As we prepare for tomorrow's meeting with the oncologist I thought it might be interesting to see if any of you have questions you think we should ask the oncologist.
I won't be responding to these questions on the blog, but I thought you might have insites that could help us in our meeting tomorrow. Feel free to post the questions and we'll use the ones we find the most appropriate for the meeting.
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6 comments:
Hi Dave and Karen,
As I mentioned in my email, my friend Mark has survived 3 brain tumors. The last one was zapped completely by a painless radiation procedure called Gamma Knife. Interestingly he wasn't given this option given at the V.A. hospital (they wanted to do surgery again). But through the intervention of Sen. John Mccain he got the more specialized treatment at the Barrow's Neurological Institute in Phoenix.
All of this to say that Gamma Knife works very well with certain kinds of tumors (not sure about kp's) and it may or may not be offered. In Mark's case, it wasn't offered because the VA didn't have the equipment. It may be worth asking about when treatment options are discussed. (see my email sent 9/22 to your AOL address for more info and Mark's email address if you want to contact him)
praying and praying... :)
Here are some:
How often will I receive radiation therapy?
How much time will each treatment take?
Will each treatment be the same? Does the radiation dose or area treated change throughout the period of treatment?
What can I do to get ready for this treatment?
How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?
Will you describe what I will experience when I receive radiation therapy? Will it hurt or cause me discomfort during the treatment?
What are the potential side effects of this treatment? How can I ease side effects?
How will my skin be affected during radiation therapy? What skin products can I use each day? Shampoos, etc...
Do I need to be concerned about sun exposure?
Should I avoid certain foods, vitamins, or supplements?
What are the possible long-term effects of this treatment?
Will this treatment affect my fertility in the future?
Are there special services for patients receiving radiation therapy, such as certain parking spaces or parking rates?
And I found a pamphlet online that might help some (if you haven't already gotten one).
radiation pamphlet
No questions from me. I've been checking in regularly, but keeping quiet. Just wanted to say that I'm still thinking of you and so glad to hear how things are going.
Take care!
Eydie
Dave & Karen -
My only experience with oncology goes back to my Grams experience & I will tell you her oncologist is a top notch well respected physician in his field but his bed side manner is best described amoungst friends as "rude & unsympathetic." I think that in this profession they deal with situations of such gravity that they loose the personal touch as a protective measure & stick to the science & the motivation of the patient. The Drs do know what you will go thru basically, but they often will not tell you "what to expect" as it is a deterant to individuals/families quest. They also don't want to get you thinking to much & "somatizing" symptoms. You know the "what you don't know wont hurt you" idea.
I think you indicated that no chemo was a possiblity & what a blessing that will be if it is not required!
As for the radation, sometimes this requires a tattoo to ensure proper placement of the radation on each treatment, I think there are some alternatives to this method & would be curious about those options.
I would also ask about a support group for cancer survivors & families. This type of treatment is something those who have never experienced can not always understand & it provides a fellowship for everyone involved, even the kids. I think it can make things more "normal" when you reach out to others that have a like struggle. This is also a good outlet for discussing more "homeopathic" efforts that can assist with some of the side effects.
Lastly & not necessarily for the Dr but his office staff or your insurance contact, cost concerns & some direction or advice on this subject might be beneficial as the medications that go along with some of these treatments are astronomical ($2600 for 30 pills which is a months worth can be devistating) even with insurance. Ask about options & information on sampling & study programs!
We Love You & Keep you in our Prayers. Hope to see you in November for Grama Kroekers B-Day!
Will & Shelley Isaak
The best questions you can ask is:
How do I feel about this oncologist? Am I comfortable, is all of the information in terms I can understand, is there compasion and a caring manner, do we feel rushed, will we be able to call at any time with questions or concerns regarding the treatment?
There are lots of oncologists and they all have access to the same information but you want to go to the oncologist that communicates best with you. Personalities are very important and we found that they are not intimidated if you ask to see someone else. Just breathe and take it in and let God's comfort and prayer be your guide...but be sure to ask for what you want. If this is a slow growing thing you have time to make the right decisions. God be with you and in you and around you tomorrow. You are all in our prayers.
D&K in Spokane
I don't think I know enough about cancer (though it has been in my own family) to know what questions to ask.
However, I heard on the news last night that some guy was just awarded the nobel prize for his research on how to stop certain genes from acting themselves out. If cancer is genetic, this could lead to genetic cure down the road. Perhaps you could ask him if cancer is genetic?
I am praying for you all today.
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