Join us at 1 p.m. Tuesday, when we’ll chat with Una Hopkins, a nurse practitioner with training in cancer genetics at White Plains Hospital’s Dickstein Cancer Treatment Center.
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Read blog posts, see Tweets and follow links in this recap of our Twitter chat with Rica Mendes, a Livestrong Leader, LoHud.com blogger and a breast cancer survivor, about the challenges of coping with cancer after the treatment is over.
Rica Mendes, who blogged about her breast cancer diagnosis and treatment here on this blog on LoHud.com last year, says she feels more like a “recoverer” than a “survivor.”
A quote from her Rica’s Livestrong Advetures blog:
Once the scalpels invaded my skin, once parts of me were carved up and discarded, replaced by synthetic prosthesis, I became something… someone… else. I think the question still looms, who or what have I become?
We’ll chat Mendes, a Livestrong Leader, at noon Oct. 4 about the challenges of coping with cancer after the treatment is over. Join us by following @lohud and using the hashtag #lohudbc. Rica’s Twitter handle is @rica620.
Here’s the blog post in its entirety:
Sometimes, it’s weird how time flies.
Sunday, 1 year ago, I had my double mastectomy. 1 year and 2 days ago, I still had my breasts, nipples, normal sensation, etc. Now? I have foreign parts installed, tissue that’s technically my own flesh and blood, but feel nothing, let alone hardly feel a part of me, and a strange numbing feeling in my chest.
I think Sunday, far more than my cancerversary, signaled that it’s been a year since I felt “normal.” Even knowing I had cancer in my body, I still felt whole. I still felt like myself. Once the scalpels invaded my skin, once parts of me were carved up and discarded, replaced by synthetic prosthesis, I became something… someone… else. I think the question still looms, who or what have I become?
The obvious response, given the context of this blog is, “SURVIVOR.” But I’m not so sure about that. “Recoverer,” yes. I recovered from surgery. I recovered from the infections.
But I didn’t survive – at least, I’m not sure that I have. My breasts didn’t survive. My hair didn’t survive. My feelings and senses didn’t survive. Most of the skin in my chest area survived.
My strength didn’t survive. My cycling and athletics haven’t survived… not yet. My ability to find ways to bounce back better than before hasn’t surfaced, yet. I’m struggling to do it.
And I can’t find a way to embrace the new boobs, yet. Perhaps if my nerve endings were still functional, I could. Or if everytime I flex a muscle, they didn’t ripple and bounce around like a freakish body builder, I might be able to start. They still don’t look like breasts. One is larger than the other, one is fuller than the other, the horizontal scars are still visible, and have left some strange sculpting. They nipples still look like Frankenboob. Forget the cancer: If I had breasts like this before, I’d be seeking reconstruction.
By no means am I saying that Dr. Nordberg did a bad job – not at all! He did a great job, given what the task at hand was. The left side that is fuller and bigger is that way because of the scar tissue, etc – it was problematic from the beginning. The right side just settled the way that it did. And he’s trying to fix things, but this is going to be a long time until it’s close to where I envision being able to begin to accept them as being a part of me.
And my hair, oh, my hair. Yes, I’m not bald. But bald was a “cooler” look than what I have going on now. I look like a retarded Little Orphan Annie. Yes, it’s great that I have the curls that I paid (well, my parents paid) for when I was in high school and didn’t quite get. But they don’t go anywhere. They curl in on themselves and don’t grow down. It’s like having a head of ingrown curly hairs. I touch my head and I feel a sheep, not my hair.
So, neither my breasts nor my hair feel like “me.”
I don’t know.
One year later, and I still feel so far away from really recovering, let alone surviving.
For my personal journey, the cancer was the easy part – it was caught before it caused any pain. Yes, I survived the cancer, I suppose. But what I’m really struggling to survive is the surgery, the treatment, the chemo, the after-effects, the recovery, the butchery.
Reporter Linda Lombroso wrote this story on our blogger, Rica Mendes, for the Sunday Life section on Nov. 20, 2011:
Every Sunday, we write about residents we call “rock stars,” but few of them are actually musicians — they are just local people who are in the spotlight, or who are deserving of some positive attention.
Rica Mendes just might be our first overnight sensation.
We met her, in late September, getting fitted for a wig at the American Cancer Society’s headquarters in White Plains. At 37, the divorced mother of two from South Salem had recently undergone a double mastectomy and was preparing for the eventual day when chemotherapy would claim her long hair.
Journal News photographer Xavier Mascareñas — who was at the cancer society on an assignment to shoot low-cost resources for breast-cancer patients — struck up a conversation with Mendes, who was there to select a free wig. Mascareñas asked if he could take her photograph. She agreed, and gave him her telephone number, too. We called her to follow up, and discovered she was a blogger and leader for LiveStrong, the cancer-advocacy foundation created by athlete Lance Armstrong.
We were looking for someone to blog for us during October, as part of our coverage of Breast Cancer Awareness Month, and asked Mendes, who jumped at the opportunity.
The blog, which launched just days later, quickly became a hit with readers. In her chatty, no-holds-barred style, Mendes reported on her personal struggle, chronicling everything from her grueling chemotherapy treatments to the shock of losing clumps of her hair — which she captured, on camera, during one of her many video-diary posts.
“I’ve always been a heart-on-the-sleeve kind of person,” she says.
As tough as it must have been for Mendes, her frankness made us admire her even more — and her courage was inspiring to our readers, many of whom wrote to tell us so. After Mendes was bald, in mid-October, she continued to post video blogs staring straight into the camera.
In this information age, she says, people deserve to see and hear the truth.
“I’m bald, there’s no hiding that. And I’ve got cancer, it’s hard to hide that,” she says. “It takes a lot more strength and restraint not to talk about it.”
Peter D. Kramer wrote this profile of South Nyack survivor Maria Souto for the Sunday Life section on Oct. 23, 2011:
Maria Souto knew better.
The daughter of nurses, Souto knew what to look for — and feel for — when it came to breast self-exams. “I had medical training, so I did my own exams and I felt something, but I ignored it for a month or two,” says Souto.
That was 13 years ago and she was living in Germantown, Md. She is now coordinator of communicable disease for Rockland County’s Department of Health and lives in South Nyack.
Maria Souto, who survived breast cancer, at her South Nyack home. (Xavier Mascareñas/The Journal News)
“I thought it might be a cyst or related to my period,” Souto says. “I had ignored it, thinking ‘It’s going to go away.’ But then I realized it wasn’t going away and I woke up one day and I had a black-and-blue mark. People usually say you have no symptoms, but I guess it was an opening for me to go see the doctor.”
Souto’s surgeon should have known better.
When a mammogram showed something, a biopsy was ordered, but it came back negative. “I think the first surgeon I used just didn’t go in properly,” Souto says. “He went in a different way and never reached the cancerous cells.”
It was February 1998.
Cleared by the biopsy, she went on with her life, working at Georgetown University Hospital.
Months later, bruising again, Souto had another mammogram, another biopsy, a different surgeon. “One of the doctors I worked with was my primary care, so my stuff would come through there and the girls would let me look and make sure everything was fine,” she says. “One day, one of the nurses said ‘Maria, your pathology report is back.’ And I said, ‘Oh, OK.’ And I looked at it and I cursed out loud. And the nurse said, ‘What?’ And I said ‘I have breast cancer.'”
It was May 1998. Souto had just turned 40. She had stage 2 breast cancer, with one lymph node — the one closest to the breast — positive for cancer.
She had a lumpectomy, chemotherapy and radiation.
Now, Souto has a peace about her, as if being in her presence might possibly lower your blood pressure. She speaks softly, deliberately. Here are 10 things Maria Souto took away from her fight with breast cancer.
Journal News editor Karen Croke reported on the best ways to help loved ones when they’re diagnosed with breast cancer, as part of our ongoing coverage for Breast Cancer Awareness Month. Here’s the story as it appeared in print on Oct. 23:
“What can I do for you?”
Sounds exactly like what a cancer patient would want to hear, doesn’t it? Turns out, these are the last words those battling breast cancer want to hear come out of the mouths of well-intentioned friends and family.
“This sounds terrible, but it was a little annoying when someone would say, ‘what can I do for you?,’ ” says Stacey Sypko of Patterson. The 45-year-old mom of two boys, now 5 and 7, was diagnosed in May 2009.
(Photo illustration by Xavier Mascareñas / The Journal News )
What would have helped, she says, is friends taking a can-do attitude rather than hanging back and waiting for guidance.
“If you want to do something, cook something and drop it off — great. But don’t make me tell you how to help me. It’s hard to ask for help actually.”
It can be as equally difficult for those supporting a loved one with breast cancer, and that’s a large group. According to the American Cancer Society, three out of every four American families will have at least one family member diagnosed with cancer. And most of us are confused about what to say, what to do, and how to help.
Those battling breast cancer have the best advice: Offer to cook meals, walk the dog, help with child care or give rides to treatment, they say. Be specific; saying “let me know if you need anything” won’t do much good if a person is shy about asking for help.
At noon, Karen Croke led a discussion on the do’s and don’t’s of what to say and do when a friend or loved one is newly diagnosed. Here’s a replay of the conversation.
Heather Salerno wrote this profile of Lauren Novotny of Dobbs Ferry for the Sunday Life section on Oct. 16, 2011:
When Lauren Novotny of Dobbs Ferry felt a lump in her right breast in January 2010, she didn’t go to a doctor right away. Only 30 at the time, she waited for several months before looking into it.
“Maybe I didn’t want to face it, or didn’t really think it was anything major,” she says. “And then my friend, Kelly, was diagnosed. That hit home and hit hard.”
Novotny has known her best friend, Kelly Thomas, since they worked at the Chart House in Dobbs Ferry together when she was 18. So when Thomas revealed that she had an aggressive form of breast cancer, Novotny got scared for her friend — and for herself.
Lauren Novotny of Dobbs Ferry was diagnosed with stage 2 breast cancer in 2010 at age 31. She took up meditation to help herself heal. ( Joe Larese / The Journal News )
As it turned out, Novotny’s lump was breast cancer, too, which had spread to her lymph nodes. That launched a whirlwind of treatment that included a double mastectomy and five months of chemotherapy. For her, the side effects of chemo were so bad — dehydration, heart palpitations, rashes and swollen limbs — that she ended up in the hospital twice.
Yet throughout her journey, Novotny has had Thomas to lean on, and vice versa. Each knew exactly what the other was going through: The two even sometimes got chemotherapy on the same day, and then they’d head to Thomas’ apartment in Nyack for what they called “chemo day care.” They’d try on each other’s wigs, watch reality shows and struggle through bouts of nausea and pain together.
“It was really a good experience for something that’s such a horrible experience, to have somebody by your side like that,” she says. “But in turn, I’m very upset that we both had to go through something like this.”
Up next for Novotny is some more reconstructive surgery, and she’s also been debating with her doctor about whether she needs to keep taking a cancer-fighting drug, tamoxifen. But most important, all of her follow-up tests have shown no sign that the cancer has returned. (Thomas is also doing well.) Yet she does wonder if she would have needed surgery or chemotherapy, if the disease had been caught earlier.
“I don’t regret anything, everything happens for a reason,” she says. “But I do suggest, and I’ve told every single one of my girlfriends, if you feel anything…go to the doctor.”
There are plenty of other ways that breast cancer has made an impact on Lauren Novotny. After the jump, 10 more examples of how the disease has changed her life:
Pete Kramer wrote this profile of Nyack’s Kelly Thomas for the Sunday Life section on Oct. 16, 2011:
Kelly Thomas certainly didn’t expect breast cancer at 31.
“It doesn’t run in my family,” says the 33-year-old Nyack resident. “Some women expect to get it. Their grandmother had it, their mother had it, their aunt had it. I had no knowledge of it. I knew about every other cancer because my father had colon cancer, then the liver, then the lungs. I knew all the other cancers except for breast cancer.”
Still, she knew something dark was in the air in January 2010: It was in the cards.
(Photo by Tania Savayan/The Journal News)
Thomas, who grew up in Ardsley, does her own tarot-card readings, and she kept seeing a card of foreboding.
“The tower card is like fast, upheavel, destruction, disaster. It could be divorce, it could be death when accompanied with other cards. It’s just always a dark, scary card, and I kept getting it over and over.”
She thought her new relationship was in peril.
It turned out it was her life that was in the balance and that her new boyfriend at the time — who had beaten Hodgkin’s lymphoma years before — would be a godsend, the person who first found the lump in Thomas’ breast and who helped her through her treatment and much of her recovery.
She had both breasts and a lymph node removed and underwent chemotherapy, radiation and reconstructive surgery. The cancer has not recurred in Thomas’ regular follow-up exams.
If Thomas had the tower card and cancer, she also had key people — and a positive perspective — that made it bearable. After the jump, 10 more things about Kelly Thomas’ cancer story that fit that description:
Journal News reporter Heather Salerno reported on the many other obstacles that face women under 40 when they’re diagnosed with breast cancer, as part of our ongoing coverage for Breast Cancer Awareness Month. Here’s the story as it appeared in print:
In June 2007, just a month after being diagnosed with stage 2 breast cancer, Cortlandt Manor’s Sue Andersen was sitting poolside in Las Vegas at her best friend’s bachelorette party.
Only 37 and the mother of two small children, Andersen had lost all of her hair during her first two rounds of chemotherapy. But she felt well enough to make the trip, and the celebration allowed her to briefly take her mind off her illness.
So on one 100-degree day, Andersen ditched her wig back in the hotel room and wrapped a bandanna around her bald head. To show their support, her group of pals donned scarves, too, a move that attracted some attention around the pool.
Breast cancer survivors, from left, Lauren Novotny of Dobbs Ferry, Kelly Thomas of Nyack, Sue Andersen of Cortlandt Manor and Pam Tole of Yorktown. All were diagnosed with the illness in their 30s. ( Xavier Mascareñas / The Journal News)
“The guys at the bar said, ‘What’s up with the bandanna?’ And my friends said, ‘Sue has breast cancer,’” recalls Andersen. “They said, ‘Come on, what’s the real story?’ They didn’t believe us because I was too young.”
Unfortunately, that perception — young women don’t get breast cancer — is all too common. The disease is still relatively rare among those in their teens, 20s or 30s: Most cases are in women over 50, with a median age of 61. But the numbers are significant.
About 5 percent to 6 percent of all breast cancer cases occur in women under 40 in the United States. And there are more than 250,000 breast cancer survivors in this country who were diagnosed at age 40 and under, according to the Young Survival Coalition and the Susan G. Komen for the Cure Advocacy Alliance. Even more alarming — when compared to those in their 50s and beyond, young women typically have a more aggressive form of the disease and a lower survival rate.
And while getting breast cancer is devastating at any age, younger women face a number of unique obstacles that compound an already heartbreaking diagnosis.
Those who are single wonder how to bring the “C-word” up on a date, or how they’ll pay their bills if they take time off work to recover. Young mothers are dealing with cancer while caring for their little ones — and praying that their children won’t have to grow up without them. And all face a possible loss of fertility, prompting fears that they may never have biological children, or be able to add to their family.
Not to mention, right from the start, they’re fighting a stereotype — one that can actually kill them. Because having breast cancer is so inconceivable to them, young women are less likely to seek medical attention right away. And if they do, doctors sometimes tell them to wait and watch a lump. Both approaches can lead to a later diagnosis, and for some, an earlier death.
“If you find something which is abnormal or something in the breast that you did not feel before, make sure you show it to a physician and don’t let him dismiss it,” says Dr. Abraham Mittelman, a medical oncologist with Northern Westchester Hospital and Phelps Memorial Hospital Center. “Pursue it,” he says, “until you have an answer.”
We wanted to get some more information out there about this particular group of breast cancer survivors, who face some very different concerns from their older counterparts. Here are four of the biggest challenges that young women encounter as they battle this life-changing disease.