just diagnosed with IBC

pinker

Well.. it's official. The biopsy results are in IBC. Does anyone know what the best chemo treatment is? I'm about 1.5 hr from boston .. do i need to go to a special place like Dana Farber? of course .. the most important .. will i be able to work during chemo? I'm a consultant and they said they're ok letting me work from home. I'm really worried as I pay most of the bills.

Any input would greatly be appreciated. I'm scared shitless. My husband is wreck.

LisaMomOfFour

You are at the worst time right now, just anticipating everything and imagining the worst.   Once you have your treatment plan you'll feel better.  Like you, working is necessary for me, not optional.  I worked pretty much full time through chemo, part of it from home.  Toward the end of chemo I did have to take a couple of days off per cycle because of bone pain.  All in all, I took a total of 8 days for treatment, and 8 days because I wasn't feeling well enough to work.  That's over the course of 4 months.  

I live about one hour outside of Chicago... I chose to do chemo closer to home...  but did seek out a second opinion, which confirmed the chemo recommendation from my oncologist.  

Hang in there, of course you are scared, it's only natural.   

misswim

You should absolutley be going to somewhere like Dana or MGH. You need an onc well versed in IBC. PM me and I can get you the direct number for the breast program coordinator. I am doing my IDC treatment close to home but all follow up at DFCI. It is first rate and has access to innumerable clinical trials.

ebann

I had IBC too. I would make sure you go to the best. IBC is not something you want to mess with. You need to be treated ASAP. It is treatable and it is scary. You have every right to feel the way you do. It is not an easy thing to handle.  There are a lot of survivors that have had IBC. I am sorry that you are having to deal with this. I did several different chemo's. I did Taxolere/Cisplatin then I did  Aridmycin/Cytoxan then I did Taxol/Carboplatin. After 12 months of this and this included my MX  I was considered NED (no evidence of disease). So it does happen. Have you found out if you are ER - + PR - + HER2 - +? This will let the Dr.'s know how to better treat  you. My cancer unfortunatly has returned. I still have hope and know I will beat this cancer. Fight and fight do not give up. It is not a death sentence. If you want to PM me and discuss it some more I am happy to correspond with you.

Many  Blessings

ibcmets

Pinker,

You'll get through this.  The unknown is more scary than the treatments & tests.  I was horrified of chemo since so many of my relatives died of lung cancer.  Chemo will be your first treatment as they need to be very aggressive with this.  I had cytoxin, taxotere & adriamyacin every 3 weeks for 8 months.  After chemo I'm on daily Femara & Lupron monthly to suppress ovulation.  I have a great onc who ran all tests, Pet scan, bone scan, MRI, biopsy to confirm diagnosis accurately.  I'm ER/PR+, her2-.  Your hormonal status may dictate what chemo you will have.  I had heavy chemo and was exhausted but did not feel pain or get nauseous. 

The treatment is doable.  A year of stability allowed me to have a bi-lateral mastectomy.  That for me was harder & much more painful than the chemo because I chose to do reconstruction at the same time.  2 years later, I'm doing well and you will too. 

There's so much info here.  Choose the topic you're interested in finding out about and many people will reply to answer your questions.

You can do this.  You sound like you have great support.

Terri

Laura_Jean

So sorry to hear about your diagnosis. It is very scary especially at the beginning.

It is very important that you find a doctor who is experienced at treating IBC as treatment differs from other forms of breast cancer. In particular, with IBC you will get chemo first, and then surgery - with other breast cancers surgery may come before chemo. Also, the chemo with IBC tends to be more aggressive and longer than with other forms of BC. 

I had 12 weeks of Taxol followed by 4 cycles of FEC three weeks apart. Then surgery removing my right breast and all the lymph nodes on that side, now doing radiation along with an oral chemo drug Xeloda. All in all it's been about 9 months of treatment so far. It's been hard at times but it's been doable. I was able to work through most of my chemo.

A great site for more support and information is www.ibcsupport.org.

Wishing you the best, 

Laura Jean 

BeverlyMom

So sorry to hear your news. I was just diagnosed with IBC in Boston on Sept 2 and started chemo at Harvard Vanguard (affiliated with Dana Farber & Beth Israel) on Friday. I live about 25 miles outside of Boston and am going into the city for my treatments (I work 3 days/week in Boston and watch my kids 2 days, but am the "breadwinner" in my family still so am going to need to work as well).

My treatments are every other week starting with 4 cycles of  cytoxin & adriamyacin followed by 4 cyles of taxol & herceptin (I'm HER2+). I went w/ Harvard just because that's where my doctor was but she referred me to Dixie Millis who is a nationally renouned surgeon and expert in breast health. Also, I was worried that switching doctors/teams would take time that I just didn't want to waste.

Given we are going through this near each other and around the same time, feel free to private message me if you want to chat more.

anonymice

Of course you're scared shitless, but it will get better, and soon.  I was diagnosed a year ago this week, and was declared cancer-free in May.  

I'm also a consultant who works from home.  It is challenging but you can do it.  I worked through chemo, mastectomy (except for a week of course), and radiation.

 You can do this.  This is not a death sentence.  We are the first generation of people who are actually living after being dx'd with IBC.

Most important is that you have chemo FIRST.  Neoadjuvant chemo.  Any doctor that suggests any surgery other than biopsy before chemo is not the doctor for you.  

Hugs and more hugs,

Pam 

 

Claudia413

Sorry you had to join such an exclusive club (IBC), but I've heard wonderful things about Dr. Beth Overmoyer at Dana Farber. I have two IBC sisters who go to her for their treatment. Good luck and let us know how you're doing during your treatment.

MissPenny2008

In 2 months, I will have survived IBC stage IV 2 years.  Most of the crying was done during the waiting period of tests. It took only 14 days from diagnosis to first chemo.  I didnt' have time to think about it, I just went through the motions. My daughter, 16 at the time, said "Our lives will never be the same again."  She was right.  I was HER2+ and my dr. and I firmly believe it was the Avastin and Herceptin that saved me.  Work can be a wonderful thing but you may want to accept the fact that full time may be an impossibility.  My chemos caused 'inflammation'-I lost my voice for 4 months and my hands swelled to deformity with a burning sensation.  6 months of chemo and then a bilateral mastectomy left me extremely weak.  2-3 months into the tx I felt like death.  But, I'm alive.  You have every right to be scared shitless but also BE BRAVE.  I had a dr. tell me that 5-6 years ago my diagnosis would have been a death sentence so there is a lot of new treatment options.  Get the best care you can.  My dr.'s office was open 7 days a week and he gave me his cell phone number.  Good luck and please let us know how you are doing. 

Nicki13

Thank you all for these beautiful posts!!! This week my mom was diagnosed with IBC. We do not k ow the stage or if its spread. I have literally been crying since monday. Reading all of your beautiful survivor stories has been amazing!!! Tonight for the first time in days i may be able to fall asleep remember these amazing words you all wrote. Thank you so much for sharing your stories. I will be back quite a bit to get some advice and support along this journey we are starting with mom. Does anyone have any words of wisdom on how , as a daughter, ican help her get thru this? She starts chemo next week for 6 months then surgery and then radiation. What can we expect from this chemo. Any advice would be greatly appreciated. I pray u all stay cancer free or rid it from your body if yur like us and just starting this journey. God bless!!

emilie

GO TO DANA FARBER! My mom has triple neg. IBC and treks over an hour to get there. Totally worth it. The facility, staff, support, are amazing, right down to the guy who passes out blankets during chemo. She previously was going to a hospital affiliated with Dana Farber, but when her diagnosis became more complicated they decided to send her to Dana Farber in Boston, and I am so much more confident there than at the previous hospital.

Nel138281

Pinker,

I was dx at the begining of October, I live So of Boston by about 45 minutes if there  is no traffic!   I made the decision to go to Faulkner/Dana Farber in Boston.  They have a great breast care center and all the connections of Dana Farber.  I feel much more confident being out of the local hospital.  I think the oncologist there was more frightened than me cuz he doesn't see much of IBC in the burbs due to frequecy and folks heading to the major centers.  My recommendation, if you have not already done it, go to one of the hospitals in Boston.  The commute is a pain, but I would rather have treatment where they know the best.

Be well

Nel