IBC DIAGNOSED, LETS SHARE OUR STORIES!
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HELLO SHRINK,SHELLY,SUNNEE,KIMMIE 39, LAURA, AND BINNEY 4 AND ANY LADIES THAT I FORGOT....
I SAID I WOULD UPDATE AFTER I VISITED THE DR. I WILL TRY NOT TO MAKE THIS TOO LONG - BUT HERE IS WHAT HAPPENED.
I HAD A DIAGNOSTIC MAMMOGRAM, ULTRASOUND, BOTH CLEAR - NOTHING IN THE TISSUES.
DR. VISIT THE 29th. HE SAID MY BREAST SHOWS NO CHARACTERISTICS OF IBC OR RECURRENCE. THEN, HE SAID, "I AM NOT GOD - SO I AM GOING TO DO A SKIN AND PUNCH BIOPSY."
HE SAYS HE HAS BEEN DOING THIS AND DEALING WITH ALL KINDS OF BC FOR 30 YEARS - HAS SEEN LOTS OF IBC AND THIS IS NOT IBC.
HE THINKS IT ALL STEMS FROM THE TRAUMA I GOT TO MY BREAST IN NOVEMBER AND THE RADIATION TO MY BREAST. IN MOST PEOPLE THE RADIATION GETS OUT OF THE BODY IN MONTHS AND WITH OTHERS IT TAKES YEARS. MY BREAST NEVER WENT DOWN AFTER RADS. HE SAYS THERE IS SOMETHING WITH THE FAT IN MY BODY THAT DEALS WITH TRAUMA DIFFERENTLY THAN MOST, AND THAT IS WHY MY BREAST IS PINKISH/BRUSIED, ETC.
HE REASSURED ME OVER AND OVER THAT IT IS NEITHER IBC OR RECURRENCE.
I GO BACK IN MARCH FOR THE STITCH TO BE REMOVED BUT WILL GET THE RESULTS OF THE BIOPSY EITHER THE 4th OR 5th.
I'M FEELING A LITTLE BETTER ABOUT IT --- FOR THE TIME BEING -- AND I ASKED ALL THE QUESTIONS YOU LADIES SUGGESTED AND HE ANSWERED EVERY ONE.
I ASKED IF HE IS SO SURE WHY DO THE BIOPSY AND HE ANSWERED AGAIN THAT HE IS NOT GOD AND DOES NOT TAKE ANY CHANCES.
THANKS LADIES AND I WILL UPDATE AGAIN WHEN I FIND OUT THE RESULTS.
JOAN
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HELLO ALL!
I STARTED OUT POSTING ON THIS THREAD -- SO I GUESS I WILL POST THE RESULTS OF THE BIOPSY HERE, TOO, (BECAUSE I AM NOT SURE WHERE TO PUT THIS)
I SAID I WOULD POST THE RESULTS OF MY BIOPSY. THE REPORT SAID, "WE DO NOT SEE ANY CANCER." THE REPORT WENT ON TO LIST SUPERFICIAL AND DEEP INFLAMATION WITH TISSUE EDEMA AND THEY ARE SENDING IT TO CLEVELAND CLINIC FOR FURTHER TESTING.
DR. OFFICE ASSURED ME IF IT WAS IBC OUR LAB WOULD HAVE AND COULD HAVE KNOWN IT. SHE SAID THEY DID NOT TELL THEM ABOUT THE TRAUMA TO MY BREAST AND JUST PUT PAST BC HISTORY, SO THEY WOULD BE VERY CAREFUL WITH IT.
THE DR. STILL THINKS ALL THE PROBLEMS ARE FROM RADIATION/FLUID/ AND THE TRAUMA.
IT WILL BE ANOTHER WEEK UNTIL WE HEAR FROM CLEVELAND.
IF ANYONE HAS ANY THOUGHTS - I WILL BE WATCHING.
THANKS,
JOAN
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HELLO ALL!
I STARTED OUT POSTING ON THIS THREAD -- SO I GUESS I WILL POST THE RESULTS OF THE BIOPSY HERE, TOO, (BECAUSE I AM NOT SURE WHERE TO PUT THIS)
I SAID I WOULD POST THE RESULTS OF MY BIOPSY. THE REPORT SAID, "WE DO NOT SEE ANY CANCER." THE REPORT WENT ON TO LIST SUPERFICIAL AND DEEP INFLAMATION WITH TISSUE EDEMA AND THEY ARE SENDING IT TO CLEVELAND CLINIC FOR FURTHER TESTING.
DR. OFFICE ASSURED ME IF IT WAS IBC OUR LAB WOULD HAVE AND COULD HAVE KNOWN IT. SHE SAID THEY DID NOT TELL THEM ABOUT THE TRAUMA TO MY BREAST AND JUST PUT PAST BC HISTORY, SO THEY WOULD BE VERY CAREFUL WITH IT.
THE DR. STILL THINKS ALL THE PROBLEMS ARE FROM RADIATION/FLUID/ AND THE TRAUMA.
IT WILL BE ANOTHER WEEK UNTIL WE HEAR FROM CLEVELAND.
IF ANYONE HAS ANY THOUGHTS - I WILL BE WATCHING.
THANKS,
JOAN
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Joan, that is great news. I think they would have been able to see the abnormal cancer cell mutations if it had been IBC. And they are going to send it to another facility to test so you will have a second opinion as well. I think it is very reasonable that it could be from the radiation or even a skin infection of some type.
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THANKS "ALWAYS HOPE",
I SO APPRECIATE YOUR ANSWER AND I LOVE YOUR VERSE.
I AM A BELIEVER AND THERE IS NO WAY I COULD MAKE IT THROUGH THIS JOURNEY WITHOUT THAT HOPE!
GOD BLESS,
JOAN
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That is such great news Joan!! I am happy and relieved for you.
Big Hugs,
Lexi
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LADIES,
SINCE I POSTED ALL THE OTHER ON HERE I WILL UPDATE YOU HERE, ALSO.
THE CLEVELAND CLINIC REPORT CAME BACK NO EVIDENCE OF CANCER -- THE WHOLE THING TURNS OUT TO BE LYMPHEDEMA DUE TO RADIATION + THE TRAUMA TO THE BREAST.
THANKS LADIES --- AND I WILL BE WATCHING TO SEE IF THERE IS EVER ANY QUESTIONS I CAN ANSWER FOR ANY OF YOU.... I WOULD HOPE I CAN HELP SOME OTHERS.
MOST OF ALL -- THANK GOD!
JOANE
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Hello ladies,
I had a visit today with my onc. and I will be starting tamoxifen today. My hormone levels came back looking like I was menopausal, so an AI may have been the choice, but I feel like I am going to have my period again. Dr. did not want to risk that some people swing back out of menopause after chemo throwing you in so it is tamoxifen for now. I know I will see an AI at some point as we are going to monitor the estradiol levels for awhile.
I think of all of you often and wonder how you are all doing. Sunnee you are ahead of me on this path, hope it is a bright one. Annette, hang in there, every day you are closer to being finished. Lexi,shrink and alwayshope, hope all is well with you. Kim, please keep us posted how you are doing in Texas, stay stong. Shelley, hope things are going better for you since our last posts. They are for me but it is a roller coaster.Take care.
Diane
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Joan:
I am so glade to hear that all of your pathologies came back negative!!!
Hugs
Laura
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Hi, it's Annette (ty)
Just wanted to give everyone an update. Since I last posted, I had my CT Scan done and they found 3 small spots along my spine with the largest area being the size of a pea. I am er-/pr-, her2- (not sure what all of that means but my onc said it was good). I had my first chemo last Tuesday (TAC) and have already noticed a difference. The redness is gone, some of the firmness is gone and I can actually get comfortable in bed again. Is it normal to see a change that fast?
I am feeling good, just watching my temperature like a hawk this week and getting ready for round two.
Bye for now, Ty
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Joane- thank you so much for the update. I am thrilled for you that it isn't IBC, and I am so glad that you were persistent and able to figure out what was going on with you. Take care of yourself!!!!
Annette-It was good to hear from you. I am sorry that they found some spots, but I am sure you will have a great response. I started Taxol and Herceptin and I noticed within weeks that the swelling of my breast went down, the discoloration also faded. After 3 months of chemo, my breast looked almost normal again. Let us know how chemo goes, and don't hesitate to ask if you have any questions.0 -
Hi Ladies,
Just checking in. Joan, glad that everything turned out great. It is wonderful news. Annette, sorry that you did not get an all clear report but know that you are getting great treatment and like sunnee says, I know you will have a great response. The TAC took only one treatment on me to return to normal.
Sunnee, look at you on that beach. It looks wonderful. Did your entire family head to Puerto Rico or just with the hubby? It looks like you are sporting a cute hair style too. So, have you started tamoxifen yet? I have 4 pills down so far and no big SE yet. Here is crossing everything that we can just take it without SE.
Hello to everyone else. Think spring !!!
Diane
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Thanks Diane,
Just my husband and I went to Puerto Rico. He had served a church mission there a couple of years before we were married, and had always told me how beautiful it was there and that he would take me there someday. Getting cancer has made those "somedays" into "todays". Grandma stayed with the kids. My hair is so curly, and it is a different color, but I am really liking it. I am just so grateful to have enough hair that it looks like an intentional hair-do instead of a cancer patient hair-do.
I had an ooph and hysterectomy at the same time as my mastectomy, so I am on an AI Aromasin instead of tamoxifen. I like a 90 year old woman with achy joints and so tired. I guess it is better than cancer growing though.
Hope everyone else is doing okay.0 -
Hi ladies,
I wanted to thank all of you for posting your stories. My mother was recently diagnosed with stage III IBC with lymph node involvement four weeks ago and began chemo two weeks ago. Needless to say, our heads have been spinning since then. It is so hard to find much positive news about IBC, but coming here and reading all of your stories gives me so much hope for my mom. Right now she is very depressed since she has gone from a very active 62 year old chasing after her grandkids and remodeling a home to being tired all the time from her tx. I was really beginning to feel hopeless but then I found all of you and I want you all to know that you are my angels. Now I see that my mom can survive this and live life after it as all of you are doing right now. I cannot express how grateful that makes me to all of you. I will keep all of you in my thoughts and prayers and please know how grateful I am to all of you.
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Hello everyone,
My name is Divine. (that's from my parents not me) ...I am thankful for all of u posting your IBC stories
.....Thank you! I am just getting to the point now, to hear others stories and find support and strength from all of your courage. I am praying for all of you.
I believe that, we CAN ALL BEAT THIS! I am 32 years old and was told on August 9, 2007, that I have IBC, stage 4. It has been an interesting, emotional journey so far...and one that I am determined to have a positive attitude & "enjoy every day" and "be happy no matter what" Please visit my website to hear my full detailed story and sign in my guest book there, it would make me so happy to see new IBC sisters & friends joining me there. Keep' keeping on...stay strong and positive live by faith one day @ a time.....and thank u again for this site I just found....I will be back.
Read the latest update now by using this link: http://www.caringbridge.org/visit/divineintervention
peace & love,
Divine
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Divine,
welcome to the site. It is nice to "meet" you. I checked out your site. very inspiring!! I am so sorry that you are having to deal with breast cancer and also with being separated from your dear husband.
Anyway, I just wanted to say welcome!0 -
sunneedazee....
thank u for welcoming me and thank u for checking out my story. U made me happy. How r u feeling? i hope u r hanging in there. U r so young....and did i see u have 5 kids!?! wow, how do it? U r an inspration to me. I will be praying for you and I send u lots of H E A L I N G thoughts.....hang in there!
peace,
Divine
ps...thank u ...i think its so great u started this page...with sharing ibc stories...it is nice to know we are not alone....we are going to BEAT this...Stay positive, sweetheart! b happy no matter what!
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sunneedazee....
i just read a little more about u! u are doing great! I AM SO PROUD OF U!!! When were you 1st diangnosed? u had chemo, then surgery? then rad? did u have reconstruction? I am scared of all of that. I am doing chemo now...waiting to hear the ok to go a head with surgery (take both breasts and lymphs on my left side) ....I am sorry, I am new @ all this....
i understand...you have no cancer in you now? That's amazing. Is that what I can exspect after this whole process? & how's that work Stage 4....do they change that after dx, you r doing better? I guess, I don't understand....stage 4 seems so scarey to me. and the fist doctors I had were not so hopeful. Thank God i have a more knowlegeable doctor now, who is hopeful. I am H O P E F U L....was surgery painful? tell me the down low of your journey...I appreciate your time. I have to admit, I am scared....i seem to feel so good right now, (thank God) ...and the idea of surgery scares me right now. Thank u!!!!!!!!!!!!!
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Hi Ladies...
I've been perusing this thread for a while...A bit of my story:
As per one doc, I had 2 years left. That was a year ago.
I've had IBC since 2001 (currently Stage III) and am still maintaining. I have had no surgeries, no radiation, no chemo - tried Tamox and Arimedex, currently on Aromasin.
I had a mammogram that was misread (the cancer was missed), was told I had ovarian, lung, uterine, liver, kidney, pancreatic, and - oh ya: breast cancer - both breasts, two different types. One doc was kind enough to tell me that if I didn't do as I was told, I would get brain cancer too.
The last CT scan came back as "mastectomy scaring present", but no mention of any evidence of cancer. Hmmm...
Local docs have no clue, so I travel approx. 450 miles (one way) twice a year to see an onc I sort of trust.
Somehow, I have survived and I seem to be be playing "stump the doc" - for no one seems to be able to tell me much of anything.
As I read this conversation, I admire you all, am envious of the knowledge you have, and what your doctors share with you.
Best of luck to all of you.
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codylynn
r u on pain? how do u feel? that is amazing ...what a survivor u are!!!! for 7 years scince you have been diagnoised and no treatment? I envy you? what are you doing...what exactly is Aromasin? did you have a major life syle change...i am very curious what do u think is your main motivation to keep going like u are is?...good for u....wish u the best!0 -
MRS_X...thank u for welcoming me...i just saw that now:) and thank u for your heart felt words...after looking at my story. I appreciate your comment. hope u r doing good? 0
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i think some body changed thier name and confussed me for a minute 0
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Divine:
Aromasin is an aromatase inhibitor...supposed to stop the estrogen from "feeding" the cancer as I am ER+/PR+. It's a small white pill I'm supposed to take every day. As a side effect, it has caused terrible joint and muscle pain - enough that I'm loosing my ability to walk - so I take it about every 3 days. I have been told that the IBC I have is slow growing and they don't know why.
No major life-style change - other than having to quit work and have quit doing most activities I enjoy due to the amount of pain.
Main motivation? I'm just an ol' cantankerous ranch woman who is determined to contribute what I can to this ranch operation. And I'm cantankerous enough to NOT do every test and procedure a doctor suggests - just because he or she doesn't know what else to do.
For me, that seems to be working.
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Hi All,
New to the board though have been reading for the past few days.
Brief intro: On 4/7/08 our 32 yr old daughter-in-law was diagnosed with "regular" breast cancer during a routine prenatal visit. She had found a "lump" mentioned it to her OB and things took off very quickly from there. Being pregnant and being diagnosed with breast cancer was, as you can imagine, complete shock. Though once we all were able to "wrap our brains" around this diagnosis, we all were very positive and very hopeful.
Fast forward to this past Tuesday, 4/15/08, the day the that our DIL and son were told that while she does have a lump (golf ball size, can't remember the exact measurement right this monment), the "rash" that was once thought to be from her needle bio was in fact IBC.
Once again things have moved quickly this week. They had to make decisions that no couple should ever have to, to terminate their pregnancy at 17 weeks in order for all the needed tests (CT and bone scan) to be preformed. Thursday (4/17/08) surg. was preformed & on Fri. began the series of scans.
We won't have the results of either scans, her hormone receptor or HER2 until Tuesday when they meet with her Dr. Also scheduled for Tuesday is her first round of chemo. As of now we've been told it will consist of the following:Cytoxan, Adriamycin & Fluorouracil. Of course all is subject to change, as it has so rapidly over the past 2 weeks.
My question to all of "you" is can you point "us" in the right direction for more information on not only IBC (we've gone to the various IBC sites, though do you find one "better" than another) and also point us in the best direction possible about hormone receptors (what is a "good" vs "bad" number- thought I had that straight though now I'm confused!) and also info on HER2. I'm "thinking" HER2- is the "better".. though I could be way off base.
Sorry for such a long "intro"! Thank you so much in advance.
PS- After 3 opinions, they've decided to have treatment & surg. at Stanford in Palo Alto, CA. Her MD is in contact with a colleague of his at MD Anderson & they concurred this to be the best course of action at this time.
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Estrogen and progestrone (ER/PR) positive tumors are "good" in that the patient can be treated after chemo., surgery and radiation for many years to fend off recurrence. Herceptin for HER2 + tumors is prescribed for others. However, HER2+ tumors are thought to be somewhat more aggressive than HER- tumors. In short, those who have all negative tumors have no treatment to look forward to following chemo., surgery and radiation as of this date. I had an estrogen positive tumor (95%) and was negative for PR and HER2 so I am taking Arimidex (an estrogen blocker) for the next 5 years.
I am so, so sorry that you all are going through this terrible whirlwind. Please let us know what is happening.
I frequent ibcsupport.org for most of my information.
Hugs to you all.
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Oh Claudia, first I am sorry that your DIL is dealing with this horrible disease and was faced with an awful decision.
I don't know which is the "better" diagnosis. Hormone pos/neg or her2+. Mine was fueled by the her2 gene going wacky and I was treated with herceptin. Typically her 2+ is more aggresive. Herceptin has changed the prognosis for the better. It is still very serious, but I want to offer hope to your DIL.
Whatever her receptor status is, pleas elet her know that this is a terrific place to come for info. I don't frequent any other IBC specific sites to regularly, nut I know some of the other ladies should have some good suggestions. They have truly been my lifeline.
Hugs and Prayers,
Lexi
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Hi everyone,
I have written before about how inspirational you all are. I will share my IBC story with you-but it is not mine, it is my mother's.
My mother is a very active 62 year old grandmom who was always relatively healthy. In the beginning of Feb '08 my mother felt a "tenderness" under her armpit. She had just recently changed bras and thought that was the cause. A few days later a rash broke out across the top of her left breast. The rash were like hives but didn't really hurt or itch. She treid a few over the coutner treatments for about a week before she began noticing that the lymph nodes right above her left breast were swelling. Her left breast also began to swell and become very red and hot. In a few days the nodes in her neck were also swollen. She went to see my ob/gyn (my mother hasn't been to any sort of dr in about 15 years). The ob/gyn said maybe it might be shingles and sent her to a dermatologist who did a biopsy of the rash and put my mom on a course of antibiotics. The day before my mom was to find out the results of her biopsy my ob/gyn called me (my mom has me listed on her HIPPA) to tell me that she didn't think it was shingles-she suspected IBC and that it would be pretty advanced. So the next day when I went to my parent's house and saw the look on their faces in knew what the results were. That was Feb 28, 2008. I called my ob/gyn right away who then scheduled us an appointment with the leading breast surgeon at her hospital. A mamogram was done that confimred the IBC diagnosis. My mom was sent to the oncologist right away and had all of her tests and screens done the next day. The following Monday we got the results of those-an aggressive localized spread to the lymph nodes under both arms, above the clavical and some in the abdomen were reacting as well, plus the skin spread. But all of the other organs were clear. Thank God for my ob/gyn suspecting IBC right away. I feel she has given us more time with my mom b/c of her quick reaction since it was caught early. She was classified her at stage IIIB, other drs have put her at stage 4. They said that she was triple negative for all the hormone receptors. She began chemo the next week-on March 12th.
She does a 3 week cycle of Taxol and Gemzar-a combo of both the first week, just Gemzar the next week and a week off. She is beginning her fourth round tomorrow-10 weeks now. So far the cancer is respondning very well to the chemo. Every dr appointment we have he says how he is "very pleased" with how much the nodes and the breast are shrinking. Even though she is doing well my brothers and I insisted she get a second opinion at one of the leading cancer centers in Philly. We met with the top breast surgeon and oncologist there who both were very positive about her prognosis. The oncologist told her that she will be facing years of chemo and other targeted therapies hopefully with long breaks in between. She heard treament for years,which I can imagine is a hard and daunting thing to hear, but my father and I hear the doctor talk about her life in "years" and not periods of time. That is hope I am grasping with both of my hands and I am not letting go. This dr said that he would be doing the same exact course of treatment she is doing now but when the time comes that a change needs to be made she needs to consult with them again. He also said that their lab found that she was "slightly ER+" and that he would like to try a hormone treatment as well. But right now we are at the "wait and see" stage of IBC. They can't really tell us what comes next b/c they don't really know. She had more scans done last week and we will get those results tomorrow. Hopefully we will continue to hear more good news.
The reason I was inspired to share my mom's story today was b/c today-on Mother's Day-we did the Susan Komen Race for the Cure in Philly. My mother, who has never walked any sort of long distance-walked a 5K walk surrounded by all the women in our family, sister-in-laws, daughters, daughter-in-laws and neices. She was the first in our group to finish and hand in her ticket. To see the determination on my mother's face that she was going to get to that finish line showed me that she sees the finish line at the end of this, the race for her life. And she will finish it as a survivor.
Thank you all for listening and please know that you are all in my thoughts and prayers. Stay strong and hopeful!
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Hi! I am sister #4. I am the go to person for my oldest sister with IBC. My sister just finished chemo and she just had her mastectomy 2 weeks ago and elected to have a bilateral mastectomy. We have been thrown for a loop! IBC was also in the other breast. We are scheduled for our 1st PET scan tomorrow and to see a breast oncologist next week. The oncologist we have been seeing states this is very rare and we must consider the cancer has spread from elsewhere. My sister had a lumpectomy 7 or 8 yrs ago. We have no other hx of breast cancer in our family that we know of. Any comments or information would be greatly appreciated. Please pray for us.
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I am writing this because my mom was dianosied with IBC on Feb 20, 2008. It came as a shock to us and to her. Some days we deal ok with it, and some days we don't.
It all started back in January of 08, she found a hard spot on her breast. Her last mamogram in April of 07 came back fine. So when she found this lump we were concerned. She went to our primary care physician for an evaluations. He sent her to get another mamogram, then an ultra sound. Then we contacted a surgeon to get a biospy down. Her breast was changing colors and get hard and swelled.
After the biospy came back on the skin as negative, we had to try something else. They did a deeper cut to test further into the breast. This biospy came back positive. The day after her birthday she was diagnosied with IBC and told her pace maker battery has two week left before it went dead. It just wasn't her day. When the doctor confirmed the diagnosis she was shell shocked. She started to hyperventilate. We got her calmed down enough to go see our PCP. We just love our doctor, he took time out of his busy schedule to see her. He gave her some anxiety medicine to calm her nerves.
Two weeks to the day she had surgery to get her pace maker changed from her left side to her right side and a pic line put in.
They had to put her pic line under her right arm. This is one of the worst places to put, not the worst but close.
She always feels cold and sleepy. Her breast was getting bigger and bigger. It started to swell underneath her armpit too. The nipple is dry and hard. She took the temperature of the breast and it read 100 degrees. Her spirits are on a roller coaster.
Three weeks after her diagnosis she started chemotherapy. Walking into that hospital was the scariest thing I had to do. I know it was for her too. Our biggest worry is that we just lost my aunt from cancer a year ago in Febrary of 07. Now my mom has IBC.
What is the biggest struggles for you having IBC? What do you expect a family member to do? What can help you out the most during this time? If you could give her any suggestion what would it be? I am looking for any information that helped you or what didn't help you, so I can help my mom. I am so sorry this is happening to you and your family. My thoughts and prays are with you through this time.
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I sit here crying as I read all your posts and all that you guys have been through. My mom has just been diagnoised with stage 4 IBC,
the doctor told us it looks grim (I hate that word) she is still waiting to see an oncoligist and is supposed to start chemo right away. I don't know if it has spread anywhere as of yet because they still have to do further tests we got the results after a biopsy.I don't know if it has spread to any organs or to the bones, he did say it has hit her lymphatic system how may lymph nodes are involved we don't know. We got the bad news on thursday May 22 2008, today is Saturday May 24 2008. I called yesterday to see if they had scheduled an appontment for her but the office was closed, i will call again first thing Monday morning. I feel so lost and confussed and scared. don't know what to expect, whats next all I can think of is that word that I hate .......GRIM0
