Hi all, I hope you all had a wonderful Christmas ( and to those who might not celebrate, my hope is simply that you had a wonderful day!). I'm coming up on my 2nd 6month blood check and I have a question that has been rattling around my mind and not knowing if I will actually be seeing a medical oncologist ( you might recall that the only one on our side of the island suffered a stroke in July), I thought I'd ask it here....is CLL hereditary? No one in my family had it but my concern now is for my children and grandchildren. Are they now at risk of having this disease? And the second part of my question is this, at what point does/ did CLL show up in the more extensive tests that are done?. FISH and Flow ?. I realize these are expensive tests but would they show that our son or daughter may develop CLL in the future? At what point do those deletions show up and the mutations or lack thereof?
And lastly, many thanks to Pat(Ms lock your posts) for putting me in touch with Lynn! We are meeting up on Jan 6th and I am really looking forward to meeting someone who is living with CLL and learning how she does it!
Written by
Hilomom
To view profiles and participate in discussions please or .
I’m so glad that you and Lynn will be connecting! She and I have known each other forever through CLL groups. She is a special friend and very knowledgeable about CLL.
There are studies that seem to indicate that CLL can be hereditary. I’m not sure whether any of them have shown what percent of families are likely to be affected. My family has a collection of blood cancers - multiple myeloma for my grandfather and my uncle (his son), Follicular for that uncle’s two sons, and AML for one of their sons. But, there are 4 in my uncle’s generation, 16 of us in my generation, and I’ve lost count of all of the children and grand children. A history like that is unusual.
A cousin and I put together the family health history, and have added to it over time. We have shared the information with everyone as they become old enough to use it. Most important is that their doctors are aware of it. When they go in for their regular wellness checks their doctors can then be on top of labs with lymphocytes that are going up, problem nodes or an enlarged spleen, etc. I think awareness is important, but beyond that your kids should just go out and live. Should either of them, by chance, develop CLL there will probably be a cure by then. We are so close to that now.
The new hematologist did her fellowship at the Hutchison Cancer Center in Seattle with some CLL specialists, so there is hope for some insight from her.
New in Hawaii? “The Hutch” is very well known in CLL circles. She should be up to date on the latest treatments and trials, and will have the Seattle group to use as a sounding board if / when she would like input on a case
There are many people here on HU who have one or more relatives with blood cancers or CLL, myself included. My father had Non-Hodgkin's Lymphoma and my older sister also has CLL. A few years ago my older brother had genetic testing done as he has had three separate cancer diagnoses (none were CLL) and his son also had cancer, but no genetic reason was ever found.
A connection between relatives with CLL has been shown to be prevalent enough that sometimes its referred to as F-CLL, or Familial CLL.
That said however, it is absolutely not a given at all that because one person has a CLL diagnosis that any of his or her relatives will also one day. As MLYP has said, the most important thing is for medical professionals to simply be aware of it as part of a person's family medical history.
This is actually the reason I happened to be diagnosed quite early on, the awareness of myself and my doctor's about my immediate family medical history led to very regular blood testing once I reached about age 50 or so. However its also worth noting that mine is not a typical case, in that both of my parents and each of my siblings have had at least one cancer diagnosis.
Wishing you all the best and both you and your family a wonderful 2020. 🙂
My own hypothesis is that a weaker immune system, that allows any of the cancers to get a foothold, is the more likely factor in hereditary cancers, including all the blood cancers.
My Dad had CLL, his twin had blood disorder and their mom ( my grandmother) had leukemia/thrombocytopenia. For me it's hereditary. But my only sister does not have it. My aunt's children do not have it as well. Very random but possible. 💕
Thank you all, I appreciate this. The only cancer in my family was my paternal grandmother, who had stomach cancer. My gastroenterologist is aware, so that area is covered! I was diagnosed with thyroid cancer in 2003, was treated with the I131 radiated iodine pill and have had negative full body scans ever since. In 2018, 6 months before my CLL diagnosis, my thyroid bloodwork showed elevated thyroglobulin levels. Had a scan, but all was negative and I was sent home by my family Dr with a shrug of his shoulders. Now, he doubles back and admits that the elevated levels could have something to do with the CLL.
On a different note-you can tell by my username how old i am-my mother was given DES=diethylstilbestrol- in the 50's to prevent her miscarriages-she had 3 miscarriages before i was born then my 2 sisters while also on DES.
then it was found out this caused future cancers in children of DES mothers.
My sisters have both had breast cancer and i b-pll.
you never know
My Grandmother had CLL, I am the only grandchild who has it. When I was first diagnosed 8 years ago, I was told it wasn’t genetic, that has since changed. There are so many new treatments, we are all very blessed.
Dear Hilomom,
Thanks for your interesting post. I had have similar ideas.
If I remember correctly (!) about 10-15% of CLL cases are linked by family.
What seems more general in my family is an inherited immune system deficiency. My mother died of CLL, my sister has an immune system form of blindness and lesser illnesses, one of her two daughters has MS, I have CLL and polyneuropathy. The other generations of children are too young for anything to have shown.
Not enough to claim a correlation, but food for thought. Some time in the future I might talk to my sons about this.
Research seems to indicate that it is probably not hereditary. The only linkage found to date is possibly the herpes virus. The first indication of CLL (and others) "is a raised white blood cell count. Flow cytometry is only usually done when the level reaches 10 (normal under 4).
Good question. CLLcanada (Chris) had Familial CLL and if I recall correctly about 12%? will have Familial CLL. Having said that, a lot of people have (MBL) Monoclonal B lymphocytosis. I have seen figures as high as 50% of population over 60 years old. One person out of every three people in USA will develop some type of cancer over their life time so I would not be to concerned other than doing the normal health checks per each one's family history. Blessings.
only 1 % of the population get it. I had/have it, no one in my family had it. Personally I think I got it from using insecticides when at work and also at home.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Newly diagnosed with CLL
New SLL/CLL diagnosis
CLL Transformation - Richter's? 
CLL with “normal” FISH
what provoked my CLL?
