Just Diagnosed- Get Prepared
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Rockym ---------------sounds like it has many more applications than just doc visits. coolThank you so much for the addition------------how much does it cost and where can you get it?
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Rockym--------you can use map quest for a record of your miles. Write in your calendar visit. At the end of the year call each doc's' office for a print out of visits----tell them it's for tax purposes. I have never had anyone deny me. But in case they do, you have it in your calandar book. Same with pharmacy drives. Anything connected with your illness. I have never yet dealt with a company that wasn't helpful in providing the type of info for tax purposes. All have been great. It is probably, the help of the wonderful computer, they click and it's done. They have a happy customer and it makes your taxes easier to compute.------------God bless Gates LOL and seriousness
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Rocky- I just reread your post to see if I missed any thing ___i did----------the being at a distant point and being able to pull out records. Since you are the only one to comment on that. You so totally understand the moment that they say-------we have no record of that-----------an your thinking)*&^$$%&*. And then calmly pull out of your records exactly what they need. You so get what I was talking about. Until you are exposed to the ineptitude of the system, all the words written before mean nothing. Thank you so much for posting , it will have meaning to another
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sas-schatzi, I bought the Livescribe pen around the holidays. I believe it was about $100 and came with a small notepad, earphones, case and an extra ink refill. I also bought a 3 pack of 3-ring regular college lined notebooks for around $15. The pen has been invaluable lately (along with my old secretarial skills :-)). Now that you gave me the idea of mileage, I am putting all doctor, dentist and even therapist mileage in there for my entire family. What the heck... my life's been turned upside anyway. I mine as well have some fun.
I do very much get what you were talking about with doctor's offices. There are just too many problems with the system and when I read your post, I jumped in with getting my files in order, films all dated and organized, etc. After 47 years, I know that many people don't keep it all together and it's our health and our lives and we need to be responsible for ourselves. The office I went to was just a few days behind the previous MRI, but of course I was right on top of it so all was well. I think I even surprised the nurse when I pulled the report out of my magic bag :-).
Well, off to another appointment tomorrow with log in hand/file. A little more poking around. At least it's just an ultrasound to see if they can make my life (and theirs) a little easier for my upcoming surgery.
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Thanks Rockym-----all great ideas. This Livescribe pen sounds perfect. Never fails you get out of the docs office and go blank. An absolute perfect record with out margin for memory error. Keep the suggestions coming.
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http://community.breastcancer.org/forum/78/topic/770796?page=1
Hot flashes -new thread----------Hot of the presses-----lots of good info
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New thread on social security questions answered by a lawyer whose wife has BC. Knows his stuff------posting on a bunch of threads---------go to financial forum
Can't make link work without trouble, not up for it.
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Okay, now that I'm past the first tears I'm trying to get a grip on my diagnosis so far. Surgery is Friday, July 22, and I'm still scared of the unknowns yet. I have IDC, Nottingham grade 2. The doc is doing a lumpectomy and sentinal node removal. He will send to patology for immediate prelim results. I have not yet seen the oncologist until after surgery. Is this the right path so far? From what I've read this seems okay but sure would like more input. He also said I would have radiation treatment in a couple of weeks depending on healing and the path report. Any help here?
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KittyGirl120,
What first popped out at me is your surgery date, that was my date 3 years ago. My cancer was 3.5 centimeters and grade 3. My sentinal node was negative so no further nodes were taken. I had clear margins in my surgery.
I did have chemo and then followed up with 35 daily radiation treatments, and I am now on Arimidex. I did great during all of this and I am doing great today, and of course hoping it stays that way. So, since we share the same surgery date, I am hoping for good news for you too.
I was originally diagnosed on July 14th after finding lump myself on July 1st. Just curious if any of out other dates line up.
I know it tough to wait till Friday, but I can tell you that things will get a whole lot better once you have pathology and know what you are dealing with.
I will be thinking about you on Friday.....................Caren
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KittyGirl120,
I just saw your signature line so I know we are two days apart on our diagnosis dates. I am a little curious that you know the tumor size and the grade before surgery and pathology. Am I missing something?
Caren
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Thanks so much for your support. I think at this point the waiting is the hardest to deal with. Surgery is a little scary with the first part of putting in the dye and mapping. I'm a real wimp when it comes to needles. Hope the pain is reduced because I'm insisting on lidicane (sp?) first. I'll keep things posted as I can after Friday.:)
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thegoodfight,
I got the information from the biopsy, ultrasound and MRI reports that the doc had when I met with him. There is a path report listed from the biopsy. Could change after surgery, but I'm trusting this for now. I'm so overwhelmed with information over the past few days that I've taken the advice of another post to start a log and calendar. I'm writing down my questions and will toss them out at the doc before we start on Friday. I'm just on edge until I can get a full path report and can guide my mind in a purposful direction. It's good to know others out there are helping me think this through. Thanks!
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Sas - thank you so much for posting so much important and practical information! In addition, Breastcancer.org provides a tool for tracking pathology results. You can get it as a mobile app, or as a printable PDF.
Hope this helps!
--The Mods
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Mods thanks that was really nice of you 0
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Just a note for all of you. Once again, the Livescribe pen was invaluable yesterday. I had my first MO appointment and wasn't happy about some of the news he was giving me. When I mentioned the Oncotype DX test, he said it was for post-menopausal women and that he could send it out for me, but brushed off the discussion quickly.
Later on, I was wondering if I had really heard him right because I thought the test was for early stage ladies like me. Well, I listened to my pen recording and saw my digital notes, and then I realized he was taking about post-menopausal, node negative women. Although he didn't make himself really clear, it was clear upon listening again. This information made a big difference and helped me research a little more before my RO appointment today.
Initially, I thought he was giving me misinformation, but he was accurate. So as much as I am going for a 2nd opinion and he did creep me out a little, he did indeed know his stuff. I'm taking my pen to my RO today. I feel she is way sharper then the MO and may have some real statistics for me. It looks like my 2 positive nodes that were not the SN leave some room for discussion and the Oncotype DX test is now being used for ladies with my dx (although on a trial basis). Wish me luck!
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Rocky---------your additon of the LIVESCRIBE pen sounds invaluable to our quest. I hope many pay attention to this. It will cause less communication errors as you have found. As you have also found, it will give each time to contemplate what was said, and do the research based on actual words. . And as necessary you can replay for the 2ndry consult what was actually said versus what your memory of what was said. Thank you so much for adding this to the thread. IT IS INVALUABLE.
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Awesome information for this newbie! Thanks.
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KittyGirl120,
Your situation-biopsy, lumpectomy with sentinel node biopsy, followed by oncologist consult and radiation is just like my plan. It is overwhelming! I hope it went well for you. I have surgery tomorrow and am not too nervous. How did yours go?
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BUMP
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Dear Sas,
This list you've written is so invaluable to the new patients. I just found this thread and wished I had known about it when I was dx'd last year. I do have a binder, I used the Avery Business card holder for all the doctors' business cards. It is on a 3-ring sheet. I also put some clear view sheet protectors in the binder as they are handy to tuck in receipts etc.
I keep an original copy of notarized medical directives in the binder just in case anything happened and my husband would have a hard time getting through to the doctos/hospital.
If I come across anything else I will come back and add it to this thread.
Sas, you are an Angel
{{{{{HUGS}}}}}
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Diamond Girl-----thanks for your kind thoughts. Yes, please add pearls as you find them. Rockym suggestion of the Livescribe pen is very interesting if you have read it above. sas 0
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new to this whole thing--just found out yesterday. I posted my first entry in another stream and directed here. Much easier to write a second, less emotional, post now that I have finally seen CANCER next to my name--not a lable that anyone wants.
Question: How do you handle telling people. My GP told me to talk with my husband but all I see when I go to tell him is how I am going to change his world I can't even begin to imagine how it is going to be to tell my children. How do you handle feeling this horrible about...now here I go crying again.
How did you guys do it? What makes it easier...time.
I am so not used to not having control over my life, my cancer yodas some advice please.
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Maureens, it sounds to me from this post and your other one that so far you have an opinion that you have breast cancer, not a confirmed diagnosis.
In order to get the most views and feedback, you should go to the forum you're already in here -- Just Diagnosed -- but rather than post in the middle of an on-going thread, look for the icon that says something like New Topic or Start A New Topic (don't have the screen open to be sure). Click on that and start your own thread. That way, far more people will find it and be able to give you specific input for your situation.
We know very little about your situation so far, but a GP telling you you have bc from mammo & u/s images is not a definitive diagnosis. If he thinks you have bc, you need to have a biopsy. If I was you, I would ask immediately for a referral to a breast surgeon, and let that kind of expert take it from here. Your GP's diagnosis and advice sound way too premature for my comfort level.
But please start a new thread for a lot more input. (((Hugs))) & welcome (although I wish you didn't have a reason to be here!) Deanna
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Maureen I so, agree with Deanna-----There are generally two types of threads. Informational/teaching threads which this one is and conversational threads. Deanna 's suggestion of starting your own thread or looking at the forums for a thread where people are effectively talking to one another. I will look at the forum list and see if there is already a thread . going that I could suggest
Deanna is right on mark with the suggestion to ask for a referral to a breast surgeon. Talking with your husband may be the thing to do, it depends on you. Each Significant Other relationship is different, only you know him/her well enough to know if you should tell him/her now or wait.
I definitely suggest you don't talk with the kids until you have a definitive diagnosis and that can only be done by a biopsy as Deanna said. It's an emotional roller-coaster ride. The kids can skip this ride until you have all the details . Same with others. There are likely some close that you will want to confide in, but news travels fast.
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Forum Index → Forum: New to breast cancer? New to this site? Start here. → Topic: Just Diagnosed?
http://community.breastcancer.org/forum/131/topic/775382?page=1#post_2630029
This thread is an overview of the forums and how they are organized , it is written by our wonderful Moderators, or as we affectionately refer to them as the Mods. I know you want to talk with someone right away. It's tough your scared. But when I first came here, I didn't take the time to read these and it took me longer to get used to navigate the THREADS. Click on the PINK and it will take you there.
Forum Index → Forum: Not Diagnosed but Worried→ Topic: Breastcancer.org: Waiting for Test Results and Managing Fears
http://community.breastcancer.org/forum/83/topic/774049?page=1#idx_1
Then click on the links within the thread box The links will take you to two teaching threads by BCO Mods. If it's your first time here start with Managing Fears first. If you haven't started into testing save the "Waiting for Test Results" For the next time you come.
Forum Index → Forum: Just Diagnosed→ Topic: 29-ish Months Post-Diagnosis: You Will Get Through This!
http://community.breastcancer.org/forum/5/topic/773420?page=1#idx_25
This thread is a member describing her fears at the beginning of hearing the first words Breast cancer and what she would have done differently and what she needed. Now she is a survivor retelling her story to help you now because you are at the beginning. Click on the link.
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This is a good start. Your mind is rolling in words and info. It's tough to absorb because your frightened by the unknown as you read this. At this point you can create your own thread. Go back to Forum index there is a red box that says "Start New Topic". When the box appears write your story. After you hit the submit button, your topic will appear in the "Active Topics". There are many members that keep an eye on this scrolling list. I suggest starting your topic with "My First time here, I'm (screen name) and I'd like to talk". There are many members like Deanna, that will pop in to help you with your first questions. You have begun a journey none of us want to be on, but BCO will become a part of you for a time in your life, that is going to be challenging. WE are here to help each other. (((((((((((hugs)))))))))))
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Picking a screen name. You will see many very creative screen names. I suggest that you not use your real name, as anything that we write can be seen by others. Many members are very protective of their anonymity and even in private PM's-------(Private Messages) will not use their real names. I"M me and my dear dog. Not too creative LOL, but I didn't realize that others could see us, so, when I changed my screen name, I looked around and saw Schatzi. We became sas-schatzi. If you have already created a screen name that can identify you for real, now is a good time to change it. Keep it short if you can, it's less typing for people responding to you., but a screen name that makes you happy is important, so, if it's long we all deal with it. 0
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Bump
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Hi all
Has anyone done a Canadian version of the list originally posted by sas-schatzi?
There are many differences between canadian and american health care and I could use such a list. I am in Ontario..
Thanks in advance
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caro46, how would a Canadian version be any different? Part of this thread is to say KEEP TRACK of everything. Stay organized. Keep files, films and notes handy. I think that every single report should ALWAYS be with you in the beginning of your dx and the planning of your treatment.
When you are working with a BS, MO, RO, PS, family doctor, radiologist, etc.(whether they are a "team" or not), it can get ridiculous. These doctors are only human and some have offices busier than Grand Central Station and have no clue what the other is doing.
You are your own advocate. If you think there may be some differences with Canada, you should post what you are experiencing and perhaps we can add some tricks and tips. Thanks!
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This thread is about being prepared------------and will continue to be so, but add to your list about endingit.
There will come a time that you will no longer need BCO. It is different for each person. Some need to stay here b/c no one in their life gets what they have experienced.
Others need to stay b/c they have developed friendships, that are beyond dissolution, by leaving.
Others want to stay b/c they love helping others.
Why we stay or why we leave, is to each our own, we love when we are here and remember when we our gone
But always , remember you are valued, and your return is received joyously, because you LIVE
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