Showing posts with label BREAST CANCER SURVIVORS. Show all posts
Showing posts with label BREAST CANCER SURVIVORS. Show all posts

Thursday, December 10, 2015

NEW GUIDELINES FOR BREAST CANCER SURVIVORSHIP CARE

NEW GUIDELINES FOR BREAST CANCER SURVIVORSHIP CARE

The American Cancer Society/American Society of Clinical Oncology  have just published new breast cancer survivorship care plan guidelines.  The purpose of this guide is to provide recommendations to enhance the quality of clinical follow-up care for those who have completed initial treatment for breast cancer. After treatment for breast cancer, follow-up care is important to help maintain good health, manage any side effects from treatment, watch for signs that the cancer has come back after treatment, and screen for other types of cancer. While many evidence-based clinical guidelines exist for diagnosis and treatment, there are few evidence-based clinical care guidelines addressing life-long follow-up care for survivors by cancer type. Most patients remain at risk indefinitely for local and/or systemic recurrence of their breast cancer and for complications of their previous cancer treatment.
Below are summary charts of recommendations. Click on image to enlarge. You can read the full guide here.
1.  Surveillance for Breast Cancer Recurrence
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2. Screening For Second Primary Cancers
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3. Physical and Psycho-Social Long-Term and Late Effects of Treatment
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4. Health Promotion
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5. Care Coordination and Practice Implications
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These guidelines seem pretty comprehensive to me. I can see so many areas that were never addressed in my case after treatment ended – well actually, none of these issues were addressed! How about you? What do you think of these guidelines? Is there anything missing that should have been included? I’d love to hear your thoughts.

Saturday, August 9, 2014

Surviving the New (Not So) Normal



Kara Gorski, Ph.D. Headshot

Posted: Updated: 
Print Article
WOMAN AT DOCTOR


I've been doing a lot of "surviving" over the past four years. And while surviving a cancer diagnosis and treatment is unquestionably the most difficult thing I have ever done, surviving life beyond it isn't always a picnic in the park either. Don't get me wrong -- I'm extremely blessed and thankful each and every day I get to wake up! But it is exactly that tension between the gratitude that humbles me daily and the everyday stresses of life that leaves me feeling this "new normal" everyone keeps talking about is really, well, not-so normal.
So as I'm stumbling upon another birthday that also marks the anniversary of discovering my own breast cancer, I've decided to embark on a journey over the next year to explore exactly what it is about this new normal that isn't so normal -- one detail at a time. Let's kick off this adventure with those beautiful creatures who center my world - yep, my kids.
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When I was diagnosed, I had 18-month-old and 3-year-old boys. Having been a little girl who lost her own mother to this disease, I know that from a child's perspective a parent diagnosed with a life threatening illness can be very confusing, to say the least. But somehow, in our home, this confusion has manifested into quirky new realities that are just "normal" -- at least to my kids.
For instance, my littlest guy has a love-hate relationship with... my oncologist. I get a massive eye roll from him (yeah, I don't know where he got that) when I inform him that the morning's activities include a visit to my oncologist. He wants to like it there -- the nurses adore him and go to the ends of the earth hunting down Lightening McQueen stickers and tattoos for him -- but the child cannot make it through mommy's blood work (honestly, mommy barely can so I can't blame him much). He negotiates the best rewards if he sits quietly in the waiting room while I wander off to have an affair with those pesky needles. Good for him -- someone should be getting something out of those appointments besides poking, prodding and scanning.
Then there's the seemingly random and embarrassing announcement by my oldest to a group of other moms (who we just met) that I cannot have more children. I mean -- right out of left field. Just a "Right mommy? You know why (wink wink)." Huh? To him, it is a normal point of conversation. He really wanted another kid, despite the fact that he often laments the birth of his younger brother. So we have explained to him why there are just four of us. We simply tell him that because of the medicine mommy took, she can't have more children -- not entirely the truth, there's more to that story, but good enough to help him understand the realities around him.
Honestly, things like these don't really give me much pause, they are in fact our "new normal." Rather, it is the act of mothering these boys each day played out against the backdrop of the very real possibility that I could not be here to mother them at all that sometimes stirs a sense of guilt deep within me and leaves me feeling this new reality is not so normal after all.
My gratitude each day begins and ends with these little guys, but some days the in-betweens leave me completely perplexed and often holding a large glass of red wine. Case in point -- my newly renovated family room. Picture it -- freshly painted walls, gorgeous new leather couches, custom-made coffee tables and to top it all off the most indulgent shag rug, which makes you want to just lay down and be swallowed up in it. Our boys know there are lots of rules associated with redecorating in our home and they happily enforce them upon all visitors. No shoes, no food, no crafts and no jumping couch to couch. So, when I wandered into the family room one morning after having gone out with my husband the evening before, imagine my surprise upon finding streaks of gold sharpie pretty much everywhere. (I know, I gasped too.) It's like their mission in life is to destroy the simple sources of my happiness, including my new family room. And there it is -- the source of my new "not-so" normal life.
Yes, I know every mother experiences these emotions. The ones where you want to throw in the towel. The ones where the day can't end fast enough so you can get those little monsters into bed. The ones where you just want someone else to fix dinner, to clean up the house, to take the kids to sports and play dates. Yep, we've all been there. In fact, some of us have taken up residence from time to time -- admit it.
For me, it is exactly these emotions of wishing for a small nanosecond that this wasn't my life, that these weren't my kids, that I was somewhere else on an island by myself drinking a mojito and reading a book that lead to my guilt, because I experience them in the face of a constant reminder within my heart that in fact I could not be here tomorrow. I could miss it all -- all of the big moments and all of the little ones too. This reality that makes me so grateful to wake up each morning is on some days in complete and utter conflict with actually waking up to those small, crazy humans who are climbing all over me and won't let me sleep in. But, then again, I would not trade those crazies for anything else in the world. They are my world. And, just like their father, I have been in love with them from day one.
So it boils down to this. While there are a lot of things about life with my kids that make our reality as a family different than it would have been BC (that's, "before cancer" in our house), those things in the end are just our normal. Instead, it is the internal conflict that arises within me on days when I'm frustrated and exhausted from being mommy all the while feeling deeply in my heart how extremely grateful I am for another day of simply playing this role, that makes my journey after breast cancer a little not-so normal.
That's a piece of my survival story. Stay tuned for more and be sure to let me know -- what's yours?

Monday, June 23, 2014

Breast cancer's difficulties leads woman to open shop for other patients

http://www.freep.com/article/20140622/FEATURES08/306220014/1025

We are honored to be a part of the Detroit Free Press Cancer Survivors project. Susan
Susan Thomas opened Susan's Special Needs, a Pleasant Ridge boutique born from her own experiences in 2000. The store carries wigs, prosthetic breasts, bras, hats, headscarves, seat belt pads, everything a woman undergoing breast cancer treatment might need — including emotional support.








Wig helps breast cancer survivor grow confidence: Susan Thomas talks about her experience with wigs. Georgea Kovanis/Detroit Free Press

Susan Thomas opened Susan's Special Needs, a Pleasant Ridge boutique born from her own experiences in 2000. The store carries wigs, prosthetic breasts, bras, hats, headscarves, seat belt pads, everything a woman undergoing breast cancer treatment might need — including emotional support. / Kathleen Galligan/Detroit Free Press

Susan’s Special Needs

24052 Woodward, Pleasant Ridge
www.susansspecialneeds.com or 248-544-4287

Warning signs of breast cancer

■ New lump in the breast or underarm.
■ Thickening or swelling of part of the breast.
■ Irritation or dimpling of breast skin.
■ Redness or flaky skin in the nipple area or the breast.
■ Pulling in of the nipple or pain in the nipple area.
■ Nipple discharge other than breast milk, including blood.
■ Any change in the size or the shape of the breast.
■ Pain in any area of the breast.
Source: Centers for Disease Control and Prevention, www.cdc.gov

Factors that decrease the risk of breast cancer

■ Being older when you first had your menstrual period.
■ Starting menopause at an earlier age.
■ Giving birth to more children, being younger at the birth of your first child, and breastfeeding your children.
■ Getting regular exercise.
■ Maintaining a healthy weight.
Source: Centers for Disease Control and Prevention, www.cdc.gov

Factors that increase the risk of breast cancer

■ Long-term use of hormone replacement therapy.
■ Personal history of breast cancer or noncancerous breast diseases.
■ Family history of breast cancer.
■ Treatment with radiation therapy to the breast/chest.
■ Exposure to diethylstilbestrol (DES).
■ Dense breasts.
■ Drinking alcohol.
■ Night-shift work (which throws off circadian rhythms).
Source: Centers for Disease Control and Prevention, www.cdc.gov.
Susan Thomas wasn’t sure what was worse — that her wig looked like dog fur or that it kept sliding off her head.
But this she did know: The wig, the best she could find in 1992 when she lost her hair from the chemotherapy that was part of her treatment for breast cancer, made her look like a cancer patient.
■ Related Special Section: Surviving Cancer
And people treated her differently once they knew she was sick. Instead of seeing Susan walking toward them, they saw cancer coming their way. “I had a neighbor who had a new baby,” said Thomas, who was 39 when she was diagnosed. “She wouldn’t let me hold the baby because she thought I was contagious.”
That sort of reaction, that sort of thinking can be devastating to a cancer patient.
“It makes us feel like we’re not worthy,” said Thomas, a former oncology nurse. Believing you look bad — or unlike yourself — can make you feel like you’re losing everything. That instead of getting the best of cancer, cancer is getting the best of you. That instead of beating cancer to its core, cancer is beating you — and taking away your identity with it.”
So she decided to try to change that.

A new path

At 63, Thomas, who lives in Birmingham, is cancer-free. She and her husband, 68-year-old David Thomas, own Susan’s Special Needs, a Pleasant Ridge boutique born from Susan Thomas’ experiences.
The store carries wigs, prosthetic breasts, bras, hats, headscarves, seat belt pads, everything a woman undergoing breast cancer treatment might need — including emotional support.
“As soon as I walked in the shop, I knew I was in the place for me,” said Natasha Robinette, a 42-year-old radiologist who lives on Grosse Ile and showed up at Susan’s when she first needed wigs to cover bald spots on her scalp, the result of cancer surgery.
Upon receiving her first great wig, Robinette rolled down the car windows on the drivehome so her hair could blow in the breeze. “That, to me, was the feeling of feeling like a woman again,” Robinette said.
“With Susan’s efforts, work and support, I feel complete, whole and beautiful again,” Robinette said.
The store is set up more like a salon — with individual consultation rooms and beauty parlor chairs — than a place that sells medical supplies.
It doesn’t smell like sick. It doesn’t smell like despair.
Wigs in the store range from $250-$3,000. The wig fitters at Susan’s Special Needs are meticulous; they and Thomas won’t let a woman out of the door unless they think she looks fantastic — no matter how many times a wig or prosthesis needs to be adjusted.
Thomas tells the women what they can expect from treatments, what soaps might irritate their skin, what camisoles can disguise postsurgical drainage tubes. She is at once fashion consultant, cheerleader, nurse and educator.
Thomas has been known to ask clients who are nervous about what is ahead of them: “Will it help you if I show you my scar?”
And when they say yes, she unbuttons her blouse and shows them.
“I share with them who I am and what we can do to make their journey easier. We can guide them through the process of talking about hair loss and what we can do to make that journey easier,” she said.
Carol Schroeder, who had a double mastectomy in September found Susan’s Special Needs after trying other stores that sell prostheses. “The thing is, people have to remember, I’ve never done it before. Otherwise, sometimes you talk to people who’ve been in the business for a long time they don’t take time to tell you or be patient enough with you.”
But Thomas, said Schroeder, who is 66 and lives in Sterling Heights, “was very reassuring. She talks about making sure you get the right fit for what you need. ... I would I describe her as a patient, gentle perfectionist. She just answers all your questions.”

A shocking biopsy

Susan Thomas was in the shower, doing her routine self-exam when she felt a lump in her left breast.
As a nurse who worked with cancer patients, she knew she needed to see a doctor.
As a woman, a wife, a mother of two young girls facing the potentialof a life-altering diagnosis, Thomas chose to believe the doctor when he said the lump was probably just a cyst and she should simply monitor it.
Within six months, the lump had gotten larger. In May 1992, a biopsy came back: cancer.
“We were all shocked,” said Thomas, who was 39 at the time. “I do not have a family history of breast cancer. I was young. I didn’t know anybody else who was diagnosed with breast cancer.”
Thomas had surgery, followed by chemotherapy.
When her hair began falling out in clumps, she and her husband checked into the Townsend Hotel in Birmingham, ran a bath, got in the tub and pulled out the rest of her hair. They went to dinner.
“He poured me a glass of champagne and said ‘Here’s to the future.’ He took me down to the Rugby Grill and I put on my wig for the first time. It looked awful. It wasn’t fitted to my head. It moved. I was sitting here, I got a new outfit. I sat there and thought, ‘Oh my God, this is awful! I can’t walk around looking like this!’ ”
The more she thought about the situation, about what was available for women undergoing breast cancer treatment, the more disgusted she became.
“This is ridiculous,” David Thomas said, finally. “We’re changing this!” They started a wholesale business in 1993, transitioned into retail in 2000.
Along the way, Susan Thomas has made many friends and lost many of those friends to cancer.
“The emotional purge and support I receive at Susan’s explains the smile on my face as I’m leaving,” said Robinette, who visited the shop last weekend for a wig fitting. “These things have no price tag. They are not on Susan’s website or product inventory list.”
Said Thomas: “I love what I do. It’s just not a business. It’s more my ministry. This is more to me than selling a wig. This is hoping to change the journey.

Thursday, June 5, 2014

SIGN UP FOR THIS UNIQUE ONLINE EVENT FOR BREAST CANCER SURVIVORS

Gai Comans
Gai Comans
A few days ago I posted information about an upcoming online event for breast cancer survivors. Today I want to provide you with some more information courtesy of Gai Comans, the fabulous organizer of this unique event.  So in her own words, here is why she set up this event and what she hopes you can get from it. 
Everyday, I get emails and messages from women asking me how to “get comfortable with this new kind of normal”. I know that not everyone likes that phrase, but we understand it, as it’s about the change that comes with a cancer diagnosis.   It prompted me to want to understand more about how I can help you, so thank you so much for taking the time to send me your thoughts and what you needed help with.
As I said it isn’t always obvious and sounds something like this…
“I’m just trying to figure out where I belong. I feel like I am in the middle of nothing. I am not what I      was before and I don’t know who I am now”.
“I’m not sure what I should be eating and not eating, there is so much conflicting information and everything seems to cause cancer these days. Where do I start?”
“Living with the fear daily, even though it might not be in the forefront of my mind, but it’s always there…”
“Not thinking about it too much or completely over-thinking it and getting myself all stressed out about the treatment failing”.
 “I have just lost my self confidence!“
“I hear so much about meditation, but I just don’t know where to start”.
“My friends and family seem to think I’ve won the war, but I’m afraid that I’ve just won one battle with more to come”.
“How do you stay upbeat? I am taking one day at a time, but some days I just want to curl into a ball and cry”.
“Going from a two-income household to one has been incredibly difficult”.
No matter what you call it, it’s real and can be challenging, and it touches all areas of our life:
  • Our connection to ourselves – through well-being, anxiety levels, sense of confidence.
  • Our connection to others – relationships, resilience.
  • Our connection to the rest of our life – career, sense of adventure, financial enjoyment.
In order to answer your questions, I have gathered a posse of 15 experts to help you.   Over eight days, these experts will guide you through how to live from a place of empowerment, rather than fear.  How to get more energy for the things you love, how to sleep better, improve your resilience and relationships.  They come together to guide you with the simple and easy “how to’s” .
This event is starting on June 7th and will require you to opt-in, so that I can send you all the information about the event. And it is shaping up to be an amazing event and will answer the questions that you are asking and want help with!
Gai