Practical tips and links

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Cancer: Practical Tips and Information

General

Macmillan Cancer Support

Cancer Research

Cancer.net

Royal College of Radiographers guide to scans and treatments

NHS website

Breast Cancer Care

Breakthrough Breast Cancer

Penny Brohn Cancer Care website - range of products and courses covering alternative treatments. There is a free self-help starter pack.

Do you have some helpful advice to add? Please submit a comment on the HOME page.

Breast Surgery (Mastectomy)

Tips for preparing for a mastectomy
  • I found that lifting things down from shoulder height particularly difficult straight after a mastectomy. In the kitchen, I had plates in a wall cupboard, that I had to move lower down. Loading and unloading the washing machine was also difficult. It took a little while to get the strength back for ironing.
  • Consider getting the shopping delivered. Ocado sometimes has good discounts.
  • Use a soft, comfortable bra for the first few weeks after the operation. The comfy (cloth padding) is worn inside a normal bra. The fitting for the silicone prosthesis is done after about six weeks, and this slides into a mastectomy bra with a special pocket to hold it in place.
  • Movement of the shoulder is a bit limited in the early days, so pick clothes for hospital that are easy to get on and off eg button up pyjamas.
  • Ask if the painkillers etc may have side-effects eg constipation so you can choose what to eat accordingly
  • Take the arm exercises seriously - and don’t lapse. I started swimming when things had healed up which helped me stay flexible and may help with lymphodema.
  • I couldn’t drive until the scar had healed
  • Consider getting a prosthesis fitting with a professional fitter if you live near one; the one I went to really took the time to get the right match of shape for me - I took details of the prosthesis and then ordered it through the NHS. They can also advise on mastectomy bras and swimwear, which is very useful first time round. From then on, I felt able to buy from the internet as I had a good idea of the necklines and shapes I was looking for
Clothing & prostheses, swimwear, mastectomy bras

Amoena - mastectomy lingerie, swimwear, lounge wear, prostheses and breast forms, headscarves, discussion forum; also produce an informative magazine; fitting service in Southampton area. Free returns in UK.

Nicola Jane - mastectomy bras, swimwear, fitted tops, prostheses; shops in London, Leeds and Chichester with fitting service. Free returns in UK.

Eloise Lingerie - mastectomy lingerie and swimwear, fitting service in Wimbledon (London)

Womanzone mastectomy swimwear and lingerie

Contura belle mastectomy bras and accessories

I have purchased my prosthesis, swimwear, nightwear (loungewear), bras and nipples from amoena.  Free returns in UK.

Nicola Jane sells a foam swimwear prosthesis for about £10, which I found was good value and worked well for me. I have also bought bras from here. Free returns in UK.

I tend to avoid v-necks and button-up shirts, as mostly the buttons finish too low down. I did find a really good shirt from Rohan , where the buttons go much higher (and it is also sun-protective) . It just stops me worrying if I lean forward – though I’m probably the only one who is aware of a bit too much showing! Now it’s getting hotter, it is nice to find a blouse where I don’t need to wear extra underneath. Round necks, jackets over t-shirts or under-pieces, or tight-fitting vests under blouses work best for me. I avoid horizontal stripes, and tend to go for patterns if possible. I find it fairly hard to buy blouses over the internet, because I like to be sure of the fit, the neckline, and how see-through the fabric is. I generally go for one layer that is tight fitting, as I am “well-built”, as the surgeon put it (DD cup), so that everything remains under wraps even if I lean forward.

Country Casuals has a wide range of evening wear and smart formal and informal wear with a range of necklines - a useful starting point for looking for styles online. Sale in August. Free returns.

Marks and Spencers has a good range of high-neck t-shirts and lycra-based vests.

Eastex have a sale in June, and have some patterned round neck tops that look smart. There are also some light jackets that can be worn over light tops for summer.They are also in Debenhams.

Clothing tape might be an idea for holding clothes in place, but I haven’t tried it. There is some on the John Lewis website. Braza clothing tape is also avaliable from the House of Fraser website.

To protect your arms from scratches when gardening, there are gloves with cotton sleeves attached on the Organic Gardening site.

Mastectomy and swimming

Check the sizing – for some catalogues they recommend going a size larger than you would normally wear. There is advice in the catalogues or the websites – this may be because I’m looking for a D cup.

For some swimsuits, you can say which side you need the pocket - check when you are placing the order.

Choices for those above C cup are limited. Bikinis don’t seem to be an option. I ended up getting a sports bra and using a rash vest on top if I wanted to wear two pieces.

Look for free returns – you need to be really sure of a good fit.

There are different cuts – I go for a very high neckline and modest round the arms to cover the scar.

Nicola Jane sells a foam swimwear prosthesis for about £10, which I found was good value and worked well for me.

Chemotherapy

Blood counts - more explanation, and range.

My experience of receiving chemotherapy….

I sat in a chair which is a bit like a dentist’s chair. Initially blood tests are taken to make sure all the blood counts are in range. There is then a wait whilst this is checked. Once these are deemed to be satisfactory, the chemo is administered. In my case, this was through the arm. However, there were difficulties, and so I was later fitted with a portacath. The drug is then administered, taking maybe a few hours.  There is a monitor which beeps when the drug has almost gone, or the delivery is too slow. I suffered slight sickness a few days afterwards and so was given anti-sickness drugs. I found the chair uncomfortable and took a cushion with me. There was a visitor chair, of a very functional style.

Wigs and headscarves, hair loss

Breast Cancer Care produce a really useful booklet about hair loss that can be downloaded. It covers wigs, headscarves, eyelashes and eyebrows, suppliers and more. They also promote a HeadStrong programme in parts of the UK to support people going through hair loss.

The Cancer Research UK site gives information on Hair loss, hair thinning and cancer drugs, and also on Hair loss and wigs with a list of suppliers in the UK.

Cancerbackup/Macmillan has a section devoted to hair loss, which includes suppliers, scalp cooling, choosing a wig, headscarves, and children & teenagers.

Trying a new hairstyle

There are some websites were you can upload your photo and then try different hairstyles to get an idea of what might suit you before going for a fitting (when searching the web, enter virtual hairstyles).

The Natural Images site had a page suggesting what styles suit different face shapes.

Tips for choosing a wig
  • Wigs do come in quite short styles, but be careful that it doesn’t sit on your collar, and so get nudged out of position when you wear it
  • Have a friend at the fitting - I found it quite daunting facing up to hair loss, and it also helps to have someone else’s opinion on what suits you
  • Get a fitting before hair loss sets in - the fitter can see what your own hair looks like, and also it may take time before the wig is delivered to you.
  • Wigs can be trimmed - so if the wig you see needs minor changes, this may be possible
  • I had two wigs, so I was able to alternate whilst one was washed and recouperated.
  • There is wig shampoo and conditioner to help keep the wigs looking fresh (eg Natural Image)
  • Once you have a wig, take care with removing things over your head- I almost came a cropper when absent-mindedly removing my security pass which is on a necklace
Where to buy wigs and headscarves

To get an idea of what is possible, I found the Natural Images website a good starting point for wigs, and Bohemia Fashions had a good range of scarves.

In the UK:

There is a list on the Cancer Research page. Includes suppliers of wigs (manmade and human hair), fringes, headscarves, hats, bandanas, turbans. There are also details of a wig bank, where people donate wigs that they no longer require, and these are then washed and conditioned, and are then available for sale or hire.

The cancerbackup list of suppliers covers places where you can get wigs, bandanas, scarves, afro caribbean wigs, hats, headwear, turbans and false eyelashes.

Yellow Pages can be a starting point for finding a supplier in a locality. I found using chemo as one of the keywords helped narrow down the search.

The oncology nurses, or leaflets at the hospital may also provide information on local suppliers. I found I needed to plan in advance, so that the wig arrived before I desperately needed it.

Amoena - has some headscarves as well as their mastectomy clothing range.

In the US, TLC has hats, headscarves, turbans, liners for wicking away, sleep hats, wigs and fringes, and swimcaps; there is also mastectomy wear. This is a not-for-profit site, linked with the American Cancer Society.

Making your own headscarf

McCall’s do a pattern (4116) for a turban, headwrap and cap.

Tips for choosing a headscarf
  • It is important that the headscarf feels secure. Cotton is better than a more slidy material.
  • I had a headscarf that had long ties that could either be tied in a bow at the back, or brought round and tied at the front. As I lost more hair, being able to tie it quite tightly at the front was good.
  • I was lucky to keep my fringe; you can buy fringes to go under headscarves.
  • I bought my headscarf from the same place as my wig
  • Examples of fringes for use under hats and hairpieces can be found at Headcovers Unlimited.This site also has a wide range of head scarves.
Epirubicin (and other chemo treatments)

Macmillan Cancer Support; Cancer Research UK

capecitabine

Oral chemotherapy. I have been given a regime of 2 weeks on, one week off. I have two 150 mg tablets twice a day, and three 500 mg tablets twice a day. Was given codeine phosphate, pyridoxine, antepsin, domperidone and metoclopramide at the same time. The pyridoxin is one tablet 3 times a day, the others are as required. Side effects may include nerve pain in the fingers.

Radiotherapy

May be worth using slip on shoes for radiotherapy sessions, depending on how much clothing needs to be removed, so you can walk across to the treatment bed.

Sun protection clothing & high-neck shirts

Outdoor clothing suppliers make clothing which has a high sun protection factor. This means I don’t need to worry about the sun getting through the clothing and if I dress sensibly I can avoid using sun cream where I’ve had radiotherapy and don’t need to worry about the sun penetrating clothing. For instance, in strong sunshine I wear one of the (high sun protection factor) t-shirts, which have a high neckline and then also have a lightweight walking shirt that I can put on top for extra protection. The clothing is very practical, usually being lightweight and travels well - the items I have don’t crumple, wash and dry easily and don’t need ironing.

Rohan

Craghoppers

Berghaus

M & S

I have t-shirts, walking shirts and trousers from Rohan. Sale in July.

Rash vests might be worth considering for holidays - they tend to be high SPF (sun protection factor) and suitable for getting wet eg putting over a swimming costume. I have some Gill rash vests - one with short sleeves, one with long sleeves. These are available from watersports suppliers - they are worn under wetsuits for comfort.

Skincare products

Simple products, recommended by nurses during radiotherapy, especially the soap.

Aqueous cream was also recommended.

There are a range of deodorants which may be simpler, gentler and don’t contain aluminium.

Crystal produce a crystal body deodorant stick, which is perfume free, aluminium free and just needs to be dampened to use. I have found this effective. It works by neutralising the bacteria which cause odour. Suppliers are listed on the website.

Bionsen produce a Japanese spa minerals deodorant spray which I like, and is aluminium-free.

Sun cream - factor 50: E45 or uvistat

Onestop Natural shop has a range of natural products, including the Crystal Stick.

Nature’s Boutique also supply a range of natural products including the Crystal Stick.

Hormone therapy
Tamoxifen

Cancer Research UK; Macmillan Cancer Support; Wikipedia;

Goserelin/Zoladex or oophorectomy

Breakthrough Breast Cancer info; Macmillan website information; patient.co.uk information

drugs.com gives a detailed description of zoladex, and a comparison with having surgery (oophorectomy).

Other discussions weighing up zoladex and oophorectomy can be found at  MedHelp (technical), and  Breast Cancer Care - personal experiences.

I started with 3-monthly injections, but  my feeling was that my hormones were still fluctuating. I then moved to monthly injections; this was better but still not perfect, and also arranging to get the injections on the right day was more difficult. Because I did not have complete confidence in the injections, I opted for the surgery. I was in overnight (though it can be done as a day case). Recovery was quick - back to work a couple of days after. I did not suffer any menopausal symptoms but this may be because I had already experienced zoladex? Shortly afterwards I had problems with my bones, but this may be coincidental and not related.

letrozole (femara):

The risk of osteoporosis may need to be taken into consideration when using letrozole.

Scans

Royal College of Radiographers guide to scans and treatments

Consider wearing slip on shoes or slippers for the walk from the changing area to the treatment room. I tend to carry a rolled up blanket in front of me once I have removed my prosthesis.

Bone scan:

Need to allow a few hours as you may be given an injection prior to the scan which has to have time to work.

Ultrasound:

Cancer Research, Royal Marsden

CT scans:

May need to have a prepared drink slowly for an hour before the scan. May need to avoid eating for several hours before the scan. I had an injection just before the scan, which made me feel a bit warm as it goes round the body.

netdoctor.co.uk , Cancer Research UK.

PET CT Scan:

Cancer Research, Royal Marsden, wikipedia

MRI Scan:

I was not required to fast, have a drink or injection before this scan. Once changed into a gown, I selected some music from a list I was given. Once the scanner is on, it is noisy. Sometimes it is a pulsing noise, sometimes more like a drill. I had two scans which took about 15 mins each. I was positioned on the scanner bed, with a foam wedge under my knees and a head rest, and headphones on. A plastic guard was put round my head - I was not aware of it once it was in place. Then the bed is moved into the scanner. I was given a panic button to hold. Once the scan starts, I found it quite cocoon-like; I concentrated on the music and tried not to think about being still. Instruction are interspersed with the music, giving you guidance about what stage the scan is at.

Inflammatory Breast Cancer

- for more links, please use the IBC tab

Inflammatory Breast Cancer Research Foundation

Cancer.Net

IBC support website

The Inflammatory Breast Cancer Foundation

The University of Texas MD Anderson Cancer Center

National Cancer Institute; Inflammatory Breast Cancer Questions and answers

Breast Cancer Network of Strength

Stage IV, metastasis

Advanced Breast Cancer Support Community for those with advanced/metastatic breast cancer.

BreastCancer.org forum

Metastases: Secondary Liver Cancer (liver mets)

Macmillan Cancer Support - covers general description, diagnosis, treatment and support.

Metastases: Secondary Bone Cancer (bone mets)

For me, the bone cancer in my pelvis felt like arthritis. My hip joints became stiffer and I started limping. It did not feel like the initial spread of the bone cancer, which felt like it was running through the middle of my bones, and I could feel it spreading through my body. In my lower rib, it felt like I was being jabbed with a knitting needle. In my spine, it felt like I was lying on pebbles.

Macmillan Cancer Support: covers general description, diagnosis, treatment, support.

Breast Cancer and Bone Health: optimum care of osteoporosis - a detailed explanation of all the issues and treatments relating to bone metastases.

Guidelines for the Prevention of Osteoporosis in women

Bondronat/ibandronic acid: Macmillan Cancer Support

Dental concerns with using bisphosphonates

I initially had zoledronic acid injections, then moved on to bondronat (ibandronic acid) tablets. I stopped for a while, but when the bone cancer needed treatment, restarted. I now have one daily. I have it just before I go to work, and then have my green tea and some fruit when I get to work. This ensures that I don’t eat before having the tablet, or for at least 30 mins afterwards, and I also don’t have to worry about the other requirement of staying upright for an hour.

Sources of calcium

  • Cheddar cheese, Cow’s milk
  • Dried Figs
  • Tofu, Baked beans, Chick peas, Soya cheese
  • Tinned Sardines, tinned pilchards, tinned salmon
  • Sesame seeds
  • Nuts especially almonds
  • Cooked spinach, Cooked broccoli, Raw Okra, Cooked curly kale

Vitamin D is also required for absorption – this can be from sunlight, or eggs and oily fish.

Support for families

Winston’s wish

- guidance for families with children facing bereavement

Riprap: a website aimed at the 12-16 age group, where a parent has cancer.

I also got support and advice from my local hospice, and a local cancer charity. Both offered counselling.

Disability Living Allowance

Free Prescriptions for cancer patients

UK Government information for disabled people, including employment, education and learning, motoring and transport (blue badge scheme and motability), adaptations and equipment for your home, travel advice including taking medication abroad and accessibility, finance including DLA - disablity living allowance and attendance allowance, health and support.

For the blue badge for parking, there is a form available from the local authority website. This needs to be printed off, and sent away with 2 passport size photographs and £2. If you receive maximum disability living allowance due to mobility issues, then you need evidence of this, but do not need to provide additional medical details. More details about the scheme can be found here. To go to your local authority website, to apply, click here.

Events in support of cancer charities

Marie Curie Cancer Care - fancy a swimathon, Devoted to Life walk, UK Mountain challenge or host a special tea party (June 12 to July 12). The Great Daffodil Appeal takes place throughout March. Help provide more nursing care for patients with terminal cancer.

Moonwalks are taking place in London and Edinburgh, and SunWalks in Bristol and Newcastle raising money and awareness for breast cancer causes.

Cancer Research - Race for Life - walk, jog or run 5K - many local events being held in June or July.

Macmillan - Big Picnic in June, or the World’s Biggest Coffee Morning in September.

Breakthrough breast cancer - pink ribbon fundraising during Breast Cancer Awareness Month. Crocus walks are an enjoyable way of fundraising.

Miscellaneous

Travel Insurance for cancer patients

Macmillan advice on organising travel insurance

Cancer Research advice including a list of specialist insurance companies

Cosmetics

Bionsen Deodorants - aluminium free

Simple products, recommended by nurses during radiotherapy, especially the soap

Tom’s of Maine - deodorants that are aluminium-free based on hops, and toothpaste that is based on natural products, with all the ingredients described.

drhauschka - made from natural ingredients; range of skin care and make up products

Sun cream - factor 50: E45 or uvistat

Medical ID tags

Universal Medical ID

MedicalTagsUK

Book Reviews

Books I consult most often…many available from the Penny Brohn Cancer Care shop.

The Cancer Directory, by Dr Rosy Daniel. I particularly like the lists of things you might like to ask your doctor at each stage of treatment. Factual, broad-ranging and easy to go straight to a topic you want to find out more about. Contains descriptions of some of the newer treatments. Also discusses alternative approaches, including beneficial foods.

Available from Amazon, Penny Brohn Shop

Your life in your hands, by Professor Jane Plant. The author uses her personal experience of cancer as a starting point for researching how lifestyle factors such as diet may impact health. It is detailed and I found it reassuring that she had looked into so much research. I made changes to my diet after I read this, and have stuck to them because I found it convincing and also it gave me a feeling that I was doing something to help my body fight the cancer.

Available from Penny Brohn shop, and Amazon

The Breast Cancer Prevention and Recovery Diet, by Suzannah Olivier. The author has faced breast cancer, and brings insight from her role as a nutritionist. As well as discussing foods that promote health and those that may have anticancer properties, there is guidance on different cancer treatments and how to minimise side-effects and help your body through nutrition during the treatment. Practical and detailed.

Eat to Beat Cancer, by Jane Sen and Dr Rosy Daniel. Contains information on good and bad foods; written in a style that I found approachable and it helped me buy in to the change in diet, and therefore be able to stick to it. Includes recipes and practical information on how to get started on making changes.

Available from Penny Brohn shop and Amazon

anticancer a new way of life by Dr David Servan-Schreiber, discusses lifestyle changes in the approach to food, and also mind and body. Thought-provoking and looks at issues both from a medical viewpoint and as someone who has had cancer.

amoena magazine - back issues (can be ordered from the amoena website)

All magazines have reader-led discussions on cancer related topics such as the effects of some medications such as herceptin, arimidex, capecitabine, tamoxifen, arimidex, letrozole(femera); surgery and reconstruction; dairy-free diets.

  • 17: coping with chemotherapy
  • 18: Mind over mirror - change the way you see yourself
  • 19: what’s breast reconstruction really like? (Very helpful article covering the different methods, clear photos and personal experiences). The life coach gives advice on handling the emotional effects of breast cancer
  • 20: how younger women face up to breast cancer; guide to complementary therapies
  • 21: how breast cancer changes young women’s lives; how to keep your cool when hot flushes strike; guide to skin and hair care during radiotherapy
  • 22: when bilateral surgery is the only option; the story of a partner; has breast cancer turned your life upside-down?
  • 24: post-surgery blues; guide to choosing the right breast form
  • 25: when radiotherapy bites back; how are you really feeling?
  • 26: facing breast cancer the second time round; is there a link between stress and breast cancer?

You are what you eat, by Dr Gillian McKeith - accompanies the TV series. Frank and to the point, an introduction to changing eating patterns.

Living Food for Health, by Dr Gillian McKeith - picks out 12 superfoods and focusses on what the benefits are, and recipes. Some of the foods are ones that I haven’t encountered before, but the recipes are simple and straightforward, which encourages me to give things a go. I quite like the focus on a small number of foods - I have a go at one each week.

Cancer Battle Plan, by Anne Frahm

The Complete Guide to Gluten-free and Dairy-free cooking, by Glenis Lucas. Packed with recipes, covering raw and cooked foods, and desserts.

The Complete Book of Juicing by Michael T Murray. Covers a wide range of fruit and vegetables, explaining how to select them, prepare them, the health benefits, and juicing recipes.

Juicing for health by Caroline Wheater. Contains some helpful tips on how to choose a juicer. Has a section organised alphabetically by fruit/vegetable, with suggestions as to whether it can be juiced on its own or what to mix it with, and details of the associated vitamins and minerals. There are recipes for making different juices, and some recipes.