Taking it from the top

So my fear happened today. I have a very lovely woman named Carol that goes with me through my process. She is called my Nurse Navigator. (I drive a Navigator too;) lol. Anyhow…she is one who comes to my appts. with me and answers questions along the way. Probably so I don’t annoy the hell out of the staff;)

Well, today I bit the bullet and emailed her to ask her what stage I was. I haven’t been told exactly…but wasn’t sure I was ready to know either. Anyhow, I sent her and email…and wanted to barf waiting on my results in an email back. DING…. that was my phone….Here it is, the email from Carol that will say what stage I am. (holding back vomitting I read)

Your Type of Breast Cancer, as you know, is triple negative: E – negative, P – Negative and HURS2 – Negative, which tells the Dr what types of chemo you need and what your tumor responds to.

The stage of cancer is based on the size of the tumor and if it has spread to lymph nodes or any place else.

Your Stage is 2A – which means your tumor was 2cm – 5 cm (3/4 inch to 2 inches), but it has not spread to any lymph nodes and there is no evidence it has spread anywhere else (that is called metastasis). That is good! This is not a high stage – it goes Stage: 0, 1A, 1B, 2A, 2B, 3A, 3B, 3C, and 4. So you are on the good end of stages and it hasn’t spread!!
———————————————

So… there it is. Jennifer Rose Rigano-Denbo has been broken down into a single letter and number…… 2A

The first thing I did was count the stages to see where I fell on the graph line. ( every cancer patient must do this) Well, I am officially #4 of 9 possible. I’m not exactly sure how to feel about this? Should I be happy, sad, mad? I guess I just don’t know what to think just yet. I am a letter and a number. I guess it could be a whole lot better…but on the flipside….a whole lot worse.

With the two articles I read today made me feel not alone. I live in a small town in Missouri and don’t really google things all day long. These two items just landed in my lap, and I am quite shocked. But then again at 32 I was diagnosed with a very aggressive form of breast cancer…so I’m not totally surprised. I hope women know that this part of their body they are more in control of and should check their breasts monthly. A yearly mammogram just doesn’t seem enough anymore.

It saddens me this is happening and we don’t know why. It also saddens me that it’s happening to me…period.

——————————————–
February 26, 2013
Study Sees More Breast Cancer at Young Age
By DENISE GRADY
The incidence of advanced breast cancer among younger women, ages 25 to 39, may have increased slightly over the last three decades, according to a study released Tuesday.

But more research is needed to verify the finding, which was based on an analysis of statistics, the study’s authors said. They do not know what may have caused the apparent increase.

Some outside experts questioned whether the increase was real, and expressed concerns that the report would frighten women needlessly.

The study, published in The Journal of the American Medical Association, found that advanced cases climbed to 2.9 per 100,000 younger women in 2009, from 1.53 per 100,000 women in 1976 — an increase of 1.37 cases per 100,000 women in 34 years. The totals were about 250 such cases per year in the mid-1970s, and more than 800 per year in 2009.

Though small, the increase was statistically significant, and the researchers said it was worrisome because it involved cancer that had already spread to organs like the liver or lungs by the time it was diagnosed, which greatly diminishes the odds of survival.

For now, the only advice the researchers can offer to young women is to see a doctor quickly if they notice lumps, pain or other changes in the breast, and not to assume that they cannot have breast cancer because they are young and healthy, or have no family history of the disease.

“Breast cancer can and does occur in younger women,” said Dr. Rebecca H. Johnson, the first author of the study and medical director of the adolescent and young adult oncology program at Seattle Children’s Hospital.

But Dr. Johnson noted that there is no evidence that screening helps younger women who have an average risk for the disease and no symptoms. “We’re certainly not advocating that young women get mammography at an earlier age than is generally specified,” she said.

Expert groups differ about when screening should begin; some say at age 40, others 50.

Breast cancer is not common in younger women; only 1.8 percent of all cases are diagnosed in women from 20 to 34, and 10 percent in women from 35 to 44. However, when it does occur, the disease tends to be more deadly in younger women than in older ones. Researchers are not sure why.

The researchers analyzed data from SEER, a program run by the National Cancer Institute to collect cancer statistics on 28 percent of the population of the United States. The study also used data from the past when SEER was smaller.

The study is based on information from 936,497 women who had breast cancer from 1976 to 2009. Of those, 53,502 were 25 to 39 years old, including 3,438 who had advanced breast cancer, also called metastatic or distant disease.

Younger women were the only ones in whom metastatic disease seemed to have increased, the researchers found.

Dr. Archie Bleyer, a clinical research professor in radiation medicine at the Knight Cancer Institute at the Oregon Health and Science University in Portland who helped write the study, said scientists needed to verify the increase in advanced breast cancer in young women in the United States and find out whether it is occurring in other developed Western countries. “This is the first report of this kind,” he said, adding that researchers had already asked colleagues in Canada to analyze data there.

“We need this to be sure ourselves about this potentially concerning, almost alarming trend,” Dr. Bleyer said. “Then and only then are we really worried about what is the cause, because we’ve got to be sure it’s real.”

Dr. Johnson said her own experience led her to look into the statistics on the disease in young women. She had breast cancer when she was 27; she is now 44. Over the years, friends and colleagues often referred young women with the disease to her for advice.

“It just struck me how many of those people there were,” she said.

Dr. Donald A. Berry, an expert on breast cancer data and a professor of biostatistics at the University of Texas’ M. D. Anderson Cancer Center in Houston, said he was dubious about the finding, even though it was statistically significant, because the size of the apparent increase was so small — 1.37 cases per 100,000 women, over the course of 30 years.

More screening and more precise tests to identify the stage of cancer at the time of diagnosis might account for the increase, he said.

“Not many women aged 25 to 39 get screened, but some do, but it only takes a few to account for a notable increase from one in 100,000,” Dr. Berry said.

Dr. Silvia C. Formenti, a breast cancer expert and the chairwoman of radiation oncology at New York University Langone Medical Center, questioned the study in part because although it found an increased incidence of advanced disease, it did not find the accompanying increase in deaths that would be expected.

A spokeswoman for an advocacy group for young women with breast cancer, Young Survival Coalition, said the organization also wondered whether improved diagnostic and staging tests might explain all or part of the increase.

“We’re looking at this data with caution,” said the spokeswoman, Michelle Esser. “We don’t want to invite panic or alarm.”

She said it was important to note that the findings applied only to women who had metastatic disease at the time of diagnosis, and did not imply that women who already had early-stage cancer faced an increased risk of advanced disease.

Dr. J. Leonard Lichtenfeld , deputy chief medical officer of the American Cancer Society, said he and an epidemiologist for the society thought the increase was real.

“We want to make sure this is not oversold or that people suddenly get very frightened that we have a huge problem,” Dr. Lichtenfeld said. “We don’t. But we are concerned that over time, we might have a more serious problem than we have today.”

Found this interesting! Seeing how I have breast cancer at 32.

So, my doctor referred to my chemo week as “week 15” last Wed. was the start of “week 16” So every Wed. I will count down another week closer to (hopefully) being done with chemo! He won’t promise I need 16 weeks, or if I’ll need more….and trust me I really wanted something in writing 😉 BUT….let’s end on a good note and say Yes to 16 weeks and done. Last treatmemt if we stay on course is around May 29th:)

Well, good and bad. White blood cell was low – 1,600. But the Doc didn’t seem to be too surprised. Tumor marker went from a 29 to a 23. They don’t even test normal people for cancer unless its over 32…hey! maybe I’m cured and cancer free! I’ll never understand that.

Anyhow, that’s my update, will chat later:)

waiting to get bloodwork to see what my count is… hopefully it is! I do live with 2 children, so I have to be realistic;)

As my kids just left with John for taekwondo, my heart broke. Even on my off weeks of chemo I may still feel like shit and not be able to do things??? what the hell?? I don’t even get a break for one day and seem like a normal person. Although as I sit here with no breasts at 32, how in the world can I mumble the words “normal person?”

I am upset. That was my job! That was my duty! Then cancer comes and ruins my entire life. I can’t do the things I use to, and can’t be around the people I use to. Seems unfair to me. This is 4 months of hell, maybe more and it seems like a lifetime. Life is precious and I feel as though I am missing special days and moments with my kids. I don’t need a reminder to thank the Lord everyday I wake up…but some days it’s not easy to see through the fog of cancer. Damn. 😦

My good moment: John I love you for all that you are, and all you continue to be. Thank you for stepping up and being a good husband and dad. 🙂