William G. Bartholome, MD, MTS

ACOR EC-Group Posts: September, 1998

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Date: Tue, 1 Sep 1998 10:11:13
Subject: Reply Jennifer re PDT; Pam re Chuck and Barrett's - Bartholome

Jennifer,

The concern you raise is best characterized as a "theoretical" concern re PDT. Any treatment of a pre-cancerous process that destroys the cells involved in the process raises a similar question. Did the procedure destroy ALL the abnormal cells or just those cells on the surface/the most superficial layer of cells. Could there be other cells that were "hiding" from the treatment? PDT for people with Barrett's without any evidence of abnormal cells (no dysplasia or metaplasia) hasn't been around long enough for us to know whether or not this theoretical objection has any basis in reality. PDT for people with Barrett's that is already showing evidence of dysplasis or metaplasia (early or pre-cancerous changes) is also so new that this theoretical concern can't be proven or disproven at this point in time. What is needed are three to five year follow-up studies on each population of persons. So far, there appears to be little basis in reality for this concern, esp. in people who have Barrett's without pre-cancerous changes. However, what are the alternatives? If the alternative that one is looking at is complete removal of the segment of the esophagus with the Barrett's and pre-cancerous changes, one needs to balance the very real risks and burdens associated with removal of the esophagus against the theoretical risks involved in PDT. There is no black and white here. Lots of factors to be weighed. Strongly support the idea of your getting a second opinion re PDT from one of the centers that has a lot of experience with this procedure.

Pam,

Chuck had the "gold standard" treatment for Barrett's, i.e. removal of that portion of the esophagus that had undergone the changes described by the name Barrett's. I assume that he has no evidence of Barrett's at this time. That said, his risk of developing adenocarcinoma of the esophagus should be very nearly the same as anyone in the general population, i.e. very low. If the pre-cancerous process is removed, the risk of cancer developing should be very, very low.

In Japan and places in China, removal of Barrett's esophagus is now being done very commonly. This is called prophylactic surgery. Removing the esophagus before cancer has a chance to develop. In this country, we are now experimenting with PDT to determine if it is effective as a prophylactic treatment, i.e. eliminates the Barrett's and the risk of cancer. 
bill bartholome

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Date: Wed, 2 Sep 1998 10:27:35
Subject: Reply to Marc; Nancy; Ronald - Bartholome

Marc's posting on "two paths" is right on target. I think what I recurrently feel a "need to do" is to remind people that there is "another path," i.e. comprehensive supportive care. And, that we have good info on what happens to people who chose that path. And, that we know that many who chose this path have a quality of life and a length of life that is comparable to those who chose aggressive/experimental anti-cancer treatment in the face of extensive or progressive EC. I also agree that what often makes the difference between which of these "paths" is "right" for a person are factors that have little to do with the disease itself but rather with highly personal/individual considerations. Every "medical decision" is also an intensely "human" or "personal" decision.

Nancy re "need" for surgery: I think you would have a hard time finding any physician who would tell you that you "didn't need surgery." I think they would argue that we don't have enough evidence to support only chemotherapy and radiation therapy as "curative" treatments. Yes, there are long-term, disease-free survivors who had only Chemo and radiation. But, in almost all of these cases surgery was not performed because it would have been too risky. Yes, your weight does increase your surgical risks and risks of post-operative complications. Assuming you are otherwise in good health, I don't think most docs would see that increased risk as high enough to justify your taking the risk of not having surgery.

Ronald re dilations:

The dilation procedure is only effective in increasing the diameter of the esophagus if performed during the period of time the scar that is forming at the junction of the stomach and what's left of the esophagus is "maturing." This period varies, but is usually in the first four to six months following surgery. During each dilation procedure, the GI doc should be inflating a balloon to stretch the scar as much as possible. If the GI doc is no longer able to stretch the scar, the procedure won't do much good. Ask your doc what's going on with the scar. Ask if the diameter of the esophagus at the site of the scar is bigger after the dilation procedure or not. I was always able to feel a slight difference in how easily food went down...how often the food would "hang up" and need to be forced down with a small swallow of fluid.

bill bartholome

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Date: Thu, 3 Sep 1998 13:49:32
Subject: Reply to Patti and Catherine; EC in China - Bartholome

Catherine

I was concerned with the statement in your post re Ed "Never in a million years would I have been able to put him in Hospice, or have someone else take care of him..." Well over 90% of hospice care in the US is care provided primarily by family caregivers, volunteers and a professional "consulting" team of hospice professionals IN THE PATIENTS HOME. In fact, what is very clear to me from your description of what Ed got during his final weeks is that he got wonderful "palliative" or "hospice" care. Consulting with hospice professionals may have helped some; and, a primary focus of hospice care is on providing care and support to the caregivers. YOU may have gotten a little more support and care yourself had hospice been involved in Ed's dying.

Patti's post contains the statement: "...among us there is a man named Bill who sent a powerful message that could take away that hope (he has not seen any dramatic changes in outcomes of treatment in patients who have Stage III and Stage IV); (those with progressive disease should seek palliative care unless we want to be a research subject.)."

Let's be clear about what Bill is saying about progressive disease. If a person has had the "standard" highly aggressive "triple approach" to adenocarcinoma of the esophagus, i.e. chemotherapy + radiation therapy; plus surgery; plus post-operative chemotherapy (persons with Stage III and IV would likely have post-op Chemo] AND IN SPITE OF THAT TREATMENT develops recurrent or progressive disease... then, that man named Bill recommends that they see themselves as faced with the two paths that Marc so well described. One path is comprehensive supportive care...in most cases that would mean "palliative care" (no anti-cancer attempts) coordinated by a team of hospice providers. The other path is non-standard chemotherapy...in most cases that would mean being treated on a Phase I or Phase II cancer chemotherapy protocol, i.e. becoming a research subject. In an earlier post, I pointed out that people entering Phase I and Phase II cancer chemotherapy protocols should see themselves as primarily acting to help other people...see themselves as volunteers motivated primarily by a concern for other folks with EC in the future. Why? Because the vast majority (at least 80%) of people with recurrent or progressive EC who become research subjects do not experience direct benefit from such treatment..their disease does not "respond" or "stabilize" while taking the experimental chemotherapy. I am very GLAD that Mike is a "responder" and I hope that he continues to "respond" to Chemo for a long time. I would hope that had he not responded, you and Mike would have at least considered the option of comprehensive supportive care...even if you ultimately decided to try another experimental drug.

Patti goes on to compare what I said in my post to some very callous and cruel behavior of a doctor she and Mike encountered. I'm sorry if my beliefs and opinions are being read as "cruel" or "crude." I understand that some of you feel that this group should exist primarily to support those people with EC who are pursuing an all-out, no-holds-barred fight against a "beast"...people who pursue anti-cancer treatment until the very last days of their lives. I feel strongly that this is NOT the only voices that should be heard. I have tried my best to be sensitive to the fact that this group includes a wide range of people who are in various stages of living with this disease. I have also tried my best to be sensitive to the fact that this group also includes a wide variety of people who are in various stages of struggling and, yes, dying with this disease.

EC in China: It is my understanding that the Chinese are experimenting with a wide variety of approaches to this disease (which in some areas of China is 10 to 15 times more common than in the US). In some cities, EC is so common that the Chinese are experimenting with methods of screening people for this disease (much like women are screened for cervical cancer with Pap smears in the US). One of these techniques involves having patients swallow a balloon that has a rough surface. The balloon is inflated...moved up and down against the esophagus...deflated and removed. Cells are then scraped and washed from the outside of the balloon and studied under a microscope much like a Pap test would be done. The disease is not common enough in most areas of China to justify this approach...and it is not at all common enough in the US to justify the approach.

bill bartholome

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Date: Tue, 8 Sep 1998 09:25:30
Subject: Repy: Diane and Roxanne - Bartholome

Diane is absolutely right on the question of access to medical records. The law is now very clear. Accrediting bodies such as the JCAHO (hospitals) and NCQA (managed care entities) also require that patients/members be informed of their right of access to records. In fact, many "progressive" health care providing organizations provide both access and assistance in interpretation of the records (often written in "medspeak.") Mention of the law, a la Diane's approach, or mention of "my attorney" usually gets the provider's attention.

Roxanne asks about muscle/joint pain with Taxol. It is my understanding that this is thought to be an inflammatory joint response to the drug (often called a "serum sickness" reaction after the response humans often have to being given serum derived from animals). Usually there is pain, often also swelling and "heat" in the joint. Should respond to anti-inflammatory drugs like Advil. Make sure you are using an adequate dose of ibuprofen. Would use at least 600-800 mg every 6-8 hrs. If no or inadequate response, would request that your doc consult with either pain management professionals or rhematology docs. There are lots of other drugs that could be used. There are at least 25 different anti-inflammatory drugs.

Group: Thanks for supportive statements re my "voice." Also, please bear in mind that I am not a "cancer expert." I am first and foremost a patient who came looking to this group as my "support group." I am also a pediatrician and a "clinical ethicist" (that's just a fancy new name for a person who is trying to "teach" and "do" philosophy at a medical school/medical center.) What I know about esophageal cancer I learned from the "experts" in this group.

bill bartholome

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Date: Wed, 9 Sep 1998 09:28:41
Subject: Re: cryosurgery and liver mets

Marilyn recommends Jim look into the possibility of cryosurgery for metastatic growths in the liver (vs. standard surgery]. Think it important to remember that most cancer docs/surgeons see EITHER approach as potentially part of the "palliative" management of metastatic esophageal cancer, i.e. these tumors are removed (where possible) or treated with cryosurgery (which does involve at least laproscopic surgery) when the tumors are causing severe symptoms, esp. pain that is difficult to control. Since removing tumors from the liver is often technically very difficult, many centers are experimenting with the use of cryosurgery which involves the use of a probe that is placed into the tumor and used to attempt to kill most of the cancer cells by freezing them. This philosophy of care is the same as that which informs the use of radiation therapy to control symptoms of metastatic growths in bone; or the use of an esophageal stint when tumor growth threatens to obstruct the esophagus. These procedures are not undertaken as part of an effort to cure the disease but rather to control the impact of the disease on the person's life. Therefore, these procedures should be considered only when symptoms of the cancer cannot be controlled with medications or less invasive interventions.

bill bartholome

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Date: Sun, 13 Sep 1998 13:54:59
Subject: Reply--Nancy Trail re "starving"

Nancy,

Your concern is a common one amongst family members of people who are dying. Talk to your dad about it. He will reassure you that he is not having feelings of "starvation." You should also talk with the palliative/hospice care providers about your concerns. They will share with you that a gradual withdrawal from food and fluids is a very natural, very normal part of dying. In fact, forcing food and fluid on the dying usually results in them feeling guilty about not be able to please those anxious to get them to eat; and, when they do eat, they feel worse, esp. when they have tumor involving their livers, particularly when they also have ascites (fluid in the belly.) Not having a bowel movement for a week may be very normal. The nurses can tell you whether or not he is having any significant degree of constipation or discomfort related to his bowel movements.

You should also not worry so much about the fact that you have a life to lead. Yes, in an ideal world, you could spend every minute of the time he has left by his side. But, he doesn't expect that (and he may not want it). Let him know that you "feel" like you don't want to be away from his side. Remember that a gradual withdrawal from the world is also a natural, very normal part of dying. Many dying people spend more and more of their time in respectful solitude. Just keep asking him what he wants/needs and respect those as best you can. Try to focus your concerns on his "spirit" rather than his body or bodily functions.

Hang in there.

Peace,
bill bartholome

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Date: Tue, 15 Sep 1998 09:40:08
Subject: Reply to Marc re number of radiation treatments

Marc,

Radiaiton is used in the treatment of cancer in a wide variety of ways. The treatment you describe is one in which the radiation is being used as a palliative intervention, i.e. a short series of radiation treatments given in an attempt to decrease the symptoms a person has related to cancerous growths. The radiation is not be given in an attempt to "cure" the person of cancer. Many others on this list have been given radiation treatments as part of a "curative" treatment, i.e. a long series of radiation treatments given in an effort to kill all the cancerous cells remaining in a particular part of the body.

bill bartholome

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Date: Wed, 16 Sep 1998 10:09:05
Subject: Reply - Erin and Peyton & Elaine - Bartholome

Erin,

The situation that you describe is NOTnormal. Someone, hopefully some health care provider involved in your Dad's care needs to sit down with him and your mom and re-evaluate his entire care plan. I would hazzard a guess that he is dealing with severe dumping syndrome from his tube feeding (that he is not digesting and absorbing the tube feeding mixture, i.e. that it is actually to use your words "going right through him.). If he were actually digesting and absorbing the 1500 calories you claim he is being given every night, he would have stable to increasing weight even if he didn't eat another thing during the day. This may require a change of the nature of the enteral feeding product or a reduction in the rate at which it is being given or another approach altogether. You did not descirbe what medications he was taking. His sleeping all the time is likely the result of inappropriate doses of drugs that are sedating him. There is also the possibility that he is sleeping excessively because he is depressed. Would push for a complete re-evaluation of his entire treatment plan - feedings, oral intake, medications, psychological evaluation, etc.

Peyton & Elaine, In your post you did not remind us of the age of your mom or the extent of her health other than the cancer. These factors may make a big difference in terms of her ability to tolerate the surgery and any benefits she might derive from surgery.

The complications you describe are unfortunate, but not uncommon. The need for blood product support and the bleeding problems should resolve within a week or two. The concern will be whether or not the kidney damage is permanent and what this problem will mean in terms of her life. If the damage is severe enough that she would require long-term kidney dialysis, this would have a major impact on her life and any decisions that might need to be made regarding her cancer.

Assuming that all complications of her chemo and radiation resolve, the decision re surgery should probably hinge on the question of to what extent the surgery might be part of palliative approach to her disease. This will depend largely on the extent of residual disease following her chemo and radiation. If there is little or no evidence of residual cancer on CTscans, endoscopy + biopsy and other evaluations to determine her response to chemo and radiation, it may be that surgery is not a necessary aspect of her care in terms of length of life and quality of life. On the other hand, if there is evidence of extensive residual involvement with cancer on these evaluations, surgery would only be a consideration if necessary to help her cope with symptoms related to obstruction of her esophagus.

Don't think you have all the data you need at this point in time to make a decision re surgery. One of the most important "lessons" of dealing with a cancer diagnosis and the multiple interventions undertaken to treat it is take things one step at a time, make the decisions that need to be made when they need to be made. There are too many confounding factors to make decisions in advance.

Re guilt feelings. Don't worry there will be lots of opportunities for you to experience guilt feelings regardless of what choices she ends up making! (Joke)

bill bartholome

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William G. Bartholome, MD, MTS | Back to Top
1998 ACOR EC-Group Posts: Mar | Apr | May | Jun | Jul | Aug | Sep
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