Cancer Survivors Network

Hello "aj77"and welcome to this site.

(First, apologies--I have no idea as to why my postings "spread from East to West" when I submit a post. So those reading this page will just have to move the text back and forth to read the whole sentence.)

My name is William W. Marshall and I am now going into my 7th year of being cancer free. My diagnosis was Esophageal Cancer Stage III (T3N1M0). I was operated on by Dr. James D. Luketich at the University of Pittsburgh Medical Center in Pittsburgh. He is the pioneer of the Minimally Invasive Esophagectomy--a much less invasive method of operation. I had seven small band aid cuts. I was one day in ICU, 1 day in a step-down unit, on Day 3 I was on the regular floor, Day Five, I was discharged from the hospital. I did have pre-op chemo treatments via two 96-hr. continual infusions of 5-FU and Carboplatin, together with 5 weeks of radiation. I had minimal side effects from the pre-op treatments. To me this is the worst part for many of the patients now posting on this site. It can make one wonder if they will make it. But for many, they do recover and have successful surgeries and go on to have meaningful lives.

You state that your mother-in-law is presently having chemo and radiation treatments. We can all identify with that, but none presently posting on this site are dealing with the same cancer as your relative.

I am totally unfamiliar with the diagnosis of your mother in law. When you say, "Stage IV", I know one thing. In all that I read that means "more invasive, advanced". I am thinking that this is the same for your Mother-in-law. One thing I can tell you is that we share one thing in common, the sudden shock and sorrow that a cancer diagnosis brings. I can only imagine the emotions that you and your wife are dealing with. I never like to see one make an entry on this site, that does not have a reply. Since no one has answered you, it means only one thing. None of us posting presently are dealing with your particular question.

We do have one person who posts from time to time. They have the "user name" "OncoSurge". I would defer to him/her for some professional comments, because they list themselves as a professional.

Regrettably, I haven't the slightest idea of the suffering of your Mother-in-law, the treatments available, or do I know of any recent posting like hers on this site with that diagnosis. So I just wanted you to know that we care, but stop short of commenting on conditions with which we are not familiar.
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You have said: My mother-in-law has undifferentiated polimorphic scaroma in her throat spine and abdomin area. It is stage 4."November 20, 2009 - 8:07am

My mother-in-law is currently undergoing chemo and radiation. She is having trouble swallowing. Is this causing permanant damage to her esophagus? They are telling us that it has spead through out her body. Primarily, the chemo and radiation is for pain management. She was just diagnosed 5 weeks ago. She has 4 tumors on her sping and 6 in her abdomin area. Any help would be aprreciated for what to expect.
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So, "aj77", from what you say about your mother-in-law's cancer it has already invaded her throat, spine and abdomen. You must ask the physician lots of questions. The trouble is for we layman. We have enough problem trying to spell the words, much less understand the severity of the diagnosis. This cancer is far more serious than my Esophageal Cancer Stage III. My condition was operable.

You need to ask the doctor if your mother-in-law's condition is operable. You need to ask what this chemo and radiation is going to accomplish. You have a lot of homework to do based on what I have gleaned from these reputable sites. The National Institute of Health can certainly be trusted! When I typed the words you used, Google asked: Did you mean "UNDIFFERENTIATED PLEOMORPHIC SARCOMA"?

So I take it that you were much like me when you typed out the diagnosis. I take it you mean "Pleomorphic Sarcoma". Well "AJ", don't feel bad. I had to ask my Gastroenterologist, "How do you spell "Esophageal". All I knew was that I had an Esophagus. All the things I have learned since then came from "a hiccup". That was my original symptom.

So, if you meant, "Undifferentiated Pleomorphic Sarcoma", the information I have been looking over certainly will be helpful for you. It gives you a starting point. I have no idea as to whether the doctors have told your mother-in-law that her condition is inoperable or operable. I don't know if they have said, "We have determined that your condition is not operable, and all we can do is provide you with chemo and radiation in the hopes that it will give you more quality of life".

Does your mother-in-law know more than she has told you? I have no way of knowing what your particular situation is. But I can see that you certainly need answers. It is my prayer that these references will be helpful. It is the most I can do for you. I do know this much--your mother-in-law is a very sick woman with a very serious diagnosis. You are doing the right thing to reach out and find answers.

When others on this site read of your posting, I know for certain that they will say a prayer for you, your wife, your mother-in-law and other family members. I pray that you will soon know all you need to know so that you can be certain she is getting the very best possible treatment. And as we always say, Have you had a second opinion? Do you have complete confidence in the physicians attending to your mother-in-law? I will tell you based on what you have told me, it makes me say once again, I thank God that I only had Esophageal Cancer Stage III. My cancer was contained within the Esophagus only and it was operable.

You have said that she is having a problem swallowing and you are wondering if her Esophagus is being permanently damaged. You will have to ask the doctors that question. I regret that none of us on this site would know how to answer that question, although "trouble swallowing" is often one of the indicators of Esophageal Cancer. Like I say, for me, it was only a hiccup.

So, "AJ", know that we can sympathize with you emotionally. We can pray for you. We are sorry to know of your mother-in-law's cancer. I have provided a multitude of info based on the word "Sarcoma". I do not know if this will be applicable to your mother-in-law's cancer. I sure hope it will be useful. If it doesn't apply, then it will not be helpful, but at least I wanted you to know that on this site, we care and help when we can.

William W. Marshall
AKA "William66"
Virginia Beach, VA 23464
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Info from here on has been gleaned from reputable Internet sites and is provided as a starting point for you "AJ77".I have looked up some of the words you use, such as "sarcoma". You have indicated that this cancer has been found in the throat, spine and abdomen. From what I have gleaned from just the word "Sarcoma", these are the findings.

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In this website--http://www.oncolink.org/resources/glossary_terms.cfm--I find the definition as

" sarcoma -- A cancer of the bone, cartilage, fat, muscle, blood vessels, or other connective or supportive tissue.

" stage IA soft tissue sarcoma

Cancer in which the cells look very much like normal cells. The cancer is smaller than 5 centimeters (about 2 inches) and has not spread to lymph nodes or other parts of the body.
stage IB soft tissue sarcoma
Cancer in which the cells look somewhat different from normal cells. The cancer is larger than 5 centimeters (about 2 inches) and has not spread to lymph nodes or other parts of the body. "
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stage IIA soft tissue sarcoma

The cancer cells look somewhat different from normal cells. The cancer is larger than 5 centimeters (about 2 inches) and has not spread to lymph nodes or other parts of the body.

stage IIB soft tissue sarcoma

The cancer cells look very different from normal cells. The cancer is smaller than 5 centimeters (about 2 inches) and has not spread to lymph nodes or other parts of the body.

stage IIC soft tissue sarcoma

The cancer cells look very different from normal cells. The cancer is larger than 5 centimeters (about 2 inches) and has not spread to lymph nodes or other parts of the body.
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stage III soft tissue sarcoma

The cancer cells look very different from normal cells. The cancer is larger than 5 centimeters (about 2 inches) but has not spread to lymph nodes or other parts of the body.
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stage IV soft tissue sarcoma

The cancer has spread to lymph nodes in the area or other parts of the body (such as the lungs, head, or neck).
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This is the website for Stage IV Soft Tissue Sarcoma "PROFESSIONAL" PDQ

http://www.cancer.gov/cancertopics/pdq/treatment/adult-soft-tissue-sarcoma/HealthProfessional
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This is the link for the "PATIENT" friendly site to know more about this.

http://www.cancer.gov/cancertopics/pdq/treatment/adult-soft-tissue-sarcoma/Patient

"... Adult soft tissue sarcoma is a disease in which malignant (cancer) cells form in the soft tissues of the body.

The soft tissues of the body include the muscles, tendons (bands of fiber that connect muscles to bones), fat, blood vessels, lymph vessels, nerves, and tissues around joints. Adult soft tissue sarcomas can form almost anywhere in the body, but are most common in the legs, abdomen, arms, and trunk.

There are many types of soft tissue sarcoma. One type that forms in the wall of the stomach, intestines, or rectum is called a gastrointestinal stromal tumor (GIST). The cells of each type of sarcoma look different under a microscope, based on the type of soft tissue in which the cancer began..."
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http://www.cancer.gov/cancertopics/pdq/treatment/adult-soft-tissue-sarcoma/Patient/page2_

http://www.cancer.gov/cancertopics/pdq/treatment/adult-soft-tissue-sarcoma/Patient/page2#Keypoint12

"... The process used to find out if cancer has spread within the soft tissue or to other parts of the body is called staging. Staging of soft tissue sarcoma is also based on the grade and size of the tumor, whether it is superficial (close to the skin's surface) or deep, and whether it has spread to the lymph nodes or other parts of the body. The information gathered from the staging process determines the stage of the disease. It is important to know the stage in order to plan treatment. ... There are three ways that cancer spreads in the body.

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The three ways that cancer spreads in the body are:

• Through tissue. Cancer invades the surrounding normal tissue.

• Through the lymph system. Cancer invades the lymph system and travels through the lymph vessels to other places in the body.

• Through the blood. Cancer invades the veins and capillaries and travels through the blood to other places in the body.

When cancer cells break away from the primary (original) tumor and travel through the lymph or blood to other places in the body, another (secondary) tumor may form. This process is called metastasis. The secondary (metastatic) tumor is the same type of cancer as the primary tumor. For example, if breast cancer spreads to the bones, the cancer cells in the bones are actually breast cancer cells. The disease is metastatic breast cancer, not bone cancer...
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Stage IV

In stage IV, the tumor is any size, any grade, and has spread to nearby lymph nodes or to other parts of the body."

_ Stage IV Adult Soft Tissue Sarcoma

Treatment of stage IV adult soft tissue sarcoma that involves lymph nodes may include the following:

• Surgery (wide local excision) with or without lymphadenectomy. Radiation therapy may also be given after surgery.

• Radiation therapy before and after surgery.

• A clinical trial of surgery followed by chemotherapy.

• A clinical trial of targeted therapy (Gleevec) for gastrointestinal stromal tumors.

Treatment of stage IV adult soft tissue sarcoma that involves internal organs of the body may include the following:

• Surgery (wide local excision).

• Surgery to remove as much of the tumor as possible, followed by radiation therapy.

• High-dose radiation therapy, with or without chemotherapy, for tumors that cannot be removed by surgery.

• Chemotherapy with 1 or more anticancer drugs, before surgery or as palliative therapy to relieve symptoms and improve the quality of life.

• A clinical trial of chemotherapy with or without stem cell transplant.

• A clinical trial of chemotherapy following surgery to remove cancer that has spread to the lungs.

• A clinical trial of targeted therapy (Gleevec) for gastrointestinal stromal tumors.

These treatments may be followed by surgery to remove lesions on the lungs.
Check for U.S. clinical trials from NCI's PDQ Cancer Clinical Trials Registry that are now accepting patients with stage IV adult soft tissue sarcoma. For more specific results, refine the search by using other search features, such as the location of the trial, the type of treatment, or the name of the drug. General information about clinical trials is available from the NCI Web site.

http://www.cancer.gov/cancertopics/pdq/treatment/adult-soft-tissue-sarcoma/Patient/page4_
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• There are different types of treatment for patients with adult soft tissue sarcoma.

• Three types of standard treatment are used:

• Surgery

• Radiation therapy

• Chemotherapy

• New types of treatment are being tested in clinical trials.

• High-dose chemotherapy with stem cell transplant

• Targeted therapy

• Patients may want to think about taking part in a clinical trial.

• Patients can enter clinical trials before, during, or after starting their cancer treatment.

• Follow-up tests may be needed.

There are different types of treatment for patients with adult soft tissue sarcoma.

Different types of treatments are available for patients with adult soft tissue sarcoma. Some treatments are standard (the currently used treatment), and some are being tested in clinical trials.

A treatment clinical trial is a research study meant to help improve current treatments or obtain information on new treatments for patients with cancer. When clinical trials show that a new treatment is better than the standard treatment, the new treatment may become the standard treatment. Patients may want to think about taking part in a clinical trial. Some clinical trials are open only to patients who have not started treatment.
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Three types of standard treatment are used:

Surgery

Surgery is the most common treatment for adult soft tissue sarcoma. For some soft-tissue sarcomas, removal of the tumor in surgery may be the only treatment needed. The following surgical procedures may be used:

• Mohs microsurgery: A procedure in which the tumor is cut from the skin in thin layers. During surgery, the edges of the tumor and each layer of tumor removed are viewed through a microscope to check for cancer cells. Layers continue to be removed until no more cancer cells are seen. This type of surgery removes as little normal tissue as possible and is often used where appearance is important, such as on the skin.

• Wide local excision: Removal of the tumor along with some normal tissue around it.

• Limb-sparing surgery: Removal of the tumor in an arm or leg without amputation, so the use and appearance of the limb is saved. Radiation therapy or chemotherapy may be given first to shrink the tumor. The tumor is then removed in a wide local excision. Tissue and bone that are removed may be replaced with a graft using tissue and bone taken from another part of the patient's body, or with an implant such as artificial bone.

• Amputation: Surgery to remove part or all of a limb or appendage, such as an arm or leg.

• Lymphadenectomy: Removal of the lymph nodes that contain cancer.

Radiation therapy or chemotherapy may be given before or after surgery to remove the tumor. When given before surgery, radiation therapy or chemotherapy will make the tumor smaller and reduce the amount of tissue that needs to be removed during surgery. Treatment given before surgery is called neoadjuvant therapy. When given after surgery, radiation therapy or chemotherapy will kill any remaining cancer cells. Treatment given after the surgery, to lower the risk that the cancer will come back, is called adjuvant therapy.
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Radiation therapy

Radiation therapy is a cancer treatment that uses high-energy x-rays or other types of radiation to kill cancer cells or keep them from growing. There are two types of radiation therapy. External radiation therapy uses a machine outside the body to send radiation toward the cancer. Internal radiation therapy uses a radioactive substance sealed in needles, seeds, wires, or catheters that are placed directly into or near the cancer. The way the radiation therapy is given depends on the type and stage of the cancer being treated.

Fast neutron radiation therapy is a type of high-energy external radiation therapy. A radiation therapy machine aims tiny, invisible particles, called neutrons, at the cancer cells to kill them. Fast neutron radiation therapy uses a higher-energy radiation than the x-ray type of radiation therapy. This allows the same amount of radiation to be given in fewer treatments.

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Chemotherapy

Chemotherapy is a cancer treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. When chemotherapy is taken by mouth or injected into a vein or muscle, the drugs enter the bloodstream and can reach cancer cells throughout the body (systemic chemotherapy). When chemotherapy is placed directly into the spinal column, an organ, or a body cavity such as the abdomen, the drugs mainly affect cancer cells in those areas (regional chemotherapy). The way the chemotherapy is given depends on the type and stage of the cancer being treated.
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New types of treatment are being tested in clinical trials.

This summary section describes treatments that are being studied in clinical trials. It may not mention every new treatment being studied. Information about clinical trials is available from the NCI Web site.
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High-dose chemotherapy with stem cell transplant

High-dose chemotherapy with stem cell transplant is a method of giving high doses of chemotherapy and replacing blood -forming cells destroyed by the cancer treatment. Stem cells (immature blood cells) are removed from the blood or bone marrow of the patient or a donor and are frozen and stored. After the chemotherapy is completed, the stored stem cells are thawed and given back to the patient through an infusion. These reinfused stem cells grow into (and restore) the body's blood cells.
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Targeted therapy

Targeted therapy is a type of treatment that uses drugs or other substances to find and attack specific cancer cells without harming normal cells. Imatinib (Gleevec) is a type of targeted therapy called a tyrosine kinase inhibitor. It finds and blocks an abnormal protein on cancer cells that causes them to divide and grow. Targeted therapy may be used for gastrointestinal stromal tumors that cannot be removed by surgery or that have spread to other parts of the body.
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Patients may want to think about taking part in a clinical trial.

For some patients, taking part in a clinical trial may be the best treatment choice. Clinical trials are part of the cancer research process. Clinical trials are done to find out if new cancer treatments are safe and effective or better than the standard treatment.
Many of today's standard treatments for cancer are based on earlier clinical trials. Patients who take part in a clinical trial may receive the standard treatment or be among the first to receive a new treatment.

Patients who take part in clinical trials also help improve the way cancer will be treated in the future. Even when clinical trials do not lead to effective new treatments, they often answer important questions and help move research forward.

Patients can enter clinical trials before, during, or after starting their cancer treatment.

Some clinical trials only include patients who have not yet received treatment. Other trials test treatments for patients whose cancer has not gotten better. There are also clinical trials that test new ways to stop cancer from recurring (coming back) or reduce the side effects of cancer treatment.

Clinical trials are taking place in many parts of the country. See the Treatment Options section that follows for links to current treatment clinical trials. These have been retrieved from NCI's clinical trials database.
Follow-up tests may be needed.

Some of the tests that were done to diagnose the cancer or to find out the stage of the cancer may be repeated. Some tests will be repeated in order to see how well the treatment is working. Decisions about whether to continue, change, or stop treatment may be based on the results of these tests. This is sometimes called re-staging.

Some of the tests will continue to be done from time to time after treatment has ended. The results of these tests can show if your condition has changed or if the cancer has recurred (come back). These tests are sometimes called follow-up tests or check-ups.