I am brand new here and have never had to think about this before.
Today I recieved a shocking phone call whilst at work.
My dad had been diagnosed with leukaemia after
Having it for 5 years. Yea 5 years, after his old gp failed to tell him he had abnormalities with his blood tests. It wasn't until yesterday when he moved docs he gave new Tests and they called him into see the consultant.
My heart hurts a lot because I'm worried on what this going to Do to him and the fact this shouldn't have only been found out.
I'm so worried. I can't stop crying
C
Written by
Hurtingheart
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Oh Hurtingheart, you're well named because it's clear you're caught up in a whirlwind of fear and bewilderment that is causing you deep pain. Deep breath...we all remember this day well on here whether it was ourselves receiving the diagnosis or someone we care for.
First of all, the word 'leukaemia' strikes fear and it's clear you think the missing 5 years may have caused your father to miss out on vital treatment. Not true. CLL can be a very slow burning form of chronic leukaemia that people may have had undetected for years before diagnosis. In my case my lymphocyte levels had been very slowly rising for as many years as your father but my GP didn't tell me, he simply kept an eye on it and told me at the point it became a little more of a concern. But even then, he knew I'd be put on to 'Watch & Wait' with a haemotologist which simply means they'll continue to monitor my condition.
It's not like other cancers, treatment is not always required for a very long time. Some people, in fact I believe it's up to a half, never require treatment at all.
My GP admitted he wouldn't have pursued it even now if I hadn't pressed him on the issue. Is he right? Sometimes I think he might be. Others may disagree. But I agree patients do have the right to make the decisions for themselves.
Your father will now see a Consultant and dependent on results, he may go onto Watch & Wait which means he'll have blood tests regularly taken and his general health and blood results monitored. He may have a scan to look for swollen lymph nodes etc. internally. Is your dad well otherwise? I'm sure the GP was being more conservative than neglectful. Many GP's seem to view this as a long, chronic condition that requires no immediate response at low levels.
At the moment you won't be able to think straight and fear will be enveloping you. Your dad is ok and may continue to be for a very long time. If he requires treatments, they can be very successful at affecting a remission, again for a very long time. Please don't think he's in immediate danger, from what you've described, I feel sure he's doing ok. He'll need your support and will be worried about worrying you!
CLL can be hereditary or sporadic. I can find no previous member of my family for generations who has had CLL. So please don't be alarming yourself about those issues at the moment.
People will be along to give you support and advice. Don't scour the net for frightening statistics. We all understand your fear and panic but believe me, in a few weeks, when you've learned more and rationalised your fears, this won't seem so bad.
Take care, and please keep using us all for support.
My heart goes out to you and I am so sorry to hear of your father's diagnosis. I imagine you must still be in a state of shock and disbelief and many other feelings too. It is such a lot to take in.
I can't think of anything to add to what Newdawn has said to you but I just have one question, which perhaps you could clarify; please forgive me if I have missed something but you don't say which kind of Leukaemia your father has. Is it CLL (Chronic Lymphocytic Leukaemia) or another type, as there are different Leukaemias?
Please don't hesitate to ask anything here - you are among people who have some understanding of what you are going through.
Hi Hurtingheart, I have no doubt that everyone here, whether sufferer or related to a sufferer will identify with your feelings of shock on receiving the news. It usually comes out of the blue, often after a routine blood test, with the affected person having had no inkling of a problem. I know, from the results of prior occupational health checks, that I had had CLL for at least 3 years before being diagnosed.
I really can't add to what Newdawn has said, except to repeat try not to panic. CLL is usually a slowly progressing disease, often requiring no treatment. And unlike many other cancers, early treatment is not useful and doesn't help. Don't hesitate to post again as you find out more about your dad's situation.
Sorry to here about your Dad's diagnosis, mine diagnosis was 15 years ago, and I'm still kicking...
CLL can be hereditary in about 12% of cases, but it isn't a straight father to son or daughter situation, the pedegree is far more complex... There are also believed to be environmental factors at play, so familial or F-CLL may infer an increased risk to a child, but that child may never develop CLL.
CLL/SLL is extremely wierd in many areas, for example it is both a leukemia and a lymphoma.
Hope you find out what type of leukemia your father has...there are a number of different types.
Interesring to hear from somebody like me. Diagnosed 13 years ago and my last blood count was exactly the same as the first, with up and down readings thro' the years. I trust I will die in great old ago ( I'm 71 ) of nothing other that the body wearing out.
Hi, i read your blog entry a couple of times and cannot see what type he has been diagnosed with. That will help in understanding your dads situation as i believe there are over seventy different types of Lymphoma/Leukaemia. If it is CLL you will find any people even in the small subset of CLL patients here who have been diagnosed for a long time.
I still class myself as a newby, having been diagnosed in June 2012, and have found it is good to use a few sources you trust (this being one for me) as there is a lot out on the internet that can scare or be misinterpreted.
The community here is strong and can share many experiences with you, however it is important that your dad gets the proper medical guidance going forwards as well so as to set himself up for a long future and to ease your shared worries.
I was worried about the heredity side as i have a son and daughter in their mid-twenties. The answer i got to was that there is a small risk increase however it is small and nothing to worry about.
Listen to Newdawn above, cos she knows what she's talking about. My husband was diagnosed 3 years ago, but the consultant said they had known about it since 2006! We've all of us on here felt the pain, worry and despair that you are going thro right now. But look at a lot of us, chin up and carrying on, most of us untreated as yet. You be strong for your family, cos you have years ahead of you. Sylvia
Hi, I can only echo the advice in the previous comments. I truly remember the shock of being told I had CLL. However, that was 8 years ago, and so far so good, no treatment required and I have annual blood tests to monitor things. I feel pretty good and the only things that are problematic, are the sweats, and the fatigue. I had been complaining to my GP for a few years about the tiredness, so it is possible that I had it for a while before diagnosis. Who knows. My diagnosis followed a fairly routine blood test, when it was suspected that I had Diabetes. So try not to worry, I know that is easy to say. There is also a very good group on Facebook, which is growing by the day. There are some really knowledgeable folk there too.So between these two sites. You will usually always find good information. They are also very good platforms to have a good old rant when you need too. We are all here for each other. Never worry about posting question or concerns you may have. Take care of yourself, Dad, and the rest of your family and friends who all must be reeling from the news.
Hi feel for you as the same thing happened to me. My gp was so stressful with her own emotional problems she omitted to tell me I had CLL and I was treated with HRT for the tiredness.I changed gp and was told after numerous infections. That was 11 years ago. I am now 59 on watch and weight with no treatment. So be hopeful and spend time with him enjoying his company AND talk to him telling of your fears and emotions I was so glad it was me and not my daughter M
My situation was the opposite of your fathers. I told my doctors that something was wrong for 5 years, but they ignored me and labs that showed the was an issue. When I was finally diagnosed, I was quite ill, with the CLL affecting my kidneys to the point that it was thought that I would need a transplant. that was ten years ago.mmy current doctor thinks that I probably had CLL for a long time before I noticed symptoms, but fairly minor treatments put me into watch and wait, and I'm healthier now than I have probably ever been. Like Chris, I'm still here despite the fact that when I googled CLL everything I read said I'd be dead in five years. DON'T make yourself crazy googling!!!!!!!!
I would suggest that you ask your father to get copies of his lab work and that he take a recording device to his appointments. He is probably dealing with shock. Being able to go home and review what you have been told is very valuable. You can also have others just listen to the recordings rather than trying to interpret what the doctor said.
You mention your father's blood count. His lab results should show several different counts. If the count you gave is his hemoglobin (think you use a different spelling across the pond) it would explain his doctor wanting to do something right away to get the number up. Once you have seen his lab reports people here can help you to understand what the different numbers mean and as you process everything they can also connect you with other resources that provide reliable information.
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Newly diagnosed husband
Son diagnosed with Chronic Lymphocytic Leukemia
Cll diagnosis for my dad
Worried that Ibrutinib is working?
Hoping to turn a corner on this long road...sorry in advance for a long intro...it's been a long road
