Just diagnosed

Pharmgirl69

Wow this has been a roller coaster ride the last few weeks. Prelim report Monday was DCIS, final report from second pathologist on Wednesday said invasive, Breast surgeon yesterday said IBC. So I guess I am now confirmed IBC stage 3, no lymph node involvement and still waiting for the estrogen, progesterone and HER2 results. Appointment with oncologist next Wednesday and genetic counselor same day as well. I'm going to spend the weekend preparing, I don't know what else I should be doing besides researching and trying to figure this all out. Even though I'm a nurse, this cancer world I found myself thrown into is completely a different medical language I feel like I'm back in nursing school.

I've read the great thread somewhere about what to do to prepare, getting a 3 ring binder, keeping all forms etc. So I'll be working on that this weekend. Is there anything else I should be doing while I wait for Wednesday and my definitive plan?

Kicks

I am so sorry that you have 'joined' our very small group. A HUGE 'cyber' HUG! Us IBCers are here for you - we've all been where you are today. Some recently, some quite a bit ago and others in between.

Keeping and organizing all reports, paperwork (blood work, etc.), EVERYTHING is the way to go. I didn't/don't use a 3 ring binder. I used a small file box. Can find them in most office supply store. They are hard plastic, have hanging file sections (big enough to put usual size paper in without folding), so about 10" x 12" and about 4 to 5 inches deep so not really a 'big file cabinet' but a very light weigh, easily carried 'box' that has a handle in the top. Hope my discription of it makes sense but they are easily found - even in Walmart type stores and not 'pricey'. You will be getting a lot of papers, all of which need to be saved, I now have several bigger file 'tubs' with the years of paperwork I've acquired. Still have my hand carry/little file box that I put all new 'stuff' in and when it's full - transfer the older to the big tubs. I'm glad I did the enclosed small file box with my important papers as I find myself sometimes losing handout papers that I get with my Lakota Language class that I put in sleeves in my notebook.

What works for you is what you should do BUT it is important to keep copies of 'everything' and be sure to get copies.

IBCers aren't many but there are several of here, not just Sisters but also a Brother. You will be hearing.

Georgia1

Oh Pharmgirl, I am so sorry. BC is definitely a roller coaster, with weird ups and downs punctuated by freaky pauses with nothing happening even tho it feels so shocking. I'd add that you can stock up on your favorite foods; figure out recipes you like with lots of protein; think about how much you want to work, if at all; and plan a few fun things to keep your sanity. Let us know when you get more results and we'll think positive thoughts for you.

Traveltext

Sorry you have to go through this Pharmgirl69, but it's all do-able as the IBCers here will attest. When you get a moment (and your test results), update your signature so that we can keep track of you and understand your stats.

Normally chemo is the first treatment for IBC, as this shrinks the tumor and gets the skin inflammation under control. Ask your oncologist for a treatment plan so that you understand what's ahead of you. Do keep us posted along the way and keep the questions coming.

Pharmgirl69

think I'm on good path to getting my paperwork all set. At least as much as I can at this point. Don't have much yet but I'm sure that will change.

I plan on working as much as I am able and I know I'm probably being naive, but I'm hoping one day of chemo every 2-3 weeks won't be that disruptive but I guess only time will tell how I react to chemo.

At this point I'm thinking i will.probably start treatment next week after my Onc appt. Wednesday and setting a date for port etc. I don't want to sound whiney but is there anything anyone has found to help with this uncomfortable feeling in my breast? I can't call it pain but it's really annoying and worse at the end of the day. Did anyone else have that in the beginning? I feel like my breast swells much worse at night

Traveltext

Pharmagirl69, soundslike you have the right attitude to treatment. Modern nausea drugs mean you will most likely be able to continue your work, but just see how you feel. I thought OMG this is going to be bad, but it wasn't. My onc always used to say, don't have any preconceived notions about any stage of treatment. Really good advice.

Your breast feels weird because it is inflammatory and tumorous. Hang in there, lots of us did and we're doing fine years later. Keep us posted.

Pharmgirl69

So I just got a call from the doctor that said I am ER-, PR- and HER2+. Not sure what all that means and what it means to me?

Beatmon

It means you are going to become a good friend of Herceptin....the miracle that changed her2+ from a killer to a treatable form of breast cancer. You will probably get Taxotere or Taxol with the Herceptin and maybe others. There is loads of info on women with Her2+....but much is based on old statistics.

It looked like you posted IBC in your first post...I don’t know the differences in treating her2+ IBC vs IDC. There will be others along with that knowledge.

Do you have someone to take to appointment with you...very stressful trying to remember everything. Some people record on their phone.

Best of luck

ShazzaH

hi all. I am so glad I’ve found you gals! I was diagnosed with IBC on Friday. Don’t know if it’s a IV yet tho - having scans on Monday to find out. And we’re in the middle of making a house move from the U.K. to Spain! We’ve talked until dawn since dx about whether we should cut our losses & stay in UK (with little confidence with the NHS - I first went to the breast clinic in Aug 2017 with symptoms & they said It as only an infection), or should we follow our dream & move to our newly purchased villa in Spain (who have got an excellent reputation for treatment)? Aaaargh - what bloody timing! We should be moving in 5-6 weeks, but they want to start chemo within 2..... Anyone else had experience of starting treatment in one country, then continuing in another? This is stressing me out more than the diagnosis at the mo - we’ve been so excited about our move & retirement to Spain, & everything has just crashed around us. I can’t sleep & feel so angry that this could have been picked up over 6 months ago, giving me a better chance. Thank you for listening. Shaz

Moderators

Hi Shaz-

Goodness, that's a lot to process! We're sorry you find yourself here. Have you considered reaching out to a doctor or two in Spain, and seeing about facilitating treatment ahead of your move? Is it possible to travel to Spain to begin treatment until you move permanently? The timing is just awful, we're terribly sorry you have to deal with this on top of your diagnosis! We would definitely suggest researching a few providers in Spain (as you'll need them anyway), and then asking for second and even third opinions on when you should begin treatment. The more information, the better. Please keep us posted!

The Mods

Crich2

Pharmgirl, I am sorry you're here, but I swear I've learned more from fellow pts then from my Dr! So it's good you've found the site.

As to the discomfort, after some trial and error I have gone with wearing a bra 24/7. My Surgeon said it would help with the swelling from all of the lymph fluid and it does, but my underwires were a little uncomfortable to wear for so long. So I went on Amazon (seriously) and ordered a couple soft, non-underwire bras from Bali. They help a great deal. Nothing has gotten the fluid out, but the softer bras have enough support to keep from having it all dragging on your breast, swelling and feeling so heavy. Good luck!