IBC DIAGNOSED, LETS SHARE OUR STORIES!
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bettelou, Yes, Praise to the Lord for all his Glorious Gifts and Blessing each day.
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Chaparrita (I love this,,my DM is only 4'9 but one heck of a lady)
Thank you for the positive uplifting news. We need all we can get! Dr's still have not confirmed I have IBC but I know I do. I just had PET scan last Thursday and lights didn't flash like a Xmas tree like last one...staying hopefull..Our life is in our dear Lord's hands and it isn't over until HE says it is..
Bette: I miss your blogs so much. I pray and think about you every day. I continue to pray for your peace and comfort. Love you!
Blessings to all,
Jeannine
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I'm trying to update the past few thread Bette was active on. She passed away last night. What a sad day.
"Dear Friends hi Tom here,it is with sadness in my Heart & great joy for my beloved wife Bette George Dietrick went to her Heavenly reward at !:55 am. Bette was surrounded by Brother Ken George,Rachel her daughter,and her loving husband. When Bette & I married on March 28,2009 we said in our vows to Death us do part. Funeral arrangements are pending(Founds Funeral home,West Chester & interment will be at Green Mount in West Chester,Love all of you who were a part of this journey.Thank you all Bette is at Peace with God."
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My condolences Tom to you and your family. God spead Bette
Hugs
Laura
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I was so sad to hear this news, I will miss her so. Prayers to Tom and her family. Jessica
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Bette's Family-may the Lord comfort you in this time and wrap his loving arms around you.
Chaparrita
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Bette and all of our love ones, will live again!
The earth will be restored to a paradise, and all of our dead love ones
will return to us, so that we can hold them again!
Death, sickness, and old age will be no more!
Revelation 21:3,4
What a wonderful hope, and comfort!
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Beautifully said Paradise. I truly believe those words.
Bette was my 8/08 chemo sister and IBC sis too. I am mourning her ending and remembering her beauty and amazing spirit.
I will never forget you Bette! May you be in the hands of the Lord and all his angels.
Jeannine
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There is a link to a lovely video tribute to Bette posted on the 'Don't postpone joy' thread.
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Hello, my name is Cassie and I will be 20 this April.
This is my cancer story and my strength to all of you...
During the summer of 2007 (17 yrs old) my mother started showing odd symptoms on her left breast. It became intensely red and had a similarity to mastitis. She held off, because she didn't like doctors, and thought not highly of it. But when it was still there a week later she became worried. It was only upon a trip online that she self diagnosed what she had...Inflammatory Breast Cancer. She told me and I cried and hugged her and told her "I'm not ready for you to go Mom...". Well she went to the doctors and she kept getting pushed from physician to physician. One took a punch biopsy of her breast and later told us there was nothing and she shouldn't worry. She was even sent to an Infections Disease Doctor. Well finally after being hooked up on to IV's we noticed no imporovement. Little did we know that as Christmas came and went it would be the last joyous one we would have. Over the holiday our insurance changed so we became covered by the Nevada Cancer Institute. She got worse and in February of 2008 she was officially diagnosed with Stage 4 IBC, in her left breast, lymph system, and in her liver. Our god sent angel doctor Karen Milligan treated her as soon as possible. She was on a hard round of chemo...she couldn't even turn over to get juice on the night stand. If we had gone to our doctor a week later it would have been too late. Summer came and I turned 18...and she seemed to be getting better. We beat the monster back...but the wellness we saw was only short lived. I made Thanksgiving that year...and she was so proud. Chrismas came and went but she started to see spots...and upon another visit to our doctor in February of 2009 we discovered it had spread to her brain. She endured more chemo...and full head radiation...and we stopped it yet again...but not for long...our last summer came...and it attacked her again for the last time. Our doctor who had promised us that when we could fight no more she would tell us now had to fufill this promise. I was now 19.
We put my mother into hospice in the last week of June...on a Monday. On Wednesday evening we noticed that as she slept she looked finally at ease with the pain, and my father and I knew she was not long for the world anymore. Tossing and turning all night brought us into Thursday morning July 2nd, in my pj's I went to get my paycheck from work, not showered not fed...I walked into the room...set my keys down, and turned to be by her side and at that moment...she was gone. Thank god her friend was there with me...that's the most painful phone call I had to make to my father...
My mother was 52, she owned her own business, and was the light of everyone's life...
I want you all to know that even though this cancer is rare and is most fatal, that you have hope. My mother made it two years with this, and set goals, and got to see to most of her goals. Having a positive mindset is what kept her pushing. She had a lot to live for.
Now I check my breasts all the time. My grandmother died of Colon Cancer, my grandfather had melanomas, my cousin had Ovarian Cancer, and my mother died of IBC. And after having mastitis TWICE as a younger girl I know that my health is important to me. I would have not changed a thing if I had to do this all over again. Working full time, going to high school and taking care of my mother.
If you need any support please email me, and don't be afraid. I'm willing to share my hope, strength and knowledge with any and all.
CZnemeth@gmail.com
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Thank you for sharing your story Cassie. I can't imagine how hard that must have been. Much Love! Jessica
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I was diagnosed on July 24th. I started chemo 5 weeks after diagnosis. I went through 4 rounds of AC and 12 weekly taxols finishing 5 weeks ago. I am having a unilateral mastectomy with immediate DIEP reconstruction on Feb 24th. I will have rads after that. Been reading the threads and have gotten some really helpful info.
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So glad so many IBC ladies posted. Thank you. Not many message boards from those with ibc.
My story: diagnosed 6/09 with IBC, stage IV & bone mets. I also had 3.5cm tumor which probably alerted doctors to have me checked right away. I just completed 8 rounds of chemo--3 with adriamyacin, taxotere & cytoxin & 5 with taxotere & cytoxin only. For bone mets, I've been on monthly Zometa infusions. Since I'm done with chemo--I'm doing Lupron shots monthly to push me into menopuase because I wanted to take Femara instead of tamoxofin. Currently unless something else pops up--I'll be on Zometa & Femara. I tolerated chemo well enough; just have a bit of neuropathy which I'm taking B6 & B12 for. Due to stage IV w/ Mets from getgo--Oncologist does not want me to have surgery or radiation--just hormone therapy. Many doctors do not recommend surgery for stage IV patients. I was told due to the mets; I can be treated successfully; but not cured. They will do what they need to do to keep me stable. Since day one--I always look for the positive and have searched and spoken to people with IBC that are survivors for a long time. I pray that all of you become long term survivors. Let me know if you have any questions. I'd be happy to share any information.
Terri
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Hi Terri,
We are practically neighbors. I am having my surgery at CPMC in San Francisco. I am really impressed with the cancer care that I got there. I started out in Santa Rosa but transferred my care to the city when my oncologist left the practice. There was nobody else there that was qualified to treat inflammatory.
I was supposed to be on a Zometa study but they disqualified me at the last minute due to surgery being so close. The study is to see if they can stop patients from getting bone mets. I also broke a rib reaching for a sick cat right before the study. The rib is on my cancer side and lit up on the pet scan but radiologists diagnosed it as a fractured rib. How can they tell a fractured rib from bone mets? I had pretty strong bones and never broke a rib from stretching before. I will have to ask my oncologist about that. Maybe the chemo has weakened my bones.
I am also getting an oopherectomy at the same time but they have not lined up the surgeon yet and I just found out that I have to do a consult with the surgeon before surgery. It's a long drive. The hospital has been very generous with putting me up at a hotel when I am down there. UCSF was my first choice but my HMO would not pay for them so I went with CPMC and am now happy with the choice. The care has been excellent.
After studying the disease and treatment, I did not want reconstruction but since it is still in my skin the surgeon wants to take as much skin as possible. She said that not getting reconstruction is not an option as I would have a big gaping wound that she cannot close. She is also going to do a sentinal node biopsy. I read that it is protocol on inflammatory to do the complete axillary dissection but she feels that I run into the risk of lymphadema and if there is no cancer present it's better to leave well enough alone.
My family is back east and I am picking up my brother and niece from SFO tomorrow night. It will be nice to have the help.
I took Glutamine for perifereal neuropathy and it seemed to help some. I have it in my fingertips(mild) and in the toes of my right foot (mild to moderate at times). I took B6 at the end of my chemo.
Why do you want to take Femora vs. Tamoxifen? I have not read up on that yet.
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Hello ladies, I'm just checking in... Best of luck with your treatments!! Much Love, Jessica
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Hi Black cat,
I researched all the drugs they would be giving me. I'm not sure if there were more heart related problems with tamoxofin than Femara, but I did know I could only be on tamoxofin for 3-5 years tops. With Femara, I could stay on it as long as it's working for me and I should be close to menopause anyway. My Best to you during your surgery. I will be thinking about you. I'm glad they are being cautious about lympedema.
Terri
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I noticed that this thread has been bumped and that it has also been awhile since anyone has posted their story, so I thought I would finally share my story.
My story actually starts in 2009. I have had fibrocystic breast disorder since I was about 17 years old. So lumps that come and go have always been something that I have dealt with. As usually is the case with this, I had a lump appear before a menstrual cycle that was painful in my right breast in the early Summer of 2009, but unlike my previous experiences it was also very inflamed. I had just been laid off from my job a few months earlier and now had no health insurance for the first time in my adult life. The lump didn't go unnoticed but I dismissed it as a fibrocystic cyst as since I didn't have health insurance I wrote it off at the time. The inflammation decreased after my period and the lump remained. So I assumed I was correct about it simply being another cyst.
A few months went by, and the lump was still there. This struck me as a little odd because the fibroids typically dissipate on their own after a little while. I brought it to my boyfriend's attention (who is a nurse and at the time I myself was going to school working on my pre-req classes for nursing) that the lump was still there. We talked about it and since the lump was painful, I had no family history of breast cancer, I was only 33 and I had an 8 year old daughter that I breastfed that the likelihood of it being cancer was very low. So, again, I wrote it off and I still didn't have health insurance.
Well, time progressed and the lump remained. There were no changes to it. It was just there, annoyingly painful with each menstrual cycle and then the pain would subside in between but still painful to pressure. Even though I had that nagging voice in the back of my head, my hands were tied without health insurance and I continued to rationalize that it couldn't be cancer because I didn't fit the usual risk factors. Then about a year after the lump first appearance I started to notice it growing in size.
Now I was terrified, but my hands were still tied. After working for years in the human resources field I knew all about how insurance companies worked and about pre-existing conditions. So I continued a wait and see and pray approach. In a matter of months the tumor grew to a size slightly smaller than a golf ball and a second lump began a bit above the first. My boyfriend and I began discussing options for me to get health insurance so I could get this looked at and we began weighing the option of marriage so that I could get onto his plan. I had been married and divorced before and honestly did not want to get married again. We had both said many times over that we would be happy to live our lives together without that piece of paper, so this was a huge decision for me and required a lot of consideration.
A couple of more months went by and my right breast swelled to twice the size of my left, my nipple inverted and my breast became red and very warm to the touch. I began searching on the internet for anything that matched my symptoms and found IBC. I was so terrified and broke down crying while explaining all of the symptoms to my boyfriend and we decided that we were getting married ASAP. We were married July 19, 2010, I had health insurance August 1st and had my DX August 12th.
When I was first diagnosed, I too went through the usual this looks like an infection process with my family doctor. However, I did have two large palpable masses as well as the classic skin appearance of IBC with the inverted nipple. So in addition to the "here take these antibiotics" I was also scheduled immediately for an ultrasound. I think it helps too that our family physician knows that my husband is a nurse and that at the time I was also in school working on my pre-reqs for nursing. Went in for the ultrasound, and as I was lying there I knew right away that it was bad. Again, I had masses as well. I could slightly see the ultrasound monitor, they used color, and I saw the red flashes of the blood supply going to the tumor. I knew that this was a positive sign for cancer. The ultra sound tech immediately called the hospital's radiologist and advised me that I would need a mammogram ASAP! A couple of days later I was in for the mammogram and I received a call from my PS the next day with the bad news of the results and an immediate referral to a surgeon for biopsy.
As soon as the biopsy results came back I was referred to my oncologist and the day I went in to meet with him I was told I would be starting chemo the very next day. It was all such a whirlwind in the beginning. I was immediately placed on a dose dense course of A/C for 8 weeks to be followed by 12 weeks of weekly Taxol and Herceptin. I had to go for an MRI, PET, MUGA scan, port installation and it felt like I had one appointment or test right after another that first month. Thank goodness for DH, at one of my many appointments (I think it was my first appt with my surgeon) he asked for Xanax for me for anxiety. Lol, I never would have thought to ask for anything like that and boy am I glad he did!
I have now completed both rounds of chemo and I am scheduled for a BMX on Feb. 18th. In the meantime though I still have to have another MRI and PET prior to surgery. I think the new scans actually scare me more than the surgery, the restaging process if you will. So hopefully all goes well and things will continue to proceed according to plan. I apologize for the long post, but I hope that it's helpful to someone else.
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Holly,
Thanks for being the first to post your story here. We need to let others know that quite a few of us have ibc. My story:
I noticed a bug bite that was itchy & my R breast was getting larger than the L and was slightly warmer. I also had a small lump that I could feel on the R breast. I had to wait 3 weeks to see my obgyn. I was nervous and my blood pressure sored. She did not think anything of it but sent me for a mammo & ultrasound that same week. They brought me back the same day for the ultrasound and told me that I had something serious and needed an oncologitst & breast surgeon for biopsy. The biopsy showed ibc & 3.5 cm tumor. I had 8 months (every 3 weeks) of chemo and monthly zometa for bone metastasis that showed on MRI, bone scans & Pet scans. Being stable for a year, my oncologist recommended BMX which I just had last week with recontruction started. The hard part seems to be over and they may look into radiation for lymph nodes that appear larger and are not getting smaller. I'm not too happy about this as I just started reconstruction and don't want to mess with the skin.
This is a very long journey and we are all trying to get our lives back to normal. It is always so nice to hear from long term ibc survivors as ibc is still not much heard of. Best Wishes to all going through the same thing.
Terri
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Terri,
I wish you the best of luck with your reconstruction! I am scheduled for my BMX on February 18th so long as the new MRI and PET scans come back clean. My oncologist has recommended I wait at least 2 year before starting reconstruction because as he put it of the high risk for reoccurance. I'll be honest, I'm not too thrilled with having to wait two years, but I can definitely see waiting until after I complete my rads. At this point I plan to follow his advice, but who knows if all seems to be going well I might opt to begin reconstruction earlier.
In any event, I just wanted to drop you a note to wish you luck with the radiation and the reconstruction!
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Hi Holly,
Thanks for responding. Doing reconstruction at the same time of BMX is more difficult and more painful. I just wanted one less surgery. My PS also recommended waiting, but said he would do it if I wanted it since I have been stable for the last year. Will get my drains out Wed. I'm healing really well. Don't stay on pain meds too long. They made me really loopey all week where Tylenol would have been fine. Even vicodan would be fine at night if you need something a little more. Most people hate the drains, but they did not bother me. My PS does not overfill, so I don't expect to be in much pain for that. We'll see how the implant surgery goes later. Wishing you well with your treatment.
Terri
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I wonder how many of us had this for alot longer than they thought we have. I struggled with fibrocystic breast tissue for YEARS in both breast. I asked the surgeon who drained them on a 3-4 month cycle to send the fluid off to be checked. He would patiently explain each time that a tumor would not have fluid like I had. It was the color of a cup of coffee with 2 creams in it. My breast never really hurt just had tenderness when the cysts got so large. Then, we moved to a bigger city with more access to better health care. Yes, I was still dealing with the cyst. It didn't matter when I ate or drink, they were still there.
I was doing yard work in October 2010. Getting ready for the fall by cleaning off the dead foliage and telling my plants I would see them soon. I felt my breast itch and feel really full. And, after a shower I glanced in a mirror to see why it was so itchy. I thought I had scratched myself or something. I saw a pinkish rash across my right breast and the skin looked funny. It looked like it was someone elses' breast. The nipple was turned in.
I tried not to panic but something inside me knew what it was. I went to my GP for my flu shot and asked him to look at my rashy breast the next day. He took one look at it and said that I either had breast cancer or a reallly bad case of mastitis.
I went to a OBGYN who took one look at it and called to get me into a breast care center. I was scheduled the next day for mammogram, bioposy, and needle punch. I had to call to get my results because someone wrote my number down wrong. Anyway, I found out by phone. I was at work teaching 9th graders. I had stepped out into the hall to talk. I don't know about the rest of the day. It seems to just blur.
I started treatment immediately and was told I had 7 lymph nodes involved and my chance for survival was 10%. I finally got into MD Anderson and was at the admitting clerks desk when she called my insurance and got the OK for me to be in a clinical trial. I took 3-4 oral tykerb pills daily and 3 week intervals for chemo. Life was not fun...
I was going back and forth between MD Anderson and my oncologist close to where I live. When I got to MD Anderson 2 weeks after my diagnosis, I had 17 lymph nodes involved. After 3 months my insurance company called me and denied they OK d the trial. Must have been a error somewhere (yeah-divine intervention). I was blackmailed into getting out of the trial by my insurance company. Healthchoice would not cover anything they did for me they could relate back to the cancer or anything in the future if I stayed in the study. Not much of a choice right?
I came back to my area for the rest of my treatment and had double mastectomy, 43 rounds of rads, and finished Herceptin in Jan 2012. Presently, I am NED. Still and probably always will be dealing with the side effects. Of the 4 nodes removed during the mastectomy, none had cancer.
I apologize for the length of this post. Maybe I should write a book about this someday.I have a tentative date for rebuilding in June this year.
"Don't doubt yourself, there is always someone who will do it for you for free."
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Dear LisaWill, welcome to Breastcanccer.org!
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The Mods
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Hello I was diagnosed September 2017.I am 42 yrs old. I went to ER with what was diagnosed as nerve pain, put on Neurontin for it. I had a rash. MY chest area was red, highly itchy. THe Doctor told me I had shingles, he put me on neuronitn and a steroid. I went back to him in few days, he then told me he thought I had Lupus and that mark on my collarbone was actually a Lupus lesion. He did want to have surgeon come take a look at me though. The surgeon came in took one look at me, turned around and made me an appointment for a Biopsy.
The Biopsy appointment came, my mom went with me. Before he even stuck the needle in my breast he told me what I had. He said its a very aggressive form of breast cancer. He then made an appointment for me to see a oncologist. A week later. But in the meantime I had other tests, I had an echo, a catscan,
What did I do? Well I had a week to sit and wait, so I started doing my own research. Nothing I found was good, or held any kind of hope. I went to my oncologist with my mom, and my sister. The doctor told me that I there was something on my liver but he couldn't say what it was, I also had something in my lung but they were too small to biopsy. He then ordered me to have Pet Scan. I did, that put me in ER as I had fluid in my right lung, and laying down for that long had compressed it. I couldn't quit coughing. It was there at that oncology appt. that I found I was stage 4. The pet scan showed it also moved to my bones (I dont know which bones, all i know is just on the right side)
I started treatment almost right away. The end of September was my first chemo treatment. It consisted of Herceptin,Projeta, carbo platinum,.and Taxal. They also gave me benadryl in my pick line, and I got a cocktail of other medicine through my pick line before the chemo. I came home. For first couple days I felt ok. Then on the third day I had the worst muscle pain, hypersensitivity. I couldn't cover up with anything more than a sheet, i couldn't wear heavy clothes for the next 3 days, Then just before my next drs appt, and chemo I would start to feel better. As the treatments went on, and I had them every week. The side effects started taking a toll on me, I would sleep for many hours a day. Then the diarrhea started. That stayed with me for months. Sending me to the ER about every other day as I was dehydrated,they would rehydrate me and I would go home. I then started drinking Gaterade to combat the loss of electrolytes. I was just treading water there, as they soon bottomed out. Sending me to the hospital in November with what i thought was heart attack . I spent the night in the hospital. They fed me through my IV magnesium, gave me by mouth a total of 4 potassium pills. MY chemo regiment went like this. I would get 3 chemos one week then the herceptin, I would get 2 chemos the next week and the herceptin. I would also every 3 weeks gets a exgevia shot for my bones.This went on till just before Thanksgiving, but after I was in hospital overnight. But i must say the wide spread muscle pain was diminishing, and so was the hypersensitivity. But when those started going away. Here comes new side effects. Mainly Naseua and vomiting. MY WBC would constantly go down. I had to have many neupagin shots to bring it back up, and when my blood count got too low i couldnt have chemo that week. My oncologist then decided to take me off the Projeta and the carbo platinum. Leaving me on just the Herceptin, and the Taxal. I was on that regiment from November till The first part of January.
January I had another CT scan. It showed very little change except the fluid in my lung was less. The oncolgist said he considered that good news as the cancer did not lessen, but it hadnt grown either
He took me off the Taxal in January as it started giving me neuropothy in my hands and feet. I am not just on herceptin, and soon will be on Tamoxofil. Now my bodyis in the process of rebuilding itself from the onslaught it has endured over the last couple months
The rash, the deep heat that was in my chest is gone, my breasts are almost back to normal. Yes they say it is rare for it to affect both, but in my case it did.
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Killthedragon-
Welcome to BCO! Thank you so much for sharing your story here, we're so sorry to hear about what you've been through. We hope you find comfort and support on these boards.
The Mods
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Hello Killthedragon,
I am so sorry to hear about your nasty dragon inside you!
My heart goes out to you, and wish you much hope and healing energy your way.
I often wonder how IBC actually manifests itself.
My right breast had been a little larger than the left, and slowly became larger over a matter of several months. I did breast exams, felt nothing! Had mammo a month later than my scheduled time. The tech during mamo, did an extra squeeze to get a better picture for the radiologist. Was scheduled 1 month from that day of order, 2 weeks later my breast was red grew larger in size and looked bruised. Right underarm quite painful too. After 2 rounds of antibiotics with breast getting worse had MRI rushed.
The results were a large lesion with a smaller one next to it with multiple satellite lesions around my inverted nipple that I had newly acquired, with enlarged lymph nodes under the right arm. Breast surgeon reviewed all mammograms with me, that were all were cloudy, but the cloudiness seemed to get more dense as the years went by. That same day she did a ultrasound guided biopsy, and gave me my devastating news.
She labeled it as a localized,inflammatory breast cancer, and treatment happened lightning fast! Biopsy came back as HER 2 +. PET scan lit up around breast and right underarm!
Port inserted the following week, started A/C x4 then Taxolx4 with Herceptin X 1 year.
5 weeks ago had my BMX (my choice, left was simple mastectomy) with TE reconstruction, lymph node removal right side only. Radiation will follow then the implant exchange afterward.
My pathology after surgery was promising, all was negative of cancer lymph nodes were hard to find almost non existent.
So here is my question, can a lobular cancer become more aggressive from trauma ( mammogram)?In my gut I feel this originally was not aggressive because breast was larger for several months, then after trauma manifested itself by spreading like wildfire. I feel I had aggressive treatment, and it was successful! My breast surgeon was totally surprised by the results, but my oncologist seemed to feel it was expected.
I know we are all different, but more research needs to be done into this disease!
Good news though; a co-worker had diagnosis of IBC 12 years ago, and is still NED to this day, no reoccurrences, did not do Herceptin, but did Tamoxafin for 5 years. I have to do my hormone blocker for 10 years!
I am healing great so far and I try to keep positive through all this.
I am hoping for the rest here...
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Bravenurse, that's a good account of IBC that I can relate to. After a late diagnosis and with classic orange skin inflammation and an inverted nipple, an urgent biopsy confirmed IBC and this meant neo-adjuvant treatment. I couldn't wait for treatment to begin, since breast area went ballistic after the FNA biopsy.
That was all three years ago and despite not achieving pathologic complete response following surgery, I'm NED thank goodness.
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Traveltext,
I am hoping for you 5,10,20 years NED!
BC awareness for men, as well as IBC needs more research as well.
I am a nurse, and I will advocate for those patients that do not get yearly screenings, women
as well as men. One of my nurse friends was assisting a neighbor with dressing changes for his left
mastectomy, she said it was the first for her to take care of that type of patent.
I enjoy this forum, much education, awareness, as well as support.
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My "IBC features" went ballistic too after the trauma of the lumpectomy. At the time I didn't know the significance of the flaming redness; I just thought it was a result of the surgery.
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ok I am concerned. Had Triple Positive IDC diagnosed Jan 2015 / chemo, mastectomy, radiation with reconstruction in May of 2016. Last week on my reconstructed breast I noticed the store line had suddenly become puckered and swelling like edema seemed to be present from reconstructed breast to side, bra is definitely tighter. No redness, no appearance of inflammation. Just to make this more interesting in May I moved to my hometown of 2800 with the closest real quality medical care 170 miles away. I called my oncologists office - over 1200 miles distant now - thinking they would say no big deal. Instead nurse called and said they want me to get into breast surgeon stat! She tells me I really need to check on this bc it might be IBC. Could it be that in a reconstructed breast that is not showing inflammation?
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