Your Story

Inflammatory Breast Cancer
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camsdh
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Your Story

Postby camsdh » 18pm28America/New_York()

Having Inflammatory Breast Cancer puts you into a very exclusive club. The dues to belong are too high, the initiation to severe. But once you have been drafted into it, you will find support, knowledge and hope from some of the strongest women of earth. Let's tell our stories, personally or as a caregiver, friend, spouse, mother or daughter.

As long or short as you want to, your trials to dx, your symptoms, your pathology, treatment or the personal feelings or changes it has brought you. The page is for you, to help you and those who join later. Let us know if you get your strenght from God, self, family, love or chocolate chip cookies.
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GingerSnap
Forum Moderator
Posts: 726
Joined: 06pm31America/New_York()
Diagnosed With: IDC
Cancer Stage: I
Node Status: 0/2
Tumor Size: 1.7
Tumor Grade: 2-3
Receptor Status: er/pr/her2+++

Re: Your Story

Postby GingerSnap » 19pm28America/New_York()

Hey Herbie! You should find a way to let your ibc girls know that you are here, that way you can support them and they you........
PRASS MEDUSA PRASS MEDUSA
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Emerald
Site Admin
Posts: 711
Joined: 03pm31America/New_York()
Diagnosed on: 02/01/2008
Diagnosed With: IDC
Secondary Diagnosis: DCIS
Mets: None
Cancer Stage: Stage I
Node Status: 0/3
Tumor Size: 1.3cm
Tumor Grade: Grade 2
Receptor Status: ER+/PR+/HER2/Neu++
Location: Flowery Branch, GA
Contact:

Re: Your Story

Postby Emerald » 19pm28America/New_York()

Herb, you are such an asset to Cam (of course), to all us survivors, but most of all, to survivors of IBS! Glad to see you getting this forum going, you rock!
"I don't care if my glass is half full or half empty, I am just thankful to have a glass!"
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camsdh
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Re: Your Story

Postby camsdh » 19pm28America/New_York()

In May of 2005, Cam was having a routine follow up mammogram, when the tech noticed her left breast was much warmer than her right and Cam was complaining of pain.. The tech was great, she immediately called Cam’s PCP who was in the same building and had Cam seen right away. The PCP felt a lump and called the breast clinic and spoke to the surgeon to request a bx. The surgeon made an appointment to see Cam in a few days. The surgeon, on examination felt the lump, but decided not to bx it but to “aggressively monitor” the breast with MRI’s, diagnostic Mammograms, and US. Over the next two and half years, she had 7 breast MRI’s, 6 Mammograms, and 6 Ultrasounds as well as a couple of CT’s and X-Rays. About a week after every scan, Cam would receive a letter from the Medical Center saying, results of test were normal, but we would like to schedule another MRI et in 3 to 6 months.

The first lesson in all of this, which we did not know, get your medical records on regular basis. The reports were showing one thing, the notice letters Cam got, said something else.

During the two and half years of “monitoring”, Cam’s breast changed. The left one grew more dense, the skin was seen on images to be thickening, the micro calcifications were becoming more diffused, the pain grew, and the shape changed. Still the letters always said B9. Suddenly in Oct. 2008, a punch bx was ordered and done. We did not know that the notes later found in the medical records said suspected Inflammatory Breast Cancer. No one ever mentioned the C word to Cam. If they had said IBC, it would have been a foreign language, had never hear it before.

The Punch bx was done on Oct 16, 2008. A week later, Cam got the letter. The bx was B9. Cam felt relieved, but her breast did not like the punch bx being done. It began swelling, turning first red then pink then sort of Purple. The pain grew beyond what she could stand, the breast became very hard, the nipple inverted, and a rash developed over the top of both breast. The breast surgeon looked at this and said oh, you have a rash, rub over the counter hydro cortisone on it and check back in a week or so. The BS did not address the fact that Cam had been in the ER only days before with the breast pain.

Cam left that office, and had an old family doctor call to make an emergency appointment the next day at a different Breast Clinic. The new BS took one look and said you have a rare and aggressive breast cancer known as IBC. We went home from his office worried but not scared. Then we looked up IBC on the Internet, and had the crap scared out of us. I did not pass go, did not collect 200 dollars, I got on the phone and made Cam an appointment with, at the time, the only IBC clinic in the country. The Morgan Welch Clinic at MD Anderson in Houston.

By this time, the Cancer had spread. It was now in both breast, nodes both auxiliary and above the clavicle, it was now stage IV. A reread of the bx of Oct 2008, showed it had been misread, the IBC was there.

I will update her treatment and progress later. Please let us hear your stories.
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GingerSnap
Forum Moderator
Posts: 726
Joined: 06pm31America/New_York()
Diagnosed With: IDC
Cancer Stage: I
Node Status: 0/2
Tumor Size: 1.7
Tumor Grade: 2-3
Receptor Status: er/pr/her2+++

Re: Your Story

Postby GingerSnap » 19pm28America/New_York()

Women do not know enough about IBC before they get it. Most only think of b.c. as getting a lump and that you can always find it with your BSE.
PRASS MEDUSA PRASS MEDUSA
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Mimi2
Forum Moderator
Posts: 8077
Joined: 18pm28America/New_York()
Mets: None
Cancer Stage: Unknown
Node Status: Unknown
Tumor Size: Unknown
Tumor Grade: Unknown
Receptor Status: Unknown

Re: Your Story

Postby Mimi2 » 19pm28America/New_York()

Herbie, I just wanted to say THANK YOU FOR BEING YOU! You make all of us women feel special. You say we are the brave ones. You are brave, Herbie. I so respect the way you have jumped in with Cam, looking up the best hospitals, treatments and just being so involved. What a lucky woman she is to have you.

It is so often just as hard on the caregiver as the one who's going through this horrible journey. You, Herbie, have been on this journey every step of the way with your beautiful wife. My husband was here for me throughout my diagnoses. He, however, was at a loss as to what to do as far as researching..things like that. Sometimes I'd get my little feelings hurt over small things..can you believe that? Didn't think so. But he was with me every treatment I had, each oncologist visit and drove me to Duke in about two hours (it would have taken me at least 2 1/2 hours :) ). It is hard to be a caregiver..PERIOD!

I didn't have IBC, but I just wanted to jump on here and say I think you are great, and I know that you can help other women with this awful disease. Now we just need to get them over here to talk to you. ;)

It's 11:44 PM and I think I's going to bed :!:
Shirley
Ecclesiastes 10:2 (NIV) "The heart of the wise inclines to the right, but the heart of the fool to the left".
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Emerald
Site Admin
Posts: 711
Joined: 03pm31America/New_York()
Diagnosed on: 02/01/2008
Diagnosed With: IDC
Secondary Diagnosis: DCIS
Mets: None
Cancer Stage: Stage I
Node Status: 0/3
Tumor Size: 1.3cm
Tumor Grade: Grade 2
Receptor Status: ER+/PR+/HER2/Neu++
Location: Flowery Branch, GA
Contact:

Re: Your Story

Postby Emerald » 20am28America/New_York()

Herb, I am so glad you have shared Cam's story here with everyone! I have no doubt it will help save another woman's life!

You are such a strong incredible man!
"I don't care if my glass is half full or half empty, I am just thankful to have a glass!"
debralynb
Posts: 25
Joined: 27pm28America/New_York()
Diagnosed on: 1-18-2008
Diagnosed With: IBC
Mets: None
Cancer Stage: 3b
Node Status: 2/14
Tumor Grade: Unknown
Receptor Status: Her2/Neu +
Location: Knoxville, TN

Re: Your Story

Postby debralynb » 27pm28America/New_York()

First of all let me just say how blessed Cam is to have you Herbie. I am so sorry that she has had to endure those years prior to treatment. I will pray for her strength and healing.

As for my story -
Sept. 07 I had a baseline mammogram which showed denseness in my left breast. I was told to have a repeat mammogram in 6 months. In November I noticed changes in my left breast - it had become swollen, I had some pain,warm to the touch, had the inverted nipple and my skin had that orange peel look. I thought I had an infection but waited a few weeks to make sure it didn't return to normal with my cycle.

It didn't so in December I scheduled an appt. with my internist. She thought it was an infection and did two things - first she prescribed antibiotics but she also scheduled an appt. with BS just in case the antibiotics didn't work. She did tell me that "breast cancer doesn't hurt". I've learned since then that isn't true. I went to the BS who had notice the "subtle" changes and referred me to the Breast Center for another Mammogram and Ultrasound. I went in the Breast Center around 8 that morning and the Mammogram and Ultrasound showed some denseness and skin thickening. The radiologist wanted to do an MRI and possible a biopsy. Luckily the MRI dept had a cancellation so they could do it right then. The results showed a pattern indicative of an infection. She said that sometimes cancer can be mistaken for that so she wanted to do a biopsy. I would get the infamous results two days later. She referred me back to the BS and an Oncologist. I still didn't know what type of cancer it was - call me nieve but I didn't realize that were so many types of BC. I looked on the internet and saw IBC and said OMG that is me. When I read the treatments I got this sickening feeling in the pit of my stomach. I stopped looking on the internet - because that was to scarey of a place especially becuase I didn't know the type of cancer it was yet.

The appt. with the breast surgeon confirmed for me that it was IBC and I was stage 3b and I would have a mastectomy, chemo, and rads. The oncologist confirmed this and said that I would have chemo first, then surgery, then rads. At that time we knew it was in 1 lymph node. The pathology report after surgery confirmed 2 were affected but did get clear margins. Cancer was no longer found in the breast tissue but found in the lymphatics. I handled chemo fairly well with some fatique, and stomach issues (not really nausea but indigestion.) Around my 4th treatment I was anemic and had to get shots for red blood cells and IV iron. That was the worst I felt. Surgery was pretty uneventful with no complications. Rads is what I feared most but it was uneventful as well - just a little tan.

I am now cancer-free (had PET scan in Nov. and recent blood work). Currently I am waiting for insurance approval to have my recon. I have decided on Lat flap with expanders and implants. I also decided at that time I will have the other breast removed. I just don't want to have to worry about it anymore and I am tired of being assymetrical. One think I have learned is that God is in control - and I saw that with my diagnosis, my doctors, the chemo rads, surgery. Sorry to be so lengthy and I have probably even left out something.

Hugs,
Debra
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camsdh
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Re: Your Story

Postby camsdh » 28pm28America/New_York()

I will try my best to outline the treatment Cam had. Most of this will be by memory so please excuse the spelling.

The first treatment Cam received was on the day of her DX. The doctor that did the excisional BX told us he would call just after 5pm the day after. While waiting for the call that day, Cam finally had enough with my hovering and pacing. She threw me out, told me to go play golf before she was force to knock me out. I left and half played 7 holes. On the 7 th hole, as I was fixing to T off, I saw something on the ground. It was a silver St Jude medal. We live in an area where there is a very small catholic community, and I know of none that belong to our small course. Cam had been raised Catholic, but neither of us had been to church in a while, even though we always believed.
I took the coin to an old jewlery store to see if he could mount it so Cam could wear it as a pendant. At first the clerk said they did not have any kind of bezel that would fit. I told her about my wife, and she asked me to wait a little bit, she went to the back, and found one that was also silver and a perfect fit for her ST Jude.
She mounted it and I took it home. Cam had a large silver rope chain, she had not worn for years so I put it on that. As I handed it to her the phone rang with the Dr telling us it was IBC. St Jude is the patron saint of hopeless causes, Cam has worn it every day since.
Cam began with TAC plus Avastin, she had 5 treatments on a three week cycle. The symptoms went away with the first treatment, and the response was great. The Pet/CT was done after the third treatment and showed great response, the next Pet/CT done 6 week later showed the tumor was still getting smaller, but at a slower rate, So the Dr changed to Gemzar, Carpo plus the Avastin. She again had great response with the tumor swrinking and skin mets, rash going away. But After 4 treatments, a MUGA showed Cam's EF was now at 27, so the Dr changed her to Ixempra and Xeloda. She was now very weak, and had trouble breathing..High level of pain and nausea that put her in the hospital several times. In Nov. She was NED. and took a month chemo break. In Dec. She began again with Navelbine. Her Pet in Jan still showed NED. Last week, almost a year to the date of her first Chemo treatment, the Skin mets came back. Since she is not a candidate for Surgery or Rads, the Doctor has decided to move her to phase 1 clinical trials. We go back next Tuesday to see the results of her latest PET and work on a plan.
She still has St Jude around her neck.

PS She is Triple Negative so options do get limited.
lexi
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Joined: 27am28America/New_York()

Re: Your Story

Postby lexi » 04pm31America/New_York()

Okay, my story in a nutshell. I was showering and felt a spongy like lump. Pretty small in the 1:00 region of my right breast. Felt it and honestly didn't give it much thought. Breast cancer never entered my mind. I had no family history, as far as I know, and I was pretty darned ignorant about the subject.

Fast forward several months. I just wasn't feeling so well. Tired, irritable, and I was having pain under my right arm pit. Achey most of the time. It hit me pretty suddenly one day and my hand went to the lump on my breast.

I phoned the breast center and they scheduled me fairly soon for an appt. I had a mammo and then an ultra sound. The tech didn't like the looks of the lump. He said he'd get the lump out whether it proved cancerous or not. ( I am pretty sure he knew). :(

Had a mast 2 weeks later. Removed a multi-focal 3 1/2cm tumor. 5 pos. lymph nodes. Diagnosed w/ IDC. ER/PR- and Her2+.

Fast forward a couple of weeks after my surgery. Before the surgery I had a small pimple like bump above the lump. After the surgery, the pimple spread out into a small rash. I got my Dr. Love book out because I remembered reading about IBC. I made an appt. w/ my onc and she thought it was a reaction to the tape used after surgery. I said the pimple was there prior to surgery. She scheduled an appt for me to see a dermatologist. A skin punch biopsy was done and sure enough it was pos for cancer. So I went from an IDC diagnosis to an IBC diagnosis. IBC can present with different characteristics. Swollen, red, angry looking breast. Or a rash with or w/ out a lump.

I had 4 txs of A/C, 4 Taxol and one year of herceptin. Also had rads x 30. I finished my year of herceptin in Nov. 06. I had recon started in July of 08 and am scheduled for my exchange surgery on the 16th of this month. Other than aches in my back I am feeling okay. So thankful that I have had three years with my family and hope for many many more.

Lexi

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