Dear Friends,
In an effort to support Earl and Sandy as he begins treatment this next week and baby day draws near...we have established a "care calendar" link called "Horton's Helpers."
As things are needed; meals, help at home, babysitting for boys, etc....we'll update the calendar! If you are able to help in their time of need it would be greatly appreciated!
The Care Calendar Link is http://www.carecalendar.org/index.php
Thank you so much!
Jennifer and Andy Kelly
Saturday, February 28, 2009
Thursday, February 26, 2009
Gotta stay flexible
Looks like the plan has changed a little . . .
Turns out, the 5-FU chemotherapy drug is actually given as a continuous 24-hour drip. That means that E. can either be hospitalized for five days for in-patient treatment.... or that E. can use home health services for out-patient treatment. Since E. would obviously be more comfortable at home, that's what we are planning. (Hospitalization is sometimes required, especially when the doctor feels like kidney functioning and fluid intake needs to be strictly regulated. Since E.'s diabetes does raise some red flags in that regards, he will have to be closely monitored.)
E. underwent another CT today to plan his radiation treatment. They marked both sides of his chest, as well as the middle area between his rib cage, with permanent marker X's. The X's were then covered with medical tape so that they would not be washed off before Monday, when E. is scheduled to be "tattooed" with the dots to specifically direct the radiation.
E. has another procedure scheduled next Tuesday to have a PICC (Peripherally Inserted Central Catheter) inserted. A PICC is a semi-permanent form of intravenous access that can be used for a prolonged period of time. This will allow E. to get IV treatments, antibiotics, or fluids without being repeatedly stuck with needles. It can also be used to draw blood.
And, after some major confusion about scheduling, it appears as if we finally have E.'s first day of treatment set. Like we said before, Wednesday, March 4th is the big Day#1 of treatment. He will meet with his oncologist first, then receive his IV Cisplatin (which we are now told takes about 3 hours), then receive his IV pump for the 5-FU (supposedly in the form of a fanny pack contraption), and finally receive radiation. It will undoubtedly be a long and tiring day for him.
Please think nothing but good thoughts for him.
S.
Turns out, the 5-FU chemotherapy drug is actually given as a continuous 24-hour drip. That means that E. can either be hospitalized for five days for in-patient treatment.... or that E. can use home health services for out-patient treatment. Since E. would obviously be more comfortable at home, that's what we are planning. (Hospitalization is sometimes required, especially when the doctor feels like kidney functioning and fluid intake needs to be strictly regulated. Since E.'s diabetes does raise some red flags in that regards, he will have to be closely monitored.)
E. underwent another CT today to plan his radiation treatment. They marked both sides of his chest, as well as the middle area between his rib cage, with permanent marker X's. The X's were then covered with medical tape so that they would not be washed off before Monday, when E. is scheduled to be "tattooed" with the dots to specifically direct the radiation.
E. has another procedure scheduled next Tuesday to have a PICC (Peripherally Inserted Central Catheter) inserted. A PICC is a semi-permanent form of intravenous access that can be used for a prolonged period of time. This will allow E. to get IV treatments, antibiotics, or fluids without being repeatedly stuck with needles. It can also be used to draw blood.
And, after some major confusion about scheduling, it appears as if we finally have E.'s first day of treatment set. Like we said before, Wednesday, March 4th is the big Day#1 of treatment. He will meet with his oncologist first, then receive his IV Cisplatin (which we are now told takes about 3 hours), then receive his IV pump for the 5-FU (supposedly in the form of a fanny pack contraption), and finally receive radiation. It will undoubtedly be a long and tiring day for him.
Please think nothing but good thoughts for him.
S.
Monday, February 23, 2009
Chemotherapy Oncologist
We met with Dr. B., the chemotherapy oncologist, this afternoon.
He agreed with Dr. L. that a combination of chemotherapy and radiation was the best course of action for E.'s situation. According to the National Cancer Institute guidelines, esophageal cancer at this stage is best treated by a.) 3 cancer drugs or b.) a combination of chemotherapy and radiation.
Dr. B. stated that the goal of treating EC at this stage is not usually curing the disease, as being "cured" would require surgery. And as stated many times previously, surgery is not an option at this point. Dr. B. informed us that after this course of treatment, E. would undergo more scans to "re-stage" the cancer. The goal is to eliminate the cancer from the lymph nodes and shrink the tumor in the esophagus, thereby making E. a candidate for surgery after all. As always, risks were discussed as well as potential long-term side effects.
The two courses of chemotherapy recommended by Dr. B. are as follows:
* Cisplatin - given via IV on day 1 (course #1) and again on day 29 (course #2)
* 5-FU (Fluorouracil) - given via IV on days 1 through 5 (course #1) and again on days 29 through 32 (course #2)
Day 1 would coincide with the first day of radiation . . . tentatively scheduled to begin next Wednesday, March 4th.
Some of the common potential side effects of the chemotherapy include: hair loss, mouth sores, sores in the lining of the digestive tract, nausea, diarrhea, decreased blood counts (risk of infections, risk of blood transfusions, rare risk of death). Side effects specific to Cisplatin include neuropathy (damage to certain nerves, most times resulting in painful tingling in fingers and toes), hearing loss, and kidney damage. Side effects specific to 5-FU include rashes on the palms and soles, and in rare cases, heart attacks.
Dr. B. informed us that these are the "big guns" of chemotherapy and this is very aggressive treatment. After treatment is complete, if the cancer is re-staged and it is determined that surgery is still not an option, more chemotherapy might be in E.'s future. It is likely that radiation would no longer be part of the treatment plan as there is a limit of radiation a person can receive.
The referral to UCDavis is still in the review process and we are hoping to hear something from them in the next couple of days too.
S.
P.S. For all those sick guys at work who think E. has butt issues . . . Boy, does he have a poop story for you! I'll have to let him tell it, because there is no way I could do it justice.
He agreed with Dr. L. that a combination of chemotherapy and radiation was the best course of action for E.'s situation. According to the National Cancer Institute guidelines, esophageal cancer at this stage is best treated by a.) 3 cancer drugs or b.) a combination of chemotherapy and radiation.
Dr. B. stated that the goal of treating EC at this stage is not usually curing the disease, as being "cured" would require surgery. And as stated many times previously, surgery is not an option at this point. Dr. B. informed us that after this course of treatment, E. would undergo more scans to "re-stage" the cancer. The goal is to eliminate the cancer from the lymph nodes and shrink the tumor in the esophagus, thereby making E. a candidate for surgery after all. As always, risks were discussed as well as potential long-term side effects.
The two courses of chemotherapy recommended by Dr. B. are as follows:
* Cisplatin - given via IV on day 1 (course #1) and again on day 29 (course #2)
* 5-FU (Fluorouracil) - given via IV on days 1 through 5 (course #1) and again on days 29 through 32 (course #2)
Day 1 would coincide with the first day of radiation . . . tentatively scheduled to begin next Wednesday, March 4th.
Some of the common potential side effects of the chemotherapy include: hair loss, mouth sores, sores in the lining of the digestive tract, nausea, diarrhea, decreased blood counts (risk of infections, risk of blood transfusions, rare risk of death). Side effects specific to Cisplatin include neuropathy (damage to certain nerves, most times resulting in painful tingling in fingers and toes), hearing loss, and kidney damage. Side effects specific to 5-FU include rashes on the palms and soles, and in rare cases, heart attacks.
Dr. B. informed us that these are the "big guns" of chemotherapy and this is very aggressive treatment. After treatment is complete, if the cancer is re-staged and it is determined that surgery is still not an option, more chemotherapy might be in E.'s future. It is likely that radiation would no longer be part of the treatment plan as there is a limit of radiation a person can receive.
The referral to UCDavis is still in the review process and we are hoping to hear something from them in the next couple of days too.
S.
P.S. For all those sick guys at work who think E. has butt issues . . . Boy, does he have a poop story for you! I'll have to let him tell it, because there is no way I could do it justice.
Radiation Oncologist
We just met with Dr. L., the radiation oncologist.
Dr. L. reviewed E.'s history . . . the tumor is located at the very end of the esophagus (called a Gastro-Esophageal Junction tumor) and some of the stomach is involved too. It appears though that the tumor originated in the esophagus and not the stomach. Because of this, they will treat the cancer as if it is esophageal cancer rather than gastric (stomach) cancer (treatments are different for the two cancers).
Dr. L. explained that the preferred course of treatment for this stage of EC is a combined treatment of radiation and chemotherapy. As indicated previously, the advanced stage of the cancer and the involvement of the lymph nodes does not make E. a candidate for surgery.
E. is scheduled for another CT scan on Thursday. The purpose of this CT is to look at the tumor in 3-D and plan the radiation beams in relation to the other organs. While the radiation will have to travel through other organs to reach the tumor and affected lymph nodes, they want to minimize the intensity of the radiation through healthy organs. E. will then have to be TATTOOED. (Ha! I told him I'd talk him into a tattoo one of these days!) He will be tattooed with several "dots" to mark where the radiation beams will be directed. Depending on the consultation with the doctor this afternoon, E. could tentatively begin radiation by the middle of next week. Radiation would be daily (Monday through Friday) for about 5 to 6 weeks.
Because E. will most likely be facing chemotherapy at the same time as the radiation, the side effects will probably appear quicker and be more intense than if he were to receive only one type of treatment at a time. His pain will increase immensely. He will be extremely fatigued. His throat will be EVEN sorer and swallowing will most likely be the biggest problem. Nausea and bowel irratibility are also common side effects, especially with the chemotherapy. Dr. L. indicated that 75% of patients undergoing this treatment will require a PEG-tube (feeding tube). Most patients wind up on a strict liquid diet, although some still manage to eat soft foods.
E.'s recovery from treatment will be very slow. After radiation alone, it usually takes a patient 4 to 6 weeks to recover. That recovery time is extended if chemotherapy is done concurrently. E. will most likely feel his worst at the conclusion of treatment. Other risks were discussed, as well as possible long-term effects.
Also, one of our concerns was that once E. underwent radiation treatment, there would be certain time periods that he wouldn't be allowed to be around children or pregnant women . . . we were relieved to find out that is NOT the case.
E. was also referred to yet another doctor, Dr. B., a palliative care specialist. Because his cancer is in an "advanced state," Dr. B. would be the doctor to assist with pain management.
E. is anxious to just get his treatment started. Next up . . . chemotherapy oncologist.
S.
Dr. L. reviewed E.'s history . . . the tumor is located at the very end of the esophagus (called a Gastro-Esophageal Junction tumor) and some of the stomach is involved too. It appears though that the tumor originated in the esophagus and not the stomach. Because of this, they will treat the cancer as if it is esophageal cancer rather than gastric (stomach) cancer (treatments are different for the two cancers).
Dr. L. explained that the preferred course of treatment for this stage of EC is a combined treatment of radiation and chemotherapy. As indicated previously, the advanced stage of the cancer and the involvement of the lymph nodes does not make E. a candidate for surgery.
E. is scheduled for another CT scan on Thursday. The purpose of this CT is to look at the tumor in 3-D and plan the radiation beams in relation to the other organs. While the radiation will have to travel through other organs to reach the tumor and affected lymph nodes, they want to minimize the intensity of the radiation through healthy organs. E. will then have to be TATTOOED. (Ha! I told him I'd talk him into a tattoo one of these days!) He will be tattooed with several "dots" to mark where the radiation beams will be directed. Depending on the consultation with the doctor this afternoon, E. could tentatively begin radiation by the middle of next week. Radiation would be daily (Monday through Friday) for about 5 to 6 weeks.
Because E. will most likely be facing chemotherapy at the same time as the radiation, the side effects will probably appear quicker and be more intense than if he were to receive only one type of treatment at a time. His pain will increase immensely. He will be extremely fatigued. His throat will be EVEN sorer and swallowing will most likely be the biggest problem. Nausea and bowel irratibility are also common side effects, especially with the chemotherapy. Dr. L. indicated that 75% of patients undergoing this treatment will require a PEG-tube (feeding tube). Most patients wind up on a strict liquid diet, although some still manage to eat soft foods.
E.'s recovery from treatment will be very slow. After radiation alone, it usually takes a patient 4 to 6 weeks to recover. That recovery time is extended if chemotherapy is done concurrently. E. will most likely feel his worst at the conclusion of treatment. Other risks were discussed, as well as possible long-term effects.
Also, one of our concerns was that once E. underwent radiation treatment, there would be certain time periods that he wouldn't be allowed to be around children or pregnant women . . . we were relieved to find out that is NOT the case.
E. was also referred to yet another doctor, Dr. B., a palliative care specialist. Because his cancer is in an "advanced state," Dr. B. would be the doctor to assist with pain management.
E. is anxious to just get his treatment started. Next up . . . chemotherapy oncologist.
S.
Thursday, February 19, 2009
No stent for now
We met with Dr. N. today and discussed the possibility of a stent. We brought up what we had learned through our research. Dr. N. agreed that the concerns raised were valid. He further stated that a stent would not necessarily make E. more comfortable when it comes to eating and that a stent may not add all that much. He suggested that the timing of stent depends on how E. is doing clinically. Certainly if E. were unable to swallow food at all or if he had difficulty simply swallowing oral secretions (saliva), a stent would be warranted.
As E. describes it, he is able to swallow food pretty good most of the time. He tends to feel full very easily, even after small quantities of food. The biggest problem for him currently is that after he eats, he has very uncomfortable upper stomach pain. The pain shows in his facial expressions and is significant enough that he cannot sleep. Dr. N. explained that the pain might still be associated with food stuck in the esophagus due to the tumor, even though E. feels the pain in his stomach rather than his esophagus. Dr. N. was willing to prescribe sleeping medication and/or pain medication, but can anyone guess what E.’s response was? This is the man that wouldn’t even take Tylenol after a root canal. He simply doesn’t like putting “unnecessary” (according to him) medication in his body. So needless to say, he turned down all medication offers.
Because E. is still able to get food down, Dr. N. suggested this course of action:
· increase E.’s caloric intake (because of E.’s diabetes, we’re going to have to be especially creative…if we’re unsuccessful, they may just have to manage E.’s blood sugars through different medications to get the calories into him)
· “graze and sip” all day long, rather than trying to eat 3 big meals
· try to drink 2 Glucernas (diabetic caloric drink) each day
· increase non-caffinated fluid as much as possible
· track weight closely (as a side note, E. has lost 5 lbs. in the 10 days)
Dilation is another option to widen E.’s esophagus, although Dr. N. doesn’t recommend doing that regularly as it can be risky and possibly perforate (put a hole in) the esophagus, creating even more problems. A feeding tube would be considered only if a stent were no longer an option, as they like to keep things as “normal” as possible.
E.’s blood pressure was noticeably low today….quite possibly due to the fact that he has resumed his Diabetes medication and not gotten in enough liquids, and is thereby dehydrated. E., of course, thinks that it might also be related to the fact that he hasn’t worked out lately. He is anxious to work out again and received the okay from the doctor, although the doctor told him to take it easy and listen to his body as he would fatigue easily.
We also discussed the pending appointments with Dr. L. (radiation oncologist) and Dr. B. (chemotherapy oncologist) scheduled for Monday. In speaking with other people, we were not able to gather much information about these two doctors (either positive or negative), but had heard great things about Drs. S. and S. Dr. N. was very receptive to referring us to Drs. S. and S., but after a few phone calls, we discovered that the earliest we would be able to see either doctor was more than two weeks away. Therefore, we will continue with the current plan of seeing Dr. L. and Dr. B. on Monday. We are still hoping to been seen at UCDavis as well.
As E. describes it, he is able to swallow food pretty good most of the time. He tends to feel full very easily, even after small quantities of food. The biggest problem for him currently is that after he eats, he has very uncomfortable upper stomach pain. The pain shows in his facial expressions and is significant enough that he cannot sleep. Dr. N. explained that the pain might still be associated with food stuck in the esophagus due to the tumor, even though E. feels the pain in his stomach rather than his esophagus. Dr. N. was willing to prescribe sleeping medication and/or pain medication, but can anyone guess what E.’s response was? This is the man that wouldn’t even take Tylenol after a root canal. He simply doesn’t like putting “unnecessary” (according to him) medication in his body. So needless to say, he turned down all medication offers.
Because E. is still able to get food down, Dr. N. suggested this course of action:
· increase E.’s caloric intake (because of E.’s diabetes, we’re going to have to be especially creative…if we’re unsuccessful, they may just have to manage E.’s blood sugars through different medications to get the calories into him)
· “graze and sip” all day long, rather than trying to eat 3 big meals
· try to drink 2 Glucernas (diabetic caloric drink) each day
· increase non-caffinated fluid as much as possible
· track weight closely (as a side note, E. has lost 5 lbs. in the 10 days)
Dilation is another option to widen E.’s esophagus, although Dr. N. doesn’t recommend doing that regularly as it can be risky and possibly perforate (put a hole in) the esophagus, creating even more problems. A feeding tube would be considered only if a stent were no longer an option, as they like to keep things as “normal” as possible.
E.’s blood pressure was noticeably low today….quite possibly due to the fact that he has resumed his Diabetes medication and not gotten in enough liquids, and is thereby dehydrated. E., of course, thinks that it might also be related to the fact that he hasn’t worked out lately. He is anxious to work out again and received the okay from the doctor, although the doctor told him to take it easy and listen to his body as he would fatigue easily.
We also discussed the pending appointments with Dr. L. (radiation oncologist) and Dr. B. (chemotherapy oncologist) scheduled for Monday. In speaking with other people, we were not able to gather much information about these two doctors (either positive or negative), but had heard great things about Drs. S. and S. Dr. N. was very receptive to referring us to Drs. S. and S., but after a few phone calls, we discovered that the earliest we would be able to see either doctor was more than two weeks away. Therefore, we will continue with the current plan of seeing Dr. L. and Dr. B. on Monday. We are still hoping to been seen at UCDavis as well.
Stent or no stent?
Dr. N. recently reminded us that a stent could be placed in E.'s esophagus if swallowing became too difficult.
An esophageal stent is a tube (can be plastic, silicone or metal) placed in the esophagus to keep a blocked area (specifically, the area with the tumor) open so that the patient can swallow food and liquids. While a stent does not “treat” cancer, it does offer “palliative care” and can make the patient more comfortable.
And so the discussion began . . .
Right now, E. does have difficulty swallowing (especially foods such as meat or bread), but he indicates it is not horrible.
Is having a procedure at this point necessary?
Should he subject his body to a procedure if it is unnecessary?
Would it be better to undergo a procedure now while his body isn’t weakened from radiation and/or chemotherapy?
Would a procedure weaken his body unnecessarily or would it be helpful to have a stent so he could get extra nutrition and calories now before facing harsh treatment?
Do the potential benefits of the surgery outweigh the possible risks and complications? Or, could the procedure make things worse?
In reading about other people’s stent experiences, we have discovered that for some people, their quality of life has greatly improved and they enjoyed eating again. But for other people, the stent proved to be painful and uncomfortable. Additionally, in rare cases, the stent can “slip” requiring yet another surgery, or the tumor can grow over the stent, causing even more complications.
One alternative to a stent might eventually be a feeding tube. Most people think of feeding tubes (NG tubes) that go through the mouth, down the throat and to the stomach. These are usually the kind of feeding tubes that a patient would have while in the hospital. The other kind of feeding tube is the “G tube” which is surgically implanted into the abdomen and liquid nutrients are fed through the port. While a patient would obtain necessary nutrients and calories via a feeding tube, they would no longer have the pleasure of eating “real” food. And we all know how much E. enjoys good food!
So today, we have another appointment with Dr. N. to discuss the pros and cons of a possible stent. Hopefully we can gather enough information that E. can make his decision with nothing but confidence that it is right for him.
S.
An esophageal stent is a tube (can be plastic, silicone or metal) placed in the esophagus to keep a blocked area (specifically, the area with the tumor) open so that the patient can swallow food and liquids. While a stent does not “treat” cancer, it does offer “palliative care” and can make the patient more comfortable.
And so the discussion began . . .
Right now, E. does have difficulty swallowing (especially foods such as meat or bread), but he indicates it is not horrible.
Is having a procedure at this point necessary?
Should he subject his body to a procedure if it is unnecessary?
Would it be better to undergo a procedure now while his body isn’t weakened from radiation and/or chemotherapy?
Would a procedure weaken his body unnecessarily or would it be helpful to have a stent so he could get extra nutrition and calories now before facing harsh treatment?
Do the potential benefits of the surgery outweigh the possible risks and complications? Or, could the procedure make things worse?
In reading about other people’s stent experiences, we have discovered that for some people, their quality of life has greatly improved and they enjoyed eating again. But for other people, the stent proved to be painful and uncomfortable. Additionally, in rare cases, the stent can “slip” requiring yet another surgery, or the tumor can grow over the stent, causing even more complications.
One alternative to a stent might eventually be a feeding tube. Most people think of feeding tubes (NG tubes) that go through the mouth, down the throat and to the stomach. These are usually the kind of feeding tubes that a patient would have while in the hospital. The other kind of feeding tube is the “G tube” which is surgically implanted into the abdomen and liquid nutrients are fed through the port. While a patient would obtain necessary nutrients and calories via a feeding tube, they would no longer have the pleasure of eating “real” food. And we all know how much E. enjoys good food!
So today, we have another appointment with Dr. N. to discuss the pros and cons of a possible stent. Hopefully we can gather enough information that E. can make his decision with nothing but confidence that it is right for him.
S.
Tuesday, February 17, 2009
No surgery
Our consultation with the surgeon for tomorrow has been cancelled. Because the cancer has spread, surgery is no longer an option at this point.
We do have local appointments with an oncologist, Dr. B., and a radiation oncologist, Dr. L., on Monday. I'm assuming we will know more about chemotherapy and radiation after those appointments.
We are also attempting to get a referral to the UCDavis Cancer Clinic, but have discovered that jumping through insurance hoops might make that difficult.
S.
We do have local appointments with an oncologist, Dr. B., and a radiation oncologist, Dr. L., on Monday. I'm assuming we will know more about chemotherapy and radiation after those appointments.
We are also attempting to get a referral to the UCDavis Cancer Clinic, but have discovered that jumping through insurance hoops might make that difficult.
S.
Monday, February 16, 2009
Staging
The news we received today was not good. The cancer has spread. The official stage is now defined as T3N1cM1a, which translates to Stage IVa.
According to the National Cancer Institute, the TNM system is the most commonly used cancer staging system. The TNM staging system is based on the extent of the tumor (T), spread to the lymph nodes (N), and metastatis (spread to other parts of the body) (M).
TNM Definitions
Primary tumor (T)
TX Primary tumor cannot be assessed
T0 No evidence of primary tumor
Tis Carcinoma in situ
T1 Tumor invades lamina propria or submucosa
T2 Tumor invades muscularis propria
T3 Tumor invades adventitia
T4 Tumor invades adjacent structures
Regional lymph nodes (N)
NX Regional lymph nodes cannot be assessed
N0 No regional lymph node metastasis
N1 Regional lymph node metastasis
Distant metastasis (M)
MX Distant metastasis cannot be assessed
M0 No distant metastasis
M1 Distant metastasis
M1a Metastasis in celiac lymph nodes
M1b Other distant metastasis
Stage Groupings
Stage 0
Tis, N0, M0
Cancer cells are only in the lining of esophagus (in the epithelium). Cancer has not invaded the outer layers or lymph nodes. May be called, "carcinoma in situ."
Stage I
T1, N0, M0
Cancer has invaded from the lining layer into outer layer of tissue, but not as far as the muscle layer. No tumor has spread to lymph nodes.
Stage IIA
T2, N0, M0T3, N0, M0
Cancer has invaded the muscle layer and outermost covering layer or tissue, but has not spread to lymph nodes.
Stage IIB
T1, N1, M0T2, N1, M0
Cancer has invaded the muscle layer and spread to nearby lymph nodes. It has not invaded the covering layer of the esophagus.
Stage III
T3, N1, M0T4, Any N, M0
Cancer has spread as far as the outer layer of the esophagus, into nearby tissues such as lymph nodes next to the esophagus. No tumor has spread to lymph nodes in the neck or abdomen, or to other organs.
Stage IV
Any T, Any N, M1
Cancer has spread to lymph nodes away from the original tumor or to other parts of the body (liver, bones, brain). Refer to the TNM Definitions above for specific Stage IV M1a and M1b differentiation.
Stage IVA
Any T, Any N, M1a
Stage IVB
Any T, Any N, M1b
According to the National Cancer Institute, the TNM system is the most commonly used cancer staging system. The TNM staging system is based on the extent of the tumor (T), spread to the lymph nodes (N), and metastatis (spread to other parts of the body) (M).
TNM Definitions
Primary tumor (T)
TX Primary tumor cannot be assessed
T0 No evidence of primary tumor
Tis Carcinoma in situ
T1 Tumor invades lamina propria or submucosa
T2 Tumor invades muscularis propria
T3 Tumor invades adventitia
T4 Tumor invades adjacent structures
Regional lymph nodes (N)
NX Regional lymph nodes cannot be assessed
N0 No regional lymph node metastasis
N1 Regional lymph node metastasis
Distant metastasis (M)
MX Distant metastasis cannot be assessed
M0 No distant metastasis
M1 Distant metastasis
M1a Metastasis in celiac lymph nodes
M1b Other distant metastasis
Stage Groupings
Stage 0
Tis, N0, M0
Cancer cells are only in the lining of esophagus (in the epithelium). Cancer has not invaded the outer layers or lymph nodes. May be called, "carcinoma in situ."
Stage I
T1, N0, M0
Cancer has invaded from the lining layer into outer layer of tissue, but not as far as the muscle layer. No tumor has spread to lymph nodes.
Stage IIA
T2, N0, M0T3, N0, M0
Cancer has invaded the muscle layer and outermost covering layer or tissue, but has not spread to lymph nodes.
Stage IIB
T1, N1, M0T2, N1, M0
Cancer has invaded the muscle layer and spread to nearby lymph nodes. It has not invaded the covering layer of the esophagus.
Stage III
T3, N1, M0T4, Any N, M0
Cancer has spread as far as the outer layer of the esophagus, into nearby tissues such as lymph nodes next to the esophagus. No tumor has spread to lymph nodes in the neck or abdomen, or to other organs.
Stage IV
Any T, Any N, M1
Cancer has spread to lymph nodes away from the original tumor or to other parts of the body (liver, bones, brain). Refer to the TNM Definitions above for specific Stage IV M1a and M1b differentiation.
Stage IVA
Any T, Any N, M1a
Stage IVB
Any T, Any N, M1b
**************************************
Edited to add: July 1, 2009 positive supraclavicular lymph node now stages E. as a Stage 4b.
Saturday, February 14, 2009
Help!
I have spent the day researching esophageal cancer. It appears that the best course of treatment is a three-prong approach of radiation, chemotherapy and surgery.
These words have repeatedly jumped out at me . . . "Don't delay!"
It is highly suggested we visit a major cancer clinic. Additionally, it is recommended over and over again to see the best surgeons (not just any ole surgeon either . . . the best thoracic surgeon who specializes in esophageal cancer) and the best oncologists (again, not just a general oncologist, but an oncologist who's expertise is in esophageal cancer), even if that means travelling out of the area.
So, how do you go about finding the BEST?!? You talk to people.
People . . . I'm talking to you! Help us figure this out. Talk to your family, your friends, your co-workers, your neighbors . . . we need to find the best of the best and we need to find them fast!
S.
These words have repeatedly jumped out at me . . . "Don't delay!"
It is highly suggested we visit a major cancer clinic. Additionally, it is recommended over and over again to see the best surgeons (not just any ole surgeon either . . . the best thoracic surgeon who specializes in esophageal cancer) and the best oncologists (again, not just a general oncologist, but an oncologist who's expertise is in esophageal cancer), even if that means travelling out of the area.
So, how do you go about finding the BEST?!? You talk to people.
People . . . I'm talking to you! Help us figure this out. Talk to your family, your friends, your co-workers, your neighbors . . . we need to find the best of the best and we need to find them fast!
S.
Friday, February 13, 2009
New EUS date
E. just received a call from the doctor's office. It seems as if he is able to get the EUS done sooner than March 9th after all. The EUS is now scheduled for Monday morning!
That means that today, E. needs to get an EKG, a chest x-ray and all his lab work done. We're off and running.
**********************
Update: E. was able to get his lab work and his ECG (not sure what the difference is between an ECG and an EKG, but an ECG was what finally ordered) done. For whatever reason, the chest x-ray was no longer necessary. It is our understanding that the ECG and lab work was more for the anesthesiologist than Dr. C. The EUS scheduled for Monday requires heavy sedation, and presumably better monitoring as there are more inherent risks. As far as we know, it is still an out-patient/same-day-surgery procedure. Other than calling to confirm his kidneys are functioning properly tomorrow (so he can resume his diabetic medication), he has the weekend off from medical crud.
S.
That means that today, E. needs to get an EKG, a chest x-ray and all his lab work done. We're off and running.
**********************
Update: E. was able to get his lab work and his ECG (not sure what the difference is between an ECG and an EKG, but an ECG was what finally ordered) done. For whatever reason, the chest x-ray was no longer necessary. It is our understanding that the ECG and lab work was more for the anesthesiologist than Dr. C. The EUS scheduled for Monday requires heavy sedation, and presumably better monitoring as there are more inherent risks. As far as we know, it is still an out-patient/same-day-surgery procedure. Other than calling to confirm his kidneys are functioning properly tomorrow (so he can resume his diabetic medication), he has the weekend off from medical crud.
S.
Thursday, February 12, 2009
Adenocarcinoma
It has been a long and frustrating day of trying to find out answers and collect information. I won't bore you with the many confusing details and will just share the end results.
A consultation with the surgeon, Dr. H., has been scheduled for February 18th.
After many crossed wires and much miscommunication, Dr. N. himself finally called at 4:55 p.m. and cleared up much of the day's confusion.
The CT scan showed no evidence of the disease spreading. It did show a severe thickening in the walls of the esophagus.
The bioposy indicated "Adenocarcinoma." There are two types of esophageal cancer; Adenocarcinoma is one of them.
Dr. N. recommended an Endoscopic Ultrasound (EUS). EUS is a state-of-the-art technology that combines endoscopy with ultrasound. The ultrasound will be able to determine how deep the tumor is in the walls of the esophagus, which would help determine what type of surgery needs to be performed, how deep the surgeon has to cut, etc. In general, it will provide a much more detailed look at the tumor. The EUS also has the ability to scrutinize and biopsy the lymph nodes in the area to see if the disease has spread. (Wait a minute, didn't the CT show "no evidence of the disease spreading?" Yup, you read that right, BUT the CT isn't always conclusive.) One of the most helpful outcomes of the EUS is "staging." For cancer patients, staging describes the extent of the cancer and how early or advanced it is. Staging is important because it helps the doctors plan the most appropriate course of treatment.
Because the EUS is so advanced, there are only two physicians with specialized training and expertise to peform the EUS in the entire state. Fortunately, they are both located in Reno. Unfortunately, that means they are in high demand. E. currently has an appointment scheduled with Dr. C. for an EUS on March 9th, although Dr. N. is trying to squeeze him in before that. (And prior to the EUS, E. has to get an EKG, a chest x-ray and more lab work.)
In the meantime, Dr. N. wants E. to continue to meet with the surgeon for the consultation on February 18th. He indicated that Dr. H. may want to proceed with surgery even without the EUS information. Whether pre or post surgery, the EUS will hopefully provide valuable information.
S.
A consultation with the surgeon, Dr. H., has been scheduled for February 18th.
After many crossed wires and much miscommunication, Dr. N. himself finally called at 4:55 p.m. and cleared up much of the day's confusion.
The CT scan showed no evidence of the disease spreading. It did show a severe thickening in the walls of the esophagus.
The bioposy indicated "Adenocarcinoma." There are two types of esophageal cancer; Adenocarcinoma is one of them.
Dr. N. recommended an Endoscopic Ultrasound (EUS). EUS is a state-of-the-art technology that combines endoscopy with ultrasound. The ultrasound will be able to determine how deep the tumor is in the walls of the esophagus, which would help determine what type of surgery needs to be performed, how deep the surgeon has to cut, etc. In general, it will provide a much more detailed look at the tumor. The EUS also has the ability to scrutinize and biopsy the lymph nodes in the area to see if the disease has spread. (Wait a minute, didn't the CT show "no evidence of the disease spreading?" Yup, you read that right, BUT the CT isn't always conclusive.) One of the most helpful outcomes of the EUS is "staging." For cancer patients, staging describes the extent of the cancer and how early or advanced it is. Staging is important because it helps the doctors plan the most appropriate course of treatment.
Because the EUS is so advanced, there are only two physicians with specialized training and expertise to peform the EUS in the entire state. Fortunately, they are both located in Reno. Unfortunately, that means they are in high demand. E. currently has an appointment scheduled with Dr. C. for an EUS on March 9th, although Dr. N. is trying to squeeze him in before that. (And prior to the EUS, E. has to get an EKG, a chest x-ray and more lab work.)
In the meantime, Dr. N. wants E. to continue to meet with the surgeon for the consultation on February 18th. He indicated that Dr. H. may want to proceed with surgery even without the EUS information. Whether pre or post surgery, the EUS will hopefully provide valuable information.
S.
Wednesday, February 11, 2009
The CT Scan
E. drank his first bottle of Barium contrast last night. They said it was better chilled. E. said he wasn't sure anything could much help the taste. He described it as a chalky cherry Milk of Magnesia flavor, mixed with hand lotion. Yum. 5:00 a.m. and the second bottle was down. 7:00 a.m. and the third and final bottle was down.
We arrived the Radiology Department and soon he was ready to slide into the big CT machine. They inserted an IV and injected Iodine (E. says it leaves a nasty metallic taste in your mouth) to enhance the images and makes the structures/organs easier to differentiate from each other. The entire scan was over in less than five minutes!
We were disappointed to find out that results would not be immediately available. The CT would be reviewed by the radiologist, who would then forward the information to Dr. N. They said we could expect a call later this evening or tomorrow morning.
E. was told to drink lots of water and to stay close to the toilet for the next 48 hours . . . most people wind up having lots of white diarrhea until all the Barium exits the system. He was also told to return on Friday to have some follow-up lab work taken. It is important to make sure the kidneys are functioning properly and that the Iodine has been eliminated before resuming taking any medication, especially for diabetics.
S.
We arrived the Radiology Department and soon he was ready to slide into the big CT machine. They inserted an IV and injected Iodine (E. says it leaves a nasty metallic taste in your mouth) to enhance the images and makes the structures/organs easier to differentiate from each other. The entire scan was over in less than five minutes!
We were disappointed to find out that results would not be immediately available. The CT would be reviewed by the radiologist, who would then forward the information to Dr. N. They said we could expect a call later this evening or tomorrow morning.
E. was told to drink lots of water and to stay close to the toilet for the next 48 hours . . . most people wind up having lots of white diarrhea until all the Barium exits the system. He was also told to return on Friday to have some follow-up lab work taken. It is important to make sure the kidneys are functioning properly and that the Iodine has been eliminated before resuming taking any medication, especially for diabetics.
S.
Tuesday, February 10, 2009
The Endoscopy
We were only at the "Endoscopy Center" for a short time when they called E. back and began prepping him for the procedure. They sedated him and gave him an "amnesia cocktail," reminding me that he may not remember things even for several hours after the endoscopy. Although he was scheduled for 9:30, he didn't actually go into the operating room until 9:50 a.m.
Approximately an hour and twenty minutes later, I was called back to join E. in his recovery room. He was in an out of consciousness and clearly would have been entirely happy if we left him alone and let him sleep. He opened his eyes several times, but would then shut them again. The nurse explained that he was struggling a bit to come out of sedation, but would come around shortly.
The nurse stated that they had found a blockage and it was obvious why he had had difficulty swallowing. She explained that the doctor had prescribed two different medications: Omeprazole (essentially Prilosec) - to be taken 30 minutes before meals and which would help decrease the amount of acid in the stomach and Sucralfate (Carafate) - to be taken 60 minutes before meals and which would form a protective coating over the irritated lining. She also stated that the doctor ordered a CT scan. A CT scan is like a high-tech x-ray that uses sophisticated computers to produce multiple images of the inside of the body. These scans provide greater clarity and reveal more details than regular x-ray exams. In order to prepare for the CT scan, E. would need to drink barium contrast (to create a better CT image) as well as submit to blood work (creatinine and BUN - to obtain a pre-CT kidney functioning level).
We were then shown in to a small room, where we sat on the couch and waited for Dr. N. Dr. N. sat down with us and explained that a mass, or tumor, was discovered in E.'s esophagus and was clearly the cause of his swallowing difficulties. He repeatedly referred to the "mass" or the "tumor," but had yet to use the C word. When I could stand it no longer, I asked, "Are we talking cancer here?" He firmly stated, "Definitely" and the nurse shook her head in agreement. Dr. N. described the tumor with a variety of adjectives (I think I recall one being "fizzy") and said he was confident that it was cancer as it had all the markings of such. He informed us that tissue samples had been collected to be biopsied and he anticipated the biopsy results would confirm his suspicions. He recommended that surgery be scheduled as soon as possible, which his office would help facilitate. Like the nurse previously explained to us, he also ordered a CT scan to see if the cancer had spread to lymph nodes or other organs.
We left the office with two prescriptions for medication, one prescription for Barium contrast, two lab slips, one CT order, and dazed looks on our faces. I might add that E. had a dazed look because of sedation and doesn't remember any of these events, nor the majority of the rest of the day. On the other hand, I had a dazed look because my little brain was overwhelmed with the magnitude of the information we just received.
S.
Approximately an hour and twenty minutes later, I was called back to join E. in his recovery room. He was in an out of consciousness and clearly would have been entirely happy if we left him alone and let him sleep. He opened his eyes several times, but would then shut them again. The nurse explained that he was struggling a bit to come out of sedation, but would come around shortly.
The nurse stated that they had found a blockage and it was obvious why he had had difficulty swallowing. She explained that the doctor had prescribed two different medications: Omeprazole (essentially Prilosec) - to be taken 30 minutes before meals and which would help decrease the amount of acid in the stomach and Sucralfate (Carafate) - to be taken 60 minutes before meals and which would form a protective coating over the irritated lining. She also stated that the doctor ordered a CT scan. A CT scan is like a high-tech x-ray that uses sophisticated computers to produce multiple images of the inside of the body. These scans provide greater clarity and reveal more details than regular x-ray exams. In order to prepare for the CT scan, E. would need to drink barium contrast (to create a better CT image) as well as submit to blood work (creatinine and BUN - to obtain a pre-CT kidney functioning level).
We were then shown in to a small room, where we sat on the couch and waited for Dr. N. Dr. N. sat down with us and explained that a mass, or tumor, was discovered in E.'s esophagus and was clearly the cause of his swallowing difficulties. He repeatedly referred to the "mass" or the "tumor," but had yet to use the C word. When I could stand it no longer, I asked, "Are we talking cancer here?" He firmly stated, "Definitely" and the nurse shook her head in agreement. Dr. N. described the tumor with a variety of adjectives (I think I recall one being "fizzy") and said he was confident that it was cancer as it had all the markings of such. He informed us that tissue samples had been collected to be biopsied and he anticipated the biopsy results would confirm his suspicions. He recommended that surgery be scheduled as soon as possible, which his office would help facilitate. Like the nurse previously explained to us, he also ordered a CT scan to see if the cancer had spread to lymph nodes or other organs.
We left the office with two prescriptions for medication, one prescription for Barium contrast, two lab slips, one CT order, and dazed looks on our faces. I might add that E. had a dazed look because of sedation and doesn't remember any of these events, nor the majority of the rest of the day. On the other hand, I had a dazed look because my little brain was overwhelmed with the magnitude of the information we just received.
S.
Monday, February 9, 2009
The 1st Doctor Appt
E.'s been having trouble swallowing. Food seems to get stuck in the lower part of his esophagus and won't go all the way down. Usually he coughs and clears his throat a bit and tries to wash things down with water. It is clearly uncomfortable. Last week, stuck food actually made him throw up.
So, to the doctor we went. Dr. N . . . the gastroenterologist. Dr. N. reviewed E.'s symptoms with him and suggested doing an endoscopy immediately. An endoscopy is a procedure where a tube with a camera is inserted down the throat to check things out; it can also remove tissue and collect samples to biopsy. Dr. N. indicated that he suspected some definite gastric reflux (stomach acid which 'backs up' into the esophagus) and possibly a case of "Barrett's Esophagus" (long-term acid reflux which actually changes the cells in the lining of the esophagus, and which is often a pre-cancerous condition). Dr. N. further explained that if the lining of the esophagus had become irrated and then healed repeatedly, the build-up (I'd imagine similar to scar tissue) could make the passageway smaller and make passing food difficult. If that is what Dr. N. discovers during the endoscopy, he will insert a "balloon" and inflate it, thereby expanding the passageway again.
E.'s endoscopy is scheduled for tomorrow morning.
S.
So, to the doctor we went. Dr. N . . . the gastroenterologist. Dr. N. reviewed E.'s symptoms with him and suggested doing an endoscopy immediately. An endoscopy is a procedure where a tube with a camera is inserted down the throat to check things out; it can also remove tissue and collect samples to biopsy. Dr. N. indicated that he suspected some definite gastric reflux (stomach acid which 'backs up' into the esophagus) and possibly a case of "Barrett's Esophagus" (long-term acid reflux which actually changes the cells in the lining of the esophagus, and which is often a pre-cancerous condition). Dr. N. further explained that if the lining of the esophagus had become irrated and then healed repeatedly, the build-up (I'd imagine similar to scar tissue) could make the passageway smaller and make passing food difficult. If that is what Dr. N. discovers during the endoscopy, he will insert a "balloon" and inflate it, thereby expanding the passageway again.
E.'s endoscopy is scheduled for tomorrow morning.
S.
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