Biopsy results today...

IrishEyes39

Randi, I am in Orlando and have been very happy with my treatment and doctors at UF Cancer Center. It used to be MD Anderson and that is where many of the docs are from. See if you can transfer your care there. Also, I am very near the hospital and am willing to be a hotel on occasion.

Praline

Randi I have not started chemo yet. Decision for chemo was just made last week. I am waiting for MO to get back to me with appointments and get the ball rolling.

Logan Sending hugs, prayers, and positive thoughts.

CBG

I was treated at UPenn Hospital (Abramson Cancer Center) - very good. But I know people who went to Cancer Centers of American and loved it - perhaps there is one in Florida or closer to you? Breast cancer (at least IDC) isn't a complicated cancer and has standard protocols. It is important that whomever you chose is accredited for breast cancer treatment and are using standard protocols. Coordinating all the players (MO, RO, surgeon, plastic surgeion, etc.) is important too - so you want a place where they have a coordinator. All the best too you - so glad your lymph nodes were negative!!

Randi1035

Thank you ALL for these GREAT referrals.

I contacted Sloan Kettering in NY since I am a New Yorker (relocated to Flori-DUH) They have been responsive, and very helpful in tracking down all the flims/CDs, pathology and reports.)

I am scheduled for a "consult" on Feb 17 in NY. Hopefully I can be scheduled for surgery immediately following, since all tests will be completed, BIOPSY/PATH/MAMMO/US/MRI/CT.

I planned to stay in NY for a week to make this happen. I chose Feb 17th because I am scheduled for an MRI/Chest CT next Wednesday HERE IN FLORIDUH, (the soonest they could get me in. They blame INSURANCE, but it's a PPO and no referrals are required.)

Can't wait to get out of here and get this show on the road!!

Side note on the Clown Car at JFK HOSPITAL here in FL - Surgeon at Sloan called JFK in FL to get the pathology slides sent to his office in NY. I released them to JFK before the consult. They must have been pretending to have the slides at the consult as well as the Essay re: PR, ER, HER2 status. because THEY could NOT find the slides or the Path report when I asked for them but at the consult they said they had both. I asked them to check again. The path lab at JFK said, "No slides just your bloodwork." That was interesting because no one has drawn blood. Later this morning, JFK hospital said, "That blood work is from 2011."

Tracked down my slides - Still at the ORIGINAL pathology lab 30 miles away from JFK. Called them. Path lab in FL is Fed-Ex'g them to Sloan in NY.

IF I felt sick (which I don't at this early stage) I don't know HOW I'd be able to do all this?

Thank you all for your help. You keep me motivated to be my own Navigator/Advocate.

marijen

I wouldn't call INVASIVE cancer entry level. Run, don't walk, to a better cancer center!

advwright

Hi Everyone,

I have been reading these posts for the last week or so. Sorry for stalking! I never posted anything before, but decided to jump right in. I was just diagnosed yesterday with IDC. I am 45. For the most part, I am trying to stay positive. My breast surgion is wonderful. My husband and I really like her. I think the hardest part was having to tell my kids, age 15 and 12. My mother was diagnosed with breast cancer 19 years ago (she was 49) and she is still going strong. So, I am using her as an example that I can beat this. Luckily, because of my family history, I was always really good about getting mammograms, so my doctor says it looks like it was caught early.

I think having a forum like this is great! Except for my mother, no one else I know can really understand what this is like. My mother has been a rock! My sisters told me she is more worried than she is letting on, but to me she is acting very positive which helps. I seem to be doing OK for the most part and then all of a sudden I feel some tears.

Well, thanks for listening. You show such support for one another. It is absolutely wonderful.

Angela

Randi1035

Irish Eyes you are so incredibly kind and sweet! I am going to New York (Sloan Kettering) Feb 17. Let's hope I don't have to wait too long after that. IF I do, I will look into UF in Orlando.

CT and MRI Wednesday. I know there is very little chance that it spread but...I am terrified of lung cancer. Terrified. After I get the results of these two tests, I'm sure I'll be fine and ready to "fight like a girl!" (Fierce)

Thanks again and again. I come here often just so I know I'm in good company with women who know what this feels like.

((((Hugs))) and much love and respect to all of you!

Randi

Randi1035

Angela...so sorry you had to join us, but I found wonderful advice and support here. I was just diagnosed last week.

I'm so glad to hear you were on top of it. So far it's been a bit difficult and frustrating, but I think because we both caught it early we will do fine! Try to find a coordinated care situation where the surgeon/oncologist/radiologist etc are all under one roof and sharing their information.

Get copies of EVERYTHING, reports, slides, sonograms, ultrasounds, mammograms (the disks)

Ask a lot of questions...for instance What size, grade, PR, ER, HER2, what is the timeline for treatment?

Everyone's advice and support here has been invaluable.

(((Hugs)))

Logang

Welcome Angela! Sorry to hear about your diagnosis! I have a very thick family history of breast cancer and lost my mother when she was 34 and I was 2. I started getting annual mammograms several years ago and was a ball of nerves every year until the results came in. I had my last annual in May 2015 and got an all clear. I found a lump in December that ended up being 3.5cm at surgery time! It makes me question whether my mammogram truly was clear back in May. I find comfort in knowing that there has been so many advancements in medical technology and cancer treatment. My mom had her treatment in the early 70s. I am playing the waiting game once again as we await my oncotype dx test results. I follow up with my surgeon this coming Tuesday. Keep your fingers crossed that I get my remaining 2 drains removed!

advwright

Randi,

Thank you so much for responding. Also, thank you for the good advice. My husband and I began writing down some questions we want to ask in a notebook last night. My husband has been making copies of everything and started a folder. I will be having my genetic testing done on Monday and then my MRI will be in about a week. I just look forward to having a plan in place.

I am so sorry about your diagnosis. This is very frustrating and scary. I have read how some women thought they caught it early, but then after more testing or surgery, realized that it had spread. It makes me a little nervous, but I am trying not to think about it. I am trying to not show any worry to my family. My husband is catering to me all over the place. I keep trying to tell him I don't feel sick. Life can go on like normal, or as normal as it can be right now. I guess maybe I should just be enjoying it. This attention and help won't last forever. It crossed my mind that I am in a little bit of denial.

I am wishing you all the best. Please keep me posted on your treatment.

ChiSandy

Keep a notebook. Throughout your treatment you will be buried in documents: appointment reminders, insurance stuff, correspondence, after-visit summaries, informational handouts, resource lists, prescriptions (photocopy them if you can't fill them by fax), and receipts. There are two ways to do this. My friend who was recently diagnosed keeps looseleaf notebooks filled with plastic page protectors into which she slips paperwork, etc. (She's done this with photos from vacations, certificates & keepsakes too). When my mom began her final illness (COPD+CHF) while on vacation in VA, my sister kept just such a notebook and my mom handed it off to me when I met her at the airport in FL to bring her home. She kept it up through her last night on earth, at 85-1/2.

What I do is a tad different. Rather than ring binders, I've been a longtime fan of the Levenger Circa system (Staples has an identical and interchangeable but far cheaper system--which you don't have to order online if you have a Staples near you--called Arc). It fundamentally consists of specially-punched paper (you can buy an inexpensive Circa/Arc punch for any documents you get), interchangeable covers (plastic, paper, even leather or pleather), and plastic disks of various diameters which act as rings. You can add dividers (plain and pocketed), rulers, smaller notes, even a little zippered pouch, which I use for parking receipts and discount coupons. The beauty of this system is that with one set of covers, dividers and 2" rings you can assemble a master notebook; with another set of covers and smaller rings you can assemble a smaller subnotebook you can take with you to various appointments--all you have to do is remove that section from the master notebook simply by pulling it off the larger disks and pressing it onto the smaller ones. No opening or closing rings (no pinched fingers); the notebook folds completely and needn't be opened flat--no need to move sections around to have enough space to insert stuff. And if you exceed the capacity of the master notebook, just start another. I made a "Radiation" notebook--by removing that section and putting it on 1/2" rings and between a set of covers--I brought to visits with my RO, simulations, and treatments. Afterwards, I put it back into the master notebook. The other day I removed the "Oncology" section, put into a 1/2" notebook, and took it to my MO appt. Hadn't expected to get lymphedema, but I'm creating a "LE" section for the exercise and treatment handouts to take with me to my LE PT. Each section has some blank sheets of lined paper for taking notes and logging symptoms, etc. In the front of the master notebook is my journal.

Sounds anal-retentive? Of course. But it also keeps my hands occupied and my mind focused on my progress rather than in panicked "What next?" and "What if?" mode. And of course, you know where EVERYTHING is when you need it, especially at tax or reimbursement time.

advwright

Hi Logang,

Thank you for your response. I am so sorry your mother passed at such an early age. I can somewhat understand how that feels. My father was 39 when he passed away. It was a massive heart attack. I was 12 and my sisters were 7 and 3 months old. It isn't easy growing up with one parent. I have always been concerned about heart disease, actually more than breast cancer even though my mother had it, but so far, except for mitral-valve prolapse, which only requires an antibiotic before the dentist, I seem to be in good shape.

I am so sorry the mammogram did not pick up your cancer. Mammos, unfortunately, are not 100% accurate. The same thing happened to my mother. She had breast cancer in the mid-90s. The mammo came back all clear, and then about 9 months later she found a huge lump. By the time it was found, she was late in stage II. She had a radical mastectomy including 40 lymph nodes removed (luckily all clear), chemo, and then radiation. I am not sure if they take out 40 lymph nodes anymore. 19 years later she is still going strong without a recurrence. I am sure treatments are even better and much more advanced than 20 years ago.

Fingers crossed for Tuesday. I hope the drains can be removed. Good luck and keep me posted.

advwright

Thank you so much for your great advice. There is a lot more stuff to keep on hand than I realized. I'll be going to Staples to get the Arc this week. It is better to be organized and have everything right at your fingertips than to constantly search for what you need. Thanks again for taking the time.

Logang

Thank you advwright!