IBC DIAGNOSED, LETS SHARE OUR STORIES!
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Angel,
I know what you are feeling and what emotions and fears are going through your mind right now. I was at that place 1 year ago. I was scared that I was going to die, that chemo wouldn't work, and I didn't know how I was going to get through it all with 5 small children. I was stage 4 with mets to bones and lung.
It has been exactly a year since I was diagnosed. I never in wildest hopes and dreams imaginged that I would be doing as well as I am. I still have pain from the bone mets, I still get treatment every 3 weeks, however my cnacer is stable. i survived surgery, chemo, radiation. I am still here, and that was more than I would have hoped for a year ago.
Please know that you and your family are not alone on this journey. There are many wonderful women who travel this road with you, and please let us help you or answer any questions or concerns that you have.
Have hope, be patient. Life will settle down again to a "New Normal". Life will never be the same again, but life can still be good.
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Thank you Mrs x,
You have given me hope when all I can see is doom for my mother, the doctor said her outlook looked grim but they were going to try everything they could she is to start chemo as soon as possible and then remove the breast and then radiation, they still havent done any further testing besides the needle biopsy that confirmed a stage 4 IBC, I an just really scared and at this point we are still waiting to see the oncologist i am not looking forward to that appointment I suppose thats when we will know more I dont know where ithas spread to but the doctor said it has most likely hit the organs the waiting is destroying me inside. I am trying to be strong for her and I will try to continue to do so. I am sure I will have alot of questions after the meeting with the oncoligist, She is on an emergency chemo waiting list. Thank you so much Mrs X for taking the time with me it means more then you know to talk to someone who has been and still going through it and is doing okay. I wish you the best from the bottom of my heart.
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Angel 39 and tinamac,
I wanted to let you both know that I am going through the same experiences with my mom that you are both going through. All the same fears, anxieties and even hope. My mom just finished her 5th round of treatments last week-this makes it 16 weeks now of chemo-and there still is no "end" in sight. And even though the cancer seems to be on the shrink my mom has not been given a light at the end of the tunnel yet. The best advice I can give to you is to stay strong and go to each dr appointment with questions and write all the answers down. I have discovered that at dr appointments my mom shuts down the moment she hears any news she feels is negative and my father only hears the positive. I have to go to be the "in-between" listener. I aggressively ask the dr questions since my parents feel that they are offendning the drs by asking questions, or even getting a second opinion-I think it is a generational thing. I would also suggest that if your mom is too overwhelmed to be her own advocate-my mom was-then you need to be it for her. Insist on second, and even third opinions, if you don't get the answers you want. Search out the best drs in your area and get in to see them right away. And if there are no leading drs who have dealt with IBC then travel to those that have. And the last thing I would suggest is to be there for your father or your mother's husband as much as you can. My father fell apart the day my mom was diagnosed and we all seemed to forget about him-but he is the one who has to deal with the reality of the cancer every day and he is the one who is terrified of loosing the love of his life. He also takes the brunt of my mother's anger at her situation. I had to remember how hard this is for him too.
The last thing I want to tell you is that there is ALWAYS hope. You may not feel very hopeful all the time, and the fears will creep back every now and then-even when you get good news, but there is ALWAYS hope. You are your mother's daughter and she needs you more than ever-you are stronger than you could have ever imagined yourself to be. And through your strength your mother will find hers to go on and not only kick cancer's a**, but live long after it too. Hang in there!
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Mrs Sun: I too think it is important for people with IBC to share their stories because there are so few of us.
Diagnosed with IBC February 2007 stage 3, grade 3, 3/11 nodes.(triple neg)
When my GP saw my breast she sent me for a mamogram and two weeks after that I was on chemo. During chemo my tumour grew to 10cm.
Treatment: FEC-3 treatments, taxotere-3treatments. Bilateral mastectomies (personal choice), radiation(25 treatments)
I had a lot of pain in my chest a couple of weeks ago otherwise all is good.(I have an ultra sound booked for this week; I waited a week before seeing my dr.; silly me)
I wish you all the best with your treatments.
Jacqueline
Ontario, Canada
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Here is the story of my unusual IBC history. I was dx 11/05 with IDC with a very larger tumor (lemon size) in right breast. I was tx with ACT for four months than radical mast due to involvement of nodes, 25 out of 27 positive. Went to rads for 30 hits and one week following completion, I felt cancer in my left breast and can see rash on right chest wall. After biopsy on each side I was dx with triple negative bc now truly inflammatory. Back to chemo again for the second. My doctor is very progressive and in 7/06 I start tx with Gemzar, Carbo and Avastin outside of a trial. I had a response to chemo for the IBC but not solid tumors I left breast. Now I also had a questionable area on my neck area. (turned out later to have been a blood clot from chemos) I was sent to MD Anderson Houston for a consult. (01/07) They put into a Phase I trial (Aroplatinum) that a very much regret and it did not help me only severely hurt my hands and feet with neuropathy to the point I was completely disable for 6 months. I came back to my originally doctor and we decide to do the 2nd mast and watch the neck. (6/07) 2nd mast showed 27 out of 27 cancer. Two month later I had a recurrence on right chest wall up above where my breast was. I did a Phase I trial using a PET scope to locate nodes. (Moffitt Cancer Ctr my 3rd center) Four more nodes came back positive. Total nodes positive now 56. I now had a break from treatment for the next six month I did a total diet change and started treating myself with natural meds. I got my life back for while and felt and looked better than before 16 months of chemo, 3 surgeries and rads. 6/08 saw a rash on right chest wall again. (It has been 2 years since last IBC) Another biopsy and yes it is back again. Within ten days it spread to cover my right chest wall, up to my shoulder and half way down my arm. I also have a solid tumor coming through the skin. Than it jump to left and right side of my neck and cervical area in two weeks. Do to my neuropathy from MD Anderson we had to choose chemo that was not so hard on my hands and feet. So we chose to do Gemzar, Carbo and Avastin again. Boy do I hope this stuff works this time.
Living in hope,
flalady
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Flalady - You've been through hell. I'm praying that this treatment works for you.
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Hi Lexi,
Did you have a mastectomy first? I sort of sounds that way from your post. Sorry.
patti
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Im sorry to hear you have IBC. Yes, its a real nasty form of B/C. I had the common form of B/C back in 2001 but I can tell you that my best friend has been battling IBC for 7 years and she is still going strong!!! She was diagnosed 2 months after marrying a man 15 yrs younger, had 6 mos chemo, rads, double mastectomy, than another 6 mos chemo and rads. She went into remission but a few months later noticed a redness around her clevage. So off she goes to a pcp she never used (her regular pcp was on vacation) who diagnosed "shingles" and gives her meds.........unfortunately, it wasnt that - the IBC was back. Its been an on and off thing with her for the past 6 years.....many diferent chemo cocktails, but with the fantastic oncologist she has and many prayers, shes hanging in there and is determined to beat this. You might have ups and downs along the way, but just remember you can beat this.....get angry at it, dont cry over it.....fight with every inch of strength in your body, get those "claws" out and fight back.....God bless you...please keep everyone here up-to-date on your health - we care!!!!!
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Hey Patti,
Yes, I had a mast first as I was diagnosed with IDC. It wasn't until after my sugery that I received the IBC diagnosis. My tx was 4 A/C, 4 Taxol, and herceptin. I did worry myself wondering if my tx was aggresive enough. Because the tumor was her2 driven, I know that the herceptin was my best defense against this cancer.
I am sorry that your daughter was taken by this horrible disease. Thank you for the work that you are doing. I know that your daughter is proud.
Lexi
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I HAVE BEEN TO OTHER SITES BUT I THINK I NEED TO BE HERE ( UNFORTUNATELY) AND COULD USE A LITTLE HELP UNDERSTANDING ALL THE LINGGO. THIS JUNE I WAS DX: WITH STAGE 3-B BC. + FOR INVOLVEMENT OF DERMAL LYMPHATIC CHANNELS BY DUCTAL CARCINOMA. I HAD MY FIRST TREATMENT OF A/C ON 7-3-08. PORT PLACEMENT (IF MY WBC GOES UP) WILL BE ON 7-25-08 WITH MY 2ed DOSE TO FOLLOW. I AM SCARED TO DEATH OF THIS IBC DX. I NEVER HAD ANY OUTSIDE REDDNESS OR INFLAMATION. BUT AT THE END OF APRIL( FEB-08 WAS MY LAST MAMMOGRAM) MY BREAST STARTED TO DISTORT. I HAVE ALWAYS HAD TROUBLE WITH THIS BREAST(RIGHT SIDE) ALOT OF (CYSTS) THEY HAD ALWAYS SAID!!! SURGERY TO REMOVE ONE THREE YEARS AGO. SO I THOUGHT BETWEEN THE LARGE AMOUNT OF CYSTS AND MAYBE ADHESIONS FROM THE SURGERY IT WAS PULLING ON THAT BREAST AND CAUSING THE DISTORTATION....... I DID MAKE AN APPT. FOR YET A 4th OPINION AND TO MAKE A 3 TO 4 YEAR STORY SHORT THIS IS WHERE I'VE ENDED UP. I HAVE ALWAYS HAD MY MG'S/ SONOGRAMS. YEARLY. THIS SHOULD HAVE NEVER HAPPENED. BUT I'M HERE FOR ALL THE SUPPORT I CAN GET!!!
THANKS AND GOD BLESS TO EVERYONE OF YOU!!!!!
PLAN: CHEMO X 6 MONTHS. SURGERY. RAD. X 6 WEEKS. ??? RECONSTRUCTION ( IF POSSIBLE)
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Morningglory3:
Welcome! I'm sorry that you had to find us. I'm glade that you made an appointment for a 4 opinion asked this doctor that you are going to see if he/she is familiar with IBC. You would be surprised to find out not that many docs are not familiar with this type of bc. Unfortunately IBC does not show up on mammograms. My mammogram came back negative for bc and I had a lump on the outside of my breast. The way that I found out that it was IBC was after I had a biopsy done.
You will get a lot of support here I wish I would have found this site when I was first dx with this beast.
Good luck with your 4th opinion and keep us posted.
Hugs from Michigan
Laura
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LAURA, I SEE YOU WERE DX: IN 2004. HAVE YOU HAD ANY RECURRENCE? I NEVER HAD ANY REDDNESS OR SWELLING. IT STARTED WITH THE DISTOTION OF THE NIPPLE. I WENT ASAP WHEN I SAW THAT CHANGE TAKING PLACE. MY BONE SCANS AND CT SCANS ARE CLEAR. BUT IT IS SO SCARY AS I READ THESE POSTS!!!! IT SURE WOULD BE NICE TO SEE MORE POSTS FROM SURVIVORS OF THIS BC!!! IT IS EVEN MORE SCARY NOT TO SEE MUCH TALK ON THIS SITE........
DX: 6/08, IIIB, ER+/ PR- , HER2- HUGS FROM OHIO!!!! PEGGY
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Peggy:
I have not had any recurrence however I have had some scares. I get sores on my both of my breast I have had the biopsied and they all came back negative. We do not know what is causing this. In December I had my yearly ct scan and it showed swollen lymph nodes in my right arm pit area. This was the side that did not have the cancer. I have had it biopsied and there was no cancer in the cells. However we are watching them carefully to make sure they don't turn cancerous. My onc told me that sometime it turns cancerous and sometime it doesn't. I saw my onc last Thursday for my every three month appointment and everything looks good.
On August 12th it will be three years with NED.
Laura
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I want to thank each and everyone of you for sharing your stories. This thread has viewed thousands of times, and I believe we can make a difference by supporting one another, and by sharing our stories so other women can be more aware.
Morningglory, I am sorry that you have to join us. I am so glad your scans came back clear!
Laura- 3 years, wooohoooo!!!!!!!!!!! You go girl, and just keep on going!!!
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Hi Everyone. My mom is getting her bone scan tomorrow so we will know if this has spread. I am so thankful to have found this site. It is the only time I really feel "safe". All of you have given me strength and I want to thank you for sharing your stories and more importantly successes!!! I just want to get these results and get going with treatment. It has only been 5 days since her diagnosis and it feels like 5 years!!!
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Jadai:
Good Luck tomorrow!! Keeping my fingers cross that the disease has not spread.
Hugs
Laura
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P4U:
Thank you for sharing your story with us. I am so glade that the urgent care doctor that you saw had some knowledge of IBC. What courage you had by walking into the oncology office and requesting an appointment.
Jadai any results yet? keeping your mom in my prays.
Sunneedazee how are you doing?
Hugs
Laura
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This is how Cam and I introduce ourselves to another board. It tells of a two and a half year journey to get a dx.
Let me introdce my wife Cam and her companions
First, her constant compainion Mr & Mrs Tumor, goes by the name of bilateral IBC, they are well developed, (stage 4) their children are axilary nodes and one distant relative, the superclav. (there is a rumor that the other tumor that lives down the block on ovary street is related but we don't think so.) They are not the best companions, they keep spreading red bumping trash outside of their breast home. In fact if truth be known,it's a real negative experience, no triple that, I wish they would just die and go away.
It took a long time to find them for they were a sneeky group. To make sure that no unwanted gangs moved in, Cam would once a year flatten the area and send highpowers rays in to look, when in 05, the area got funny looking and too dense to see well, she began having ultra sonic sound waves looking for them, and every six months she went into a barrel and let people beat on the barrel with a hammer, Oh they could see something, just no one knew what. They knew the area was dense, they knew that there was shadows, and posibably benine spots. Even the shell of the area, the skin was getting thicker and thicker. The thermostat was turned up higher than anyplace else, and it just hurt. Then one day a wise man remembered hearing about a family called IBC that on rare occasions moved in to places just like this. He knew the only way to find them was to punch a hole in an try to catch part of them. So they did, when the wise man became not so wise, he looked at the punch and saw none of the tumor flamily.
Four months later the IBC family decided to remodel, they enlarged one home by 40% painted it purple, and pulled the front porch inside. Then they put up a red banner over the top. A week later they decided that it was still not big enough so the family moved next door and enlarged that and painted it purple. The not so wise man took another look at the earlier punch, and said ooops, they were there all the time.
Cam decided enough is enough, we went south to the Oil lands of TX to seek a famous old Italian(ok not so old) known far and wide as a fighter of IBC. Since feb 08, we hunt the clean margins so the homes can be demolished and all the Tumor family can be killed once and for all. (or at least locked away for long periods)
Hello, i'm Herbie, Cam is wife. Sorry for trying to tell her story this way with bad spelling and puntuation, but I would love to develop some way to have a since of humor about this d**m stuff. Cam and I will read and learn from you.
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Herbie & Cam:
Welcome!!!
I loved the creative way you told Cam's story. I can tell by your posts that you have done a lot of research on this beast.
Keeping you in my prays.
Hugs
Laura
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I am so glad to see that the IBC thread has continued. UPDATE--finished TYKERB and xeloda. Another PET scan and back to the thoracic surgeon. Had a medistinoscopy with positive lymph nodes--so no lung surgery at the present. Next step more chemo--Gemzar with Tykerb or carbo with taxotere. Just found out today and need to make up mind in 2 days. So it is back to the old drawing board. Thanks for everyones support and prayers. God bless.
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Hi everyone -- this is the first time I've posted (but I've looked frequently). It's sad that all of our stories are so similar. I consider IBC to be the unwanted step-child of BC -- it's there, but no one really thinks about it. So my story -- I was officially dx in January 2005. In October '04 when I was taking a shower, I felt something wrong with my left breast -- a thickening under my nipple. I immediately went to my dr. He said he didn't feel anything, even though I pointed to exactly where it was. He sent me for a mammo. That came back negative -- no sign of cancer -- so I thought, O.K., maybe I'm imagining things. My breast then started to become fuller, red, hot, hard, and I had shooting pains from my nipple to my armpit. This was now November and I had an appointment with my Gyn. I mentioned the hardness on my breast, he examined it and said he thought there was something there. I went back to my dr., and at this point he then said yes I can see it. Was sent to a surgeon (now December) and had a biopsy in January. Chemo (TCH) started in February '05 and I finished in July '05. Had a mastectomy in November '05. They biopsied the tissue and couldn't find any sign of cancer in the breast or lymph nodes. Started radiation in February '06. Had reconstructive surgery (DIEP flap) in Dec. '06. I see my onc every three months and I've been NED, and I plan on staying that way and not becoming a statistic! I've had a wonderful support system -- friends and family -- and have met so many wonderful woman through this experience.
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I had my Mam this morning and after I was done the radiologist ordered me to have a ultrasound done but so far heard nothing, I have red /purple markings, nipple area shin is puckered, nipple area burns like a hot poker, area going to my armpit feels rigid, I am afraid I might get the runaround.
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Hi,
Thanks for asking. Sorry I haven't been on. So, with the Leukemia and the IBC, my mom is a medical mystery, so I tell her. The docs are being very cautious and we are STILL testing. We need to be sure that chemo will not harm her already weak marrow. This could lead to paralysis. We finally had the MRI tonight and by Tuesday we will know the plan. The hospital we are working with has a weekly meeting of about 40 oncologists, pathologists, radiologists, etc and together they are all helping to work out a plan for her. They realize the urgency but her case is so unusual they are taking precautions. It is quite the roller coaster and thank you all for your support!
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rosied51 -- Has your doctor talked about Paget's Disease of the Nipple? Some of your symptoms are similar. Paget's Disease accounts for less from 5% of all breast cancers. If you go to Home; Symptoms & Diagnosis; Understanding Breast Cancer -- FAQ -- there's some questions about it. Also www.cancer.gov also has information regarding that. I'm wishing you good news from your ultrasound. If nothing shows up on that how about an MRI. IBC is infamous for not showing up on mammos -- mine didn't -- you will most probably need a biopsy (including skin) to rule out IBC. Wishing only good luck.
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May 28, 2008: Noticed large sore lump in left breast while in shower
May 29, 2008 Saw OB/GYN who also felt lump and sent me for ultrasound and diagnostic mammo. He said "It would be very good news if this is an infection"
June 5, 2008: The radiologist kept asking for more pictures when I went for my tests. I was told to pick up my films and see a breast surgeon ASAP. The mass was solid, with a lot of thickened tissue around it. The breast and a node under my arm were both swollen and warm.
June 12, 2008: Appointment with breast surgeon who did a core needle biopsy in her office. Afterwards, my breast turned purple and large amounts of bloody fluid drained from it for several days.
June 17, 2008 Biopsy results showed IDC, grade 3. Scheduled for bone scan, breast MRI, ultrasound of axillary nodes, chest x-ray. Also appointment with oncologist. AT this time they were ignoring the inflamed appearance of my breast and proceeding on the basis that this was a lump which could be shrunk with neoadjuvant chemo, then removed in a lumpectomy.
June 25 and 30, all of the above tests were performed
July 7, 2008: First appointment with oncologist. Chemo explained. Sent back to breast surgeon. Breast surgeons office calls and reschedules my appointment for August! I get worried and see my PCP, who prescribes antibiotics for the "breast infection". A call to my health insurance revealed that I had the option of going to a major cancer center and they would pay for travel. I was referred to the Avon Foundation Breast Center at the Sidney Kimmel Caner Center at John's Hopkins in Baltimore.
July 30, 2008: Seen by surgical oncologist, medical oncologist and plastic surgeon at Hopkins. Another mammo and ultrasound is performed and it is discovered that the tumor is growing out along the biopsy path, fast approaching the surface of my breast. there is much concern about the inflammation(finally) and IBC is talked about. Given a stronger antibiotic in the hope that it is not IBC. Scheduled for SLNB to check spread to nodes.
August 11, 2008 Sentinel Lymph Node Biopsy. Initial report shows no positive node
August 20, 2008: Final SNLB report is negative. Good news. BUT the inflammation is IBC, and the tumor is now protruding an inch from my breast. Port is placed. Chemo to begin in one week.
August 27, 2008 Begin 4 month course of chemo, 4 AC every two weeks followed by 4 Taxol. I manage to work through the AC, but catch pneumonia and am hospitalized after the first Taxol.
This is were I am now. I got out of the hospital two days ago, and now have to stay home on disability for the duration. One good thing, although my IBC breast is still discolored, it is no longer warm or painful, and the tumor is shrunk to a size where I can only find because I know where it is. My chemo is on hold for the moment due to my illness. Once I am finished, I am scheduled for a mastectomy, no recon, and then RADS
Right now I am discouraged about the SE's of chemo, but encouraged that my breast seems to be responding.
All the time this has been going on, I have been dating a wonderful man, a nurse, who just proposed! So I have a strong motivation to beat this and be a beautiful bride on May 9, 2009.
Bette
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Bette - I'm glad your tumor is responding and that it doesn't appear to have spread. What a wild ride! How wonderful that you have loving support around you. I, too, got married during all of this. You'll be a fabulous bride. As far as the side effects, for me they were minimal. I had some fatigue and didn't feel like eating much. The food tasted strange. I got fairly burned during radiation but it all cleared up about 3 weeks later. Best wishes to you as you travel this road.
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YOU AND I ARE TRAVELING THE SAME ROAD! AT ALMOST THE SAME TIME. I WAS DX: WITH STAGE IIIB / IBC IN JUNE/08. WENT THROUGH ALL THE SAME TESTING. DID FOUR ROUNDS OF A/C. I THOUGHT I WENT THROUGH THAT FAIRLY WELL, CONSIDERING! BUT I ALSO ENDED UP IN THE HOS. AFTER MY FIRST ROUND OF TAXOTERE. TEMP 102.6 WBC'S IN THE TOILET!!!! THAT BOUGHT ME A TICKET FOR 20% REDUCED DOSE. I HAD THAT DOSE ON OCT. 24th. I HAVE FELT LIKE CRAP SINCE. I AM STILL TRYING TO WORK "FULL TIME" BUT ALOT OF DAY'S I HAVE TO LEAVE EARILY. THANK GOD I'M IN THE MEDICAL FEILD AND THE DR. I WORK FOR IS VERY SUPPORTIVE!!!
AND YES!
"Yet in all these things, we are more than conquerers through Him who loved us."Romans 8:37
PEGGY FROM OHIO
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Hi All!!! I haven't seen a post here in a while and hope you are all doing well. My mom had her 1st chemotherapy last Monday and did really well. She said food tasted, and I quote, and I am sure some of you can relate, "like shit" and she was a bit tired but other than that she is feeling much better than expected! She is on cytoxan, taxotere and herceptin. We go tomorow for another herceptin, next week for herceptin and then chemo again. I wanted to ask you all if the chemo side effects stay the same, get worse or better. Just trying to look ahead. Thanks everyone.
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Good luck to your mom. Personally, I found the SEs to be cumulative, especially the fatigue. However, they were all manageable. I probably could have worked throughout if my job didn't involve so much travel.
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Your Mom will probably find the fatigue to be cumulative and in my case, the neulasta shots were random for side effects. Some had major bone pain, especially in the skull and others had nothing. That of course made me worry that I had given myself the shot incorrectly. I had TAC and really felt that I did well with it. Have a PET/CT scheduled for December 11th and am starting the "think positive" dance already. Good luck to your Mom.
Diane
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