Posted on: Mar 21, 2014 08:29PM
anyone else? I thought I saw a board with this title when I first joined but can't find it now.
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Posts 1 - 26 (26 total)
Mar 21, 2014 09:11PM Jules_NY wrote:
thank you but when I go to the link I can't view it. I can only start a new discussion. How do I find it without the link?
Mar 21, 2014 09:13PM Jules_NY wrote:
never mind I found it. For some reason I had it blocked in my settings.....weird
Mar 21, 2014 09:21PM Meadow wrote:
Jules, I know there is a forum to discuss IBC, I have seen it, but I am not very good at navigating around. I am sure we will find it again. I was diagnosed last August with IBC.
what about you?
Mar 21, 2014 09:28PM Jules_NY wrote:
I found it. The whole board was blocked in my settings for some reason. Fixed it now!
Just diagnosed in Feb. 2 chemos down 14 to go. Then surgery and radiation. How are you recovering from your surgery?
Mar 21, 2014 09:43PM Meadow wrote:
Yes I am doing good, my pathology after my mastectomy was clean. no evidence of cancer in 15 lymphs removed and tissue, so I know my chemo worked great. I am in radiation tx now, and I am ready to be done but so thankful to have my cancer so responsive to treatment
Mar 21, 2014 09:46PM Meadow wrote:
I am sorryyou have been diagnosed with this rare and special form of BC, It can be scary but know that good results are ahead for you. Stay positive it makes all the difference....and prayers too
Mar 21, 2014 09:56PM Jules_NY wrote:
thank you so much!!! Crying right now. So glad to hear you are almost done and that you responded so well. I am very hopeful and trying my hardest to stay positive. The breast surgeon and my onc both said that this will very likely be behind me in a year. Just gonna be one terrible year! Still trying to process, having something so aggressive with such a time crunch to treat doesn't really leave any room to take a breath!
Mar 21, 2014 10:13PM Meadow wrote:
you are so welcome! At my first appointment last August my oncologist, who knew I did a lot of reading about my cancer, told me not to be troubled by the dire prognosis of IBC. He said he has had good responses from patients and he expected me to have good responses too. He said the statistics we read about are rapidly changing as IBC is one of the most studied cancers and great strides forward are happening in IBC. I think aggressive chemo, a dose dense treatment plan has been so effective with IBCers. Take heart, you will come out on the other side healthy and strong
Mar 21, 2014 10:26PM Meadow wrote:
I see you have had 2 chemo treatments, which means you are probably sporting a new look without hair. Mine was history after 2 tx. I hope losing your hair is not upsetting you too much. I had good support from loved ones and friends who told me how great I looked.....and it really helped me not be self conscious. I purposefully showed my bald head to people all day long, until I was no longer uncomfortable. I always had a lot of hair, a redhead, and now I dont miss it at all!
Mar 21, 2014 10:37PM - edited Mar 21, 2014 10:40PM by Jules_NY
sitting here scratching my bald noggin as we "speak". I am actually ok with it. I tried to get a wig but I hated all of them. So I got some funky hats and bandanas and I am good to go. I work in a hospital and always put my hair up. So now I just wear scrub caps, which I would do normally but only on occasion. The only problem is I buzzed it to short when it started to fall out. No it feels like I am getting poked in the head by hundreds of needles as it falls out. Especially under my hats and when I move my head on my pillow. Haven't shown anyone but my family yet. But I'm eager to start showing more people!
Has your hair started to grow back, is it different?
Mar 21, 2014 10:44PM Meadow wrote:
Good to hear you are ok with it. yes, I had my last chemo dec 10, and mid feb it was coming back in earnest. today after I showered I said to myself, ok, I am going to have to comb that! it is about an inch. So far much more grey, and softly straight, which is a change. I too wore funky hats and scarves, easy since it was winter too. Do you work in surgery> noticed you have scrub caps in your wardrobe. My spouse is a CRNA
Mar 21, 2014 10:54PM Meadow wrote:
I am happy to chat here any time, I will save it in my favorites. It has been so nice to chat with you, have a great weekend
Mar 22, 2014 06:35PM Jules_NY wrote:
I'm a PA, I work in the NICU and cover the delivery room to care for the baby sometimes. When it's a CSection hi have to wear a scrub cap, so now I just wear one all the time. LOVE the CRNA's at my hospital! Glad to hear you have to start using a comb! Saved this thread too!
Mar 23, 2014 06:19PM Faith316 wrote:
Jules, read my diagnosis history in my signature below. I am still NED (no evidence of disease) for 4-1/2 yrs now after my IBC dx. Have hope. You, too, can get through this!
Mar 24, 2014 07:08PM Jules_NY wrote:
I second the thank you Faith!!!
Mar 28, 2014 03:59AM Jokindley wrote:
. Would you mind if I ask what symptoms you had? I have had a negative mammo, US, and punch biopsy. Im told MRI is next. II have a swollen itchy red left breast with pain. I am also gaining weight despite working out twice a day. About 3 pounds every 2 weeks. MMy gut feeling is I have something quit serious. I can't find any other reason for the swollen breast that keeps getting bigger.
. Jo k.
Mar 28, 2014 10:20AM Jules_NY wrote:
I woke up one morning and my left breast felt engorged, it was hard, slightly itchy, pink around my aeroela, I had dimpling of my skin and my nipple was fixed. Looking back I don't know whether ALL of these symptoms came on completely overnight but I know for sure if they came on gradually it wasn't more than a week. I went to my GYN the next day and she sent me for a mammo/sono that afternoon. Mammo was normal other than skin thickening. Sono showed abnormal areas and an abnormal axillary lymph node on the same side. Based on my symptoms and sono I was told at that point I had a 95% chance of malignancy. Breast biopsy 2 days later confirmed it, and lymph node biopsy a few days later was positive also. I also had a breast MRI, which basically just showed the extent of the tumor.
Do you have a fever? Mastitis is very similar. But less likelyif you are not breast feeding. Or it can be another form of infection. It's good news that those tests you have already had are negative. Cancer cells react differently to the contrast in the MRI so that seems to be the best next step.
Wish you the very best. Waiting is awful!!!!! It honestly was the worst part of a of this for me.
Jun 15, 2014 07:24AM jlingo wrote:
Hi, my name is Jess and I currently have a rash like thing on my left breast. I am new to this forum and hoping to get some useful answers as my doctor has been no help
I have had this rash for almost 3 weeks now. I am currently using a steroid cream that the doctor prescribed me. I have been using this for over a week now and have seen no change. I have never seen anything like this on my skin before and it does not look like your ordinary rash. There are no lumps or bumps just discolouration on the skin kind of like a burnt mark. For the first week or two it was extremely itchy but the itch has now subsided but the rash is still very much visible and there has been no change since using the steroid cream that was prescribed to me. I feel normal, no other lumps or bumps on my breast just this rash like mark that won't go away. I am happy to upload a photo and maybe that will help, especially anyone who has had IBC or anything that may sound along the lines of what I have.
I am very concerned as I have never seen anything like this on my skin before and find it really strange that its just on my left breast.
Thank you guys in advanced!!
Jun 17, 2014 12:28PM Meadow wrote:
Hello jlingo, Jess, nice to meet you. Sorry you are having problems, and hope you get some answers soon. IBC is rare, and many many rashes occur that are not IBC, so take comfort in that. I can only tell you from my own experience how IBC presented, and it is similar to what Jules posted just above. I had itching as my first symptom... no rash, just itchy nipple. then swelling rapidly onset, like if you have breastfed, that full and heavy feeling. My breast was very sore too, but no lump. I did not have a rash, I had orange peel skin under my nipple, it was rough and had striations, and my nipple retracted just a bit. This all happened rapidly, like a week, but I foolishly watched it change for about a month. When I went for an ultrasound, the Doctor met with me after and told me to find a surgeon as she was ordering a biopsy but felt certain it was IBC, which it was.
Do you have pain or other symptoms besides the rash? It is hard to tell someone what I think is happening, only a doctor can diagnose you of course, so if you have concerns that the cream isn't really helping please see your doctor again. Do you have a good breast center close by where you can get checked out? Mammogram is not the best diagnostic test for IBC, an ultrasound is better,but it doesn't always show there clearly either. IBC mimics inflammation thats the "I" part, inflammatory. If you think your breast is inflamed you should be checked.
I hope this helps some, and please let us here know how you are doing. Meadow
Nov 9, 2014 07:09PM Kirkland3998 wrote:
Hi Meadow and company, I am waiting for test results from my punch biopsy. A third of my breast is red and I hAd itching which has past. I saw my GYN. She mentioned IBC a but gave me a topical to try for 2 wks. Nothing changed and I saw my dermatologist she doesn't now what it is and did a punch biopsy. That was 5 days ago and the results should be in any day. It's hard not to think the worst but then again there in no reason to be so negative . I wonder if the disease is quite advanced if you reach the point of orange peel type skin or if everyone is different with symptoms.
Apr 1, 2017 03:13PM - edited Apr 1, 2017 03:16PM by MommyGato3
I'm currently in the stressful state of waiting on biopsy results. I had a core biopsy on my right breast and a few swollen lymph-nodes in the right axillary on 3/29/17.
My symptoms began with what looked like mastitis...redness, swelling, pain & it all started overnight about 2 months ago (Feb 2017). The redness kind of faded after taking the antibiotics but the area that swelled got harder and more pronounced. The last ultrasound showed a 21x17x10 irregular mass & the swollen nodes under my arm with a BI-RAD 4. Oh and the redness returned in the shape of a small circle near nipple & most recently noticed very minor skin changes. When I squeeze my skin a little, it has that orange peel look so I'm worried as I wait.
Has anyone who were diagnosed experienced similar symptoms at the very beginning?
My prayers to all who going through these challenges. I pray for strength for all of us!!
Apr 1, 2017 04:33PM Nel wrote:
waiting sucks....... no way around it. Very similar symptons when DX, now 5.5 years ago. There are many of us doing very well. Typically, chemo, mastectomy, chemo and radiation. A long year or so but doable. If it is IBC, get an onc who has experience. Don't look or don't take to heart the stats you will find on Doc Google. They are typically 5 years or more out of date Things have progressed and many improvements made
Keep us posted
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