There is a genetic condition called familial hypercholesterolemia (FH). It is an autosomal dominant disorder that produces severe elevations in total and LDL cholesterol. The DNA in our cells is packed into chromosomes, which occur in pairs. Autosomal comes from the word “autosome” which means all chromosomes other than the sex chromosomes. Dominant means that only one parent needs to contain the defective gene to pass it on to their offspring.

Heterozygous familial hypercholesterolemia occurs in approximately 1in 500 people worldwide, and it causes an approximate doubling in LDL cholesterol levels.

Heterozygous means that only one defective gene is present for a condition, so it usually produces a less severe case of the disease. In other words only one parent passed the condition on, rather than both parents. FH is especially common in French Canadians, Lebanese, South Africans and Ashkenazi Jews.

In FH the LDL receptors are either missing or deformed. These receptors are required in order for the liver to take up LDL that has been floating in the bloodstream, process it and remove it from the bloodstream. If the liver can’t take up LDL particles, blood levels quickly rise. Also, if LDL is not able to get into liver cells, it can’t suppress the production of more cholesterol, therefore greater amounts of cholesterol are produced, and blood levels rise. In people with heterozygous FH, only half the normal number of LDL receptors is present. Commonly, levels of LDL cholesterol will be between 5.1 and 10.3 mmol/L. In normal healthy people LDL cholesterol should be no higher than 3.5 mmol/L. People with heterozygous FH typically develop premature coronary artery disease; men typically in their forties, and women 10 to 15 years later.

Homozygous familial hypercholesterolemia is a much more severe case of the disease, as both genes are defective. It affects approximately one in one million people. In people with this condition sudden death due to a heart attack occurs as early as age 1 to 2 years.

High blood levels of LDL cholesterol in people with FH means that various cells in the body that do not require LDL receptors, take up and absorb cholesterol. This includes monocytes and macrophages, which can turn into foam cells and lead to the production of fatty plaques in the arteries.

People with familial hypercholesterolemia often display telltale signs on their bodies called xanthomas. The word xanthoma is derived from the Greek word xanthos, which means yellow. Most xanthomas have a yellowish appearance, but this isn’t always the case. They are basically deposits of fat, connective tissue and blood vessels in and under the skin which grow on various sites of the body. People with familial hypercholesterolemia typically develop xanthomas on their Achilles tendons and tendons on the hands. Sometimes a xanthoma develops on the inner side of the eyelid; this is called a xanthelasma. An iridologist looking in the iris of a person with FH will usually see an arcus senilis, this is a cloudy ring on the outer border of the iris. There are several other genetic conditions besides FH which produce severely elevated levels of LDL cholesterol.

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If you experience more difficulty than usual getting around the house you might consider making up a temporary ‘bedroom’ downstairs, as climbing stairs uses a lot of energy. If your bathroom is upstairs, then this may be less practical although you may be able to borrow equipment to solve this problem. The district nurse at your doctor’s surgery will be able to advise you, perhaps in conjunction with an occupational therapist (who will know about specialist equipment or useful aids to make practical tasks easier for you).

There may be other equipment or small changes at home which would make a big difference to you. An adapted lavatory seat, a special cushion to sit on, the installation of handles to help you out of the bath, a new stair-rail or a walking frame to give you extra confidence are some examples. These may all be temporary measures, but can help you to feel less physically confined.

Experiencing reduced levels of energy is very common, and it will make a big difference if you are able – and willing – to rely on others more than usual. Getting up to fetch a book or make a cup of tea or prepare a snack may be more difficult than before, and although you may hate to feel like an ‘invalid’, it is often a relatively short-term problem. This does not mean that others will be constantly running around for you, nor that you should worry about ‘being a burden’ to them. Remember that you are undertaking this journey through your treatment together, and by working together you can vastly improve the quality of your life. Small measures can make a big difference.

Driving may be another activity you have always taken for granted. It is obviously foolish to drive if you are not fit to do so, and you also may need to consider the implications of any physical limitations caused by your cancer on your motor insurance. This may make no difference at all, but again, it would be foolish to be caught out.

If driving is not possible for you for a while, you may need to arrange for someone else to be available to drive you to your hospital appointments. Taxis or public transport may be a possibility for you, but you are likely to find that friends or family members are more than happy to save you the money or the time and trouble by driving you. Don’t be afraid to ask! After all, you’d do the same for them.

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Frustration can also arise from your own wish to be physically strong, while knowing that this is not possible all the time. This can be hard for your family and friends too – you may feel that people are walking on eggshells around you, trying not to offend you by treating you as an invalid while at the same time making sure you have all the support you need. It is a difficult balance to strike, and there will inevitably be times when you or other people make the wrong judgement. There will be moments when you will feel like shouting, ‘Why doesn’t someone help me?’ or at the other end of the scale, ‘I really don’t need your help with this.’ Similarly, those around you will be wondering whether an offer of help will be welcomed or considered an insult. The only way to find out is to keep all the lines of communication open and to be as flexible as you can. It will take time to reach the right balance – and just to make matters more complicated, the balance may change, from day to day or week to week or gradually over time.

It will be tough for your close family to adjust too, however supportive they are. While they will be doing their utmost to help you practically and emotionally, those who are closest to you will also be going through a period of shock and fear for the future. If you have previously taken pride in your emotional strength and ability to support others, remaining calm and strong at times of crisis, you may feel that it is incumbent upon you to do so now. And yet you may feel unable to, and need to draw on the support of others. Your family will not look to you to be the ’strong’ party, but it can be difficult to shake off old habits. This can lead to a sense of emotional confusion for all concerned, and you will all need to allow time for relationships to reach a new balance.

This will have different effects for different people, some practical and some emotional. For example, there may be certain tasks which you have always carried out but which you are not capable of at the moment. Handing over responsibility for these can feel like a failure on your part, and might initially cause some upheaval as your family or friends adjust their own routines to accommodate you. It is sometimes more difficult to be the recipient than the giver of help, and you may find it hard to sit on the sidelines and take a less active role, especially if people don’t do things ‘your’ way.

After my first four-week stay in hospital, it was wonderful to be home but difficult at first to accept that I had had no part in tying up the loose ends following the sale of our business nor in dealing with any domestic matters which had cropped up. Helen had been keeping me up to date with what was happening, but had obviously had to take complete control, make decisions and deal with things on a day-to-day basis herself. I would probably have done things no differently, but needed to quibble at times just to feel that I still had an opinion which mattered! My parents too had been very supportive in helping us sort out practical issues at home, and I’m sure I was less than gracious at times in accepting their help simply because it was so hard to accept that we needed it. I desperately needed to feel part of all that was going on around me and to assert my independence in some way – it was as if after being in a relatively helpless state as a ‘patient’ for so long, I needed to regain my status as a functioning human being with a brain.

It is not easy to be a spectator while other people continue with their lives, and this can emphasize your situation painfully. Allow time and keep talking – relationships do reach a new state of equilibrium.

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In the early days, the overwhelming emotion experienced by many people is shock. It can leave you feeling numb and dazed and can make absorbing information or taking decisions difficult. Some people start to feel that dealing with anything practical is completely superfluous, and just want someone to magic away their cancer and return their life to normal. Others are galvanized into action, and want to sort out the aspects of their life which will be affected by their cancer and treatment, such as their job or other regular commitments. Shock affects everybody differently, and there is no ‘right’ way to react to your cancer diagnosis. It will take time to accept it and the changes it will bring to your life, and this process cannot be rushed.

Neil’s diagnosis had been made during the course of a single day, and he made an immediate and conscious decision not to allow this momentous event to impose on him the passivity which is often associated with being a hospital patient.

So that was it then. I was now back at home in a physical state which was exactly the same as when I left home to visit the hospital some eight hours earlier. There was the knowledge however that I had cancer and we had better start thinking about getting a few things sorted out. I think that this is probably the moment at which it is easiest for the patient either to empower themselves by becoming totally involved in the ghastly process or to abdicate responsibility by letting events run away from you. The decision is very often in the hands of the patient and his family and friends. Do not underestimate the importance of this point!

You may feel very alone and isolated after being told you have cancer. Your doctor or GP may try to reassure you with anecdotes about the effectiveness of treatment for your type of cancer or about other patients’ experiences, but these can seem completely irrelevant to your particular situation. You might feel like the only person in the world who has ever been in such terrible circumstances. Some hospitals provide support for patients immediately after their diagnosis, such as a Macmillan nurse (who will be specially trained in helping cancer patients) or specialist counselling. You might think that talking further about your cancer cannot possibly help. After all, talking makes no difference to your diagnosis. In fact, talking to a medical professional other than the doctor who made your diagnosis can help you to start voicing your questions and fears: this in itself is a hurdle to be crossed. If the hospital has no such support system, then your GP should be happy to talk to you at short notice.

For some men, beginning to talk about a cancer diagnosis is not so easy in practice. If you are not in the habit of discussing such personal and private matters, your instinct may be that your cancer is nobody’s business but yours. A temptation to feel that you must be strong and ‘pull yourself together’ is prevalent in many men, together with a sense that the need to seek outside help is a sign of weakness. These may be entirely unconscious reactions, born of habit, and it would be unreasonable to expect any man newly diagnosed with cancer to develop new ways of coping overnight. What is important is for both men and those close to them to be aware of the support available at this stage (it may not be widely publicized), and not to feel reticent about drawing on it whenever it is needed.

After your diagnosis has been made, simply leaving the hospital and getting through the rest of the day can feel impossibly difficult. What are you to do now? It can feel as if your entire world has just collapsed around you. You know that somehow you have to go home or back to work, and that the world around you is exactly as it was before your diagnosis – but for you it has changed irrevocably.

How you react at this time will be driven less by conscious decision than by instinct and the effects of shock. Returning to your normal routine might deflect the impact of your diagnosis for a short time. It is as if the action of going back to work or to the supermarket can push your diagnosis into the background for a while. You might need to spend some time alone to absorb the news and to think quietly about it before telling anybody. If your wife or partner or a close member of your family was with you when you heard your diagnosis, you might spend time alone with them, until you feel able to start passing on the news to others. Neil found he needed time for the news to sink in, but then some issues started to become clearer:

There is a moment which seems to go on for ever on the first evening of ‘C-Day’ which is me and my partner sitting on our sofa just holding hands in absolute silence with nothing that we could possibly say. I do remember that it was that evening that we made what I am certain was the most important decision of this whole ‘voyage’: to take control in whatever ways we could. The need to attempt to regain some control over these events was the secondary emotional reaction after the trauma of the diagnosis.

The need for some sense of control is not uncommon, born of a fear that if you do not actively take control of what events you can, then events will surely take control of you. It is certainly not the only common reaction though; withdrawal into oneself can be hard to avoid too, especially if you are inclined not to talk openly about your feelings. “I really don’t want to talk about it’ may be your overriding feeling, through a combination of shock and the difficulty of seeing a way forward through the treatment and uncertainty ahead.

Getting through the day is tough. Around you, all is normal – but your world has changed. You may be capable of little but sitting at home thinking through your consultation and diagnosis. You might need to use ‘normal’ activities to prevent yourself going over the same ground again and again in your mind, taking refuge in seemingly trivial tasks – walking the dog, cutting the grass, cleaning the car. This may seem odd behaviour to an onlooker, but can feel like the only way to cope with the immediate effects of shock as you try to come to terms with your diagnosis.

It is extremely important to find and use some support at this stage and especially so if you are alone. You may feel that you can cope on your own and neither need nor want to talk to anybody. Maybe you can manage, but you are likely to cope more effectively if you feel able to ask for support, and particularly someone to talk to at this early stage. Sitting at home on your own, worrying about your cancer and treatment and the future is a natural reaction, but ultimately it will not benefit you either physically or emotionally. You need to conserve all your strength to fight your disease and deal with your treatment, so now is not the moment to assert that you don’t need any help from anybody. Even if you don’t feel like talking, just the presence of a good friend or close family member can help to dissipate the sense that you are the only person in the world facing this problem.

Even if your thoughts are not very clear at this time, talking will help you more than bottling up your questions and fears. It may take some time before you can start to think clearly. You might find your thoughts go around in circles, stuck in a loop in which you can’t get your diagnosis out of your mind, and simply don’t know what to do with yourself. Perhaps you can’t stop thinking ‘Why me? What have 1 done to deserve this?’, and want nothing more than for life to go back to normal, as it was yesterday or last week or last month. Talking will help to provide a release.

It is not always easy to find the right person to talk to, and you might feel awkward at first discussing your situation with those closest to you. Some people prefer to talk to a professional counsellor or a nurse or doctor about their disease in the first instance. If you are not offered counselling, your GP or your hospital should be able to help with this – and should also be able to advise you about other forms of practical and emotional support available to you.

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Following surgery, Gary underwent an intensive course of radiotherapy for a tumour which had recurred in his brain. His treatment was given twice a day, morning and afternoon, as an outpatient on Monday to Friday over four weeks.

As I lived some distance from the hospital, I stayed with a friend for the duration of my treatment, going home only at weekends. The radiotherapy made me very tired and lethargic, and I had to make the journey to the hospital by public transport twice a day -I was not allowed to drive because of the possible effects of my tumour. Friends helped out by driving me to or from the hospital when they could, but it was hard to stay motivated and believe that the treatment would be worth all the effort. I didn’t suffer too badly from other side-effects, although eating sensibly, keeping myself occupied (other than sleeping) and generally looking after myself were hard work. The point of relating this is not to put other people off, but to emphasize that sometimes you need more support and encouragement than you appreciate at the beginning of your treatment. You just have to keep remembering (and it helps if other people repeat it) that it is just too important not to see it through. Against the odds, I have been completely clear of cancer for over a year now.

Coping with your cancer and its treatment is discussed in more detail later in the book.

When your treatment has finished, your progress will be monitored via regular check-ups. It is extremely important for you to attend these appointments, as it is your main means of contact with your doctors. The knowledge that you will be attending check-ups on a long-term basis can be very reassuring. These appointments are a good opportunity to talk about any worries or queries which have arisen and you should never feel afraid to contact your doctor between appointments if you have a specific problem.

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Bladder cancer can be non-invasive or invasive. The non-invasive form does not grow deep into the wall of the bladder. The invasive form can cover a large area of the inner surface of the bladder as well as invading deeper into the bladder wall. If this occurs, the cancer can also spread to the lymph nodes and later progress to distant sites such as the lungs, liver and bones.

The symptom you are most likely to notice is blood in your urine (haematuria). You may also be aware of a need to pass urine more often than usual and experience discomfort or pain on passing urine (dysuria). It’s important to remember that both symptoms can often be caused by a non-cancerous problem – such as a readily treatable infection – but this is no reason to delay a check-up with your doctor.

You will undergo various tests to establish whether cancer is present, and these may include urine tests and an internal examination of the bladder with a cystoscope. This is a means of looking inside the bladder with a thin tube containing a type of telescope and may be done under either general or local anaesthetic. You may also have X-rays and scans of the kidneys, abdomen and the pelvis.

The treatment for the non-invasive type of bladder cancer involves cystoscopy, with cauterization or removal by laser of any tumour and then regular follow-up cystoscopy. Drugs may also be instilled into the bladder. The more invasive type of cancer may involve more extensive surgery, possibly with the removal of the whole bladder (cystectomy). This also involves the requirement to reconstruct the bladder or to divert the flow of urine, and you will need to discuss this in detail with your doctors so that you fully understand the impact that the surgery will have on your life. Radiotherapy may be an option to consider instead of surgery, but this will depend upon your particular circumstances. Chemotherapy may be proposed. Although its role is not yet fully defined, bladder cancer (including secondary disease) can respond well to chemotherapy.

*12\118\2*

Sometimes a couple comes in for one problem, and in the process of defining the man and woman’s expectations, different concerns emerge. Harry’s announced reason for wanting sex therapy was his inability to consistently maintain an erection. This 57-year-old man suffered from high blood pressure and had to take medication for this condition. He also had been diagnosed recently as diabetic, a fact he found very difficult to accept.

Harry’s first marriage had ended in divorce. In discussions with the therapist it became clear that Harry blamed his erection problem for the breakup of this relationship. He was convinced that the same thing might happen again with his second wife, Shirley, a vivacious 54-year-old who also had been married before. For the most part, Harry and Shirley considered themselves a happy couple. But increasingly, Harry was fixated on his “sexual failures.” He was convinced that Shirley would reject him just as his first wife had—and that his erectile problems were to blame.

Harry felt an erect penis was necessary to satisfy a woman, and he was quite surprised when the therapist explained in detail that this was not true. He was even more surprised when Shirley, encouraged by the therapist, explained that she was not overly concerned with Harry’s erection problem.

When Harry lost potency, Shirley’s usual comment was, “Don’t worry about it.” Harry interpreted this remark as a well-intended solace for his failure. But Shirley meant her words, and more. Her first husband had been, she explained, a “slam-bam thank you ma’am” kind of guy, and Shirley was quite happy to be cuddled, kissed and caressed. She wanted to be physically close to Harry, but she did not feel especially deprived by Harry’s loss of potency. What she did want was physical affection. Harry’s preoccupation with intercourse as the only “real” sex was troubling her.

What Harry and Shirley learned in sex therapy helped their fundamentally sound relationship. They learned to communicate more clearly and directly. Each learned to say what was wanted without confusing the other. Relieved of the self-induced pressure to always produce an erection, Harry relaxed and found his erections improved. He also began taking better care of himself, because he could accept more easily the changes his diabetes required in his life.

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But there are other hormones discharged from the adrenergic system—epinephrine and norepinephrine, especially—that can effectively shut down sexual response. Whenever you are under stress, no matter what the source is, these hormones begin to course through your veins, directing blood flow to the heart and major muscles and, therefore, away from the genitals, in both men and women. This results in increased heart rate and blood pressure, two physical factors that can contribute to lowered libido and performance.

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The seven are vitamin E, vitamin C, Pycnogenol, ginkgo biloba, coenzyme Q (also called Co-Q-10), ginseng, and saw palmetto. You may already be taking one or two of them. If so, see my recommendations to ensure that you are taking a high enough dosage to make an impact on your health. Keep in mind that you can try any or all of these supplements. But as is always the case with new remedies, consult with your doctor before you decide which to take, and in what dosage. Five out of the seven substances listed have powerful antioxidant effects (ginseng and saw palmetto have other properties). Utilizing them to your best advantage can help to ward off—or significantly diminish —the effect of one of the body’s great enemies: free radicals.

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Consider the example of a thirty-four-year-old patient of mine whose job as a Wall Street trader gives him more than his share of high anxiety. It so happened that Eric’s third wedding anniversary coincided with the day of a stock market freefall. That night he went home, trying to put the awful day behind him, anticipating a sexual celebration. Only, it didn’t happen. There was no way that he could circumvent his worry over the events of that afternoon and the result was a disappointing evening.

When he called me the next morning, I understood why his erectile failure had occurred; so did he. Then he wanted to know if he could have a prescription for the pills for those times when he might need them. He is healthy and doesn’t smoke. His drinking is limited to an occasional glass or two of wine and he exercises regularly. His ED is solely anxiety-related. Why shouldn’t a man with his profile, in a loving relationship, have the fallback support he may need? Isn’t his quality of life being compromised otherwise?

For Eric, and the millions of men like him who will—if they haven’t already—experience anxiety-related ED, the pills can relieve worry and offer substantial piece of mind. Isn’t that a valid function of medicine?

I do feel, however, that the decision to provide the medication to males who are already performing at the highest sexual levels, and who have never experienced any kind of ED, must be made on a case-by-case basis. Presently, there is a lack of scientific data to support any preventive use of the oral drug. Although controlled medical studies are being planned to measure the benefits of prophylactic use—some experts are predicting that, in the near future, the drug will be taken two or three times a week, even when a man is not engaging in sex, to ensure erectile health—we may not have definitive answers for several years.

Based on my own experiences and on the extensive reports of my fellow medical colleagues, I’m extremely pleased with the profile of the medication. With the information on hand, I can weigh the merits of the drug on a risk-to-benefit ratio on a patient-by-patient basis.

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