight you have to put you first.

Enjoy, and celebrate, the smallest of victories. "I completed my MRI today!". "I didn't make my Mother cry today!" "I woke up!" "I finally got that weird taste out of my mouth". Celebrate each milestone by doing something for yourself. I celebrated in a variety of different ways: running, eating treats, baking, buying myself Red Sox tickets.

Now hurry up and wait. Things can move agonizingly slow in the beginning. Remember, everyone needs a path and things will move once you have a starting path. Paths of care in cancer treatment are very flexible; your plan will morph and change as you work your way through treatment. The more data that is collected about your specific cancer will change the way you are being treated.

We're rooting for you. Go kick ass. 

Sara

The Penultimate Super Quad

In celebration of Breast Cancer Awareness Month I decided to turn my right quadriceps hot pink for a couple of days....

Friday was the next to last round of shots for the PRESENT trial. My 2.5 year shots. 2.5 years. Holy Crap! that's some pretty good progress.

Blood, Sweat and Urine

The appointment started out in the usual way. Blood work. This time they only required 4 tubes. Only four. Even more progress. The nice tech drawing blood got it flowing with a single stick. Things were going swimmingly. I give my usual urine sample and wait for the result to come back.

The test results come back and for the first time in a long time I do not have perfect labs. My oncologist lets me know that I am anemic. Hmmm, perhaps eating a mostly vegetarian diet and meat only twice a week did have some repercussions.

She asks me how my energy level is, I tell her that I am less tired than I was in July and that I think running in the morning helped. We talked about reflector vests and head lamps. She was totally going to try a head lamp for her morning runs.

After a physical exam, where she continues to monitor the spot in the scar that annoys her and hasn't changed in the past 6 months, I'm cleared to get my shots.

The research RN and I go into the infusion room where she has booked a chair for the shots and we wait for the new research pharmacist to bring the shots up. And then we wait some more.

And then she shows up to let me know that they screwed up in the compounding of injections and they had to throw out one of the four shots. She said they could re do them if I wanted or I could just get the three and file a breech in protocol.

I looked at the research pharmacist in disbelief. These are cancer vaccine shots. Why would I want to violate protocol? I already caused a side effect. I asked the research pharmacist to re do the shots. She agreed.

The research RN knew I must be hungry because we were now an hour past when my appoint was supposed to be over. She brought me cookies and water to tide me over.

And then we waited and waited and they finally brought up four syringes. And they forgot the needles. Um...did study protocol change? Should I inject them into my mouth now?

The intradermal needles are finally located. The research RN could not apologize more. And then she started injecting me and she was apologizing more. Friday the injections were like long slow bee stings. And my leg started to swell and puff pretty quickly after (as it usually does).

The return of Super Quad 
That night and most of the next day I looked like I had a quad implant on my right thigh. I found spandex to the most comfortable pants for the day, but they very much accentuated the difference between the two legs. I may or may not have obsessively compared my two thighs through out the day.

By Sunday the super quad was down to a slightly inflamed quad and was less pink. By Monday all the swelling was gone and the four injection sights are just itchy and discolored. And that's the way it remains today.

Being a test subject in a clinical trial to help prevent the recurrence of breast cancer, now that's one way to celebrate the Boob-tober.

Making Strides Against Breast Cancer Boston 2015

Mom and I did the American Cancer Society's Making Strides Against Breast Cancer walk this past Sunday. It's a great event that raises money for research, support programs for patients/survivors and support to families of cancer patients. I also enjoy that they have a Survivor tent that you can visit and get a sash to wear while you walk. As you walk the volunteers always shout out when the see a survivor. It's fun. It's also great to see all the fellow survivors out there. You get a lot of "nods". 

My mother's favorite part is when we have completed the walk and were headed back to the subway. There are still lots of people streaming in, so we walk single file with myself in front. She enjoys watching the people discover that breast cancer affects young people too. She laughs at some of their reactions to seeing my Survivor sash. She is unable to count how many people are shocked by my age. I take comfort in my presence spreading awareness. 

Thank you to everyone who came out or raised money for the American Cancer Society. I hope to see more and more Survivor sashes and less tribute t-shirts every October. 

In Celebration of Boob-tober

Welcome to October. Welcome to the pink coated month that tries to sell you everything and anything in the name of breast cancer awareness. And I present to you in celebration of breast cancer awareness month, what is new out there in the science and treatment of breast cancer.

Intraoperative Radiation Therapy (IORT) 

IORT is the administration of a single dose of radiation at the same time as a lumpectomy. This means that the post op radiation treatments are not needed. It saves the patient skin damage and 30 to 33 visits to the radiation oncology suite. It also does not have the rare side effects of the radiation affecting your heart, lungs or ribs. It is also more cost effective as it costs about $3,500 less than a lumpectomy with standard radiation treatment. Did you know that nearly 1/3rd of patients don't finish their radiation treatments? I can't even imagine not finishin.

Why this could revolutionize breast cancer treatment
60% of all patients diagnosed with breast cancer have early stage breast cancer that is treated with lumpectomy and radiation. This would dramatically cut down on the length of a patient's cancer treatment. Instead of lumpectomy + time to heal + 6 weeks of radiation, it now becomes have a lumpectomy plus IORT on Monday go back to work by Thursday. That's pretty amazing.

Is it just as effective? 
Here in lies the controversy. In the major study done with 1,000 patients the 5 year risk of recurrence for those who received IORT was 3.3% vs 1.3% for those who received standard treatment. That seems fairly close. However, those who received IORT were only followed for 29 months, which if my math is correct, happens to be a little short of the 60 months that make up 5 years. Also, because oncotyping doesn't occur until after the lumpectomy those patients who were found to have more aggressive cancer then received more radiation post operatively,  but were included in the IORT data.

Bottom Line
Very promising change in treatment that could effect the quality of life of early stage breast cancer patients who need lumpectomy and radiation. True recurrence risk data is still needed, meaning more time is necessary. But, definitely something to keep an eye out for.

I will also be celebrating Breast Cancer Awareness month be getting my 2.5 year Vaccine or Placebo shots in my thigh. I'll be sporting a giant pink quadriceps. In the name of breast cancer science and the advancement of treatment.

Source: Beck, M. (2015, August 25). New Way to Use Radiation In Treating Breast Cancer. Wall Street Journal, p D1.