IBC ladies ... Come on in & say HI!

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Hi ladies,

I’m Rebecca & was diagnosed with grade 3, stage 3 IBC in Feb 08, at age 40.

After FEC (no change) and Tax (no change), I had herceptin which gave me a total response on shrinking my 15cm mass.
I then had a mast & ANC and 20 rads.

A year doen the line, I am very relieved to have just had a clear mammo & CT scan, and will be finishing my herceptin next month.

Currently I’m on zoladex and tamoxifen, and am waiting to discuss oophrectomy with the gynae guys.

Look forward to knowing you all better, Rebecca

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Hi Rebecca - that was quick - me and Peacock asked if we could have a place of our own a day or so ago…:smiley:

I’m Theresa - 44 and i was diagnosed late last May. My tumour was 5.5cm at diagnosis with a swollen lymph node showing up on the scan… I had 4 x AC and 4 x docetaxol and by the time of the masectomy on Nov 27th the tumour had shrunk to 2.1cm - but the surgeon said that was more like a 2.1cm piece of string rather than a spherical lump… I had total lymph clearance but they only found 6 and one contained cancer cells…
I had 20 rads and ended up with very bad moist desquamation - but all is healed now…:smiley: I’m now on tamoxifen. I am strongly ER+ve 8/8, PR+ve 6/8 and her2 -ve

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Hi ladies

Rebecca- Glad to here your mamo and ct was clear.xxx

Well im Michelle 37…(Shell) was dx with Invasive Ductal Carcinoma in Aug 08,within 4 weeks of hearing this i was then dx with IBC, Grade 3, 4cm agressive tumor and triple negative…
I had 2 X AC chemos…Tumor doubled…2 X Taxotare…Tumor got thicker and 2 X Carboplatin along side Vinorelbine…Tumor continued to grow.
By this time the tumor was about 15cm, i ended up having a mastectomy and full node clearence,19 nodes from 22 contained cancer.
5 weeks after my op the cancer was back in my chest wall and i developed skin mets.After a CT scan the cancer was found in my lymph nodes to my chest under my collar bone and in my neck…
The cancer is now out of control and is free to rome around my blood system and spread like a fire within me…Last week i was told i have a minimum of 6 months to live.
I am currently on Rads.
As my body rejected chemo there is no more treatment out there for me…I am not going to accept this and have been to the Marsden to see if they can help me…
I am now being put forward for Phase 1 trials, i should know more about them next week so will keep you posted.
Sorry to go on a bit…

Shell
xxxx

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Hi Michelle, I have read your posts on other threads but didn’t know the background to your dx. I just wanted to wish you all the best with anything that the Marsden can do for you. You sound like a very brave lady who has had a very rough ride. All the best to you. LooLoo x x x x

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Well hello to those who don’t already know me!

I’m Jackie, dx in December 2005 aged 44, initially told invasive ductal, they kind of dropped the IBC in later and then implied they were the same thing!

A potted history…
4 x FEC (not a great reponse)
6 X Taxotere with herceptin (had 8 cycles of herceptin first time around)

Referred to surgeons in July 06, they refused to operate, said it would spread like wild fire.

Cancer began to attack my skin, vlister and bleed. Asked for second opinion re surgery. Had emergency mastectomy in Nov 06, 8/9 lymphs affected, cancer imm from chest wall!
25 rads. Tamoxifen
Recurrence Feb 07, I could see the lump during rads treatment.
Femera and zoladex.
Recurrence May 07, skin mets.
Referred to Marsden for 2nd opinion. Onc wanted me to have lapatinib but didn’t fit criteria due to lack of progression.
Progression Feb 09, started LEAP trail, lapatinib/capecetebine, good reponse for almost a year.
Progression.
Taken off trial.
Started extemestane and herceptin, just had 2nd cycle of herceptin. Mets responding.

Although I’ve never been off treatment I feel I’m doing well nearly 4 years down the line. I’m back at work, just attending clinic every 3 weeks.

Phew!

Jackie x

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Loo Loo- Thanks for your support.xxxx
How far are you with your treatment?
Shell
xx

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Shell,

Have the Marsden suggested xeloda?

Jackie x

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Hi again Shell,
Not very far yet. I was diagnosed last week and am due for lumpectomy on the 7th. Had pre op today which was ok.
Best Wishes, LooLoo x x

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Hi ladies

Jackie- The onc at the Marsden did mention an oral chemo,i think it is Xeloda but with a medical name…not too sure…

Looloo- Good luck with your op next week.Do you know if your having any chemotherapy??Where do you live? Im in Lincolnshire.

I am going to see the doctor who does the phase 1 trials on Wednesday, i will let you all know how i get on…

((((hugs))))

Shell
xxx

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HI Shelly,

Yes xeloda is an oral chemo drug. It worked very well for me for nearly a year and is a good ‘maintenance’ chemo drug.

good luck on Wednesdat, I have everything crossed for you,
Love
Jackie x

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Thanks for the good luck Shell. I am more worried about the results than the op. I am totally paranoid. I am from Buckinghamshire. I guess I won’t know if I am having chemo until I have my results. I hope you have had a good day.
Best Wishes to all as always. LooLoo x

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Hello to everyone, those who know me and those who don’t.

I first found a “thickening” in my right breast Apr 08 (yes coming up to that awful date), went straight to the Dr, was sent for mammo & u/s, was told everything was ok, my GP said it was “hormonal”!

A week after my breast had swollen, was rock hard like a melon although wasn’t red or any noticeable difference with the skin but I had a burning within it, and then I started to get nipple blood. So went back to the dr, was sent for a biopsy of the blood from nipple - which came back clear, but was sent to see a breast specialist because they believed I needed a ductal operation to stop the bleeding nipple.

Saw so called specialist, he said “oh no its nothing serious” and booked me in for what is called a pyramidectomy a month later. By this time my breast was even more swollen.

In June 08 I had so called pyramidectomy, which turned out to be a biopsy and a result of IDC was given. Total shock after all these specialists telling me it was ok. I saw an Onc and was started on taxotere in June, and was told the side effects were losing my hair and my nails - LOL - just??? The tumour was said to be more than 8 cm by this stage.

After 2 treatments I was found to be HER 2+ so was started on Herceptin, and after the 3rd tax the tumour was down to 4.5 cm.

I developed a breast abscess in August from the biopsy, and needed it drained and cleaned and at this stage I also had lesions around the breast - I changed hospitals and was then told I had IBC.

Continued with 6 taxotere, and had to finally stop after the 6th one as my body was full of fluid and my weight had shot up by 10 kg.

Had a mx in November 08 and have continued with Herceptin since, scar has healed nicely, they got clear margins and removed 13 nodes of which all were clear.

My only problems now seem to be pain and tiredness. I can’t get to the bottom of painful shoulders, and various other pains of which they are not worried about, but of course I worry all the time. I am seeing a rhumatologist on Monday to see if he can suggest anything as these shoulder pains and arm pains prevent me from getting dressed properly, I am like an old, old woman - no offence to elderly ladies!

Good luck to Shell and Looloo with their forthcoming appointments, and hi again to Theresa and Jackie.

PS sorry for long post, my real name is Carole xx

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Hello,Im new to this,diagnosed with IBC Nov 08,chemo started Dec 08,just had mastectomy,3weeks ago,waiting to start 15 radiotherapy sessions. My problem (apart from worrying) is a painful sensation under my arm spreading to under my shoulder blade,its a bit like cramp and doing my exercises and taking painkillers doesnt help. I cant decide what the hard band I can feel under my arm is,is it my top rib or is it a band of muscle? Can anyone reassure me this is normal? Also my wound feels very tight, Im not very medically knowledgable,if anyone replies to me,keep it in laymansterms please. bye for now, Mags

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Hello Mags - sorry that you have also had to join us - but welcome…:smiley:

I had my op on November 27th 2008 and to be honest it is still quite painful - as you say it feels quite tight… Unfortunatly if anything it seems to have been worse since rads finished… (I know from reading threads on here that ladies with various other forms of breast cancer also seem to say that the muscles seem to tighten up after rads…:frowning: )

Theresa

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Mags - meant to say - have you had your results appointment yet after the op?

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Hi Woody24,

Welcome to the Breast Cancer Care discussion forums. While you’re waiting for your fellow forum users to reply to you question I have put for you below the link to one of BCC’s publications that you may find useful on exercises following your operation. Hope it helps.

breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/101

Kind regards,
Jo, Facilitator

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Hi to all you wonderful ladies,
I am pleased that I have found other people with IBC.I was diagnosed with grade 3 BC with 1 node involved in April 2006 and had a mastectomy and chemotherapy for 7 months. I went back to work in January 2007. I had a reconstruction in May 2007 followed by an infection 6 weeks later. In late Decemeber 2008 I noticed a rash at the top of my reconstructed breast and saw the plastic surgeon who did the reconstruction thnking that it was a further infection. He said that it was Lymthodema and was going to refere me to a clinic. I had an appointment with my Oncologist at the beginning of March who said that he thought he knew what it was and he suggested a biopsy. By now the rash was worse and it sometimes looked bruised. On Friday March 13th I was diagnosed with IBC. My Oncologist painted a very black picture and said that I would be on Chemotherapy continuosly and I would have a small number of years or even less.He said that as it was in the vessels it would almost certainly be in my bones, liver or lungs. I was sent for a CT Scan, bone scan and chest xray. I decided that I needed a week away with my daughter to help us to get our heads around this whilst I still felt well. My oncologist thought that this was a good idea. When I came back i was told that it had spread to the glands behind my chest wall but everywhere else was clear. I felt like I was floating out of the office up for my chemotherapy treatment. I have been prescribed pacataxel and Avastin. I was meant to have chemo every week for 3 weeks and a week off but due to low white blood count I am having both every 2 weeks. I have just had my 6th session. I have not been to work since March and feel guilty to be off again but i don’t think that I can manage at the moment. My hair is really thin and I am almost bald underneath but still some on top. I wold really lke to keep it for a while. It grew back lovely last time but i don’t know if i will ever get to grow it agin. I do hope so.

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Hello talktalkgirl

So sorry that you’ve joined us… what a rotten time you’ve had lately, especially as you had almost gone 2 years without any sign of skin mets, how did they manage to miss the IBC the first time around?

Jackie has the most knowledge about skin mets and I’m sure she’ll drop by when she sees this post to help and support.

My own IBC wasn’t initially diagnosed, at first they just told me it was IDC, but after an infection in the biopsy site whilst having chemo and various skin eruptions, I was then told it was IBC. As it was grade 3 and more than 8 cm in size I had neo adjuvent chemo, then when that finished in Oct I had a mx in November.

I’ve just seen my surgeon and he’s happy that everything is ok for now, but will see me again in 6 months. I asked him if I had gone past the time when a skin recurrence might happen, and he said it can happen up to 2 years with IBC, but is more likely at the beginning.

Is there a possibility of having Herceptin? I am on Herceptin, and will finish probably after August.

It doesn’t seem fair, to lose your hair once is bad enough, but to face losing it again, mine is a fine covering now but I’ve been going buff less since January.

I hope that your bone, chest and CT all come back clear - and wish you well with your chemo.

Take care and chin up

Love P x

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Talktalkgirl - sorry that you have had to join us…:frowning: But welcome…:smiley:

So sorry that you have had to deal with bc again…:frowning: I hope you prove your onc wrong and are posting here for many years…:slight_smile:

Theresa

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Hi Ladies,

Thanks for your replies. I cannot have Herceptin or Tamoxifen so relying on chemo and Avastin I am afraid. I am having a CT Scan on Thursday so I just hope that the resulta are positive.
Hope you are all well and coping.
Take care
T XX