So scared & mad it may be IBC-already had AC/T

g94u67

I'm so scared. I was DX last year as TN Stage 2. Had a lumpectomy 11/5 and 4 rounds of AC then Taxotere finishing 2/20 this year. After finding out I'm BRAC+ I've been in the process of obtaining a DMX and oophrectomy.

In March I noticed a small "bump" under my right breast. I showed it to my Onc. and Gyn. and they both said "It's nothing". Now this rash (3 bumps now) is spreading and my right breast has swollen. PS saw me last week and only commented on the swelling. Orange peel skin too.

I just read that so many TN's cancer transgress into IBC. I can't believe I'll probably have to go through chemo again? Will it work? I'm so pissed the Dr's didn't suggest the mastecomy for me. It should be mandatory for all TN patients. It seems my Dr's aren't up to par on this disease!

What test should I demand?  I just don't want to wait any longer.  I remember waiting a month for a Pet Scan.

I've been back to work for 4 months. I'm so upset.

Jeannine

g94u67

Thank you Bonnie. 

I just had a visit w/my Onc. and of course she doesn't believe it's IBC.  She referred me back to my surgeon for an external biopsy.  She said the Radiology Dept. doesn't perform them. She kind of ticked me off to throw it in his hands. I was hoping she'd issue the PET Scan.

 Will an external biopsy show IBC? 

I appreciate your info.

 Jeannine

Anonymous

Jeannine, an external biopsy of the skin would show if it is IBC. That is probably the best way to find out for sure. I am still hoping and praying that it is not IBC.

Bette 

g94u67

Hi Bette,

 That's what I'm having today @ 3:30 p.m. 

I'll pray for you. & You pray for me.

God Bless,

Jeannine

FloridaLady

I hope you ladies have good news this week.

Flalady

g94u67

Unfortunatley Flalady, I don't.  Dr. believes it's metastic bc.

I know you've had quite an assortment of chemo coctails.  I've already had 8 rounds of AC/T.

What type of chemo should I inquire about now?

Jeannine

Anonymous

Jeannine, you are in my prayers. Please keep me in yours.

Bette 

Faith316

I was dianosed with IDC in 4/08.  Lumpectomy and 2 of 8 nodes positive.  Had 4 rounds of AC and then 12 weekly Taxol and Herceptin, followed by 30 rads. 

I started a rash on the same breast near the end of my radiation tx, but since I was so burnt and blistered, thought nothing of it.  But, the burns went away and the rash and swelling did not.  I had a mammogram which was normal around the same time.  My surgeon thought the rash and swelling were probably radiation related.  My medical oncologist thought the swelling could be radiation related, but not the rash.  When I asked if it could be IBC  He said he didn't think so, but couldn't rule it out and let's just watch it.  Come back in two months. 

I decided if anyone would know if it was a radiation side effect, it would be my radiation oncologist, so I made an appointment.  He said the swelling could be, the rash no, but he also didn't think it was IBC since it was not presenting like a textbook case.  I also did have some very slight peau d'orange but not greatly.  But after watching it for two weeks, we did an excisional biopsy and a punch biopsy and they both came back postive for IBC. 

My med. oncologist had never had a patient get IBC while still in active treatment.  They decided that although my Herceptin had obviously not prevented recurrence, it must have slowed it down a little because IBC usually spreads like a brushfire.  So he sent me to MD Anderson to get a second opinion about treatment since they have an IBC program.  The oncologist there also had never seen somebody present with IBC while still in active treatment.  He started me on two new chemo drugs -- Tykerb and Xeloda and told me to stop my Herceptin infusions.  I have been on the drugs for 3 weeks and already my rash is gone. 

I go back to Houston in mid-August again and then we talk surgery.  I want to have bilateral mastectomy with DIEP reconstruction so am currently researching that.   I live in WV and would prefer to have surgery closer to home but also want to go someplace where they do lots of DIEP and good results.  If anybody has any suggestions of where to go, I'd appreciate if you would share.

g94u67 -- What is TN?  Also, did you get the result of your biopsy?  I also had AC + T and Herceptin and now on Tykerb and Xeloda.  (Herceptin and Tykerb are both for HER2/neu positive so wouldn't be appropriate for you.)

FloridaLady

g94u67

Sorry for youy bad news...I would ask for carboplatnium, Gemzar & Avastin... but if you are brac+ they may not want to use these because the new research on Parp receptor needs Gemzar & carbo as part of the new trials and you can not have used them before.  The other side of this is that these are early trials only in Texas and you don't know if this has any value.  This combo kept my skin clear for two years and the doctor's could not believe it.  Another drug is Ixempra...I did get a great response but when my bc returned it was much much worse..other told me the same thing.  I do know some who used Navelbine(a lung chemo) ,

Flalady

TN is triple negative breast cancer (unkown receptors)

g94u67

Faith: TN means I have no Estrogen, Progesterin and HER2 (forgot that one) Difficult to treat if there's a recurrence and no set protocol. Glad to hear the chemo is working for you. I understand the NOLA institute in LA is one of the leading facilities for the DIEP flap.  I was so looking forward to my implants. Now that'll have to wait

Thanks FLady, my PET lit up like a Xmas tree. 3 areas plus 1 node behind the breast wall BUT my cancer is still localized Amen. Hearing about your symptoms it kind of seems we have a very similar bc.  (I remember you mentioned those bumps which alerted me to IBC) I, like you also didn't have a terrible horrible reaction to chemo.  I will definiltey inquire about those chemos and the new PARP inhibitor.  I just don't really trust my current Onc. but I want to start TX ASAP. (? Have you tried eating rattlesnake meat?) I just purchased 2 and figure it can't hurt. They are supposed to aid w/cancer.

I got the run around today w/the Ins. co's and Dr. rererral too. They referred me to a Dr. @ UCLA who is on Med. leave. HELLO! So frustrating. I'm mentally exhausted.

Tomorrow is a new day.

Jeannine

tibet

Dear Jeannine

I am so sorry about your bad news. Upon your dx in 2008, did you do a PET SCAN then? Also did the doctor ever indicate if you had vascular invasion in the path report?

I remember you did not have any node involvment but sometimes it can also travel thru blood. If you had a mastectomy, would it eliminate this risk of IBC? Where was the location of your primary tumor in 08? Did you have DCIS and IDC at the same time or only IDC ? Be strong. Love 

g94u67

Hi New

Yes I did have a Petscan in2008 (another this July).

No last year my bc was IDC -TN only.  But...Dr's ill advised me to have lumpectomy before I rec'd BRAC1+ analysis. (Test results dated 6 days before my surgery! Who sat on it?) BS indicated no history of bc on mom's side so I shouldn't be positve...well I was.

 I had 8 rounds AC/T.  I forwent RADS because I was going to have the DMX in June (waiting for my son to finish school). Well about May I started to notice a rash below my nipple on rt. breast.  Rash started to increase.  I was set to have DMX-reconst. but Pet Scan indicated cancer returned. Interestingly enough, all Dr's still have not confirmed it's IBC but I know it is.(My mammo was also clear in May). I read on the IBC site that many TN cancers transgress into IBC. It's so odd that this cancer is still so unrecognized.

But the good news is I was able to get on Ixempra (new strong chemo for resistant bc & works well with TN's). Just began yesterday. So far no real SE's.  I'm also on Xoleda. My cancer is still localized but is aggressive.

I'm keeping the faith! Wish me luck.

Jeannine

tibet

Jeannine

Wish you good luck and hugs.

Did you have any BC history on your dad side? They can also pass the gene from dad side.

Was the rash at the same place where your original tumor was? Did you have vascular invasion original path report?  

g94u67

Thanks New.

 Yes My grandmother (which Docs said didn't matter) on my dad's side had bc (in her late 70's). eventually passed from it. I've heard that the gene's from dad's side can be stronger.  It must be, because no one on my mom's side has bc. I'm the first.

No my rash was not where my original tumor was. (Same breast though).

I had at least 1 node believed to be positive originally but not stated.

Jeannine