
The surveillance schedules below are offered as a guide.  <b>The SARCOMA ONCOLOGIST who is following you should be the actual expert on the most current and cost effective care for you, as are the NCCN guidelines &&url </b>  

Here are two statements made by sarcoma oncologists about surveillance, in response to the following questionnaire:

<b>Questions For Physicians </b>
On behalf of the many LMS survivors who were diagnosed at a medical institution
that did not have a sarcoma center, please answer the following questions
related to the guidelines for LMS medical follow up.  The questions are not
directed to chemotherapy and/or radiation therapy, as each treatment is
individualized.

<b>1. Immediately after surgery and/or treatment, what are the guidelines for (A)
CT Scans, (B) Bone Scans,  and (C) other tests?

2. Are scans/tests administered on a schedule or only when symptoms are present?

3. How do guidelines change after a period of years?

4. Is it ever safe to stop all scans/tests?  If yes, after how many years?</b>



<b> A Doctor at MD Anderson Answers </b>
Unfortunately, there are no clear guidelines (based on published data) available
to make specific recommendations for follow-up of sarcoma patients.  We have
published our follow-up strategy for extremity sarcoma recently in the Annals of
Surgical Oncology (Vol 5, pp 464-472, 1998 ).   A few generalizations are
possible:

1) Follow-up should be most frequent in the first 3 years after completion of treatment since 80% of those who recur will do so in the first 36 months.

2) Follow-up should continue longer than 5 years since perhaps as many as 10% of patients who have no sign of recurrence at 5 years will recur between the 6 and 10th post-treatment years.

3) We don't know if patients should be followed longer than 10 years.

4) Chest X-ray at regular intervals (every 3 to 6 months during the first 3 years) is a reasonable strategy for detection of lung metastases.   There is no evidence that earlier detection of lung metastases using more sensitive and expensive techniques like serial CT scans of the chest is helpful.

5) Imaging of the primary tumor site for detection of local recurrence is dependent on anatomic site.  Our strategy for extremity tumors is detailed in the above reference and utilizes physical exam with high quality ultrasound (with one post treatment MRI).  For tumors of the thorax, intraabdominal sarcomas, retroperitoneal sarcomas, and pelvic sarcomas serial CT scanning is optimal because physical examination is unreliable for detection of early recurrence in these sites.  The optimal frequency of CT scanning is not known.  Given the high risk for recurrence of many (but not all) sarcomas in these sites, it may be optimal to repeat CT scans frequently in the first 3 post-treatment years - perhaps as often as every 3 to 6 months.

6) Bone scans are not usually indicated for any form of follow-up or initial staging unless there is new bone pain or other bone symptoms.

7) Routine blood tests are of no benefit in long-term follow-up.

Exceptions to this would include follow-up of blood counts previously noted to be abnormal secondary to chemotherapy and/or a BUN and creatinine blood test to confirm normal kidney function prior to contrast enhanced CT scans.



<b> A Doctor at Dana Farber Answers </b>
<b>1. Immediately after surgery and/or treatment, what are the guidelines for (A)
CT Scans, (B) Bone Scans,  and (C) other tests?</b>

ANSWER:
This really depends upon the grade, size, and histology of the tumor -- in brief the "risk factors" for recurrence should drive subsequent testing and surveillance.

One national group, called the NCCN, recently published a set of practice guidelines for sarcoma that are based on consensus -- as imperfect as these may be -- and they are in continual refinement and revision.  These help to provide some structure and guidance to care.

But thee is no substitute for getting expert advice at a center at least to help the local docs plan how to implement subsequent care.

One important point -- routine blood testing has very little, if any, role in follow-up screening and surveillance.  The roles of CT, MRI, and bone scanning are more controversial, with some centers tending to use these scans a lot in order to detect any recurrences early and be able to intervene more effectively with minimal disease size.

There have been no randomized studies to show how frequently scans should be done...


<b>2. Are scans/tests administered on a schedule or only when symptoms are present?</b>

ANSWER:
See above.  Certainly, symptoms should trigger surveillance and evaluation in detail with a low threshold.


<b>3. How do guidelines change after a period of years?</b>

ANSWER:
We tend to stretch out the intervals between scans -- often this is judged as reasonable to perform surveillance scanning, say, every 3 months for 3 years, then if no recurrence, stretch it out ot every 6 months for a few years, then every year.  But clearly this is based more on practice patterns than on actual data showing that this is the "right" thing to do.


4. <b>Is it ever safe to stop all scans/tests?  If yes, after how many years?</b>

ANSWER:
Excellent question -- and the answer is probably dependent on the type of sarcoma.  For low grade disease, if no recurrence after 10 years, if the primary were small, it might indeed be reasonable -- but for higher grade or very large primary lesions, this might be ill advised.  This too is a matter more of opinion and practice pattern difference than of data.



<b>General Health Care Surveillance</b>
Seven and a half percent of people with LMS will develop a second, different, primary cancer.
Mammograms, breast and/or testicular self exams, stool for occult blood, physical exams, and various blood tests are necessary screeners.


<b>Routine Surveillance Against LMS Recurrence</b>
Leiomyosarcoma has an alarming tendency to return either locally or as a metastasis or both.  Surveillance is necessary so as to identify recurrences when they are small and surgically resectable.  What is done for surveillance, and for how long, may depend very much on the primary site of the LMS, as well as the country of residence of the patient.  Generally surveillance is more frequent, usually every 3 months, in the first two years, when most of the recurrences appear, becoming less frequent in the subsequent three years [every 6 months], and then remaining yearly.  Of course, if there is abnormality, the appropriate scans would be used. If disease becomes active, and is treated, surveillance reverts to the pattern of the first two years.

<b>The surveillance patterns on this web page are for high grade tumors.</b>

"It is most important that new list members know that they should be scanned routinely and over their full body. I had no scans until I had a chest X-ray 11 yrs after my hyst and discovered mets in both lungs.  I had NO pelvic or abdominal scans until last year. They thought I was cured after not having a recurrence for 11 yrs. Ha! Do I fool everyone who knows my history?  I had a recurrence to the primary area after 19 yrs. If I had pelvic scans all along, even at intervals of 1 yr, it would have been discovered when it was smaller and not almost 7 cm."

"I had to insist on abdominal scans because I have problems with my stomach and intestines. I had to argue that I needed it. Speak up and be assertive with your doctors. It is important and it is your life that you may be saving. Early detection is important. It determines your treatment."
 
"The value of surveillance for detection of recurrences in patients with soft tissue sarcoma (STS) after definitive surgical resection of the primary tumor is based on the premise that early recognition and treatment of local or distant recurrence can prolong survival. Surveillance strategies should meet the criteria of easy implementation, accuracy, and cost-effectiveness. Although guidelines have been proposed for follow-up of patients with STS, there are few data in the medical literature on the effectiveness of these recommendations. The role of specific surveillance strategies for recurrence detection for sarcomas of the trunk, head and neck, retroperitoneum, and viscera has yet to be defined." Semin. Surg. Oncol. 17:83-87, 1999

Personal Examination
Once a person has lung metastases, it is possible that metastases will develop peripherally as well.  It might be useful to feel for lumps in areas not routinely scanned  [scalp, skin, breasts, tongue, extremities, neck].  


