Metastatic Rhabdomyosarcoma: Surgery, Radiation and Chemotherapy Did NOT Cure Her

Tia is a 56-year-old lady from Indonesia. Sometime in October 2013, she felt a lump in her right groin. Tia underwent an operation to remove the mass. The doctor said it was a tumour (did not mention the word cancer!). Nevertheless, Tia was asked to undergo chemotherapy and was referred to a cancer hospital in Jakarta. However, the family decided that Tia come to Penang insted, for further treatment.

CT scan 5 March 2014

  1. Irregular soft tissue lesion at right inguinal region which could represent sarcoma.
  2. Well-defined soft tissue at right lower lobe adjacent to the right heart border.
  3. Ill-defined hypodense lesions seen at segment 6, 7 and 8 of liver.
  4. Multiple small mesentary lymph nodes at right iliac fossa.
  5. Small uterine fibroid. 

In a private hospital in Penang, Tia underwent a second operation since the doctor said the first surgery did not remove all the mass. After surgery, Tia had 30 sessions of radiotherapy and 6 cycles of chemotherapy, given as 12 injections.

Unfortunately the CT scan revealed that chemotherapy was not effective. Tia received another 3 more cycles of chemotherapy. Again, the treatment was not effective.

Date Chemo drugs
22 April 2014  

 

Intaxel + Gemita

29 April 2014
13 May 2014
20 May 2014
11 June 2014
11 June 2014
16 June 2014
30 June 2014
21 July 2014  

Andriamycin + Ifosfamide

Mesna

11 August 2014
18 August 2014
10  Sep. 2014
11 Sept. 2014
7 October 2014
8 October 2014

The cancer had spread to her lung and liver.

CT scan 8 July 2014

  1. Multiple nodes at both lungs fields which could represent metastatic lung disease.
  2. Bilateral nodular goiters.
  3. Ill-defined hypodense masses seen at the liver, which would represent metastatic disease.
  4. Subcutaneos nodule seen at the right lumbar region and adjacent to right iliac crest, which could represent metastatic nodules.

Impression: Metastatic lung nodules demonstrate progressive increase in size. The metabolic liver lesion is significantly large in size.

The oncologist told Tia to “Go home and wait. Come back again in February 2015 for routine checkup.” Unfortunately by December 2014, Tia developed severe pains in her abdomen.

A CT scan on 6 December 2014 in Indonesia indicated: “Progresive mass metastase pada hepar dan nodul pada paru kiri.” (Progression of liver metastasis in both liver and lung). The largest nodule in the liver was 16. x 9.7 cm.

Tia composite

In January 2015, Tia and her husband came to seek our help. They have decided to give up further  medical treatment.

Listen to her story.

Video 1:  Surgery, radiation and chemo did not cure.

 

Video 2: She came to CA Care after all medical treatments failed.

 

 

Here is the gist of our conversation that day.

Chris: You did two surgeries – before the surgery, did you ever ask if this is going to cure you?

Patient: My hope was to get a cure.

C: Everyone who comes to us also want to a cure. That is normal – expected. But my question is, did you ever ask the doctor if surgery can cure your cancer? Did you ask that question?

P: No, I did not ask. From my understanding if I undergo the surgery, I would be cured!

C: This assumption is not correct!

P: Yes, now it seems it is not correct!

C: You also had chemo – spent a lot of money on that – did you ever ask if chemotherapy was going to cure your cancer?

P: No, I did not ask.

C: See, these are two important questions I often tell patients to ask their doctors before undergoing such treatments. Now, if you were told that these treatments would not cure you, would you go through all these?

P: We have to “berusaha” (meaning, try our best).

C: Okay, “berusaha” or trying your best. Did you ever ask if by trying your best, what is the chance of you getting good result? If the chance is zero (like now) would you have gone through all these?

P: No. But doctor would not want to say such a thing. They say, let’s try and see.

C: Who ask you to come and see us?

P: Sari told me about CA Care four months ago.

C: You knew about us four months ago but did not come and see us. Why wait until now?

P: I had not completed my medical treatment yet.

C: So I now understand. You have done all the medical treatments and failed. They gave up and you come here. Yes, I understand. There are some patients who come after they have spent all their money – no more money to pay their medical bills – then they come to us!

You cancer has spread all over and went to the liver and lung. What do you expect me to do for you? Cure you? That’s impossible.

P: No, just to reduce my difficulties and hopefully also prolong my life a bit. But more important now is to lessen my burden – pain – that I am experiencing now.

C: I understand, but please don’t expect me to cure you! My experience – no human being on earth can cure your cancer. But if you ask me to help you a bit, may be that is possible. And to prolong life? That is only possible with God, I cannot promise you that.

Health is your responsibility. They don’t teach you how to become well. Go home and eat anything you like – that’s wrong. You have to take care of your diet. Please read these books, Food and Cancer and  Healthy Cooking. These can help you. Remember, cancer patients just cannot eat anything they like.

The herbs I am prescribing you are not nice to take – they are bitter and have awful smell. You need to boil them and then drink.

Also after taking the herbs, you may experience “healing crisis” – you may have more pain, diarrhea, etc. Meaning you may feel worse off. Don’t worry, continue taking the herbs and hopefully these will go away after a week or two.

Take the herbs for a month or two. If you don’t get better then you stop taking the herbs. Go and find someone to help you.

Next posting: What you need to know about Rhabdomyosaaracoma

 

 

 

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What you need to know about Rhabdomyosarcoma

Rhabdomyosarcoma (RMS) is a cancerous tumor of the muscles that are attached to the bones. It can occur in almost any part the body. Although these tumors can arise almost anywhere, the most common locations for these tumors to develop are in the structures of the head and neck (nearly 40% of all cases), the male or female genitourinary tract (about 25% of all cases), and the extremities —  arms or legs and trunk (chest and abdomen), (about 20% of all cases).

RMS is the most common soft tissue tumor in children, especially those under 15 years of age. It is also the most common soft tissue sarcomas of adolescents and young adults. It is rare in persons older than 45 years.

Not very much is known about why normal skeletal muscle cells become cancerous. RMS is a very rare cancer. There are only about 350 cases of RMS diagnosed each year in the United States in children under the age of 21 years.

Rhabdomyosarcoma is very uncommon in adults. Adults are more likely to have faster-growing types of RMS and to have them in parts of the body that are harder to treat. Because of this, RMS in adults is often harder to treat effectively.

Symptoms

Symptoms of adult soft tissue sarcoma may not be noticeable until the cancer has gone past its early stages. The first sign is usually a mass or a swollen lump. The mass may or may not be painful.  If the tumor affects muscles or nerves, it may be painful, but this usually is not the case. Other symptoms may vary depending on where the tumor develops. It may cause bloody stool or abdominal pain if it develops in the abdomen area.

Tumors that arise in the legs or arms are usually amongst the most aggressive types of RMS. These tumors may grow from the size of a mosquito bite or a small marble to the size of a baseball or grapefruit in the course of only a few weeks. The tumors are usually hard, but only rarely are they painful unless they start pressing on nearby nerves.

Treatment

Often in young people and children chemotherapy is given first to try and shrink the tumour, before surgery. If all of the tumour is destroyed by chemo, then there may be follow-up radiotherapy.

Surgery: The aim of surgery is to remove the tumour. Sometimes, because of the type of tumour it can often be difficult to remove. It depends on where the rhabdomyosarcoma is as to the details of the operation. If the sarcoma is on the legs or arms, sometimes some of the bone will have to be removed. Either a prosthesis (a metal replacement bone), or a bone graft (bone taken from another part of the body) will be inserted to replace what is missing. This is known as limb-sparing surgery.

Unfortunately because of the location of the tumour, sometimes limb-sparing surgery doesn’t work and a limb might have to be amputated.

Surgical resection with negative margins remains the standard primary treatment. But adequate margins are often difficult to obtain. Consequently, recurrent disease and systemic relapse remain a significant problem.

The role of surgery in the management of patients with RMS is clearly site-specific. Superior outcome has been suggested when initial complete, gross total, or even debulking surgery is performed for patients with unfavorable site tumors.

It is important to remember that surgery by itself is never curative. It is also important to remember that the role of surgery is very dependent on the site of the tumor. Initial complete surgical removal of tumors arising in an extremity or in the pelvis may help improve the chance of cure.

Radiotherapy: This is often given to people with larger rhabdomyosarcomas. It can be given after surgery to ensure that any remaining cancer cells are destroyed. Sometimes it is given before surgery, to try and shrink the tumour and make the surgery easier. Whether you have radiotherapy before or after surgery depends on your individual case.

Radiotherapy  is done  to maximize the chance for cure.

Chemotherapy: Chemotherapy is often given to people with rhabdomyosarcoma to shrink the tumour prior to surgery. This is called neo-adjuvant treatment (chemo before surgery) and usually means that the surgery will be less invasive because the tumour is smaller.

Alternatively, chemo might be given after surgery to kill any remaining cancer cells and stop them from spreading. This is called adjuvant chemotherapy (chemo after surgery).

All patients with RMS require chemotherapy to maximize the chance for cure. Example of drugs are:  Vincristine, Dactinomycin, Cyclophosphamide, Topotecan, Irinotecan, Etoposide, Ifosfamide, Doxorubicin, Carboplatin.

Late Effects of Treatment

Individual chemotherapy agents may have unique toxicities that may not become manifest until many years after the end of therapy, or that may steadily worsen with increased length of follow-up.

Damage from radiation therapy, and late complications from surgery, may not become apparent for many years. The long-term side effects of treatment are:

  1. Infertility(associated especially with the use of alkylating agents such as cyclophosphamide and ifosfamide).
  2. Bladder dysfunction: Although “non-mutilating” conservative surgery and full-dose irradiation has become the treatment of choice for bladder preservation in children with bladder/prostate RMS, approximately half of children with “intact” bladders will have one or more symptoms of bladder dysfunction including dribbling, incontinence, and enuresis.
  3. Radiation damage of head and neck structures: Well described complications of radiation include cataract formation,  asymmetric facial growth as a result of permanently arrested bone development and fibrosis (“scarring”) of surrounding tissues; chronic sinus infections; growth failure due to pituitary damage; and complex and multiple dental abnormalities.
  4. Secondary cancer: Perhaps the most devastating late complication of treatment for any type of cancer, not just RMS, is the development of a second form of cancer. The use of chemotherapy and radiation can cause second cancers to develop. Chemotherapy-associated secondary cancers are most commonly leukemias (typically Acute Myeloid Leukemia [AML]), and may be associated with the use of alkylating agents (cyclophosphamide and ifosfamide), and topoisomerase II inhibitors (etoposide and doxorubicin).
  5. Radiation is also associated with the development of second cancers, most commonly other sarcomas (either in bone or soft tissue). At the doses of radiation that are currently used to treat children with RMS, the risk of secondary sarcomas is approximately 5% at 20 years. Unlike the situation with secondary leukemias, which typically develop within four years of treatment, most cases of secondary sarcomas do not develop until 5+ years after the end of treatment.

Recurrence & Metastasis

Post-relapse survival for the majority of patients with recurrent RMS remains dismal. 95% of recurrences occur within three years of diagnosis.

Metastases develop during the course of the disease or, in about 20% of cases, are present at diagnosis.

Major metastatic sites are the lung, lymph nodes and bone marrow followed by the heart, brain, meninges, pancreas, liver and kidney.

The lungs are involved in at least two-thirds of patients with metastasis.

Source

http://www.cancer.org/cancer/rhabdomyosarcoma/detailedguide/rhabdomyosarcoma-what-is-rhabdomyosarcoma

http://www.nlm.nih.gov/medlineplus/ency/article/001429.htm

http://sarcomahelp.org/rhabdomyosarcoma.html

http://www.sharecare.com/health/soft-tissue-sarcoma-adult/what-symptoms-adult-soft-tissue

https://nowwhat.org.au/about-cancer/cancer-types/soft-tissue-sarcomas/rhabdomyosarcoma/

Soft Tissue – Chapter 22: Rhabdomyosarcoma  by Sharon Weiss & John Goldblum

 

When I made a google search on “Can rhabdomyosarcoma be cured?” or “Effectiveness of treatment of rhadomyosarcoma” these are the pathetic answers I got.

  • Unfortunately, there is no guaranteed cure for rhabdomyosarcoma. However, treatment can be very effective, especially if the cancer is caught early. The most effective treatment usually includes surgical removal of the tumor and some surrounding tissue, followed by another treatment — usually chemotherapy or radiation therapy — to kill any cancer cells that may be left after surgery. http://www.sharecare.com/health/soft-tissue-sarcoma-adult/what-symptoms-adult-soft-tissue
  • When discussing cancer survival statistics, doctors often use a number called the5-year survival rate. The 5-year survival rate refers to the percentage of patients who live at least 5 years after their cancer is diagnosed. If the cancer has spread widely, the 5-year survival rate is generally around 20% to 40%.  http://www.cancer.org/cancer/rhabdomyosarcoma/detailedguide/rhabdomyosarcoma-staging-survival-rates
  • In patients with localised disease, overall 5-year survival rates have improved to more than 80% with the combined use of surgery, radiotherapy and chemotherapy. However, there has been little progress in managing metastatic disease with a 5-year event-free survival rate less than 30%. http://www.patient.co.uk/doctor/Rhabdomyosarcoma

Related posting:  Metastatic Rhabdomyosarcoma: Surgery, radiation and chemotherapy did not cure her.