A friend’s cancer and a stomach upset triggered Nitika Mehra to test herself and find out she had breast cancer. She spoke to us about her philosophy and approach to dealing with cancer and life after breast cancer.
Please tell us a bit about your condition and can you describe it? What cancer did you have?
I got diagnosed with stage 1 breast cancer in 2019. I was 50 years old.
What made you go to a doctor? Did you have any symptoms?
A friend of mine had breast cancer and needed a double mastectomy. This news psyched me quite a bit. I was prone to cysts in the breasts for quite a large part of my life and would do a sonogram every 7-8 months. I had not done any tests for two years post my menopause since I was not getting any new cysts. But this distressing news made me think that I should do a test.
The one thing bothering me was that my stomach used to be upset all the time. I attributed it to changing over from regular wheat to ‘khapli’ atta in my diet. I'd been eating it for 3-4 months and then my stomach went bad, and it didn’t get better. I thought maybe I have colon cancer because my dad has had rectal cancer.
Given my dad’s cancer history and the stomach upset I decided to do some non-invasive tests - a Sono-mammogram and some cancer marker blood tests.
The technician who did the Sono-mammogram told me that there was a fibroadenoma in my right breast and added that it would need a fine needle biopsy. However, my gynecologist advised me against a fine needle biopsy because the cyst was too small. The cancer marker test numbers were also a bit on the higher side.
My gynecologist advised me to wait saying it may go away since I had a history. I was busy with some family issues as well. Due to these two reasons, I ended up delaying a repeat of the cancer marker tests for a month.
After a month I did the cancer marker test again. The results were still sitting a little on the higher side. My gynecologist felt it was best that with these results I visited an oncologist. I went to an onco-surgeon who could not feel anything on palpating the breast. I realized that not everyone feels a pea size lump if they have breast cancer. You may not have any symptoms at all.
The onco-surgeon recommended a mammogram and an MRI. Neither of these two tests were conclusive. He decided that we would have to remove the lump because post menopause a fibroadenoma will not dissolve by itself. When I was in the surgery for the lumpectomy they did a frozen biopsy. It is a quick test done on the operating table itself that checks for cancer cells under the microscope. The frozen biopsy confirmed I had cancer. I was discharged the next day after the lumpectomy.
How many lymph nodes were removed?
4-5 lymph nodes were removed to check for the cancer spread.
What were the next steps?
The biopsy showed stage 1 breast cancer. There were some big decisions to be made at this point. The surgeon who operated on me said that I needed only radiation and no chemotherapy. I had my tickets booked to go to UK for a concert.
I went to a reputed Cancer hospital and asked the Dean for advice. He insisted I take chemotherapy, but another senior doctor at the same hospital was of the opinion that I should not take chemo as it could cause side-effects.
I had to decide between these two conflicting pieces of advice after these two meetings. I finally decided to take the chemo as I felt that at that point in time my body could take it.
My thinking was that even if there was a small chance of any lingering cells left behind, the chemo would eliminate them. I didn’t want to take any chances. I decided to go for the chemo and cancelled my UK trip. I also took radiation after my chemo was completed at the same hospital.
After my experience I tell others to get their surgery done by a surgeon but consult an oncologist for the rest of the treatment as they are the experts on the medical parts just as the surgeons are the best at the surgical part.
How many chemo sessions did you have to take?
I took 4 chemotherapy sessions with an interval of 3 weeks between sessions.
What were the side effects of the chemotherapy?
I had terrible gut issues and a lot of ulcers in my mouth. I couldn't eat anything spicy. I developed esophagitis where your whole esophagus and stomach lining gets burnt. I could not swallow water, or my saliva and I could not even breathe easily. I took some mild homeopathy to deal with this. To date I can’t eat spicy food.
My nails started getting ridges which are still there, and the nails have become weaker.
I had a lot of nausea. I would take the chemo and next day I would be in the hospital with terrible nausea. I was prescribed loads of emetics, but they did not work for me. I took some homeopathy for the stomach lining and stayed away from spice and any irritants.
I shaved my head at the start of the chemotherapy to avoid hair loss. However, I lost my eyebrows after the second chemo session and my eyelashes fell out after the third session. Luckily, they grew back well. But even today if I start crying my lashes still fall.
I did not exercise after the chemo sessions were over, which was a huge mistake. I had lost a lot of weight and mistook it for being healthy. I lost core strength and within four months got a bad back spasm and could not move at all. I now make it a point never to skip my exercise routine.
During the lumpectomy they removed 4-5 lymph nodes. This resulted in swelling and very bad pain in the underarm area. I did not realize that you cannot do radiation easily if you cannot lift your arm as you have to lie immobile with your hands raised above your heads for a longish time. Since I had not done any exercises for that area, radiation was painful.
I have chemo fog. It affects your thinking. I started studying numerology and astrology to help me get over the chemo fog. I was told it lessens in 2 years, but I still have it.
I also experienced terrible fatigue and weight loss. There is something called a chemo wall. When I hit this wall the fatigue is indescribable.
Now, I've got weird headaches like pressures in the head which I've recently been told could be long-term side effects of the chemo.
How many radiations did you have?
I took 5 radiation sessions with a gap of 5 weeks between sessions.
I met the criteria for a different type of radiation called accelerated radiation. The advantage of accelerated radiation is that there is lesser amount of burning and less fatigue as you don’t need daily hospital visits
What were the side effects of the radiation?
The skin on the side of the breast got burnt and dry. I had to use a lot of aloe vera and other creams to soothe it.
What has been the post-treatment protocol?
I had a mammogram after 6 months to ascertain that I was clear and an annual mammogram after that.
I am on the estrogen blocker medicine Exemestane for the past 5 years. That course will end this year.
Any side effects of this medication?
I face extreme muscle fatigue due to this drug specially in the legs.
Did you try any other sort of medicines, like supplements or herbal, ayurvedic or homeopathic medicines during the treatment?
During treatment, the doctors and my gynecologist advised me against taking any other medicine. You do not take certain supplements because they boost the growth of good cells while chemo tries to kill all cells. So, it is best to avoid anything other than what your doctor prescribes.
Did you do lymphoedema exercises?
I did not do any exercises post the lumpectomy. Neither my surgeon nor the hospital where I was operated told me about the importance of exercises and physiotherapy. I really suffered because of this. It is difficult to do radiation if you have not done the exercises as your arm does not move. At Tata Memorial they tell you about the exercises and when I was doing counselling there, I would tell the patients to start physiotherapy the day after the lumpectomy.
Did you have a family history of cancer, and did you do genome testing?
I did genome testing and I do not have the BRCA2 gene. My dad had rectal cancer, and I was told that gene on an off chance may cause breast cancer.
What kind of other specialists did you meet?
I have an auto immune condition called Hashimoto that makes my muscles lax. The estrogen blockers also make the muscles lax and cause osteoporosis. I have to take six monthly injections to stop that happening. I have pain in all my bones and in my body and I go to the physiotherapist for exercises.
What was your reaction to the diagnosis and when did you break it to the rest of your family?
I was okay when I heard the diagnosis. I don't remember crying, maybe I teared up for a second. I just felt sad, but I'm the brave kind. I like to think of myself as a soldier plodding on.
My family including my husband, son and daughter took the news horribly though they did not show it to me. They used to parent me and keep a stiff upper lip and make me laugh especially when I was bald. My parents took it very badly as well. I don't think my mom understood too much of the technical details. She just knew it was cancer. My father’s reaction was worse because he is a doctor.
When I had to shave my head off, I cried for a bit. Those 10 minutes of transition I felt really alone. But other than that time I never felt alone at all through my treatment because I was always surrounded by my family and close friends.
My mother-in-law was a huge support. She managed the house because we couldn't let in too much staff. My immunity was at rock bottom. So, I couldn't even take food from anybody. She took over everything and it helped me a lot to be free of the responsibility of the house.
What about your diet?
I eat healthy. I stopped eating sugar other than in Mithai, which I have cut down now.
I stopped milk. I stopped wheat but that is more because of my Hashimoto.
During the treatment I had a low iron count but could not take iron supplements, so I used to eat palak. I would freeze palak in little bowls and then just eat that daily.
I eat a lot of cruciferous vegetables like broccoli and cabbage. I just make a soup out of that and freeze it and keep eating it.
Since I am on estrogen blockers I can't eat soya, edamame or anything which can boost estrogen.
How did you mentally and emotionally cope with the whole challenge? Were there any specific times or issues that you found really challenging to deal with?
I spoke to my dad once when I was very upset and was asking him why it had to happen to me when I was such a giver and so kind to everyone. I was full of self-pity.
My dad heard me vent and then he gave me three words- cancer, chemo and ‘niyamat’ for which the closest translation is blessing or a boon.
He explained that I got cancer, and I took chemo as a treatment. Everything else that happened which helped me to deal with the cancer was ‘niyamat’ - a blessing. He proceeded to list them for me. The cancer was caught randomly in time without me suffering from any discomfort; I got a difficult to get appointment with the Dean at the hospital immediately; my hospital was only 4 minutes away from home; the radiation was a different type that had lesser side effects and was faster. He reminded me that I had so much support from my family, friends, my house help and even my gynecologist who held my hand during the surgery.
He explained to me that the body is like any machine that breaks down. What made me think that nothing could happen to me?
That talk was like an eye opener for me. I realized how even he had battled cancer, and I had stood by him through that journey. I reminded myself that I am a soldier's daughter. How could I whine and whinge and drown in self-pity? After this talk, I decided I would cry when I wanted to, but I would not complain.
I also kept my sense of humor. During the first chemo some friends had come to console me and make me feel good. After that, they went back laughing. They said, we came here to console you, but we are going back laughing. Humor helps to deal with tough things.
Overall, I just try to be happy and enjoy life. I try to step out more. And nobody matters anymore. Each day is important for me. That's all.
The doctors saw my attitude and asked me to come and do counselling with the other patients. I was bald from the chemo, I had barely finished my radiation, and I started counselling patients once a week for an hour.
The counselling from a fellow patient who has just undergone treatment is very helpful and positive for patients. It is important as the doctors don't have time to talk to the patients. I did the counselling till the hospital stopped it during Covid. I have not gone back post Covid.
Who was your biggest support?
I can't pinpoint one person. The right person was there for whatever was required. My mother-in-law took charge of the house, husband and kids were always there and even my house staff were patient with my crankiness and bad temper.
When did you tell the news to your friends, distant relatives?
I didn't tell too many people. I found people's comments mostly irritating. They kept saying things like “oh its only breast cancer, it will be all right,” “chin up,” “be positive.” I realized that cancer is actually still a stigma. For example, when I told a relative, I had cancer her reaction was don’t say the word cancer. People don't know what to say when they hear you have been diagnosed with cancer. So, they say the wrong things and that would bug me.
I stopped meeting people because I got fed up of their awkward conversations with me.
I decided I would speak to max one person a day and that too only if I felt like it.
You started a humorous page- ‘Cancertainment’ on FB around cancer. Can you tell us more about that?
I used to crib a lot about the insensitive comments that people made. A friend suggested that I stop my whining and start a Facebook page where I could write whatever I wanted.
So, I made the page for a small group of people. And later I opened it up to public. I was hoping that reading my posts would make people more sensitive and give them an idea on what kind of conversations to have with someone who was dealing with cancer.
What would you say to patients who are facing similar challenges?
Cancer has given me a lot of enlightenment. I will never be flippant about cancer with anyone who has it. I will never mock it or make fun of it. My sympathies will be with that person. I will hold their hand, give them hugs. I will tell them to treat it like a war and fight it out.
I don't like to use the word survivor or thriver. I am a soldier’s daughter, and I treat it like a war that I have to win, and which is now over. I will tell them to have the same attitude.
What are your worries about the future?
I always have a fear now when some illness doesn't go away in a few days. The first thought is that it could be cancer. When my headaches started and didn't go away promptly, I did an MRI. When the MRI was clear someone said you should have done a contrast MRI because the contrast will show whether there's a tumor and I go back into the doubt loop again.
I have a big a mole on my back. My first thought is if I get it taken off, there will be a test for cancer. Everything leads back to that thought.
I realized when I got the chemo that everyone has an exit door. Cancer, heart attack, anything. I can now see that door. So, I like to make the most of each day. If I want to go out but am feeling unwell, I pop a pill and then go out. I feel, why waste a day? Sometimes when I'm angry I first want to deal with it. Then I think, what's the use of all this? We won't even remember the fight tomorrow. We may as well have fun. That's the better way to live.
At the grand old age of 55, I have realized that things don't really matter. The only thing I'm scared of is holding on to anger, hurt or other negative emotions. I believe those emotions will settle in my body and then will show up in some way.
I got burnt on my hand with the chemo. All my veins had become spaghetti veins. The chemo drug is extremely acidic. It has to be put in very carefully. If it touches the side of the vein, it cuts through, burns through it. So, it got burnt and became very bulbous and infected. It left a big scar that served as a reminder of how things were and how I should live each day the best I can. But now the scar is fading. So, I'm going back to my patterns of overthinking. There's no vein there anymore but if I press that spot it still pains a bit. It serves as a good reminder that everything is just transitory, and nothing is important.
