Question about IBC during treatment

Yes, It is possible. I'm not sure how many there are, but quite a few other women on here have had the same thing happen to them. Right during treatment they found out they also were having other symptoms. Come to find out they also had IBC. I'm sure one of them will come along and talk to you. Good Luck.

SSIrish, I would be concerned too, and get another opinion. IBC seems to refuse to conform to the "rules" humans set up for it; it's awfully unpredictable. And when a doctor's answers ("no way") are so definitive, that's (to me) a red flag of not understanding IBC's behavior and quirks.

I didn't have recurrence during treatment but intstead 5 months after chemo ended and 3 months after mastectomy. Doctors very surprised by the speed of recurrence. Now I'm on new chemo and have had good response.

Hang in there,

Kim in Ohio

I replied on your other thread.  It gets a little confusing when you have the same question posted multiple places.  Makes it hard for people who are responding to see what others have written.  Maybe just stick with your other thread and just use that one.  Just my opinion.

Me Her2 and two of my sisters all were diagnosed with bc and doing treatment at the same time. One sister ER is finished her chemo and radiation and now just doing the tamoxifin. The other sister's Her2 came back for the third time and is in her lungs, liver and spine... So if this is IBC this will be another rough blow to our family. It's on both sides of the family. My mom's sister ER and her daughter had Triple negative and two of my dads sisters, two of their daughters and one of her daughters... I'll keep you all posted and thanks for the info!!

My breast hurt so bad that I went to the ER the did a chest Xray and blood work but he said he didn't think it was anything to be concerned with. He did notice the redness, flat nipple and that this breast is much bigger than the other one. He gave me a RX for pain, antibiotics and some anxiety meds to make me sleep. I didn't fill any of them I don't want something for pain I want to know why I have the pain and why give me an antibotic if you don't find anything. He told me to followup with my oncologist in the morning to see if she wants to do a MRI or Ultrasound. SMH...

@ Binney, I do have a lymphedema therapist but she wants to wait until I finish with my surgery.

OK... that's what he said it could be. Thanks Binney!!

Wow, Bon, I'm really sorry to hear about your friends' progression! And I sure do agree with you that checking out concerns about IBC is crucial, though at the moment it's also crucial for Dlia and Racey to get prompt help to avoid systemic infection. Cellulitis can spread rapidly and, left untreated, it's fatal.

You're right that lymphedema is staged, but the stage of lymphedema is not determined by the size of the arm. Most women who develop LE are unlikely to have massive arms even if it's untreated. Usually they swell to a certain point and no further. LE is staged to indicate progression and, just like with BC, those stages are not visible without testing and treatment.

Progression with LE is about tissue damage that is being done INSIDE our bodies because there is stagnant lymph fluid sitting around in the tissues. That lymph fluid sets up an inflammatory response that creates fibrosis and abnormal fat deposits below the skin. With time, if the condition is not treated, the inside tissue hardens, which will eventually lead to loss of arm strength and range of motion, further lymphatic blockage, and finally to changes in skin texture and discoloration, unhealing sores, and leakage of caustic lymph fluid through the pores. Stagnant lymph fluid is also a breeding ground for bacteria, so all of us with lymphedema run a higher risk of serious infection. Proper treatment lowers that risk considerably.

That said, proper treatment can be hard to find, and it sure sounds like your friends have not found it. Here's information you can pass along to them about how to find a well-trained lymphedema therapist near them, what kinds of questions to ask her/him, and what to expect from treatment:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
Any time a woman sees that kind of progression of her disease in spite of her best efforts at self-care, she needs to seek out a second, or even a third opinion. Our doctors are often not tuned into this, so it's up to us to make sure we get the best care possible to avoid the long-term dangers of LE.

It's every woman's choice whether to treat her lymphedema or not, just as we choose whether to treat our BC or not, and which treatments we will or will not accept. We each decide based on our own values and preferences.

But the important thing is that every women should know and understand what it is she's choosing, and with lymphedema, that information is hardly ever spelled out for us.

Be well!
Binney

Dlia, I'm worried 'bout ya! Hope you're being well cared for, getting solid answers, and healing. Please let us know how you are.

Racy, you too -- what news?

Gentle hugs,
Binney

They did a what they called an ultrasound where they just put the thing on literally one spot and said they didnt see anything. The surgeon said if it is anything it will show up on the pathology report. My surgery is on Monday the 19th. 

Thanks Bonnie!! I'm in VA. What is oopho?