Mom's Assessment

Ginny_B

Here is what is being recommended to mom's oncologist. (Any words of wisdom???)


Patient with locally advanced esophageal carcinoma with evidence of mediastinal adenopathy is being prepared and simulated for external beam radiation. There has also been discussion of intracavitary radiation following the initial course. I explained to the family that this was a very appropriate treatment and that the patient would not be a candidate for surgery. Both her age and the extent of disease and stage would preclude any consideration of surgical intervention. We then discussed the approaches to locally advance esophageal cancer of which there are many.

Although the use of neoadjuvant chemotherapy had been popularized, the data regarding preradiation chemotherapy is equivocal. Nonetheless, combined modality therapy has become a preferred management approach with a wide variety of chemotherapeutic regimens applied. In light of the patient's age at 84, one would not wish to her to have a full dose of chemotherapy.

However, there are some options. Several radiopotentiating agents could be used at low dose. These include Taxanes, Carboplatin or Cisplatin, 5-FU, Mitomycin-C and even Navelbine. Weekly doses of Carboplatin or Cisplatin could be considered. I did not see any role for laboratory directed approaches in this patient and felt that the outlined treatment program was highly appropriate. The patient will begin radiation soon and may benefit from the discussion of the combined modality approaches that we have outlined with a medical oncologist. The patient will be following up with your office. I appreciate meeting this patient in consultation.

NikiMo

Little confused
Hi Ginny,

Is this a letter from your moms radiation oncologist to her potential medical oncologist? Has your mom not yet met with the medical oncologist?

How this worked for my husband was:

Diagnosed by GI doctor
GI doctor ordered CT scan
GI doctor ordered EUS
-at this point I realized we needed second opinions-
consult at Fox Chase with surgeon and med onc.
consult at PENN with med onc. and radiation onc. on same day
-PENN chosen for treatment-
Med Onc. has been the 'quarterback' of the team, he put in all orders for Jeff's general health, he checks his counts every week, he gets us set up with the nutritionist
Not do downplay the radiation oncologist, he ordered the PET/CT and setup the radiation field but overall care has been more in the medical oncologists hands. This is just one case though.

Niki

Ginny_B

NikiMo said:

Little confused
Hi Ginny,

Is this a letter from your moms radiation oncologist to her potential medical oncologist? Has your mom not yet met with the medical oncologist?

How this worked for my husband was:

Diagnosed by GI doctor
GI doctor ordered CT scan
GI doctor ordered EUS
-at this point I realized we needed second opinions-
consult at Fox Chase with surgeon and med onc.
consult at PENN with med onc. and radiation onc. on same day
-PENN chosen for treatment-
Med Onc. has been the 'quarterback' of the team, he put in all orders for Jeff's general health, he checks his counts every week, he gets us set up with the nutritionist
Not do downplay the radiation oncologist, he ordered the PET/CT and setup the radiation field but overall care has been more in the medical oncologists hands. This is just one case though.

Niki

This is a cancer specialist
This is a cancer specialist that we wanted to see before any treatment started. He sent his assessment to the Radiology Department, the doc who did the endoscope, and the primary care physician. I will hand-carry his letter to the oncologist we are meeting with on Thursday.

We are not discounting anyone, but we want to follow the protocol of the doctor who provided the above assessment.

TerryV

Forgive my poor memory
Ginny,

There have been so many new postings lately. Had it been determined before this meeting that your mom's cancer is a Stage 4?

The cisplatin & 5FU were both used in my husband's treatment. He also had radiation - 28 sessions - with the chemo done during weeks 2 & 5 of the radiation.

I would believe at 84 that it is reasonable that your mom would find full dose chemos challenging. My husband at age 48 found them rough.

I'm sure others with more knowledge of treatment regimes will respond. I believe that attitude is so much a part of a successful treatment plan. Your photo indicates that you and your mom have attitude and faith. Prayers are with you both!

Terry

unclaw2002

Ginny,
This is a difficult
Ginny,

This is a difficult situation but I would probe the doctor a bit more. In dealing with this issue for my dad who was 78 when diagnosed and Stage III (diabetic) - the feeling was that the normal protocol of 3 chemo agents would be too much for him, but that only using one agent was not recommended because the benefit/reward is questioned. So they used two chemo agents with mixed results.

One of the real problems in determining the right chemo cocktail (and it is an art) is that if you don't use strong enough chemo you are subjecting the patient to the side effects with little likelihood of actually providing real benefits to the patient. I would ask the doctor what would he/she do if it was her mother. At these lower level doses of chemo what does the reseach indicate in terms of enhanced longevity verses quality of life and side effects. It seems to me, not a medical opinion, that sometimes doctors offer low dose chemo so that they feel like they are at least trying something. I would want to know what the clinical dose is normally administered, and then what they are recommending for your mom.

Best,
Cindy

Ginny_B

unclaw2002 said:

Ginny,
This is a difficult
Ginny,

This is a difficult situation but I would probe the doctor a bit more. In dealing with this issue for my dad who was 78 when diagnosed and Stage III (diabetic) - the feeling was that the normal protocol of 3 chemo agents would be too much for him, but that only using one agent was not recommended because the benefit/reward is questioned. So they used two chemo agents with mixed results.

One of the real problems in determining the right chemo cocktail (and it is an art) is that if you don't use strong enough chemo you are subjecting the patient to the side effects with little likelihood of actually providing real benefits to the patient. I would ask the doctor what would he/she do if it was her mother. At these lower level doses of chemo what does the reseach indicate in terms of enhanced longevity verses quality of life and side effects. It seems to me, not a medical opinion, that sometimes doctors offer low dose chemo so that they feel like they are at least trying something. I would want to know what the clinical dose is normally administered, and then what they are recommending for your mom.

Best,
Cindy

I'm going to ask the
I'm going to ask the Oncologist tomorrow what "stage" my mom is. No one has told us that and I go into brain meltdown and forget to ask. It's like a sudden influx of bad information coming to me that I just try to sponge it all in at the moment and keep forgetting to ask about the stage.

TerryV

Ginny_B said:

I'm going to ask the
I'm going to ask the Oncologist tomorrow what "stage" my mom is. No one has told us that and I go into brain meltdown and forget to ask. It's like a sudden influx of bad information coming to me that I just try to sponge it all in at the moment and keep forgetting to ask about the stage.

It's this statement here
Ginny, that makes me wonder...

"I explained to the family that this was a very appropriate treatment and that the patient would not be a candidate for surgery. Both her age and the extent of disease and stage would preclude any consideration of surgical intervention"

If your mom has not yet had either a PET scan or Ultrasound scope, I don't believe they will know the staging. Others will chime in if I'm wrong.

Not a candidate for surgery typically means Stage 4. You need to know before you can decide how to best proceed with treatment.

Prayers and good wishes for better news coming your way!

Terry

Laura23

TerryV said:

It's this statement here
Ginny, that makes me wonder...

"I explained to the family that this was a very appropriate treatment and that the patient would not be a candidate for surgery. Both her age and the extent of disease and stage would preclude any consideration of surgical intervention"

If your mom has not yet had either a PET scan or Ultrasound scope, I don't believe they will know the staging. Others will chime in if I'm wrong.

Not a candidate for surgery typically means Stage 4. You need to know before you can decide how to best proceed with treatment.

Prayers and good wishes for better news coming your way!

Terry

Notebook
Hi Ginny,

A tip that helped my husband and I as we went through this phase was to get a notebook and write down the questions that we had before we went for the doctor visit. I would leave space between the questions to write the answers down. That way we didn't have to try to remember. I also got a notebook that had pockets in it to put valuable papers that they would give us. This way all the information was in one place. If there was anything I couldn't remember later, I could just go back to my notes. It also helped if I needed to research anything later.

Just a suggestion.

Laura
Wife to Luis, age 51
Dx 4/11/2011. T3N1M0. Stage 3
MIE 8/30/2011

stepmj

Laura23 said:

Notebook
Hi Ginny,

A tip that helped my husband and I as we went through this phase was to get a notebook and write down the questions that we had before we went for the doctor visit. I would leave space between the questions to write the answers down. That way we didn't have to try to remember. I also got a notebook that had pockets in it to put valuable papers that they would give us. This way all the information was in one place. If there was anything I couldn't remember later, I could just go back to my notes. It also helped if I needed to research anything later.

Just a suggestion.

Laura
Wife to Luis, age 51
Dx 4/11/2011. T3N1M0. Stage 3
MIE 8/30/2011

lower doses
Hi Ginny - I don't post often but something keeps me checking this site even though I lost my father to EC 1 year ago this month. Your post caught my eye due to the age of your mother and questions about lower doses. My Dad was 84 when he was diagnosed stage IVb with mets to the liver. He received lower doses of two chemo agents - one was the one that makes you sensitive to cold (can't remember the name) and also 5fu. I don't know exactly how low the dose was on the first one, but for 5fu he only received it for 24 hours - others get it up to 96 hours. He received these every 2 weeks. I was fearful this would not impact the cancer but after 5 rounds the esophagus and liver spots reduced by 2/3s - we considered this a great success. One year after diagnosis he received SIR-spheres for the liver mets. Unfortunately he never fully recovered from the SIR-spheres and we lost him 15 mos after initial diagnosis.
He tolerated the chemo pretty well - pretty much the same pattern as others. His quality of life didn't really degrade until 12 months into the fight.
I hope this is helpful - I wish you all the best and will keep you and your mother in my prayers.
Mary Jo

Ginny_B

Mom has had several CT scans
Mom has had several CT scans a PET scan, and just about every test mentioned on this board. She is "inoperable" because of her age and not being able to recover from the major surgery of IL or MIE (forget the acronym). The cancer has not spread to stomach, liver, etc. They are suspicious of some nodes that appear swollen immediately around the esophagus. The Radiology doc said he felt some enlarged nodes in the neck. The other doc did not confirm this. They will treat with radiation and a radiation boost, and now probably with added mild dose of chemo.

No one has told us the stage and as I said, I have forgotten to ask. I will ask tomorrow.

I am glad to hear about a similar case with the 84 year old father. This is the result I hope for - to shrink it and keep it from spreading. I also want a quality of life for my mom that will not be so harsh.

I'll know more tomorrow after we meet with the Oncologist and show him the letter from Dr. Nagourney. Thanks so much for all the input. I need it!

chemosmoker

Ginny_B said:

Mom has had several CT scans
Mom has had several CT scans a PET scan, and just about every test mentioned on this board. She is "inoperable" because of her age and not being able to recover from the major surgery of IL or MIE (forget the acronym). The cancer has not spread to stomach, liver, etc. They are suspicious of some nodes that appear swollen immediately around the esophagus. The Radiology doc said he felt some enlarged nodes in the neck. The other doc did not confirm this. They will treat with radiation and a radiation boost, and now probably with added mild dose of chemo.

No one has told us the stage and as I said, I have forgotten to ask. I will ask tomorrow.

I am glad to hear about a similar case with the 84 year old father. This is the result I hope for - to shrink it and keep it from spreading. I also want a quality of life for my mom that will not be so harsh.

I'll know more tomorrow after we meet with the Oncologist and show him the letter from Dr. Nagourney. Thanks so much for all the input. I need it!

Waiting to hear what happens next-I can RELATE!
Ginny,
Just a note to say we are reading ALL your posts and follow-ups with great concern.
Sounds like stage IV, as Terry said, BUT you also note that the reason for no surgery is NOT spread or regional issues or the like, but simply her age and ability to recover from the surgery. I would think this to be a HUGE personal decision for your mom and you, and a good oncologist and thoracic surgeon to decide. I am sure there are some cancer centers that WOULD do the surgery for you mom (UPMC comes to mind), and some that won't. In MY OPINION, it is simply going to come down to where you go and who you ask, and get those second and third opinions to help you decide.

The exact same reason for NOT doing full-dose chemo or having much benefit of result compared to the cost to my health is the exact reason I opted NOT do do ANY chemo at all. The benefit was clearly explained that even at my young age, with the progression of my cancer and location of the tumors and nodes that were infected already, the chemo would cost me my quality of life, and in the end offer little in the way of length of time added to my life. So I chose none. They wanted to try ONE chemo drug, at low slow infusion doses over the course of a whole week that most get in four to six hours in the infusion lab, and admitting me for it at that for a week in the hospital. I hate hospitals and will do ANYTHING to avoid being admitted.

I will eagerly await the outcome of your next appointment(s) and what you two decide.
Sending all our love and support. Just wanted to chime in, as your situation and what the doctors said made me think of my treatment plan and outcome of early visits.

God bless you and your mom. You are obviously such a great pair and I admire you both greatly. Feel like I know you both.

-Eric

Ginny_B

chemosmoker said:

Waiting to hear what happens next-I can RELATE!
Ginny,
Just a note to say we are reading ALL your posts and follow-ups with great concern.
Sounds like stage IV, as Terry said, BUT you also note that the reason for no surgery is NOT spread or regional issues or the like, but simply her age and ability to recover from the surgery. I would think this to be a HUGE personal decision for your mom and you, and a good oncologist and thoracic surgeon to decide. I am sure there are some cancer centers that WOULD do the surgery for you mom (UPMC comes to mind), and some that won't. In MY OPINION, it is simply going to come down to where you go and who you ask, and get those second and third opinions to help you decide.

The exact same reason for NOT doing full-dose chemo or having much benefit of result compared to the cost to my health is the exact reason I opted NOT do do ANY chemo at all. The benefit was clearly explained that even at my young age, with the progression of my cancer and location of the tumors and nodes that were infected already, the chemo would cost me my quality of life, and in the end offer little in the way of length of time added to my life. So I chose none. They wanted to try ONE chemo drug, at low slow infusion doses over the course of a whole week that most get in four to six hours in the infusion lab, and admitting me for it at that for a week in the hospital. I hate hospitals and will do ANYTHING to avoid being admitted.

I will eagerly await the outcome of your next appointment(s) and what you two decide.
Sending all our love and support. Just wanted to chime in, as your situation and what the doctors said made me think of my treatment plan and outcome of early visits.

God bless you and your mom. You are obviously such a great pair and I admire you both greatly. Feel like I know you both.

-Eric

Thanks Eric, you have the
Thanks Eric, you have the handle on the issues with mom. You have it in a nutshell. I suspect that my mom would refuse that kind of surgery anyway.

No spread so far. No confirmed affected nodes. So we hope to kill it where it is and stop further spread. That is my hope. Hope hope hope - it's what we hold fast to!

I'll be back this afternoon with what the Onc said.

chemosmoker

Ginny_B said:

Thanks Eric, you have the
Thanks Eric, you have the handle on the issues with mom. You have it in a nutshell. I suspect that my mom would refuse that kind of surgery anyway.

No spread so far. No confirmed affected nodes. So we hope to kill it where it is and stop further spread. That is my hope. Hope hope hope - it's what we hold fast to!

I'll be back this afternoon with what the Onc said.

Standing by.....
Ginny,
I will be waiting to read it then!
HANG IN THERE AND YOU AND THE SISTERS HOLD EACH OTHER, AND MOM, UP!

Lots of love,
-Eric