Diagnosed with Inflammatory Breast Cancer

Diagnosed with Inflammatory Breast Cancer

Diagnosed with Inflammatory Breast Cancer I have just been diagnosed (11.6.07) with above “Rare” cancer, absolutely terrified, family in shock, paralysed with fear and in a very dark place.

Going for Chemo assessment on Friday but feel there is little hope. Frightened I may not make it to starting treatment.

Sorry to moan, but need some hope and friends to talk with.

Thanks for listening.

Hi Homsey Hi Homsey
I am sorry to hear you have had to join us on this site, but you will receive fantastic support from people who know what you are going through, I was diagnosed with breast cancer on the 20th March, and have been on a rollercoaster ever since, but when I’m down I come on here, and the girls ( and Men) have been my saviours, I have a very good family, but they do not have breast cancer, can I suggest you ring the helpline, there you will be able to ask all the questions you need to and get all the answers from qualified breast care nurses, or come on here and post, there will always be someone on line, as we all get sleepless nights, I found the waiting is the worst once you get into the treatment, you just seem to go with the flow, can I suggest you write down all your questions and take the list with you to your appointment, as I forgot all I wanted to know, until after I had left, and then got upset with myself, please keep posting we are all here to support you
take care and loads of hugs

Hi homesy,

sorry to hear about your dx.
Completely understand the shock and confusion you are feeling now.

I was dx in Dec 2005, (happy christmas!)
I too have IBC.

I have just finished treatment and am happy to answer any questions you have if I can.

I tend to use the other site more than this as we can send personal messages, let me know if you would like the link

When I first discovered I had IBC I got myself intoa terrible state, but over the course of 18 months or so of treatment I’ve come to realise that although the rarest from of BC I was not alone.

I am from Essex too and wonder which hosp you are under.

I know it’s very frightening now but I promiswe you will feel better once your treatment plan has been decided. It helps to know you are fighting back.

Homesy, please remember, there is always hope.
I am returning to work on Monday and currently feeling very well.

Take Care, post when you can,

Hello Homesy,

sorry to hear you say that there is no hope - I agree with Jackie - there is always hope but I too felt in the very early days that it was hopeless but I have now finished treatment and have just gone back to work this week - even though there are no guarantees with cancer I do feel well and optimistic at the moment - I don’t have IBC but I can identify with the feelings of fear and the dread and the awful waiting. Best of luck with your treatment . Post here when you can and when you need to - I have found it useful - no matter how much support you have from family and friends it is still lonely having cancer - but on this site we are all going through or have gone through similar things.

Wishing you good progress with treatment, Chloe x

Thankyou Hello

Thankyou for your replies, it really does help. I will take everything that you have said on bourd and your good ideas.I know I have a long fight ahead and I am not going to give up.

Fitzy, I am going to Broomfield and I don’t know about the other site you mentioned so would like the link please. You mentioned a 2nd opinion, I would be interested to know who you saw and where.

When I mentioned Royal Marden I was told I would receive exactly the same treatment and feel I should at least give it a try, any thoughts

Have any of you found any other support networks of use in the Chelmsford or surrounding areas.

Will post again, thanks for being there.


How you doin? Hi homsey,

how you doin today? Really sorry to hear of your diagnosis and that you’ve had to join us. I hope you find this site as invaluable as I have since I was diagnosed on March 19th. The support you will find here is second to none. Having supportive friends and family is awesome but sometimes its good to hear from people who totally understand what you are going through as they are going through it too.

Please, please don’t feel that there is little hope. Research into breast cancer has come on in leaps and bounds and over the past few years there have been some amazing advances. The prognosis is a million times better than it was 10 or 20 years ago.

When I was diagnosed I felt my whole world had fallen apart. I was 34, don’t have any children yet and am not yet married. I have the most incredibly supportive boyfriend and felt annoyed and angry that there are so many things I still want to do. We have always been keen to get married and have children in a year or 2 and I certainly intend to do that. I had a mastectomy in March and am now on chemo for 5 1/2 months after which I will have rads then hormone therapy. We are well aware that all this treatment may render me infertile but all we have is hope so we have to stay positive. Fingers crossed, as I am on the younger side, my fertility will return to normal after treatment and we will be able to have the children we so desperately long for. I guess only time will tell, and if its not to be then we will just look at other avenues such as adoption.

Sorry to go wittering on about myself! I really hope the chemo planning session goes well for you on fri. I took my boyfriend with me to mine as there was a lot to take in and I knew I wouldn’t remember half of it! My oncologist was fantastic and gave me loads of information to take away and read in my own time. I also ordered loads of leaflets and booklets from this site and have found them an invaluable reference source. I know I have a big box with all my bc info in.

Take care and hope all goes well on friday. If you need someone to talk to I found that the helpline this site offer is awesome. I rang it before I went for my follow-up appt after my mastectomy. They told me what to expect and suggested questions I may wish to ask. Also, there is ‘live chat’ on between 9 and 10 tonight. Lots of women use it and the nurses are there too so you can ask them questions,

All the best,


HI Helen,

Just popped in to see if how you’re doing, so pleased to see your post.

I see onc/surgeon at St Margarets in Epping and had chemo and surgery in Princess Alexander Harlow.

I know that St Margs got some bad press last year but think you will find the probs occured before I began treatment in Nov 2005. I got my second opinion from another surgeon there.

Apparently we are referred to Broomfield for recon if it’s not a straightforward op.

Hope you’re feeling a little better today, speak soon,

Recovered from IBC I was diagnosed with Inflammatory Breast Cancer in June 2006. I’d first had breast cancer in 2003-4, and was doing fine after treatment. But I developed a strange swelling under my sternum at the beginning of May, but by the time IBC was confirmed it had spread in several livid patches over my chest and back with lots of little lumpy nodules in my skin.
I checked IBC out on the internet, which was really scary, but I started chemo (taxotere and herceptin) and within 5 days most of the red patches had gone. Originally my oncologist had said that there would be no point in having a mastectomy as the cancer had already spread outside the breast area, but the chemo was so successful that it was decided that I could have the mastectomy.
When the tests came back on the tissue which had been removed, there was no sign of the cancer in the breast or lymph nodes. When I went into the clinic for my results, everyone was grinning at me. Even the lady who made the tea in the chemo department knew!
Six months later I’m still having 3 weekly herceptin and I take arimidex every day, but I’m back to normal (work, etc.) and I’m fit and well. I’ve even got myself on the waiting list for reconstruction, probably in November/December.
When I was first diagnosed, I really didn’t expect to be alive now, but I am. The new treatments really work, and they’re getting better all the time.
Lots of love and keep your pecker up,

Thanks Hi Lynn

Thanks for this, I didn’t know you could have BC and then get a different form such as IBC. You seem to be fighting back well and I take great hope from your journey.

I will post further and will look forward to your future updates as you’ve really given me much more hope.

Thanks, Love Helen

There is hope Homsey

I was diagnosed with this too 3.5 years ago and I’m fit and well and starting to expect to remain so. It is terrifying and isolating but you’re not on your own.

Happy to chat - I’m the UK based person on www.amazonheart.org/AHThunder/contact.htm


Hi Helen and All,
I have just found you! Chemo brain has set in and I never thought to do a search… daoh!
I have been diagnosed with Inflammatory Breast Cancer in April. My own GP put me on Ponstan when I first went to him! What a total twit! But seems it did not do a lot of harm. I had a negative mammogram in November so recon it started in Feb. My dx was invasive, grade 2 , ductal c, neg for oestrogen, HercepTest neg (1+)
Within a week of results I started FAC (Flourauracil, Adrimycin/Doxorubicin, Clyclophosphamide.) I have had 4 cycles and now am preparing for mastectomy.
Rad is down the road. I am lucky that my children are in their 20s. I live alone with my dog so this keeps me active.
I’m delighted to hear positive news. The internet info is well out of date and not very encouraging.
Ta for now

Hi there,
i hear what you’re saying, I too have just been diagnosed with inflammatory cancer on top of the lobular cancer - just to keep things interesting. Try not to think of the negative reports you see, concentrate on the good news ones and stay positive. Three weeks ago I was a healthy, active gran … looking forward to her first real trip abroad, now I’m busy fitting scans/ hospital appointments etc into my schedule. But remember, IBC is very treatable - I’d suggest meeting up on the 20th anniversary, but I think we’ll be way too busy to be wanting to recall this blip in our lives.
Stay strong

I was diagnosed with inflammatory breast cancer in October 2005. As I was then 79 yrs. of age my first thought was that this was the end of the road for me. However, I was immediately started on 6 cycles of FEC, followed by 20 “hits” of radiotherapy and then, after a 6 months rest, 12 months of Herceptin. My last dose of Herceptin was in August 2007 and in January of this year my mammograms and scans were clear.
The surgeon suggests I now have a mastectomy but as I am now 82 yrs. I am reluctant to go down this road and have opted for a “wait and see” policy and can change my mind later if I wish. I am now monitored every 3 months, alternately by the surgeon and the oncolgist and cannot sspeak too highly of the care and attention I have received from our local Cancer Care Unit.
I have always had an active and busy lifestyle and was never ill before finding this lump. I am still fairly active but much slower because of painful degenerative changes and lowered bone density in my lumbar spin, hips and knees. This is most likely age-related but I do wonder if the chemo and Herceptin have also had an effect on my joints, because the problem started so suddenly after completion of my treatment.
I remain positive though, as I have throughout all my treatment - apart from that initial shock and dismay - and I do hope that you too, have found some strength and comfort and that your treatment is progressing well. My very best wishes to you Frances