Cancer Insights to Ponder
“It has not been an easy road. I won't lie. It has been extraordinarily challenging both emotionally and physically.
I think the thing that has gotten me through is keeping myself busy with every waking moment and focusing on other people rather than myself — focusing on my children and my husband and my family rather than thinking about my own impending mortality.
So far, so good. I certainly didn't think that I would live this long.
I just wanted to get as much infrastructure put in place as possible so that somebody else could carry the torch after I've left this world.
It was the greatest surprise of my life to wake up every single morning. Every morning I wake up I'm so surprised and so grateful for the opportunity to continue this work for angiosarcoma, but it is gone so far beyond that. I want to do this for every cancer patient that has cancer right now, or that is destined to have it. I want this to be something that goes from a death sentence to a chronic disease to a cure, and I want that to happen as fast as possible. I think for me that has been the way I've made it through, just focusing on that.
What is the next step, what is it that I do tonight, what do I do after the kids go to sleep, what do I do in the morning, how do I arrange my days that I can get the most out of it --that's been my method.”
- Dr. Corrie Painter – Angiosarcoma Thriver and Cancer Researcher at the Broad Institute
“I think it's important to know that this is a very difficult time in a lot of men's lives. And it's important to ask questions, and it's important to seek out support. A lot of guys don't do that we're really not built or trained to do such a thing. But this is the one time if no other time in your life that you should ask the help of your friends, help of your families the help of your physicians, they have resources as well that they can provide for you because it's a stressful time. It's good, stay engaged and stay educated, and that'll help take the edge off of the difficult journey.”
- Anson Tharayanil, MLS Genomic Health
“Main message I want to make is that breast cancer doesn't discriminate, whatever color you are, whatever race you are, whatever nationality you are, breast cancer doesn't discriminate. I meet people from all walks of life who are battling this disease. Early-stage breast cancer isn't what's going to kill you it's when it metastasizes that's when you're in the fight of your life, and people need to understand that it's not all pink ribbons and good times.
There are a lot of men and women out there who are battling every day of their life, whether it's medications and doctor’s appointments.
Metastatic breast cancer is a killer ……. if you have to go to the doctor, if you could bring somebody with you as support just to take notes to listen so much is going to go over your head. It's important to have that second person there and support whether it's your spouse or your significant other, if you have a strong support system at home it makes battling this disease and living so much I don't want to use the word easy but so much better and use some many support groups that are out there.
Don't go at this alone. There's so much information out there on the internet, use it. If you need help, go online, reach out to someone. There's so much available.
I suggest you to go to the MaleBreastCancerCoalition.org homepage or just Google male breast cancer there's so much out there.”
Michael Singer, Male Breast Cancer Thriver
“The first thing I'd say is that this is a journey and no two journeys are the same. No two … cancers are the same. It can feel like a roller coaster in times, but finding the right care team of doctors, nurses, if it comes to an infusion nurse, support staff, family and friends is really the most important thing.
Sometimes, all those pieces don't come together immediately. And I think you know we're all aware of that reality, and I do not think being shy about making sure you seek out people you're comfortable with, especially in your medical team.
Beyond that, recognizing that the field is moving so quickly, it's just important to know that the discoveries are happening fast.
There is enormous value in participating in research. So, it's our project which should be fantastic or whatever another project that comes your way that you're interested in, or clinical trials that may come your way, because the opportunity for the benefit to one's self is vast. The opportunity to benefit those that come after you is also equally profound and important. And I think that's a gift that you can give while you're facing this journey with your network of support.”
- Dr. Eli VanAllen – Oncologist/Researcher at the Broad Institute
“First, you need to remember that a person who is living with cancer is still the same person they were before they were diagnosed; they have cancer. What is different is that they will need to feel your support, and they may need your assistance with many everyday requirements and tasks they will face in their daily life.
They will need, more than ever before, to feel support from their family, from their healthcare team, their friends and you as they wind their way down the twisted path of cancer land.
It’s a fact, people who are living with cancer and who experience high levels of support report that having this level of loving and caring allows them to better deal with whatever cancer throws at them and whatever twists and turns their journey takes.
It is crucial for a person living with cancer to know they are still loved, that people are concerned about them and that they will be able to rely on others when they need assistance or help.
The many Cancer Thrivers who are fortunate enough to have high levels of support, tell us that even in their bad days are made better and more comfortable by the support they receive from their families and their communities.”
- Joel T Nowak, Cancer Thriver and Founder of Cancer ABCs
“ I would say that it's imperative to get multiple opinions if you're diagnosed. I would say you may have the best doctor in the world, but the knowledge base of all the different doctors is different. By visiting three or four doctors, you have one chance to do this, so you need to go out there and do your homework and get multiple opinions, and you may find that doctor that has a tiny bit of knowledge in an area that treats you slightly differently that can help you.”
- Mark Hall, Metastatic Prostate Cancer Thriver
“I think that when I started in this field 30 years ago, the average life expectancy for a guy with castrate resistant prostate cancer was six months. I got into this field because that was an unacceptable number.
We now know that the diagnosis of castrate resistance is not an immediate death sentence, so many of those men live more than five years. As we learn how to use these agents in the M0 and low-volume M1 state, we're delaying the time to castrate resistance dramatically.
Men are living much, much longer than they used to, and we are now learning how to again, manage their disease in a more chronic state to help guys have a good quality of life. I think that it's a time of great hope. I think guys need to know that.
Diagnosed with metastatic cancer, it means your life has changed, and your life is different. But it doesn't mean that this cancer has to take over your life and end it quickly.”
- Dr. Ken Pienta, Oncologist /Researcher at The John’s Hopkins Hospital
