Officially diagnosed with IBC

yuyueno

Officially diagnosed with IBC

yuyueno

Hi, everyone!

I posted here about having a strong feeling about me having IBC before.  I was diagnosed with breast cancer last week.  And, today, a second opinion doctor confirmed that I have a beginning stage of IBC, which puts me automatically in Stage 3 category.

Next 5months, I will be on Chemotherapy.  Then, I will have double mastectomy and another 7months of Chemo.  I feel like I am ready to fight.  But, everytime I hear about the prognosis of IBC, I feel so scared. The number is scary.  How do you all deal with it? 

Anonymous

I was diagnosed on Wednesday, and am just coming to grips with the scary numbers. One way I look at it is that someone has to be in the group with no reoccurrence after 5 years. I am going to do everything in my power to be part of that group. 

The main thing that helps, honestly, is that I have faith n God, and know that he has the power to use this for something good in my life. So I pray a lot. That especially helps when I am up worrying at 2 in the morning like i am now. I am not in control of this situation, but my creator is, and knowing that gives me peace.

Bette 

yuyueno

Hi, Bette

I am also trying to see things a glass half full instead of half empty.  You're right,there are people with IBC making over 5 yrs.  I also want to do everything I can do to be in that group.  One encouraging thing my surgeon told me was that in his practice and recent reseach he is exposed to, he believes that prognosis with stage 3 IBC is much higher, around 80% range. It made me feel more hopeful and encouraged.

suzyq18

hi yuyueno and betty, its sad that you have both got ibc, but you have to stay positive. i was diagnosed last 29th august, my tumour was 8cm by 5cm large and i had lymph nodes that were cancer, the treatment is harsh but you will both come threw this, you have to focus on family, children . i was given a scan in june and given blood tests and they were all clear, so i am in remission now, and this time next year you will both be as well, there are a lot of people on here with ibc, who are year long survivors, and all the time the treatment is getting better, take care both, will be  thinking of you sue

Bookworm

Sorry to hear about your diagnosis. The treatments they have planned for you is extremely different from mine. I wonder if you are ER, PR, and HER2 negative 9( all three). Do you know?

Stay positive. 

shrink

I was dx in May 07 and am in remission.  You might want to check ibcsupport.org.  There are many long-term survivors there with plenty of support and info.

yuyueno

Thank you, everyone.  I am literally trying not to go on the internet and research the prognosis number although sometimes I am so fearful.  I know this type of cancer is rare, but It feels so encouraging to know there are others out there fighting this along with me.  I'm not alone. 

Bookworm, mine is ER+, PR+, HER2+.  My doctor is concerned about HER2+ and that's the reason, she said, I am getting on Chemotherapy first before surgery. 

justamber

My Mom was diagnosed with IBC Feb. 26 2008. She had her Masectomy today. I have done so much research and most everthing I found said Chemo, Surgery, Radiation (&possibly Chemo again). So when her doctor said that was  their plan for my Mom, I felt good because it was the same as what I have found in my research. I think that is a pretty standard way of treating IBC because of the aggresivness of the cancer. My mom went through Chemo (with 2 drugs, sorry I don't remember the names) once every 3 weeks for 12 weeks. Then she was supposed to have her surgery but the Dr.s didn't feel like it was contained enough. So, they added a 3rd Chemo drug and the plan was to do it everyweek for 12 more weeks. Well, she started having fluid build up on her lungs and her heart was & still is only pumping at 36%. So, the Dr. said that her heart couldnt handle any more Chemo. The Chemo was doing more harm than good. So after several short hospital stays, the dr.s pulled her off Chemo and scheduled the surgery. Also originaly she was supposed to have a double masectomy. Well, they wouldn't do a double one because that meant another hr. and 1/2 of being under anestia. Her heart couldn't handle that. So they just took the breast where the cancer was. She  just came out of recovery a little bit ago and already looks better. The last CATscan didn't show that the cancer had spread anywhere. Not even her Lymph Nodes. They were really worried that she may have a heart attack on the table or have bleeding problems (Chemo patients are at a higher risk for bleeding) BUT PRAISE GOD!!! She didn't have any problems. : ) I am so thankful and happy. I asked the doctor if the cancer would come back and she said with IBC the chance of it returning is really high. She also said that it would probably return to the bones or liver. But I believe God will take care of her. HE is better than any doctor. Make sure you all have a good support group and lots of prayers & faith. You are not alone.

mrs_X_Sunneedazee

One day at a time, by dragging our butts out of bed and taking one step at a time, and then one day you wake up, look back, and realize that you have been "GETTING THROUGH" this.  Seek for comfort and peace, ponder and meditate, don't be afraid to share all of your thoughts and feelings, whatever they may be.  

I remember well those first days.  I thought that I was only months away from dying, and I did so much mourning.  Life is now settled, even though I have had repeated bumps in the road.  I just had my first chemo this week after having a 9 month chemo break.  It SUCKS to be doing this again, but it is what it is.

I have had people ask me all the time, how do you do it?  My answer is just that I do what I have to do to stay alive and here for my husband and 5 kids, and other family and friend members.  

fightin_like_a_girl

I was diagnosed on Aug. 13th and had my port put in yesterday. I'm still waiting for the results of my pet scan and HER-2 to see what type of chemo I'll receive. I think the waiting is the worst. I have a lot of family support but my fiance works in Illinois, my daughter lives in N.C.(her husband is a marine and she is pregnant with twins) and my son is a wild land firefighter so I'm kind of alone day to day. I do know that there has been a lot of progress made and the numbers are getting better all the time for us. I'm definitely scared too but I know that this is a mind game and we HAVE to stay positive!!! It was hard to start writing because I feel like most of the women know so much about their cancer and it's all still really new to me, but I think I'll learn as I go.

yuyueno

Amber:  I totally agree that support from family and friends are soooo important!  I am grateful that I have a lot of support from my people and also places like this site where I can share with others.

Mrs. SunneeDazee:  I am starting to see this in more positive way instead of drowning in self pity and fear.  It is so encouraging to have you here, you have been going through this with strong and fihgting spirits. I admire that very much.

Fighting like a Girl:  I was diagnosed a day before you!  It sounds like you are in a similar situation, I just got my CT scan done, my port will be placed next week.  Are you starting chemo next week?  I am starting in two weeks.  You're right, I'll stay positive and take one step at a time. Thank you!

dorfar

Yuteno

I was diagnosed with IBC on 4-29-08. I'm a stage 3B (I had lymph nodes involved under my arm) and my cancer it triple negative.  In the beginning it was sooooooo hard but I told myself I was not going down without a fight. I'm almost done with chemo, I have 2 taxol treatments left. My treatment consisted of 4 AC and 4 taxol. I will have a mastectomy on the left side, possibly more chemo depending on the pathology from surgery and then radiation.

I've been doing really well. I've had very little side effects and have been feeling good for the most part.The tumor under my arm is completely gone and the tumor in my breast has shrunk considerably. I attribute that partly to my attitude(and the chemo of course).  I try to always think positive and try to find any silver lining with every bit of information I get.  There are definitely bad days though. Sometimes just the whole reality of cancer and it being IBC is a lot to swallow. But I just keep telling myself that I will beat this, there is too much to live for.

Don't read the statistics. My oncologist told me by the time its written its outdated. There are advances being made every day and I have heard from quite a few women with IBC who are out 4 and 5 years with no reocurrence. Yes, its serious and ugly, but just keep your chin up and try and stay positive. Attitude is everything!!

fightin_like_a_girl

Dorfar, Thank you so much for all your positive information!!! I was having a rough day and wasn't going to even get on the site. You know the feeling...(just an hour without breast cancer shouting your name) but I'm so glad I did! Your words helped alot!!!

Yuyueno, I tried to write back to you the other day but I guess we're limited to 5 posts a day. Who knew?! I just wanted to wish you luck with your port next week. You'll do great. Keep some ice packs on hand for the first night but after that, you'll probably be fine. Mostly my shoulder is really tight but it's not too bad. My chemo should start Thursday. We're still waiting to get my her-2 results and Wed they're doing a heart scan to make sure I can take the chemo. My fiance has to go back to Illinois on Friday so I'm just making the best of every moment with him. I'll keep checking on you. Take good care. Monique

Anonymous

Tomorrow is round one of my fight with IBC. I start chemo with Adriamycin and Cytoxan, 4 treatments, two weeks apart, followed by the same schedule of Taxol. If all goes well, the first bout will be over by Christmas. A mastectomy is planned, and depending on the path report, more chemo and then rads. So the battle is engaged. Take that, IBC!!

I may be dating myself, but I picture the chemo rushing through my bloodstream like the old video game PacMan, gobbling up the evil cancer cells.

shrink

Good luck with rounds 1-8.  I hope your positive visualization along with the chemo knocks the hell out of this disease.

Anonymous

My thoughts and prayers are with all you new IBC ladies as you start your fight.  Take heart and hang on to hope.  I was diagnosed with tripneg IBC in 2003 and am doing great today.  You can too. 

Anonymous

I am home from my first Tx, feeling OK so far. The nurses told me that if bad sides effects kick in, it may be Friday and over the weekend. And it is now 14 days and counting for my hair.

My boyfriend the nurse is coming this weekend to care for me if I am under the weather. I just want to see him and be held and told that it's all right.  He has been in my corner since my BC saga started in May. That is when I found the painful but small mass, that would grow into and be diagnosed as IBC.

I feel very blessed to have been diagnosed when my lymph nodes are still negative.

Hope, thank you for your story of encouragement.

Bette 

ebann

yuyueno I understand the fear involved when getting the news. I myself had to do the research. My oncologist told me I had a bad cancer. I did not know there was a good cancer? LOL She did tell me my prognosis was  poor. She told me though attitude is everything and that I can make a difference by just believing. That do not let her prognosis she gave me or the statistics get the best of me. That anything is possible. I was diagnosised in April with IBC in my left breast and DCIS in my right breast. My oncologist is amazed at how well my tumor has been shrinking. It is amost gone. It was 11cm. She told me it is curable now. There is hope at the end of the tunnel. I know that it is the prayers that everyone has been praying for me. That God is a major part in getting me well. I have my ups and downs we all do. Sometimes it feels that life is just passing me by with all the sleeping I do. I do feel blessed and make the best out of each day. I do not take life for granted anymore. Embrass each day! Be thankful for that day and do something each day for yourself. Whether it is read a quote, book, call a friend, email someone, buy a treat, get a manicure, (do not have them clip your cuticles) put on your makeup, always put on earring it completes you! Give someone special a hug, say a special prayer, etc. A great place to go to also is www.chemoangel.com They are wonderful.  You sign up with them and you have two chemo angels they send you cards and little surprises in the mail each week. It has been a wonderful experience and very encouraging. I recommend it to anyone having to go through chemo.

Prayers and Blessings; Elizabeth

mrs_X_Sunneedazee

I just wanted to welcome all of our poor sisters who have joined us on this site.  I am sorry that you have the diagnosis of IBC, and have to go through all of the slash, poison and burn.  This site was a life line for me.  Whether I was feeling good, or feeling down, there was always so much support, and it helps to have that support.

Bette- congrats on getting your first treatment done.  Hope you are handling all of the side effects okay.  I started chemo again (Taxol) a few weeks ago, and I am counting down until the hair starts falling out again.  At least there are lots of cute hats in style for fall and winter!!!!

Monique- your signature line is one of my favorites.  My sister had that saying framed for me when I got my diagnosis of breast cancer.  Did you get your her2 results yet?

Yuyueno-Have you started chemo yet?  Which chemo are they going to use?  How are you holding up????

elizabeth......  welcome to you too.  I am so glad that you are getting some good results.  When we see these horrible treatments working, it gives us courage to continue even when it is hard.  I will have to check out that site.  Sounds like a nice place

Justamber= congratulations are in order for your mom and your family.  I hope she is recovering well!!!!  Enjoy the time you have together, and celebrate the miracles that we do see in this journey.  

dorfar; keep up that great attitude.  Are you doing the dose dense taxol?  I only have it once a week for three weeks, and then a week off.  I don't think I could handle the whole dose at once.  It would be too hard on my blood counts, and I developed severe neuropathy among other things last time I was on it.  How are you doing? 

lovemymum

hey there... My mum was dianosed in May...she is suffering from chemo side effect quite badly, but according to the oncologists its having the desired effect... she is stage 3, HER2+ and will be starting herseptin on the 18th... she has just changed from AC to something else ( had too much info thrown at me at the start to remember which one it is)... she is due to have her mastectomy, and then radio therapy... all pretty standard for IBC!

Its odd, because reading your posts is like hearing mum talk about her cancer.. gives me confidence that she is coping well emotionally.... out of curiosity, what are the things that have helped you through, what can I do to help my mum feel supported??

The trouble with being a relative of an IBC sufferer is feeling every bump in the road with them, but not being able to take the impact away for them

ebann

Thank you for the welcome mrs_X_Sunneedazee. Please do check out the site for chemo angels. www.chemoangels.com Yes there is hope during the hards times of cancer.

lovemymum What I found for me, is my husband takes me out to dinner the day before chemo, and I get my nails done (manicure) It just makes me feel good. We go to the bookstore and pick out some books that I can enjoy while I  am resting in bed. Just sitting there and talking to me. Cleaning the house, going for a drive somewhere that has a nice view (I know gas is expensive,this kind of  time can be special) Ask her what she would like to do. What kinds of goals she has in life? See if she would join a support group and go with her! Take her to Look good, Feel Better. www.lookgoodfeelbetter.org Sign her up for chemo angels. www.chemoangels.com Go see a movie. Mama Mia! is a great fun movie. I hope that some of these things help you out. We have a different frame of mind when we are hit with cancer. Cancer does effect everyone who knows your mother. My prayers are with you. It sounds like your mother is getting the kind of care. Praise the Lord. Your a wonderful daughter to be able to support your mother the way you are. I would do the same. Family is very precious to me.

Prayers & Blessings;Elizabeth

ebann

Great News about IBC! Please read this! Spread the news!

http://www.komonews.com/news/health/27021014.html

Prayers & Blessings; Elizabeth

lovemymum

thanks for the lovely response...

I tend to support her by listening to whatever she wants to talk about... when things are bad following chemo I remind her why she is having it and say with every cycle she is one step closer to being well... She had neutrapenia after the first cycle and she really hit rock bottom... all I could do was say that if its doing that to the white cells, when imagine what its doing to the nasty cancer cells. it seemed very glib at the time, but she said it helped.

At the moment she's too ill to do anything physical, but I have been to chemo with her and we are planning to do the Moon Walk when she is in remission ( note the positive thinking with the WHEN she goes into remission)... we have also talked about thing she'd like to do when she feels up to it... I also make a point of telling her Iove her everyday, just so she's in not doubt.

ebann... can I just say, your courage is amazing... you have had so little time to get your head round it and you positivity is fantastic:)

yuyueno

Hi, Eban!  Thank you for all the great resources.  I singed up for Chemo Angels and I received two cards from my angels this week.  It has been great to have that support from people you don't even know.  I am definitely planning to go to the look good workshop!  I heard they give away great makeup!

Mrs_X_Sunneedazee!  I did start my chemo two days ago (Texotere, Carboplatin, and Herceptin).  So far so good, I have not experienced any major side effects yet.  Just dry mouth, appetite changes, and ocasional cramping/diahrea.  Meds are doing good controlling these symptoms.  I have 5 more rounds to go (every three weeks), and will have a surgery.  I have been blessed so far with no major side effects from chemo yet and also no METS according to CT Scan. Thank you so much for checking in with me. 

dorfar

Hi Mrs_X_Sundeedaze, I'm doing really well. I have my last Taxol treatment on Friday. I can't believe I have come this far.  I am doing dose dense. I have my taxol every other week. The first two treatments were not that bad. Very minimal side effects but this last treatment really knocked me down. I had a lot of bone pain and my feet feel so strange all the time.My counts have been really low throughout my taxol treatment. I'm being pumped up with Nuepugen to help. Now just looking forward to getting some hair back and moving forward to the next step. Thanks for the note.

Ebann..I noticed we have a similar diagnosis. I'm 3B and triple negative as well. I was diagnosed at the end of April. I hope your doing well.

Jadai

Hi Everyone,

My name is Joyce and my mom was diagnosed with IBC today as well as CLL which is a chronic type of Leukemia.  The CLL is not a concern at the moment as it is generally a cancer that people just sort of live with.  She started having problems about 3-4 months ago....swollen, red breast and lymph node swelling and pain under her arms.  She does have swollen nodes in other parts of her body but the Dr.'s don't know if that is because the IBC has spread or if it is from the Chronic Lymphocytic Leukemia.  This is so scary, what can I expect?  The Dr. said they normally don't stage it because it is not the "normal" type of breast cancer but if she had to give the equivalent it would be stage IV.  Anyway, what is next?  How often will she go to chemo?  How long are you sick from the chemo?  Will I need a nurse there?  Sorry for all of the questions but I don't know what to do or where to turn.  Thanks everyone and sorry that you are all dealing with this terrible disease.   

ibcspouse

Joyce,

So sorry to hear about your Mom.  As for as your questions, most can only be answered with time.  IBC is a very individual diasese.  What works well with one may not be good for another.  The standard treatment is six rounds of chemo,  surgury, more chemo and 4 to 5 weeks of radiation.  Then  depending hormome status, a follow up drug for up to 5 years. The side effects vary greatly some continue to work while taking chemo, some end up in hospital.  Most people fall somewhere between, durgs can control the extreams of most SE.    Ibc is almost always staged.  It begins at IIIb at dx if no distance mets.  I always suggest hearing from many long time survivors of IBC check out eraseibc.org,   or ibcsupport.org, or M D Anderson IBC information on their web site.  Good luck with your mom, she already is ahead of the game because she has you for support.  

Jadai

Thank you so much for your reply.  After extensive reading I see that despite what her Dr. said staging does start at IIIb.  She is having her bone scan on Monday so that will tell us more.  We have also made an appointment with supposedly one of the "best" breast oncologists in our state so that gives me a bit more confidence.  I really hope she will be able to work and just keep her mind off of things for a few hours of the day.  One more question....you mentioned 6 rounds of chemo,  how far apart were those treatments?  I would just like to have an idea.  Thanks again for the post, information and very kind words.

shrink

Jadai - My experience was a little different.  I had 8 rounds of chemo three weeks apart, surgery, and radiation (26 treatments) Some people are able to work.  Others get extremely tired and sometimes have nausea.  There are lots of meds to prevent it though. 

Anonymous

Jadai, I am having 8 rounds of chemo, two weeks apart, followed by surgery and radiation, so my experience is different too. I started with a red, swollen, painful breast and pain under the arm on that side. when antibiotics, didn't clear it up, I went to a major cancer center and they diagnosed IBC. I had a sentinel lymph node biopsy, which was negative, and started chemo one week later. I am stage IIIb, hoping that the quick diagnosis gave me a good prognosis.

The chemo has resulted in a big improvement in my breast symptoms. It is almost starting to look "normal" after three treatments.

Bette