Two Year Anniversary

This month marks the second anniversary of my cancer diagnosis.  My disease was identified by accident in August 2010 during a pre-operative sonogram prior to a hysterectomy.  The sonogram radiologist thought I had lymphoma. From what I’ve heard from other patients, this occurrence is not unusual.  Both my ob/gyn and my primary care physician (PCP) called me to discuss these results and to refer me to a hematologist/oncologist specializing in lymphoma.  However, because it was August, neither of these doctors was available for an appointment. They were either on vacation or they had just returned and were handling emergencies with current patients. I was scared and freaked out.  Here I was with cancer with no one to see me.  Finally, my PCP managed to get me in to Dr. L who agreed to see me as his last appointment before leaving on a two week vacation.  Dr. L was very nice and helpful given how scared I was.  He examined me and stated that I had no signs of lymphoma.  He did some blood tests and scheduled me for a CT guided biopsy. Upon Dr. L’s return, I learned that the biopsy was positive for carcinoid.  He then ran the CgA and 5-HIAA (both were elevated) and I was diagnosed.  I was fortunate. This was a very quick process, given how long it sometimes takes other patients to get a carcinoid diagnosis.  This was a good outcome, despite the NY medical community acting like Parisians and taking the month of August off.

In hindsight, the carcinoid was a better diagnosis than most cancers because 2 years later, with 5 CT scans, a ⁶⁸-GA PET, and 19 Sandostatin LAR shots, I have had no progression or changes in my tumors.  If it had been some other cancer, I could have been dead by now. 

Nonetheless, since August 2010, I have been in what I would call the “cancer loop”. This means that I get scanned at least twice a year and then see the oncologist to find out if there has been tumor progression.  The best outcome that I can have is called progression free survival or PFS.  In between scans I get monthly shots of Sandostatin LAR which is anecdotally shown to slow tumor progression, although there have been no clinical studies to prove this outcome.  The Sandostatin has ended the only symptom I had, which was very occasional (once every 2-3 months) flushing, which never bothered me that much.  The monthly shots and the drug side effects cause me more angst than the flushing ever did.

Alternatives for my situation are surgery to remove the visible tumors or chemotherapy, which does not usually work that well for carcinoid patients.  I could go to Europe to get a radio-nuclear therapy called peptide receptor radionuclide therapy (PRRT). This is known to shrink tumors but not to cure the disease. Steve Jobs and many other Americans had/have PRRT in Europe to treat neuroendocrine tumors because it is not FDA approved in the US yet. 

Given that I continue to be progression free and feel no symptoms, I still question why:

A)     I am getting treated at all?

B)     I am taking Sandostatin when I have no symptoms and the drug has not been proven to slow tumor growth?

C)    I would need a major surgery as has been suggested by Dr. Liu and presumably, my current NY oncologist?

My doctors think my tumors have been there for many years. If they are not bothering me, why should I do something drastic that could make the treatment worse than the disease?  Perhaps if and when there is some symptom or progression I should then consider surgery?  I’ve heard that carcinoid tumors are found in about 1% of autopsies of people who died from something else so perhaps mine were just found early and I might never have a problem or symptom.  Is this just wishful thinking?

This week I am accompanying another carcinoid patient to a surgical consult. She is in a similar, though not identical, situation to mine and has been recommended for surgery. I am hoping to be a good listener and take notes for her. I also hope to learn about what is involved in this sort of surgery.  I want to be better informed as I go through this journey and consider my options.  I feel very lucky that I am meeting so many other people with this rare cancer through the online and local support groups as well as patient conferences.

⁶⁸GA PET Scan at Vanderbilt

On Monday, I had my appointment with Dr. Eric Liu, followed by my scheduled ⁶⁸GA PET scan.  This was my first scan other than a CT.  I was nervous about being injected with a radioactive tracer -- it just sounds a bit scary. 

Dr. Liu was very articulate and professional and spent a lot of time with me.  I was very impressed with my experience at Vanderbilt-Ingram Cancer Center.  Dr. Liu talked about my experience to date to gather some history.  He said the ⁶⁸GA PET scan would answer two questions:

1)     Do I have appropriate receptors for the scan to work?

2)     What is the extent and location of my disease?

The doctor said I was the last of the 50 patients that were in this clinical trial.  He also mentioned, as has been debated in the on-line support groups, that he would appreciate it if I made a $2,000 contribution to Vanderbilt. The money would allow him to continue this important work to secure FDA approval for this scan in the US.  This cost was explained to me up front before my appointment so there was no surprise here. 

Dr. Liu said the injection should not hurt or cause any side effects but an EKG was required before and after the scan.  He assured me the radioactive tracer has a very short half life and that I would be fine going through airport security the next day.  We also discussed my doctor experiences in NYC, some of which had been “suboptimal”, and how it might work if I were to use him to treat my disease since I live so far away.

The prep for the scan included the EKG and the ⁶⁸GA injection.  Then I drank the same large container of barium contrast that I have had for all my CT scans.  This process took about an hour.  The injection did not sting, burn or cause any adverse consequences.  The PET scanner is similar to a long CT scan machine. The drill is that you have to lie on your back with your arms above your head and not move for about 30 minutes.  The machine does not tell you to breathe in and out like the CT scanner does.  Some people have issues being put into the enclosed tunnel-like machine but I just kept my eyes closed and tried not to move.  Dr. Liu came into the room while the scan was going on – this surprised me as I had my eyes closed. He encouraged me to stay still and that I was doing a great job. It was a nice pep talk.

After the scan was over I went for the second EKG and then to lunch.

Later in the afternoon, we met again with Dr. Liu.  He said he did not have the report yet but that I was positive for the receptors and although I have extensive disease, there is no evidence of metastatic disease outside of the abdomen/pelvis.  With the help of a radiologist, Dr. Walker, we reviewed the scans. The CT scan was right beside the ⁶⁸GA scan on the computer screen.  It was quite amazing, though I had no idea what we were looking at.  The doctors said I had very low liver involvement with one definite liver metastasis to the right lobe and a possible metastasis to the left lobe.  There is multifocal small bowel disease.  That is where the primary tumor is located. 

Dr Liu said that he definitely thinks that this is resectible because all of the tumors are in the abdomen. Surgery, although it is not curative, would mean that I would most likely die of something else other than carcinoid cancer.  He described the surgery as major - probably 6 hours in the operating room with a 6-8 week recovery period.  He would want to perform other tests such as an endoscopic ultrasound and surgery diagnostic labroscopy prior to any major surgery.  The Doctor also wants to get some live tissue for pathology work. My original biopsy slides are exhausted/used up.  

The doctor believes surgery is the best way to tackle my specific disease and believes sandostatin is just patchwork, of little long term help without a surgery.  He also thinks that Peptide Receptor Radionuclide Therapy (PRRT) would not be necessary after a surgery because most of the disease would be gone and it would take a very long time to grow back.  He said the best places for PRRT are Sweden (where he studied) and Bad Berka in Germany.  He said the major side effects from PRRT are kidney damage and bone marrow suppression. 

This was a lot of information to process and I am very scared to undergo a large surgery like he describes.   Dr. Liu said that he really would like to do this surgery himself and I would need to stay in Nashville for 2-3 weeks if he were to do it.  He said that he is very comfortable with Dr. Sasan Roayaie at Mount Sinai in New York as well. Dr. Roayaie is a liver transplant surgeon but also does this type surgery. 

I need to do some thinking and reviewing my choices about treatment.  I will wait for all the written reports and meet with my doctors here in New York to get further information.  I thought Dr. Liu was the most helpful and articulate doctor I have seen so far to discuss this disease and I would highly recommend him. 

Is There Too Much Breast Cancer Awareness?

The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute (NCI) is an authoritative source of information on cancer incidence and survival in the United States. SEER currently gathers and publishes information from population-based cancer registries covering approximately 28 percent of the US population.  The table below shows the SEER data for four of the most common type cancers as well as Neuroendocrine Tumors (NETs).  A caveat here: The four most common cancer statistics come from SEER data from 2004-2009.  The NETs data is from 2004 alone and was taken from an article by K.E. Oberg, one of the foremost NET cancer doctors in Europe.

Type of Cancer	Incidences per 100,000 people
Prostate	154.8
Breast	124.3
Lung	62.6
Colon	46.3
Neuroendocrine Tumor (NETs)	5.3

From what is frequently in the media, one might think that breast cancer is the most common cancer. Yet prostate cancer has a 25% higher incidence rate!  It’s interesting to me that this more frequent cancer lacks the organized marketing effort of breast cancer.  Where are the blue ribbons????   Where are the races in Central Park?

The chart above shows that NETs have a much lower incidence rate than any of these common cancers.  That explains why one doesn’t see many doctors that know about or treat this cancer.  This is why NETs are considered a rare or “orphan” disease by the National Institutes of Health. 

According to the Centers for Disease Control, the largest cause of all deaths among women is heart disease – see table below: 

Cause of Death	Percent
Heart Disease	25.1%
Cancer	22.1%
Stroke	6.7%
Chronic lower respiratory diseases	5.5%
Alzheimers	4.2%

Source:  Centers for Disease Control – Data as of 2007

The largest cause of cancer deaths among females is from lung, not breast cancer.  A female in the US is 73% more likely to die from lung cancer than breast cancer.*  Breast cancer is the second most likely cause of death among women, followed by colon cancer.

I get tired of hearing about breast cancer all the time.  It gobbles up enormous amounts of time, resources and attention when we should be raising funds for heart disease, lung cancer and other diseases.

I will be taking a few weeks off from blogging and will post again after I get back from my trip to Vanderbilt for the GA⁶⁸ PET scan.

* United States Cancer Statistics (USCS) 1999–2008 Cancer Incidence and Mortality Data

How  We Do Harm - A Doctor Breaks Rank About Being Sick in America

This book was written by Dr. Otis Webb Brawley, Chief Medical and Scientific Officer of the American Cancer Society as well as a professor of hematology, oncology, medicine and epidemiology at Emory University in Atlanta.  Overall Dr. Brawley is an advocate for evidence based medicine, as I believe every doctor should be.

How We Do Harm is one of the better books I have read on how cancer is treated in the US.  It covers some of the issues with overtreatment, the relationship between doctors and pharmaceutical companies as well as how different people get treated depending on their financial situation and insurance coverage.  The book may overlap with The Emperor of All Maladies and Overdiagnosed.  Nonetheless, it will give the reader a needed dose of skepticism as well as an incentive to be your own advocate.  Caveat Emptor!

Some of his terminology is funny in a sad way including:

Wallet Biopsy:  An analysis of the patient’s financial durability.  This is particularly relevant for cancer patients dealing with the high costs of their treatment.

GOMER:  Get out of my emergency room .This one came out of a book named The House of God that refers to “a person who has lost – often through age-what goes into being a human being.  A GOMER could be demented residents of nursing homes whose bodies wouldn’t die”.  Another category of GOMER is:

“LOL in NAD:  Little old lady in no apparent distress.  This refers to an elderly woman, perhaps a widow, who comes into the emergency room probably needing some psychiatric help - or more, likely, some simple human companionship".

I’m including these terms because I find them amusing. They may also help give the reader a flavor of the cynicism and humanity involved in being a doctor. 

A decent portion of the book is spent on pharmaceutical companies and their inherent conflicts of interests with doctors.  Specific examples are Procrit (Johnson & Johnson) and Aramesp (Amgen) that were used to build up hemoglobin in patients undergoing or subsequent to chemotherapy.  Procrit was approved by the FDA in 1993 based on a very small study of only131 patients.  It was introduced first and featured television advertising to patients talking about getting their strength back after chemotherapy.  This culminated with a Super Bowl ad in 2003

. 

Amgen responded with a competing drug (Aramesp) in the early 2000’s and struck a deal with oncology practices to buy the drug in bulk, offering rebates of up to 20% of the cost, depending on prescription volume.  By 2006, sales of the drug were $4.85 billion in the US.   Two larger randomized studies showed the placebo group lived longer than those being treated with these drugs!  The second trial was stopped due to this fact.   After 13 years on the market, the evidence showed that patients on these drugs had higher incidences of heart attack and stroke. The two drugs also caused “tumor promotion”, meaning they caused tumors to grow.  The FDA put severe restrictions on the use of both Aramesp and Procrit in 2010, but not before making many oncologists rich.

Another FDA approval was for a combination of Gemzar and Tarceva for use in pancreatic cancer because it increased median survival by a grand total of fourteen days!

This anecdote hit close to home for me: It is about doctors stricken with post traumatic stress disorder (PTSD) from treating so many patients who will die.  “Many of my colleagues have learned to ward off PTSD by becoming assholes”.

Another case depicted a patient who demanded treatment despite protocols against it.  The patient had 3 doctors, including Dr. Brawley, advise against chemotherapy.  The primary doctor treating the patient said “People like that get what they want.  If I hadn’t done it, someone else would have”.

At the other extreme is the family who wants to keep the patient alive when there is no hope for a cure or any quality of life.  The author touches on this and denotes statistics that seem to be all over the news these days such as:  “24% of Medicare spending and 15% of all health spending is in the last year of a patient’s life”.  This is unsustainable, causes unnecessary suffering and keeps others from getting decent healthcare. 

This was a very readable, enlightening yet disturbing book. I would highly recommend it to anyone with cancer or a chronic disease. 

Affordable Care Act and Cancer

On Thursday, the Supreme Court upheld the Affordable Care Act (ACA) by a 5-4 vote.  Surprisingly, John Roberts sided with the four liberal justices to make the majority.  Everyone was expecting that if it passed, Anthony Kennedy would have been the swing vote.  In today’s New York Times, Tom Friedman states about John Roberts “It’s the feeling that it has been so long since a national leader ‘surprised’ us...I think it was inspired by a simple noble leadership impulse at a critical juncture in our history – to preserve the legitimacy and integrity of the Supreme Court as being above politics” This post is not meant to be political – it is about the healthcare system and how it works when you have cancer or any other pre-existing condition.



Brian McFadden - The New York Times

Currently, my health insurance is mostly paid for by my employer. I contribute a portion to the cost through payroll deductions, insurance company deductibles and out of pocket expenses.  Since I am asymptomatic, I have told no one in my department that I have cancer and don’t intend to unless I need to take time off for sick leave.  My company’s benefits department must know that I have cancer since it shows up in the company’s insurance costs.  If my company downsizes and I am terminated, I could receive COBRA for 18 months. But due to the cancer diagnosis - a pre-existing condition, I am virtually uninsurable.  I am ineligible for Medicare for another 12 years (age 65) and I am not poor enough for Medicaid.  The Affordable Care Act (ACA) will allow me to get medical coverage should I be jobless and not out on disability.  This is a huge benefit and relief to me as a cancer survivor.  My cancer costs have been running about $70,000 annually and I am only taking monthly shots of Sandostatin and getting semi-annual scans – no surgery, chemotherapy or other treatments for the disease at this point.  I have no idea how much it will cost for me to get into one of the pre-existing condition insurance pools but I have to believe it will be substantially less than the $70,000 per year my insurance company is currently paying for my treatment.

There is another issue that is a concern to me as an employed cancer survivor and unrelated to the ACA: What might I need to do if I wanted to change jobs?  Suppose I interview for a new job and they want to do a pre-employment physical?  I know the new company will not hire me if they know I have cancer. Is it appropriate to handle it with something similar to “don’t ask, don’t tell”?  Should I not mention the cancer drugs I am taking if asked? This worries me as I am not sure if the new employer would know I have cancer before I got hired. But not disclosing my situation and then signing up for their health insurance could get me fired.  If I am in one of the pre-existing condition insurance pools that are part of the ACA, do I still have to worry about this?  These are things I think about as Wall Street continues to downsize and consolidate or if a better job prospect comes up.  Having a pre-existing condition is a big problem from an insurance and employment perspective. I am hoping the ACA will help me if I ever need insurance if I am unemployed or retired before age 65.

Who’s Paying Your Doctor?

Prior to being diagnosed with cancer, I did not have much interaction with doctors or the medical establishment.  I knew that the pharmaceutical industry paid doctors to prescribe drugs - with resulting conflicts of interest.  Since I was not taking any drugs, this did not really matter to me. 

Drug companies do indeed pay millions of dollars a year to physicians for speaking and consulting.

A series of “whistleblower” lawsuits brought by former employees of those companies allege those payments often were used for illegal purposes — financially rewarding doctors for prescribing their brand-name medications.  MultimediaIn several instances, the ex-employees say, the physicians were encouraged to push “off-label” uses of the drugs — those not approved by the U.S. regulators. This marketing tactic is banned by federal law.

After being diagnosed with cancer, but before I went to MSKCC to see a specialist, I looked into Sandostatin, the drug that Dr. L had recommended. I did not have to look too far. It had shown up on the front page of the Wall Street Journal and New York Times.  As a financial services employee, these are my regular reading materials.  On September 30, 2010, Novartis, the maker of Sandostatin, settled a whistleblower lawsuit filed by the Department of Justice regarding the payment of illegal kickbacks to health care professionals through mechanisms such as speaker programs, advisory boards, entertainment, travel and meals. These were inducements to prescribe Trileptal, as well as Diovan, Zelnorm, Sandostatin, Exforge and Tekturna.  Novartis paid $422 million as a civil penalty without admitting any guilt.  As a result of this settlement, Novartis had to disclose payments to any doctor or medical institution receiving any compensation from the company on a quarterly basis.  The link to payments is at: 

http://www.pharma.us.novartis.com/info/corporate-responsibility/payment-to-hcp.jsp  

On November 2, 2010, I had my first appointment with Dr. Jekyll at MSKCC.  He wanted me to start Sandostatin immediately.  The following week he cited the PROMID study as a rationale for this treatment plan.  The PROMID study, funded by Novartis, found that patients taking a 30 mg monthly dose of Sandostatin had a median time to progression of 14 months longer than those on placebo.  Dr. Jekyll acknowledged the conflict of interest inherent in this study and said that there have been no independent studies to confirm these results.

I subsequently found a bio of Dr. Jekyll on a website where he had to disclose his conflicts of interest and it is below:

“Disclosure: Dr. Jekyll has disclosed that he has financial interests, arrangements, or affiliations with the manufacturer of products or devices to be discussed in this activity or who may financially support the activity: Consultant: Alchemia Limited; Bayer HealthCare; Delcath Systems; Genentech, Inc.; ImClone Systems Incorporated; Merck & Co., Inc.; Novartis Pharmaceuticals Corporation; Pfizer Inc.; Roche Laboratories, Inc.; YM BioScience Inc. Grant/Research Support: Amgen Inc.; Bayer HealthCare; Bristol-Myers Squibb Company; Genentech, Inc.; ImClone Systems Incorporated; Merck & Co., Inc.; Pfizer Inc.; Roche Laboratories, Inc.; Taiho Pharmaceuticals Co., Ltd.”

No wonder he had no interest in treating patients! 

My intent with this post is just to inform others that doctors may have conflicts of interest. They can be influenced by outsiders who are paying them to do things which may not be in the best interest of their patients.  Knowing all this information, I continued with the treatment plan of Sandostatin LAR and am still getting monthly injections of this drug.   In a recent article by  Dr. K.E. Oberg from University Hospital in Uppsala, Sweden titled “The Management of Neuroendocrine Tumors:  Current and Future Therapy Options”, the author states the following: “There has been a dramatic improvement in survival of patients with NETS diagnosed between 1988 and 2004 compared with those diagnosed earlier, based on data from the SEER database.  Coincidentally, this survival improvement in the past 20 years corresponds with the introduction of Octreotide (Sandodatin) in 1987.  Historically, the 5 year survival rate was 18%, but it has improved to 67% in patients who have received Somatostatin analogs.”

There have been quite a few whistleblower lawsuits over the past few years.  There is also another website that one can check to see if your doctor is receiving payments from any drug company.  Propublica, an independent not for profit news room, has compiled a list of doctors receiving payments from those drug companies which were forced to disclose this information as a condition of settlement of these lawsuits.  Unfortunately, this list only covers about 40% of the drugs prescribed in the US.  There are plenty of other doctors taking funds from big Pharma that are not on this list.  The link below from Propublica will inform you if your doctor is receiving money from the pharmaceutical companies involved in these lawsuits:

http://www.propublica.org/series/dollars-for-docs

I think that the reason that Americans take so many drugs is because the drug companies have promoted their products aggressively through the medical community.  In the USA, we have higher mortality and take more drugs than others in the developed world. Yet, these other nations have a substantially longer life span. I believe this is due to these payments and incentives for doctors in the US to prescribe drugs.  I would like the system to be more transparent. I would like to know what percentage of my doctor’s income is coming from patient and insurance reimbursements compared with income from “speaking engagements and other work” from pharmaceutical companies.  Doctors can and do take offense from this line of questioning and are not very transparent about this even if asked.  I don’t expect this to change very soon but it is an important issue from a patient perspective. 

The Difference Between a Flush and a Hot Flash

In the book Fifty Shades of Grey, Anastasia Steele devotes a lot of time to flushing. This is not even close to one of the book’s themes.  I would probably not have noticed this particular feature if I did not have carcinoid cancer.  Skin flushing is a sudden reddening of the face, neck, or upper chest. Flushing is a normal body response that may occur when you are embarrassed, angry, excited, or experiencing some other strong emotion.  In the above book, Anastasia’s flushing is due to these reasons.

I started flushing in my mid-40’s; not very often – maybe once every 2-3 months. It would occur for a few minutes, almost always at mealtimes - either breakfast or lunch.  Since this was a seemingly random occurrence and I was starting to experience perimenopausal symptoms, I thought that the flushing was part of this hormonal change of life.  I could feel burning and the heat flow up to my face.  I could tell I was red even if no one said, as they sometimes did, “Wow Beth, your face is quite red”.  It was clear and noticeable but it only lasted a few minutes and then it would not recur for a few months.  There was no sweating involved, just a stinging/burning feeling, similar to getting slapped.   After a few instances of this flushing- and having some friends say that they don’t think it is from perimenopause - I considered that I might have a food allergy since it only happened around mealtime.  I tried to remember what I had eaten that would cause this flushing but I was not tracking closely. There did not seem to be any trigger foods. 
 
Below is a picture of me and my Aunt Judy – we had gone to lunch to celebrate her 80^th birthday.  This was in 2010, right around the time of my carcinoid diagnosis.  I am clearly red and it is right at lunchtime – a typical occurrence for me.

I started taking Sandostatin LAR in January 2011 and I have not had a flushing incident since, at meal or any other times.  I still get red and sweaty at the gym, as I always have. This redness is accompanied by sweating so I do not consider this flushing. 
  
I did not get the typical menopausal hot flashes until about 12 months ago at age 52.  This feeling is quite different than a flush.  When getting a hot flash, I get immediately sweaty, mostly around my hairline and neck and this can spread so that I feel sweaty all over.  The hot flashes seem to be worse when the weather is warm – i.e., they seem to take a break during the winter.  Hot foods, such as soup and tea can also exacerbate them.  I have moved to iced drinks instead of hot ones.  I also have hot flashes at night and they can disturb my sleep.  There is no flushing or redness associated with my hot flashes.
 

My ob-gyn said hot flashes can go on for 5-10 years and that it is good to wear layers so you can take them off, have heavy and light blankets on the bed so you can shed them and if you use an electric blanket, make sure it has dual controls.  I feel like my internal thermostat has gone haywire as the hot flashes can happen at any time with no notice.  This is quite normal and all my female friends in the same age range are having some version of this so we can all gripe together.

I think it is important to understand how to recognize flushing versus other symptoms.  Suntans, regular blushing/flushing as described above, rosacea or other conditions might cause you or your health care professional to think you are flushing due to carcinoid when you really may not be.  Alternatively, flushing due to carcinoid can be mixed up with other conditions as well.