Just Diagnosed With IBC, need advice

bride

The day before Thanksgiving, 11/26/13, I had a mammogram and an ultrasound because my GP insisted -- thankfully. Although the breast center said they weren't doing any biopsies that day, I was told it looked like I had IBC and would I please go home and have lunch and then return for a biopsy? Needless to say, I skipped lunch. Had a needle biopsy done on 2 masses: one was under an inch, the other was about 3/4 of an inch. Also, one lymph node was enlarged. Finally, on the following Monday, IBC was confirmed. I live in a small town, nobody had experience with IBC. Through the efforts of a friend whose is a dr at UCSF, I've got an appointment this Wed with the team directed by Ruth O'Reagan, whose supposed to be really good.

I did all that by rote. In reality, I'm freaked out. What happens next? What questions do I ask? I've read a bunch or articles and am mostly just scared confused. Any words of wisdom, experience, etc. would be helpful.

Nel138281

bride ,

Good for you for getting to a larger center right away. You can do this. It will be a long haul, but there is much support and information on these boards. Typical treatment is chemo, mastectomy surgery, chemo, radiation. The chemos are more tolerable, at least in most cases, because of all the advancements over the years. There are many woman on these boards living full and active lives years out from IBC. Bring at least one someone to the appointment with you, take notes and then know you can always go back and ask more questions. There are IBC threads on these boards as well. Just my beginning thoughts. I am sure many others will offer far more specific information. Stay in touch, let us know how it goes on Wednesday and know you can ask anything here.

Be well

Nel

edwards750

You are blessed  your GP did insist. I have IDC but my sister was dx a year ago with IBC. I don't know a lot about it except what she shares but apparently it is a cancer that is hard to spot because it travels a lot. Also my sister has dense breasts. Just so you know my sister didn't have chemo or RADS and is currently taking Arimidex. She does have frequent scans which is always scary for her but so far, so good. She has a really good Oncologist in Atlanta who told her from the front end it wasn't her intent to chop off her breasts or subject her to chemo just as SOP. She is doing fine. Good luck and keep us posted. diane

ibcmets

Bride,

Sorry to hear of your diagnosis. With the biopsy, your medical team will find out hormonal status; estrogen, progesterone & herceptin. This status will determine what type of chemo will be more successful for you. With ibc, chemo is always first before surgery. You'll have more tests in the next weeks ahead to determine what exactly you are dealing with, whether it's local or invasive. I wish you the best on your treatments. Please come back and ask any questions you need.

Terri

Kicks

Get copies of ALL reports and put them in a file - even just blood draws.  Get a notebook (I like a steno pad), keep it somewhat handy so anytime you think of something you want to ask write it down.  I always left a space between each question so I could write the answer down right with the question.  A second set of 'ears' (depending on where that person 'is') can be helpful.  Listen to what the Dr actually says - not to what you 'want' to or think you will hear.  If you are not absolutely sure you understand, get him/her explain in other words til you do understand.

Because IBC is so aggressive and forms in 'nests' or 'bands', chemo is the first line of attack.  Most say they did 2 different 'batches' of chemo followed by surgery and then rads.  I did chemo (A/C), surgery, chemo (Taxol), rads.  I was told that recon was not an option for at least a year.  

There will be a lot of scans and tests.  Not everyone has all the same - we are each unique so there is 'no one size fits all' list.   Our Drs are also different - all do not think exactly the same all the time or with each of us.  Be prepared for a 'whirlwind'.  For me, my biopsies were Thurs, DX Fri and started chemo 2 weeks 5 days after DX.  I've seen others that said they were quicker into TX.  

Remember - we are each unique!  Take in all info anyone gives you but also remember that 'everything' any of us has been through you will not necessarily experience.

Anonymous

Hi Bride, I'm a 10 year survivor of triple negative IBC so don't lose hope.  It is possible to survive many many years with IBC.  The next year will be a hard journey but you can do this.  

Alwayshope

bride

Thank you all for your calming words. On Wed, the 18th, I spent over 8 hours at the breast center with good docs that I had lucked into. Here's my first update.

I am triple positive for hormonal treatment, although my new center wants to get my biopsy slides to do further testing. I have two grade 1-2 masses in my breast and one grade1-2 mass in a lymph node. I also have some bits of abnormal tissue floating about. My first chemo is set for Dec 27 and will include Taxotere, Herceptin, and Pertuzmab. I've already had a physical and a cardiac echogram. Today I'll be petscanned from head to thigh. Then a breast MRI. Obviously need to have my shunt implanted. Doc has tentatively suggested three rounds of chemo -- one every three weeks, then surgery (have surgical consult next week). Of course this all is dependent on my small town's pathology report being correct and on how I respond to the chemo. My doc says I'm stage IIIB. So the fight is on.

I've read here somewhere that glycerin was good protection for my cuticles. Does anyone have any thoughts on brand or where to find the stuff? 

Besides keeping a copy of every paper that comes within 20 feet of me, is there anything else I should be doing?

God, how I wish this not so uncertain. You know, the fantasy of if I do all the pre and post surgery chemo and all the radiation and take Herceptin forever, I'll be okay. I'll  try to explain that a bit more but right now I'm off to be pet scanned.

Anonymous

Take a deep breath and breathe!  When you are first diagnosed, it is chaos with stuff being flung at you at the speed of light.  It will settle down and you will settle into a 'routine'.  

Join one of the chemo threads in the Chemotherapy forum to find a group you can travel the journey with.  They will be your support lifeline.

Don't feel guilty for taking time to 'vent'.  Life has dealt you a load of crap.  It is NORMAL to grieve, be angry, discouraged, afraidl.  Life will never be the same for you but it can still be a good life.

Refuse to listen to all your so-called friends who want to share their 'hairdresser's sisters' cousin's husbands sisters experience with breast cancer' stories.  Your experience is unique to YOU.

People will say stupid ignorant things to you thinking it will be helpful.  Just smile and say 'thank you for your well wishes' they don't know what to say or do and feel awkward.  I found that people took their queue from me on how to handle by breast cancer.  I worked full time through treatment and I made it a point to make sure I didn't make my coworkers uncomfortable.  People feel bad for you and just don't know what to say or how to act.  Cut them a small break and forgive.  Forgiveness is for you not them.

If you need help with depression during this time, get help if you need some antidepressants.  Don't let depression, which is normal for this, to rob you of joy.  Yes, there can still be joy during this time.

Be kind to yourself.

Shave your head when your hair starts to fall out or it will clog your shower drain.    I had a 'Come Shave My Head' pizza party.  Losing my hair was harder than having the mastectomy.  Nothing says 'cancer girl' like a bald head.  It sucks but this too will pass.  Find some cool scarves or a good wig.  Don't scrimp on money when it comes to the wig.

DON'T make any huge financial decisions for a while.  I'm so glad I didn't cash out my IRA's when diagnosed or run up my credit cards. 

Mostly, ^{HANG ON TO HOPE!}

sbelizabeth

Bride, these early days of diagnosis are pure hell for everyone.  They are fraught with fear, foreboding, anger, despair, sadness, and confusion.  Some suffer more than others, but for me, what really helped was to grab BC by the biggest handle available and gird my loins for a fight.  

Like Kicks, I started a big 3-ring binder with sections labeled "pathology reports," "labs," "surgery reports," "chemo," "rads," and any other heading I needed.  I was, and still am, crazy OCD about collecting everything and filing it in my binder. I even took photos of my breast before anyone even biopsied it, and then throughout the processes of chemo, surgeries, radiation, reconstruction.  My binder has been tremendously helpful.

At the end of your last post, you mentioned what essentially was you "bargaining" to assure your healthy future.  It's a stage of grief, and a breast cancer diagnosis means we grieve the loss of our healthy selves.  When I was out for a walk one day, early on, I found myself picking up stranded earthworms and putting them back in the soil, thinking somewhere in the back of my mind, "maybe if I save these earthworms, I'll survive cancer."  

One last thing...stay off Dr. Google as much as you possibly can.  Reading all the outdated stats and gloom/doom stuff you'll find there is just bad for the soul.  

The jury's still out (two years later!) on whether or not I had clinical IBC, instead of just weirdly aggressive IDC.  None months after my diagnosis, my sister was diagnosed with triple positive IBC.  Her last herceptin dose is December 27, and after a few months, she'll start looking at reconstruction options. She's doing great.

Blessings from us as you move forward in this rodeo!

bride

Thanks Bon and to everyone else as well.

I feel like I've had a hands-on crash course in IBC. I've had a PET CT, cardiac echogram, some labs, and a port placed. Plus I've learned how being triple positive dictates my chemo; that I'm lucky only 1 lymph node is involved; and that having my first chemo 2 days after Christmas really messes up the holiday. 

Still now that lots of things are happening, I'm actually less depressed. Still nervous about chemo and what that will bring, but I suspect I'll handle it. The chemo threads have been helpful, but the IBC forum is more comfortable for me. I'm not sure why, I think it is the wide differences in types of cancers in the chemo threads confuses me.

sbelizabeth

Bride, I had my first chemo on December 15, 2011, and you're right...it really made Christmas something different.  Completely doable, though--we had family and friends here for dinner and I was fine.

I know what you mean about the depression lifting a bit once you have a plan.  It's like...time to get over this big ol' speed bump.  

CONGRATULATIONS on your PET and lymph node status!  Your physicians were brilliant and caught it quick!  What a blessing!

You are girding your loins for this marathon, but it has a finish line, and it sounds like you're ready to take it on.  (((HUG)))

bride

(((HUG))) back at ya, sbelizabeth! I'm working on the assumption that I can do this and come out healthy and wiser.

Tis a pity you're on the other coast, I'd enjoy a nice ride -- well if it were warmer than 37 degrees!

sbelizabeth

I looked up your breast specialist, Dr. O'Regan, and she's at Emory--so if you're in Georgia, we'll have to meet in Kansas for a ride, and we'll have no hills to do!  And it's probably colder in Kansas than Georgia, and definitely colder than California.  It's currently 63 degrees, and the hubs and I will go out for a ride after breakfast.

Interesting that my sister's LAST herceptin for her triple-positive IBC will be December 27, the day of your FIRST chemo for the same "brand" of BC.  She's doing very, very well, as am I.  And so will you.

Faith316

Bride,

It's not so bad as you are probably envisioning right now.  I am 5 years out from my initial dx.  (A little of my history is in my signature line below.)  I am doing fine and NED (no evidence of disease) after having had DCIS and IDC and then IBC while still in treatment for the first two.   Chemo, though no picnic, is not so bad.  I have been on 6 different drugs through the past few years (still on Tykerb -- for 4 years of it so far) and have never once vomited.  I certainly didn't feel great every single day, but never felt super sick like I assumed I would.  Ask about an anti-nausea drug called Emend.  It is wonderful and really helps most women who take it.

When you are first diagnosed, it is all you can think about and you always assume the worst.  In time, life gets back to normal, albeit a "new normal" and you don't spend 24/7 thinking about it.  Lean on your 'sisters' here on BCO as we all help each other get through this.  Good luck to you!

Anonymous

hi Bride.  Here's hoping you had a great Christmas in spite of your diagnosis.  

Of course you should keep posting in this forum!  I'm sorry if my suggestion was misunderstood.  It was only so that you could follow along with others doing chemo same as you and benefit from their tips for dealing.  It's not an either/or type of thing.  You can post in BOTH places!  We are always here for you.  

Hugs, Alwayshope

bride

sbelizabeth,

My partner and I both think riding on the flat is all either of us could manage right now -- between Christmas with the 4 year old granddaughter and dealing with my cancer, we're just worn out. But perhaps someday...

Your post made me laugh: all I could think was "but I'm not in Kansas anymore."  I surely needed that laugh!

bride

bride

Morning AlwaysHope,

Actually, I did find lots of very good information in the the chemo threads and appreciate you pointing me to them. I think my reaction is based on two things. I'm still trying to get my head around waking up one day with IBC, something I had never ever heard of. And then just keeping up with all the medical stuff has been like living in a whirlwind -- I haven't had space for my emotions to catch up. I know having any type of breast cancer sucks and am not belittling that in any manner but reading posts from those with a Dx of Stage IA released a boatload of anger and self-pity. It's those emotions I feel safer expressing in this particular forum.

Hugs, bride

bride

Faith316,

Wow, you're history is amazing!

All I can say is thank you. You've certainly strengthened my faith (ouch, bad pun, sorry).

bride, off for a breast MRI and then my first scary chemo

Molly13

Hi,

There is a really great, supportive facebook group for us IBC girls. It's only for Ibc patients and is very informative. Go to inflammatorybreastcancer(IBC)support on facebook and request to join! It's better to be with a group that is specific to IBC.

M.

Kicks

I did DD A/C neoadjuvant and it wasn't bad at all.  Did 12 weekly Taxol adjuvant and it was NASTY!  We're all so different! 

ChelseaAshley

Hi Ladies,

My mom just got over having ILC. Her last radiation date was October 31st and we are thrilled to have this behind us. However, last week my mom had a breast exam with her Oncologist and he said everything felt fine and not to worry. Literally the next day after the physical exam her breast swelled. I called her Oncologist and he said he thinks it is just fluid retention but ordered a mammo for a few weeks away.

My new concern is that she is having the following symptoms:

-Breast swelling

-Her pores are way open, like the way an orange looks

-Her breast has darkened on one side

-It's warm when you touch it

-Breast pain and the breast is VERY firm in one area

I'm posting in the IBC section because when I was looking up the symptoms, everything points to IBC. She did 3 rounds of Cytoxan and Taxotere, 33 rounds of radiation and is currently on Tamoxifen for ILC. It is her affected breast that has shown these signs.

I called her Dr today but he won't be in until Monday. Should I worry? I'm not prepared for this to happen again. I love my mom so much and now I feel hysterical.

Any advice? Thanks ladies!

ChelseaAshley

Bon,

Thank you. I called her oncologist today but he won't be in until Monday. My mom had a hair client come today, who is a nurse and she said that she is concerned and would get it checked immediately. Is waiting until Monday too long? She only has Medicaid and we're really limited to healthcare providers unless she goes to the ER. I'm certainly not going to wait if it is her life.

No one has mentioned they suspected IBC but me because I researched the possibilities. They're just VERY similar to IBC. I can't imagine how she could get IBC after JUST having all the treatment for ILC.

Anyhow, I will be 100% proactive and if her oncologist isn't the same, I will request the other oncologist in the clinic. I will also look into MD Anderson for sure!

Anonymous

If she just had a  lumpectomy, it could be a seroma brought on by the radiation.  

ChelseaAshley

AlwaysHope,

Her last lumpectomy was 4/26/2013. She then started radiation September 13th and finished on October 31st. What was interesting was that it appeared right after he did the exam. When I last spoke to her doctor, he said that he could have irritated something while doing the exam and she has fluid build-up. After her 2nd lumpectomy, she had a hematoma and had to have it removed surgically. It was the size of a coke can.

I'm just hoping and praying it is just a seroma! We can definitely handle that.

Faith316

Not to scare you and I hope it is not IBC.  But, your statement really caught my eye.

     "I can't imagine how she could get IBC after JUST having all the treatment for ILC."

I personally was STILL IN TREATMENT for my initial dx of IDC and DCIS when I was dx with IBC.  ( A little of my history in my signature below.)

bride

hi all,

I'll try to catch up as I can.  My first chemo (12/27/13), really knocked me flat. I had two types of anti-vomiting meds: these, of course meant I never felt even a twinge of nausea. OTOH, I was told that acetaminophen would suffice for any joint pain and that I didn't need an anti- diarrhea med at at all. In translation, that meant that I spent the next 3 days wondering just why gremlins had decided to drive stakes through every joint (including some I didn't know I had), in my legs and feet. And 10 days wondering if I would be held personally responsible for destroying every tree on the planet to make T.P.

Then, suddenly, I was was fine save for some mouth sores. I would've preferred to lose my hair.

Today I had consults with the surgeon and the radiologist. Both we as pleased as I am about the significant improvement in my breast. 

But now I am sorely  confused. The surgeon wants to do autologous breast reconstruction as soon as possible. From my other docs and my own reading, reconstruction is not part the the normal regime with IBC. When I suggested a bi-lateral mastectomy, she told me no, that "your breasts are separate compartments." Well, they aren't bulletproof -- otherwise why would my lymph nodes (1 is certainly cancerous but my breast MRI suggests that 2 more might be suspect) be involved? 

I guess my thinking is that a mess of variables set off the IBC and I'll still have that set of variables, so doesn't logic dictate a bi- lateral? My radiologist doesn't want a skin expander and seemed unhappy with the surgeon's thinking. I'm not sure how to handle this -- I'm not comfortable with her emphasis on making sure I have breasts. I'd rather have no breasts and fewer worries. How do I deal with this? It'd be a lot easier if my surgeon wasn't the top dog, but she is. Advice? Please?

bride

bride

Chelsea/Ashley,

My IBC appeared literally overnight. After just one chemo session, I have no outward signs of having IBC. And only the most thorough exam indicates a tiny tender spot on a lymph node. Please have your mom checked out completely as soon as possible. I personally don't think that I'd put much emphasis on the timing between the exam and her symptoms. During my first physical exam my (now ex) doc missed both a mass that was 2.5 x 3.3 and my lymph node mass. The lymph node mass wasn't even clear to him until he did an ultrasound!

I pray it is not IBC, but waiting weeks to find out is not right. Your state Medicaid office will have a list of labs/providers/hospitals -- just be prepared to be on the phone, on hold, for a while. Nobody should have to go through weeks of worry.

bride

sbelizabeth

Bride--I PM'd you.

bride

But sbelizabeth, am I back in Kansas?

bride

sbelizabeth

Hahahaha...no, still planted in Georgia, as far as I know!  Check your private messages!

bride

sbelizabeth, check your own. <grin>

b