inflammatory bc

mssue

Hey everybody,
I haven't been on here and posted in quiet some time...Alot of new ladies here so None of U remember me,but I know there is alot of support here for everyone...Any way I have a few things to pass around and would really value some input especially on my last sentence. 1st January was 4 years from my last treatment I have an appointment to see the onocologist Feb.8-
I also did some genetic testing back in 06,well the brca1 gene came back negative but the brca2 was off, they said they didn't have enough people with the same results in order to make a sound decision,well I got a phone call about a month ago...yep U guessed it they are leaning toward a positive with everything research including my family history. But really ,it does is give me more options,U know preventative surgeries and such...remove the other breast or have a hysterectomy--please I don't mean to sound too casual about it lol I kinda like keeping my body parts to my self.
Gotta find humor somewhere!!!
That appointment is the 31st of this month... But what really prompted me this morning to write in was that upon waking this morning I had this burning sensation underneath my breast. The first thing to go through my mind was inflammatory bc ,I thought that's crazy but yet the burning continued.So when I got up I went into the bathroom and looked at the site of irritation,it was about the size of a tangerine. Hummm I put some ointment with aloe vera on it but it is still burning and starting to look a little thicker..I know what crossed my mind this morning--but that is not the path I want to go down*I am trying not to worry about it,I have an appt in a couple of weeks but if this persist I will find someoneto look at it for me...Any input out there? Thanks-Big Hugs to All!

Sue

3cbrca

Welcome back
Go to the doctor on Monday and insist that someone see you- I only know a little about IBC but with your history, genes and symptoms and the course of IBC you shouldn't delay. That said - glad you came back.

I'm a big supporter of genetic testing. In addition to my Breast Cancer I have a genetic type of colon cancer - getting my sibs in right away saved my younger brothers life (they caught it at Stage II) and another brother got a bunch of tubular villous (sure to turn to cancer) polyps removed. Its now showing up as precancerous adenomas in a few of my nephews and nieces and they are able to get them removed before they have to loose body parts - some may soon have to consider prophylactic colectomy. My brother and I both lost our entire colon to prevent recurrance and its tough but significantly reduces the risk of recurrance. As they say - it beats the alternative. We can learn to live with anything (somedays kicking and screaming) but we can learn.

Best of luck and let us know what happens.
Sheilah

cruf

Hi Sue! I remember you! I've been here since 2000! I don't know much about IBC but if you have concerns, PLEASE don't wait a few weeks. Hopefully it is nothing but you will feel better once checked out. If it is something, you will take care of it immediately and hopefully all will be ok. Take care and please keep us informed. HUGS!! Cathy

manna1qd

I recently had a red and orange peel looking area on my breast. I went to my surgeon to have it checked, just like a would a lump. I was concerned about ibc too but he said he didn't think it was because ibc is thicker, warm etc. This was not something I had ever seen in my breast so I didn't want to mess around. I got a second opinion. That doc was also pretty sure it
wasn't ibc but got a biopsy for me. Negative. He also explained that the axillary lymph nodes I had removed earlier in the year may have caused a lymph drainage shift, leading to the inflammation. I am highly suspicious of anything I have never had before. My number one surgeon has always been correct and if I ask, he will do things for my peace of mind. I decided on the second opinion for other reasons.

KathiM

I know you, dearheart...been here since 2005....lol!

A note about the genetic testing: I have a friend who is BRCA1 AND BRCA2 positive, and she has decided to keep her breasts, opting for a lumpectomy on both breasts (she has one positive, one negative). She did, however, decide to have a hysterectomy (total). Partly because she didn't need it anymore, but partly because she wouldn't have as much indication if something turned cancerous there.

As far as IBC. Yes, you are wise to be concerned. February 8 is right around the corner, but, what I suggest is that you call them on Monday and explain what is going on...they may be able to squeeze you in sooner. I had a scare with it....I was put on antibiotics to see if it was cellulitis. Turned out to be neither...just a wierd form of lymphodema that only affected the breast itself. I always try to keep myself calm, but I never play doctor...lol....if it is bothering me, I call the experts....

I have my first 6-month (up till now, it was 3-month intervals) checkup at the end of February...I'm pretty confident it will be ok, but if something came up, I would call....

Please keep us posted!

Hugs, Kathi

Unknown

Sue if I were you I would not wait till your next appt. on the 8th. I think you should call and get in to see whoever can fit you in-preferably an oncologist. I don't mean to scare you, but better safe than sorry. If it is a recurrence, you don't want to give it even one extra day to grow. I am praying that all will turn out ok. Hang in there, hugs, Eileen

survivor51

So glad you are posting. It sounds to me that you should go ahead and bit the bullet and call your oncologist. They should be able to see you quickly. It is easier to deal with what ever news you get. It might be something simple but it might not. Either way, by waiting several weeks, you won't sleep well. Having info in hand helps for good decissions. Try putting a hand damp handtowel in the microwave. Place over the breast and let the moist heat see if that helps. If you have someone to help, have them keep bringing you to continue about 30 minutes. Or if that doesn't seem possible, take a good hot shower. Allow it to run on the breast. Use some soap to smoothly massage.

krisrey

Hi Sue,
Like you, I have not been on this site in ages. But I remember you!!! How is your sister doing?
I don't really know what prompted me to get online today, but I am glad I did!
I am sorry to hear about your recent problem, unfortunately I don't have any IBC information for you. If you go on the HER2 support website, they have a link for just IBC, maybe someone there will have some info for you.
Sue, you and I are on the same time frame. I finished my last treatment exactly 4 years ago too! Please let me know how you make out Sue!'
I will be thinking good thoughts!
Kris

mssue

Hey,
Well do I feel dumb or what...well sorta for even saying anything. I have kept an anti itch type ointment on the area and it has pretty much cleared up,although I still called the doctor and they are getting me in on the 5th. I swear this stuff can make U feel like a hypocondriac sometimes. But it is still better to be safe than sorry-I DO know that. I so much appreciate everyones well wishes,support and advice.I recognized a few of U 2. It is so good to hear from all of U...oh and my sister is doing ok. They told her they are not removing the larger port from her abdomen,she will keep it the rest of her life...? I just pray they never have to use it again ya know. Well,I will go for my Cancer Research appt Thursday at 11-I guess I will deal with that as it comes...
Kathi I remember being very glad when I finally got to that extra stretch between appointments-U can finally feel a little bit of freedom.

You are all wonderful,I will let U know how things go and again thank U!

Big Hugs 2 Everyone,Sue