Newly diagnosed w/IBC

I am 44, also was dx in October of this yr. I am on 12 weeks Taxatere/Herceptin. Surgery in January with a yr. of Herceptin to follow. IDC/Inflamitory/fast spreading..BRACA1-/BRACA2-. I for the most part have had my breast go back to normal except fot the thickining with a little bit of reddness still present. I am up to week # 6. Still have over 1/2 my hair volume. Had very,very thick hair to begin with. We will survive. God will see to it. We are here for you.

Oh Please be so positive that no negative can get in your heart.  I also had IBC, Stage 4 by the time I could find funding to see a doctor.  My breast had no skin covering over it and was leaking fluids.  The first surgeon doctor I went to was so negative, he said if I did not get care Right Now that it would eat through my ribs, lungs and eventually out to my back, bad huh? He wanted to remove it the next week. Well, I set out to find another doctor that did not yell horrible things at me and offered no help or resources for the financial part.  I did find a program to help me pay for it and also a wonderful group of doctors at UAB.  They didnt even tell me this negative stuff, I did have a 6 cm of IBC, that is to say my whole breast was covered with IBC and no skin!  Also had a piece of cancer in my liver.  I also was HER2+

I had 7 mos of Tamoxifen, Carboplatin and something else along with the Miracle drug Herceptin, I am now in remission 4-5 months, have only scar tissue on my breast, and yes, I have my breast, no removal, no radiation, no lumpectomy, nothing.  Only Chemo for 7 mos and weekly Herceptin treatments.  Now am on every three weeks Herceptin.  Please have hope and be positive, my doctor in the begining said "more than likely I would die from this cancer"  I have no cancer in my body.

Praise the Lord, Have Faith and Never let the Negative Take Over

Bonnie, Thanks. Have been doing pretty well till this week. Have had a bad reaction this week. Had to start taking the anti-nausia medication. Every bone in my body hurts. Been having chest pains and apparently I'm now having full menapause ( no period this month ). Having a hard time breathing like someone is setting on my chest 24/7. My head feels like it's floating in the clouds. Get dizzy everytime I stand up. Sorry needed to get that out. My husband is very supportive , but sometimes I just need to bitch a little and he just doesn't seem to understand that sometimes. He thinks I should be up beat all the time. Sorry, I just can't. Once in a while I just need to cry and bitch and feel a little unhappy for myself. I don't let it last, but sometimes I just need to do it. I am so glad that I can come her and do it. That you all understand just how I feel. Thank you so much for being so supportive, I really appreciate it very much.

Hi and thank you for the welcome.

I hope you are doing well.

I have been really going thru it with Doctors and my symptoms. For a month now I have been having very painful breast, stinging, stabbing,  pulling, engorged, breastfeeding pains. Also incredible itching all over. My pains also include my armpits and right over my collarbone.

I have expressed my symptoms and concerns to 2 doctors. One literally laughed at me, and both tell me that it is menopause. I am 48. Well, I can accept the whole menopause theory, but can we rule out breast cancer?

So, I finally got a mammogram last week. Results should be back on friday when I see my GP again. In the meantime, I have contacted UCLA and Cedar Sinai, to see if I can get into their imaging/screening trials. I do not know if I will have any success getting any futher testing from my GP. I do see a GYN on dec 23, so maybe this doctor will hear me out.

I am in so much pain and discomfort. My GP gave me an antifungal cream to put under my breast. It helped a little, but I still have these strange looking bruises under my breast, and they just won't go away! I am Black, so I am not getting any red marks or swelling, just the symptoms that I mentioned. Hopefully, I will get an answer. Pardon my rant, but I have not been able to really get these feelings out except to my dear husband, who is just as worried seeing me like this.

I am interested in knowing if anyone had subtle symptoms of IBC before the major swelling and redness took place.

Thank you so much, and my thoughts, prayers and love go to each of you.

I was diagnosed with stage 4 IBC in October/2008. After 8 rounds of very agressive chemo, mastectomy of right breast and 34 radiation treatments I'm happy to say I am cancer free! I have developed lymphodema but am managing it. After surgery I was downgraded to stage 3. The pathologist could even find the tumor!  Praise be to God!

Paradiseflower:

I never had any of the symptoms listed for IBC the only symptom I had is what looked to be dermatitis.  The only way to get the correct dx of IBC is by a biopsy.  I would request a punch biopsy of the area that looks bruised.  I agree with Faith316.  I too had a normal mammogram.

Hugs

Laura

Hi Everyone.

Thanks. My mammogram was "normal"....my breast are awfully dense, and there are calcifications. My Gp and Gyn refuse to order an MRI. So today asked my GP to refer me to a dermatologist before I itch my breasts off of my body! She referred me to an allergist instead, but I understand that they do punch biopsies as well.

So,I will be seeing an allergist/immunologist this Wednesday Dec 16 2009. Maybe, just prayerfully, I will get  the punch biopsy. I will keep everyone posted.

 

Helen

tmccl... I hope you are doing well with your treatment.  I am HER2+ too, I get Herceptin every three weeks, I also get Zometa and Femara.  I'm on radiation 16/35 now.  I've been thinking about you.  Happy Holidays all!!!  XOXO Jessica

HI BONNIE

Thanks ,i went to the doctors today she gave me ointment for the rash and said if in two days it hasn't cleared i will get an ultra sound and mamo , i have booked  that in already so i don't have to wait its easyer to cancell ,and my sore groin , she said it wasn't my gland but feels more like my pelvis bone  she checked it out twice to be sure ,she told me to ask my onco about it but he is on holidays until the 22nd  so ill sort out the rash first  ill keep this thread up dated on it keeping fingers crossed

JOANNE