Third Time’s the Charm?

I am now in the process of finding a new doctor to treat my carcinoid cancer.  This new doctor will be my third since my initial diagnosis in August 2010.  I started with Dr. Jekyll at Memorial Sloan Kettering Cancer Center. That lasted about 15 months.  Then I went to Dr. Ratner at Mount Sinai who works with Dr. Warner – I’ve been with him just over a year.

I have never had any trouble with doctors before I had cancer.  However, I have not had a really serious medical issue like cancer before either.  

A few months ago in the magazine “Consumer Reports on Health”, the editor wrote a note called “Why I like my doctors”.  In it she says, “I like my doctors because they are smart, compassionate and punctual.  They take time to answer my questions and address my many concerns”.  Research has shown that a doctor who connects with a patient is often successful in encouraging them to comply with medical advice and regimens that can lead to a healthier life.  She says she likes her doctors because “I believe they have my best health in mind.  It’s easy for me to listen to them because I know they listen to me.”

 

When one has cancer, I believe it is important to go to a multidisciplinary center where they have oncology, radiology and surgery departments and everyone works together.  My first doctor was at Memorial Sloan Kettering Cancer Center (MSKCC) which is a very strong multidisciplinary center.  My doctor, however, was neither smart,  compassionate nor punctual.  After he told me I could not make a doctor change, I fired him and moved on to Mount Sinai.  Currently, I go to Dr. Ratner who is not a carcinoid specialist but who works with Dr. Warner who is.  I am comfortable with Dr. Ratner, but not as comfortable with Dr. Warner.  Dr. Ratner is smart, compassionate and punctual but defers to Dr. Warner when I need to think about a different treatment plan or make an important decision.  Dr. Warner is recommending exploratory surgery to perhaps find my primary tumor and to reduce the tumor burden.  That’s all the information I can get on this potential procedure. He says I should go talk to a surgeon at Mt. Sinai if I want more detail on what the procedure will entail.  My opinion is that the doctor who is treating me should be able to at least outline what will occur during the surgery, explain why it needs to be done and when, as well as offer an explanation of other treatment alternatives and their pros/cons.  After 3 appointments with Dr. Warner, I do not feel comfortable with the proposed treatment plan because I can’t get enough clarity on what will happen to feel like an informed patient.  I have not found a good doctor-patient connection with Dr. Warner and have decided that I need to make a change for the following reasons:

1)   I believe it is important to have one doctor who I feel comfortable with managing my care.

2)   I really need my doctor to talk clearly about the options, how we would define success and what the risks are for each suggested treatment.

3)   After 2.5 years with diagnosed cancer, I am getting much more competent at understanding what my needs are.  I have developed biases in favor of doctors who are on their way to success and against those that have achieved success but forgotten how to be smart, articulate, compassionate and punctual.

Over the past several weeks, I have visited with two new carcinoid cancer doctors as part of my search for a more effective doctor-patient relationship.  Even though I have become pretty jaded on oncologists and cancer, I was pleasantly surprised with both doctors.  Both were smart, compassionate and articulate.  They explained all the issues with my case and spent time answering questions. 

After this 2.5 year struggle, I am glad to finally find some hope of achieving a good doctor-patient relationship.  I’m taking a well needed vacation and will report back on my medical situation after I return.

Bitter Pill and Gorillas in CT Scans - Unrelated Topics

There is an interesting article in the March 4, 2013 edition of Time magazine called " Bitter Pill - How outrageous pricing and egregious profits are destroying our health care" by Steve Brill.  This is a long and sometimes wonky article about many of the things that are messing up the US Healthcare system.  I'd highly recommend reading it - the link is on the Interesting Articles/Information section of this blog.  

In other interesting news, I just had another CT scan and on the report it says "The large bowel is normal in course and caliber.  The bladder and uterus appear normal."   The regenerative powers of the uterus are amazing!  I had a hysterectomy in 2010 and this is the first CT scan since then to find a normal uterus!  The radiology department might want to evaluate its peer review process.  This reminds me of the gorilla in the CT scan that 84% of radiologists could not find.  See link below.

http://www.cbsnews.com/8301-204_162-57568784/can-you-spot-the-gorilla-in-this-ct-scan-most-radiologists-couldnt/

The good news is that my carcinoid tumors have remained stable since diagnosis in August 2010.

Healthcare’s Trick Coin

In today’s "New York Times", there is an opinion column by Dr. Ben Goldacre, author of Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients.  (Disclosure:  I have not read the book and this editorial seems timed to correspond with his book tour) 

Dr. Goldacre writes about a Johnson & Johnson (J&J) artificial hip that had a 40% failure rate and now has generated over 10,000 lawsuits.  Various versions of this artificial hip had been sold both inside and outside the US since 2003.  In 2008, a senior consultant to J&J suggested that the device be redesigned and in 2010, the artificial hip was recalled.  We, the patients are only finding out about these issues now that the court cases are starting.

Dr. Goldcare states: “It would be nice to imagine that this kind of behavior is exceptional, but in reality, the entire evidence base for medicine has been undermined by a casual lack of transparency. Sometimes this is through a failure to report concerns raised by doctors and internal analyses, as was the case with J&J.  More commonly, it involves the suppression of clinical trial results, especially when they show a drug is no good.”

The doctor also writes that “this problem has been going on for decades and there are laws on the books such as The Food and Drug Administration Amendments Act of 2007 which is the most widely cited fix.  It required that new clinical trials conducted in the United States post summaries of their results at clinicaltrials.gov within a year of completion, or face a fine of $10,000 a day.  But in 2012, the British Medical Journal published the first open audit of the process, which found that four out of five trials covered by the legislation had ignored the reporting requirements. Amazingly, no fine has yet been levied.”

He goes on to outline other examples of issues similar to the J&J artificial hip. 

Dr Goldcare states,”if I toss a coin, but hide the result every time it comes up tails, it looks as if I always throw heads.  This cannot be acceptable.  Withholding data not only misleads doctors and patients; it’s an insult to the patients who have participated in clinical trials, believing that they were helping to improve medical knowledge”.

Unfortunately, this cynical patient doesn't t think that these problems will be fixed anytime soon. An example for us NETS would be the PROMID study that was supported by grants from Novartis, the maker of Sandostatin LAR, which found that the maximum recommended monthly dose of Sandostatin LAR (30 mg) given monthly increased the time to progression of tumors to 14.3 months versus 6 months for the placebo group.  This study, published in 2009, only had 85 patients in it.  Many doctors use the PROMID study to justify the use of Sandostatin LAR.  I’m wondering if there have been other studies done on this drug and suppressed either before or after 2009. I am and will always be concerned when the drug company sponsors a study that has the best results in patients using the highest dose of their drug.  In my opinion, it’s an enormous conflict of interest and should not be relied on as the basis for treatment without some independent studies or evidence.

Sandostatin LAR – Follow Up

Yesterday I had my monthly Sandostatin shot.  I mentioned to my doctor that I still had hematomas from the last two shots. He said that sometimes happens and I should not worry about it.  I’ve been going to this doctor for about 11 months now.  During the the first four months I had Nurse 1 who gave perfect sandostatin shots. For the next six months, I had Nurse 2 and three of the six shots gave me hematomas, including two shots in a row in November and December.  Today, much to my surprise, Nurse 1 was back!  I was so excited I almost hugged her.  She was perplexed that I was so happy – it was pretty funny – probably not her typical reaction when giving a shot.  I asked her if I could specifically request her in the future. She said that she usually works Wednesday and Friday.  Now I know when to schedule my shot appointments. Hopefully the hematoma problem is now solved.

New York Noids Carcinoid Support Group - Upcoming Luncheon

The above carcinoid support group will be getting together informally with fellow carcinoid patients and medical experts in the field.   We will share our experiences, observations, questions and concerns.  We will learn about recent developments of interest. Attending this discussion will be 3 doctors from Mount Sinai Medical Center as follow:

Dr. Richard Warner, carcinoid expert

Dr. Lynn Ratner, oncologist

Dr. Celia Divino, surgeon

Date:  Sunday January 27, 2013

Time:  12:30 pm

Location:  Carino restaurant, 1710 2^nd Avenue in Manhattan between 88^th and 89^th streets.  Menu can be seen by clicking the link below:

 http://www.menupages.com/restaurants/carino/menu

If you plan to attend, contact Emily Zuckerberg at ezuckerber@aol.com or call 917 689 1980.  Because of space limitations, attendance will be limited to 24 people. There will probably be a waiting list. Patients may invite one guest.  If you reserve and then find that you’re unable to make it, please contact Emily immediately so others can attend.  Please RSVP to Emily by January 20^th so she will have an idea of who/how many people will be attending.

A Happy and Healthy New Year to all and I hope to see some of the New York area patients/caregivers on January 27^th.

Sandostatin LAR – A Real Pain in the Ass

I’ve been taking monthly shots of Sandostatin LAR since January 2011.  That’s 23 times. Over the past 6 months, 3 of the shots have given me Sandostatin lumps, sometimes called hematomas.  By definition, a hematoma is a collection of blood outside of a blood vessel.  In reality it is a bump underneath the skin, it does not show up as a bruise but it feels like a marble under the skin. While it is not painful, it is annoying and bothersome, especially when I sleep on my back or sit in a hard backed chair.  I’m not sure exactly why I am getting the lumps. I suspect that the nurse currently working with me is doing something wrong.  

My first lump was after my July shot and it lasted about 3 months.  My doctor was on vacation when I went in for my August appointment. The substitute doctor said that a hematoma sometimes occurs and that it would probably go away.

Meanwhile, my November shot gave me a bump on the right side and my December shot gave me one on the left side so now I have two annoying/slightly painful bumps.  I have no confidence in this nurse’s ability to give these shots and I’m not sure if there is anyone else in the office that can give them.

I have heard from other patients that hematomas can be reduced by administering the drug slowly and warming it prior to injection.  The lumps could be from the shot being done subcutaneously (just under the skin) and not in the muscle tissue.  I’m not sure if these lumps mean the shot is not working as I have no symptoms.  Perhaps the nurse could get some instruction from Novartis, the maker of the drug.  I’ll bring this up with my doctor next month but I really don’t want to be the “guinea pig” for this nurse’s learning curve.

When I was being treated at Memorial Sloan Kettering Cancer Center (MSKCC), I had a bottom decile doctor but very good nurses.  I had 14 Sandostatin shots at MSKCC and never had a problem with residual pain or lumps.  Now I have a competent doctor but an incompetent nurse.  I’m not sure if there is such a thing as a happy medium where I can trust and communicate effectively with my doctor and get the Sandostatin LAR treatments without a hitch.

I am thinking about using a carcinoid specialist who is not located in the New York area. If I take that approach, I would need an oncologist, not necessarily a carcinoid specialist, who would treat me.  Unfortunately, I’m not sure how exactly to identify this local doctor and I’m concerned about how the shots might go, now that I am having a bad experience with a nurse. 

I don’t really consider myself a difficult patient but after my carcinoid experiences, I’m not sure.  I do expect my doctor to be punctual, articulate and clear about my treatment options. I also expect the nurses and other professionals involved in my care to be competent in administering medication and other treatments.  Is this too much to ask?  Do I need to lower my expectations and live with monthly Sandostatin lumps?

I’ve had the same doctors for over 15 years for dental, primary care and ob/gyn so it’s not like I hire and fire doctors often.  I’d be interested in hearing from anyone in the NYC area who has a great doctor and nurses or who is using a local doctor with a far away specialist.

Sanity Check

This week I went to my primary care physician (PCP) for a physical.  It’s been a while since I had one. I wanted to talk about my cancer situation more than I needed a physical.  I have been going to the same PCP for about 15 years and find him helpful, clear and articulate. 

I explained that I am having trouble finding a doctor who can clearly explain the treatment plans that might be appropriate for treating my disease and how they would affect my quality of life and survival.  Specifically, I am trying to reconcile having a major exploratory abdominal surgery with a watch and wait approach.

In my business, we sometimes use something called SWOT analysis to evaluate opportunities and help make decisions. SWOT stands for strengths, weaknesses, opportunities and threats. 

	Positive Factors	Negative Factors
Internal	Strengths	Weaknesses
External	Opportunities	Threats

In a business situation, looking at all these alternatives can help arrive at a good decision.  I am wondering if it is possible in some way to apply these factors or something similar when making a decision on how to treat my cancer.  Perhaps considering simple pros and cons of the different treatment options would be sufficient.

My PCP is a gastroenterologist and does not have any experience or expertise with neuroendocrine tumors.  He has seen some of my diagnostic test results but not all of my doctors are forwarding information to him.  I explained the following to him, most of which he knew:

At this point I have an unknown primary tumor (which may be in my small intestine or pancreas) and many metastases. Most of these are not in my liver.  Any exploratory surgery would not remove all the tumors but could reduce the tumor burden and might lower my serotonin/5HIAA levels.

The monthly Sandostatin shots have lowered my CgA levels from 25x range to 2x range. But my serotonin/5HIAA levels have not come down; they are still at 5-7 times the normal range.

I have no symptoms and feel excellent.  I used to have very occasional flushing prior to starting Sandostatin treatment.

I have yet to determine if the primary reason for an exploratory surgery is:

1) To remove tumors so I don’t have a bowel obstruction or

2) To lower my serotonin levels so I don’t develop fibrosis

3) Some combination of 1 and 2

 

Despite my high serotonin levels, and the fact that my tumors may have been there for 10-20+ years, I have no symptoms of fibrosis.  Symptoms of fibrosis include diarrhea and heart valve issues.  Not all carcinoid patients get fibrosis – I read an article that said it occurs in approximately 40% of patients¹.

My PCP thought that 40% was not necessarily a high enough percentage to justify an exploratory surgery if the objective was to avoid fibrosis.  If the number were more like 80%, it might be more obvious that I require surgery.  He thought that perhaps I might be in the 60% who might not get fibrosis because I’ve had the tumors for so long and don’t have any associated symptoms. 

My PCP stated that I should definitely shop around until I find a doctor/oncologist that I trust and can communicate with. Ultimately I have to make the decision on the treatment that is right for me. He also reminded me that medicine is not completely science and that there is a lot of judgment involved.  At this point I need more clarity and information before I proceed.  It was a helpful appointment and a good sanity check.

¹ The Oncologist 2008; 13:1264