What is normal?

Let’s normalise a few things right now:

• There is no “right way” to make sense of what a cancer diagnosis means in anyone’s life
• We can’t expect everyone to react in a similar way, or say the same things as anyone else – each person is unique and of course their response to their cancer treatment will be individual as well;
• It’s very common for people to feel confused, disbelieving or angry when newly diagnosed, but this is not true for everyone;
• Sometimes our bodies even respond to the stress and shock with physical responses – headaches, nausea, diarrhea, sighing, poor sleep patterns etc; and
• Often people look forward to the end of treatment, but sometimes folks feel fearful, uncertain, or more emotional than they did during the treatment.

Blog by Clare Manicom, Oncology Social Worker

The importance of psycho-social care

First up, let’s be clear that our precious family members and our special friends cannot be our therapists.  The honest ones among them will tell you that they really don’t want to be our counsellors either – they just want to be their normal selves – mom, friend, cousin etc.

Then, while we’re being honest – most of us try to protect the people we love from the ugly, ungrateful, hurtful, or dark thoughts that we have around the topic of cancer, its treatment or an uncertain future.  Which makes it hard to truly share with any one person exactly what we’re thinking or feeling.

• We edit what we share
• We filter what we hear
• We are selective about what we remember

So suddenly it’s very clear that actually, it’s pretty tough chatting through our deep emotions with people who are important to us.  We might not have the words to say what we’re feeling, we might not know what to think.  We usually don’t even know where to begin with our emotional “stuff” that we’re told we have to “deal with”.

And that, very simply, is why it is so helpful to meet with a neutral, objective, trained and skilled person when you’re feeling scrambled, low, overwhelmed or plain pissed off.  It is a huge relief to offload on someone whose job it is not to judge you, but to listen to you.  Their job is to calmly provide a safe space where you can say what’s on your heart, cry or rant without hurting anyone’s feelings.

There will be times when that professional needs to challenge your opinions or perceptions, or may need to provide you with clear information that will help set you on a better path.  There are times that your listener may probe a little deeper, or may ask you questions that make you think and reflect more carefully – all this is part of your healing journey.

Seeing someone for emotional support might mean having a few sessions to examine different issues or concerns, or practice new skills in between sessions.  You will not always come away from a session smiling and jumping for joy – sometimes we need to have a “heavy session” that may include tears or rage, as a catharsis.  What you should feel every time is that you have been heard and acknowledged as an individual.  Often you will feel a sense of relief or lightness that you’ve been able to speak your mind – you’ve been brave and honest enough to express yourself and that is an important beginning point…

A social worker with medical or oncology experience will be able to provide emotional support with an understanding of the psychological impact of cancer and its treatment, as well as having insight into some of the practical challenges that people face.  Most State oncology departments employ social workers, and some private practices offer this service as well – ask your oncologist and ask again if you’re not given names to contact!

Some people are keen to join a support group when facing their illness and treatment.  As these groups are run in different ways by different organisations, ask your local clinic about what may be available in your area.  Remember that groups run for the purpose of sharing information are not designed to provide in-depth emotional support, so make enquiries about the purpose of the group, and about who runs it to help you decide whether it’s a comfortable place for you to be or not.

Social media may also be a source of general support but it’s advisable not to risk your in-depth personal emotions in a public forum, or to take advice from people who may not have the professional skills or training to provide psychological support.

Blog by Clare Manicom, Oncology Social Worker

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

 

 

 

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.

The DITTO project

The Ditto project is an initiative run by Reach for Recovery to provide indigent women access to a silicone prosthesis which helps to restore her self-image and confidence after the traumatic breast cancer diagnosis and surgery.

Surgery after a breast cancer diagnosis may involve part or all of a breast being removed (mastectomy). Having a mastectomy leads to a tier of decision making regarding whether to have surgical reconstruction, wear an external breast prosthesis, or not wear anything at all to replace the amputated breast.  External breast prosthesis may be the best option a woman has, especially if she cannot afford to undergo reconstructive surgery.  However, not all patients can afford the cost of a permanent prosthesis.

Reach for Recovery believes that all women who have had breast cancer surgery should have access to appropriate breast prostheses, regardless of whether they can pay for it or not. The reality is that many breast cancer patients in South Africa cannot even afford a bra, let alone a breast prosthesis. Reach for Recovery wants to help these women who come from low income groups to feel confident again after the traumatic diagnoses and surgery.  We believe that a breast prosthesis is an important step in her recovery, especially to those women from communities where a there is still a stigma attached to a cancer diagnoses.  A more natural appearance with a breast prosthesis, together with the emotional support that she can continue to receive from Reach for Recovery volunteers through support groups, will help her to return to her place of employment and continue to provide for her family.

Any breast cancer patient who can present a current Provincial Hospital Card qualifies for access to subsidised silicone prosthesis.  The patient is asked to make a donation of R80 towards the project (R160 in case of a bilateral).   However, no patient has ever been turned away because she could not afford to make a donation.  The prosthesis may be replaced after three years.

Unfortunately Reach for Recovery cannot provide the paying customer with an invoice to claim back from their medical aid as we do not have a Medical Practice Number.  However, we do offer as much support as possible in terms of general information on local and international manufacturers, suppliers etc.

The Ditto Project started in 2011.  Since then, a total of 3235 silicone prostheses costing more than R2 million were given to women who could not afford one.  Many women donated a small amount (R80) as a token of their gratitude, but we also supported women who could not afford any donation at all.

Apart from state patients, a growing number of women only have a Hospital Plan which does not cover breast prostheses. Pensioners are particularly hard hit.

We have also seen a steady increase in the number of women needing silicone prostheses since 2011:  from 475 in 2011 to 930 in 2015.  There is without doubt a growing need for this service.   Unfortunately a silicone prosthesis is guaranteed to last for only two years; therefore we are also experiencing women returning to Reach for Recovery to have their prostheses replaced.

The need for silicone prostheses for newly referred breast cancer patients plus the need for replacements impacts heavily on the funds that we use to subsidise these products. A needs analysis has shown that we would subsidise at least 1000 women with a new silicon breast prosthesis in the new financial year.  This includes women who would need a replacement.

We are extremely thankful to our donors who help us to ensure the sustainability of this project!

Reach to Recovery is one of the breast cancer organisations that is a part of ABC.

 

Rice porridge for the tough times

Creamy rice porridge

Delicious, nutritious and comforting. Traditional oat porridge is good too but try this one for extra food value. It is well worth the investment in a small ‘slow cooker ‘as it will be perfect at breakfast time. It keeps for 2 or 3 days in the fridge. Re-heat with a little extra soya milk or enjoy it cold with maple syrup, a chopped banana and a sprinkle of sesame seeds.

2ozs (50g, generous ½ cup) brown rice

2 pints (1 litre) soya milk

Handful of dried fruits (optional)

Cook overnight in an electric slow cooker. If you do not have an electric slow cooker then just bring to the boil in a nice heavy casserole, lower heat to barely simmering, cover and cook for 2 ½ hours. You may need to add a little more soya milk. You can also pop it into a low oven for about 3 hours.

Serve with a little maple or date syrup or compote of fruit.

You can add any dried fruit you like – it is especially scrumptious with apricots or dates.

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 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