Mukta Bhonsule, 55 was diagnosed with stage 3 breast cancer 9 years ago in Mumbai. She shares her journey with breast cancer, the survivorship issues she deals with and the challenges of balancing this as a caregiver of a COPD patient.
I was diagnosed with Grade 3 Stage 2A Breast Cancer(HER 2+) in May 2013.
What were your early symptoms.
I was on a holiday in Goa and it was very hot there. When I got back, I had itching in my breast which I thought was due to heat and sweat. I spoke to my doctor on the phone who suggested Nipcare ointment. While applying the ointment I noticed a kind of hardening in the breast which shook my world completely. I immediately made an appointment with my Gynecologist who asked me to get a mammogram done.
What diagnostic tests were done?
When my Gynecologist saw the mammogram, she immediately referred me to a surgeon. I figured something was wrong when she insisted I see him right away. I was devastated at first. Then I went into a total denial mode by convincing myself that it was just a cyst or fibroma. I had always been very fit and had been into high impact Aerobics for 20 years, so it came as a total shock when the surgeon on examining said I would have to do further investigations and that it did not seem like it was just a cyst or fibroma.
From then on, everything happened so fast. My husband was unwell with COPD, my two kids were at crucial educational stages with their exams and such. I wanted to be alright for them. I did not even bother to go in for a second opinion as there was very little manpower support for us and I just wanted to be done with this. I did not want to die. My children and my husband both needed me. So I blindly followed everything I was asked to do. The surgeon advised a true-cut biopsy and then a PET scan.
How did the diagnosis come about? What was your course of treatment?
I was diagnosed with grade 3 breast cancer. My husband did come with me for a few consultations and I knew he was doing it out of love and concern for me but it was very difficult for him. He kept going breathless inspite of his portable oxygen machine. We were in a difficult situation. There was this initial stage of tremendous sadness and self-pity and the question “WHY ME” kept coming to me as I had already gone through a hysterectomy and an accidental finding of an enlarged heart (which is congenital) and was living with the trauma of finding out that my husband’s illness(COPD) was only going to progress and there was no medication or cure for this. The fear of the ultimate outcome of his illness was always nagging at the back of my mind.
Finally, I told myself - “ this is it! I had no choice. If I had to recover and keep the sanity of my family, I would have to stay positive and go through this smiling. and not make my family miserable as they all were already handling a lot. y Surgeon told me that I would have to undergo a mastectomy and that he would not be able to save my breast. This was another blow but again I told myself that womanhood is not about your outward appearance but what substance you are made up of and I decided to go ahead with it. At that time all that mattered was to stay alive for my children. The surgery was scheduled.
Post surgery, due to resection of the lymph nodes, I had a lot of nerve tension on that side. It was like a catch pulling up my arm but gradually the pain subsided and I continued with my physiotherapy exercises on my own. (Although it is not the same as before the surgery). I have learned to live with it.
For Chemotherapy, I switched to another hospital where I found a good Oncologist. Radiation was not prescribed. I took Taxol with Herceptin for 18 months.
Were there any complications from the primary condition?
I was diagnosed with hypothyroidism a couple of years after Chemotherapy due to diminished thyroid activity.
Did you try complementary medicine or therapies, like homeopathy or ayurveda? What medications are currently on?
No I never tried anything else. I’m only on calcium and vitamin supplements.
Were there any side-effects of the treatment? If yes, how do you manage them?
- Pigmentation on my face. It started with a small patch on my cheek. Now I have a couple of them more. I am under treatment for it even now. My dermatologist says it is melasma, but even after so many years, it still hasn’t gone completely.
- Pain in my bones, especially after a workout.. So I am on calcium and Vitamin D supplements. My last bone scan was normal.
- Metallic taste in my mouth lasted for a quite a while as well.
- Hair loss during chemo was surprisingly not much of a bother inspite of having long hair at that time. I knew it would grow back. I wasn’t comfortable with a wig so I sported different styles of bandanas and wore long and big earrings which made me feel happy and people who were acquaintances and did not know about my illness actually complimented me on my bold fashion statement
That is the look. This was taken on my birthday. Due to chemo, I could not eat outside food. My friends who were my support system brought the party home by bringing home cooked food.
Do you have a family history of this condition? Is it an inherited disorder?
Not at all.
Have you learnt anything in managing this condition that you wish you knew before?
I sometimes wish I had got breast reconstruction done at the time of my surgery but I was unaware of the pros and cons. The sad part is that no one bothers to understand your psyche. You are not made aware of a lot of things. There are very few support groups or awareness programs organized by hospitals. We definitely need more support groups like yours to help people to understand their condition. You are doing a wonderful job. Please keep it going. My surgeon cited rejection and infection as complications which steered me away from going for it. I have thought about it over the years because I cannot wear certain clothes but then I don’t want to put myself or my children through the challenges of another surgery. I have also always wondered why the reconstruction is not covered under medical insurance when it is due to a medical condition and not for aesthetic purpose. I would be happy if anyone can put light on this subject.
(PatientsEngage note: Some insurance packages cover breast reconstruction if the surgery is done along with the initial treatment)
Knowledge is limited and patients don’t know about a lot of things. When asked, doctors often brush it off. Most consults are 5-15 minutes and that’s it. People need to be more informed about what is going on. Now that I know, I understand more.
What was it like being a patient and a caregiver at the same time?
Very difficult! When my husband was first diagnosed with COPD, we were both very young and my daughter was just 2 years old. His illness started off with pneumonia, but the relief of recovering from it was short lived as it was immediately followed by a persistent cough. A bronchoscopy and a biopsy was advised. When the reports came and Cancer was ruled out, , I was laughing and crying simultaneously with relief but little did I know that COPD was going to be worse than CANCER. At least Cancer is sometimes curable! We didn’t realise at that time what we were in for or how bad it was going to be.
Once I was diagnosed with cancer, the dynamics changed. I had become the patient and he tried to take care of things but he couldn’t attend my consults or hospital visits. My friends came to the rescue and would pick me up before chemo sessions, they would wait with me till I was done and drop me back home after my chemo sessions. During my cancer treatment, my husband’s positive approach and his just being there physically gave me a lot of strength. I felt if a man suffering so much could be so positive, I could surely do the same. He would pamper me by arranging a lot of get togethers at our home with my friends, so that I did not feel disconnected from the world, he would call them home and we would have pot-luck dinner parties. It’s been over a year since he passed away and I truly feel his loss because he was such a happy and positive partner.
So after,my cancer treatment, I decided to pursue my passion for music and started taking singing lessons in Hindustani classical music. Once I got into it, I started getting a lot of appreciation and recognition. I started giving performances and received positive feedback. This improved , my self-esteem, made me happy and confident of my abilities It also made my children and my husband happy. My husband was my greatest fan and encouraged my singing a lot. He was very proud of me. I feel when one is happy, it becomes easier to handle a lot of stress. Music became my stress buster. It still continues to be.I also participate in car rallies.
What were some of the lifestyle changes you had to make?
Outwardly I changed the way I used to dress. I stopped wearing tight or sleeveless clothes because I am not comfortable with the way I look wearing them. Plus due to removal of the lymph nodes the one underarm looks a little different from the other arm. Probably people don’t even notice it but it is very deep in my mind.
I used to do high-impact aerobics before cancer but that stopped because I had a port for nearly 2 years. I now stick to light exercises and walking.
What is your advice to patients who face similar challenges?
- I have realized that you cannot change certain things, so best to understand and come to terms with it. Only then can you figure out how to deal with it.
- If you find it hard to be positive or move on, seek a counselor.
- Do things for yourself! Pursue a hobby,Try and excel in it. Have a life of your own. Take pride in what your do.
- Do whatever it takes to maintain your sanity.
- Do not bother of what the world will say? The world is not going to help you in difficult times.
- Self Image can take you a long way. Dress-up, wear some jewelry and feel good.
- Always tell yourself “THIS TOO SHALL PASS”
- REMEMBER there is always a light at the end of the tunnel.
What are you worried about for the future?
Nothing that is nagging, but we all have that fear of recurrence. Another worry is of lymphedema. I still have very limited knowledge on this. Each time I bend my arm in a certain way or maybe jerk it while exercising or over stretch it, I worry about fluid releasing. I recently had tendonitis on the same hand and worried my head over lymphedema not knowing which doctor to see although nothing really happened. This is one field I need to get more knowledge in. However, that is not on my mind all the time as I take each day at a time and I have kept myself very busy in life in things that I take pride in doing.
