Just Diagnosed- Get Prepared
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Thank you SAS, well said
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Another good item to have is a portable hand held scanner. I have the vu wand and plan to use it to scan images to make digital copies as well. You can scan any flat surface with it. Up until my recurrence I used it pictures and scanning images that I could not get physical copies of, now I will use it as part of my staying prepared kit.
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I was just told the results of my pathology yesterday. I have infiltrating ductal carcinoma........and that is all I know......seeing a surgeon today to find out more.......I am so very scared......trying to read everything I can.....maybe that is not such a great idea...TOO much information possibly....Some of the posts I have read are so inspirational.......<3 My appointment is at 4pm......the waiting is KILLER!
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Best wishes to you Druanne. I was in your place with the same diagnosis in 2006. I am okay now and will keep you in my thoughts. Please post as you get more info.
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Thank you so very much
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Druanne------nothing in your life is harder to read than a breast pathology report. I'm a nurse used to reports all my life. But for eons there have been womens centers separate from standard surgical units. I new nada about breast Path reports. Go to the main board here at BCO. That's how I found this whole site originally. They give the most understandable info. Since your appt. is tomorrow, you may just want to let it go tonight, but who knows your adrenaline is pumping. But even with as good as BCO's explanations are, you will still ask your surgeon ----who, what, when, where, why, what do you recommend, what other options do I have, Are you offended by 2nd opinions(know of one doc that dismisses his patients, if they get a 2nd opinion--learned this thru an ONC---said "well he's off the list for a first consultation")
Tomorrow if you can have the 2nd person with you so you can listen, The live scribe recording device that Rockym described. At least ask the doc to talk in English. Tell him simply -you will raise your hand at half mast, if he's using language above you, tell him not to be offended , but you need to understand his words. If you start with this and say it pleasantly with a laugh , he/she will catch on soon enough.
Druanne-------find the religious segment on BCO that you are affiliated with , they can be of great support. L&H&P's (Love and hugs and prayer's) sheila
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Diamond Girl______thank you. I'm blessed by knowing you
Kenyo hunt----where do you buy this and what is brand names, and money cost-------great idea!!!!!
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sas-schatzi: Thank you so much for all the great information and taking time to write!!!! I feel so much better after my appointment last night.....my OB GYN delivered the news to me in such a terrible way, I felt like I had weeks to live....The Dr. I met last night was so wonderful in explaining things and even pointed out some "positive" things about my tumor.....if there can be such a thing
He said my cells were not aggressive, were not into the blood vessel sample they took......receptive to hormones........and small in size........I thought it was HUGE and was gonna grow even BIGGER over night!! It is hard not to think the absolute WORST!! We talked about all kinds of things......Next step is an ultrasound on my right breast to check it out (my mammograms show nothing because of dense breast tissue)........and a biopsy on a lymph node under my left armpit 
......Having these things done Monday.......They are connecting me with an oncologist right away so I can meet her and we can have time to discuss the many therapy options/scenarios after surgery........I am still scared beyond comprehension and cannot believe this is happening to me.... but at least I have somewhat of a better understanding of things and the start of a plan of action...........I am so very happy I have found you all and this forum......gives me hope........and a little bit of sanity during this crazy time in my life.........<3Druanne
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Druanne , we all have been where you are now those first days, then weeks of dealing with BC scare the hell out of us. It sounds like you are on the right track now. If someone starts to scare you develop a quick stop mechanism. "Sorry, we deal with the positive only". Learn what you can , but don't let it take over your life. Harder to do , than say. Our tendency is to want to know everything, particularly, outcome. TRY to take one day at a time. Go back and try to incorporate those things suggested by all, that fit into how you live. If something doesn't work for you then don't do it, but it may lead you do something even better that does. If that happens , please, post for others.
Now is a good time for the suggestions of keeping your ring binders, Copy of records etc.
Sanity is relative? Were you sane before? LOL. Hugs sheila
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Thank you Sheila......LOL no I wasn't sane before so why start now!!! I just bought a binder, notebook and day planner yesterday to keep all this stuff straight in........I already have 3 different appointments and KNOW I will miss one if I don't write them down. Two appointments even changed times already! One thing that is pretty cool, I just received an activiation code for a website called "MyChart" has anyone else heard of it? All of your records and appointments are all right there! I am going to print hard copies out of everything and put it in my binder. Feeling ok today......gonna have a weekend......I even feel like Christmas shopping which I am finding STRANGE!
Hugs back at cha!
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dRUANNE SORRY BEEN ABSENT AWHILE-------- be wary where you are posting medical info on an unknown website, better to keep your own record. Besides, you never know when your own apptoinment book is going to be needed. I still have ours from 2009.
Go back to my section on ringbinders LOL, you'll need at least 4-5. It's in the intial header. Hope you see this.
H&L&P's sheila
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Thanks Sheila!!! I do have a binder!! Mercy Health System puts out the information on their own secure website......it is just a place I can go to look at all the results from my tests & they also put my appointments on there.......but I do keep my own records too....
Thank you so much! HUGS!!!!!! Love & Light to you!!!
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Druanne-so happy you caught the note. So, happy the facility you are dealing with understands you rights to access your records. ------RARE----. Hope all is going well.
For others reading this note that don't have the same access to there records that Druanne does-------- you can pick up any medical info from medical records by going in and signing a release statement. They will ask for a picture ID. If someon else does it for you you will have to ask for the procedure. You never have to wait until adoc's office visit to get your info. I have often had it a week or two ahead of the doc. Advantage is I could do my own research. Walk into the office and have a list of questions. Two situations, I brought up surgical alternatives that the docs had never heard of------ONG&NEUROLOGIST----glad the neurosurgeon new of the procedure. Was getting a little nervous LOL.
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Hello there. I'm newly diagnosed (Dec. 12th) and all this is very confusing. Can someone direct me to a list of the acronyms everyone seems to use here? MX, RO, MO, BS, PS, etc., etc. I'm trying to learn this new "lingo"...
Never mind....I found the list of abbreviations!
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A few seconds ago sas-schatzi wrote:
No one to my knowledge has tested charts yet. They are NEVER washed. They must be a hotbed of bacteria. Think of all the hands that touch them. I believe they need to go through a high temperature wash after each use. If a patient is there over so many days the chart should be changed and sent through a high temperature wash with chemicals etc.-------Periodically, you will see studies that show lots of other things that have been tested, even Doc's ties(awful), stethoscopes, handheld cells, phones, EKG leads, computer keyboards. Other nurses used to laugh at my OCD of cleaning at the start of each shift. I was not only trying to protect the patients, but US.
Started with noticing zits, in a certain pattern on my face. I went through puberty, basically, without zits. Then noticed a similar pattern on the other nurses. Cell phones in hospital were handed off to each other at shift change. My research showed a really good study out of Israel on the topic. The four studies from Usa were all lazy studies. They all sited the Israel study versus doing any of their own microbial studies. Except one that sited a study of the Bacteria on EKG leads. Hand wiping EKG leads did little to remove bacteria. The study recommendation at the time was for disposable leads, but they weren't dependable enough at the time. Imagine my horror when waking up after my failed chemo that almost killed me, and they had put on telemetry leads across still healing Mastectomy wounds. Off they came--pronto. The nurse taking care of me reacted in disgust that I was so uncooperative with my CARE.
I felt like Felix Unger in the" Odd Couple". I'd have a talk with all newbies about cleaning the cells and beepers before handing them off. Even for break coverage, let alown at shift change. Cleaning their medication binders, the computer and Pixis keyboards.
Also. nix on fake nails-----horrible. First reports came in 1998. It took several years for it to become the rule. It only happened after Joint Commission on Hospital Accreditation made it a "recommendation" and that they would be looking for policies on it.
If a doc comes in with a dirty lab coat send him on his way, No hand washing by anyone---speak up. Hand washing should go up to at least 4-5 inches up the arm
Jewelry even wedding bands should be outlawed.
Watches should be done away with in hospitals. They have clocks in every room. They just need to have a sweep hand to do pulses.
All this stuff can be googled. I should think where else this can be posted. People can't protect themselves against that which they don't know about.
All IV poles and commodes should go through a big wash container. Suggested this for the new hospital-------------------------- for OR tables, they did it.
iT DID MAKE A CHANGE ON COMMODES:---------after five commode brougth to my mothers room I figured the only way to get a clean one was do it myself. Considering she had aLready coNtracted a hospitaL aquired ======c-diff------ clostridium difficle- THIS INFECTION CHANGED HER LIFE FOR 9 YEARS TILL SHE DIED. -----------FOR OTHERS IT CAN KILL ALLOT FASTER [F YOU DON'T KNOW WHAT YOUR DEALING WITH........SHE WENT IN WITHOUT IT . CAME OUT WITH IT----88 diapers a week---------->>>thenhome remedidies worked versus drugs.
Anyone throwing dirty linen on the floor should be retrained. Each room should have it's own linen container ----not taken from room to room , or carried down the hall.
Each person should be given there own BP cuff------This is becoming more common.
Each person should be given a new phone----This is also becoming more common.
Shoe covers should be used by in hospital personnel, changed after leaving a room that has a known infection----now only done with serious infections that are in isolation status. Not even required by many hospitals for OR people.
As there are many more hospital acquired infections, a return to things that were done in a previous time are being looked at for control of the spread of hospiatl acquired infections.
Lastly, I believe that all immuno-comprimised patients should be in reverse isolation for our full hospital visit. That's all of us that are receiving chemo or recently received chemo, but are numbers are "UP". Our immune systems are not the same after all the chemicals dumped into us. We need greater protection from what we are exposed too. Numbers being "up" doesn't tell the whole story. This one I can't prove by studies. Wish I could. But been there did that , seen it to often that we are more prone to infections based on our life saving drugs like Tamox and AI's.
Well this chapter is at an end.
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Hope I make sense-------been up all night. I am a nurse and I choose to have a elective bmx based on family hx, during the approval process BC was found. Please , please, seek Whippettmom /Deborahs advice- going through this process. I did not find her untill it was all done except nipples. Deborah can give you advice that most docs have't got a clue about. type , product size/
Not getting her advice ,I ended up with Foobs that are to big for my body size and pain for 3 1/2 years that I believe I didn't have to happen b/c the foobs were to big. Plus, I have to be seriously careful about LE, because the things are to big. I will go and bring her site back to you. Talk to Wippetmom/ Deborah.
http://community.breastcancer.org/topic_post?forum_id=44&id=746448&page=287
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Anyone interested I wrote a new topic thread on constipation------ah the things we share-sheila
http://community.breastcancer.org/forum/6/topic/781867?page=1#post_2830873
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Thank you so very much for this...I am awaiting biopsy results now and am a BIRADS 5.
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Stacie--- there is a BIRADS thread , I hope it helps you. I hope your beliefs help you also H&L&P's sheila
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Wow- I can't believe how helpful that was! I was just diagnosed a few weeks ago. Port goes in tomorrow and Chemo starts Monday. I will definitely get all those binders started. Thank You!!! God Bless.
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I was just diagnosed with Invasive Ductal Carcinoma, on 2/23/12. I had a lumpectomy on 3/1/12, went back today and got the results of that. I am stage II, grade III, 1 out of 10 lymph nodes that they removed had cancer. I am triple negative for the estr/prog/HER2, so I have to have chemotherapy, and radiation. Has anyone else been diagnosed with this?, and how bad is the chemo....please tell me what to excpect.
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Wild flower, Sorry about the news. Please, you can get much info here and support.
First go to the main board --not the discussion board and locate the section on pathology report. BCO has the best that I could find explanation of the different components of a pathology report. It's actually how I found BCO.
Second after reading all that is offered there, come to the discussion boards >>go to main forums>>>scroll down to "connecting with others with like diagnoses". This should get you started. Good luck
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http://community.breastcancer.org/forum/69/topic/721889?page=1#idx_409
KD you are probably done with your port placement, You can use this thread as a reference point. Many people have offered much good information . Best to start from page one. That's the above link. Good Luck
I tested the link it works
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Wildflower, your diagnosis sounds exactly like mine. I'm grade 3, triple neg, and 2cm. Don't know my stage or nodes yet until after Tuesday. That's my lumpectomy date.
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Please anyone coming here this is is a teaching site vs a conversational site. What that means is, wonderful people like yourself will stop by, pick and choose ideas that may work for them. AND hopefully leave ideas that they have come up with , that will help others uncomplicate their lives ------if that's possible-------.
A conversational thread is a place where wonderful BC women and men talk to you, and support you with their writing's. In many, many cases the folks , you connect with on the conversational threads become close friends. Sometimes closer than family. They will soothe you, enrich your spirit, and be with you in good times and bad.
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I made 2 e-mail lists. One for family that wanted to know every detail. The other for close friends, who genuinely wanted to know. I would update every week or two. It gave me a chance to say if I was tired and sleeping a lot or in the mood for company and conversation. Maybe say that you're looking forward to having enough energy to chat. I don't think people realize how tiring it is to go through this.
Another possibility is setting up a Caring Bridge account. My niece did that for her husband, who was gravely ill. People can read the posts and leave supportive comments. She said they would look them up when he was feeling pretty good and she would read the comments to him.
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Wren Thank you both ideas are great.
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Bump----read thead from beginning, has much info from many giving people sheila
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BUMP
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Hi,
Thank you for this list! I must say it is helpful and overwhelming at the same time.
Was diagnosed in Feb 2012 with dcis grade 3. Have had 3 lumpectomies but did not clear margins so am headed towards a nipple delay and then a mastectomy. I had no idea that this was going to mushroom and feel very behind in keeping records and tracking of finances.
A friend just informed me that there is "something" our there that is supposed to help breast cancer patients financially so we don't even need to pay all our co-pays. Has anyone heard of this support?
Also, I feel like I have not had all the time to do all the research that is out there for options. I have a 2 1/2yr old and run a business. Feel so out of balance.
Need help in all areas because now I am also at point of freaking out about mastectomy as date is soon.
thank you in grace.
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