bglass

To anyone worrying about survival statistics:

If you have patience for a 4-page read, below is a link to a famous essay by Stephen Jay Gould on what life expectancy numbers mean for cancer patients. Dr. Gould was a Harvard paleontologist who was diagnosed with mesothelioma in 1982. He looked it up in the library (this was before google and Wikipedia) and saw the median life expectancy was eight months. In his essay, Dr. Gould explains very eloquently the hope he saw in this number. He went on to live another 20 years.

http://people.umass.edu/biep540w/pdf/Stephen%20Jay%20Gould.pdf

Regards, Mary

Wim,

Welcome to the discussion board. It is good to hear your mother is feeling better. If you haven’t already found it, there is a great deal of good information on this website for newly diagnosed patients and their caregivers.

You ask the most difficult question, namely about prognosis. This is a very rare cancer and most doctors outside of the few true experts have not seen many pCCA patients – hence, they may not have experience with sufficient numbers of patients that could feed well-informed guidance on what to expect. There are research studies you can find on-line that look at survival, but most also suffer from small numbers and many look at subsets of patients who may not match your mother’s profile. Organizations such as the American Cancer Association publish historical data that likely understate survival since treatment today is better than in the past. So while you may look at some estimates of survival, they are not going to be precise plus they are averages of patients who are all over the map.

Many patients and caregivers have posted their histories on this discussion board. I found it most helpful to find and read cases similar to mine to get a sense of what to expect. Even then, you will see there is a broad range of experiences. For example, there are a good number of Stage III and IV patients who have done well and substantially exceeded what the data might suggest. So there is much reason for hope.

That said, this is a tough cancer and it is important to be well-informed. Ask a lot of questions with medical providers and push them to find you the answers you need. This cancer turns us into students and researchers.

This board is a great place to find information and comfort. Best wishes and prayers as you support your mother’s treatment and care.

Regards, Mary

Jonas,

It sounds from your description that Myrna is receiving good care. Prayers and best wishes that her progress continues.

Regards, Mary

This chain has brought up so many fundamental questions that cancer patients and their families and caregivers confront.

Let me add a patient perspective to the mix.

Marion is spot on that the patient’s wishes regarding whether to pursue aggressive treatment (or not) must be listened to. Caregivers and family members are heroic in their support to a loved one with cancer, but please listen hard for and take note of stated and unstated signals regarding treatment preferences. It is also important to insist that doctors give a straight story. Sometimes in an effort to maintain hope, potential negative scenarios are not fully discussed. I sometimes say to my doctors “tell me straight about risks or downsides” and once or twice I heard something different or new in response, information that has helped me make plans for a possible worse case which I hope won’t happen, but I want to be prepared.

The other observation speaking from my own experience is to look into hospice care early. This cancer takes unforeseen twists and turns and knowing as much as possible about all treatment options even the ones we don’t want to think about is important. There seems to be a fair degree of evidence that hospice can extend life in the end stages. It is a standard of care, not an act of giving up, that can help stabilize a patient, and enhance quality of life. In certain cases, patients might stabilize enough to resume treatment. This is not something I thought I would ever have to think about, but it is good to have this information as part of any research being undertaken, just in case the day comes when hospice becomes a consideration.

Jonas, Myrna is so lucky to have you helping her through these difficult times. I hope she regains her strength and well-being.

Regards, Mary

P.S. As a patient, I want to add a shout out for chemo. Yes it is harsh and difficult, and may not be an appropriate choice for some patients. But chemo has extended life for many CCA patients with side effects that while unpleasant, are tolerable. Some patients become operable after chemo treatment. It is true that other treatments are on the horizon that may someday be more effective and easier to tolerate. In the meantime, chemotherapy is an important tool, and it is helpful for patients to get correct, evidence-based info about their chemo options — information that can address any fears rather than incite more fear.

Hi Katherine,

It is great to hear you are doing so well.

You asked to hear about experiences with radiation. Here are some observations re my five weeks of IMRT radiation with capecitabine concurrently.

I need to preface this by saying that the center which treated me was wonderful in every way: efficient with caring, patient-oriented staff, top notch doctors and modern facilities. So my description below should not be viewed as in any way complaining about the provider.

I found radiation tougher than chemo. It is logistically different in nearly all aspects. Chemo was once a week with some weeks skipped. Radiation was every day. Chemo appointments were long, usually a couple of hours. Radiation was in and out within 30 minutes. Chemo was slow and nurturing: here is your recliner, have some tea, bring your family, do you want a magazine. Radiation was get down to business fast. Get in there, put on a robe, zapped and done.

The radiation made me tired but it sometimes felt like it was not the treatment, but rather getting myself there every day while I was holding down a job. For me, radiation treatment took some patience – I found the experience a little unnerving til I got used to it.

My treatment center had the patients change into gowns. I usually had one of the last appointments of the day, and the gowns left were either extra small or extra large. I opted for extra large, which made me feel I looked like the school nurse at Hogwarts.

The patients file in and out pretty fast as the treatments last maybe 10-15 minutes from start to finish. When you come in to the treatment room, you first lay on a table on a mold shaped to your body. The technicians move you around until the beams line up to the small tattoo dots that had been placed during the treatment planning session. Once you are in position, they leave the room, a large metal door clicks shut behind them, and they speak to you via speakers in the room.

Soft music played in the background. A large gantry with scanning and treatment functions rotates around you. It looks like a Star Wars weapon. The first step is a scan to be sure everything is lined up correctly, then the treatment itself which involves several passes by the rotating gantry.

In my case, I had to hold my breath during the treatments, which is something the technicians practiced with me until I could time my breathing as needed. I figured out some prayers that matched the timing of the breath holds, which made that aspect easier.

The technicians then tell you they are done, come back in, and help you off the table. At that point, you are finished, get redressed and head home. My abdomen felt warm after treatment and initially I would crave milkshakes and was hitting McDonalds on the way home.

Other than fatigue, which deepened over time and hung on for a few months after, I had a little bit of a reflux problem which responded well to over the counter treatment. No nausea. I generally felt fine during the treatment other than some hand-foot problems from the capecitabine. The radiation lowered my lymphocyte count quite a bit – if I recall correctly to a level considered an adverse event – but it bounced back to normal range within a few months. I was initially concerned about this, but the doctor pointed out that my lymphocytes had not stopped the cancer in the first place so their temporarily lower levels were not something to worry about.

The center where I was treated had a nutritionist on staff who recommended a high protein diet and plenty of water.

That is what I remember. The five weeks were tedious, but I got through it in good shape. It has been 13 months for me since I finished treatment, and I have no regrets.

Hope this is helpful.

Regards, Mary

Gail,

Please accept my condolences for your loss. You and your family will be in my prayers.

Mary

Thank you for letting us know about your mom, and please accept my prayers and condolences.

I recall reading her posts while searching topics on the board, and her story is one of great courage and spirit, as well as offering hope for other patients.

Regards, Mary

Jeff,

I looked at the article you attached, and want to make an observation.

The U.S. is a very large country, and there is need to be cautious when looking at stories that try to generalize from a small number of cases.

For example, there are about 1 million doctors in the U.S., and about 18 million health professionals of all sorts. The annual death rate for the U.S. population is about 0.8 percent, so in a given year, on very rough back-of-envelope average, about 8,000 doctors and 144,000 healthcare workers would pass away from all causes. If you divide this up by causes of death, then just for doctors, again with very rough averaging, there might be in the ballpark of 132 suicides, 101 gun deaths, and 419 accidental deaths in a year in the U.S. Widening this to more types of health professionals would expand the numbers even more.

It would then be very easy for someone to troll the internet and selectively find cases that fit ANY possible theory about circumstances of death for any group because there are always big numbers of cases to pick through.

Selectively picking a few cases that match a theory, however, is not proof of the theory’s correctness. Cancer is a terrible disease and it challenges people’s logic that a country that sent astronauts to the moon and figured out how to build an atomic bomb has not yet been able to solve the cancer puzzle, namely find a cure. My own belief is that cancer is just a much harder puzzle. Speaking for myself, this frustration is most intense when you are a patient or caregiver.

Regards, Mary