After radiation treatment for his NPC he had radiation-induced sarcoma 17 years later

The year 2018 started badly and sadly. I have many “sad” stories to share with you.

 

This is an e-mail I received on 1 January 2018.

Dear Dr Chris,

I know you are reluctant to take on emails with regards to consultations, but please at least hear my case first.

I was diagnosed with NPC in 1999, and gone through a course of radiotherapy in Melaka then.

In August last year (2017), I had a lump at the neck and had that lump surgically removed in early September in
Melaka. It turned out to be liposarcoma, as mentioned in the three attached histopathology reports.

Due to the involved margins, I was advised to go for a wider resection, and I did so at NCCS in late.

September 2017). The histopathology report from the second surgery, also attached, showed that the regions are clear. I have attached also the operation report from the second surgery for your reference.

Just a few days back, a CT scan showed that there is a recurrence at the neck near where the earlier tumor was. And for that, I will be travelling to Singapore tomorrow to consult the doctors again; I will most likely need a further surgery to remove the tumor, so said my doctor in Melaka too.

I guess you may well ask that I visit you personally, and that I almost certainly will after the second surgery when I regain my strength, but please at least let me know for now, if you may, the options/paths that are open to me. I have read the testimonies of sarcoma patients at your website, and they offer me glimpses of hope in these dark days of mine.
Thanks,   (p/s: Sorry for spoiling your new year with a mail like this)

I got to meet this patient end of January 2018.

Let me briefly outline what had happened.

  1. 1999 – diagnosed with nose cancer, NPC, Stage 3 and undergone 30 plus sessions of radiotherapy. No chemo.

Side effects of radiation: dry mouth, thyroid function deteriorated and right shoulder “dropped” down. Study the picture above. His right shoulder is lower than the left.

  1. Patient was okay.
  1. August 2017 — swelling in the right neck. It was malignant.

  1. Early September 2017 — did an operation in Melaka — margin was involved.

  1. End September 2017 — did second surgery in Singapore to remove a  wider margin.

6.   Mid-December 2017. Recurrence — a lump at the back of the neck.

  1. PET scan on 3 January 2018 confirmed nodal disease.

  1. January 2018 — third surgery was done. After surgery, the right cheek was swollen but is starting to get smaller.

 Total cost of the surgeries: About RM 200,000.

Lessons we can learn from this case 

  1. If you or your doctors think that you are done with your cancer, unfortunately cancer is not done with you yet. 

Many patients don’t want to hear or don’t want to know this — After undergoing all medical treatments you are often told you are cured. To those lucky ones, yes — it may be true especially when patients die first before experiencing any side effects or recurrence!

But if you live long enough, you may learn the sad truth that the cancer is not done with you yet. I have seen cancer comes back again even after 5, 10 or 14 years after an apparent “cure”.

  1. Radiation can cause new cancer down the road.

In this case, the patient had NPC in 1999 and in August 2017 the cancer came back again. Then there is an added dimension to his problem.  This is not a recurrence of this previous NPC but another new cancer — radiation-induced sarcoma.

Many patients are not told or are not aware that radiation itself is cancer causing. Many patients after chemotherapy and radiotherapy may end up with another medical-treatment-induced cancer such as leukemia, lymphoma and in this case sarcoma.

Patient had to undergo three operations over the past five months. I took some pictures below — indeed a tragic sight and indeed a sad morning for me.

  1. What can CA Care do to help? 

No, I cannot cure him. I have no magic bullet. But I hope to be able to help make his life a bit better. As it is now, he had difficulty swallowing as a result of the surgery. He can only take liquid food. If he drinks “pure” water he coughs. If there is something in the water, then it is okay. Mind boggling indeed. I only hope that our Oral Tea and Throat & Oesophagus Tea can help him in some ways.

In addition, movement appears to be difficult due to the tense muscles. There is no pain but the entire head and neck feel numb. He was put on the e-therapy as a trial. He felt “loosen up” — less muscular tension. I have a feeling that this etherapy would be useful for him.

If patients come to me earlier, before undergoing too much treatments, I guess I could do better. I recall having many patients with NPC. Some have undergone medical treatments mid-way and gave up. Some did not undergo any chemo or radiation. They took herbs and took care of their diet. They survived and did not suffer like this patient.

Well I guess, you think such good results are just fluke shots or these people are just lucky! I have learned early — For those who believe, they believe. For those who don’t want to believe, don’t waste time trying to convince them!

 

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