I have IBC

Hi Debe

I have had my mastectomy (left side only) and my IBC tumor was my whole breast which was 16.5 cm. No clear margins as they had to sew me back up and they have told me the cancer is still in the skin. I was told getting clear margins would be slim with this type of cancer but who knows. I did want more chemo before my surgery to shrink it more but my doctors just wanted to get the bulk of the cancer off me as the risk of this aggressive cancer spreading is very high. Please have hope, please get a 2nd opinion if you are not feeling confident with your present treatment.

I am in for my 2nd round of chemo today - taxotere 3-4 cylces every 3 weeks, to try to clean up the rest of this disease. I will then have 6-8 weeks of radiation everyday with the weekends off. Then hopefully I can get my life and my family back to where we once were before this terrible disease took over.

All the best for you and hugs to all xxxxxx

Dear Debe,  Nobody knows how long you have to live  and many ladies who have IBC have surprised everyone by living years beyond what they were told they would so why can't you be one of those people.

I also have been told that the average person with what I have could live from 18 to 36 months depending on how my treatment goes.  I'm stage 4 and was diagnosed July 2010.  I have  decided that is a benchmark that I will definately  pass because it's certainly not long enough for me to do all the things I want to do especially when so much time has been taken up with the treatments.  I know its very difficult to be positive when you are told such things without being given any hope.   Have you thought about another opinion?  Dont give up, there must be someone who is willing to help you.

Love Wendy

hi everyone, hope u r all feeling ok,  i have been sent to sydney to have radiation before the mastectomies, but this doctor doesnt see how that is possible, as the tumors r so big, there isnt enough skin to cover the wounds, and too much to take from other parts of my body, he has given me months to live, im in shock and dont know what to think

Hi Wendy and Paula -- I'd like to help you with using the Network if I can, nothing worse than not being able to find your way around. :)

If you want to phone or email you're absolutely welcome and Daina or myself can give you some quick tips about how to find things (just click on my username and you'll see my details in my 'about me').

In the meanwhile, here's the main places to find things:

- visit your own homepage to see posts by anyone you've added as a contact (click on 'my home' in your pink profile box which is on the right-hand side of the page). They'll show up in a list with the most recent  at the top, and you can just click through to read whichever ones you want.

- go to the 'Latest network posts' page to see the latest posts by everyone in the network.  That page is here: http://www.bcna.org.au/node/all/blog/network -- you can bookmark it in your browser so you can find it easily, or just visit the 'help' page and you'll see a link on there.  There's a link to the help page on every page at the top right under the main navigation.

- whenever you reply to a post, the system will remember and send you a notification if someone else replies.  That's why you're getting an email when other people reply on this post.

If you want to read a bit more about how the network works, you can download the basic instructions (there's a link on the Help page).

But feel free to ask at any time if get stuck or are unsure (either make a blog post in the Getting Started group, or send me a personal message if you'd rather keep it private).

Hope that helps -- it's always a bit of a challenge discovering how new social networks work (they're all different), but you look like you're doing well so far, and just remember you can't really break anything so don't be afraid to try things out and see what works for you.

Di

Hi Keli

I too got through my 18mths of chemo with humour.  I actually told the radiologists who did the radiation therapy that their bed wasn't very comfortable ... They laughed at that one as it is just a metal tray with attachments, its not meant to be comfy.  I also used to look at Readers Digests a lot and read all the funnies in them.  I would share with my nurses and we would all have a giggle and also a couple of chocolates. Most times my visits to oncology ward would stretch to 8 hours at a time.

I asked for a double mastectomy but they will not remove my healthy breast unnecessarily and because of all the treatment I have had, my options for reconstruction are very slim.  No implants, no shoulder muscle transplant, the only thing left is TRAM and after having a ceasarian 20 yrs ago I'm not ready to have my stomach muscles cut just yet.  I am so lopsided when I don't wear my prothesis, I'm sure it's not good for my back muscles.

I joked when I first found out about my BC that I would end up with new perty boobs like a 20yr old, but things just didn't happen that way.  One of my nurses wants me to get a t-shirt off the internet which reads "Yes they are fake, my real ones tried to kill me" it is kinder funny but also a little sad. I don't think I would ever wear it ...

Marian

Hi Paula

goodness a 16.5cm tumour, that's not good news. I was shocked when my pathology stated 14.5cm multifocal tumours. I had to get the surgeon to draw a diagram to show me the extent of it to get my head around it. I was just grateful it was all removed. My thoughts are with you for what lies ahead. Try to stay strong - you are not alone.

I was going to have Taxotere 4x3wkly with my Herceptin, but because my 3mths of AC affected my digestive system so much my oncologist changed me to Taxol (same drug different course) 12xwkly with Herceptin as she said it would treat me better.  It is from a plant so I had phenergan to stop the allergic reaction, unfortunately I did get peripheral neurapathy (nerve damage) in my hands and feet which hasn't resolved itself. I sometimes fumble things and can't do beading anymore.  It got worse about the 8th dose and then I just suffered til the 12th treatment.  I can't remember that it made me sick at all. My hair started to grow back a tiny bit while I was on it. I had it shaved off as it was like grey fuzz.

Two ladies I know who did had Taxotere got through it with just a few side-effects, one was swollen red peeling skin on their hands which resolved itself when they finished. It seems to be one of the big gun chemos.

All the best Marian

Hi Paula,

I am finding this site hard to navigate too and I think it's only luck that I find messages on here.  I'm feeling lopsided too and wear tops with a pleated look in them to hide my shape.

Today I had to go back the the surgeon because I had two lumps the size of tennis balls under my arm and they were getting bigger and harder by the day and almost joining.  She syringed the fluid from one lump which feels a lot better now and I go back Monday.

Im on  another course of anitibiotics because putting a needle in the wound can infect the area.  I go to see a Radiologist next Wednesday who will give me an opinion whether I need it or not.  I'm already told that I do need it because 8 of 9 nodes taken were cancer so what's left probably is too.  I'm feeling down about the prospect of 6 weeks of radiation as I've heard so many stories about burned lungs, damaged hearts and ruptured bowels. All from the people who had it happen to them.  I just want some time off from all this treatment so I can have a holiday and be normal.  I didn't have Taxatere, I had 6 rounds of EC  which helped for the first 3 rounds.  I feel for you having more chemo, probably just when you're hair has starting growing again.  My oncologist has not ruled out more chemo for me down the track either.  I'm trying to think of the good things, there must be some.  Take care and let us know how you go.

Hi.... I don't use this site very often as I find it frustrating to navigate. I guess it is something I need to get use to. It's only when someone writes a message then I receive an email and that's when I have a look. It's nice that a few more are out there.

Well I am over two weeks out from my mastectomy (left side only and I hate it - very lopsided and uncomfortable) pathology results showed a 16.5cm tumor (AAARGH!), no clear margins, 15 lymphnodes taken and 9 had cancer. Feeling down about all this and chemo starts back up in a week. I am going on taxotere. Has anyone experience this type of chemo?

How did you go Wendy and how are you feeling?

Hugs to everyone xxxxxx

Wendy you really have been through a lot with your costochondritis and then to have a diagnosis of IBC I wish you all the best with what lies ahead for you.  Making connections with people going through similar circumstances is very helpful for me to understand what is happening. 

Well because I'm self-employed, I didn't do any mowing during the 18mths while I was taking chemo as I was quite ill and could hardly walk let alone concentrate on anything much, so it has only been since July last year after I had finished chemo and started to recovered, that I went back to work slowly, being on Tamoxifen I'm still getting pain in my body & cramps etc as well as mental confusion and just no emotions really - but I enjoy the work and the customers & I am just plodding along at present, our mowers are self-propelled so I only have to walk behind mine, just lifting the grass bags & whippersnipping takes it out of me though.

Maybe when you have your planning for your radiaition, let them know of your existing pain in your ribs and they can take all that into consideration. 

The radiation I received was boosts every dose (25) and cut across the top of my heart & part of my left lung. It didn't have any effect on me except some mild redness (I used sorbelene cream), but months on I started to feel the effects with my skin and scar tightening up and I was having physiotherapy regularly to keep everything supple and stretched.  The bone pain has only gotten worse recently (or maybe I have just started to realise what it is) with so many other things going on with my body.

You have to believe that the treatments are doing what they are ment to, I researched all the different types of chemo I received and have an understanding of how each worked in killing the cancerous cells, the blood tests you will be having will indicate how it is going and you will probably be having scans - it is a hard road but so many before us have come through with good results you have to give it a go. What else can you do? Keep moving forward one step at a time :)

Glad you have found us. What I would like to say to you after having my mastectomy 2 weeks agothat i felt very little pain with it.  I had some soreness under my arm from the lymph nods that's all.  I have stage 4 IBC with spots on my lungs, and remaining lymphs look like that they have cancer as the 8 or the 9 nodes taken out were cancerous.  I feel the longer we can stay alive from these treatments a cure may not be far off.  I know it's very hard to be positive but some people can live years longer than expected and why can't it be you.  Good luck, I'll be thinking of you.   Wendy