Inflammatory breast cancer .. so easily misdiagnosed!

new member diagnosed with ibc in jan 2009.
Have had chemo;bilateral mastectomy, and radiotherapy but cancer still aggressive. No secondaries as yet I believe. Have had several different chemo cycles in 2010 to keep cancer localised but onc running out of options although cancer still just under skin across chest . Anyone out there had/has this rare form of bc and still surviving? Would love to hear any success stories as this one is known as ‘the silent kller’. Mine is triple negative … just for good measure , but I am going to fight to the bitter end.

Hi there,
What an ordeal youre going through, no wonder you sound so down in the dumps, please allow me to try and cheer you up. I first went to GP in May 08 only to be sent away, went again in Oct 08, got sent away again but in Nov I got taken seriously by the senior partner and was seen very quickly by the consultant after that. Like you I underwent chemo, just one mastectomy then rads, Im now on Tamoxifen
and will be for 8yrs in total. HOWEVER, Im really well and enjoying my retirement(I was diagnosed 17 days after retiring) but for the first few months after my op, I felt really pessimistic because of what Id read about IBC, its taken till just before Christmas when I was feeling a bit below par. As were now living in Spain and we dont have health insurance, I went to our local private hospital and paid for an ultra-sound and 4 tumour marker blood tests which came to qbout £200, results 3 hours later, completely clear. This reassurance has made such a difference to how I feel, Im planning all sorts of stuff. There was quite a few of us at one time on this sub-forum, some of us just sign in occasionally now but to my knowledge weve only lost 1 girl in the 2yrs Ive been a member, so take comfort in the great strides that have been made in the battle against IBC. BTW, my BCN, surgeon and onc all tell me it`s not any harder to treat, just harder to diagnose.
Take care and be good to yourself, love Mags xx

Hi Lastferry

I was dx with IBC March 2009. Went through chemo with herceptin then mastectomy of left breast plus node clearance followed by radiotherapy. My first ct scan showed a ‘sinster’ spot on my liver. Since then every ct scan after chemo has been clear. My onc. has kept me on herceptin indefinately I have Health Care at Home nurse call every third Tues morning and it takes two hours. So far so good!
Onc said after radiotherapy ended Nov. 09 that I was in ‘remission’ and I’ve been NED ever since. Had recon in Nov. 10 and have appt. in Feb to arrange lipo-suction from tummy to even things up!|I’ll be celebrating 2yrs since dx in March! I’m finally feeling good about myself. There are lots of long-term IBCrs about including people that have had to go through several different treatments. As Woody24 says lots don’t sign in that often but they are out there. Please keep being a ‘squeaky door’ and make sure you get any options going! Best wishes xxxx

Hi last ferry
so sorry ur having such a nightmare time. I’m also triple neg altho I have invasive ductal not ibc. Sounds like wev had similar local issues as I developed skin mets + mets in chest wall after completing treatment last summer. This was v.aggressive + spread like wildfire before my eyes so had more surgery to remove affected skin + tummy skin was used to close me up. Sadly skin mets popped up just over scarline + by time I started rads, I was pretty much bak 2 square 1. My onc wudnt giv me chemo tho+ insisted on holding bak til furtgr spread. My ct has just confirmed progression to nodes at collarbone so I’m bak on chemo next wk. I’m havin carboplatin + praying it keeps the cancer at bay + away from my vitals. I’m only 33 with a small child (20months) no family history etc etc.
I have asked my onc to have some of the tissue removed at most recent surgery retested to check there has been no change in hormone/ her2 status. Might be worth a try 4u too as cancer can mutate + status can change as it progresses?
Wishing u all the best
tina x

Hi everyone,

I was diagnose with IBC 5th November 2008… a date I will not forget in a hurry. I had eight rounds of chemo, 4 of the taxotere followed by 18 x Herceptin, rads and now Tamoxifen. Believe me there is light at the end of the tunnel. I’m now fit, healthy and happy. Ok so every couple of weeks I have to have a monster sleep because i’m tired but thats about it.
I’m looking forward to reconstruction later in the year and enjoying the rest of my life.

Hello Lastferry,

Sorry you’re having such a hard time. As the others have said, there are quite a few of us who only pop in now and again. If we’re quiet it usually means nobody is having any new problems. I think Mags is right that we’ve only lost one in recent times and poor Pash’s disease was very advanced by the time she was diagnosed.

My own diagnosis was March 09. I’ve had the usual chemo/mast/rads and also herceptin. I had my last treatment in December and there’s no evidence of disease. I’m fairly fit and getting stronger mentally and physically all the time. I could still sleep for Britain but I cut myself some slack over that. We deserve a few extra hours in bed after what we’ve come through.

Like most of us, I was very pessimistic about long term survival in the early days too. Now I’m planning for the future again but making the best of every day, just in case…

I hope some of these posts have helped.

best wishes, Jan xx

Hi Lastferry,
I was diagnosed with IBC in June 2006, having previously had ‘ordinary’ breast cancer in November 2003. By the time I started treatmant it had spread in patches all over my chest and back, but 6 cycles of taxotere, a 2nd mastectomy and long term herheptin sorted it out. I next developed 3 brain mets in early 2008 (treated with steroids and whole brain radiation) but the IBC popped up again that summer. This time it was controlled with herceptin and oral capcitebine. It came back again in summer 2010, but after 6 cycles of vinoralbine I’m pretty much clear again.
It’s been a bit of a bumpy ride, but I’m still here, feeling pretty good and looking forward to getting on with life again. Best of luck with your IBC.
Lots of love, Lynn

Hallo All… Lastferry - thank you for unwittingly inspiring several IBC ladies whose names I haven’t seen before, to pop up and share and show that it’s not ALL scary and bad news for us! It has really encouraged me so I hope it has you too.

Treatments are giving us all (& not just IBC ladies) so much more life than we might have had a few years back!

Keep sharing ladies!

New member - diag 2nd Sept 2010 - Aged 40 with 1 daughter age 19.

I just wanted to share my story for anyone that needs something positive, I was mis-diagnosed for 5 months before finally finding out in Sept that i had IBC. My breast was the size of a melon and i had multiple lymph nodes affected. I had chemo - 4FEC and 2TAX, during which the size didnt decrease, in fact, it grew bigger during the TAX chemo. 4 weeks after finishing chemo i had a mastectomy and full lymph node clearance + reduction on other side.I went for my results on Tues 15th Feb and to my astonishment, all 31 nodes were clear and there was a small clear margin round the tumour. The tumour was 12.5cm and the surgeon thinks it was just too big towards the end for the chemo to get through which was why it had grown. To be on the safe side, im having 5 weeks of Radiotherapy and 4 more sessions of TAX chemo, both done at the same time (breast nurse said if anyone can handle this, i can!) as a precaution in case there are any cells hiding anywhere, and its such an aggressive cancer. I never thought id get good news, im actually asking myself if i misheard the surgeon as it all seems too good to be true.Everyone is different but ive gone through this process with the attitude of do what u have to, lets get it over with, it will be worth it in the end,losing a breast(and hair) is a small price to pay to be healthy again.Everyone tells me what a brave person i am, i dont see that, i think my 19 yr old daughter is the brave one because shes been the one looking after me as well as working 3 days a week, and studying for a degree at uni. Im not saying its been easy for me,chemo was hard and ive still got to have radiotherapy and more chemo, but knowing that it has already worked so well is something to remember during those hard times, and i hope this is of some comfort to other ladies that read my story.
Good luck to everyone
Kerry xxx

Hi Lastferry

I,m another IBC lady who is guilty of only popping in now and again. I was DX in August 08. I had 8 lots of chemo, a bilateral MX, rads. herceptin for a year and now I’m on Femara for 5 years - 2 down 3 to go.

Just this week I saw my surgeon who doesn’t want to see me again until August ,and my onc only sees me once a year. It took a long while to get over the panic of the IBC dx but now I can really say I feel fine. I have a good team behind me and if necessary I will deal with whatever life chooses to throw at me.

Look after yourself and come back and talk to us whenever you want

Andie

It’s great to hear that so many IBC are doing well.

My concern is the misdiagnosis. I was four years misdiagnosed. My cancer was lobular. My symptoms four years prior to diagnosis were swelling, thickening and lumps under my right armpit. My GP convinced me it was the remains of a viral infection and refused me further investigation saying as I was under age 50 I was not eligible for NHS Screening. I put myself into the system at age 50 and bang - oncologist said I had had my cancer for a very long time. The first lady to contact me with concerns was a lady with inflammatory breast cancer. She had also been misdiagnosed. We shared similar stories. At the time the symptoms of lobular and inflammatory were not covered in the guidelines and GPs did not need to refer if using only Guidelines. I campaigned for my symptoms to be put into the SIGN Guidelines (I live in Scotland). I managed to achieve this (only armpit lumps) in 2006. However, at no turn do I miss telling the professionals that these two cancers are not covered adequately in the Guidelines and much more recognition should be given. GPs should not only be using Guidelines - they should also be listening to their patient and using clinical acumen but in the real world some don’t. I took my case further via the NHS complaints procedure. All they could say was that the GPs were working to the Guidelines that were available at the time. I also took it to the GMC, and to the Scottish Public Services Ombudsman. Both avenues were a complete waste of time. I’m now taking my case to law. Please take comfort in knowing there is someone out there fighting like mad to get these two cancers to have better recognition.

Wishing you all well.

Jeannie

well done Jeannie… its so good to hear you are taking such a proactive stance… hopefully you an eventually get somehwere with it.

Lxx

hi i was dx sept 2010 with ibc had 4 nodules removed sept 2011, turned they were cancer cells left from oringinal dx but no further treatment need but now two more have appeared recently so waiting to see onc next week hoping they not the same. good luck for further treatment to come x