First appointment

[Clsmith]

I have my first appointment with the heamotology oncologist tomorrow. I don't want to be alarmist, but I do want to take proper care of myself. I have seen many comments here about seeing a specialist. Is it too soon to ask about a referral to a CLL specialist? I don't even know if this is a silly question, 🤔so be kind. LOL😉

[Cllcanada Top Poster CURE Hero]

Hi CLLnewbie

In 10 years you may want to change your name... 😄

There is no rush to see a specialist, for 90% of patients and many people only go prior to treatment for a second opinion...

See how you get on with your doctor... a good doctor/patient fit is very important as well...

~chris 

[Clsmith in reply to Cllcanada]

Right after tomorrow, I promise to change my name. Could take a while to figure it out. 

[AussieNeil Partner Administrator in reply to Clsmith]

support.healthunlocked.com/...

- when you feel you have graduated

[Clsmith in reply to AussieNeil]

That is very helpful. This group has the answers to everything. Thanks👏

[Newdawn Administrator]

It's certainly not a silly question Cllnewbie. In fact it's an issue of vital concern to us all as we receive treatment and ponder over whether we are receiving the very best that we can.

I'm not sure which country you are in but in the UK, the norm is to be referred to the Haematology Dept of the local hospital and if luck prevails, your haematologist will have a particular interest and skill in CLL. However, all should be at least competent in the subject. 

I'd say go and meet with your Consultant and see how you feel. If it's very early stage for you, you may feel that the advice and treatment you receive feels responsive and competent. As time passes, many CLL'ers ask for a referral to a CLL specialist for a second opinion but continue to work with their haematologist because of travelling/distance considerations. I'll certainly be asking for a specialist CLL opinion once treatment looms or its suggested. There are some very skilled and knowledgeable haematologist's in non specialist centres. Personally I'd be less confident about a general oncologist.

However, you may have a Centre of Excellence near to you which you want to consider and arrangements can vary massively dependent on country.

Hope you appointment goes well and please don't ever worry about asking anything. We don't tolerate unkind on here.

Best wishes,

Newdawn 

 

[Clsmith in reply to Newdawn]

This group of wonderful people has certainly kept me from freaking out. Feeling calm and in control. Thanks to all of you.

[geoval]

Welcome to our group. As Goshawk said, we are blessed by having some real clever folk here. No questions are ever silly. We usually all have asked much the same questions at some time. So, all the best for tomorrow, take a pen and paper to write down some stuff during the consultation. If you're anything like me it is lost in my memory by the time I get home. Actually, my wife now comes with me which is a big help. Keep us posted how you get on. Cheers for now

[Clsmith in reply to geoval]

So bless to have this group to help me at each step.

[Clsmith]

Thanks for taking time to reply.👍

[PE1234]

Hello Cllnewbie 

Welcome to the club .

You will find so much help with understanding of CLL here from people that have had this for some years .

So much support as you start your journey and friendship from people that you may never meet .

I hope all goes really well for you today.It would be good to take someone with you if you can because two heads are better than one as they say .Also you probably won't remember everything that is said .(or understand it ) 

I myself have found so much help here from Neil,Chris ,Newdawn ,Paula and many more .

You will never walk alone as the song says .

Very best to you 

Brenda ☺️

[Clsmith in reply to PE1234]

I am discovering that this group will be my best support as I learn about this disease and try to do away with my fears as well as those of my family. Haven't told them ,yet. Thought it would be better to wait to see what the doctor has to say today.

[PE1234 in reply to Clsmith]

You are very wise to get all the results first .Also be careful who else you tell .My daughter went to pieces until I told her I had no intention of going anywhere .

I must admit I was shell shocked myself but tried not to show it .

This is the best site to be on 

Brenda 

[saintjohn]

No such thing as a silly question CLLnewbie,just concerns,and we all have them,The sure thing is there will be answers and support from everyone on this site,its a fantastic place for information,help,compassion and understanding so welcome to the group.

Regards

John

[PE1234 in reply to saintjohn]

How are you doing ? Hope the treatment is going well .

Brenda ☺️

[saintjohn in reply to PE1234]

Settled down a bit now thanks Brenda,got no immune system though

John x

[PE1234 in reply to saintjohn]

I know what you mean ,when I was first on Ibrutinib I was the same .Be very careful of crowds and colds etc .I used First defence and still do if I know I am going any where where there may be crowds .

It's so depressing when you are so restricted  but summer is coming and you will be able to sit in the garden if nothing else .

Keep going John 

Brenda 😎

[Clsmith]

Thank you John. 

[msuteg]

I went twice (at my hemotologist's suggestion).  Once shortly after diagnosis, then again when it was time to choose treatment.  Treatment was done through my hem/onc, as the specialist concurred with what he recommended.

[BeckyLUSA]

You will find the people in this group to be very kind.  I don't think it is a silly question at all.  I was fortunate as my hematologist/oncologist seemed very familiar with CLL.  I will definitely stay with him as the information he gave me has lined up exactly with all the info I've seen here; however when/if it comes to treatment time I will definitely not be afraid to ask him if there are others in the area who specialize in CLL.  My GP is the one I am having to tutor!  Since I see him for all the infections etc,  he is having to learn more about the disease.  He is being a good sport about it though and he knows we can't mess around with them now.   A good close relationship with your GP is as necessary as a good relationship with your oncologist.  Also there needs to be good flow of information between the two.  Good luck and let us know how your appointment turned out!!

BeckyL

[thompsonellen]

You are probably fine with a non specialist unless your tests comes back with high risk factors. You are statistically very likely to be low risk, but there are those of us who aren't so lucky. In our cases, we need referrals to specialists earlier.

[Loves2walk]

Hi cllnewbie,

I just discovered this wonderful site a few weeks ago, shortly after my husband was diagnosed with CLL - out of the blue.  We knew absolutely nothing about CLL.

While I haven't posted much, I am learning so much about CLL from these wonderful, supportive people. 

Good luck with your appointment. 

[TMGirl]

Hi Cllnewbie,

I just joined this forum yesterday, but was diagnosed with CLL last July, and all the blogs have been very helpful.. I have a wonderful relationship with my hematology/oncologist and he is very knowledgable with CLL.  I agree that it is best to bring someone with you, especially in the early months, because you are still kind of in shock.  I remember feeling just numb at first, but the support of friends in family is much needed!! It took my grown sons a while to really grasp the situation , but just love them through it!! Your positive attitude will help you as well as your family!!  I'll be praying for you as you start this new journey in life!!

Blessings, T

[goneblonder]

There are no silly questions, I have not seen one yet. Its all still new to me though its been 7 months of learning, accepting and change... Lots of people will tell you, you have time as your just diagnosed. Lots will say see one asap. Get your information. Its really what you want to do.  

[Bubnojay]

Hi CLLnewbie

how did you get on at your appointment.  Hopefully it went well and gave you a bit of confidence about the people who will be seeing you in the future.

Best wishes

Bubnjay1