Hi,
I have Inflammatory Breast Cancer which was diagnosed start of May. I know is quite rare and I do not know anyone else with it or who knows anyone who has had IBC.
I have learned not to believe what I read on-line. (But only after I polished off a full bottle of wine having read some ill informed sites! What a hangover!)
I know every one’s treatment is different but I would like to compare notes to some extent.
I’m just over cycle 4 of FAC chemo and meeting doc on Monday re surgery “soon”. Cancer has responded very well so I’m feeling very positive.
TTFN (Ta Ta For Now)
Geraldine
My daughter was diagnosed with IBC too in May. She is 33. We know its a very rare and aggressive cancer and were really shocked as we had been told that it was a cyst. She had gone to her Dr immediately when she found it. She had waited 4 weeks for a needle aspiration and when they tried and failed, as the lump was too big and too hard, all hell let loose in the hospital. She had to have an ultra sound, a mammogram, chest xray and biopsies (6 taken). We were there all afternoon and my daughter went into shock with all that had happened to her. We then had to wait over a week for the results. To say we were shocked when the results came through is an understatement.They decided to put her onto the NeoTango trial. A few days later she discovered another lump in her back, just above the waist and told them but no one seemed very interested and said that the chemo would deal with it if it had cancer cells in it. Not satisfied she kept asking about this lump and eventually during her first chemo (Pac/Gem) a young Dr came and looked at her back lump and called another Dr. The outcome was more biopsies and it proved to have cancer cells in it. We were then called to the hospital and told that everything had changed as she now had a secondary cancer. They added that if the cancer had had time to form another (subcutaneous) tumour then it must have gone to other organs in her body in which case there would be no operations and they would only ever be able to keep the cancer at bay with chemo. The outlook seemed grim. She could no longer be on the trial but would continue with the same chemo for now. I can’t tell you how we felt and as a Mother I wanted to scream and shout and swear and throw things … but of course I just held my beautiful daughter, who looked the picture of health, while we sobbed together. A CT scan was done a week later to find out just where the cancer had spread to. I didn’t sleep for a week as well as going to work and the dreaded day of the results came round. I can’t describe the pain in my stomach and chest as we entered that hospital. We saw the same young Dr who first examined her back lump and he looked so serious when he looked at the results on the screen and we could see pictures of her lung. It HAD spread to her lung BUT he added it was only a small node (don’t really understand it all) but it means that she doesn’t have another tumour or mets and so they are now considering removing the back lump at some point and hope that the chemo will deal with the lung. The breast lump to be removed later maybe mastectomy. We yet have to find out more as neither of us could take it all in … all we knew was that there was still a light at the end of the tunnel. That’s all we need, a small light and something to fight for. My daughter (Lisa)is being so brave and says she is going to fight this ‘thing’ with everything she has.
So IBC is a serious and aggressive cancer and its very scary to be diagnosed with it but it doesn’t always go the way the Drs think it has. Because it is rare the Drs are still learning. Like you,Geraldine, Lisa has just had her 4th chemo, out of 8 and the breast lump seems to have shrunk and is much softer. We are learning all the time about IBC… being rare it isn’t discussed a lot. Keep being positive like Lisa, we have been told that those who are positive win!
Hi Geraldine … Lisa’s Mum again … I forget to add that we would love to know your story too ( and anyone else out there with IBC) as we also know very little about IBC and we are still very scared as we know we still have a high mountain to climb.
Hi Lisa’s Mum
First let me say how sorry I am for you as a mum. My one consolation has been that at least this happening to me and not to my daughter. This is a Mum’s worst nightmare.
I went to my GP having had a negative mammogram only 4 months before. He presumed it was damage (poss fat necrosis) as a result of the mammogram as I am fairly busty and the squashing of the breast was quite painful. He put me on Ponstan but after a couple of weeks I saw my breast surgeon. I saw him Mon, biopsy on Tues and results Fri! As you can imagine that was a long week. I was in the hospital on the next Monday for tests and was lucky that there was no sign of it having metastasized.
Things happened very quickly as IBC is very aggressive and I had a 10cm lump! I was on chemo on the next Fri.
Happily the cancer responded very well and the lump is now reduced so Dr wants to do the mastectomy next week. I was a bit shocked that it was so soon but better to get this step over so I can continue with my treatment. I will spend this time building up my strength.
The main thing I have learned is do NOT believe the Internet! The statistics on line are well out of date. Cancer treatment in general and IBC treatment in particular has been revolutionised in the past five years.
The fact that your daughter is young will stand to her as she will have the strength to fight this. The treatment and the surgery are only part of her weapons against IBC. Her own attitude is very important, if not more important than anything.
I try to face each step one at a time. I did not worry about the surgery when I started chemo as it was down the road. When preparing for the chemo I did lots of research and got myself a beautiful wig! I also had a makeup lesson in the hospital and that was a great help for my self image.
Now that I’m faced with surgery I am doing lots of research into not only the surgery, the after effects but also the prosthetics I might need till I have reconstruction, possibly next year.
I try to keep exercising and walking most days… well any day it is not raining which, in truth, is not most days. I try to eat when I don’t want to so I stay strong, and to be out of the bed by a certain time each day!
My heart goes out to you but you must remember that BC is a chronic illness but not necessarily fatal.
All my best wishes to you and your daughter, It is the start of a difficult journey but you will all come out of it in the end.
Geraldine
Hi, I was diagnosed in Feb 07 with Inflammatory Breast Cancer which I thought at the time was just another kind of ordinary breast cancer that gave me similar and fairly hopeful chances of survival. After my 3rd session of 6 chemos and when it was evident that the 8cm lump in my left breast was shrinking I felt brave enough to look it up on the internet. I was initially devastated by the statistics and felt so alone. But my treatment has been very successful in that the chemo seems to have worked. Following my mastectomy the histology was that my lymph glands showed no sign of cancer and the margins of the excision of the operation were all clear. This was very good news and on meeting my Oncologist just after my radiotherapy he said that, ‘I would probably be alright’.
Great news, but I have a friend who is a Pharmaceutical consultant specialising in breast cancer and I know she is worried about reoccurance within 2 years. But she has told me that I have had great treatment and my chances are not to be compared to those on the internet which include women who have been treated differently, the old style.
I have well and truly packed life in this year I can tell you. I have booked several minibreaks away with my husband and friends but don’t want at the moment to go away for longer as I have 2 boys 22 and 20 who are lovely to be with, still at home and both with steady girlfriends so really enjoy their company.
I am back at work in the public sector managing 40 staff but have reduced my hours from 37 to 34 over 4 instead of 5 days which is working really well.
Today I have pain in my spine, in fact have had it for a few days. I saw the Oncologist on 7/7/08 and all appeared to be well which everyone is delighted about but of course I,as we all are, am my own best diagnostic and if the back pain goes on I will need to do something about it.
In the meantime I am trying to get the most out of life possible, tomorrow I am going horseriding with a few folk from work, not quite sure how I am going to get on the horse never mind get off it, but hey it can’t be worse than having a mastectomy, when the previous day my father died suddently and having to travel down from Yorkshire to Nottinghamshre on a Friday evening was half an hour too late to see him alive. The darkest moment of my life was the memory the day before of seeing my dead father and getting up the following morning at 6am to get to the hospital for 7am for the Op. I was numb but kept saying to everyone, my dad died yesterday, and no-one knew what to say to me, I cried continually until I was put under…
However, food news that the mastecotomy went really well and I had a good rest in hospital which I needed.
Would really like to hear from anyone who has similar experiences, the best antidote to all this is to have a bloody good laugh whichever way you can.
Best Wishes to all Maria xxxxx
Hello…
Just joined the site a few minutes ago…
I was diagnosed on May 27th this year… I got out the shower 17 days earlier and noticed my left breast was totally pink… I was away from home but phoned my GP surgery on the monday morning straight away. I was seen by the oncall doctor and the first thing i said to him was i thought i had Inflammatory Breast Cancer… (I have to have annual mammograms due to a very bad family history of breast cancer - my grandmother died at 45 and her sisters also died in their 40’s, and later my aunt was diagnosed at 48 and her alot of her cousins in their 40’s… Anyway it all meant i knew of IBC and the signs…) To be honest i think the gp i saw that day had never heard of it… He was convinced it was mastitus and prescribed anti-biotics… I was due to have my annual mammogram the following monday anyway… So he said to take the AB’s go for the mammogram and any problems would be picked up then…
I must admit that week we did wonder if the AB’s were doing their job as my breast felt “strange” inside… Which we hoped was any infection draining away…
Anyway - went for the mammogram and the woman doing it said if there was anything strange on it - the results would be sent straight to the breast clinic and she made a note on my file that i was concerned it was IBC…
Never did hear straight away from breast clinic - so again thought “phew” this is an infection…
I had a followup appointment at the GP - and this time saw a female doctor - she took one look and said we need to get you to the breast clinic straight away… She emailed them and i got the phone call saying to go in the next day almost as soon as i got home…
The next day i was examined and they went to find my mammogram results which were sitting in the pile to recieve a “thank you for attending - come back next year…” although the actual results said - changes to last year, thickening of skin - possible IBC needs further investigation…!!!
They did an ultrasound and biopsy and were able to get preliminary results that day confirming it was IBC…
I then had a week of scans to see if it had spread - but luckily it hadn’t - even though one lymph node was involved from the ultrasound…
I started A/C chemo a week after diagnosis and have just had my third treatment today…
Also today i saw the oncologist again and she is pleased with how the breast is looking, and got the core sample results from the biopsy apparantly it is oestrogen-receptor-positive (ER+) breast cancer and herceptin negative which she seemed to think was a good combination…
Well that novel is how i came to be here today… How do i feel…?
I think like the rest of you i scared myself silly reading websites - especially the week when i was going for all the scans and we were so scared it had spread as a lymph node was involved…
It is good to speak to other people with the same condition - even the nurses at my oncology unit have said they have not had an IBC patient for a few years…
Hi rhapsodyangel
Do not worry, one of your lymph nodes were involved, many of mine were and my chemo has killed all trace, there was no evidence of any cancer after the chemo treatment which I think they have got off to a tee now.
I am fighting fit now, I am 47 years old and don’t look my age believe me, but I feel it with aches and pains from the effects of the chemo and onset of menopause but all a small price to pay for your life.
I wish you all the very best and to let you know that I am giving a Power Point presentation to 40 staff tomorrow which I never thought I would manage again so don’t give up hope, you will survive. And If you knew what a whimp I have been you would be impressed I can tell you.
Best Wishes
Maria
xxxxxx
thanks maria…
i noticed a weird coincidence when i read you earlier post again… i mentioned i was away when i first spotted the problem… i was actually back home in the midlands for my mum’s funeral which was the next day…
that was such a surreal weekend… i never mentioned to anyone what i had found… and they just thought i was quiet because of what was happening… also like yourself i just missed seeing my mum before she died… we had been on holiday in majorca when she was taken into hospital and i was told not to rush back… (she had been in a nursing home and to be honest was in and out of hospital like a yo-yo…) anyway we returned saturday afternoon and i was going to go down on the monday - but she died on the sunday afternoon…
Hi
I was diagnosed with IBC in November, after noticing my nipple had inverted and the skin was pink. The doctors were very quick to start chemo. I had 4 FEC and 4 taxol followed by a mastectomy. I am now about to start 6 weeks of radiotherapy every other day. I am still sore from the op but apart from time off for the op have managed to continue working. It was important to me to try and be as normal as possible. My wig worked well but I cant wait for my own hair to grow a bit longer. It is like waiting for a kettle to boil. I was disappointed when I went for an appointment for my prognosis, especially as I had read all sort of stuff on the internet. The consultant said he could not give me a prognosis as it was too rare and there were no studies for statistics to be based on, but if I wanted a figure 50% would be about right! Better than the 3% on the internet though. The chemo is taking longer to get out of my system than I would like but I feel a lot more positive than I did in November, and arranged a party to celebrate being alive!
Good luck to everyone with IBC
Penn1
Hello zotam,
I’m sure we’ve ‘chatted’ before as I can see that this thread has been reopened.
I’ve read all the latest news re Lisa and am so sorry for your loss.
How are you doing?
Love
Jackie xxxx
Hi rhapsodyangel
Many apologies for the delay in response, I have had terrible problems with the web site etc and have only just managed to reset my passwords.I am nearly a year on from my mastectomy and 18 months post diagnosis and got the good news recently. Of course everything kicked off the day before my mastectomy when my father died suddenly. It isn’t easy this far on, life is back to normal, I am back at work and everything is OK to all purposes but I still feel a bit wierd and am hoping everything OK with me, although have to say no signs and symptoms so far.
I was so sorry to hear about your mum, my own mum died in 1994 just after I had been diagnosed with a rare benign but aggressive tumour in my left chest and had to have extensive surgery to remove. To look at me you would never believe there was anything wrong and I pride myself on that. I had ribs out the first time round plus muscles taken from my back and stomach to plumb in to the space left. I guess I have just been unlucky.
I consider reconstruction very carefully as with all the previous surgery I have had my chances of it taking are reduced.
All the best and lots of love
Maria xxxxxxx
Hi
I was diagnosed with IBC 3 weeks ago and was started on chemo last thursday. I had never heard of it before although by coincidence there was a extract from a recently written book by an american ladie sufferer in one of the daily newspapers the day before I was diagnosed.
I too spent a long time on the internet researching but became so frightened that I gave up and am trying to take the attitiude that statistics are always there to be beaten.
Having only just started chemo it was great to hear from someone on the site who is much further down the line than I am and doing really well.
Thank You
XX