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Shirley Bubel: Cyber Mom To Patients

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AP
Shirley Bubel is four years past the day when she was first diagnosed with breast cancer. Now cancer free, she is trying to enjoy retirement with her husband Walter, but the disease is always on her mind.

"It can pop up at any time, the rest of your life you're never free from vigilance," she says.

Bubel's story is sadly familiar. A tumor was evident on her mammogram but for two years doctors told her it was nothing.

" We were both very unhappy with not doing anything about it. So we asked to see a surgeon and the surgeon said,"Oh, no, it's got rounded edges. It's not cancer. Just ignore it and we'll watch you," Bubel recalls.

"So I went in every six months and it didn't change. And then in two years, it did. Well, as it turned out, I had medullary carcinoma of the breast, which is an unusual sub type. Only five to six percent of the women have it and it is characterized by smooth edges," she adds.

The news sent them scurrying for information. Their bible became "Susan Love's Breast Book" and Bubel's husband, Walter, was the researcher.

"We read it independently and then got back and talked about it and re-read sections together," Walter says. "I think it's so important to have someone who is one step removed from the real problem, even though we're married for so long - since we were children."

Shirley is grateful for his help. "Well, without him I never would have had the get-up-and-go to go to UCLA," says Shirley Bubel, referring to the hospital where she had her surgery. "It just wouldn't have happened because he is the one that spearheaded, that made the phone calls and got that all set up."

Ultimately, Shirley had a lumpectomy and radiation. But her quest for information continued and the Internet became indispensable. In her mid 60s, she was older than most others online.

"I find very few women my age. The median age for diagnosis is 63, so obviously we have a massive amount of people that are my age and older who aren't on the Internet because they don't have a computer or don't know how to get on," Shirley says.

Now, Shirley is Internet mom to younger women who have breast cancer. One of them is The Early Show unit manager Marci Waldman

"I honestly could not have survived, because when I was freaking out at four o'clock in the morning, I would email and Shirley, who lives on the West Coast, would answer me," Waldman says.

Bubel understands the desperation. "Well, Marci didn't want to weep and wail with her parents, knowing they couldn't do anything other than phone calls and visits. So she's able to come on the Internet with a total stranger, which I was at the time. We can talk about anything," Bubel says.

On the Web, Bubel offers words of comfort that only a breast cancer survivor can give.

"But my best thing is just when I see somebody say, 'Help I'm scared to death, what do I do? How am I going to you know… What will happen to me?' And I can - having been four years beyond - can tell a little bit of what will happen to you," Bubel says.

Along with her husband, Bubel is back to the rhythm of daily live. And if there's a silver lining to all she's been through, it's that her family has grown to include the breast cancer Internet family she's adopted as her own.

"She is my virtual mom," says Waldman. "And it's an incredible relationship. She knows things about me that my closest friends don't know."

Bubel adds, "I don't know how to say it, but I feel like I've known her since she was little, you know. She calls me mom."

Dr. Jeanne Petrek, director of the surgical unit at the Sloan Kettering Cancer Center, says, "support groups have been shown to be so useful to people respecting and trusting their body again. And luckily, in breast cancer, we have so many survivors."

And yet, women like Bubel have a nagging fear in the back of their minds that it's going to come back. To cope with that, Dr. Petrek says, they have to learn to trust their bodies again, which takes time.

"It takes sometimes, also, speaking with others to whom that has occurred and being assured that it's a large percentage. Remember that of 8 million cancer survivors, men and women of all cancers, 2 million of them are breast cancer survivors," she says.

As for red flags to watch out for, Dr. Petrek says the main concern is when breast cancer spreads to another organ and in that case it depends upon the organ.

"If it were to the bone, which is the most common site in breast cancer, it would be pain in a particular bone. To the liver, it could be yellowness, jaundice because breast cancer spreads to the liver. So really, it could be any number of symptoms. All of which have to do with poor health or could be a sign of recurrence of another kind of cancer, too. So those are the kinds of things a doctor would check for," she explains.

Friday, the four women who are part of the Cancer Connection will meet each other in person for the very first time in The Early Show studio.