I had a telephone consultation 1 week ago with my CLL doctor regarding my recent blood tests. I have only previously seen her twice face to face. I was diagnosed 8th Jan this year stage A watch and wait. She said there had been no real change and she would send the results to me plus forms for next blood test in July. I asked her whether I should be taking statins. My local doctor had previously said I should read up on statins first because my cholesterol was only 3.6 although he did say I had a 12 percent chance of having a stroke or heart attack in the next 10 years. (family history of heart attacks). Her response was 'yes, I want you as fit as possible to be able to fight off infections but it's not up to you to choose whether you go on statins, it's your local doctor's decision. At present I've decided not to take them.
I then asked her should I be seeing a dermatologist, having a chest x ray and having a colonoscopy? Had colonoscopy 2 years ago, result negative. She said 'why would you want to see a dermatologist? I said because I had read on this forum that CLL gives you an increased chance of getting skin, lung and bowel cancer amongst others. Her reply? ' No you don't need any of these tests and the only test we could arrange would be a CT scan if there were suspicious symptoms. I got the impression that I would have to see my local doctor if I had any symptoms who would then refer me to hospital. All she seemed interested in was CLL. Now it's very difficult to see my local doctor at the moment. I felt like this CLL doctor doesn't regard me as a serious case and she seemed keen to get off the phone quite quickly. Perhaps she had her lunch break coming up. I would much have preferred a face to face consultation. I hope the next one in July will be. Please don't tell me to find another specialist because I want to give this one a chance to prove herself. I know these are very difficult times for everybody but I have to ask myself, is this the way it's going to always be? I don't feel as if I'm getting good care, perhaps at my stage I don't need it but I can't forget the feeling that a cancer could be somewhere in my body and nothing is being done about it. I don't want to insist on having these tests (especially colonoscopy) and fall out with her but at the same time I have to take responsibility for my health. This lack of concern is stressing me and I feel I'm on a downhill road to nowhere.
Any advice would be welcome.
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Dracaena
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Personally, I think every CLL patient should have an annual full-body check from a dermatologist because of elevated risk of skin cancer. And I think every CLL specialist should know this and support a patient's effort to make that happen. However, it may fall to a GP to make the actual referral. Good luck!
I had a very laid back specialist (private) during watch and wait who barely bothered to look up my blood test results. He did then refer me to an excellent NHS consultant when symptoms worsened. I have never had skin or other ancillary tests done apart from CT scans, and an ECG and heart monitor when joining the FLAIR trial and starting on I and V. Looking back I don't think the rather disinterested consultant did me any harm. They know what to look out for but perhaps don't appreciate or sympathise enough with the difficulty for the patient of being diagnosed with blood cancer but not doing anything about it. I think I the best course of action during W&W is to try not to focus on the illness, be as active as possible and generally lead a healthy lifestyle. This should put you in the best place if and when treatment is required.
Hi Dracaena, I was diagnosed Feb 2019 and spent most of the year, like you, worried about the other cancers. We have colorectal cancer in the family so I was already having colonoscopies but was worried about ovarian cancer, even though there is no family history, because you by the time you know you have it is usually too late.
I discovered that offering to pay privately had my GP referring on the NHS (I recommend this as a means to getting tested) and I've been reassured that my menopausal ovaries are so shrivelled that they couldn't even visualise one on the ultra sound 😝
Right now you won’t get a referral for dermatology so why don't you take pictures of your skin, get a friend to take pictures from behind, and keep these for your own regular check up.
I would die for your 3.6 cholesterol level (ha ha). Don't be so keen to take them, I suggest you look up side effects of statins, they are a sticking plaster not a panacea and there are many other causes of heart disease that you can affect by lifestyle changes. Having a genetic predisposition is good to know because you can then choose a good diet and exercise regime. I know thats a bit Pollyanna but better than not knowing and regretting poor lifestyle choices later.
I find the “oh you have the ‘good’ cancer, don't worry about it” attitude undermining of your perfectly reasonable fears and worries at being told you have cancer. Ive had that from medical professionals and well meaning friends.
You've been told to ‘watch and worry’ and then left to your own devices. I know how that feels. I decided to do things to maximise my health, some of which get shot down in this group as having no evidence behind them but made me feel more in control. Feeling that you can do something to help yourself is important. I now know that my lymphocyte levels has been creeping up since 2013 and last year stayed level. I know this could have happened anyway but I believe that my efforts helped.
So I upped my exercise, I lost weight, thereby reducing my inflammatory load, using intermittent fasting (has gone out the window during lockdown, I am now baking queen 😋), I take a lot of supplements and herbs, some of which are cheap and simple like turmeric and ginger, and some are expensive like the Chinese herbs I take. I do breathing exercises for relaxation but recently also to improve my lung capacity.
Your CLL doctor will only be interested in your CLL, thats a side effect of specialisation, so when you get the chance gently badger your GP for the tests you want that will set your mind at rest. Peace of mind is part of your health journey too.
I can speak from experience of some of the conditions you're concerned about, but not circulatory issues.
Specialists confirm that leukaemia is associated with a higher incidence of skin cancer. In 14 years with CLL I've been treated for several, though none in the first 4 years of diagnosis.
Unless you have reason to think you're a prime candidate, skin cancer should not be a major concern at this stage. In terms of risk, the combination of fair complexion, aging and history of UV exposure are much more significant. From middle age everyone should regularly self-examine and any odd changes on the skin should be referred to a dermatologist. The first skin cancer can be one of many, so it's a good idea to follow advice about screening, maintain self-exams and if possible arrange periodic examination as Kim suggests.
In colon cancer CLL is a risk factor but again a small one compared with aging, poor diet, family history etc. Where resources are tight, colorectal surgeons may refuse CLL patients routine colonoscopy unless they have particular symptoms, or a strong genetic predisposition, or polyps revealed by previous investigation. So far I had two colonoscopies and am on a 5-year repeat schedule, which I find just about acceptable (tumours in the colon tend to grow slowly).
There is an urgent need to upgrade screening programmes for colon cancer. The current FOB test misses far too many, or identifies them at too late a stage. A blood test for polyps is available, though little used, in Germany. Analysis of DNA in blood seems to be the way forward
1) If you had a colonoscopy 2 years ago you are good for at least another 3 years. Typically, the interval is 10-years for folks that aren’t high risk (no polyops found during previous procedures and/or family history). High risk folks have colonoscopies done ever 5 years. So don’t worry about this issue for a while;
2) The inability to get a skin scan for CLL patients seems to be a general problem with the NHS. I’m not sure why this is but you are not alone. Therefore, I suggest you start giving yourself thorough skin screens on a weekly basis perhaps with the help of a family member? Look on line and there are many pictures of the various types of skin cancers. Use your phone camera to catalog any changes. I’ve had several basal cells ( I have one on my nose right now that is waiting to be taken off once the lockdown ends) and in all cases I found these first and brought them to the attention of my dermatologist. If you find anything suspicious make an appointment with your GP to discuss.
3) your comment about heart disease and satins concerns me. From what you have written this seems to be the health concern I’d focus my immediate attention on. Making a personal decision to stop any medication that has been prescribed by a doctor is I’ll advised in my opinion. If it were me I’d try and get into to see a cardiologist to discuss the satin issue and my family history of heart disease as the statistics you site are alarming.
4) Your doctors lack of concern about your CLL is likely related to your recent diagnosis and the early stage of your disease. Basically, there isn’t much to be done now other than periodic blood tests and you indicate you are having these tests on a quarterly basis. If you don’t feel you have a good connection with this doctor maybe you should try and change CLL doctors.
Regarding the statins, I was questioning whether it was wise to start taking them as my local doctor said read up on it first. I have never been prescribed them so suddenly stopping taking them is not the issue.
Of course, you are the best advocate for your own health. My experience so far (6 years since cll diagnosis) has been that non-CLL concerns have been dealt with by my GP, who I have kept updated on my CLL. That includes colonoscopy referrals, which occur every five years. My hematologist hears my concerns, and if they don’t fall within the area of his expertise he generally directs me to my GP, who makes referrals as needed. She was the one who referred me to my hematologist in the first place. I am the bridge between them and find it’s essential to keep each of them informed. I find that my GP knows my general health and concerns best because of a history going back years, and my hematologist will make recommendations based on his knowledge of Cll. Right now is a tough time to establish a relationship with your cll doctor. Telephone examinations just aren’t very satisfying for the doctor or patient. I’d give your specialist a chance, but if, over time you find they are not properly listening, find another who will listen. You are on watch and wait, which can last a while, so most likely you have time to establish a relationship with your hematologist.
I have been on W&W for 8 years and have been having a yearly skin check with the dermatologist on the advice of my CLL specialist. They have never seen anything suspicious. The last time I went I saw a doctor instead of the PA I had been seeing (and who I was very fond of.) The doctor took one look at my chart and said “CLL? I want to see you every 6 months instead of yearly. You are 8 to 10 times more likely to have skin cancer.” Though I was not happy to add yet another preventative visit to my list - I feel like I spend my life with doctors “watching” me - I was happy to know my dermatologist is knowledgeable about CLL.
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