Sarcoma: Son died after leg amputation and chemotherapy

Pak X, an Indonesian from Medan came to seek our help. His wife had a big,cancerous lump in her breast. She refused surgery. I told them: “If you don’t go for surgery, I would not be able to help you.” Reluctantly the patient agreed to a mastectomy. However, she refused chemotherapy or radiotherapy.

One day, I asked Bapa X why he was so adamant about not wanting to go for chemotherapy. Listen to what he said:

 

 

Gist of what Pak X  said:

  • I don’t want chemo. This is based on my son’s bad experience. I now know chemo is not effective. My son was 16 years old when  he had a painful, reddish rash on his shin. This was later diagnosed as soft tissue sarcoma.
  • I brought my son to Guangzhou, China for treatment. They amputated his leg up to the thigh. Then they gave him chemo – 5 or 6 times (I am not sure now). We stayed in Guangzhou for about 6 months. The treatments were not effective.
  • I then brought my son to Beijing for further treatment using herbs. This was done in a hospital. We stayed in Beijing for about one and a half years. The treatment failed, the doctors surrendered.
  • I brought my son home to Medan. He died after 4 months. The cancer had spread to his lungs.
  • At least I was grateful that my son survived for one a half years with the herbs.

Chris: When you were in Guangzhou – they cut off his leg and gave him chemo – did you ever ask if the treatments were going to cure him?

Bapa: Yes, the doctor said the treatments can cure him.

C: When the treatments failed, did you ever ask the doctor again why he was not able to cure your son?

B: I did not ask that question. I just packed off and went to Beijing instead. We did not return to Guangzhou again.

C: In Beijing, did you ask the doctor if the herbal treatment was going to cure your son?

B: “Diusaha” (we’ll try our best).

C: How much did it cost you to undergo all those treatments?

B: I cannot remember now, but I have to sell a house to pay for the medical expenses.

(Bapa broke down in tears after this. This was not the first time Pak cried. Earlier, while taking a ride in our car to his apartment, he broke down  and cried when relating his son’s story. Now, it is his wife who has breast cancer and they refused chemotherapy or radiotherapy).

C: I am very sorry to bring this matter up. It stressed you a lot. Please don’t regret for what you have done. Don’t blame yourself. You have done your best. Also know that things like this happen to many people – having to sell their house or land to pay for medical expenses.

B: You asked me earlier why I did not want my wife to go for chemo. No, she is not going to do that. No chemo – anywhere! Property gone, life also gone after chemo, besides having to suffer. No. No to chemo. If we take herbs, life may go but at least there is no suffering!

Related stories:

Regretted for not giving mom chemo for her sarcoma

Chemotherapy for sarcoma: He died after 8 months

 

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Regretted for not giving mom chemo for her sarcoma

The husband of one breast cancer patient from Indonesia told us that he regretted for not subjecting his mother to chemotherapy after she had undergone surgery for her sarcoma. After the surgery, the cancer recurred and she had two more surgeries before she died.

I told this man, “You should not regret for not giving her the chemo. It is most likely that chemo would not be effective anyway.”

 

 

Review of Medical Literature on Sarcoma

Sarcoma is malignant tumor that can be divided into 2 groups:

1. Bone sarcomas, arising from bone or cartilage, and

2. Soft tissue sarcomas, arising from tissues such as fat, muscle, nerves and nerve sheath, blood vessels, and other connective tissues.

Soft tissue sarcomas are the most frequently occurring sarcomas. There are more than 50 different subtypes of soft tissue sarcoma. Some examples of soft tissue sarcoma:

  • Angiosarcoma arises from blood vessels
  • Kaposi’s sarcoma arises from blood vessels
  • Fibrosarcoma arises from fibrous tissue
  • Leiomyosarcoma arises from smooth muscle
  • Liposarcoma arises from fat
  • Malignant peripheral arises from nerve sheath tumor arises from Nerve tissue
  • Rhabdomyosarcoma arises from skeletal muscle.

Sarcomas are more common among children, accounting for 15% of pediatric cancers, but become less frequent with age, accounting for about 1% of all adult cancers.

They can occur anywhere in the body.  Around 60% of sarcomas develop in the arms or legs. The rest begin in the gastrointestinal tract (25%), the back of the abdominal cavity and its internal organs, called the retroperitoneum (15-20%), or the head and neck area (9%).

Treatment

1. Surgery

Surgery has been the preferred primary treatment for soft tissue sarcoma. The aim of surgery is to completely remove or excise the tumor. A border or margin of 2-3 cm of normal tissue around the tumor is also desirable to minimize the chance that tumor cells have been left behind.

Nonetheless, treatment with marginal surgery has been associated with local failure rates of 30 to 50 percent. Generally, small, low grade tumors can be treated with surgery alone.

2. Radiotherapy

The standard practice for the treatment of soft tissue sarcomas is radiotherapy in combination with surgical resection.

3. Chemotherapy

One of the major deterrents to adjuvant chemotherapy has been the difficulty in justifying exposure to the significant toxicities of these drugs for potentially non-responding patients.

Even in the best of circumstances, only 30 to 50 percent of patients with soft-tissue carcinomas will respond to standard chemotherapeutic regimen.

Systemic cytotoxic chemotherapy is generally not considered curative for patients with metastatic soft tissue sarcomas.

Treatment of patients with soft tissue sarcomas remains a challenge.

Recurrent Disease

There is always a possibility that a soft tissue sarcoma will recur.

Surgery may be possible if it is a limited recurrence.

It may be difficult to give additional radiation if the tumor recurs in an area that has already received maximum radiation in the past.

Chemotherapy is often offered.

Metastasis

The incidence of metastasis in high-grade soft-tissue sarcomas is 20 to  50 percent when the primary tumour diameter is greater than 5 cm.

Fifty percent of soft tissue sarcoma patients will die from distant metastasis.

One common site of metastasis (50 percent) is the lung, followed in frequency by liver, bone and to a lesser degree, skin.

Patients with retroperitoneal sarcomas had a greater tendency for local recurrence and disseminated disease throughout the abdomen.

Patients with head and neck and truncal sarcomas had a higher local recurrence rate than those with extremity sarcomas.

Prognosis

The overall relative 5-year survival rate of people with soft tissue sarcomas is around 50% according to statistics from the National Cancer Institute (NCI).

The 5-year survival rates for soft tissue sarcomas have not changed much for many years. The 5-year survival rates were:

  • 83% for localized sarcomas (56% of soft tissue sarcomas were localized when they were diagnosed)
  • 54% for regional stage sarcomas; (19% were in this stage)
  • 16% for sarcomas with distant spread (16% were in this stage)

References

http://sarcomaoncology.com/s_as_sarcoma.html

http://www.cancer.org/cancer/sarcoma-adultsofttissuecancer/detailedguide/sarcoma-adult-soft-tissue-cancer-survival-rates

I.J. Spiro et al. Soft tissue sarcoma (in Clinical Oncology, Ed. Philip Rubin. Health Science Asia, Elsevier Science).

A. Yasko et al. Sarcomas of soft tissue and bone (in Clinical Oncology. Ed. Raymond Lenhard, et al. Amer. Cancer Society).

Vernon Sondak & A. Chang. Clinical evaluation and treatment of soft tissue tumors (in Soft Tissue Tumours, Ed. Sharon Weiss and J. Goldblum, Heath Science Asia, Elsevier Science).