Anyone recently diagnosed, Feb 2014 here

Meadow

It is precious to hear how your kids are coping. I cannot imagine going thru this with little ones, you are a hero. I am so glad your husband is doing ok, he has a lot on him I am sure. I have 6 more treatments, of a total 33. I am burned on my chest like if I was an ironing board and someone scorched me with the iron....a triangle from the center of my chest across the left breast and finishing under my armpit. I blistered this last week, it is very sore and red. I am a redhead with freckles , always burned then tanned. But thankfully I am now on boosts, which means the pattern they have used is now finished, and the last 7 treatments will be on the mastectomy scar only. They said as the surgeon pulled the tissue from my body during the mast some free cancer cells could lodge in that area, and the concentrated boosts are to finish them off. So just when I think I cannot tolerate another treatment, I get to switch to a lesser burned area, and I can finish this now. My surgeon has put in implants after my mastectomy, he said this is a technique  he learned from MD Anderson, not tissue expanders but gel implants. I did not want a tram, I do not want to lose muscle tone in the abdomen, although the tummy tuck was appealing. But my plastic surgeon is concerned the radiated implant may not tolerate the rads, it may shrink and encapsulate, so if it does he will have to change it out after rads. So far is is ok. I know it is prob strange to know that a stranger is praying for you and your family, but I am. That is what breast cancer does, it creates an extended circle of friends that share a common struggle and goal of restored health. Tell your husband my spouse and I are thinking of him.

Jules_NY

I hope you know the prayers and thoughts go both ways!!! To you, your husband and your family!! 

Sorry to hear the rads are rough on you but glad you can move onto another site. I'm fair skinned like you, all freckles. I barely tan. I use the same sunblock I use on my kids

My breast surgeon mention my reconstruction options. And she said the same think about the implants that the rads may destroy them. She mentioned the tram flap and I have also done some research on the diep flap, I think it's called. I know I will have to speak to the reconstruction surgeon about my options and that's still down the road for me. But my breast surgeon was very good about laying it all on the line for me. I need that I'm a planner! Lol. 

My next decision is whether or not To have a bilateral mast. I'm leaning that way though the breast surgeon doesn't think having a 20% chance of developing cancer in my right breast is a lot. Given the fact that I had something like a 1% chance of developing it at all. 20% almost seems like a guarantee!! Plus I can't help but think that maybe I have some other kind of risk factor that hasn't been discovered yet. Sounds silly I guess. 

Be well!

anniegee

I was diagnosed with IBC in mid-December of 2013 at 37. At first I thought I had mastitis in my right breast because I had just finished nursing my daughter and it was swollen, red, and painful.  But my OB was worried because she saw some skin thickening so she sent me for a mammogram (my first), which showed some areas of concern so they had me go for a biopsy that same day, which was positive for cancer.  It had spread to many of the lymph nodes under my arm/around my collarbone/around my right breast, and (the scans showed) there was some suspicion about some of the lymph nodes around the other breast which technically meant that I was stage IV.  Unfortunately, I learned that I was
triple negative, so I wasn't a candidate for Tamoxifen or other hormonal
therapies or for Herceptin. I am just finishing up chemotherapy now
(I did 4 cycles of A/C and am now on my 3rd of 4 cycles of Taxol).
After I'm done with the chemo and have had some time for recovery I'll have a mastectomy of my right breast, and then (again after a recovery period) radiation.   

Once the radiation is completed I'll have a mastectomy of the other breast-- I also learned that I was positive for a mutation of the BRCA1 gene, which is why I got cancer at 37-- and reconstruction of both breasts.  I'll also have an oopherectomy, because the BRCA1 mutation also increases my risk for ovarian cancer. 

Akevia

Hello Anniegee,

  Sorry to here about your diagnoses. Hearing other peoples story about IBC is like hearing my own. This form of breast cancer spead so radially and it doesn't seem possible to detect it early. Well we all will fight this terrible disease.

God bless!!!

anniegee

Thanks Akevia!  It's so shocking how quickly this disease moves!!  God bless you too and good luck.

Akevia

Anniegee I agree!!!! And good luck to you as well!! 

jessozzie

Hi IBC ladies, has anyone got their pathology reports after surgery??   how are they??

Meadow

Annie and Akevia, yes, fight hard with mind body and soul. It is an aggressive cancer but we can beat it! after A/C and taxol, ending in Dec, I had my double mastectomy, and my pathology came back clean. Annie I am also triple neg, and had lymph node involvement. So we can do this... stay positive! And thank God for good doctors, good meds, good support from friends and loved ones.

And hello Jessozzie

Akevia

Hello Meadow,

  I agree 100%. God bless us, we can do this!  :-)

jessozzie

Hi Meadow and all lovely IBC laies on this site, how are you all?  i am going trough radiation now and my skin feels like its on fire..I use sorbelene cream but is there anythign better?

Hugs to all...Jes

Meadow

Jessozzie, how are your rads going? I hope you have found some relief.  I have to say I am burned up. Tomorrow is my last radiation treatment, and I am so glad. I found that silvadene, I am not sure of the spelling, workks the best for me.  It is a sulfa based cream that is used in burn units, my radiologist prescribed it. I am so sorry you are struggling.  Hang in there strong lady.

tmess0520

hi ladies I am 39 years old mother to three teenage boys...I am currently fighting with doctors..for the past 5 weeks I have been fighting and I finally have an appointment with a breast specialist..my left breast is swollen red extremely painful with two open sores...ive been to 4 doctors who have all told me something different...I have some dimpling around the areola..i had a breast reduction in 04..anyway im scared to death because I know deep down this is ibc..ive been through two rounds of antibiotics and inflammatory meds..nothing has changed its just getting worse..mammogram was normal but ultrasound showed some abnormal areas..but ive been told it was mastitis then cellulitis and now shingles..i think these doctors are crazy..the first breast surgeon I went to ask what I knew about ibc other than what was on the internet..he made me feel stupid..my gyno was the one who first told be about ibc because she said I had classic signs...please help

Akevia

tmess0504,

  Sorry to hear you have to go through this espeaically with the Doctors. I don't understand why they think your crazy for thinking it's IBC. It's so sad you have to fight the doctors because the meds they are giving you aren't working and your getting worst. I hope it's not IBC but it sounds like it could be. I knew I had it months before I was diagnosis so I prepared myself when I heard My oncologist said this looks like IBC. I handled it really well and I think they think I'm crazy because I'm always smiling and haven't cried once. Scared won't changed a thing and I have my life and daughter I have to fight for so it's no time to be scared. Hope for the best and prepare for the worst. I will keep you in my prayers and hopefully the doctors are right on this one.  

Good luck 

tmess0520

Thank you so much for your thoughts and prayers I will keep u posted I see the other surgeon on Thursday.. have u started treatments and how r they going.

Akevia

yes, I've been in treatment since Jan. they are going find. I have a tumor, so I did treatment before surgery. I see my surgeon next week so we can schedule surgery. I refused the full treatment, do to the problems the AC chemo caused. I'm not willing to have my immune system totally wipe out and the chemo I'm on has done it's job and shrink the tumor. Taxol takes about 3 months I started getting some side effect after the second month but nothing I can't handle. I used cold caps to keep my hair, I didn't want to go around and have people feeling sorry for me and knew what was going on with me and it has helped a lot. Again I hoped everything is okay and it's not IBC. Your very smart for choosing not to give up!!!

Jules_NY

tmess so sorry to hear you are going through this. In all honesty the waiting was the worst part!! I does sound like it could be IBC. But it also may not be. My mammo was normal too other than skin thickening and my sono should abnormal areas as well. That's whey they biopsied. You are your own advocate, I'm sorry you feel like no one is listening and that they spoke down to you. That us completely uncalled for!!!!!. I hope the second surgeon will help you. If it is IBC we will be here for you!!

Akevia I feel the same way you do. It's all business now. Just gotta get this done!! Are you doing weekly taxol?

Akevia

Jules NY, yes I'm on weekly taxol!!

Donna2012

Jules & akevia,  I was where you both are a little over a year ago, and I remember it all very well.  It will get better & this will not be your life forever.  The treatment is tough & long, but after you are done it will seem like it went by quickly. 

Akevia

Thank you Donna2012, I needed to hear that!

tmess0520

Thanks to u all and good luck to everyone I will keep u posted 

tmess0520

I also have other concerns I've gained Weight for No reason and I stay swollen. Hands arms feet ankles and neck.. should I be concerned about this as Well.. I worder if It's all rela

Jules_NY

tmess I don't think those symptoms are related to IBC or any cancer. Usually with advanced cancers you lose weight. Don't know if this info helps you or not. I think that is something else to look into. 

Good luck

tmess0520

Thank you seeing the breast specialist tomorrow.. I will keep u posted..

despinagr

Medaw what was your symptoms? 

tmess0520

I think ur asking me my symptoms include swollen very painful breast with red and purple spots that cover the lower and side of my breast.. swollen lympnodes as Well

amarantha

HI Jules NY, I'm going through this with you, too, symptoms appeared overnight just as you described. The first four treatments of chemo (beginning in December !) did nothing  (or seemed to do nothing) so now they are combining various kinds of radiation with chemo all at the same time (Cisplatine once every three weeks and Taxol two times every three weeks) - and we're finally seeing a little bit of improvement in the breast. Surgery is scheduled for May 20 to remove the breast. I'm holding up okay. Every day I feel like getting down on my knees and thanking France for it's health care system.

optimi

Anniegee, your story sounds so similar to mine! I was dx last Decemeber with IBC after I found a lump and a solid mass in my left breast (i still dont understand how the mass went unnoticed by me as it was rather big and solid by the time the burning sensations started).Mammogram and ultrasound were inconclusice but the biopsy came back positive for IBC.My cancer is also triple negative and I tested positive for BRCA1. I have 4 sessions of A/C behind me and am now 7 sessions into 12sessions of Taxol/Carboplatin regimen.I can't wait for the chemo sessions to be over but at the same time I am anxious about what's to come, BXM, reconstruction and radiation. I am currently in the process of 'interviewing' surgeons, PCs and rsdiation oncologists. It has helped me tremendously to have a great support network of family, friends and workplace behind me. And my 3yr old daughter usually does a great job diverting My thoughts. Through all this suffering and anxiety I have to say I am grateful that I am on the path of healing (the tumor has noticeably shrunk), that I was dx at a young age when recovery certainly is easier (I am 32) and above all that god has showered his mercy upon me and my family during this challenging time!

How are you and your family holding up? This certainly is a difficult path for all of us but I am  hoping and praying that everyone in this forum will get through this 'phase' and get cured once and for all.

jessozzie

Hi all, i never knew this, but with all IBC  the nodes are positive, they become negative after chemo for some...after they are removed....if the chemo works well and you are lucky they will all be negative,, i think i am right!

Jess

Jules_NY

amarantha- I'm so sorry you are not responding to your first round of treatment but glad to hear something is happening now! I just hope it is not harder on you! My surgery is not scheduled yet. I start Taxol on 4/25, once weekly for 12 weeks. I also meet with the surgeon that day to discuss my surgical plans. I'm glad to here you are holding up. When those moments come and you just can't take it pour it onto this page, we'll be here for you!

Annie glad to hear you tumor is responding!!!!! And you are on the home stretch of chemo. I felt the exact same way you did....how could I have possibly missed this. That's the nature of IBC it just sneaks up on you over weeks or days until it reaches a point that you can't ignore

Jess- yes unfortunately Since IBC grows so rapidly usually when it reaches a point that is noticeable it is already in you nodes. I'm hoping we will all respond (if we havemt already) to treatments before surgery. 

I just finished my last AC yesterday- good riddance!!! Not looking forward to the next few days, Monday is usually my worst day. I didn't quite bounce back fully from the last treatment so I am a little nervous this recovery might be tougher than usual. 

Hugs to all

Meadow

Jules hello! and congrats on finishing the "red devil" chemo. Taxol will prob give you different side effects, it did me. Not as much fatigue...that was welcomed. Spring is here in full force and that is certainly welcomed too. 

Amarantha yes I am very glad to hear your cancer is responding. Interesting the cocktail of drugs your doctor in France is using. I am so glad you are seeing improvement.

Optimi, yes this cancer is sneaky, so often I hear how it presented overnight. Mine did too.

Jess, interesting comment about the nodes being positive before chemo. There is still so much I am learning, that sounds very interesting. How is your radiation going?

Good day to all the ladies!