CBS News did a story on one of my new heroes. She is 36 years old, has been fighting Stage IV Breast Cancer since 2011 and has not yet lost her sense of humor. In fact, she took it one step further. She is doing stand up comedy about having cancer. Love it. In the piece their are some jokes where the audience is uncomfortable, but to this girl I thought they were all hilarious.
Nicole Osborne you have a new fan in Boston. I hope you do make those Christmas Cards that say "Still Here" for many, many more years.
The article and video can be found here so everyone else can be fans of hers too.
Tuesday, February 24, 2015
Sunday, February 15, 2015
The SOFT Study and how sometimes reading study results is emotionally hard
We are getting buried in snow here. Buried. 90+ inches since January 23rd. Public transportation often cancelled. Its been physically and psychologically taxing. We are inventing new words to describe the side effects of the snow: Snager, Snochosis, Snaddness. However, it has also left me with an additional feeling: gratitude. I am so thankful that the winter of 2013 was not like this. Having to go to radiation daily while wondering if your bus is going to show up? I feel for those who are in the midst of treatment right now. And I'm thankful to be where I am. Here are a couple of photos of my backyard this morning:
The Results based on the non-science portion of my brain
What! 1/3rd of those who are 35 years old or younger had a recurrence while on tamoxifen. That seems a bit high, right? That means about 15 women enrolled in the study had recurrence during the 5 year period. But, it says recurrence not death. So that is not great, but ok.
Also, not great to read was the overall survival of those who had had prior chemotherapy was lower than those who had not had prior chemotherapy (and was found to be statistically significant). I mean it makes sense because those offered chemotherapy usually have more aggressive disease. However, it is still hard to read. Especially, because again the very young subgroup 94% all had had chemotherapy.
Overall, like most studies more investigation is needed. But, very interesting implications for young survivors. For further recap of this study you can watch the video below produced by the Young Survival Coalition
When waking up to the midst of a blizzard I did what everyone else does. I made a batch of whole grain blueberry muffins and read the latest breast cancer study from the New England Journal of Medicine. (Citation: Francis PA, Regan MM, Fleming GF, et al. Adjuvent Ovarian Suppression in Premenopausal Breast Cancer. N Engl J Med 2015;372:436-446). This is known as the SOFT trial; Suppression of Ovarian Function Trial.
The basics
The SOFT trial randomized 3066 premenopausal women to receive 5 years of tamoxifen, tamoxifen plus ovarian suppression or exemestane (an Aromatse inhibitor, decreases the circulating estrogen level) and ovarian suppression. This study also did something that most studies have not done, they stratified their results based on subjects having needed chemotherapy vs not. This is a very important detail because most often those who have had chemotherapy are survivors who had more aggressive cancers, cancers that had already spread to the lymph nodes. The study followed the 3,066 women for 5 years and the primary end point they were looking at was disease free survival.
 |
| These are my notes. "* You bet your ass it is". Very scientific. And yes my pen is pink |
The Results
When the investigators did the large group analysis overall it was found that adding ovarian suppression to tamoxifen did not provide a significant benefit. Bummer, right? Well, the study found something that is worth further investigation. And its very important for what this study deemed the very young sub group. This is for women that were younger than 35 years. 233 such women were included in the primary analysis. And this is where the interesting part occurs. In this subgroup (my people!) the "rate of freedom from breast cancer at 5 years was 67.7%" on tamoxifen alone, 78.9% for those on tamoxifen plus ovarian suppression and 83.4% for those on exemestane plus ovarian suppression. Whoa. This clearly is underpowered, but does designated that further investigation into the true effects of ovarian suppression and its benefit should be studied in the "very young" sub group. The study authors write
With a median of 67 months of follow up the number of breast cancer recurrences observed was large enough to indicate that including ovarian suppression as a component of adjuvant therapy can meaningfully reduce recurrences in this cohort.I know that one study does not make treatment plans, but this is exciting stuff. However, it may be a little premature in follow up as perhaps 5 years is too short a time. This study was pretty rigorous in design and removed the previous confounder that is present in many other breast cancer studies and that is the treatment with or without chemotherapy. Also, an important part of this study was the definition of all the patients as being premenopausal. The study defined premenopausal based on estradiol blood levels (estrogen in the blood) and not on the presence or absence of menses.
The Results based on the non-science portion of my brain
What! 1/3rd of those who are 35 years old or younger had a recurrence while on tamoxifen. That seems a bit high, right? That means about 15 women enrolled in the study had recurrence during the 5 year period. But, it says recurrence not death. So that is not great, but ok.
Also, not great to read was the overall survival of those who had had prior chemotherapy was lower than those who had not had prior chemotherapy (and was found to be statistically significant). I mean it makes sense because those offered chemotherapy usually have more aggressive disease. However, it is still hard to read. Especially, because again the very young subgroup 94% all had had chemotherapy.
Overall, like most studies more investigation is needed. But, very interesting implications for young survivors. For further recap of this study you can watch the video below produced by the Young Survival Coalition
Monday, February 2, 2015
Your labs are better than mine!
As part of the PRESENT trial today was my 21 month (holy crap we're getting close to two years!) follow up. It involved 4 tubes of blood, some urine and a physical exam. Easy peasy.
I was nervous about my blood draw today, only because the last time I ate salty foods I had some trouble with the blood draws. No such issue today. The woman in the lab recognized me and said, "Well, we haven't seen you in a while.". "I know, isn't it great?" "It's awesome". Got to love mini celebrations with staff that you've seen for 2.5 years.
Today was just a check up and to follow up on updates to the consent forms for the studies. One update I knew was coming down the pipeline because as we know I am a proud owner of a side effect. It was interesting to read that there have been 5 severe reactions (this was the update). An allergic reaction, chest pain, back pain (2) and syncope. Oops. So it really was just me who did that. Well I shall wear the honor proudly. Also, they updated the consent form to say that at least 300 people have had at least one dose of the vaccine. Up from the 100 when I originally enrolled. Progress! Yay science!
A separate update to the consent form to send my tumor tissue out for more testing. More testing, of course. I like to send my blood across the country let's send some tissue too. I didn't know this test existed so, it was interesting for me to learn. They were sending the tissue to have the HercepTest done. I asked the research NP if the name implied that they are checking for the amount of the HER2 protein that helps decide if the patient should get Herceptin the chemotherapy? She told me yes, and they give it a score. The same way they oncotyped my tumor that helped make the decision that chemotherapy was in my best interest. Again, another example of how smart cancer treatment is becoming.
All the new paper work was signed. My side effects were reviewed with my Oncologist. We discussed the new ovarian cyst and occasional joint aches and muscle pain, but overall no complaints. Knock on wood I have not had any hot flashes. She did a physical exam where we chatted about the upcoming implementation of our new electronic medical record. Then she pulled out my labs. Not a single, solitary value out of limits. Everything WNL (within normal limits). She said "Your labs look better than mine!". Always, always a nice thing for a cancer survivor to hear.
There was however one side effect I didn't review with her. Fatigue. This is because I know the cause of it. The New England Patriots are Super Bowl Champs again and it was too darn hard to sleep after that great of a game. It's important to watch everyone of Brady's touchdowns again. It's important to see Bellichick smile (sorta) while he raises the trophy. Too much fun.
I was nervous about my blood draw today, only because the last time I ate salty foods I had some trouble with the blood draws. No such issue today. The woman in the lab recognized me and said, "Well, we haven't seen you in a while.". "I know, isn't it great?" "It's awesome". Got to love mini celebrations with staff that you've seen for 2.5 years.
Today was just a check up and to follow up on updates to the consent forms for the studies. One update I knew was coming down the pipeline because as we know I am a proud owner of a side effect. It was interesting to read that there have been 5 severe reactions (this was the update). An allergic reaction, chest pain, back pain (2) and syncope. Oops. So it really was just me who did that. Well I shall wear the honor proudly. Also, they updated the consent form to say that at least 300 people have had at least one dose of the vaccine. Up from the 100 when I originally enrolled. Progress! Yay science!
A separate update to the consent form to send my tumor tissue out for more testing. More testing, of course. I like to send my blood across the country let's send some tissue too. I didn't know this test existed so, it was interesting for me to learn. They were sending the tissue to have the HercepTest done. I asked the research NP if the name implied that they are checking for the amount of the HER2 protein that helps decide if the patient should get Herceptin the chemotherapy? She told me yes, and they give it a score. The same way they oncotyped my tumor that helped make the decision that chemotherapy was in my best interest. Again, another example of how smart cancer treatment is becoming.
All the new paper work was signed. My side effects were reviewed with my Oncologist. We discussed the new ovarian cyst and occasional joint aches and muscle pain, but overall no complaints. Knock on wood I have not had any hot flashes. She did a physical exam where we chatted about the upcoming implementation of our new electronic medical record. Then she pulled out my labs. Not a single, solitary value out of limits. Everything WNL (within normal limits). She said "Your labs look better than mine!". Always, always a nice thing for a cancer survivor to hear.
There was however one side effect I didn't review with her. Fatigue. This is because I know the cause of it. The New England Patriots are Super Bowl Champs again and it was too darn hard to sleep after that great of a game. It's important to watch everyone of Brady's touchdowns again. It's important to see Bellichick smile (sorta) while he raises the trophy. Too much fun.
Saturday, January 24, 2015
Simple. And the size of an Apple.
#Deflategate.
Anyone else tired of this story? Well as a tried and true Patriots fan I sure am. Can I tell you what I would like to deflate? My apple sized ovarian cyst. Thank you tamoxifen. At least I know your working? The sports headline is slightly misleading. I'm going to be talking about pelvic exams and the gynecologist. Feel free to stop reading.
Cut back to December and multiple doctor appointments for vague lower abdominal pain. The pain was pretty non-specific and not sharp. Just dull and crampy. The "nice" thing about having cancer in your breast is that your physical exams of the area are less intrusive as you only need to take your shirt off. Granted someone else is trying to squeeze the life out of you and you have small moments of panic if they spend too long on one area. However, in order to evaluate for ovarian cysts involved a couple of pelvic exams (I mean who doesn't look forward to these) and a whole new barrel of fun known as a transvaginal ultrasound.. While having yet another new member of the gynecology staff physically palpate my ovaries internally I did find a moment to be grateful that the "women's cancer" I had was breast. And it made me chuckle a little. Which did make the NP give me a quizzical look. I expalined. And she chuckled a little too. And then she told me what she was recommending: aleve for pain as needed (easy) and transvaginal ultrasound. After confirming that it was necessary to have it done before vacation I scheduled it for my first day back. Nothing says back from vacation like working a whole day and then having medical tests. (Side note: this is a very frequent occurrence for me, I have scheduled an MD appointment or vaccine shot or MUGA scan or CT Scan after every. single. vacation. Since I finished treatment. I would change this pattern, but really the first week back from vacation your already have your cranky pants on why not get poked and prodded?
So back from vacation and time for transvaginal ultrasound. I go to check in. The woman at the desk doesn't know how to check me in for this test because I didn't come from another appointment. Not a good start. The eventually figure it out and I get my wrist band. Sitting in an ultrasound waiting room. Attempting to not have flashbacks to the last time I sat in an ultrasound waiting room. Trying not to think about how the tech called the Radiologist in to look at what she saw. I knew there was not concern that this was cancer, but my recent history still messes with my head.
Thankfully they are right on schedule and I only have to momentarily fight bad thoughts. The ultra sound tech is fantastic. She and I chat about where I work in the hospital and she gives me the heads up that the ultra sound jelly is cold. She checks my kidneys and likes so much what she sees that she spends extra time to get pictures perfect. She informs me that the machine is new and she is getting textbook pictures. I'll take it. After the external ultrasound comes the internal. So ya, they stick the probe right up in there. However, the new machine does take great pictures. I told her I thought I had an ovarian cyst on the right side. She was able to get great photos of it. 3D images. She thanked me for my patience. I thanked her for repeatedly confirming for me that the cyst was simple. smooth. no jagged lines. and the size of an apple. Well that explains some things.
The NP was able to confirm that it was simple. smooth. no jagged lines. and the size of an apple. The only follow up they recommended was another ultra sound the beginning of March to make sure that it dissolves on its own. So I am patiently waiting for my own #deflategate. This morning while out for my run I could 100% tell you exactly the shape and location of the cyst. Most of the time it doesn't give me pain. I'd like it to go away. You know, until the tamoxifen causes another one. And hopefully it doesn't burst like the last one.
Anyone else tired of this story? Well as a tried and true Patriots fan I sure am. Can I tell you what I would like to deflate? My apple sized ovarian cyst. Thank you tamoxifen. At least I know your working? The sports headline is slightly misleading. I'm going to be talking about pelvic exams and the gynecologist. Feel free to stop reading.
Cut back to December and multiple doctor appointments for vague lower abdominal pain. The pain was pretty non-specific and not sharp. Just dull and crampy. The "nice" thing about having cancer in your breast is that your physical exams of the area are less intrusive as you only need to take your shirt off. Granted someone else is trying to squeeze the life out of you and you have small moments of panic if they spend too long on one area. However, in order to evaluate for ovarian cysts involved a couple of pelvic exams (I mean who doesn't look forward to these) and a whole new barrel of fun known as a transvaginal ultrasound.. While having yet another new member of the gynecology staff physically palpate my ovaries internally I did find a moment to be grateful that the "women's cancer" I had was breast. And it made me chuckle a little. Which did make the NP give me a quizzical look. I expalined. And she chuckled a little too. And then she told me what she was recommending: aleve for pain as needed (easy) and transvaginal ultrasound. After confirming that it was necessary to have it done before vacation I scheduled it for my first day back. Nothing says back from vacation like working a whole day and then having medical tests. (Side note: this is a very frequent occurrence for me, I have scheduled an MD appointment or vaccine shot or MUGA scan or CT Scan after every. single. vacation. Since I finished treatment. I would change this pattern, but really the first week back from vacation your already have your cranky pants on why not get poked and prodded?
So back from vacation and time for transvaginal ultrasound. I go to check in. The woman at the desk doesn't know how to check me in for this test because I didn't come from another appointment. Not a good start. The eventually figure it out and I get my wrist band. Sitting in an ultrasound waiting room. Attempting to not have flashbacks to the last time I sat in an ultrasound waiting room. Trying not to think about how the tech called the Radiologist in to look at what she saw. I knew there was not concern that this was cancer, but my recent history still messes with my head.
Thankfully they are right on schedule and I only have to momentarily fight bad thoughts. The ultra sound tech is fantastic. She and I chat about where I work in the hospital and she gives me the heads up that the ultra sound jelly is cold. She checks my kidneys and likes so much what she sees that she spends extra time to get pictures perfect. She informs me that the machine is new and she is getting textbook pictures. I'll take it. After the external ultrasound comes the internal. So ya, they stick the probe right up in there. However, the new machine does take great pictures. I told her I thought I had an ovarian cyst on the right side. She was able to get great photos of it. 3D images. She thanked me for my patience. I thanked her for repeatedly confirming for me that the cyst was simple. smooth. no jagged lines. and the size of an apple. Well that explains some things.
The NP was able to confirm that it was simple. smooth. no jagged lines. and the size of an apple. The only follow up they recommended was another ultra sound the beginning of March to make sure that it dissolves on its own. So I am patiently waiting for my own #deflategate. This morning while out for my run I could 100% tell you exactly the shape and location of the cyst. Most of the time it doesn't give me pain. I'd like it to go away. You know, until the tamoxifen causes another one. And hopefully it doesn't burst like the last one.
Monday, January 12, 2015
An Active Participant
As documented through my many posts about my enrollment in the PRESENT I enjoy helping forward the science around breast cancer. I am so grateful for all who came before me and participated. The fact that my chemo was approved less than 20 years ago and tamoxifen is only 40 years old treatment, for breast cancer is still being developed by leaps and bounds. Participating in the vaccine study is super important to me to help shape future treatment. It's how I feel that I can give back.
Now I have found even more ways to give back, in the name of science. And sometimes all they want is my blood. I have been turned onto an amazing resource called the Army of Women. Here they have other blogs to read, resources and most importantly they have a list of Current Projects. This is a program of the Dr. Susan Love Research Program and they have open studies posted on the site. Well, guess what I found a new study to enroll in, its called Breast Cancer Risk in Young Women Study. The researchers are looking at genetic factors for women who had breast cancer at 40 years or younger. From the Army of Women site I was able to let the researchers know of my interest; I fit the bill and they sent me an email to confirm my interest. I confirmed my interest and a package arrived in the mail. It contained consent forms (for the release of my medical history, pathology reports, previous genetic tests, etc), a box with two blood tubes and a FedEx return envelope. All I had to do was sign the forms and get my blood drawn. Easy. Peasy. Lemon Squeezy.
This time I was able to recruit two other people to be involved in the genetic testing. Mom and Dad. So now I have family members sending their blood across the country in the name of science! I also completed at phone interview for my family history. When I get to my paternal grandmother and detail her and her sisters history of ovarian cancer I got the usual response "Oh dear". Zero breast cancer though. A very interesting genetic history. Maybe this one will turn up a marker, maybe it wont. However, I know that the more data that studies have the better chance they may find a commonality in young women with breast cancer and find why the incidence might be increasing. And all they wanted was two tubes of blood.
Also, looking at the studies the Nutrition Nerd in me totally wished I lived in Chicago and could enroll in the gut microbes and breast cancer study. Fascinating stuff.
Now I have found even more ways to give back, in the name of science. And sometimes all they want is my blood. I have been turned onto an amazing resource called the Army of Women. Here they have other blogs to read, resources and most importantly they have a list of Current Projects. This is a program of the Dr. Susan Love Research Program and they have open studies posted on the site. Well, guess what I found a new study to enroll in, its called Breast Cancer Risk in Young Women Study. The researchers are looking at genetic factors for women who had breast cancer at 40 years or younger. From the Army of Women site I was able to let the researchers know of my interest; I fit the bill and they sent me an email to confirm my interest. I confirmed my interest and a package arrived in the mail. It contained consent forms (for the release of my medical history, pathology reports, previous genetic tests, etc), a box with two blood tubes and a FedEx return envelope. All I had to do was sign the forms and get my blood drawn. Easy. Peasy. Lemon Squeezy.
This time I was able to recruit two other people to be involved in the genetic testing. Mom and Dad. So now I have family members sending their blood across the country in the name of science! I also completed at phone interview for my family history. When I get to my paternal grandmother and detail her and her sisters history of ovarian cancer I got the usual response "Oh dear". Zero breast cancer though. A very interesting genetic history. Maybe this one will turn up a marker, maybe it wont. However, I know that the more data that studies have the better chance they may find a commonality in young women with breast cancer and find why the incidence might be increasing. And all they wanted was two tubes of blood.
Also, looking at the studies the Nutrition Nerd in me totally wished I lived in Chicago and could enroll in the gut microbes and breast cancer study. Fascinating stuff.
Sunday, January 4, 2015
Booyah
ESPN anchor Stuart Scott died this morning. It was only this summer that I found out about his battles with cancer while watching the ESPY awards. Scott first diagnosed in 2007, then with recurrences in 2011 and 2013. I was amazed to see the rigorous workout regimen of mixed martial arts that he continued to follow through out all the chemotherapy treatments he had done. His spirit and thirst for life was always evident. During his ESPY acceptance speech for the Jimmy V Perseverance award he had some of the most profound insight into cancer treatment.
If you want to see the ESPN tribute to his life go here.
This quote is so perfect. Stuart Scott had accepted that death could be coming his way. Yet he fought and beat cancer every day by how he lived his life. When you watched him on Sportscenter you would never know his battles. He exuded energy and some of the greatest catch phrases ever. He inspired one of my favorite SNL skits of all time. His life and how he lived, why he lived and the manner in which he lived continue to inspire me to live mine. Booyah.
When you die, it does not mean that you lose to cancer. You beat cancer every day by how you live, why you live and the manner in which you live.
If you want to see the ESPN tribute to his life go here.
Wednesday, December 31, 2014
Happy 2015
Whoa. Another year down. How did that happen?
The Boston Globe alerted me to something I missed this year. New legislation in the state of Massachusetts that if you have dense breast tissue that you must be notified that a) you have dense breast tissue b)that it may increase your risk of breast cancer. The full text of the Act Relative to Breast Cancer and Early Detection can be found here. How did I miss this in June? I think I was busy having too much fun. In fact I know I was.
This year was pretty great. I continued to have a clean bill of health. I did things I never would have done before cancer; running long distance, online dating and becoming that person who awkwardly overshares all aspects of her life in person and not just online. I also returned to the track to run like a boss!
And the biggest event for all of my family was the birth of my precious niece. It's really great to have this little ball of sunshine. My colleagues have been great and allow me to torture them with endless photos. My roommate allows me to put photos of her in the living room, kitchen, hallway....I'm a little obsessed. As previously posted she truly is the manifestation of love, joy, strength, and perseverance. And cuteness. Holy Cuteness Batman.
In 2015 I am looking forward to more visits with the niece. I will try to eat less sugar, but given that I ate two cookies while my oatmeal cooked this morning, it's going to take a lot to reform my cookie monster ways. There just so good! I am looking forward to all the new survivorversaries and all the other celebrations the year with bring.
See you in 2015!
The Boston Globe alerted me to something I missed this year. New legislation in the state of Massachusetts that if you have dense breast tissue that you must be notified that a) you have dense breast tissue b)that it may increase your risk of breast cancer. The full text of the Act Relative to Breast Cancer and Early Detection can be found here. How did I miss this in June? I think I was busy having too much fun. In fact I know I was.
This year was pretty great. I continued to have a clean bill of health. I did things I never would have done before cancer; running long distance, online dating and becoming that person who awkwardly overshares all aspects of her life in person and not just online. I also returned to the track to run like a boss!
And the biggest event for all of my family was the birth of my precious niece. It's really great to have this little ball of sunshine. My colleagues have been great and allow me to torture them with endless photos. My roommate allows me to put photos of her in the living room, kitchen, hallway....I'm a little obsessed. As previously posted she truly is the manifestation of love, joy, strength, and perseverance. And cuteness. Holy Cuteness Batman.
In 2015 I am looking forward to more visits with the niece. I will try to eat less sugar, but given that I ate two cookies while my oatmeal cooked this morning, it's going to take a lot to reform my cookie monster ways. There just so good! I am looking forward to all the new survivorversaries and all the other celebrations the year with bring.
See you in 2015!
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