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Preparing for visits

ellen21
Posts: 1
Joined: Oct 2012

I was diagnosed with DCIS almost a month ago. Even after the initial shock began to go away, just dealing with all the information being thrown at me was incredibly overwhelming! I'm still in that phase of what seems like never-ending consultations and second opinions with so much information to digest. I’ve started trying to prepare for those consultation visits a little more now - putting together a list of questions, asking my husband to come with me, etc... I was hoping to get some advice/tips on preparing for visits. What have people found helpful?

I’ve done a little bit of research about this online and there’s definitely a few things out there... this site called Navigating Cancer seems like it might be useful, and there’s also this iPhone app called Avva Ask which I just came across. Seems pretty new and unproven, but it’s supposed to help breast cancer patients prepare for visits. Has anyone used any online tools like this and found them helpful? I’d really appreciate any advice. I'm on the younger side and feel pretty comfortable using computers, so if people have had good experiences using these kinds of things before it would definitely encourage me to try them out. Thanks!!

LoveBabyJesus's picture
LoveBabyJesus
Posts: 1659
Joined: Jan 2011

Hi and welcome!

I am sorry we had to meet this way.

I was dx at 32 and finished chemo and radiation last year. Currently taking tamoxifen.

When I was dx I went online for everything - mistake! Although you can come across some great tips, you can also come across some scary information that may not necessarily relate to your case. If you decide to look up advices online, you can, but don't relate everything to your case as everyone is different and therefore they get different treatments.

I personally don't have any site I can recommend other than the Google search, which will automatically direct you to the right resources. This site helped me a lot too. These ladies (and men) have already gone through it all and now they know what to ask and what should have been asked so I suggest requesting advice on this forum as well.

I asked specific questions related to my case, but tried not to believe too much in stats.

Good luck with everything and I hope your recovery goes quickly and smoothly.

Lets us know what you need and we'll try to advise as best as possible.

Sending you hugs and prayers your way.

salls41's picture
salls41
Posts: 340
Joined: Apr 2012

The radiologist that gave me my news told me first thing..do not get information off of the internet! Now with that said, I did find this fantastic site obviously by searching the internet! We all do it.. and it is not good because it may not relate to our specific cancer. As for apps... I think if you research the app on line it would be ok but really the best thing you can do for your visits is take someone with you and besure you both write things down. Stop your doc at any point you don't understand or need clarification. Find a doctor you are comfortable with and trust completely and you will find peace with your dx. Your doctor will know the answers before you ask because your doctor will understand you.

lynn1950's picture
lynn1950
Posts: 2573
Joined: Jun 2008

The Susan G. Komen site has PDFs of questions to ask for all different stops on our journey. I found these pdfs very helpful and brought the questions with me with a journal to write in to all my visits. Just use the "understanding breast cancer" drop down and scroll to "Questions to Ask the Doctor." Hope this helps. xoxoxo Lynn

survivorbc09
Posts: 4378
Joined: Jun 2009

Information off the internet is ok, but, it can also be misleading. The Komen site does have a lot of helpful questions, and, every time you think of something, write it down. We took a note pad full of questions for most of our first visits. Always have someone with you as you might not hear or pick up on everything said.

Good luck,

Jan

SIROD's picture
SIROD
Posts: 2200
Joined: Jun 2010

I began in the days before computers. I found Dr. Susan Love's Breast Book as a good basic book to learn all about our breast and the different types of breast cancer. It is old c2005 but for basics it is still good read.

Dr. Love does have an online web page: http://www.dslrf.org/breastcancer/

I do use online information Mayo Clinic, Merck Manual both are good ones.

Breast Cancer.org is a good web site to learn about breast cancer: http://www.breastcancer.org

Another good places is Johns Hopkins:

http://www.hopkinsmedicine.org/avon_foundation_breast_center/breast_cancers_other_conditions/

Request for a copy of the results of each tests you have, request a copy of your doctor's notes, the surgeon's notes and etc.

Breast Cancer is overwhelming when you are diagnose. You can ask questions here, many have had DCIS and can might be able to give you some answers.

Wishing you the best on a journey no one wants to be on.

Doris

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

I used the Susan G. Komen site as there are a lot of questions posted there that you might be able to use. Good luck!

Hugs, Debby

kacee999
Posts: 109
Joined: Oct 2012

to every appointment and record the entire conversation. Especially in the early days where you are beseiged with information you cannot possibly digest at one time. My first couple for appointment with my MO I recorded everything and played it back MULTIPLE times. Had I not, I would have missed a LOT of vital info.

disneyfan2008
Posts: 5490
Joined: Oct 2010

The thing that helped me the most other then my list ...was to have someone else come along-second or third pair of ears is great.

I was okay listening then just blurr so afterwards they had info I missed

Denise

dthompson's picture
dthompson
Posts: 149
Joined: Nov 2012

Hi Ellen,
My wife was recently (3 weeks ago) diagnosed with IDC stage 2a grade 3. I was in the same boat as you and went on line for help. This post and the Susan G.Komen Website as well as the American Cancer Society are very reputable websites, some other not so much. I have found this site very helpful. I think everyone on this site is here becasue they care and want to reach out to help or get help. Also do you have someone that can go with you to your Dr appointments. This helps because so much info will be thrown at you it takes two people to catch everything. Also write down any and all questions you have and ask your Dr, N.P. or reach out to this post as I'm sure there are many women here who have or are currently going through the same thing and can answer your questions in a much more personal way.

nanniebgood
Posts: 42
Joined: Oct 2012

First, take a breath, secondly be cautious on internet, it can be really scarey, also im just 6 wks out from my double mastectomy so i know where you are. My husband has been to every md appt, but the one to the oncologist really needed three of us, neither one of us heard the same thing, its very helpful to have a friend go too, some one has to be able to hear beyond the mds first 2 words!! Use your cell phone to record your visits, its wonderful for that, even if someone is with you, you never hear it all or remember it, use your tech wisely, so much misinfo. This is a wonderful site, everyone here has either gone through it or going through it their combined knowlege is awesome, please keep us all up to date and my prayers are with you and your family, be sure to breathe!!

Tux's picture
Tux
Posts: 541
Joined: Aug 2009

Welcome to this website. I agree that some of the internet info is pretty
scary. I found this website & the Komen one to be accurate & not sensational.
I did not "look" around too much more, because I thought I would scare myself
needlessly. I wish you the best. Keep in touch....

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

if you got to your first visit yet. I am on the older side of the spectrum. My memory is fair but if I write it down I can refer back. When I went to see the surgeon I brought my laptop. He stated that this was the first time he had run into such a thing. I told him it would keep me on track. Even with hubby there it was good to have the computer as he got a few things mixed up. I could not type fast enough so I just used key phrases. The computer is where I kept my list of questions as well. One nice thing about our treatment center is that they had wireless internet that we could surf durring chemo. It worked most of the time. Chemo often takes several hours.

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

you might want to save any internet searches for after you get your pathology report back. Start here on this site learning about your particular kind of breast cancer as there are many kinds. For instance I have triple negative breast cancer. There is a TNBC website that had a lot of research articles on that particular type of breast cancer. However, if hearing the statistics are going to bother you then perhaps you want to skip that part of the research. I don't let the stats bother me even though TNBC has a reputation for being scary.

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