Neeta Vyas is a senior physiotherapist who had breast cancer and now specialises in post-cancer rehabilitation. She talks about her breast cancer and how she dealt with it and what keeps her going.
When were you first diagnosed with the cancer and what were the symptoms that made you visit a doctor?
In 2017, when I was 58 years old, I had a prickling sensation in my breast. My gynecologist friend told me to get a mammogram done. I agreed but took it very lightly and went for it only a month and a half later.
The doctor who did the mammogram and sonography casually mentioned that there was a lump in my breast but said it was not anything to be concerned about. I read the report out to her and told her that it mentioned lymphedema. She said it is lymphangitis which is normal, and I need not worry about it.
I took her at her word and let things be. The report was just lying in the car. After a month the prickling sensation started. I decided to meet a surgeon friend who worked in the same hospital as me. This was in April 2017. I gave her my mammography film and she was taken aback when she saw the lump on the mammogram. She was surprised that the other doctor had said there was nothing to worry about. She took me immediately for another mammogram and sonography test in the radiology department of the same hospital. It confirmed the cancer, but we did not know the stage.
What was your reaction to the news and how did your family take it?
I was scared for a few minutes. My friend had informed my husband by the time I reached home. We decided to meet a cardiologist friend whose wife also had cancer who directed us to an oncologist.
How did the treatment begin after that?
Things moved very fast once we met the doctor. He palpated the area and confirmed it was a carcinoma and might be stage 2. He asked me if we could do a biopsy immediately. I agreed. The biopsy showed the malignancy. It was diagnosed as ductal carcinoma, second stage. We got the pre-operative assessments done immediately. We met him on Thursday and the lumpectomy was done on Saturday April 8, 2017. They also removed 24 lymph nodes in the surgery.
The doctor told me we would start the chemotherapy and radiation after three weeks once the sutures were removed.
While we were waiting, we met a well-known doctor at Tata Memorial in Mumbai who confirmed that I should go ahead with the chemotherapy and radiation therapy. He added that I had five years to live after which there was no guarantee. He advised me to relax and enjoy my life.
How did you react to that prognosis?
I was a bit depressed when I heard these words. My husband was with me when the doctor said this. He kept a very positive outlook and I took my cue from him. He told me not to worry and reassured me that nothing was going to happen to me. I was ok after that and ready to deal with the cancer.
How did the treatment proceed?
After the surgery I had 8 chemotherapy sessions followed by 32 radiation sessions. The chemos were at an interval of 15 days each so it took 4 months to complete. The 32 radiation sessions were daily from Monday to Friday with the weekends off.
Post the treatment I started with hormone therapy in September 2017, which is ongoing right now.
What side effects have you have been facing?
I had some complications during my chemo. I used to get some rashes and high-grade fever that used to go up to 103 degrees. I had terrible blisters as well under the breast area where I had the radiation. I could not get out of bed.
I had ulcers in my mouth and nausea as well. It was difficult to eat but my husband and daughter would get me what I loved, and they would coax and cajole me like a small child to eat my food so that I got my nutrition. I am glad I finished all my treatments in a timely manner.
I started getting hair loss on the third day after I started chemotherapy, so my husband and I decided to just shave it off rather than see it fall every day. I then got a large variety of scarves for myself and used to wear different ones each time I went out.
I developed neuropathy in my hands and feet. I have been doing physiotherapy for it and it is better now but I still have tingling and numbness in my fingers which flares up a lot at times. I can’t do a lot of things I could before. For example I can’t type or write for long, so I use voice messaging. In the kitchen, I just hold everything with both hands. I have done some ergonomic modifications in my home to make my daily life easier. For example, I have put handles on all my vessels so that I can hold them easily and do not need to use the ‘pakkad’ for holding hot vessels. At the workplace I use thick pens which give me a better grip as I cannot hold thin pens and write.
Can you share some of the exercises that you do for neuropathy?
I rub the tips of my fingers together. I use the round plastic scrubbers used for cleaning utensils to increase sensory stimulation by rubbing them on the palms and soles of my feet.
I have plantar neuropathy in my feet. I feel like sometimes I'm walking on rocks and sometimes on cotton. I know that these things are part of my life now and I have to live with them. I approach my life with positivity and do everything I want to and stay active.
Did you have a family history of cancer?
I found out after my cancer diagnosis that my grandmother had a brain tumour . Recently my younger sister was diagnosed with breast cancer.
We all have done genome testing. I am not BRCA positive. It is very important to do this test as a preventive measure.
Is there any other medication you are on? Any diet changes?
Yes.Apart from the hormone therapy I am on medication for hypertension. I also take multivitamins.
I have changed my lifestyle and diet. I eat red coloured fruits like pomegranate and prickly pear. I eat dry fruits and lots of vegetables. I have stopped eating wheat and replaced it with grains like jowar and bajri. I don’t eat sugar. Sometimes I eat some fried thing as a treat.
What is your fitness regime like?
I walk regularly, do all my shoulder exercises and practice deep breathing. This exercise regime takes me 10 minutes in the morning. I started these exercises on the second day post the surgery and do them daily even now.
Deep breathing is very important for patients since it is diaphragmatic breathing. It helps the patient's lymphatic systems to be very active. If a breast cancer survivor, does it regularly along with the other lymphedema exercises it can prevent the lymphedema occurring in the arm. I do deep breathing whenever I get time in the day. Even 5-6 deep breaths are beneficial.
I am physically very active. At home there is a lot of walking between the rooms. When I reach my college I get down at the entrance and walk to my college. That is a seven minute walk. As far as possible I don't take lifts. I prefer to climb the staircase everywhere I go. I try to make adjustments to my lifestyle and stay as active as possible.
I recently read two articles that said that if you do these exercises regularly, they will prevent secondary cancers that can develop post the primary cancers. So regular exercise and a good diet are both essential for good health.
What was your support system like during your cancer treatment?
Only my immediate family knew about my cancer. My husband and grown-up daughter looked after me primarily. My sister-in-law took my in-laws to stay with her. They are very attached to me, and she knew that seeing me go through the treatment would make them worried and anxious.
My elder brother would send me fruits and all the foods I enjoyed so that I ate well. He would call me every day and chat with me. My daughter would cook my favourite food and get for me.
One of my colleagues would sit with me when my chemo was going on. Sometimes my brother used to come with me if my husband was not free. They would all bring me some snacks and juices.
Your family gave you a lot of emotional and mental support. What was your own mindset?
I had a lot of mood swings. I used to cry sometimes. I felt like I couldn't deal with it. I was not able to tell anyone how I was feeling inside me.
My immunity was low, and I could not leave the room so as to prevent infections. It used to make me feel very lonely. My husband who is a senior and renowned pediatrician decided that he would set aside his practice and all his other commitments and be with me 24X7. He said to me that I was everything to him and he would only go back to work once the treatment was totally over. This gave me a tremendous boost and I felt that with such strong support I could fight this disease.
Can you tell us a bit more about your work? When did you resume work post the treatment?
I resumed work in July 2018, eight months after I recovered. I would have returned to work earlier but I was not allowed because my immunity was low, and I used to get fevers. I was unable to dress comfortably enough to go out due to the blisters from the radiation and that delayed my plans to get back to work as well.
I was the principal of a leading physiotherapy college. When I retired from there the government asked me to start a new course in a kidney Institute for transplant rehabilitation. So I started working with them. As per government rules I had to retire at the age of age 62. In my career I have had a role to play in nearly 40 colleges of physiotherapy in Gujarat.
After my retirement I had a red carpet invite from all these colleges eager for me to join them. But when I got the cancer and the associated side effects, my husband and I decided that I would give up working full time.
But the colleges were keen to have me there. So, I decided to work with their postgraduate and PhD students and be a part of their advisory committee. I am attached to many modes of studies and academic councils and institutes. I'm a PhD guide in two universities.
I was operated at the HCG hospital for my cancer. When I was there I realised that what we were teaching our students in physiotherapy was not the right thing. So I studied post-cancer physiotherapy programs for cancer online from the USA. I became a lymphedema therapist and I'm doing cancer rehabilitation and counselling. I have tailor-made exercise programs for each patient since everybody doesn't have the same complaints.
Do you counsel the patients who come to you for physiotherapy??
Yes, I have counselled quite a few couples. Many times, the husbands are in a dilemma. There are men like my husband, who are very supportive. But there are a few husbands whose attitude makes me angry. They ask me how they can get sexual satisfaction if their wife has had a total mastectomy. Many times they ask me this question in front of the wife without considering the impact of this question on her in her vulnerable state. This question gets asked by younger couples and they need to be counselled. I explained to them that sexual satisfaction is not the only part of your life. There are many ways in which you can have closeness and intimacy with your spouse.
Some of my patients feel very depressed with the loss of hair. I tell them to wear different type of scarves and earrings so that they look beautiful. I tell them to fulfil all their inner desires for dressing up at this point.
How do you handle the fear of recurrence?
Initially I did not fear recurrence of the cancer or facing death. I believe that everything including our birth and death, is managed by God.
A dear friend passed away suddenly from secondary cancer and my fear of a recurrence surfaced. I came to know later that she had stopped her medication. My husband consoled me and explained that everyone is different in the way the illness affects them. He also said I was taking all the medication I needed regularly and I was leading a healthy lifestyle. All this reassured me and I felt confident again.
What advice would you like to give to others dealing with cancer?
I would like to tell them to be positive from day one. Cancer does not mean cancelled. If you follow the treatment given by your doctor and you treat yourself positively, you will definitely come out of this particular stage.
Every Sunday I go to a temple for a ‘sabha’ which is like a meeting. One day I was constantly thinking about death. That day in the meeting I felt as if God had heard me and was answering my question. The speaker talked about how everything that happens is being done by God. He will come to help me out when I need him. Even my death would be given by him. This statement had a big impact on me. I thought if that is the case then I have nothing to worry about. I can relax and enjoy the life that He has given. I always tell this to my patients as well. Be positive, trust your God and enjoy your life positively. Everything will be fine, just don’t think negatively.
What are your future plans?
My husband is 72 and I am 68. We both lead active lives. My husband works, exercises and also does swimming and walking. I have become fitter thanks to him.
I enjoy my work. It is my passion. I tell my students that I want to work till my last breath. God gives me the strength to continue my work.
As told to Smita Vyas Kumar
