“Be kind and patient with yourself,” Breast cancer survivor, Ms Naveena Nekkalapudis

Everyone’s breast cancer experience is different, including the impact of treatment. Some people may experience few or mild side effects, while others may have long-lasting issues that continue long after treatment has finished.

Common side effects may include: fatigue, hair loss, joint pain, skin and nail problems, menopausal symptoms, lymphoedema, weight loss or gain, poor appetite and diarrhoea.

In addition, breast cancer treatment can also affect a patient’s mental health, their relationships, their ability to work, to look after children and to function in their day-to-day life.

Leading oncology research group, Breast Cancer Trials, is hosting a free, virtual Q&A on Thursday 23rd February from 5-6.30pm AEDT about breast cancer treatments and their side effects, featuring breast cancer experts and patients, hosted by Annabel Crabb. 

This panel includes Professor Bruce Mann, Professor of Surgery at the University of Melbourne and Director of Research at Breast Cancer Trials, Dr Nicholas Zdenkowski, Medical Oncologist, Ms Jenny Gilchrist, Nurse Practitioner in Breast Oncology at Macquarie University and breast cancer survivor, Ms Naveena Nekkalapudis.

Originally from India, Ms Naveena Nekkalapudis, will be on the panel and talking about her own personal experience of breast cancer, breast cancer treatment and the side effects. In advance of the Q&A, we conducted a Q&A with Ms Nekkalapudis about her experience. Excerpts:

Can you tell us when you were diagnosed, how old you were at diagnosis and what type of breast cancer you had?

I was diagnosed on the 24th of December 2014. I was 39 years old and it was a triple negative tumour (with lymph node involvement).

What treatments did you have?

Surgery (lumpectomy with axillary clearance), chemotherapy (six months – four rounds of AC and 12 rounds of Taxol) and 30 rounds of radiation.

Are you still taking ongoing drugs?

Not for the cancer but yes for the long term side effects. I am on multiple pain medications to manage the pain caused by nerve damage from the Taxol treatment.

Can you tell us about the side effects you had from the treatment? Both short and long term?

In the short term, the surgery created severe cording (hardened lymph vessels) in my right arm. The chemotherapy meant hair loss, constipation, a metallic taste, ‘chemo brain’, fatigue, an infection needing hospitalisation after first chemo round, blue tongue and nails (fingers and toes), pins and needles, fluid retention, weight gain, hot flushes, night sweats, joint pain, bone pain (due to needing to take bone marrow stimulating medication to generate white blood cells to stave off infection after the first round of chemo). And with the radiation, I had burnt skin.

In the long term, I have neuropathy (nerve damage) and chronic pain syndrome due to the nerve damage from chemotherapy. This also causes insomnia and fatigue. Plus cognitive impairment from chemo and subsequently from pain medication. And I also have brittle nails.

Do you still have side effects now? 

Yes – the long term side effects are now permanent and will be lifelong.
Were you warned about the side effects before treatment?

Yes, to a degree. I was told about the most common side effects and also provided with written information. Some of the side effects I ended up suffering from were some of the less common side effects, i.e. where a short term side effect could become long term or permanent. I did speak to my oncologist about the pins and needles during the Taxol treatment as it can be a precursor to the nerve damage, but they weren’t severe enough at the time to warrant cessation of the chemo.

Was there anything that helped with the side effects? Exercise? Natural remedies? 

For the hair loss, I tried scalp cooling during chemo but it didn’t work for me. So I used hats and scarves.

Constipation – I used softening aids such as movicol to help.

Metallic taste – I went through chemo in summer and discovered ice cream helped with this to a degree. I told my friends about this and one of them sent me six tubs of ice cream! I told her that she was to blame for my weight gain (as a joke)!

Blue nails – using a dark nail polish to protect the nail beds which the chemo nurses told me about.

For the Joint pain and bone pain, I used Panadol Osteo.

And to help manage the overall stress, distractions such as walking the dog were great. I had brought home a puppy two weeks before I was diagnosed so she was a wonderful distraction.

How did the side effects affect your personal relationships? Work life?

I am single so it has made dating difficult. I also cannot physically and mentally do what I used to do. I forget things so cannot rely on my memory anymore. The physical and mental limitations meant that I couldn’t return to my senior executive role and I couldn’t reliably perform part time duties either so I ended up ‘retiring’ at the age of 44.

How did you feel about the ‘vanity’ aspects, e.g. losing hair, eyebrows, nails blackening? 

The vanity issue didn’t bother me, but I know it does bother other people. My mum really struggled with seeing me that way because every time she looked at me, the lack of hair reminded her that I was sick. I did gain a new understanding of what bald men go through though! Opening a fridge, laying a bare head on a cold pillow, hitting my head on things without hair acting as a cushion. Also, when it rained, the water would run straight into my eyes!! They were small things but enough to drive me insane sometimes.

I did get a shock when I saw my ‘blue’ nails the first time because no one had told me about that. I prided myself on avoiding Google during my treatment but I admit I did google that! I wanted to make sure that my fingers weren’t ‘dying’!

What would you say to anyone that was going through breast cancer treatment about side effects and how to deal with them?

Firstly, I’d say to be kind and patient with yourself and to ask the same of your family and friends. Keep your activity levels up as much as possible to retain your stamina. Find fun activities to do to distract yourself. There will be some tough days, but you will get through them. Speak to the chemo nurses if something is bothering you as they often know a lot of practical things that can alleviate the severity of the side effects. If something is really bothering you, do not hesitate to speak to your doctor/s.  Also, access resources from reputable sources such as Cancer Councils, Breast Cancer Trials or BCNA. And lastly, feel comfortable doing what works for you.

Credit – Breast Cancer Trials

Anyone keen to tune in simply needs to register where they can submit either a written question or a video question that could be asked or played during the broadcast at: https://www.breastcancertrials.org.au/news/qa-events/qa-the-side-effects-of-treatment/