After having blood tests, ultra sounds & CT Scan I feel I still am none the wiser since my last visit to my haematologist.
These tests were all ordered through my GP & after visiting him to get my results he organised another appointment with my haematologist as the results showed my lymph nodes were enlarged throughout the body, my liver was enlarged & the spleen only a little more since my last tests were done. The bloods showed my haemaglomen & iron levels were very low, with the GP saying that the haematologist possibly would give me an iron infusion.
Well today I went with all these questions about my CLL. Questions about what stage is my CLL at, was he going to do an iron infusion, gene mutation & the blood readings to get answers like “ you don’t need to worry about that” “ no you don’t need an iron infusion “ “ no you don’t need to take iron supplements “ I felt like I was being fobbed off.
I am just getting over a chest infection & had had a X-ray for that with GP telling me there was some other under lying issue going on in the chest so he had that further tested having the results sent straight to the haematologist. When attending today I asked twice about the chest I never got any specific answer. All that I was told by him was “All the enlargements was due to my body fighting the infection” He ordered more blood tests & to see him in 3 months time.
My husband & daughter came with me today & my daughter said the haematologist had no empathy & she felt he was very arrogant.
I feel I should see if I should see another haematologist to see what they have to say.
What do you fellow CLL followers think.
Thanks
CopJen from Aussie
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CopJen-
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I think you’ve answered your own question CopJen. If this guy was your motor mechanic, you wouldn’t know how quick to get your car out of his garage so take your more precious body somewhere else!
You don’t need his arrogance, his lack of empathy or his unwillingness to communicate and explain. Could be all is well and you do just require ongoing monitoring but how could you ever trust him?
If you can get in front of a cll specialist that would probably be your best option even if a little travel is needed. I went to a local oncologist initially and felt much more comfortable once I saw a cll specialist. Best of luck!
There has been a rush of new developments in the understanding of the DNA and treatments for CLL in the last 5 years. It makes sense that a CLL specialist is better positioned to keep up with all the updated information and trends, while someone with a lot else on the docket cannot. Get thee to a CLL specialist!
It is very common for folks receiving a CLL diagnosis to seek a second opinion (or more) from a CLL specialist. And for good reason. There are over 100 types of lymphoma and they have many unique characteristics. Such a broad range makes it nearly impossible for any one doctor to be completely up to date on the most current information.
Additionally, don't be reluctant to engage in self education about CLL. You are most likely the best advocate for your own care. Being knowledgeable about your diagnosis gives you many advantages and will improve your outcome.
Same problem here. My first doctor was a Oncologist/Hematologist. He diagnosed me with CLL. Come back in three months . He was nice but had questions over the next few weeks. Called his office several times and no response. The wife and I decided to go to another Oncologist in the area. Seen him twice and he stated that I will possibly need to do treatments within a month or two. Also the two times I seen him he was reading all this information from a book. The wife and I had enough. We only live about 45 minutes from M.D.ANDERSON. So I scheduled an appointment to see Dr. Weirda. After a day long visit of interviews, bloodwork, and finally seeing him -I have found my new home for myself and my CLL. He did not need a book or any type of resources. He knows the CLL like the back of his hand. He also told me no treatments and come back in three months for a checkup and bloodwork. So my advice- Not only go to another Oncologist/Hematologist but one that is a CLL Specialist. J.R.
Hi I agree with Newdawn move on ASAP. I have had a similar experience and am now with a new CLL specialist who is warm empathic and very willing to answer all of my questions. What a difference this has made to me.
As with any illness your psychological well-being is just as important as your physical wellbeing. You need someone who takes a wholistic approach and recognises the mind and body are not separate entities, each influences the other.
Best decision I ever made was dropping the hem-onc who rarely sees CLL patients and getting myself to a CLL specialist. My whole attitude changed from constant worry and wondering, to knowing I was in good hands and having facts that I understood. All my test results were explained in detail. Doesn't get much better than that when you have CLL.
Dump him!!! cllsociety.org has some doctors from Australia on their list. I don't know whether any are near you. If there is one you could ask here if anyone knows anything about him/her.
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