Prof Carol-Ann Benn explains why you need to ‘just keep swimming’ when dealing with the side effects and adverse events of breast cancer treatment.
With such high numbers of COVID and so much stress around health, the concept of ‘just keep swimming’, the wise words of Dory, should be a motto that we all strive to achieve to help us deal with fear and fatigue during these challenging times.
To do this, I’m going to mix and match from Finding Nemo and Finding Dory. Nemo is that adorable little fish with the gimpy fin; he was caught in a fishing net (a health event) and his dad, Marlin, came to rescue him with the help of Dory (who has memory loss).
Finding Dory is about Dory going on a personal journey to find her family. Along the way she has to deal with her health diagnosis, as well as overcome the difficulties her disability comes with while she meets and gets help from other sea creatures dealing with their own health disabilities.
The event: a breast cancer diagnosis
You are diagnosed and may need treatment. Some resist, present late and don’t want to choose or accept the treatments offered. Often this is because of fear of side effects or complications. Is this brave or foolhardy?
The foolhardy part is in not knowing the facts: that we diagnose breast cancer not with an operation, but a radiological needle biopsy and we treat cancer on how it behaves. Unfortunately, we can seldom avoid certain treatment by trying to swap one for another. For instance, asking for both breasts to be removed so as not to have chemo or radiation.
The truth is that managing a healthcare journey is frightening and managing a cancer journey is more so.
Your journey may involve starting with oncology medication. These can be chemo; chemo combined with target therapies; endocrine therapies and sometimes immune therapies.
Chemo are medicines that are cytotoxic and kill cancer cells. Target therapies specifically target cells with certain receptors. Immune therapies affect the immune cells and enable them to fight cancer cells; and endocrine therapies affect cells with hormone receptors or affect the body’s hormonal systems.
Chemo can be given orally or intravenously and targets rapidly dividing cells, thus destroying the cancer cells that are dividing faster than normal cells. But here’s the kicker, some normal cells in our body also divide fairly quickly. These are found in your blood, gut, mouth, intestinal tract, hair, nails, nose and vagina. So, chemo affects them, too.
Chemo does have side effects but for all the side effects of chemo, the side effects of not treating cancer is it spreading with the potential of killing.
The healthy cells in your body can repair the damage that chemo causes. Your hair will grow back, blood cells will recover, and energy levels will improve. Cancer cells aren’t very organised and don’t repair so successfully.
The side effects
The side effects that you may get from chemo depend on the regimen that you’re offered, and like antibiotics there are many different combinations, and the dose you receive as well as how long you’re on treatment, your general health and chronic medical concerns also play a role.
Your side effects may be completely different from someone on the same treatment. This is a bit like COVID-presenting symptoms and outcomes that are all different, and this is where the concept of being brave like Dory is so important. I think short-term memory loss is a genius approach to life because instead of getting bogged down by worries, stress and planning, it’s far more healthy to stay in the present and no matter how hard things get, just keep swimming because while not everything in life is easy to do, if you just keep swimming, you’ll get through it.
With that in mind, it’s important not to over research on social media and Google, otherwise fear can grow and be quite debilitating. Just like when Dory gets overwhelmed, instead of feeding that fear, she keeps swimming, slows things down and takes one small step at a time until she is calm and able to keep going again.
Share your side effects
During the recovery phase from chemo, other medicines and supportive care can help ease some side effects you may have. Never be scared to tell your navigator, doctor or support team about them.
Dory was quick to inform her team of the resultant successful journey, and she always knew she couldn’t do it alone. She shared her concerns and difficulties with her friends, and that’s what helped her overcome her obstacles.
Controlling side effects isn’t necessarily about adding more medicine. There are many options, including thinking of your own attitude and sharing your issues with your team. It’s okay to be afraid to share but showing your true colours helps your team help you, just like it did with Dory.
Most chemo side effects are transient and your body recovers after finishing treatment. Some side effects, however, may take longer to recover from, or never go away completely (this would be considered an adverse event to treatment).
Oncology doctors have a habit of listing every possible side effect with both short- and long-term sequelae. This is why so many are frightened to start the journey, it’s overwhelming! But remember, the consequences of not (think of your family and friends) deciding on a chemo regimen, weighing the benefits versus the side effects are part of the process.
What are the side effects?
Anaemia (low red cell level) will get better but sometimes iron supplementation is necessary. Yes, that blood lust of Bruce (fish are friends, not food) may need to be addressed but it’s not something that can’t be handled.
Low white cell counts can result in an increased risk of infections so here the COVID mantra of safe social distances and masks isn’t new in the oncology setting. Should levels be really low, a fancy drug can be given to raise blood counts.
Fatigue is a result of the above; but much like listening to your body during pregnancy fatigue or just overdoing it, this will get better over time.
From the gut front, mouth sores can be managed with an attention to mouth hygiene and a dental assessment prior to starting. If you get mouth sores, these can be managed with a variety of gargles and if you get burning mouth pain, treatment with an antifungal is often needed. Probiotics, such as water kefir, is also recommended, and can help manage diarrhoea and nausea. Ginger tea and rooibos help here too as well as a variety of medication.
Nail changes can often be managed with colourful Gelish nails and tea tree or peppermint oils. Bad fungal nail infections are slightly harder to manage.
Hair change and loss is a bit like the scene where Dory is looking for her family and it’s all grey (pollution). Chemo pollution is often visible with hair loss. But this too can change, sometimes the use of cold caps that freeze hair follicles can help. Other times, just go with the flow and yours will grow back. Think about Bailey, the beluga whale, he couldn’t echolocate after his head injury. It took a while for him to get it back, but it did come back after a while and your hair will too.
Neuropathy is nerve change that happens as a result of some chemo drugs. Again, cold gloves and socks help, as well as vitamin B supplementation during treatment. Some women get significant nerve changes that can last a long time and sometimes forever. Here, hyperbaric oxygen plays a role. Certain cream supplements also help, including CBD creams.
The adverse events
I would call chemo-induced menopause, fertility issues and memory loss examples of adverse events. These may be permanent, and are like what Dory and her friends deal with; Bailey with location disabilities, Dory with her short-term memory loss, Nemo and his gimpy fin and Hank the Octopus who’s missing a limb. These are difficulties that will never go away but something they all need to learn to accept and live with.
Having battled with menopausal symptoms since the complicated birth (health event of my third child), I wouldn’t swap out that lesson. Certain health adverse events aren’t replaceable with the joyous outcomes of beating cancer.
Other adverse events, such as heart problems, are uncommon but serious and thanks to the new field of cardio-oncology these are detected earlier and managed more successfully now.
The effects of surgery
The surgery journey reminds me of Hank. Breast cancer surgery today shouldn’t leave you with seven tentacles. Most times, surgery can be breast-saving and whilst understanding that your new breast look isn’t what you started with and will involve scars due to cutting and removing a cancer with a clear margin.
I’m not the insensitive oncoplastic surgeon who says he will make you better looking. I’m the one who says love you and don’t have surgery unless you need it.
If you do need it, take time with all the options available. Try and embrace the less is more approach. You can’t go back from more is more (bilateral mastectomy) so just like Hank, learn
to love the new you. It’s not what you started with, but you’ll still manage just fine with your new look. It just takes some getting used to, a good attitude and maybe help from a friend like Dory.
Effects of surgery involve drains, scars and time needed for your body to heal.
Adverse events can happen although uncommonly in specialised units treating breast cancer patients. These can be: bleeding; to fluid leaks (seromas) to unusual pain (sometimes nerve pain); lack of sensation and pulling in the axilla (particularly after surgery). Why this happens in certain people we can’t explain. In some ladies where many lymph nodes are taken and they get radiation, lymphoedema may develop. This can be managed and decreased by lymphoedema specialists to an extent, so early interventions, such as massage, are important.
The data today shows that breast-saving and radiation has a better long-term survival than a mastectomy without radiation. More people actually need radiation today.
The side effects of radiation
Radiation affects the breast in various ways and thus has to be compensated for, if possible, during the initial reconstruction. Radiation is usually after surgery and may result in certain transient side effects or rarely permanent adverse events. These changes include but aren’t limited to:
Loss of volume: Thus, initially the breast that will need radiation will be made slightly larger than the opposite breast.
Fat necrosis: Death of fatty tissue and formation of hard lumps. These may be managed conservatively and may perhaps be best not to interfere and cause further fat necrosis. Otherwise, we may elect to excise the hard tissue or inject some fat, all of which may only partially improve the condition.
Skin changes: Some people get significant reactions, but most are transient, such as skin burns and severe redness. Occasionally pain and a burning shooting sensation as well as swelling and oedema occurs.
Radiation fibrosis: This is a horrible side effect and adverse event where the breast fibrosis shrinks and becomes hard. This is more common in women who smoke but can occur rarely in anyone. There is a lot of new research in using hyperbaric treatment to manage this.
Chronic medication and the aftermath of cancer treatment is no different from having diabetes and being on insulin for life. When I’m asked, “How long will I need to be on endocrine treatment?” I often reply, “How long should one be on cardiac meds, or medication for HIV or depressive disorders?” Often, for life.
But like Dory and her friends, this becomes something we learn to live with and manage in our own way. It starts out difficult, but with support networks and coping mechanisms, it does get easier with time.
Currently, the rules for endocrine medication is 10 years but this may increase. If it does, the medical fraternity will find better ways to manage side effects because compliance is important to improve cancer survival.
Finding your inner equilibrium whilst dealing with treatment is important and whilst not easy, we salute those that try and embrace their journey. Bravely try and fail rather than never take the journey.
Think about when Dory remembers the shells her parents placed out for her to find her way home. The fragility of shells are your inner strengths and backbone to help you on this difficult path, so you can find your way home to your family and friends that love and support you through this trying time. This applies to all in this worldwide pandemic and especially to cancer patients. The path is difficult, but with the help of your own shell path and support from your family and friends, if you just keep swimming and keep up that positive mental attitude, you’ll get through this difficult time. Just remember, even Dory always got help from her friends, so never feel like you have to go through things alone.
MEET THE EXPERT – Prof Carol-Ann Benn
Prof Carol-Ann Benn heads up internationally accredited, multi-disciplinary breast cancer centres at Helen Joseph Hospital and Netcare Milpark Hospital. She lectures at Wits University and, in 2002, established the Breast Health Foundation.