I live in a city with one of the five best cancer hospitals in the world. Princess Margaret in Toronto, Ontario. They have directed me to a hospital that is not even affiliated with them. While I am battling to get accepted there I am not seeing any specialist. and am starting to get anxious. I was not aware of any symptoms. This diagnosis is the result of an annual blood test. Is it critical that I see a specialist quickly?
HARRIS
WELCOME!
You suggest this CLL diagnosis was an incidental finding and that you have no symptoms - this would suggest a common CLL diagnosis scenario, and that you are likely not needing to be in a hurry to get treatment. If that was the case the blood test that suggests the diagnosis would show if there is urgency, such as anaemia or low platelet count.
So Specialist input as critcally urgent - very like not.
Your Family Doctor would be able to advise you, and hopefully reassure you. Thats what would happen here in the UK, I am unsure what arrangements you have your side of the Atlantic.
There is a lot to take on with a new diagnosis such as CLL. Feel free to keep in touch - no such thing as a silly question.
Many of us have had CLL for many years, and have become quite expert - as patients,
Jig
Thank you for your reply. I am not sure if it's my age or lack of street smarts but I am not going to let CLL take over my life. I have always been careful about washing my hands; from here on in I won't be mixing with large crowds often. When I go to a movie, play or symphony I'll wear a mask. The days of parties have been over for several years as my party goers have moved on to where ever it is we head for when we stop breathing.
I am happy to have found this group and I will probably check my computer every other day to see what is being discussed.
Take care. Feel healthy.
Lovely to hear from you!
This group has been a great help to me. I found it 1 mth into my FCR chemotherapy. Wish I'd found it before, I believe I would have saved myself much angst.
Please do keep in touch.
Kind regards
Jig in a chilly windy UK
Hello JigFettler
I would second that, finding HU-CLL was a real blessing, just wish I had found it when diagnosed. Blessings.
I also live in southern Ontario and under treatment. Initially, you will likely be seen by your family physician who will refer you to a hematologist if you have no symptoms but your blood tests indicate something wrong. There are lots of excellent hematologists in the Toronto area who may continue to see you while no treatment is necessary (the watch and wait) period.
In my case, my Toronto family physician referred me to a hematologist at St Mike’s. She diagnosed me with cll and eventually referred me to a cll specialist when she decided that I needed more specialized care.
You are correct though that Princess Margaret is an excellent cancer hospital. In fact, Toronto is blessed with two wonderful places to have your cll treated - Princess Margaret and Sunnybrook. Both have world class cll specialists.
But to answer your question, generally it is not critical to see a cll specialist immediately especially if you exhibit no symptoms. In fact, because there are only a handful of cll specialists in Ontario, it might be difficult to get a referral to one of these doctors. Most larger Ontario hospitals (in my case, St Catharines) have very good hematologists or oncologists who have lots of cll patients
You may also want to get your blood numbers and post them on this site (remembering to tick the box on the bottom of your post to ensure your privacy by having only community members see your post). There are some excellent members who can help you figure out whether you are getting the appropriate treatment.
Thank you for your response. I moved to the east end of the city before my diagnoses and the hospitals I would be happy to be with have all directed me to the one hospital in the city I do not want to be affiliated with. Fortunately, I don't need treatment at the moment so I'll continue to follow up with hospitals and doctors associated with them until I find the right medical attention. The group will hear from me as I pursue my goals.
Take care. Feel well.
Hello, Sorry you have been diagnosed with cll. It is chronic and may not need urgent treatment. The main thing is to find out what stage you are at. I have had very good treatment from the haematologists at my local hospital. Hopefully you will just need monitoring.It was 9 years before I needed treatment. Others need it sooner. Once you have discussed the situation you may just need monitoring. Treatments are good now though and I am sure if you need a cll specialist you will be referred.
Lets hope you dont need treatment yet. We expect something will be done when cll is diagnosed and think we are being neglected if not.
Once you know the full picture you will get help if you post again. Anne uk
Thank you for your interest. I appreciate it. I have always had good health and have just recently slipped over the fence into CLL. I have a recurring eye infection which I am attributing to a compromised immune system. So I should probably see someone soon. I'll keep you posted on this journey.
Take care. Feel well.
So glad you contacted this forum. As others have already told you, your GP or a hematologist are able to watch over your care. I'm 4 years into W&W, 73 years young, no symptoms and I see a hematologist every 4 months for blood work. Research on our behalf is progressing very well.🙂 Sandra
WELCOME, so happy you have found our community. We have some very well educated, informed and we are a very friendly place. We fully understand that we are all very different but we support each other…..you are never alone! No question too silly. We are here for you!!!
All the very best!
Panz ☘️💕🙏🙂
Hi Woman89. I live in Toronto and see a CLL specialist at Sunnybrooke. I, too, found out I had CLL via a routine blood test. I have been on Watch & Wait for three years. There is a CLL specialist at Princess Margaret too. I chose Sunnybrooke because it was closer to where I live. Don’t panic. Ask for a referral to either of these specialists. Ask for a FISH test which I got right away. A haematologist or CLL specialist would do that test, perhaps your GP could ask for one too. Mine did so I was armed with that info when I saw the specialist. It will show your chromosome markers. If you want to share, look at your WBC, (white blood count) platelets and haemoglobin numbers or ask your GP for now if she can explain them to you. You are probably nowhere near treatment at this point and may never be. As you read more on this site, many never require treatment for years, if ever.
Hi Curling123
Let me know if you need any info on my specialist at Sunnybrooke if you decide to see one.
Hi Curling123:
Because the hospitals are so busy neither the doctors nor the hospitals will accept me anywhere but Toronto East General. I have an apt. with a hematologist on the phone at the end of this month. Further, I fell out of bed a few days ago and ended up in the hospital. One of the doctors there said there was a minor problem with my blood and he would not diagnose it as CLL. I will report after my telephone meeting with the hematologist. Thanks for writing.
Hi Curling123,
Everything in life is relative. I would like to be treated in Sunnybrook or one of the hospitals affiliated with Princess Margaret. Every hospital has referred me to Richard Garred Hospital which was Toronto East General because I recently moved to the east end of the city. I refuse to go there. As far as I know, it does not have a reputation as a treatment center for cancer. I believe we all have a choice when it comes to making a decision about our care and hospital. The battle continues.
What is a FISH test? I have never heard of it. As for symptoms I probably just didn't recognize them. I have a recurring eye infection and a very itchy back. I have an apt with a specialist for the eye infection, but not the itchy back The meds my doctor ordered do not help so I would like to see a hematologist as soon as possible.
Having CLL is not something I worry about. If we live long enough we are all going to get something unpleasant. I am frustrated because I am having a problem getting treated in the right place. Once I get into an acceptable hospital I will consider myself very lucky.
Feel well, and enjoy every day. Days are precious.
Sorry to hear about your diagnosis Woman89. This is a very good online group and you will learn lots. There are several good hospitals in Toronto besides PMH and Sunnybrook, I think what's most important is that you find a knowledgeable, caring, hematologist / oncologist that you feel comfortable with, who will make the time to answer all of your questions and address your concerns. All the best, CAVE
Unfortunately, I moved to the east end of the city before being diagnosed with CLL. Both Sunnybrook and Princess Margaret have redirected me to Richard Garron Hospital {the old East General}. I have refused to go there. They do not have any affiliation with the group of 8 hospitals Princess Margaret works with. Nor do they have any kind of good reputation in the cancer field. I will continue to press for Sunnybrook. It is close to where I live. Parking is reasonable for patients and it has an excellent reputation. I will settle for any hospital that is not too busy for me. That's the excuse Sunnybrook gave me for not accepting me.
I presumeCovid has put a lot of pressure on hospitals and they would as soon not take on any patients they can move to other locations. I have been told Richard Garron {East General} is my catchment area. Since ambulances must work with catchment areas and I don't need an ambulance, they will find me hard to put off. I'll let you know how I make out.
I see Dr.Spaner at Sunnybrooke. He knows the latest treatment for CLL if you ever need it. Your GP should send a referral to Dr, Spaner or the specialist at Princess Margaret, along with your blood results. I don’t have Doctor’s name at Princess Margaret but wouldn’t be difficult to find out. Itchiness can be a symptom. Not sure about your eye infection though. I am. Not aware of a CLL specialist at East General.
Yes, please do. Push your GP to send reference to PM or Sunnybroooke.
Hello, new diagnosed Cll and have questions
I am beginning to realise CLL might be serious. 
Recently diagnosed with CLL and was wondering if I can still have massage and manicure/ pedicure.
New To CLL and I had Covid in March 2020.
CLL recent diagnosis- worries
