• Communication problems

    Asked by Happyjack on Monday, December 3, 2012

    Communication problems

    I'm finding that I'm not always given as much information as I feel is needed; or I get the information after the fact. For example, I was initially told that I would lose my hair, get chemo brain, and possibly nausea and vomiting. No mention of the other side effects that I did get until I asked about them after I got them. Where is informed consent in all of this? Is this a common practice? My surgeon and oncologist both utilize the internet which I think is great but the rad/onc does not. I will be seeing the rad/onc at the treatment center (he's not the same doc that established my treatment protocol) every week to answer questions/concerns. I'm not sure I will need to see him every week. Have other had this experience?

    13 Answers from the Community

    13 answers
    • BuckeyeShelby's Avatar

      Unfortunately, the list of possible side effects is long. The oncologist just went over the most likely candidates w/me. I did end up with pretty severe leg/foot pain 2 days after my first chemo. This one is a bit unusual, so it wasn't discussed. I was scared to death, because I couldn't imagine being in that much pain for so many weeks. It's really a matter of about 3 days, and I can medicate myself fairly well, so I'm left w/about 3 days of discomfort/soreness. I think it would be too scary to go over every possible side effect, when so many of them don't crop up. Can't help w/the radiation question, as I'm chemo only right now. I'd definitely bring up your concerns to your doctors. I go in w/a whole list of questions each time I see mine. Hope that helps at least a little. And I hope it gets better for you.

      almost 8 years ago
    • ticklingcancer's Avatar

      You have to remember that everyone reacts differently to chemo. No way to really know exactly what you'll experience. The 3 most common side effects are nausea, vomiting and hairloss. So it would only make sense that these would be the side effects your dr would warn you about. It's important that you do your own research on chemo so that way nothing is a surprise. I think I knew more about my chemo and the side effects than my Dr did. Together, we also discover new side effects. Good luck with your treatments.

      almost 8 years ago
    • Harry's Avatar

      Communication is always a problem, but it's a two-way street. Doctors tend to use jargon. Patients need to ask what those words mean. Also, BuckeyeShelby and ticklingcancer are correct, the list is very long and every patient reacts differently. No one expected my reaction to Rituxan, but it happened and now we both know.

      almost 8 years ago
    • NJZ62's Avatar

      I can't complain about not getting info about the chemo process - I'm getting treatment at an oncologists group that seems very organized. Before I ever started treatment, I met with a nurse who explained just how the sessions would go, and I got a whole folder of information re: side effects (and the remedies), nutrition, support programs, etc. Every week when I go for blood draw I fill out a form with questions about how I'm feeling, and a nurse or the oncologist goes over it to see if there's any new (or worse) symptoms, what's bothering me the most, etc. This group also has patients' stats online too, so I can check my blood count, CA 125, etc.

      almost 8 years ago
    • Joachima's Avatar

      My Chemo Oncologist told me of the most common side effects, however, his office gave me printed pages from an internet site that explained in detail the side effects specific to the drugs I was taking. My Radiology Oncologist shared some side effects of external radiation, however, I discovered some possible permanent side effects on my own through internet research. I expressed my concerns to my gyn oncologist & radiation oncologist, and following a PET Scan that showed NED, I was told that I could opt for internal radiation which had less side effects. So that's what I did - internal radiation. If I had not found the permanent side effects of the external rad. on my own, I believe that I would have never been able to make an informed decision.

      almost 8 years ago
    • Nancebeth's Avatar

      I had to have a "chemo education" class and sign papers before my cancer center would begin my treatments. I did end up with a weird side effect they had never seen but the rest of it was all detailed in my education packet.

      almost 8 years ago
    • Harry's Avatar

      I tried to duck the chemo ed class. The nurses insisted I take it while I was getting my first chemo.

      almost 8 years ago
    • FreeBird's Avatar

      Most of the information, I found by researching. The cancer center really didn't go over much for dad. There should be some kind of orientation and more detailed patient education for people who want it. There was a brief patient education just to go visit the chemo infusion room, and talk about the medication. This is one of the reasons why whatnext.com is useful. You can connect with other people and their personal experiences.

      almost 8 years ago
    • Peroll's Avatar

      Its sad to say butmost Doctors do not gwt communication training in Med school and it is one of the most important skills they should have. While communication is a two way street thereare some things we all can do to he;p it along. First is to do some homework and come to appointments prepared with questons and items for discussion. There are lots of places to get info but be sure to check and make sure it is accurate. This approach will allow you to get the Drs to think about treatment alternatives that they might not otherwise consider. Good luck !!!!!!

      almost 8 years ago
    • SueRae1's Avatar

      Communications is a real issue in the medical community and not use in the oncology department. But this issue is a two way street, and unless you speak up your medical team has no way of knowing what issues you are having. Our medical care is a collaborative effort and we need to be proactive.

      I am very fortunate, I can e-mail my oncologist with any questions, and he gets back to me really fast. The the nurses in the infusion department are a great resource, and they deal with side effects every day, they have been helpful, and print up information about my chemo drugs when I need it. My oncologists also have great nurse practitioners who are their partners, and have been critical in giving advice on how to cope with side effects, this includes over the counter and prescription meds. When I had radiation, the nurses were super, giving me advice and ointments to help cope with the blistering, etc that radiation causes.


      almost 8 years ago
    • nancyjac's Avatar

      Every chemo drug has a list of all side effects that have ever been reported for that particular drug. All you need to do is ask your oncologist for it, or google it on the internet,. What your oncologist and the internet can't tell you is which of those side effect you will have because there is no way to know until after the fact.

      Your oncologist and the internet also can't intuit how much information your feel is needed or wanted, only you can determine that. So, if you don't get the info your need or want, ask.

      Just as a by the way, I would be a little concerned about a surgeon or oncologist that needed to rely on the internet for information in their fields of expertise.

      If you are getting daily radiation treatments, it is fairly standard protocol to see the radiation oncologist once a week. This is not only to answer questions, but to examine your skin in the irradiated area to monitor burning, cracking, swelling, etc. so you will need to see him every week.

      almost 8 years ago
    • Happyjack's Avatar

      Thank you all for your input. Yes, I have gone to all my appointments with a list of questions/concerns. I'm just surprised that a written list of possible/probable side effects wasn't included in the information packet given to me when I first saw my oncologist. Having worked in a hospital (not as a nurse though) I know we usually gave patients written information (got a printed information paper upon discharge from hospital after hysterectomy), and with other surgeries/procedures so am just questioning why not with chemo. I know everyone is different but there are still side effects that are expected and those that can occur. I have gone online and found out the side effects of the meds I was given but still feel that it's the doctor who should be sharing the info. Can't always trust what you read online!

      Will be starting radiation tomorrow, told to get blood test the week of radiation and not specified to do so the day before......so I got the blood test last Thursday and had to have another one done today to meet the "day before" requirements even though the results were normal from Thursdays blood draw. I'm also finding that a lot of the offices/treatment centers call the day before your appointment to let you know what to do. I left the house early this morning to run errands and get to several appointments, so was glad that I had called the radiation center before I left to find out that I needed to repeat the blood test and to drink 18 - 24 oz. of water an hour before the treatment. This could have easily been written out for me at the time the appointment was originally made and would have prevented a lot of confusion and last minute hassle to get blood work done in time.

      For those of you who had classes before you started chemo, I think that is a wonderful idea. Getting chemo is really scary and to have someone explain things is comforting. I can't help but compare going to Lamaze classes to "prepare" for the birth of a child to going to classes to "prepare" for chemo.

      almost 8 years ago
    • carm's Avatar

      Happyjack, WOW...this is a great question and it amazes me how many hospitals don't perform informed consents. I am an oncology/end of life nurse and prior to my nursing career, I worked in the field of research and so I know the value of an informed consent. As a nurse and really the rule applies for any caregiver, our role is to educate those we tend to so that they can make informed decisions. We are asking you to allow us to introduce a toxic chemical into your blood stream so the least we can do is go over the benefits and risks. Many people don't realize that the U. S. Patient Bill of Rights states that oncologists recommend two options of chemo because they are the only physicians who can get a kick back for recommending a drug. When some one gives you a computer print out describing a chemotherapy you should demand that they go over that description with you before you consent to the treatment. Go over those side effects even if it means you have to reschedule your treatment for another day. This is your right. I have never given treatment without an informed consent. For those of us who have worked in research, we know that some of those side effects listed have nothing to do with the drug. If you participate in a trial, and while on that trial you slip on the ice on your front stairs in the winter, you have to report that to the trial coordinator. That fall then gets listed as a possible side effect as an unsteady gait because it cannot be proven that the trial drug did not cause the fall so this is why it is important to go over that print out. As side effects are listed, the most common ones are listed first and so that fall might be listed last but by law, it has to be listed. Remember that your oncologist and staff works for YOU, so you have a right to this information and the right to expect an informed consent. All doctors should have general informed consent forms, especially gyne oncs because of the in office procedures they perform like leeps, or colposcopies so to ask for one is not too much to ask. After all, it is you that will be expected to suffer from those side effects, some long term so BRAVO to you for such a fantastic question. It is patients like you that make our job easier because you are involved in your care and your desire for this knowledge only empowers you. If you should need to go over those handouts, I am always here to go over each drug and I would suggest you sign up with a website called chemotherapyadvisor.com. it is free to join and it will explain each regimen and chemo by disease. Best of luck to you, Carm.

      almost 8 years ago

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