Dealing with Osteoporosis in Britain

Cancer can make you feel like murdering someone

This website was set up to try and tell browsers about the fun things we can have to help with cancer problems – but occasionally I get depressed when turning to medical professionals for help, and a nurse patronisingly says “I can hear you are frustrated”.    I want to SHOUT “well, do something about it”.

My Oncologist put me on Arimidex and warned me that I could get osteoporosis.  I accepted this, tried to keep healthy and exercise, but the most recent DEXA scan showed I now had Osteoporosis.  He put me on several different drugs, all of which made me vomit constantly, and I am now on Protelos – less vomitting but I lose my fingernails.  So wonder what this is doing to my bones?

I must do something to improve my overall health, I thought.  I turn to ‘my’ hospital, imagining they will be able to offer me professional help.

Easier said than done.  I phone ‘my’ hospital. As I have Osteoporosis, is there a programme I could go on?  NO.  Could they tell me who was their expert on Osteoporosis?  No, they didn’t have one.

“But hormonal drugs for cancer often induce this”.

“We don’t have anyone.”

“Can you tell me where I find someone who could help me?”

“No”.  (This was hospital where nurses have told me and others, “you are ONLY a patient”).

So, as a patient, I have to find out for myself.  Surely it shouldn’t be left to us?  No wonder so many of us turn to ‘supplements, miracle foods, light therapy’ and all the other unproven remedies.

How the NHS could help US – without costing much

Get the Team to work together for OUR benefit.  Devise a programme with

  • Nutritionists to tell us what we should be eating
  • Physios to give us an introductory session in the gym, explaining what type of exercise we need
  • Remind us when we need Bone Density tests – it shouldn’t be up to us to do this
  • And get Pharmacists to explain how and when we should take those awful pills – and monitor us and help with side effects

Simples – as the Meerkats say.

Eventually I go back to the original doctor whom my Oncologist recommended to deal with my vomitting etc. and find he is a Rheumatologist and has an Osteoporosis clinic (I thought he just dealt with vomitting etc), and wonder why I wasn’t told to contact him again.  Why did I have to work this out for myself?

So am off to see him, which is a delightful experience as he stands up when I came in the room;  listens, never gives the impression he is rushed, asks  sensible questions, and I feel more confident.

But why should our confidence be dented, and why can’t we get seemless treatment with a referral on to someone who will help, rather than have to find this out for ourselves?

If this happens to you – here is step by step what I did when looking for help

  • First stop was to find a Rheumatologist
  • Then ask if they deal with Osteoporosis
  • If you can’t find one, contact the National Osteoporosis Society and ask their Regional Managers for advice  www.nos.org.uk
  • Being a cautious soul,  after the NOS’s website, I then go on to the American sites – National Institute of Arthritis  http://www.niams.nih.gov/Health_Info/Bone/Osteoporosis/default.asp.  They say:

Women who have had breast cancer treatment may be at increased risk for osteoporosis and fracture for several reasons. First, estrogen has a protective effect on bone, and reduced levels of the hormone trigger bone loss. Because of chemotherapy or surgery, many breast cancer survivors experience a loss of ovarian function and, consequently, a drop in estrogen levels. Women who were premenopausal before their cancer treatment tend to go through menopause earlier than those who have not had breast cancer.

Studies suggest that chemotherapy also may have a direct negative effect on bone. In addition, the breast cancer itself may stimulate the production of osteoclasts, the cells that break down bone.

Osteoporosis Management Strategies

Several strategies can reduce one’s risk for osteoporosis or lessen the effects of the disease in women who have already been diagnosed.

Nutrition: Some studies have found a link between diet and breast cancer. However, it is not yet clear which foods or supplements may play a role in reducing breast cancer risk. As far as bone health is concerned, a well-balanced diet rich in calcium and vitamin D is important. Good sources of calcium include low-fat dairy products; dark green, leafy vegetables; and calcium-fortified foods and beverages. Supplements can help ensure that the calcium requirement is met each day, especially in people with a proven milk allergy. The Institute of Medicine recommends a daily calcium intake of 1,000 mg (milligrams) for men and women, increasing to 1,200 mg for those age 50 and older.

Vitamin D plays an important role in calcium absorption and bone health. It is synthesized in the skin through exposure to sunlight. Food sources of vitamin D include egg yolks, saltwater fish, and liver. Many people obtain enough vitamin D by getting about 15 minutes of sunlight each day; others, especially those who are older or housebound, may need vitamin D supplements to achieve the recommended intake of 400 to 600 IU (International Units) each day.

Exercise: Like muscle, bone is living tissue that responds to exercise by becoming stronger. The best activity for your bones is weight-bearing exercise that forces you to work against gravity. Some examples include walking, climbing stairs, weight training, and dancing. Regular exercise, such as walking, may help prevent bone loss and will provide many other health benefits. Recent research suggests that exercise also may reduce breast cancer risk in younger women.

Healthy lifestyle: Smoking is bad for bones as well as the heart and lungs. Women who smoke tend to go through menopause earlier, resulting in earlier reduction in levels of the bone-preserving hormone estrogen and triggering earlier bone loss. In addition, smokers may absorb less calcium from their diets. Some studies have found a slightly higher risk of breast cancer in women who drink alcohol, and evidence suggests that alcohol can have a negative effect on bone health. Those who drink heavily are more prone to bone loss and fracture, because of both poor nutrition and an increased risk of falling.

Bone density test: A bone mineral density (BMD) test measures bone density in various parts of the body. This safe and painless test can detect osteoporosis before a fracture occurs and can predict one’s chances of fracturing in the future. The BMD test can help determine whether medication should be considered. A woman recovering from breast cancer should ask her doctor whether she might be a candidate for a bone density test.

Sadly, we are not alone when having to search out medical help.  The Conservatives promised to bring our health services up to European standards.  I just hope they do, and this wasn’t a promise that is being ‘lost’ in the Coalition bundle.

Breast Cancer Care also has an excellent 12-page leaflet which you  can down-load on http://www.breastcancercare.org.uk/upload/pdf/bcc_osteo_web_0.pdf

With thanks to the National Osteoporosis Society for their logo at the top of the page – which says it all.

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