Breast Cancer Community

Janie,
Yes you have found out that the beginnng part of this journey is daunting - but you will get yourself organized and that will help with the paperwork. Make sure you also keep track of the dates of the tests and what kind of tests you are having. I have a 3X5 index card in my wallet with all that info and keep it updated so I can have that info available at all times. I started it for my bc and then added all the tests and scans I had over the past 5 years!
Good for you that you are withstanding the pressure from frends - as that turns out to be more confusing ! I knew what I wanted to do for my treatment and once I decided on my treatment options I then put together my bc team, surgeon, medical onco and radiation onco. I love and trust them, and that is important as you will be seeing them quite frequentky over the next few years.
Some places have bc centers where they have the team and work together on your treatment. Large medical centers and universities usually have had more experiences with bc patients than a local facility. So there are pros and cons for choosing one over the other. That too becomes your personal preference. University hospitals do not place patients in clinical trials without your consent. You can ask if there are any clinical trials available if that is what you are interested in. I'm not sure what your friend is referring to - because you must be consulted with and give your consent about the drugs you are getting. I have had doctors tell me something is the usual treatment, but there is a newer drug that they are using and then ask me what I would prefer. So I'm not sure what your friend is referring to about your being part of a durg study without knowing.
I always asked the name of the drugs, their purpose in my getting that drug and ho long the drug has been used and why the doctor was suggesting that treatment. In the case of my chemo - I went along with his suggestions - in the case of the anti-estrogen drug - I did not!
If you are a candidate for a lumpectomy and are considering a mastectomy - I have an excellet article about the pros and cons of each that I can email you. You can find my email address by clicking on my screen name in blue that appears on the top of each post.
You are doing everything that you could do to help you make the right decisions for you. Again, always remember when it comes to these decisions - follow your gut instinct about the doctors, their recommendatons, the place you get treatment and the kind of treatment you get. Always aim for the choices that give YOU peace of mind - as this disease is always with you in in the back of your mind for the rest of your life.
Let us know how the second opinion visit goes - and good luck!
Hope hubby has calmed down too!
Judy

Janie,

Yes, it certainly is overwhelming when you first get started! I thought of it all as a "project" with my breast surgeon's assistant serving as the project manager. She set up all my appointments when I was first getting started.

I agree with Judy completely - you will never be part of a clinical trial without your consent. You won't even get normal chemo treatment without your consent!

Getting a second opinion is a very good idea and will help you in making your decisions about treatment. I go to Dana Farber in Boston for treatment decisions, then the local DF satellite center gives me the treatment. Many big centers will coordinate with your local doctors so keep that in mind. It only gets complicated if you get conflicting opinions. Then I guess you go for that third opinion...lol.

Please keep in touch and let us know how you're doing. We're here to support you through everything.

Hugs,
Michelle

This is an amazing community. I believe I've gotten more good, practical information here than from countless hours searching the internet. I'm certainly glad I found you.

Thanks for the reassurance that I'll not find myself as a lab rat in a study. I'm thinking of my paper work as homework, setting aside an hour or so each afternoon for it. My husband has calmed down, since we got the appointment at Duke (actually I already have three there, with a surgeon, radiation oncologist, and chemo oncologist. My son and new wife live in the area, so that's nice, get to stay with them.

I'm going out right now for coffee with a friend, a nice diversion.

Best wishes to all,

Janie

Yes, I remember also being totally overwhelmed at the beginning...I kept shaking my head as it felt like I needed to get my medical degree in just few weeks!!

Finally, I learned one of the biggest exercises to help calm me down and slow the spin on my world: Breathing! Slow and deep breaths, over and over until everthing took a more manageable pace. It's non-adiictive, readily available and doesn't coast a cent!! Give it a try when ever thlags begin to spin out of control (as they will do from time to time...It's the nature of the Beast!)

Also, I found that I had to approach all the research, doctor visits, tests, etc. as I might approach dining on an elephant..If I were to trake it all on at ocne, I surely choke! However, one small bite at a time was okay! One test, one idea, one doctor, sometimes one minute at at time! To attemtpt too much more weill only complicate things and send yoiu into a tither for sure!!

As far as trials being done without your permission, the answer is "no"...In fact, it is not uncommon when someone defintely wishes to be part of certain trials and is refused due to one protocol or another. She may be referring to one of two things: Becoming part of the information collected which helps form one statistic or another. (ie, Your age might be part of a study which looks at the percentages in your age group dealing with bc, or family genetics, etc. Very basic information which is catalogued in order to help researchers have more information.)

Also, if you were part of a study (having chosen to do so!), there is a good likelihood that you might be part of a "blind study"...One in which you would not know if you were given the drug or a placebo. This is not uncommon, but you enter it with your eyes wide open and fully aware that this is the situation.

Yes, folks have all sorts of suggestions of paths to take...But keep in mind two things: FIRST AND FOREMOST: Most often they are trying with all they can do to help because they care!! Each individual hopes that the informaiton they have may be the key that will spare you and return you to health! (If we keep this in mind, it's amazing how much more we can appreciate their intentions...Despite the fact that it might not be of any medical help, it can definitely be of mental, spiritual and emotional help!!

Secondly, no matter how good one treatment plan may be for one person in one particular case, it might not be good in another! Cancer and people, much like snowflakes, are each different and respond differently. So, one size does NOT fit all! You and your medical team will develop a treatment plan that is best for you!

Lastly, may I suffest that you do your homework and keep investigating! There is no one who will be more interested in your health than YOU!! You must be your own best advocate! Never be afraid to ask questions or to challenge a plan that you think might not be the best for you. The doctors may know alot, but they are not God!! (Even if a few would disagree with that statement!)

We are glad to have you as part of this community. Feel free to come here anytime...We're open 24/7 for one another.

You will be in our thoughts. Please keep us posted on how you are doing.

Blessings.
Rachael