When to expect shrinkage.????

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1

Hi,
Having had 2 failed AC chemos my tumour has doubled its size. I have now been switched to Taxotare which i had one treatment a week ago. Any body know when i should experience any changes?shrinkage?
My tumour is 10cm still very hard,itchy and hot. When i had it scanned 2 weeks ago the sonographer thought i had IBC is there a test i could have for this?
When i mentioned IBC to my onc she said IBC was just a name and it wouldnt be treated any different to how im being treated now but surly if it is IBC i need to know??? Would that mean i have less chance of surviving? Im so worried… What can i do to get an answer?

Shell.xx
Any ideas

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Shell, don’t have the answers, sweetheart, sorry, but ask Rebecca, she’s really knowledgeable on this. I’m thinking of you.

Cat xx

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Hi Shell
I was only told I had IBC recently and yes your onc is right, it is usually treated with neoadjuvent chemo first to shrink the tumour and in almost all cases a full mx after treatment. There are some good sites on the internet that will give you lots of info, some of which is quite scary but don’t let that phase you. I have been told that these days IBC is no different to other cancers statistical wise. Have you had a bone scan, liver scan and lung xray yet? If not I would insist on those as soon as possible. I would say that from what you describe, you do have IBC. My breast was like a melon in the beginning and no one thought I had cancer at all! I always suspected I had IBC, but as I say it was only confirmed a couple of weeks ago.

Check out breast cancer pals there is a thread all about IBC. I don’t think I can post the link but you should be able to find it, it has been very helpful to me.

I was started on taxotere and was over 8cms to begin with and after 3 tax the tumour had shrunk to 4.5 cms. After 6 tax it has now shrunk to 2.5.

Tax is a fantastic chemo, it has worked for me despite its SE. I think they are doing the right thing for you, take each day at a time and I am sure you will soon see results.

PM or post back if you would like any more info - there are a few IBC posters on here.

Take care

xx

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Peacock-
Yes i have had my bone scan,lungs,heart,liver and kidneys done. They were all clear.
I feel that over the last 7 weeks during treatment i have only become worse rather than better.I feel no positive changes what so ever, i just keep thinking the treatments not working,whats going to happen to me?.
I am very scared and just want this tumour removed.Have you had a mastectomy yet?What test did you have to find out it was IBC?
I will check out you recomended thread, Thanks

Good luck with your treatment

Shell.xxxx

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Hi Shell

For further support and information you are welcome to call our helpline, it’s open today from 9-2 and weekdays 9-5 on 0808 800 6000, it may help you to talk things through with someone in confidence.

Best wishes
Lucy

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Shell,

I can’t post the link but basically it is b c pals (without the spaces) I think I just googled that and managed to find it.

I don’t think there is actually a test for IBC, I think its just a diagnoses from the way the breast is. It is usually (and as in my case) a type of cancer which grows very quickly and aggressively, often causing the redness in the breast, pain and discomfort, sometimes nipple changes (I had a bleeding nipple). My breast never was red in the beginning, but from the time of my mammogram & ultrasound to the actual biopsy (5 weeks later) it had grown massively and was rock hard all around the breast.

The biopsy was done when they were performing a simple procedure to remove what they thought was blocked ducts, and when they started the op they realised it was cancer. I was initially diagnosed with Stage 3 Invasive Ductal cancer.

I developed an abscess several weeks later in the breast and at this time I also had skin eruptions, I mean other areas of the skin appearing blistered and sore. It was at this time that a skin biopsy was taken, which fortunately was clear but then I was told it was IBC.

I can only describe my initial feeling as being like when you need to breast feed a baby. Although my breast wasn’t red, inside it felt like it was burning. Symptoms are different, and you don’t always get all of them.

I haven’t yet had the mx, I sympathise because it is scary to know the cancer is still inside you and wonder what is going on. I firmly believe that I have been treated the correct way, but I have had a good response with tax.

Tax is said to be the creme de la creme of chemos, I am sure it will work for you. Are you Her2+? I have also been having Herceptin since the 3rd chemo which I think has also helped the shrinkage, perhaps this could work for you if you are also Her2+?

My bone, lungs, liver are all clear too so that is a very good sign for us. I worry all the time and sometimes think the worst, but we are human and that is perfectly normal. When will you be starting taxotere?

Cyber hugs to you xxxxxxxx

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Thanks peacock,
I started Taxotare last friday, it wasn’t too bad just aching and alot of tiredness. No sickness which is a big bonus on my part.
My onc mentioned Herceptin after rads so i can only assume i am Her2+…
I did ask about having Taxotere along with Herceptin but my onc said they dont do that combination at my hospital so will have Herseptin last.
I was diagnosed with Invasive Ductal Carsinoma Grade 3 / Aggressive…
My boob too feels like i want to breast feed,sounds silly but it feels full of pressure.I don’t know if i should ask onc again to examine me to see if its IBC, i feel i’m bothering her and i think i have something i don’t…If you know what i mean.

Cyber hugs to you.xxxxxxxxxx
Shell.

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Hi everyone,
I have secondaries in lymphs(axilla and neck),liver,lung and spine.Went on Tax/Herc first which shrunk my liver tumour but didn’t do anything for breast and lymphs.My breast and lymph tumours just carried on increasing in size.I am now on Xeloda and breast/lymphs reduced to practically nothing in four days of taking it.My Oncologist said she has never seen it work that fast ever! Now just waiting to have scans to see how liver/lung are doing.
Alli x