Worried about IBC

And my chest hurts above my breast, which is where I told them at A&E that it hurt. I don't know how far up your chest is actually breast tissue. 

Hi Carolyn,

It sounds as though you’re having a horrible time but it’s good that you’ve been looked at and given some medication. Google is NOT a good place to look for info on IBC, which is very rare, probably no more than 2% of breast cancer cases in the UK. You have been given a week of antibiotics which is the standard care for anything that might be a breast infection. If the antibiotics have no effect after a week and the visual symptoms have developed (redness spreading, swelling, itching, breast feeling warm, nipple retracted) the you should certainly go back to your GP who hopefully will have an appointment this time. The other symptoms don’t seem connected with the breast but could be related to the stress you are going through.

Are you having any form of talking therapy as well as the antidepressants? If not that would be something to ask your GP about.

Do come back here later if more symptoms develop but I very much hope you’ll start feeling better soon as the antidepressants kick in. I’ve just started them myself and have been told they can take weeks to take full effect, though.

Susanne xx

Thank you. I've done loads of therapy due to my childhood already and I think this has catapulted me right back there, scared and vulnerable.

The blister thing is larger slightly, I think. But I still have pain in my shoulder and ear. 

I am worried they will dismiss it as stress rather than investigate properly. 

GP today said not to bother carrying on with the antibiotics, not an infection. But it's still there. She just said leave it and it will go on its own in a few weeks. 

Am.i convinced? Can't say as I am really

     Heads up.  What makes you think your GP is wrong?  I had a general practitioner that had just one Texas monthly's top general practitioner award for the DFW area. Notice the word "had".  

     Most doctors and most practical nurses do not know how to recognize IBC. I had a lump the size of your fist my doctor didn't know how I could get a lump that large in a day when I hadn't had one two weeks before. But he thought it might be cancer and sent me to a radiologist, a new radiologist that he had just helped to set up.  She also had never seen IBC but seeing the lump new it must be cancer. Thankfully the technician had worked with a truly good surgery oncologist previously. She gave me a phone number told me to call it but not to tell the radiologist or she would lose her job. The radiologist made such a mess of my biopsy because she couldn't pull out anything that wasn't blood the doctors at MD Anderson thought I had had two biopsies and the melanoma doctor took pictures because she had never seen a breast that badly abused by a radiologist.  Turns out the lump was a hematoma, that's right a blood blister. However, showing underneath the blood blister we're spider like tentacles. My oncologist at MD knew what she was seeing but because the biopsy I had done previously showed stage 1 they decided to take more biopsies one from one of the tentacles, one from the lymph under my arm, one from my breast tissue which had started changing colors. This took a period of two weeks from the first biopsy. I was on chemo by the end of that week as I had now jumped to stage 3. My pet scan a few weeks later showed it also on the thorax making me stage 4. I'm one of the lucky ones. Doctors and hospitals  have ratings  some of which are based on how many of their patients make it and how many don't for each individual disease.  I found a 0% chance of me making it  based on their data at most hospitals.  MD Anderson  has 85% chance of making it for breast cancer patients  however  that number would be 100%  if they would get those patients all before they got into the third or fourth stage.  It's why they are the number one Center in the world not just the US .  That being said  IBC is not regular breast cancer.  MD Anderson generally receives 100 IBC patients a year. 15% make it through the treatments and 50% of that 15 make it two years. 15%  may not sound like much  but it beats 0% every time .  If you do the math then you know out of the hundred that come in for treatment only 7 will make it 2 years and most of them have it return as another form of cancer befor their 3rd or 4th year.  That was 2012. Like I said I'm one of the lucky ones.

     Go with your gut. Your general practitioner may be wonderful but consider getting a second opinion from a specialist someone who deals with IBC or at least specializes in breast cancer. IBC doesn't usually have a lump but it can.   It spreads rapidly, and had we not caught mine when we did, 2 weeks would have been too late.  (My lump was due to a table that I dropped on my breast 2 days before as I was carrying it causing the lump my doctor thought was cancer). I thank God for that.  

     Some things I've learned are:  Number 1 doctors are people, they can make mistakes especially when dealing with something they haven't seen before. Second, your lymph plays a big part in IBC.  Get a bag of Brach's lemon drops. They are about $1.19 at Walgreens or CVS Pharmacies or most grocery stores. Ask your doctor if it's okay for you to have lemon drops. Suck on one for a few minutes, if you hear a pop sound or you suddenly have liquid going into your mouth then it's a pretty good sign that your lymph nodes are blocked. This sourness and the sucking often unblocks your salivary glands. If they are blocked chances are your lymph nodes could be also. IBC is often caused by blockage.

     I am not a doctor. I am a stage 4 IBC patient who was diagnosed and treated for your Her 2 negative inflammatory breast cancer in 2012 and I AM ALIVE.  

    Breathe.  I enjoy life again.  I know my odds of making 10 years.  But even at MD they were surprised when I made it through the treatment. Stage 4 and I will see my son graduate this year and be there when he goes to college. February 2013 my scan was clear of cancer.  February 2018 will be 5 years with no disease present.  There are others who have made it.  So if you find that it is IBC remember there are people out there who have made it and probably most of them no things like lemon drops when your salivary glands and lymph is blocked up and how to stop the neuropathy if you have to go through treatment so you can walk without being in pain. There are a lot of things that we have all learned that have made it and many of those things from each other instead of the doctors. Talk to your doctors about everything you want to try to make sure it's safe for you as an individual. My oncologist and surgeon are not allowed to encourage me to use natural methods which have not been approved by the FDA. So they say " I can't tell you to do that but I wouldn't tell you not to do that".  That has become our code so that I know it's safe to do it and that they've seen nothing harmful happen because of it and sometimes it works. If they truly think something is a waste of time they will say "I wouldn't bother with that."  And if it's something harmful, they have no problem saying "no don't do that".

     The ones that made it can help. Just remember you have doctors and most of us probably aren't. Good luck to you, and while I pray you don't have it I will also pray that you are strong enough to make it through if necessary.

                                              Sincerely,

                                               Teresa 

Thanks for your reply. I unfortunately have had bad experiences with GPs before and have little faith in them. But I'll be sure to go back if anything changes.

Hi, i hope you are doing well.

i was reading your post and i do have similar symptoms. The rash that looks like a bug bite. I went twice to the gp who said it looks like an infection and gave me antibiotics. But i am worried sock about Ibc as one of the symptoms is a spot that looks like a bug bite. I am so worried and having panic attacks as well. I am 27 and i habe a 9 year old son to look after and love but i am not being able to do any of that being so worried of what could this bite be. The gp was not concerned and i have completed 4 days on the antibiotic but no change. I will definetly go back and ask for more tests. Just wanted to know how it went for you! Sending you a big thank you

Hi Girls,

I came here lately because the same diagnosis. If you will go to my profile you will see how quickly everything was happening. I'm waiting for my first chemo. I keep fingers crossed for all of us thorough the all nightmare we have to go through..

Tiga