Struggling with my MD's style

pendesk8,

I know you may feel you have been wronged at some point, but saying something like, "Drs think its up to them when we leave here ,guess what ,it's not." is both unfair, inaccurate and not reflective of the facts of their long education, training and dedication to you, their patient.

You deserve better! Statistics be darned! While docs have the responsibility to be honest and pragmatic, they don't have a crystal ball. There are exceptions to forecasts and miracles too! I'm convinced positive thinking has a huge impact on the body, and there is growing research to support that. Even if the doc is right, you have the right and need to lead your life to the fullest . Be an exception! You can do it! I had stage 4 diagnosed 20 months ago and am doing great! If you live anywhere near Charlotte I would be happy to share my care contact info.

When I was diagnosed in 2012, my surgeon never directly told me what stage I was….only that I was eligible for the Whipple. When the head of oncology took over my case, he never mentioned I progressed to stage IV nor did he discuss longevity. Years later I thanked him and the team for never telling me how serious my situation was. At 4.5 years after finishing aggressive chemotherapy of 24 months that included 24 cycles of Folfirinox and 22 cycles of 5-FU/Leucovorin that alternated every six cycles, I got the nerve up to ask what he estimated my lifespan was when he took on my care. He said most with my diagnosis would be 6-8 months but had given me 12 months because I was very physically fit at time of diagnosis and remained so after the Whipple despite the physical challenges. So far he has been off 10 years and I will be celebrating the 11th anniversary of the Whipple procedure on June 18th. I thanked him for never volunteering that prognosis as it would have caused undue anxiety.

Had my oncologist had a pessimistic attitude regarding my treatment, I would not have hesitated to change oncologists and that would likely have resulted in going to another NCI Center of Excellence in Cancer Treatment with a pancreas program. I was already doing a 4’20” commute by train and subway for twice month treatments with Folfirinox so switching to another institution for an experienced oncologist with a better attitude was not an issue. I would go wherever I could get the care I was comfortable with and met my requirements.

Regarding being given an expiration date, that is something that can be difficult to predict with latest advances in chemotherapy and radiotherapy treatments and clinical trials using targeted therapy, immunotherapy as well as small molecule drugs as the third type of trial category. I often refer cancer patients to read a very eloquent essay written in the early 1980’s by Harvard University Computational Biologist Dr. Stephen Jay Gould when he was battling his first cancer. He clearly explains in lay person language about cancer statistics and how they apply to no single patient. The title of the essay is “The Median isn’t the Message” and is an easy read.
https://people.umass.edu/biep540w/pdf/Stephen%20Jay%20Gould.pdf

Thank you for posting that essay! I enjoyed reading it. And it makes some important points about statistics and prognostication based on them. I'm assembling some comments and questions for my oncologist for our next meeting on Monday 6/19. We'll have CT and blood work results then, so lots to talk about--including his approach to my case.

@stageivsurvivor , THANK YOU for posting that link to Gould's paper. It's a goldmine full of insights readable in a few minutes, echoing my thoughts much more concisely and eloquently than I've ever been able to.

@ all, For what it's worth, Gould was diagnosed with peritoneal mesothelioma in 1982, wrote that paper in 1985, and lived until 2002 when he died from a different cancer completely unrelated to his mesothelioma. ( https://en.wikipedia.org/wiki/Stephen_Jay_Gould )

My 85-year old father, who has far more comorbidities than Gould had, has now also exceeded the median expected survival with his pleural mesothelioma.

The median survival for all cancers will keep moving to the right as diagnoses are made earlier (although that itself somewhat biases the outcome) as long as care is accessible to enough people. The development of Herceptin for the treatment of breast cancer was almost cancelled over its questionable early performance, but it took off after scientists were able to direct it to the sub-population of patients with the right gene mutations.

We're in a golden age of genetic profiling and appropriate, patient-specific targeting of treatments. Unfortunately we're not as far ahead yet in treating PC as we are other cancers, but making good progress. Also unfortunately, not all patients are getting up-to-date care from PC specialists. It's important to maintain the good attitude, fight the good fight, and be very diligent and proactive about seeking out relevant clinical trials.

I'm still not feeling any effects from my cancer (2 years after initial diagnosis, 1 year after Whipple, 8 months after recurrence); all I feel is the temporary fatigue from my treatment, which is still a basic chemo cocktail (not yet on any specialized trials). I'm also on the unexpected side of the statistics, responding better to the GCA combo than to Folfirinox.

Stay strong and stay hopeful!!!

I’m 19 months out from stage IV diagnosis and have decided it’s just a label. They have to call it something for so many reasons..incl.insurance!!!
Every day we get is a day closer to answers for each of us individually.
I am going to John’s Hopkins for a second oncology opinion to get insight to anything I can do that is proactive instead of reactive! We must be our own advocates. The cancer docs are immersed in a busy busy world.

I appreciate your honest vent! Actually, I have recently had the opposite from a GI doc after learning I have a pancreatic IPMN. He was completely dismissive and literally told me I have “nothing to worry about, it’s not cancer” and “if it were cancer it would not be that small.” My IPMN is 1 cm. I am a nurse and I asked him how he could possibly know it’s not cancer without pathology?? He can say that it may be unlikely to be cancer at 1 cm but that is not the same thing. I feel that his comments were irresponsible and demeaning. And I have seen comments and posts on here from people with IPMN’s < 2 cm that were found to be malignant upon pathology so he is also inaccurate. He also showed a lack of support or respect for my choice in my own plan of care by trying to shame me for wanting to do surveillance or any further testing. He even said that he “does not immediately know if any GI specialist who would do further investigation and that to do so would risk over-treatment and be medically inappropriate.” He is way, way out of line. I am still going to seek a second opinion and learn more about my IPMN. And when I feel I have all the information I need I will make an educated decision regarding how I intend to move forward.

My Dr has no dedication to me whatsoever.I'm just a dollar sign.I see her 5 mins every month.She has never helped me with this fight at all.I've been going it on my own.I firmly believe that God has the say of when we leave here,not other people.I had terminal stage 4 cancer 25 years ago.The cheif of staff at Johns Hopkins told me I had a miracle and thats what I believe.Believe what you want.

Went to Maryland yesterday with great results.I am accepted in the trial as long as they can get a needle biopsy.The trial is the new antiobiotics thats been killing cancer.It will be a pill in the morning and one in evening.The trial starts at the end of june and I have to do a 4 week wash out.so next step will be a needle biopsy and I'll be good to go.Anxious and ready to start.

@pendesk8 , congrats on your hopeful news! Do you have the name, NCT number, or drug description for that trial? Was it also dependent on your specific mutation? (I don't recall clearly, but did you have ATM?)