Hi everyone!
I'm a healthy 38 year old Mom to a three year old and I've been told I could possibly have CLL/SLL. I had a fine needle aspiration a few weeks ago and had to have an open biopsy on an enlarged lymph node just yesterday. I am so scared! My doctor says I'm really young to be diagnosed with this. I'm hoping to hear some stories from CLL/SLL patients that have been diagnosed at a younger age.
Hi Kelly, I am writing back not because I am your age, but because I wanted to offer your some reassurance. Although I was diagnosed at age 54 (two years ago) which is considered "young" for CLL (median age of diagnosis I believe is 72), there are other members on this site in their 30s and 40s who I am sure will respond to you when they see your post. The biopsy should give you a definitive diagnosis. If it turns out to be CLL/SLL you have come to the right place. You will find this community to have some of the most supportive and informed people you could ever hope to encounter. Some of our members have been on watch and wait with no treatment for over 10 years. Others are finding great success with many of the new treatments that are now available and countless clinical trials offering hope for long-term remissions. Please keep us posted on your results and know that you are among friends who will be there any time of the night or day to offer support.
Warm regards,
Nan
Hi Kelly:
I know I speak for everyone in here when I say I'm sorry to hear of your possible diagnosis.
CLL (on average) afflicts 70 year old Caucasian males of Eastern European dissent or possibly Vietnam vets who were exposed to Agent Orange. That's the typical profile you may read about. Generally speaking, young females, such as yourself, do not fit the mold.
I lost a cousin nearly two years ago. He was diagnosed with CLL in his mid forties and lived with it for 25 years and probably would have lived longer if he had taken better care of himself and not developed a secondary cancer.
The bad news is CLL (currently) is incurable. The good news it is a slowly progressing cancer. Some doctors will tell you "it's the good cancer". Hogwash! There is no good cancer. Unlike other cancers, CLL is manageable and you may live a very long life and die of something other than CLL. I hope for all of us it will be old age. The other good news is that they are making great strides with CLL and at your young age you may be the beneficiary of good things to come in the future.
I'm glad you have found this site. I'm new here but I have found this community to be inhabited by well informed and caring people sharing a common journey.
I understand you may be scared and I'm sorry if you are. I think at your age we'd all understand if you were also angry. As a young mother, you have a lot to live for.
Until you are actually diagnosed, try not to overthink it.
I wish you well and hope this is something other than CLL, but just know if you need to talk or have questions, there is always someone here to listen and try to guide you in the right direction.
Be well and Godspeed.
RK66
Hi KellyM,
I was diagnosed a year ago at age 37, I too am now 38, I have 2 boys aged 6 and 3 so I can relate to how you feel. I am fine physically, however it's been a lot to take in mentally. Please do let us know if you are officially diagnosed and we can talk further. For now, just know whilst we may be unusual to be here at our age, you are most definitely not alone! This site is wonderful. Stay in touch and I will write properly soon.
Firefly x
Thanks for the replies! I will definitely post when I get a definitive diagnosis. I'm hoping it's all a big mistake but if it isn't, I feel better knowing I have people to chat with on this site.
Hii Kelly,
I was 30 diagnosed at 30 
CLL. I have girl 15 years old! Yes, let us know if you have this diagnose...and don't worry, we still here still young
Stay positive...My Cll friend ( 38 years old, 9 years on treatments) gave birth ( sun 5 y) between treatment!
P.S Wish you Merry Xmas everyone!
Best regards
Elena
I was diagnosed with CLL at 42, almost a year ago. You are not alone.
Hi Kelly,
A warm welcome to the community, one none of us wish we had need of, but a warm welcome nonetheless. Unfortunately for me I'm not quite in my 30s, being 59, I've been around here since I found the community a couple of months after diagnosis and during my treatment. I am one of the few that had treatment soon after diagnosis.
The best initail advice I can offer is try not to panic or rush. That I appreciate us hard to do however CLL is in general a slow progression. Secondly, be careful of accepting everything on the internet, there are a lot of opinions out there, some somewhat dubious, if in doubt ask here, as a community we have a lot of information to share, the vast majority of it first hand.
rob
ps: here's hoping it is a false alarm.
Hi, I am 38 with 4 children and I was diagnosed with CLL in October after speaking to my doctor about a sore and tender swollen lymph node in my neck.
It is very scary and definitely a lot to take in. Don't panic and be positive (very hard at this point in time i know!) I have found so much information on this great site and the members are so very welcoming and informative. I wish you the very best.
Hi kelly I was treated for anaemia for near 30 years , I just had a high white blood count wich was'nt taken for anything signifcant till a blood test was taken by chance at a more interested clinic , this picked up my diagnosis as cll. I'm now 69 and have been on wait and watch for 4 years. I believe that i'm mor likely to die from old age than the cll.wich i;ve realy had for near 40 years.
I realy hope your diagnosis turns out not to be cll but if it is you could have a long time on w&w
Best of luck
ps i'm a vietnam veteran
I probably had CLL for years before I was diagnosed in January at age 42. I am wondering if CLL is more common than the doctors think. I find it hard to believe that less than 20,000 in the US will be diagnosed with CLL each year.
Yes i think it is under-diagnosed
I think the actual number of cll patients is far higher . Many when they are telling their stories when they were diagnosed with cll they will mention that they had blood counts sky high years before diagnosis and no body paid attention to that high blood count or falsely attributed to a viral infection
So this all will be reflected on the statistics of survival rates of cll patient
I think it is much better than the statistics tell
Kelly
Please don't worry but let us know when you have a definitive dx.
One thing whilst you are young to have cll what you have to remember is many of us who are diagnosed in our 50's may have had cll for many years but didn't know it!
So it's not unusual to have cll in our 30's only unusual to be diagnosed at the age.
The other good thing is that the earlier the diagnosis the better the chance you will fall into the 33% of patients who never need treatment.
Even if , in time, treatment is needed the developments in cll treatment is such that at the recent ASH meeting medics are starting to whisper the "C" word CURE!
Hope your results have a negative report but even if it means you join those of us in the cll club there is a positive outlook for this slow moving condition.
Our thoughts are with you at this time.
Geoff
Hi Kelly I am sorry to hear you may have CLL. I was diagnosed at 41 and I have 2 children. It was quite a shock to the system. If it's any comfort to you I have found I can live a pretty normal life so far. I can be quite tired some days but apart from that all has been good over the last year. It is very hard to get your head around thiS. It's also hard for your family but arm yourself with the facts and the positives and it won't run your life. I don't let it define my life, I like to approach it like a chronic lifetime disease like diabetes or asthma. My consultant says because of youth on my side I will be able to undergo more rounds of treatment and other drugs may become available with technical advances. Try to stay positive - some people have this for 25 years before they start treatment. Thinking of you. Take care and make sure you make some time for yourself. X
Dear Kelly,
I hope you never have cause to use this site, again! Good luck!
If you do get a positive dx, there's one thing I learnt from my own dx is to be very careful who you tell.
It is only natural to want to tell everyone but I found people react in quite surprising ways. They then see you as the 'ill' person and when they hear the 'L' - Leukaemia word they expect you to drop down dead on the spot. Most people associate Leukaemia with the children/young adult Acute Myloid Leukaemia that is much more rapid than CLL the chronic type. In retrospect I wish I had only told my very nearest and dearest and sworn them to secrecy.
Once I got over the shock of being told I have an 'incurable cancer' at 52 it is probably the best thing that's happened to me. It's made me really appreciate being alive and I relish every minute.
I agree.
Kelly,
Since I was just diagnosed last month, I believe what you are going through is the normal reaction/shock/panic/depression. (My confession and a little self-indulgence added in) I'm not 38, but am 61, Asian & otherwise very healthy.
Do as much research as you can, so you understand your risk level. (It helps make sense of all the test result lingo.)
Write down questions for your oncologist. You will forget. Have someone with you who can act as an advocate & remember what he/she says.
The main difference with THIS cancer is that we have time on our side & very active support groups like this forum.
This forum is a blessing.
---
What I'm doing now...I'm back to my regular life. No longer emotional when sharing the news with friends & family. If they offer to help, I suggest things where I am the weakest, like a walking partner.
Since I don't know if/when the stages will change for me, I am starting to actively work on being as strong physically as possible, improved whatever life style habits & strengthen relationships.
I intend to live as well as I can.
Hope this helps.
Hi Kelly,
I was recently diagnosed with CLL at age 47 and I have 4 kids. Twin girls 7 years old and two boys 12 & 14. You have everyone's support here.
Best wishes,
BC
As you can see, lots of support and great advice here. A life saver to be sure. We hope not to hear from you again, but if we do you will be most welcome. Good luck. Peggy.
I was diagnosed with SLL (stage 4) when I was 39 and needed treatment within 6 months but that put me into remission for over 11 years. I had a second round of treatment in 2007-8 and I'm now approaching the age of 61 and I'm feeling great so try not to worry and enjoy life.
Jacques
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