Remembering Diagnosis #1 and #2

One thing is certain: I don’t need October to remind me of breast cancer. It is in my mind when I wake up in the morning, throughout the day, and in my mind when I fall asleep at night. But this October I got the added bonus of TaTa Tuesdays and check your “BOO”bies. To say those cutesy names annoy me would be a gross understatement.

Today I say goodbye to October. Tomorrow is hello to November! I get to prepare for birthday #54! Truly excited for that day.

On this final day of Breast Cancer Awareness Month, I will leave you with two entries that I found while recently looking through my old journal. I was a much younger me (13 years ago), so full of hope that I would be okay after my first and second diagnoses before things dramatically changed in 2013. Today, I am still hopeful.  After all, hope is all I have when it comes to my tomorrows. That is true for all of us, cancer or not.

From My Journal:
April 25, 2005. (Before I went into surgery)
Words to my children--ages 10, 10, 9, 2.

I’m writing now so you don’t forget that my whole life has been worth it because of you.
I write this on the following pages so you know what I experienced. Maybe it will help you understand what happened to me if I am not here to describe it to you.

Last June I experienced some pain just above my areola on my right breast. The pain was a pinching sensation that would come and go. The feel of my breast was not lumpy, but firm on the top. (I had an enlarged lymph node too.) A mammogram and an ultra-sound were clear. I was told it was most likely caffeine causing my pain. I went on with life until a woman told me about her cancer diagnosis and the bi-lateral mastectomy that occurred because of it made me wonder. A week or so later the pain started occurring again—the same pinching sensation almost like my breast was beginning to let-down milk for a nursing baby. I began feeling for lumps. Still had the same firmness as before. I did feel a little BB sized knot in the area of pain. I pressed and to my astonishment some milky fluid came out of an opening in my nipple. The fluid was yellowish, greenish and thick and a little sticky.

I made the appointment. with my doctor for Monday March 28th. (2005) She sent me to get an ultra sound and a mammogram--again. Those were scheduled for Thursday March 31st. She also suggested I see a breast surgeon. On Monday, April 4th, I was told the results were clear including the lymph node I was worried about. The next day I saw the breast surgeon. She was quite concerned about the “mass” located at 12 o’clock on my right breast. A biopsy was done in her office. Because the hole from which the tissue was taken wouldn’t stop draining, (the same yellowish, sticky substance) the doctor seemed relieved thinking it might be a delayed mastitis. (Really, though? It is 2005. My last child was born 2 years ago.) It drained until 3 am. On Wednesday, she called to say that there were atypical cells found and that the biopsy would be sent to a lab for further evaluation. I could do nothing but wait.

So we went to visit my sisters in Kentucky as planned. Just before we were going into Mammoth Cave the call came from the breast surgeon. Greg fumbled with the phone. The call was dropped as the cell signal was weak. I tried to call her back but nothing. We drove around the parking lot until we had a signal. Through my tears I somehow heard I had Ductal Carcinoma in Situ—cancer in the ducts of my breast--and that I would have to have a mastectomy. She said the diagnosis wasn’t 100% for sure, but she felt confident.

After returning from our trip, on the April 14th, I went in for a 2nd biopsy. More tissue was taken and after 5:00 that day she called to confirm the diagnosis.

On Monday the 18th, I went to see a plastic surgeon. Tuesday I went back to see the breast surgeon. She went over the amount of tissue she was going to take. The plastic surgeon would follow behind her and insert the expanders.

Friday, I was informed that surgery would be performed April 29th. (Things moved quickly.)

All kinds of emotions flow through you with this type of news. Mostly you cry because you don’t want to die and not see your kids grow-up. That is my biggest fear. Other people seem concerned about re-construction. All I care about right now is waking up from the surgery, going home and recovering. I am so scared and worried that cancer cells will be in my lymph node, and I will have to go through chemotherapy. So be it if I don’t have breasts. All I want is my life to spend with my family. I am so lucky to have you. Your daddy has given me so much. Sometimes I don’t tell him enough how much I love him. He has given me everything I have ever wanted or needed.

I love you all.

Dec 31, 2010 (Diagnosis #2 Stage 1, November 2009)

It is about 8 minutes till 12 midnight on New Year’s Eve. This year has been the hardest of my life due to chemo, radiation and Herceptin for a year. My treatments ended Dec 16th with my final Herceptin treatment. On Dec 17th, my port was removed. I am grateful it is over. PET scan showed no cancer!

4 minutes now to go and I am looking forward to a wonderful year. I will try to curse less, and realize that nothing is worth the kind of stress I often experience. The only times worthy of stress are due to the death of a loved one and a diagnosis that could end your own life. I will try to keep that in perspective when things go wrong in my life. 

A bad day is not a bad day when it is a day I lived.

3 seconds. Happy New Year! It is here!

Early May Not Be Early Enough For Some of US

Anne Weston/Wellcome Images-- Cancer Cell

After I was diagnosed with stage one breast cancer in 2009, I harbored some negative feelings toward my surgical oncologist. That wasn’t always the case though. The care she gave me surrounding my stage zero diagnosis in 2005 was wonderful. From the phone call telling me my biopsy was positive for non-invasive cancer to my care following my bi-lateral mastectomy was spectacular. I appreciated her prompt, swift action. I also liked her personally. When I fully recovered, I was left with such hope I would never have to deal with breast cancer again. After I was hit with the second diagnosis I couldn’t stop myself from looking for reasons why my cancer recurred. She was an easy target.

I had seen her a few months before I found my tiny, painful lump signaling my cancer’s recurrence. I remember how upset I was that her trained hands did not find it first. The now five millimeter lump was growing on my chest a few inches below my right clavicle. How did she miss it?

After treatment for this second recurrence ended in December of 2010, life returned to normal, again. I had not seen my surgical oncologist since she surgically removed some extra tissue, to be sure she got it all, after scooping my tiny tumor from my chest right there in her office--as I said, she was swift. Now, since chemotherapy had become a part of my life, someone else was directing my treatment--a general oncologist. My third anniversary from diagnosis was about to be reached. At the time, I was excited about reaching that milestone. For people like me with Her2neu disease, if it is going to recur, I was told, it usually does so in the first 3 years. As time moved along, I was released from seeing my general oncologist every six months to waiting an entire year. Life was good! And, then, there it was. A tiny enlarged lymph node at the front of my neck marking round three of disease and the final chapter of my life telling me I had never been cancer free at all.

When the never-ending treatments for my disease became reality, I couldn’t stop myself from going through the “what if” scenarios. What if the margins between good tissue and cancerous tissue had been bigger after my first surgery? A few millimeters apart just didn’t seem large enough. Since I did not have radiation after my mastectomy because it was only offered to lumpectomy patients, my mind kept circling back to the question: could that have stopped the progression? And, what about those dormant cells that no one has control over. Maybe those cells never awakened therefore making the infusions useless. Maybe if I had been treated for a longer time period that would have made the difference.

There are simply too many variables and no way to ever know if anything could have been done differently to stop me from becoming stage four. It is all a guessing game based on statistics gathered through clinical trials. Contemplating all the “what if’s” and my participation in the “blame game” felt justified. I thought I had been wronged. Ductal Carcinoma In-Situ wasn’t supposed to become metastatic yet that is exactly what had happened.  My mental battlefield kept telling me, well if only this had happened, I would be okay. It was absolutely pointless.

Today, the more I research and read, the more I learn. Because of that, any anger I held toward my surgeon or any of my doctors has softened over time. In those readings I have found a few studies giving researchers reason to suspect that some breast cancers, especially the her2neu type like mine, are metastatic long before a lump or other physical abnormality of the breast can be found either by the patient or a detection device. Metastasis may even begin at the initial onset of disease.

Here is a recent article about early metastasis: here by Sharon Begley @sxbegle, December 14, 2016, entitled Cancer cells spread way earlier than thought, seeding metastases that cause most deaths.

This is an excerpt:

“Earlier research had hinted that some cancer cells set out for distant organs long before a tumor is detectable. A 2008 mouse study, here led by Christoph Klein of Germany’s University of Regensburg, who also led one of the new studies here found that cancer cells reached the bone marrow months before breast tumors formed.  A 2011 study of 30 women with “non-invasive” breast cancer found that eight actually had cancer cells in the bone marrow. In about 8 percent of non-invasive breast cancers, a 2015 study  here reported, metastases develop — even though “non-invasive” means the malignant cells can’t enter the bloodstream and travel to vital organs." . .
. . . "The new studies were done in lab mice. The study at Regensburg found that in mice given the human breast cancer gene HER2, the hormone progesterone triggers the migration of cancer cells almost as soon as they form — that is, before a tumor is detectable. And these early émigrés are better at forming metastases than cancer cells that depart the tumor later.
At Mount Sinai, Aguirre-Ghiso found that a gene called p38 acts as a brake on the departure of cancer cells from still-forming breast tumors. When p38 is silenced and HER2 is activated, the combination awakens molecules that, eventually, mobilize cancer cells into the bloodstream and on to the lungs and bones.”

Frightening, isn't it?

With this new information any anger still quietly lingering within me vanished. If this proves to be true, all of the therapies I have undergone from the beginning never could have been enough to stop the one mutated cell (or cells) floating in my lymphatic system or blood stream while waiting to lay claim on a distant organ. It wasn't enough to stop those cells that had left my breast years before there was any indication of disease. Catching my disease at stage 0 seems early, doesn't it? But, for some of us, early may not be early enough.

For further reading see links below:
http://www.nature.com/nature/journal/v540/n7634/full/nature20609.html
https://community.breastcancer.org/forum/8/topics/720617
http://www.cell.com/cancer-cell/abstract/S1535-6108(07)00372-8

Mammograms At Age 40 or 50?

Normal (left) versus cancerous (right) mammography image

Wikipedia http://en.wikipedia.org/wiki/Mammograpy

The topic of what age is best to begin screening mammograms has resurfaced--well, it really never went away. It has been around since the 70’s when research on the effectiveness of mammograms first began. It is a complicated issue entangled with other complicated issues.

I decided to write about this subject after I read a recent blog post by a former cancer patient, now cancer advocate.  Her post was written in response to an NPR (National Public Radio) article with the headline Congress May Be Forced to Intervene Again on Mammogram Recommendations. The blogger wrote of her disappointment in the NPR reporter leaving out some important facts. My interpretation of her viewpoint is that if Congress intervenes again it would be due to their failure to recognize the research and scientific evidence that screening mammograms starting at age 40 show more harm than benefit for woman of average risk for breast cancer.

The writer of the post gave several reasons women could be harmed by mammograms in the 40 to 49 age group. (You will find the reasons she cited plus a few others closer to the end of this post.) All have grown from clinical trial results and were interpreted by the United States Preventative Services Task Force (USPSTF). I found the reasons to be a weak attempt to persuade me that screenings should start at age 50 instead of 40 for women with no symptoms and no family history of breast cancer. I wondered if my emotional baggage from my own cancer diagnosis was tainting my ability to accept what the evidence was showing. So, I decided to do some research to see if I was missing something.

First, let me explain whose recommendation caused people to pay attention to this issue. It came from the United States Preventative Services Task Force (USPSTF). The Task Force is made up of a small group of doctors and others involved in public health. Their recommendations are considered by insurance  providers, health professionals, and now the Affordable Healthcare Act engaging in medically related decisions. According to Pubmed.gov http://www.ncbi.nlm.nih.gov/pubmed/1544091
an April 1992 report said the USPSTF “was established in 1984 by the US Department of Health and Human Services to develop recommendations on clinical preventive services based on evidence from published clinical research. Guidelines issued in 1989 addressed 169 preventive services in 60 topic areas.” 
 
Their recommendation in 1992 concerning mammograms was “ . . . the USPSTF recommendations on breast cancer screening, which call for annual clinical breast examinations”-- doctor’s physical exam—“after 40 years of age, mammography every 1 to 2 years beginning at 50 years of age, and early screening of women at increased risk for breast cancer.” Somewhere along this timeline, screening was changed to start at age 40. Now, the pendulum is swinging back to the recommendation similar to that of 1992.

Since the Affordable Health Care Act (Obamacare) became law, insurance providers must follow any mandates given by this law. These mandates are spawned from the recommendations by the USPSTF. One of the mandates is insurance providers must cover preventative services. Mammograms are considered one of these services-- I would argue mammograms are not preventative unless preventative means stopping early death, but that is not what I am discussing here.  The USPSTF makes recommendations for those preventative services. (For example, the age to begin screening for breast cancer.) Based on the most recent mandates by the Affordable Health Care Act, insurance providers are currently responsible for the entire cost associated with screening mammograms in asymptomatic women starting at age 40. The United States Congress is the only reason this mandate was established. 

In 2009, age 50 was the magic year to begin screenings. Congress, in an effort to please constituents--I am guessing--intervened by passing legislation telling insurance providers to ignore the Task Force’s recommendation. Health insurance providers were then made responsible for continuing to cover screening mammograms starting at age 40.

The latest draft recently released by the USPSTF  
(http://www.uspreventiveservicestaskforce.org/Page/Document/RecommendationStatementDraft/breast-cancer-screening1 ) basically stays the same as the 2009 recommendation. Both call for women to make a decision about a mammogram based on their particular circumstances; women should be informed about any benefits or harm done by the screenings; woman should understand that the benefits are small at 40 but increase as women age; the recommendations instruct doctors and insurance providers to begin screening mammograms at age 50. 

Because of the recent draft released by the USPSTF, the conversation concerning Congress intervening again has begun. Will they intervene? For political reasons, maybe; the USPSTF has kept the same “C” rating that caused such a stir in 2009. The “C” rating does not make it mandatory for insurance providers to follow the USPSTF guidelines to begin subsidizing screening for breast cancer at age 40—an A or B rating does. This doesn’t mean mammograms at 40 will not be covered; it means it is not mandated.

For a moment, let me take your thoughts in a different direction:
I think people being told by the media that decisions about their healthcare are between themselves and their doctor gives the false impression that they are in control. This is only true if the patient’s health insurance provider approves tests and or treatments requested, or that the patient has a lot of extra cash to pay for such services. For those people not able to pay out-of-pocket healthcare costs, the insurance provider is actually the one making decisions about which health related screenings and treatments they will cover, not the patient or the doctor. 

Now, back to the subject of this post.

What side are you on? The side wanting to keep mammograms starting at age 40 and paid for by health insurance providers because they DO find cancers possibly saving lives in that age group (even though the percentage actually found is low in some studies). Or, the side that says mammograms are not necessary for women in their 40’s due to: unchanged mortality rates, the density of breasts in this age group along with DCIS conditions causing over-diagnosis and over-treatment leading to unnecessary, surgeries, treatments and radiation as well as false positives causing unnecessary anxiety and biopsies resulting in billions of dollars spent.

One of the arguments that agitates me the most against screening mammograms starting at 40 concerns DCIS--Ductal Carcinoma In-Situ is cancer, or sometimes called pre-cancer, inside the milk-carrying ducts of the breast. Presently many people believe treating this condition leads to over-diagnosis and over-treatment. This confuses me because most breast cancers start in the ducts. DCIS is portrayed as a less dangerous cancerous condition rarely invading healthy tissue. I initially was diagnosed with DCIS—stage 0 disease that later became invasive and now metastatic. No one can convince me that this condition is not serious especially when science has not discovered which DCIS conditions will become invasive with the potential to kill. I have read the results of the research. My mind has not been changed despite mammograms not detecting my own cancer. I still think early mammograms are needed to diagnose DCIS and aggressive measures are needed once it is found. More sophisticated screening tools like digital mammography and MRI’s need to be used in this group—not just for women with symptoms. They are more accurate. Unfortunately, they are more expensive, so probably won’t be used in all routine exams any time soon.  Better diagnostic tools to find these conditions even earlier probably would increase the currently unchanged rate of mortality for the 40 year old age group. If it were you, would you care if you might have been over-treated but have no way of ever knowing because your cancer never recurred? 

As my research came to a close I reread this excerpt from the USPSTF draft.

“. . . screening mammography in women ages 40 to 49 years means that the USPSTF concluded that the benefit of screening mammography outweighs the harms in this age range, but only by a small amount. . . Women ages 40 to 49 years must weigh a very important but infrequent benefit (small reduction in breast cancer deaths) against a group of meaningful and much more common harms (overdiagnosis and overtreatment; unnecessary and sometimes invasive followup testing and psychological harms associated with false-positive tests; and false reassurance from false-negative tests). Women who value the possible benefit of screening mammography more than they value avoiding its harms can make an informed decision to begin screening.” 

http://www.uspreventiveservicestaskforce.org/Page/Document/RecommendationStatementDraft/breast-cancer-screening1

Did you catch that?--“benefit of mammography outweighs the harm”. How can that be? I had the impression from the blogger’s post that started my investigation that mammograms should begin at age 50 was due to harm being greater than the benefits. Then I read the excerpt above and realized the more harm rationale is not quite what the recommendation says.

There is only one reason that stands out to me as the most legitimate reason women may one day have to wait until age 50 to be screened—costs. Costs are not one of the Task Force’s considerations. The other 8 reasons seem like an exercise in obfuscation when the debate should be about the financial health of insurance providers. (I am not suggesting here that insurance companies are evil.  I personally could not begin to pay for my cancer treatment. Blue Cross Blue Shield has always been exceptional in their customer service and efforts in helping me get the care I need.) I can't help but feel that trying to convince people that early screening causes harm, although may be true to some degree, may not be the driving force behind the age change. It sounds better to the public than “well . . . we can’t spend the money on you because there are simply not enough of you that this helps.” It is a cost-benefit issue not a harm-benefit issue. Money does need to be spent where it does the most good for the most amount of people without crippling an insurance provider financially. Unfortunately, some of us will be on the losing end. 

This disease is complicated. There is no way to tell exactly which women would have lived cancer free lives if they had gone with a more conservative treatment approach after their diagnosis. Sure, politicians don’t want to seem like they hate women by not forcing insurance providers to pay for screenings. Providers don't want to give the appearance they are not interested in helping people and are more worried about profit. The reality is insurance companies providing financial assistance to their clients must spend money where the most people are helped. Money is a factor in all decisions, so is saving lives. Sadly, there is a limit to both.

Biopsies and surgeries do hurt and cause anxiety, but nothing compares to living with stage IV cancer. So even with the evidence that the benefit of mammograms in this age group is small, I still believe mammogram screenings should start sooner rather than later whenever possible. Your life could be the one depending on it.

As I said in the beginning:  This is a complicated issue.