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CLL Support Association
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Just diagnosed at 30

I am a thirty year old mother of two very young children. I was diagnosed today with sll and have no other idea of the staging/prognosis. I had a lymph node excision biopsy and fish test and will now have more tests (pet, blood work, bone marrow, Ct scan). I have no b symptoms. My mother was just diagnosed with cll at 65. Should I be able to know more about my prognosis from that fish test? Does everything sound like I am doing it right? I am just so freaked out and overwhelmed and scared to miss seeing my kids grow up. I will appreciate any insight!

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Hi Lrd38,

I will let those who have more knowledge answer questions with regard to testing but I just wanted to reach out and tell you to take a deep breath and not panic. All of us can relate to how you are feeling. I was diagnosed in 2014 but just recently began posting and reading posts on this forum. I can tell you that this is an incredibly caring and sharing community and you'll receive a lot of support here. What I've learned over the last couple of weeks is that it's very important to get certain tests done and to make sure that you have a recognized specialist. Based on what you wrote, it seems like you are getting the correct tests done. I would also suggest that you get the IGVH, NOTCH1 and TP53 tests done which is something that I am looking into myself. Again I know that those are important for CLL - I am not certain about SLL, but I'm sure somebody will respond to your post with good answers. Sending you positive thoughts and strength from Canada.

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So many friends on this site as appreciated by the responses so far.

Dr. Byrd's center is one of the top programs. If you see another MD specialist in that group it is practically like seeing Dr. Byrd. So it depends on how much of a hurry you are in to be seen and have questions answered in person by hm or one of his colleagues.

Bottom line - CLL/SLL is the "low hanging fruit" of cancer. In all likelihood you will not need to be treated with chemotherapy, but can receive immunotherapy with minimal side-effects. This means the disease is treated like a chronic disease, and you will need to continue taking medication, but the good news is that the drug(s) will render the disease quiescent. There are many drugs emerging on top of those that are already out there. I got myself into a clinical trial pretty early and am feeling 100% well, and I had crushing fatigue before. There are several trials going on at Ohio State and they can advise perfectly well.

Hang in there, be present, and know that you are in a wonderful community and have access to incredible advances in monitoring and treatment. This disease may well not shorten your life at all.

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I have been reading this over and over again as I start to feel panicky. I am just so scared and you have made me feel so much better. Thanks for taking the time to offer me support.

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Dear Lrd-What shock it is for anyone at any age to get this kind of scary diagnosis especially on top of your Moms situation. The folks in this forum can be an incredile resource so keep asking questions and reaching out with your concerns, this is a place for solid information and understanding. At this early stage You will hear many folks urging you to be sure to have a Cll/Sll specialist on your team. And if you need help finding a specialist this is the place that can point you in the right direction.

Sending light love and strength to you and your family. -bill

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Thank you for the reply! My Hematoligst oncologist said that after I get the whole work up done here, I should go and consult with dr. Byrd at Ohio state which is two hours away. She said he is a well respected cll specialist. Does this count as having a specialist on my team? Should I be shopping around more for doctors? At what stage do I do that? I already called another oncologist at someone's suggestion and I couldn't get in for over a month- is that standard?

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Dr. Bryd is highly respected. There are a number of folks on this forum who can give you thier first hand experince with him. I think you are fortunate to work with him. I'm sure others on the forum can give you more info than I. Sounds like your in good hands. best wishes-bill

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I am planning to see Dr Byrd myself, he is said to be brilliant and caring. U do not need more CLL specialists at this time. I am a newly diagnosed and reading 2-3 hours per day. It seems to me that your doctor wants to check how many locations of lymph nodes are involved and may be u can be cured with low dose radiation. Keep your chin up. Sometimes ANY doctor in community setting can take a month or longer for a new patient. This is not An EMERGENCY ROOM disease, but not a ball dance room either, panic and extreme worries will not get u better, especially when u care for such a precious toddler.. I got 99% from this forum and under 0.5% from my hematologist, who is very basic and" shallow" as I call him. So, do all the suggested tests, but do not go any further before u see Dr.Byrd. Be prepared that based on your tests it can take up to 6 months to get an appointment. Best of all, Galina

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Your hematologist is obviously on the ball if she has already told you to see Dr. Byrd or one of his associates. Clearly her main interest is you, not her ego, and you can expect that she will work as closely as is necessary with your OSU doctor. Unless something extraordinary shows up in your tests there is probably no reason to rush your next appointment. See what the test results are and what your doctor advises about when to see your specialist. I don't think you need a third oncologist involved. If you had a complicated case, treatment was pressing, and your first two doctors (one being a top specialist) disagreed, then a third opinion might be in order. Take a deep breath. You are probably in for a very long journey. 14 years for me so far and no end in sight!

Do take a recording device to your appointments. You will essentially be listening to a foreign language while stressed for a while. Being able to listen to what was said again later was very helpful.

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Hi Lrd38,

I know exactly how scary an SLL diagnosis is because I was diagnosed 3 years ago. I was told it was indolent and that it would probably be some time before treatment would be required. So, I am on watch and wait (worry and wonder) but I want to tell you that it takes lots of time to process this diagnosis so being freaked out is a perfectly natural response. It will get easier and this forum is an excellent source of information. I am stage 3 and have not had any special tests done, besides two biopsies, which confirmed the diagnosis. My specialist said more tests would be done when I get closer to treatment. I live in western Canada and have always led a very active, healthy lifestyle and I continue to do so. Please know that you have friends here who understand what you are going through. As scary as it is, you will see your kids grow up. Thinking of you.....

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I have a 2 year old (almost 3) and was diagnosed last year. It's difficult to have this diagnosis, but at the same time, there are so many new drugs out there that fight this sort of thing... just stay as free as you possibly can from chemo.

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Hi and welcome. It is normal to be scared but things will improve the more you know about your cancer. I encourage you to read the texts and learn from the videos you can access through this site. There are many knowledgable folks on this site who will answer technical questions and the rest of us who just like to be on the comfort crew. Live in the moment and don't worry til you have to and only if you have to. Save your energy for enjoying your children. Worrying about this won't help. taking steps to get good medical advice and care, avoiding infections and staying positive are the best things you can do right now.

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I just want to give you a big hug! You are not alone here. Lots of lovely people to answer all the questions in your head. Take a breath. It can feel like things are going a hundred miles an hour at first and you can’t stop thinking about SLL/CLL but this will calm with time and things will settle into a new kind of regime. Once all the tests are over you will see if treatment is required now or you could be on watch and wait. Lots of love. Cindy.

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Oh you are not alone. We have all been there with the early diagnosis process. So 1st of all and I know this is hard to do don't worry about the process. That will do you more harm than the SLL at this point. If you are now not having any physical issues then that is great. Get you 2nd opinion! You will look into the mirror every morning and say I have cancer. No one that doesn't have this understands that. You will learn to read you body well. Yes with every little issue you will wonder is it related to Lymphoma. If the OC determine that you will watch and wait then again don't panic it is normal process unless you feel you have physical issues going on. You are young so that is go and bad in a way. All the statistics are based on an age group above 60 years old. So most of what you read is based on that age group results. I don't know your situation, but I will tell you what my OC told me. You most likely will not die of this disease. There are several paths to treat the physical issue without going to Chemo. Stay in good health and take care of yourself. That will be better than any treatments out there. Best of luck and you can always come here to talk about what is going on.

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Hi there.... You came to the right place! My brother was diagnosed at 32 just a few months ago and the people here really helped us understand and figure the right steps to take. It is super overwhelming in the begining with all the info being thrown at you... but it will be ok. I think the best advice we got on here was (considering your young age/my brothers) was to find a specialist in CLL specifically. Thats what I did for my brother and I think it has made a world of difference. BTW you mention about your mother being diagnosed my father and aunt were also diagnosed. I dont know where you live but if you are at all close to Boston Mass Dana Farber is running a familial CLL study ... They are very interested in young people like you and like my brother. They saw him for free and will cover all his meds if he ends up being in the trial. Dr. Brown and her team are incredibly knowledgeable and through. If you are at all close by I would def reccomend making a consult. Also, they will work with your local doc if you arent able to travel back and fourth to Boston. I'm sorry about your diagnoses, like everyone here will tell you, you are likely going to live a long and full life. They have new targeted meds coming out everyday and despite no one wanting this diagnoses it is typically a very slow growing and indolent disease. We are all here to help. Please feel free to message me if you are interested in Dr.Browns info.

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Hi Lrd38. My daughter was diagnosed at age 29 in 2015. It was a shock for all of us. Yes the beginning testing and coming to grasp with the diagnosis is difficult, but once all the facts are in and you start the routine of watch and wait you will adjust. My daughter is currently pregnant too and due this January. She was advised to do it now while still in the early stages without any need for treatment. She did not how a bone marrow test as part of the initial testing, but I am sure if the disease progresses she will. Definitely make sure you are under the care of a CLL specialist. Where are you located? My daughter lives her life and I find she only gets anxious around her checkups. Otherwise she has found a way to move forward each day. I am sure it hangs over her, but somehow she is able to live her life pretty normally. It's actually harder on my husband and I. Just hang in and keep moving forward for your families sake. I have learned that everyone in life has something going on and that you have no choice but to do what you need to and just keep moving forward. Once you get over the initial tests and find a doc you are comfortable you will settle into a NEW NORMAL . All the best to you!

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You have come to the right place to get both information and encouragement. When my husband was diagnosed, we grieved over it which is absolutely normal. Then we looked at each other, realized he is still alive and really quite healthy and made a decision to simply enjoy life and trust that God still loved us and had a plan for us. Please do keep posting and let us know what is happening and our thoughts and prayers are with you.

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Before you have any more tests, I would contact Dr. Bryd's office. They may want to do all the testing. You do not want to get a CT scan and then have it repeated a month later at OSU along with the blood tests. Also, it will save you money. This scenario happened to me.

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Dr. Byrd is booked through April! He seems like the world renowned specialist, but I can get in with another one of their cll specialists in November- is that ok?

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Dr. Byrd heads the CLL research team...there are a number of imminent CLL specialists at The James... all equally qualified.

Here is a link to the CLL doctors...

cancer.osu.edu/find-a-docto...

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do you have experience with the James? I am going to see Dr. Andrizzo

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I don't but I know hundreds of CLL patients who are patients there...

Dr. Jeff Jones isn't listed... not sure why...

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The good news is you don't have to move quickly with CLL .

It's important for yourself and your mother to get a second opinion from a CLL specialist .

30% of people never need treatment although there are usually older.

Some institutions like UC San Diego are studying family members but both have CLL .

The CLL Society website can give you a lot of good information as well .

Be well no need to rush. If your doctor wants to rush you and get a different doctor .

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Sending love from California.

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I'm only the latest of a long line of people to make this point, but while this is a scary and difficult time, there's no need to panic.

I was diagnosed with CLL at the age of 35, and almost 13 years later I'm still on watch and wait, and have never required any treatment. My specialist (the highly regarded Dr Follows in Cambridge, UK) thinks it could be another decade before any form of treatment is necessary.

Each of us is different, and it's entirely understandable that you're concerned and stressed about your diagnosis, especially given your two young children; but equally, don't start by assuming the worst.

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I also just joined the support group and have found it to be so informative. I also now have many questions to ask my oncologist when I see her in December. Try to relax and be good to yourself! I know this is easier said then done!

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Hi sorry you've joined us - you're going through the scariest time. I was 38 with 3 young children too so know what you're feeling. I'm 44 now and very hopeful I'll get to see them grow up (I've had two lots of treatment so far - chemo a year after diagnosis with SLL and am now on a clinical trial of two new drugs and have no detectable disease) - I've kept a blog which might help as it's designed to give hope to people just like you as when I was diagnosed I was given very little hope that I would survive to see my children grow and that was the hardest thing of all. It's abtandme.com - be kind to yourself at the moment and try not to panic which is easier said than done.

Thinking of you

Deb

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I am so glad you are doing well and hope that it continues!

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