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Why does my oncologist say not to ask this?
DanC
38 Posts

Hello,

I have non-Hodgkin's lymphoma, completed 6 months of chemo and still trying to understand symptoms.

I started getting really sick from food at different times a little after lymph nodes started growing. My white cell count went down over the course of many months (still low, for example: WBC - 2.7...neutrophils 1.5, lymphocytes 0.5) I tried telling my oncologist I was sick just before chemo (I didn't know then my fridge wasn't keeping food cold properly) and she said it was stress related, a councillor called me and asked if I imagined being sick.

I became ill many times on chemo and wondered later if it was sometimes food related, perhaps constipation and bad bacteria coupled with low WBC. And if so, is this something the lymphoma and/or chemo made worse because I didn't really get sick like that before in life. It happened maybe a dozen times to varying degrees in 8 months.

I tried to to bring it up today, if the lymphoma or low WBC added to this like that time my fridge wasn't working properly. My oncologist said it wasn't related to the appointment that we were having today and I needed to talk about something else. I'm not sure why she said this.

Is my question out of bounds? Will I continue to get violently sick now after accidentally eating food that is a little off? Why shouldn't I be asking my oncologist this question? It has nothing to do with lymphoma?

9 Replies
DMT
124 Posts

@DanC Unbelievable!!! I don’t know even know what to say! Why oh why could she not suggest who you should be talking to about this issue then. You must be beyond frustrated!

DanC
38 Posts

@DMT

I believe she was saying that she already established it had nothing to do with cancer and the subject needed to be changed. I just don't understand and want to learn.

DanC
38 Posts

Aren't lymphocytes responsible for making antibodies which help the body defend against different types of harmful bacteria (viruses and other threats)? If so, aren't bacterial infections from food a concern? Maybe others who have been sick for long periods of time can understand why someone is trying to avoid it in the future. Surely this can't be out of bounds for an oncologist to answer.

DMT
124 Posts

@DanC I don’t think it should be out of bounds. If she doesn’t have the answer why not just say ‘I don’t know’. I don’t understand about these things either. Maybe talk to your GP and ask them who you should be talking to about this or where could you get this information. I wonder if a cancer dietitian would be enlightened on the subject.

I had a call from a new oncologist this week too. Nothing serious going on, very nice Dr that I have never met. He had specific things he called to talk to me about and sort of rushed me through any questions I had. I think they are so darned busy that they want to keep the conversation directly on the topic they are wanting to address so they can get more done in their day. If I was in your position I would have been pretty upset by the way you were brushed off. My guy just kept saying, very nicely, no, not the drug, no the drugs don’t cause that….

Maybe a call to the cancer line might get you someone with some compassion who can either answer your questions or direct you to where you can get some answers.

DanC
38 Posts
Thanks, I'll try talking to my doctor or the cancer line. The oncologist also said one lymph node started growing again, but she says it's stable and they'll do another CT scan in two years. She didn't even check my lymph nodes this time. I know the lymph node near my spleen ballooned up in a matter of months before, how do they know the rate of growth now? How do they know it will stay stable without checking them?

I left the appointment with more questions and need to talk with someone.



DanC
38 Posts
DMT

Thanks again,

I think that is part of it, they are also really busy like your guy - short answers.

JoeG
16 Posts

@DanC Wow! Unreal! Can't believe that your oncologist was so quick to change the subject. you have concerns and they should've been answered if not redirected to someone else.. I'd try talking with family doctor about those questions, maybe he\she would be better to answer those questions about you issue. Have you gone through other types of treatments ? Chemo might have changed your Diet, maybe ask to be referred to a Dietitian, they might be able to help more understand your food problem.

I know i recently developed intolerance to lots of foods, like fruits and veggies need to be cooked before consuming, no more spices- salt and pepper only and so on… might be something to check?

Hope you find whats going on and wish you the best.. keep us up to date on how you are doing.

Cynthia Mac
3336 Posts
DanC‍ , how are you doing now?

Personally, I think it’s good that you are so “in tune” with your body. When my Dad had prostate cancer, his immune system went wonky: he suddenly developed food allergies to things he’d eaten all his life. So, when you say things like you did back in June, I believe you!

I hope you’ve been able to get it sorted.
tenplay
15 Posts

Sorry to hear about your frustrations with your oncologist. It's quite possible that your oncologist really does not know the reasons for your ongoing side effects and doesn't want to admit his/her limited understanding. It seems that cancer research is still quite immature with new “cures” discovered and utilized quickly without knowing the effects on the body overall. I am reminded of listening to a noted psychiatrist trying to explain the effects of Electroconvulsive Therapy (ECT) and admitting no one really knows even though it has been used frequently for many decades. He said that ECT is like shaking the brain violently while hoping that the changed makeup has positive clinical results without having to know why. I finished chemo and radiation treatments for Stage 4 non-Hodgkins lymphoma in March and cannot help but worry whenever I feel an ache or new side effect if it is back. So let's hang in there.

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