Inflammatory Breast Cancer

Public Archive
1

Hi everyone,

I’ve just been diagnosed with IBC and am starting my first chemo on Wednesday, I am scared stiff and so shocked. I knew there was something very wrong with me but breast cancer was the last thing I expected and was only discovered by chance.

I have been ill and off work for some time now, with joint and muscle pain and numerous other things that would take forever to list. I’ve also had a lot of breast pain, but because I had a clear mammogramme and no breast changes, my consultant was looking elsewhere for the cause of all my symptoms.

By chance, 4 weeks ago, I saw a new doctor, who wasn’t happy about the breast pain and did a biopsy just to be on the safe side. A week later, they told me I had IBC. I’ve just had a bone scan and CT scans to see if it has spread, but wont get those results until the day after my first chemo.

The doctors think there is a possibility that a lot of my illness is connected to the IBC because it is quite rare and seems to affect people in different ways. My main worry is that because I feel so ill anyway, I don’t know how I will cope with the chemo.

Sorry for rambling on, think I got abit carried away. Just feel so alone at the moment and can’t think straight.

God bless

Linda x

2

Keep in there - it is definitely a terrible shock it will calm down. I am sure you will cope ok with chemo the nurses and staff will be able to reassure you and you will meet lots others in the same situation you can chat to… I shall think of you on Weds
Good luck with the results of the scan

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Hi Linda

Sorry you have had to join us on this site, but you are in great hands, and will find so much support and friendships that it will help you.

I am sorry about your dx and that you have to wait for any scan results, but am keeping my fingers crossed that your results are good.

Try not to worry about your chemo session. I started mine on 8 August, and had my second last Wednesday. I am on FEC x 3 and Taxotere x 3, so a third of the way through now. I was absolutely terrified about having chemo but have to say, that it was not as bad I thought and it is very doable. And once the treatment started I felt more positive and knowing that something was being done to fight back, it made me stronger. I have not really had any side effects, no sickness at all, but taking my anti sickness tablets as told. My only bad thing is my hair loss, which started last week and I took the plunge last night and had it shaved off. Was very emotional last night, but OK today and now just moving on, as that was a big hurdle to get past. I am 39 years old and have two children, one is 4 in December and one is only 9 months old. My world fell apart on my diagnosis, but unfotunately I was doubly unlucky as has spread to my liver too, so a double whammy there.

You will, I promise you, get so much support on here from people that are in the same boat, or similar, and from others too. You will get through this and you will be able to cope with your chemo. If I can, you can, I promise. Just try to stay positive. Come on here as much as you like, to rant, rave, scream, cry and you will get everyone trying to help you.

I don’t know your personal situation, but I hope you have people around you that can help you through this terrible time. If you need anything, let me know and if I can help, I will.

Take care and thinking of you.
Love
Dawn
x

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Hi wisdens and Dawn.

Thank you both very much for your kind words.

Dawn, you really are a very special person, to take the time to reply to me when you are going through so much yourself, has made me vow to be stronger and not wallow in self pity.

I have decided that I will look forward to my chemo and see it as the first step to sorting this mess out. Don’t know how long this positive feeling will last, but I feel much better at the moment.

Thank you very, very much

I will be thinking of you both

Love Linda x

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Hi there Linda,
That’s exactly the way to see the chemo - first step forward out of the mess. Sorry to hear that your diagnosis took so long - i was lucky (?) to have a lump as well as IBC. The people on this site are a great source of support.
hugs
Ruth

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Linda

Don’t beat yourself up, you are not wallowing in self pity. We have all been where you are, and it is a tough time, no doubt about it. Chemo is the first step to help you through this, and hard as it may seem, it is going to get easier, as you then know that you are fighting back with everything possible. You will be on an emotional rollercoaster for a long time, I still am, and have some very good days and then a few really bad days where I just think what if, and look on the bleak side, but I do pick myself up again, I have to for my children.

Just remember we are all here to help you. And never beat yourself for feeling down or sorry for yourself. You are allowed to do this, it is part of human nature.

Take care of yourself and keep in touch. We will help you through this I promise. Even if we never meet each other, you still feel so like you know each other.

Lots of Love
Dawn
x

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Hi Linda, its an awful feeling isn’t it? i thought i just had a touch of mastitis, in my dreams!!! so glad someone has spotted it now for you, and the treatment you get will be good, people on here will support you all the way, don’t be scared to ask qustions, or rant and rave, we’re all here for you

lots of love

Alisonxxxxxxxxxx

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Hi Linda

Sorry you’ve had to join us all here, I too was diagnosed with IBC in May this year, I thought that I had an abscess in my left breast and finally got referred to the hospital, where I expected the abscess to be aspirated, unfortunately I came away with cancer. I started my chemo the following week and half way through a scan showed that my lumps and enlarged lymph node were all gone and back to normal. I now just have one chemo left on 14th Sept and this Thursday I’m off for another mammogram and an appt with the breast surgeon to discuss exactly what surgery I’ll be having.

I had known I had a lump for a while, my daughter had jumped on me and hurt my boob, but as I got pain in the breast everyone kept on telling me that pain is good news and it can’t be cancer, I’d like to get the person that decided that and shoot them. I’d never heard of inflammatory breast cancer and I don’t think that my gp was that aware of it, she didn’t refer me when I first went even though I told her that my mother had died of breast cancer, and she was extremely shocked when she heard of my diagnosis, at least now maybe she’s a little wiser and wont hesitate to refer. I wish there was a bit more publicity about this type of cancer, as it is difficult to spot especially as you don’t always get lumps.

My CT scans and bone scans were all clear thankfully and I’ll keep everything crossed that yours are as well.

Take care

Debbie
x

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Hi all,
Thanks for all your help and support

First chemo due on Wednesday 5th, and have been trying to stay positive but am failing miserably today. Is there anyone out there who were ill before their diagnosis? The doctors have told me that some rare cancers secrete chemicals that have a major affect on the body and as IBC is a rare cancer, that could be the cause of a lot of my problems. But I have been ill for nearly a year now and am scared of the damage that might have already been done.

I am so weak and fatigued most days that I’m unable to do much and the thought of the side affects of chemo on top of that are overwhelming. Sorry to sound such a misery, but not having a good day.

Love and hugs to all

Linda x

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Sorry you are feeling so awful today… I dont know too much about IBC but there are people here who can help you try the telephone on this site where you can talk away especially if you are feeling really low just now… Come on Weds then you can put a target on things… just get to weds and you will get to ask some more questions and hopefully get some answers.

No you are not a misery we have all been there keep the chin up… i know it is really difficult then you are sooooo tired…

Lots of hugs

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Hi Linda

I am sorry to read that you are having such a difficult time at the moment and as wisdens suggested, you are welcome to contact our freephone confidential helpline on 0808 800 6000 for support, a ‘listening ear’ and information from our team of specialist nurses. The helpline is open Mon-Fri 9am-5pm and Saturday 9am-2pm.
Kind regards
Sam
Moderator
Breast Cancer Care

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Hi Linda

Sorry you are upset and feeling down today. I too do not know much about IBC, but there is lots on here who will help and advise you about this and what they have been through.

Good luck with your chemo on Wednesday, and remember it is not as bad as you are fearing, I know, I have been there. It is doable and at least once it has started then you know you are fighting back with everything possible. Good luck and try to stay strong. Easy said I know. But you will have good days and bad. I still have bad days sometimes and they are bad, but then I pull myself up and start again.

We are all here for you, so just come and find us all and we will help you.

Take care and all the very best. Thinking about you.

Take care
Love
Dawn
x

13

Hello all, especially Linda

I too was diagnosed with IBC in June, just like others thought I had an abscess but wrong. I have found it very lonely as only found one other person with this Dx and am so relieved to find others in this thread, so please keep in touch.

Linda, Yes, I too was unwell before Dx, with right sided abdominal pain and feeling as if i permanently had the Flu and very run down and tired. I paid to have a CT scan in Jan and ultrasound all found nothing at that time had no breast symptoms at all. All symptoms continued then mid May left breast became very painful, hard and inflamed, saw GP given antibiotics to no avail and 2 weeks later referred to breast clinic in Chelmsford, waited 2 weeks became so unwell and huge lump getting bigger had to go to A&E who moved my breast clinic appointment to urgent and was seem 3 days later.

Shocked, started Chemo and Linda I felt better after 1st chemo than I had for the year before. I have now had 4 AC cycles which have made me very tired and I still have the abdo pain almost constantly but had 2nd CT and bone scan all clear thank God. I am due to start 4 cycles of Texotere mid Sept and am not looking forward to this but it has to happen.

Linda, you will cope with chemo after your previous year, I have and let’s know how it goes tomorrow.

To all IBCers please feel free to PM me anytime or would it be possible to have an ongoing thread purely for IBC Dx, if so how

Love Helen

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Hi all,

Thanks for all your support, hope you are all doing well.

Helen, you have really put my mind at rest. Sorry you are having to deal with this horrible disease but it was nice to hear from someone who sounds like me.
Feel a little bit better about chemo tomorrow now.

Just a bit worried because I react so badly to any medication these days. Even during my last CT scan, my heartbeat went crazy when they injected the contrast stuff. Nobody seems to now why, as all my heart tests have been fine.

I have been told my treatment will be 4 x AC and then 4 of something I will have to go to Guys Hospital for (can’t remember the name). Then mastectomy, possibly double and then radiotherapy. Can’t take it all in at the moment so just looking to get first chemo out of the way.

Good luck with your next round of chemo Helen, thanks for your encouraging words.

Love to all

Linda x

15

Hello Linda

Just thought I’d add this to make you laugh.

If you like Little Brittain, the sketch where they are judging the entries at the Fete and each time David Walliams is seen projectile vomiting ( hope i’m not putting anyone off their dinner) Well that is what I did in the middle of my CT scan. I was mortified and caused great alarm as they thought I was fitting. It wasn’t until I was on my way home and describing this mortifying event to my OH that he reminded me of this sketch. I fitted it to a T

Whilst this is a s**t disease we must never lose our SOH. Up the revolution!!

Love, Helen

Love, Helen

16

Hi all,

Wanted to reply to this post much sooner but have been having difficulities with password so unable to post.

Wanted to offer some encouragemnet, if possible.

I too have IBC, and can remember so clearly how lonely and frightened I felt with this dx in Nov 2005. The rarity and agressiveness of this particular BC terrified me as I began to research it.Looking back, yes I did feel unwell, but couldn’t quite put my finger on what was wrong. Tiredness/fatigue was a big issue though.

However, I had 6 x FEC followed by 8 x taxotere and also some herceptin thrown in for good measure. The tumour responded very well but, at the end of my chemo, the surgeons were hesitant to operate due to risk of spread.
To cut a long story short I eventually had a mastectomy in Nov 2006 after a second opinion as the cancer had started attacking my skin. It seams the chemo, for me, was the only thing keeping it temporarily under control. I stress FOR ME, I was just unlucky I guess.
I did have a local recurrence in May, I had a WLE and a CT scan showed no spread.

Tomorrow I have my first 3 month check up, and a few bumps/lumps have appeared on the scar line which need to be checked out.

I don’t want to alarm anyone, just the opposite, I currently feel well and am back at work.
The treatment is absolutely doable, you will get through it.

Helen my lovely friend, I will be in touch, (I am writing this under my new user name so hoping you recognise my history!)
Linda, please let us know how you are getting on.
Love
Mabel

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Hello Mabel (love the name)

Great to hear from you, every possible positive vibe is heading your way this morning, was going to ring you but not sure, didn’t want to be too eager to find out the “Good” news we are all hoping for.

lots of hugs and love

Helen

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Hi all,

Having a good day today, just back from the hospital and all my scans are clear. So just the IBC to deal with.

Had my first chemo yesterday and don’t feel to bad at the moment. Feel much more positive and that I can get through this.

Thanks so much Helen and Mabel for your support. Good luck Mabel for tomorrow, will keep you in my thoughts.

Love to all

Linda x

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so glad to hear your good news Linda - hugs, all the best with the chemo

like you i’ve found it great to find others with IBC, there really is a dearth of useful information around. Fortunately for me I also have lobular cancer - so at least i has a lump too! But, i too have felt unwell for a long time, put it down to the aftermath of my father dying, but after listening to you all - now I’m not so sure. Oh, and i put my inflamed boob down to a poor fitting bra!

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Hi Linda,

Excellent news re scan results hunb.
Best of luck with your chemo, the effects are accumalative, so please don’t worry if a few side effects kick in. If you feel a little unwell the cancer is faring much worse!

Good news for me thank yoy for asking.
Am to start zoladex injections tomorrow and am being referred to Hammersmith hosp fpr second opinion re lumps.

Take Care
Love
Mabel
xx