Symptoms causing great discomfort - afraid I'll need treatment. Suggestions?

[Agiwood]

I was diagnosed a number of years ago and luckily never needed any treatment till now. In the years between I was diagnosed with Cancer of the Oesophagus; after chemo and surgery 3 years ago I am still around to tell the tale.

Recently my CLL has acted up, at least that's what I call it. I am told I now need treatment which will be in the form of chemo. My consultant is reluctant to put me through this again and there is the risk of the cancer coming back if we do go ahead, but I now have to admit to feeling tired all the time. I bruise easy and have bad nose bleeds, my lymph nodes are growing bigger and the ones in my neck are particularly painful.

I am soon going back to the clinic where we fear they will say now is the time to act. They have made it clear that any decision will be mine and I don't know what to say, what can I expect if I decide to wait and not have chemo? I am not keen on going through that again, and the risk of the return of the cancer fills me with fear. I'm not sure which symptoms are the cll or which are because of the surgery I have had. I am still on fairly high doses of Morphine for pain, but sometimes it doesn't even touch the pain.

I am told I push myself to much; I returned to work 10 months after surgery. It was important to me, but recently its been a struggle. I am loathe to admit defeat, maybe I am just having a pity party and all these feelings will pass.

Does anyone have any advice or input? Can the pain from the nodes be controlled better in another way? This is the worst pain, it affects everything I do. I can't eat well because my stomach was removed, so pain on eating is a daily problem. At this moment I don't feel in control of my life, and I would like some of that control back. How do I get medical staff to understand without sounding like a complaining brat?

[AussieNeil Administrator]

Agiwood, you've had a very rough time so no wonder you are concerned at the possibility of facing chemo again. Given your medical history and current condition and concerns, I don't think any medical staff would consider you "a complaining brat".

Can you provide more information on the chemo you had for your oesophageal cancer and why you've been told that treatment for your CLL may cause the oesophageal cancer to return and what the actual risk is? It may be relatively small with the CLL treatment (particularly if you can get on a trial with the newer drugs) and even traditional treatments may dramatically improve your quality of life. Also, you may find that treatment for your CLL won't be anywhere near as hard to take as what you went through before. Is it possible that you could be eligible for a CLL trial? I'd also recommend you ask what alternative CLL treatments are recommended for you and definitely seek a second opinion, given the complexity of your medical history.

Neil

PS I've edited your question so that it is more readable.

[jangreen]

Hi I can understand how you feel. I had chemo 3yrs ago for cll and I was one of the unlucky ones who had a bad experience. I said that I would never go through it again but like you I may be faced with no choice. I think a trial would be a good way forward and to speak openly with your medical team. I think you must try to make your feeling known and your fears for the future. Best wishes.

[MsLockYourPosts Passed Volunteer]

You should not feel like a complaining brat. If your medical team makes you feel that way then it's probably time to move on. If it is just that you are confused and afraid, which I would think is quite normal given all that you are dealing with, then it's time to talk with your doctors about your feelings. I think a second opinion would also be a good idea, probably in a facility where you can see specialists for both conditions who then would consult with each other about your situation.

Pat