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IBC ladies, your experience please?

14 REPLIES 14
lyndu
Member

Re: IBC ladies, your experience please?

There's also an american site specifically for ibc - google ibcsupport.org

Lyn

Lorrine1963
Member

Re: IBC ladies, your experience please?

Hi Have just registered with ibcpals and waiting on the account being set up. Not sure how to find anyone with IBC but will have a try. Hope to catch up with you there.

Lorraine

Lorrine1963
Member

Re: IBC ladies, your experience please?

Hi Jackie. I am not very good with computers or finding my way around sites but will have a look for bcpals. Is it on this site? I have never spoken to anyone else that has had IBC and it would be great to swap stories. Will let you know how I get on

Love Lorraine

Lorrine1963
Member

Re: IBC ladies, your experience please?

Hi My name is lorraine and I am please to meet other people that have had to deal with IBC breast cancer. There are not many of us out there I will post my biography.

I was shocked when I was told I had inflammatory breast cancer Sep 06. December 05 I went to a private hospital to have biopsy,scan and mammogram. I was given the all clear and was told it was mastitis. August 06 my breast had grown and was inflamed. I went to the NHS hospital (beatson also there)l to be told a few weeks later it was a rare cancer and difficult to detect. By this time it was 19cm by 20cm. Never heard of anyone having such a large tumour. 6 treatments of chemo reduced the tumour to 9cm by 7cm. Had mastecomy and reconstruction in March 07 then radiotherapy. Finished treatment early June. Apart from waiting on results I got through the treatment without any problems. Only now sometimes I think the worst. Not all the time but every day it does come to my mind. Because this is such a rare cancer there's not many people I can talk to about this. Everyone else's story seems to be a lot better an outcome. Not sure if I can say its treated and gone. There was cancer in my lymph glands so had to have them removed. Waiting to see what the future holds. Trying to be optimistic for the sake of my family.

I

mabel
Member

Re: IBC ladies, your experience please?

Hello Rebecca,

I was dx with IBC at the end of 2005 aged 44.
I'm a teaching asst and did not work during treatment but returned to work when done.

I had a skin recurrence 3 months after my mastectomy but a WLE gave me clear margins. I then went on to develop skin mets and have been on a chemo trial since April 2008 and am pleased to say they are responding well. I have continued to work this time as the chemo is in tablet form, only taking time off to attend appts every 3 weeks.

Jackie

Jolanday
Member

Re: IBC ladies, your experience please?

Hi Rebecca, I was diagnosed with IBC in April 2007 and had 6 months of chemo followed by 6 weeks of radio. I worked through treatment, only taking a few days off after each chemo. I too have a stressful job (lawyer) and regret working as I got very bad review at my end of year rating as I was rated against my peers - who were obviously a lot more productive than I had been! I was told that I should either be fit to work or off sick - there was no inbetween. I continued to work as I wanted to keep everything as noral as possible.

I also has a year of Herceptin which finished in October 2008. However, just before my last Herceptin I was diagnosed with secondaries in my spine. I am still working and have not told my managers about my secondaries diagnosis. They were not particularly helpful or interested during primary treatment and never asked me how I was. They don't seem to have noticed that I am still nipping out for medical appointments and still having days off (for biophosphonates). I was 43 at diagnosis.

Mum2Two
Member

Re: IBC ladies, your experience please?

Kate & Julie,

Thanks for taking time to reply.

Kate, what you've said is honest & doesn't scare me, dying doesn't scare me (too much ... lol), what scares me is "wasting time". IBC is indeed very agressive, but then no breast cancer is predictable, and my feeling generally is that I can't afford to waste any time by not spending it doing thongs with the children. Mine are a little younger than yours, at 3 years & 17 months, and sadly they will never know me before BC tainted my life, but I hope the memories will be of someone who enjoyed rather than endured life. Sorry for the loss of your friend, this is such a shitting disease to take someone so young so quickly.

Julie, your reply gives me hope! My onc has given me 90% chance of secondaries, and my initial prognosis was three years. If I can even have half of what your friend had, so seeing my babies safely off to school, then I think I'll be grateful.

Hugs, Rebecca x

Jez
Member

Re: IBC ladies, your experience please?

Hi Rebecca

I haven't posted for a long time, but just wanted to let you know that I worked with a lovely lady who was dx with IBC in 1997. She had a double mastectomy, chemo etc. and returned to work 12 months after surgery. She was well until last year when she fell and broke her hip. She had a hip replacement and was doing really well, but was dx with a recurrence and sadly died last September. She lived for 10 years from dx without recurrence or secondaries, so there is hope. She had a very poor prognosis, but defied the odds. There is always that chance that you fall on the 'good' side of statistics.

Julie x

dippykate
Member

Re: IBC ladies, your experience please?

I think you have to think about the quality of your life and what you would feel like if you went back to work and was diagnosed with secondaries very quickly. You also have to do what makes you happy but as you've called yourself Mum2two I think that is the clue that being a mum is more important to you than your job.
One of my friends had IBC and as far as I'm aware it is the most aggressive form of bc and she had 15 months before her secondaries were diagnosed and she died 10 months after that. However, when her initial liver secondaries were found, she made the decision not to have chemo straight away but leave it for 3 months - she had her reasons but not the route I would have chosen. She may have lived longer if she had had chemo straight after the secondary diagnosis but who knows.
I've never been diagnosed with IBC but the way my bc presented and has been so aggressive, I'm sure that is what I have. I had an initial tumour of 8cm when I was eventually seen but it was never a lump so I had chemo first in April 05 and mastectomy in Sept 05 and by nov 05, I had skin mets about 5cm above my scar line even though I 'd had clear margins. These were treated at the same time as my rads post surgery. I developed hip pain in may 06 but the initial bone scan didn't show the hip/pelvis secondary and in august 06, I had a new lymph secondary in my opposite armpit and by sept 06 a small one in my liver and widespread lymph secondaries in my lungs plus another bony one in my spine.
I continued to work very part time until a year ago as I needed to be part of a non-cancerous world but after that have not worked as just get too tired and want to spend time with family and friends.
Even though it is shocking to read what I've written, most of my time I've had a good quality of life and been able to enjoy it with my family and friends. I've also felt better on chemo than off it due to the way it has spread and the symptoms it gives me outweighs the side effects of the chemo.
Good luck with your decision and just live every day as it comes and try to enjoy the present.
kate

Lynni
Member

Re: IBC ladies, your experience please?

Hi

Don't know if this helps but i was dx Jan 07, mx feb and secondaries found couple weeks later in bone. No chemo but had radiotherapy and tamoxifin. One year later had oopherectomy (i'm BRCA2) also onc was going to "switch" ovaries off anyway as thought tamoxifin not working (from blood test) and also started on Femera. During that op surgeon noticed suspiscious (spelling?) area on peretinium wall, biopsies confirmed bc and bc also found in ovaries and tubes. Onc couldnt tell if this had been there all the time or a recent spread as it hadn't showed up on CT/MRI scans. Recent scans still don't show the spread in peretinium, apparently its still too small, which is good. I'm monitored every 3 months and generally feel really well. Everything is stable.

Take care

Lynne x

ForumMember
Member

Re: IBC ladies, your experience please?

Hi Rebecca

I am so sorry to hear that you are faced with such a terrible decision. I haven't got IBC, so can't comment at all on secondaries issue. However, in terms of your job, it does sound very stressful even without having BC to contend with, especially with small children. I suppose it very much depends on whether you work for enjoyment or whether you need to financially. Could there be a compromise like part time work or a job with with less repsonsibilty? Personally, if I had my time to do over again, I wouldn't have worked so much as I missed out on my children growing up, but at the time, a career was very important to me. It isn't anymore, especially since getting BC, my work is a means to an end and I enjoy my life much more with that attitude. Perhaps you need to re-evaluate your priorities, whether or not (and I absolutely hope not) get secondaries.

Wishing you the very best whatever you decide.

Cathy
xx

zotam
Member

Re: IBC ladies, your experience please?

As you may know my daughter had IBC and unfortunately it is an aggressive cancer ... even so Lisa was told that she had every chance of surviving as she went to the Dr immediately. Many women don't get secondaries but the chance is quite high. Unfortunately for Lisa she discovered a lump in her back just weeks after initial dx and before chemo started .. that then changed the whole dx and she was told that being an aggressive cancer then once it has spread then .it is likely to have spread somewhere else too. The chemo certainly worked in that several months later after chemo, mastectomy etc no cancer was seen anywhere in her body but what we didn't know was that a rogue cell had got into her brain where the chemo she had doesn't get to.
So its very difficult to advise you except to say that IBC is aggressive and has a high chance of spreading but not necessarily in your case. I can understand what you are saying though about work and I agree with Sarah in that you don't need extra stress at this time.
Just do what you feel like doing and feel comfortable with .... make the most of your time off whatever. Lisa worked with a team of men and really didn't want to go to work so she didn't. She worked for as good company though and got 60% pay while she was off.
Thinking about you
Love Sue x

sarah66
Member

Re: IBC ladies, your experience please?

Hi sorry no one has replied. I don't have IBC but had bc this year and i realised how important my children and husband are to me, i think it is really important to spend time with them especially when people do not know how long they will be around for. I know work has its place but it is all about enjoying the time we have and making special memories. Extra stress at work is something i'm sure you do not need.Hope you don't find making your decision too difficult

Take Care
Sarah66

Mum2Two
Member

Re: IBC ladies, your experience please?

anyone?

Mum2Two
Member

IBC ladies, your experience please?

Hi ladies,

As I know there are a few ladies around here with IBC, I'd like to pick your brains & pool some knowledge to help with some decision making.

I'm going to need to make a decision about work soon, and am wondering about my options. I like my job, but it entails long hours & lots of stress. I also have two small children and a husband who works away part of each month.

My decision is mainly based on my chances of getting secondaries, as I don't want to "waste" time working, if my time of quality living is limited.

My onc has said my prognosis is poor, but can't won't give any further commitment about when I might get secondaries (she's said it 90% likely).

So, if you have IBC, and have sadly been diagnosed with secondary spread, can I ask how long from your original diagnosis? Sorry if this is too personal, if people are willing to share, but would perfer to PM me, that would be fantastic.

Thanks, Rebecca