A voice for the voiceless

 

My name is Martie Westraad. I am 53 years old and live in Suiderberg, Pretoria.  I was worried and concerned about my breast as I could see something terrible was wrong with my one breast. I first went to CANSA in Rietfontein. They referred me to Pink Drive, who immediately referred me to George Makhuri Hospital in Ga-rankuwa.  I was diagnosed with stage 3 advanced breast cancer in March of 2016 after all the required test were done and started with chemotherapy in June 2016. My next appointment was scheduled for 12th July 2016, however on the 8th July I received a phone call from the breast clinic to inform me that my appointment had been postponed as there was no chemo stock available for my treatment. They said I should phone again in August to determine whether they have received stock of the specific treatment. This was very stressful for me as I realised that I cannot miss one chemo treatment and if I do I have to start all over again. My colleagues at work offered to help me financially to pay for the treatment if we could buy it  privately, and if it could still be administed. This was a dead end as well, and to crown it all the staff at the hospital were very rude to me. I decided to phone the Pink Drive as I knew that this is not supposed to happen. I was asked to send an email with all the details, which I did and the next moment the emails started pouring into my inbox from ALL the various organisations that started fighting on my behalf. I sat back and read …. I did not even know that they all exist. I did not even know that this is possible.  That was Friday 8 July. On Monday 11th July I received a personal phone call from the acting CEO of the George Makhuri Hospital, Dr Freddy Kgongwana, to inform me that I must come to the hospital for the scheduled chemo treatment on the 12th July as they have received their stock. I went – and yes I was able to get my treatment on time. THANK YOU to The PINK DRIVE for initiating this CALL for HELP and to ALL the members of the Advocates for Breast Cancer who got on board and voiced their concern about this. You really are the “Voice of the Voiceless”. Thank you to the Department of Health for dealing with this matter so speedily – is certainly good to know that we can depend on you in our time of need!

Introducing… The Breast Health Foundation

The Breast Health Foundation was launched in 2002 to raise awareness of breast health among women through a series of community based education projects and creating awareness via community health facilities.

The projects currently employ six women, themselves breast cancer survivors, who give talks at churches, places of employment and public clinics about breast health, breast self-examination and the importance of early detection.  Fourteen years on and there has been a noticeable increase in the number of women being diagnosed early.

Over the years the organisation has, through expansion, based itself in the Vaal/Sedibeng area, Cape Town and Durban. The women based in those areas facilitate educational talks, counselling and patient navigation. These educators are also at the regional breast care centres to assist the patients that have been referred and provide counseling if diagnosed.

To date our community educators have directly impacted 72 811 women through community education projects and have made 291 clinic visits. In total, 2913 women have been navigated and 376 diagnosed with various stages of breast cancer throughout all our active areas.

Bosom Buddies (BB) was established as a project of the BHF, a support group for survivors and their family and friends. The group aims to provide emotional and informative support to all individuals diagnosed with breast cancer and is run by survivor volunteers. The ‘buddies’ provide support to people affected by breast cancer at point of diagnosis and during treatment. BB hosts public meetings in Johannesburg every seven (7) weeks and speakers are invited to share knowledge and experiences with the buddies.

Buddies for Life, a bi-monthly lifestyle magazine, is published by Word for Word Media on behalf of the Breast Health Foundation. In sustaining the aims of the Breast Health Foundation. All of the persons involved with Buddies for Life are either medical or healthcare professionals, and they have been affected by breast cancer themselves or have been inspired by a breast cancer survivor. Each issue of Buddies contains a section dedicated to the early detection of breast cancer.

The Breast Health Foundations purpose is to:

• increase the awareness of breast health;
• promote education and treatment and
• provide support in respect of breast health.

Our mission is to

• create breast health awareness in the community,
• ensure individual access to information,
• potentiate access to appropriate healthcare resources,
• create an ongoing audit of operational effectiveness and
• offer emotional and informative support.

 And through our projects, we have succesfully managed to realise great results.

You can connect with us on a daily through our social media pages:

:

BHF: https://www.facebook.com/BreastHealthFoundation/

BB: https://www.facebook.com/groups/31260668033/?ref=br_tf

Buddies For Life: https://www.facebook.com/BFLMagazine/?fref=ts

EBC:  https://www.facebook.com/groups/903665216386353/

BHF: @BreastBhf

Buddies For Life: @BFLmagazine

This post was written by R.Vanessa Mthombeni for The Breast Health Foundation

 

 

 

Creamed root gratin

Another recipe for the tough times. This is pure comfort food for when you feel like nothing else.

500g potatoes, peeled and chopped
a generous cup of celeriac, peeled and chopped
1 small parsnip, peeled and diced quite small
1 small chopped onion
1 clarge carrot, peeled and very thinly sliced
1/2 teaspoon ground nutmeg, and the same of black pepper
1 teaspoon low salt stock powder
Soya milk to cover

Bring to the boil and simmer until the vegetables are very soft. Drain and mash or blend to a smooth puree.

Pile into an oiled, overnproof dish, splash with a little olive oil and soy sauce and bake in a hot oven (200 deg C) until golden.

Serve hot, sprinkled with parsley or chives.

Yummy!

THANKS TO DR ROSY DANIEL, WHO HAS GENEROUSLY SHARED THE CANCER LIFELINE RECIPES WITH US. THIS RECIPE IS FOR THE TOUGH TIMES, FOR USE WHEN YOU ARE VERY ILL, DURING TREATMENT, WHILE THE APPETITE IS POOR AND THE WEIGHT LOW.

Targeted biological therapies

Approximately 20% of breast cancers are known as HER2 positive. This means that a gene mutation has caused the cells to have an over expression of HER2 receptors and this protein signals the cancer cells to grow and divide.

The HER2 receptor can be tested for by:

1. Immunohistochemistry (IHC)- which shows how much of the protein is on the cell surface
2. In-situ hybridisation (ISH)- which tests the number of copies of the gene inside the cell..

HER2 positive breast cancers tend to be more aggressive than HER2 negative cancers.

Trastuzamab (Herceptin) is a biological therapy that has been designed to specifically target the HER2 receptor in HER@ positive breast cancer. It reduces the risk of recurrence and death in women with HER2 positive breast cancer and prolongs survival in women with HER2 positive metastatic breast cancer.

Lapatinib (Tykerb) is another “HER receptor blocker” that is sometimes used in combination with Herceptin

Side effects:

Although Herceptin has been shown to have greatest benefit when used in combination with chemotherapy, it is not in itself a chemotherapy treatment. Chemotherapy treatments affect all rapidly dividing cells whether they are cancer cells or healthy cells.

Herceptin, however, targets only those abnormal cells with increased display of the HER2 receptor and it spares the healthy cells.

For this reason the side effect profile is substantially less.

Its main possible side effect is on the heart and the use of Herceptin in some patients may require baseline and periodic cardiac function tests. This side effect is usually reversible. In some cases hypersensitivity or allergic reactions can occur and for this reason it should be given in an appropriately equipped facility by staff who are trained to manage a possible reaction. Other less common and mild side effects may include fever, throat irritation and runny nose.

It is an intravenous therapy administered via a peripheral drip into a vein ideally every 3 weeks for one year.

However, it is unfortunately extremely expensive, not yet available in State hospitals and not covered by many Medical Aid schemes.

For those who can afford it, or those whose medical aids will cover it, Herceptin has significantly improved the prognosis and survival of patients with HER2 positive breast cancers to the extent that the outcomes are even better than some patients with HER2 negative breast cancers!

This blog was kindly supplied by Ronelle de Villiers at http://www.capebreastcare.org

 

Buddies for life!

Buddies For Life is a bi-monthly lifestyle magazine, published by Word for Word Media in association with the Breast Health Foundation, for breast cancer patients, their families and friends. It was launched in June 2011, and 22 issues have been published to date with many more to come.

The glossy print and online magazine aims to educate, encourage and provide support. An array of medical professionals and experts write supportive and educational articles for the magazine on topics such as treatment, health and wellness, diet, fitness, sexuality, new advances and psychological advice that will assist those affected by cancer to understand the disease and treatment.

The content is essential reading written in a style that simplifies terminology. Super Survivor is featured on the cover of every issue and the breast cancer survivor’s story is told. On the Chemo Couch is another platform for survivors to share their unique story.

In keeping with the aims of the Breast Health Foundation, each issue contains a section dedicated to the early detection and awareness of breast cancer.

Oncology Buddies, supported by CANSA, is a new section within the magazine catering for other cancer awareness, early detection and various support groups.

Buddies For Life is available in print at hospitals, private clinics, oncology practises, mammography units, radiology centres and support groups. Medipost courier the distribution of the print magazines to all the various distribution points.

A digital version is also available on www.buddiesforlife.co.za and yearly subscriptions are offered.

 

The Breast Health Foundation is one of the partner organisations in the Advocates for Breast Cancer (ABC)

Hormones and the endocrine system

The role of Hormonal / Endocrine therapies in breast cancer

Approximately two thirds of breast cancers are oestrogen positive which means they have oestrogen receptors on the surface of the cells and therefore depend on the hormone oestrogen for growth.

This has meant that a range of treatments could be developed with the aim of decreasing the cancer growth or stopping the cancer from coming back by preventing oestrogen action on the cells.

These treatments include: Tamoxifen, Aromatase inhibitors, and Zoladex injections.

But what are they, and how do they work?

Tamoxifen

How it works

This is a synthetic hormone that binds to the oestrogen receptors on the breast cells in place of the woman’s own oestrogen. Unlike natural oestrogen, it does not stimulate breast cell growth and therefore has the effect of “blocking” the receptors.

It can be used in both pre-menopausal and post-menopausal women.

Trials have confirmed that tamoxifen significantly reduces the incidence of local recurrence, metastases (spread of breast cancer to distant organs) and breast cancer in the opposite breast.

It is taken as a single tablet daily.

The benefits have shown to be optimal if taken for a period of 5-10 years.

Side effects

Tamoxifen is in the group of Selective oEstrogen Receptor Modulators (SERMS) which means that it has different effects on different tissues in the body. While it blocks the action of oestrogen in breast tissue, it also has partial estrogen activity in other tissues.

This is the basis for its possible side effects such as hot flushes, vaginal dryness/bleeding and endometrial thickening or polyps.

Other side effects have been associated with its use such as thromboembolism, nausea/diarrhoea, weight gain,headaches or dizziness, and low mood.

It is important to realise that not all patients experience these side effects and some may experience them to a very mild and completely tolerable extent.

Aromatase inhibitors (AIs)

How they work

Aromatase inhibitors are another way of reducing oestrogen effect in post menopausal women. In this group of women, oestrogen is no longer produced by the ovaries, but smaller amounts of oestrogen are still circulating. This oestrogen is derived from androgens which are converted into oestrogen by the aromatase enzyme in peripheral tissues such as fat. The AIs block this enzyme and, in so doing, reduce oestrogen production.

There are 3 main AIs: Letrozole (Femara), Anastrozole (Arimidex), and exemestane (Aromasin).

They are prescribed as a single tablet every day for or at least 5 years.

Sometimes they can be used in sequence with tamoxifen where the patient will switch to an AI after 2-3 years of tamoxifen, or as an extended adjuvant therapy where an AI may be started after 5 years of tamoxifen.

Side effects:

Due to the different mechanism of action, the side effect profile of AIs is slightly different to that of Tamoxifen.

The gynaecological side effects are less of a problem with the use of AIs compared with tamoxifen. However, the AIs may cause joint pain, stiffness and bone loss.

Women who are scheduled to start an AI should have a baseline and then periodic Bone Mineral Density assessments (an outpatient X-ray or DEXA scan). Calcium,Vit D supplementation and, in some cases, bisphosphonates may need to be considered.

Ovarian ablation/ suppression

Surgical removal of the ovaries or ablation of the ovaries with radiotherapy has been shown to arrest breast cancer growth due to the depletion of oestrogen.

Ovarian suppression can be achieved medically by using gonadotrophin-releasing hormone (GnRH) analogs. This has been shown to have equivalent effects as surgical or radiation induced menopause with the added benefit of being reversible after the completion of therapy.

Examples of these treatments are goserelin (Zoladex) and leuprorelin (Lucrin).

They are administered as an injection under the skin either monthly or 3 monthly.

These drugs can be used in combination with tamoxifen and aromatase inhibitors in both pre-  and peri-menopausal women.

Resistance

Although tamoxifen and the AI’s have been proven to be extremely effective treatments, resistance to treatment has been described. Further research is being done in order to understand mechanisms of resistance and to combat resistance pathways.

Endocrine treatments such as fulvestrant (Faslodex) are being used in cases of advanced or metastatic disease or recurrence of breast cancer during endocrine therapy. It is an oestrogen receptor down- regulator and is given as a monthly injection.

Selection

The selection of which endocrine therapy or combination of therapies is individualised and depends on whether the patient is pre- or post-menopausal, whether she has contraindications to any of the treatments, treatment interactions with medication she may be taking for other conditions and the extent of the side effects she may develop on the medication. Of course, patient preference is an important consideration. Financial implications may influence treatment decisions too.

Dr Ronelle de Villiers

MBChB, DCH, BSc(med)

 

 

 

 

 

 

 

 

 

 

 

Keeping cool in the tough times

It is hard to imagine feeling hot and bothered in our chilly winter weather, but cancer treatment can play havoc with our normal body temperature.

And even if you are not feeling the heat, you can always do with a fruity vitamin boost!

Two Coolers
When you feel hot and bothered or sore try these to soothe and refresh.

Strawberry and Citrus Sorbet

Fresh juice of 2 big oranges
Fresh juice of 1 pink grapefruit
Fresh juice of 2 tangerines
Zest of 2 organic oranges, finely grated
10ozs (250g,2 cups) fresh strawberries or raspberries, cleaned
5 tablespoons maple syrup

Whizz together in a goblet blender or food processor. Pour into a shallow dish and freeze for 2-3 hours. Break into chunks and process again (using a sharp blade) until smooth and creamy. Return to the freezer for 30 minutes before serving. If you want to leave it longer in the freezer put it into little ice-lolly moulds at the final freeze and get them out as you feel the need.

For a change with added food value, try adding:

4ozs (100g, ½ cup) plain silken tofu
2 tablespoons more of maple syrup
2 teaspoons vanilla essence

Include frozen bananas at the final whizz stage before the second freeze.

Frozen Bananas

The simplest soother ever! Just peel ripe, firm and perfect bananas, wrap them individually in kitchen wrap/film and freeze overnight. Nibble on them whenever you fancy something cool and creamy. Don’t keep them in the freezer for too long, just do a few at a time.

If you can find sugar-free carob drops (try health food shops) melt them like chocolate in a ‘bain-marie’ (double saucepan) and dip your bananas in for an iron fortified, luxurious treat.

THANKS TO DR ROSY DANIEL, WHO HAS GENEROUSLY SHARED THE CANCER LIFELINE RECIPES WITH US. THIS RECIPE IS FOR THE TOUGH TIMES, FOR USE WHEN YOU ARE VERY ILL, DURING TREATMENT, WHILE THE APPETITE IS POOR AND THE WEIGHT LOW.

Staying fit, feeling good

Do daily exercises

After a mastectomy or if you have surgery to your armpit, your surgeon and physiotherapist will ask you to do regular exercises to help you recover. Your arm may feel stiff on the side where your breast was removed. Simple arm exercises can help to

• give you back your full range of movement (also important for radiotherapy treatment)
• relieve pain and stiffness
• reduce swelling

After surgery, do the exercises until you have full movement back in your arm and shoulder. Ideally, you should do these twice a day.

To start with, the exercises are quite gentle. The aim is to get your arm and shoulder moving as it was before the surgery. You can begin each session by circling your shoulders, to get the muscles moving. Other early exercises are brushing or combing your hair, putting your arms behind your back and touching your shoulder with your hand. As you get stronger and more confident, you can do more of the exercises and gradually increase the range of movements.

Have a look at this excellent video:

https://www.youtube.com/watch?v=vo1S-K2MetM

Talk to your surgeon or physiotherapist if you have ongoing problems with arm or shoulder pain, stiffness or swelling.

If you have had breast reconstruction surgery the exercises you do are different and depend upon the type of reconstruction you have had. Check with your surgeon and physiotherapist!

Stay physically active

Tiredness and weakness is finally being recognised as one of the most common side effects from cancer treatment. It’s called: Cancer Related Fatigue. The reasons for it are multifold: the cancer itself drains your energy, the treatment is intense and often toxic, but also the lack of normal physical activity during treatment leads to loss of fitness.

It is encouraging that taking regular exercise can help to combat it. More and more research is showing that exercise during and after treatment is safe and helps recovery after cancer. Regular exercise can reduce stress and give you more energy.

 

But how much, and how often, and what exercise is suitable for me?

To be beneficial, exercise should be 30 minutes a day, 5 days a week, of moderate intense activity such as walking, cycling or dancing. You should get warm and increase your heartbeat without getting out of breath. This level of activity is helpful for people even during treatment.

Everyone is different and exercise needs to be tailored to individual people, taking into account your diagnosis and treatment (weightlifting shortly after breast surgery), other problems (diabetes, cancer in the bones) and not least: what you love to do and feel is possible in terms of time, travel and costs! A physiotherapist or biokineticist can help you on your way.

Have a look at the pyramid and see what daily exercise you can easily incorporate in your life.

Exercise can also be helpful in a number of cancer related side effects:

• neuropathy (pins and needles, problems with balance): aerobic exercise helps with the recovery of the damaged nerve ends by increasing blood flow.
• osteoporosis (thinning of the bones): weight bearing exercise means running or rowing or anything where your bones are doing some work. This type of exercise may protect you against osteoporosis (thinning of the bones). Osteoporosis is a concern for many post menopausal women who have had hormone dependent cancers and so cannot take hormone replacement therapy.
• depression/anxiety: many women with breast cancer battle with depression; regular exercise, possibly in a group, leads to less anxiety and need for medication.

Keep your pace

A very important advise to women fighting cancer is to listen to your body. But how can you do that, juggling a family, doctor’s appointments, medication, work obligations and loosing a breast at the same time?

• set your pace: this is about you, take the time you need and be direct to your husband, children and work colleagues of what you Make a list of what you want and need.
• keep involved: do what you want to do and can do at work and at home, and leave the rest to others (shopping, cooking). Set clear boundaries to prevent guilt and miscommunication. Learn to say “no, not now”.
• plan your day to conserve energy: and plan for 30 mins of exercise.
• learn to listen to your body: practice relaxation techniques or yoga (plenty of great apps http://www.healthline.com/health/fitness-exercise/top-yoga-iphone-android-apps#2 and classes) or mindfulness (https://www.youtube.com/watch?v=19Dkf3KJqIY)
• learn how to engage in physical contact again with your spouse or partner: touch, talk and stroke, and go slow. http://www.breastcancer.org/tips/intimacy/changes , http://www.cancerresearchuk.org/about-cancer/coping-with-cancer/coping-physically/sex-sexuality-and-cancer/sex-and-cancer-for-women
• simply be beautiful: spend time on feeling feminine, spoil yourself with clothes or a massage or a lovely wig: going through cancer is an assault on your body, and (learning to) love your body is helpful to survive cancer.

This great advice was shared with us by the fabulous physiotherapist Liesbeth Raymakers

 

Staying active and healthy

We’re on a mission to help you to live an active and healthy life during cancer treatment, to empower you actively to cope with the cancer journey.

The recipies we are sharing are part of that, and here is a great list of things to do (and not to do) to make your journey easier.

Do’s:

• talk with your loved ones about your feelings of loss, speak to other breast cancer survivors, find support online
• get adequate pain medication
• contact your doctor or nurse when you develop problems
• massage the scars daily, dry or gently with a non-irritating skin oil. There’s a good video here to help you.

• get information of breast prosthesis and options (cansa.org.za, www.reach4recovery.org.za)
• eat healthy, stay active
• do shoulder exercises

Don’ts:

• push yourself: be mild and accept the pace your body is healing at
• lift or carry anything heavy for the first few weeks after surgery. This includes vacuuming, shopping and lifting a full kettle or a child.

Watch out for:

Wound infection

If your operation site becomes red, inflamed, or painful, or there is a fluid (discharge) leaking from your wound site, you may have an infection. Contact your surgeon or breast care nurse immediately. If you have an infection, you will need antibiotics to clear it up.

Fluid collecting around the operation site (seroma)

Sometimes fluid continues to collect near the wound after your wound drains have been taken out. This is called a seroma. It causes swelling and pain and can increase the risk of infection. The fluid usually goes away on its own. Sometimes a nurse needs to drain the fluid off with a needle and syringe. They may need to do this a few times.

For some women, the fluid takes a long time to go. It can take up to a few months after your surgery.

Nerve pain

You may have numbness or tingling in your upper arm, particularly if you had your lymph nodes removed. This is normal and happens because some nerves are cut during the operation and need to repair themselves. It can take a few weeks or months to go. If it continues, get in touch with your breast care nurse or surgeon.

Swelling of your arm or hand

You may have some swelling in your arm or hand after your operation. This is normal. But it should start to go away as you do the exercises (see below) to get back the movement of your shoulder and arm.

If you continue to get a lot of swelling, heaviness, pain or tenderness in your arm or hand, let your breast care nurse or surgeon know as soon as possible. After surgery or radiotherapy to the armpit, there is a risk of developing permanent swelling called lymphoedema. Once you have lymphoedema it can’t be cured but early treatment can effectively control it. Look at the information about lymphoedema page for ways of preventing lymphoedema.

Scar tissue in the armpit (cording)

Some women develop scar tissue in the armpit (axilla), which forms a tight band. This can happen 6 to 8 weeks after the operation. The scar tissue is called cording or banding and can feel something like a guitar string. Cording is harmless but can be uncomfortable. It can get better after some time if you massage the area of the scar tissue. Your specialist nurse or a physiotherapist can teach you how to do this.

This great advice was shared with us by the fabulous physiotherapist Liesbeth Raymakers

 

 

Keeping the balance

Over the next couple of weeks, we will be posting a series of recipies that will help you as you go through treatment. The Cancer Lifeline recipies are divided into three phases:

• Tough Times, for use when you are very ill, during treatment, while the appetite is poor and the weight low.
• Clean Machine, for detoxification of the body, post cancer treatment, or to kickstart a holistic health creation programme.
• Eat Right, to set the right style of eating for the rest of your life to generate optimum health.

The recipies have been created by celebrity chef and nutrition consultant, Jane Sen, for the nourishment and healing of people with cancer. The recipies are part of the Cancer Lifeline Kit by Dr Rosy Daniel, which she has generously shared with us.