CANCER CRUSADERS MEET

MAX INSTITUTE OF CANCER CARE,

MAX SUPERSPECIALITY HOSPITAL, SHALIMAR BAGH

14 JULY 2016

For Max Institute of Cancer Care, Shalimar Bagh, 14 July 2016 was a great day. We had a fantastic “Cancer Crusaders meet” in Day care centre, in the basement. More than 300 people attended and the place was full of excitement, anticipation, victory, comradery felt as positive vibrations in the air by everyone in the premises. Everyone attended and participated wholeheartedly. There were two panel discussions – one on ‘Impact of body image during cancer treatment’ and second on ‘How much should a patient know about his/her disease, treatment etc’. The panelists were the cancer crusaders, caregivers and the consultants. The purpose was to discuss these two very important issues and have viewpoints of all stakeholders. The crusaders and caregivers were bold and expressed themselves with total clarity, and shared their experiences and with their enthusiastic participation along with the audience, both panels went on very well. Very important points were brought out by all the panelists.

In the first panel discussion on changes body image during cancer treatment the questions addressed were:

  1. What are the changes in body image during the treatment for cancers?
  2. How to tackle, cope and overcome these changes?
  3. What is the impact of these changes on mind and how to ignore them?
  4. What are the measures that can be done to prevent some of them and minimize the others?
  5. How to answer the questions of the people asking about them?
  6. What were the experiences of the cancer crusaders during their battle?

The conclusions were:

  1. A good and thorough understanding of the possible problems and preparation prior to commencement of the therapy is most important step in this direction.
  2. Good psychological preparedness with acceptance and great positivity can minimize the impact on mind and body. Discussions with oncologists, concerned persons will be of benefit.
  3. The body image changes are temporary due to chemotherapy, radiotherapy and are reversible. Examples are of hair loss, nail and skin changes etc.
  4. For hair loss, use of good wigs, caps, scarfs and shortening or shaving of scalp hair can be very useful. Positive feelings and talking to people around will be help a lot.
  5. Discussion about the breast surgery prior to the treatment and understanding the pros and cons of all options will help one to decide the best suitable option.
  6. The loss of an organ such as breast can be overcome with a prosthesis or reconstruction. A limb loss can be overcome by a prosthesis. Similarly, an arm with lymphedema can be least exposed by a well-tailored dress. Of course prevention and minimizing the lymphedema is the best option.
  7. The impact on the body image can be well taken care by a good psychological preparation with the help of a clinical psychologist.

Panelists shared their experiences and how they faced and coped with these challenges. This should give the patients going on with chemotherapy more confidence.

In the second panel the issue discussed was –“How much to inform the patients” about their cancer, stage, treatment, possible outcomes and expected lifespan.

Questions addressed were:

  1. Should the patient know about the diagnosis/ and to what extent? Nothing or Something or Everything?
  2. Who should discuss about the illness –doctor or the caregiver?
  3. How much should caregiver know about the illness?
  4. How to tell the patients about their illness?
  5. How to individualize the information sharing?

Conclusions were:

  1. It is important to inform the patient about the diagnosis. Caregiver must know about everything in totality.
  2. It may not be appropriate to inform the patient about the stage and the expected lifespan in complete details unless he/she wants to know.
  3. Keep the hope and positivity in the patients using the right words all the time.
  4. Personalize the information according to the individual. Literacy of the patient may matter to some extent but attitude matters the most.
  5. Oncologist himself should discuss with the patient and caregiver.
  6. Whenever a surgical procedure or serious procedure like Bone Marrow Transplant (BMT) is involved.

Important Highlight was Sister Shivani’s discourse on : “Power of mind in Healing. She brought out beautifully one simple fact relevant to one and all each us with or without problem. That is mind and body are separate. The illness affects body and not mind. So mind should stay calm and peaceful, while body is healing. Most of the problems are solved by acceptance of the problem.

After the lunch, there were well attended patient workshops on physiotherapy, nutrition, psychotherapy and body image. Patients wrote their feelings and pledges on the billboards kept in the lounge.  The message from this meeting was very loud and clear. There is a need for such meetings to discuss the issues not fully discussed in the clinic. This will go a long way to bridge the gap between patients and oncologists.

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