Second Opinion From UCLA August 5, 2004
Dr. Randy Heght Dear Doctor Heght, My wife and I request a “second opinion” consultation with you on the subject of her past treatment for esophagus cancer, and her current condition. Dr. Milana Dolezal referred me to you after, herself being referred to me by Dr. Mike Pangelinan, from UCMedical Group. Dr. Mike has met my wife, Bonnie J. Troescher and he has copies of almost all the medical record for Bonnie. He can be reached at 323-436-0303, Universal City Medical Group, 3536 Cahuenga Blvd., West, Suite 206, Los Angeles, CA 90068. I will pay privately for this consultation – in lieu of the slowness of our insurance coverage to authorize an acceptable second opinion. Bonnie J. Troescher has had many various treatments relating to cancer of the esophagus, her admission to Hospice Care and her continuing inability to swallow. Lakeside Medical Group provides the primary medical care under the larger coverage of Secure Horizon. Bonnie is 67 and has generally been in very excellent health all her life. Bonnie has received numerous delays and refusals by the insurance providers to provide service which is medically necessary, not experimental and the best course of treatment. In fact, the insurance authorities have even denied a valid “second opinion.” This is now an urgent matter and I am bypassing further attempts to obtain this service through our insurance coverage. This letter is written by me, husband of Bonnie. I hold the Advanced Directive, signed by Bonnie on June 16, 2004, for health matters for my wife. Background Situation: Bonnie was diagnosed with esophagus cancer in late February 2004. She had three CAT scans covering the beginning and end of a two month period – the CAT scans showed no change in size of the mass during this time and showed it at about 7 cm by 2 cm. A later PET scan showed no metastasis as did a laparoscopy. There was something called “local invasion.” There were other tests, some of which I have copies of the reports. Her conventional program included 28 radiation treatments, given over a 42 day period, during which she would be on 5FU 24/7 by infusion pump, 24x7, and two treatments of Taxol and Carboplatinol, one given at the beginning of all treatments and one at the end of three weeks. She had most of these treatments, but Memorial Day weekend was a rough week and when she saw the Oncologist the Tuesday after Memorial Day, he took her off the 5FU, and sent her to the hospital for a two-unit blood transfusion. She then refused to go back on the 5FU and the Oncologist wanted her to take “some” chemo, and proposed further treatment with Taxol and Carbplatinol. Bonnie never agreed to those further chemo treatments and eventually told the Oncologist she would never go back on any type of chemo – that she would prefer to allow the cancer to kill her. The radiation was interrupted by Bonnie’s hospital visits (three days, two visits) and an out-of-calibration machine. Ultimately, after 20 radiation treatments she refused to have any more – with the same story that she would rather die from cancer than have more radiation and die from that. Since the announced likely survival rate, before treatment, was less than 20%, and since there were interrupted treatments Bonnie’s thinking on this was that chemo and radiation didn’t offer much hope at the start and refusing more after interruptions would not change things very much. She also felt that the pain and physical deterioration caused by chemo and radiation were worse than death. Her last hope was surgery. At the beginning of this process the surgeon told us that he might be able to do a “clean resection” after chemo and radiation – the Oncologist said “we are looking for a 50% shrinkage of the cancer after radiation and chemotherapy.” He indicated that it would then be up to the surgeon as to whether or not Bonnie would be a good candidate for surgery. The Oncologist reported that the last CAT scan, done about three weeks after the last radiation treatment, showed “at least a 30% shrinkage.” (A more accurate measure was not possible because the before and after CAT scans were done on different machines. There could well have been the “at least 50% shrinkage” described by the Oncologist as a good indicator for then doing surgery.) One opinion we seek is on the prognosis given by the surgeon: The surgeon told Bonnie that she was “not a candidate for surgery,” that if he did do it it would be an 11 hour operation with 30 days in ICU and a 5% chance of survival, and that it was not up to him, but up to the Oncologist. At the time Bonnie felt this was worse than a death sentence and asked the Oncologist for recommendation for admission to the Hospice Program. He denied that service, encouraged Bonnie to continue with more chemo therapy and when she absolutely refused those further treatments, he wrote an official letter, dated June 24, 2004, dismissing her as a patient and indicating that he had referred her for psychological counseling. The Primary Care Physician agreed with Bonnie’s assessment of the situation and recommended her for entrance to the Hospice Program. The second physician, at the Hospice also agreed and she entered the Hospice program in June 2004. The radiation doctor at the beginning of treatment told us that radiation would eventually cause her to not be able to swallow; but that two weeks after radiation stopped she would begin to swallow and three weeks after she would be able to eat. That turned out to not be true. He never mentioned “scar tissue” and my research suggests this is one possible explanation for the swallowing problem. Well over 6 weeks after the last radiation, about 5 weeks after the last chemo, Bonnie was not able to swallow her own saliva, much less drink water or eat. She has been on a feeding J tube for food and water since about two weeks after radiation started. She is still dependent on this J Tube as of this writing. The inability to swallow was such a debilitating problem that Bonnie was again willing to die rather than suffer more time in this condition. From our own observation and extensive research it seemed very likely that the swallowing problem was NOT directly caused by cancer, but more likely by the radiation and possibly by scar tissue caused by radiation. It could also be caused by the continuing existence of a “dead cancer mass,” but she had no trouble swallowing when the cancer mass was much larger, before the radiation. It appeared to us, and initially to the Hospice staff, that palliative care should cover treatments that would relieve the swallowing problem. Bonnie then, and now, is not interested in any further chemo or radiation directly intended to “cure” or remove the cancer. We believe that our spiritual faith may have caused a change in that area, but are not asking for any acknowledgment of that cause of change. In addition to that faith we have been using a variety of “alternative remedies” which we would be glad to describe. However, the palliative care we sought was denied by the Hospice people who said that Bonnie should, rather, leave the Hospice program and go back under the regular insurance coverage – which she did. This “denial” was presented to us as if it were a “good thing,” that we would get more and better care by leaving the Hospice Program and returning to conventional insurance coverage. I have done enough research on the web to understand some terms and possibilities, and offer the following suggestions as a layman, certainly not as a health professional. v Bonnie has moved out of the Hospice to her standard Secure Horizons, Lakeside Medical Group, and insurance coverage. v Within that coverage Bonnie got the authorization for a “swallow test” using an X-Ray and barium. That test was done on July 16, 2004, and showed a mass and a narrowing of the esophagus. Bonnie was able to swallow some of the Barium and has since improved in her swallowing so that on some days she can swallow soup, water, but no food. The swallowing seems to change from day to day, being good enough for soup some days, and other days not even her spit. v Because of the good news about (1) no increase in size of cancer before treatment, (2) no metastasis, and (3) at least 30% shrinkage, it seem unlikely that this blockage is caused by live or growing cancer. v It could well be caused by scar tissue – since I find that radiation is often reported as causing scar tissue – and the radiation was exactly on the esophagus area. v However, it would be dangerous, in my opinion, to do any further investigation that might aggravate live cancer, if it exists in the area where it had been, so I would think a PET scan would be necessary to reveal if the obstructive material is cancerous or not. I understand, for instance, that a PET scan can differentiate between scar tissue and cancer. v If there is no danger of aggravating any existing cancer mass, then an endoscopy may well be the right further palliative treatment, using any of the usual mechanical means of enlarging the esophagus for either a permanent or a temporary enlargement, and allowing swallowing. v There may also be a possibility of laparoscopy for which the purpose could be to remove any non-cancerous material and to remove scar tissue – but we would want an informed opinion that more scar tissue could be removed by laparoscopy than might be created by the procedure. v There may even be a possibility of the more traditional surgery to accomplish a clean resection – but the former surgeon is not an acceptable surgeon for that procedure. If this is medically indicated, we would like your suggested referral on this. v I feel it is standard, and in our case necessary, to get a second opinion on any or all of this. I originally hoped that the insurance would cover that second opinion at UCLA. Since the insurance coverage has not approved this second opinion I am writing this letter and requesting a private consultation with you.
In addition to the above personal opinion on what might be needed, I would like to present the following symptoms and prognosis. v We differentiate between “swallowing” as a general action, and “spitting,” “gagging,” “vomiting,” “spitting or coughing up very thick phlegm,” and “dry mouth.” v During the last two weeks there have been times when Bonnie could swallow water, even as many as 15 tablespoons of soup, with no difficulty. The barium X-Ray test showed that she could swallow, with a straw, rather large amounts of the barium water. v There have been other days when she cannot even swallow her own spit. These conditions have gone back and forth – it has not been a constant change in the same direction. v As best we can observe she has a “normal moist mouth” at times, and at those times can usually swallow water and soup. v Other times her mouth is very dry and she is not able to swallow. v Even when she gags, or coughs up thick spit, almost immediately after the mouth is again dry, and she cannot swallow. v During some of the more violent gaggings her breathing gets rapid as does her heart rate, but these currently return to normal very quickly after she stops gagging. During the traditional treatments she had several tests of her heart – finding no problems. v She is on the J Tube with either water (mixed with germanium) or a medical food most of the day – getting about 1750 calories per day from the feeding. v In between tube feeding I give her manual two-ounce “pushes” which contain the various herbs and remedies we are using – and which usually seem to cause an instant change to a dry mouth. I am familiar with data that describes how hormonal signals can “turn water/blood” on or off in various parts of the body when the body’s needs for water change. I assume that the push of very active herbal items into the upper intestine causes an immediate call for water/blood to flow into that area – enough to draw saliva immediately away from the mouth. I assume further that this would cause swallowing difficulty, but could be a beneficial sign of increasing immune system action and reducing the mass of dead cancer. v Her weight is remaining fairly constant at about 118, up from her low of 112, and down from a pre-cancer weight of 151. She thinks of 125 as an ideal weight. v She is in very good spirits, even through the gagging and related problems, mostly because she and I have found a “good explanation” for the continued swallowing problem. v The mass of the cancer, originally, was about 7 cm by 2 cm, and has apparently shrunk “at least 30%.” Even if it has shrunk by 50%, there would probably still be a large mass, whether live cancer or not, still adjacent to the esophagus. The barium X-Ray showed such a mass. v I have asked several doctors about “where does this mass go?” when it shrinks – the answers have not been very helpful to my understanding. My understanding is that most such shrinkage would be caused by macrophage activity, and that some “dead macrophages” could well be expelled from the body in the form of phlegm, accounting for the very “thick spit” that she often spits up, or coughs up. v Only a few times, about four weeks ago, she tasted bile in her mouth and we figured this was a good sign because it meant there was an opening from the stomach up to the mouth and the absence of any food in the stomach must mean that the toxic reaction that causes a vomiting reaction (with bile) would be caused by residual toxins from chemo or dead cancer mass in or near the stomach. She continues to gag, but has not tasted any bile in these last four weeks. v She also seems to “burp” within seconds of receiving a push. v If this understanding is valid, then the spitting and gagging could well be very good signs that the immune system (with our alternative remedies in assistance) is doing its job in reducing the dead cancer mass. v We are ready to continue using our alternative remedies, on our own advice, but we feel that surgery, or a balloon or stent enlargement by endoscopy might be safe and medically appropriate. Bonnie is willing to have either of these – I don’t see how either could be done without a PET scan first – to determine if it is safe. v We would also very much like to have a confirmation of our hope that there is virtually no more live cancer mass, presumably by PET scan. I believe that if the PET scan shows no cancer, the usual oncologist advice would be, nonetheless, to resume some form of chemo and/or radiation. At this point Bonnie is very likely to refuse that path of treatment in favor of what we are doing with the alternative remedies, or even being readmitted to the Hospice program for that end.
We look forward to meeting with you and getting your opinions and advice on these matters.
Sincerely, Loren C. Troescher
This web site is a breath of fresh air in a world of pollution.
|
This web site is Copyright © 2004 by Karl Loren. Permission is granted to download, copy, distribute and use as long as the copyright notice remains attached to such use and the intended meaning is not altered.
