In short
- All three were first told the tumour was benign. The diagnosis came only after surgery.
- In all three the tumour could not be fully removed or it came back. Chemotherapy plus radiotherapy kept the disease under control in every case.
- Two are now almost three years past their diagnosis, the third more than a year.
- One of the three lives with reduced heart function.
- These are three courses told by the patients themselves. They are not a study.
If this is your situation
You were operated for a tumour in the heart that was thought to be benign. Afterwards the pathology said intimal sarcoma, and the surgeon could not remove all of it. Or it was removed and came back. Three people in our patient group have been exactly there. This is what happened next.
What all three had in common
The tumour was in the left atrium. All three were first told it was benign. The diagnosis came only after surgery. Two were then referred to a sarcoma centre.
The three courses
Patient A
Tumour not completely removed. Six cycles of chemotherapy, then 27 sessions of radiotherapy. The remaining tumour shrank clearly after radiotherapy and has been stable since, almost three years after diagnosis. Back at work.
Patient B
Tumour not completely removed. Six cycles of chemotherapy with 30 sessions of radiotherapy in between. Tumour-free at the end of treatment and at two follow-ups. Her heart function is reduced, which her doctors link to the surgery and the radiotherapy. She says she is doing well after rehab.
Patient C
Tumour came back eight months after surgery and could not be operated again. Chemotherapy stopped the growth. Radiotherapy then reduced the tumour by a third. Stable for more than a year since, almost three years after diagnosis, with a normal daily life. Her tumour was described as low grade, which is unusual for this disease.
| Patient | After surgery | Treatment | Today |
|---|---|---|---|
| A | Tumour not completely removed | 6 cycles of chemotherapy, then 27 sessions of radiotherapy | Remaining tumour smaller and stable, almost 3 years after diagnosis |
| B | Tumour not completely removed | 6 cycles of chemotherapy with 30 sessions of radiotherapy in between | Tumour-free at two follow-ups, more than a year after diagnosis; reduced heart function |
| C | Came back after 8 months, not operable | Chemotherapy, then radiotherapy | Tumour a third smaller and stable, almost 3 years after diagnosis |
What we learned
- An incomplete operation is not the end of treatment. Chemotherapy plus radiotherapy kept the disease under control in all three. Two are now almost three years past their diagnosis, the third more than a year.
- Radiotherapy can still work when the tumour comes back and cannot be operated. In one case it reduced the tumour by a third.
- Treatment of the heart has a price. One of the three lives with reduced heart function.
How this compares with published figures
Published series on heart sarcomas report a median survival of about a year and a half. In the largest recent one, 61 patients with heart sarcomas of all types from six hospitals, the median survival was 17.5 months. Only 5 of the 61 tumours could be removed completely, and 7 patients (11%) lived longer than three years.1
Three courses are not a study, but they show what is possible.
What this does not show
These are three courses, told by the patients themselves, not reviewed by a doctor. We do not yet know the radiation doses. Chemotherapy was given as well, so the effects of the two cannot be fully separated. One tumour was low grade, so its slow course may be due to the tumour itself and not only to the treatment.
People who are doing well are also more likely to find a patient group and to tell their story. Read these courses as "this has happened", not as "this is what to expect".
Questions for your doctor
- Is radiotherapy an option for me, now or if the tumour comes back?
- Has my case been discussed at a sarcoma reference centre?
- How will my heart function be checked during and after treatment?
- Was my tumour tested for MDM2 and CDK4, and can I get the report?
More on these points: treatment options, what has been tried at recurrence, second opinion and sarcoma centres and reading your pathology report.
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No long message needed. One line is enough, or nothing at all: we will write to you first, usually within a few days. There is also a small private group of patients and relatives; ask us and we will invite you.
Sources
- Chen TW, Loong HH, Srikanthan A, et al. Primary cardiac sarcomas: A multi-national retrospective review. Cancer Medicine 2019;8(1):104–110. doi:10.1002/cam4.1897.
- The three courses: reported by the patients themselves in the patient group of the Intimal Sarcoma Initiative, October 2026. Each patient read the paragraph about their own course and agreed to its publication.