Concerned about secondary cancer risk

Im having both chemotherpay (R-CHOP) and radiotherapy to treat my localised DLBCL lymphoma, but with the R-CHOP treatment, there is a risk of getting leukemia. I am not saying any cancer is good or bad but stage 1 lymphoma is a lot better than leukemia. What sort of treatment gives you a worse cancer? I do not know the percentage or the chances of a risk, but there is a chance you can be cured then a worse cancer appears. 

In this day and age they are still "treating" people with a drug which is essentially poison.

I can just picture the doctor say "weve cured you of your lymphoma but you have leukemia, we will send you on to someone else"

Do not understand why this is 

  • Hi Dan

    I don't understand why you are having this treatment without someone quantifying the risk to you. How could you possibly have given informed consent without that?

    From this paper it appears that the risk is about 5%

    jco.ascopubs.org/.../1568.full

    However that may be out of date (the paper is 10 years old) and other factors may differ from your specific case.

    If I were you I would ask my specialist what the percentage risk is in your case and if he cant tell you ask him to find out.

    Its simply not good enough to ask you to make a decision like that without having all the facts

     

     

  • Hi Dan,

    Are you sure no-one has tried to talk you through the statistics? It would be very unusual and unethical if they haven't.

    As Graham has rightly said, you can't make an informed decision if you've not been given the pertinent facts.

    It would be worth asking your oncologist to talk you through the information, in person. If only to set your mind at rest.

    Best wishes
    Dave
     

  • Hi Graham,

    I havent actually agreed to anything yet, all she said is there was a risk but no statistics facts etc which really concerned me. 

     

  • Hi Dave,

    Like I said to Graham, all she said there was a risk of a secondary cancer. No stats percentages etc, which quite worried me.  

    I do not understand why the treatment can actually give you a worse cancer. It shouldnt be called treatment then.

     

     

  • I guess it's all down to the benefit/cost calculations. For example I know that every CT scan I have slightly increases my chances of developing a new primary cancer because exposure to X-rays carries a risk of triggering new mutations. I choose to have the CT scans because the benefit of knowing when to next zap my cancer with chemo far outweighs the very small risk.

    I can only imagine that your oncologist believes that the benefits of your treatment far outweighs the low risk of it triggering leukemia. 

    I am genuinely appalled that no-one has discussed the statistics pro and con with you. This is the NHS's own definition of informed consent*:

    "Informed – the person must be given all of the information in terms of what the treatment involves, including the benefits and risks, whether there are reasonable alternative treatments and what will happen if treatment does not go ahead." GMC guidance to doctors** is even more extensive and explicit.

    Best wishes
    Dave
    www.nhs.uk/.../introduction.aspx
    ** www.gmc-uk.org/.../consent_guidance_sharing_info_discussing_treatment_options.asp

  • Ah OK well you'll want to talk numbers with your specialist then.

    Look cancer is a uniquely challenging condition - you're not fighting an external agent like a virus or bacteria you're fighting the body you're trying to cure. Cancer has its own mutated DNA and that means that not only every type of cancer is different in many ways every individual one is unique.

    Every treatment has risks - every year people die on the operating table from complications with routine operations - but the numbers are very very low and most people are willing to take that risk.

    The difficulties with treating cancer mean that some of the risks start to get into numbers where the decisions are really tough.

    With my wife's cancer we had run out of drugs that would work and there was one left that we could try but it had a 15% chance of working and was very toxic and if it worked it might buy her maybe 6 months or so.

    The alternative was not to have any treatment but let nature take its course

    What would you do?

    She decided not to have it and died about 3 months later

    It's all about the numbers - if the risk of leukemia was 1 in a million we wouldn't be having this conversation and I'm sure you'd be totally happy with it - I sure would be

    But as the risks start to get into the 5% range that starts looking like a harder decision, I get that, but the decision is up to you they tell you what the risks and the benefits are and you get to make the decision.

    I'm sure that you'd rather have that choice than to be told there's a treatment but there's a 5% chance of leukemia so you can't have it.

    Maybe one day we'll have better options -  getting those is what cancer research is all about - we just don't have them yet