Incorrect Info

BarbM · 04-19-2009, 12:55 AM

I'm not sure what to do....as I was getting my Herceptin infusion last week, I overheard the head infusion nurse tell another patient that Tykerb is the pill form of Herceptin. In shock, I didn't say anything and bit my tongue. Wow, I suppose I will tell my doctor at my next appt....it just doesn't give me much confidence in her or that office. She also laughed when I used ice on my hands and feet during my Doxil infusion 2 weeks prior....the Doxil nurse and the Doxil website quote a study on how it helps H/F Syndrome in 94% of those studied.
I am still in shock that information is being given out incorrectly. What does everyone think I should do? Look for a new Onc?

Mary Anne in TX · 04-19-2009, 04:25 AM

Hi Barb! Seems a bit weird, for sure! Maybe the important thing is how you onc views and deals with it all. Talk to him and tell him all this and then just stop and watch and listen to how he deals with you about it. To me that is what is most important. The nurse may really not be educated on all you discussed. That's not a good sign, but check it out.
My experience is that at my clinic, every single thing that happens to me is driven by my doc. (He and another doc. started the clinic which is now very large and very successful) He rules in the office. He has wonderful people skills and is very positive, but he requires things to be done right and respectful for the patients. It is and feels like an incredibly safe place always.
Check it out with him. Most of all watch and observe.
Best wishes on this and most of all on your journey. ma

Rich66 · 04-19-2009, 07:49 PM

I admit to being very sensitive to situations like you have described. But..and I wasn't there..but I wonder if maybe the nurse was "dumbing down" the Herceptin vs Tykerb issue. After all, they are both used to address Her2..even if Tykerb works on her1 as well..i.e. different. Not saying I'm in favor of dumbing down but it is different than being uninformed. There are ways to ask them what they mean by that to see if they truly are uniformed. The lack of knowledge about countering side effects is disconcerting. You'd think this would be where onc nurses would focus since they have more input into this area. But..ran into similar knowledge deficits when my Mom was taking Xeloda. Although in that case, most approaches weren't readily available on the drug company's website.

chrisy · 04-19-2009, 09:20 PM

It's disconcerting to hear what sounds like misinformation and even more so the attitude towards the ice packs. You are clearly a very well informed patient - and I have had similar experiences where I knew more than the nurse.

Especially in general oncology practices (where they treat all kinds of cancers) it's hard for them to be experts in everything. Some are more receptive than others to learning from the patients. But it sure doesn't inspire confidence.

I would go more by what your doctor is like - is he/she knowledgeable? Interested in research you bring? Interested in consulting with other (breast cancer expert) colleagues? I'd talk with the doctor about what you heard.

Brenda S · 04-20-2009, 08:46 AM

Barb,
Erroneous information should not be tolerated—even when given inadvertently. Unlike yourself, the patient who received this information may not be as fortunate as you in being as well versed in the various chemo regimens and all that they mean to each of us. I would definitely mention it to your oncologist, as I am sure he/she would not want this type of information being given to patients. As we all know, we all have slightly differing types of cancer-even in the HER-2 family; nonetheless, wrong information does not help, and can be a hindrance.

BarbM · 04-21-2009, 11:13 PM

Thank you for the input in this situation. I, too, thought maybe she was "dumbing down" the Herceptin vs Tykerb issue (I like that term). This was info that the patient was asking for on behalf of someone she knows. It wasn't even info for herself. Since all cancers are different and there are differences within the subgroups, she should have told her to have her friend contact a doctor. I am going to bring this up with my oncologist next Monday. Thank goodness I do all my own research, and everyone here has helped to make that possible. I truly believe that this website has the most well informed followers.
Many thanks,
Barb

AlaskaAngel · 04-22-2009, 10:53 AM

Having been a medical worker AND a bc patient, I lean toward wanting to improve "the system". What I've done in talking it over with the PCP is to ask for (and then ask again if necessary) the office to "demonstrate that they really are interested in being accurate" and in "doing better" in a concrete way by setting up a maintained patient self-education situation. When I finished treatment, in respect for my PCP's office and the patients, I bought a small pretty basket to contain their patient education materials, and then donated a copy of the Mayo Clinic Guide to Women's Cancers to go in it. It is portable for the nurses to use with the patients. When I see my PCP I request to see the basket so that I know they are keeping it current.

AlaskaAngel