Hemotologist wants to do a follow up visit. - CLL Support

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Hemotologist wants to do a follow up visit.

CCLandwell profile image
10 Replies

I have been hiding from this since last October. I walked out when I had an appointment to get my CT scan results. I reluctantly made a appointment for next week. I just feel this cancer treatment is s money making racket. This is just my impression. Hopefully the results are good then I will have the rest of my life to worry and wait.

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CCLandwell
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10 Replies
mpaull profile image
mpaull

Hi CLLandwell,

I here ya. Good for you on making the appointment. I think it's important to have a good base line. I have had 3 CT Scans and 2 Ultrasounds in one year. Spent 130,000 on Ritoxin which didn't help the Platelet Count. Stay positive and like me hope to be on the wait and watch for many years. Mitch

Quarry profile image
Quarry

Hope results are ok and good you going.

We could debate the differing approaches of the US medical system (with docs dependent upon insurance company funding...and unfortunately associated lawyers, ear to the door driving docs to cover all possible angles, no matter how remote) and the UK / European systems, but that is not really useful. Neither is perfect, nor can they be.

A CT scan is a valuable tool to allow docs to get a baseline of where your insides are. If you have had it done, you might as well know what is says! Hope your insides are behaving! Good luck

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to Quarry

Routine early staged baseline scans in CLL are no longer recommended... by ASH...the key word being 'routine'... Scans expose us to radiation, which has been tentively linked to secondary cancers...so less scanning the better.

#8 in the recommendations below

choosingwisely.org/wp-conte...

~chris

G1llHa1n profile image
G1llHa1n

In the earlier stages after diagnosis there tend to be more visits and tests to establish what stage you are at.

Once this is done both the tests and the visits gradually get spaced out more if you are at a slow developing stage - which hopefully you are.

Knowing your baseline is important in case the rate of development changes and more monitoring, even treatment, should eventually be necessary.

While totally sympathising with your reaction, being diagnosed with this condition is a hideous shock - would it help you to ask yourself why you reacted this way and what is likely to be the most useful approach to you for fitting CLL into your life rather than it apparently taking your life over?

Cammie profile image
Cammie

Great stuff about making the appointment!

Money making racket ? Cancer is no joke my friend!

With cll being a chronic disease it is sometimes difficult to believe we are sufferers but the cells are there irrespective of how quickly they proliferate.

I understand that the situation is much different in the States than it is here in the UK and the cost is borne by the patient. However, previously, you admitted you panicked when waiting for your results.

One of the most important things in our lives is the responsibility of looking after our health not only for ourselves but for our family etc. I'm am delighted you have taken this step of moving forward to find out about your results. You will find your attitude will change once you get more information and understand your condition fully.The first step has been taken you now have to accept,like we all did, that you have cll.

However, this does not mean the end of all the things in your life before. In fact it will mean that you actually value all the things you hold dear much more.

Please keep us all informed as you start your journey we are all supporting you and wishing you well !

Geoff

Health Care with human beings is a wonderfull activity. Our kind at some point reduced to as few as eight people. Maybe that is so. I can see it to be near a real event. Careful management of our lives have created a planet full of happy people. Even today we can choose this and that to help our happiness. Some choices add, some take away and most without any results. People earn their place on the Earth by providing desire for others. As an old man pain is not worrisome. I do not trouble myself over dealth. But, long ago I began the puzzle of better management. I am active in choosing what I pick. I picked a Doctor to tell me what I didnot know. I pick out what he had to say. I spend my money. I continue to make choices. What are my goals? My goal is this. I am looking to fit the right pieces in the puzzle to put together my happy life. That is what my creator is hoping for me.

CCLandwell profile image
CCLandwell

If you live in the United States you would see and hear the Constant Commcercials of the different cancer treatment centers, they have as many Commcercials as the ambulance chasing attorneys. My Cousin works in sales for a Hospital an he said its all about the money with them. Like politicians many Doctors start off for the good of helping but at some point it becomes all about the money for many of them.

Cammie profile image
Cammie in reply to CCLandwell

Yes I appreciate that as I visit the states regularly .

However this is more about you looking after your health unfortunately you have to do it in the environment you are in.

However, from what I read, cll is well catered for in the USA with many leading experts.

Hope all goes well

Geoff

I hear the anger in your writings and hope it will pass. We've all been there and we have to blame someone. Right? What did we do to deserve CLL? It's so much easier to work hand in hand with your doctors and healthcare team. My oncologist chose not to have children because she didn't feel she could give 100% to her patients as well as to her children. She has called me in the evening to give results of crucial tests. She takes as much time as needed at my clinical visits. She is talented, compassionate and not in it for big bucks. It is unfair to link everyone in the same category. Why does your cousin choose to work for a hospital if he thinks they are only in it for big bucks? Is that his reason for working for them? Your anger will subside and soon you will look and find a doctor with whom you will respect and work well with. Even with facing another round of treatment this spring, life and people are beautiful. Enjoy the beauty in each day. Kind regards, Sally

Bubnojay profile image
Bubnojay

Hi CClandwell

So pleased you have made your appointment and I hope you will be glad you have done so. Do try to keep that old panic button under control, think of us all rooting for you and waiting to hear how it all went.

I understand what you are saying this is a greedy world but lots of really good people out there, like the caring folk who are part of this community. Do take a good book or your ipad or ipod, whatever you have to listen to, and your appointment and any waiting will not seem so traumatic.

I hope the news will be better than you expect.

Best wishes

Bubnjay1

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