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Is IBC more likely to spread?

34 REPLIES 34
ChristineP
Member

Re: Is IBC more likely to spread?

Peacock - that is great news. I am just over 2 years past IBC dx, and also had a later diagnosis of a second primary on the other side with further treatment, and currently NED too. 🙂
Christine

peacock
Member

Re: Is IBC more likely to spread?

I'm now 5 years (just) past my IBC dx - I remain NED at this stage and my second primary was nothing to do with IBC.

All the best to newcomers

3network3
Member

Re: Is IBC more likely to spread?

Sorry Hazkev to read of your DX. I also had a grade 2 (IBC). I'm now 18 months post dx and feeling very well and do all normal life again. When women on this forum always say there is light at the end of the tunnel, it is very true (well for the good majority of us). Of course BC could come back anytime, but meantime I enjoy my life and not having it spoiled by negative thoughts. Hope all goes well with your treatment.

Love from 3N3 xxx

Guest user
Not applicable

Re: Is IBC more likely to spread?

Hello everyone

I was diagnosed last week as a grade 2 IBC. I have two seperate tumours which are approx 2cm's each and there were cancer cells detected in one of the nodes which was enlarged under my arm. I have been for bone scan and have a CT scan tomorrow. Will have my pre chemo visit on Friday so its all going pretty fast. I dont have all my results yet but I know my cancer is Oestrogen positive but haven't got HER2 result yet. Will start chemo very soon then have MX followed by Radiotherapy.
was not expecting this when I went to screening two weeks ago following a few trips to doctors resulting in a referral.
Im 46 and have three children, daughter age 20 daughter age 7 and son age 4.
pretty scary stuff but I;m staying positive and hoping Ive caught this early.

Hazel
Guest user
Not applicable

Re: Is IBC more likely to spread?

Hi Katherine,
Am starting chemo monday 29th April.
EC chemo, 6x 3 weeks.
Ct scans show some spots on my lungs.
After 3 lots have to have more scans - may have to alter treatment.
Having a day at Centre Parcs with my mum tomorrow and having a Chinese Saturday 🙂
How are you Katherine ?
Katherine2701
Member

Re: Is IBC more likely to spread?

Hi there

ive just been diagnosed with very similar to your diagnosis and wondered how you were getting on?
Juliamt
Member

Re: Is IBC more likely to spread?

Janey try not to panic, it's pretty normal to have to wait, I did. The good news is I am now 8 years in remission despite lymph node involvement and possible liver mets - the chemo did its stuff. You will feel much better when your treatment program starts.
I managed to work right through all of the treatment so hopefully you won't find it as bad as you are anticipating, of course that doesn't suit all, so don't feel pressure to do that - it just helped me keep things normal in a very abnormal situation.
Keep calm and face it head on - thinking of you.
Guest user
Not applicable

Re: Is IBC more likely to spread?

Hi everyone - was diagnosed with IBC 27th March waiting for appointments is really getting to me. Is it normal to wait 1 to 2 weeks ? Easter break causing a delay/backlog. Just want to know what i am faced with although i know i have got to have chemo amd masectomy and then take Tamoxofen.Its already a week since diagnosis. What about cancelations ? Told them i was available anytime ...day or night.
Guest user
Not applicable

Re: Is IBC more likely to spread?

Hello to all of you very lovely people out there. My dear big sister was given the news that she has IBC, a month ago. She's gone through 2 chemos and has to see her specialist tomorrow. Fingers X'd it hasn't spread? The week following her 2nd treatment she has been very withdrawn and sleeping most of the time, bless her. Some may say sleep is the best way to heal? I have suggested that she contacts you guys, but at the moment, she doesn't want to do anything. I know it's early days - 6 weeks ago she was getting ready for her holiday- What is the best way I can help her? I have found this site so helpful,but it's you guys out there and my dear sis who are going through it....and coming out after chemo and everything that follows is so good to hear...xx
Theresa
3network3
Member

Re: Is IBC more likely to spread?

Hi Rackelle

you have most of the treatment behind you, rads will fly past. DX in Nov last year, I now started going to the gym two months ago and really enjoy it, also started working again (self employed dog grooming in my back garden, so I take it as easy as I want lol). Life is s l o w l y going back to "normal". MX side still quite sensitive to touch, well at the side below the armpit.
Hope all is well with everyone,

lots of love from 3N3

Guest user
Not applicable

Re: Is IBC more likely to spread?

Hello to every 1 I'm new on here on was told feb 2012 that I had ibc I'd never heard of it I had 6 rounds of chemo hated it so much I finished chemo June then had a macstantme July and lymp nodes removed was told that when they check it there was 16mm in my breast and 5 of my lymp nodes had cancer in them that scares me i start radiotherapy next wk 15 not looking forward to just can't wait for it to be over ;((
peacock
Member

Re: Is IBC more likely to spread?

Hello ladies

I was looking back on some of the IBC threads (Fitzy's in particular) and came across this - what with one thing and another I haven't replied, sorry for that.

Thanks to all the oldies and newies for support. I had a lumpectomy and SNB on 13 June the surgeon took 9 mms so got clear margins as the tumour was only 5, nothing in the nodes and grade 1. I feel peeved that they keep telling me it's only a pretend cancer , yeah right I wish!!
Unfortunately I have to go down the rads route again which I am starting next week for 25 sessions. As it was both ER and PR positive they're suggesting hormonals/AI but because I have osteoperenia (keep getting fractured ribs for no reason) they think tamoxifen might be better as that helps bones apparently.

It's good to hear from everyone, glad to hear Jan you are coping with work and 5 miles a day walking, you put me to shame. Andi well done on that weight loss, I'm very jealous and hope treatment is going well for the newbies.

xxx

Guest user
Not applicable

Re: Is IBC more likely to spread?

Hi Peacock,
What a shock it must be to have a new primary, I'm so sorry. We are all vigilant about looking for signs but never think that we could be unlucky enough to have a 2nd cancer. I don't visit the site much anymore. Like you've I've begun to put it behind me. I'll visit more often now that I know you need support.
Hi Andi. Good to hear you are still doing well. Congratulations on your weight loss. I actually lost weight during treatment but I've put it all back on again. Don't fancy it as a diet method so I think I'll stick with being slightly overweight. Lol.
Jan x
3network3
Member

Re: Is IBC more likely to spread?

So sorry Peacock to read of your second primary :(. Have you started chemo already or do you get an OP first?
Ch xx

Guest user
Not applicable

Re: Is IBC more likely to spread?

Hi Peacock
Good to hear from you although sorry to hear your latest news. Let us know your next treatment plan, as you know from the past we are all here to cyber support you
. I'm coming up to my annual check which always a worrying time although anything new will come as a surprise because I feel well and my energy levels have finally come back to normal for a lady of my senior years, also OH decided to diet and in supporting him I have finally, 4 years down the line, lost the weight put on through chemo
Take care
Andie
peacock
Member

Re: Is IBC more likely to spread?

Hi all, I was dx with IBC in June 2008, tumour 8.5 cms, had 6 rounds of tax followed by mx and then radiotherapy. Also had Herceptin as HER 2 +.
I had full node clearance and was told that none had cancer in them. I had a DIEP reconstruction in 2011 and had begun to almost forget that I had once had cancer.
I have just been diagnosed with cancer in the other breast but this is a new primary and is an early stage, will know more after seeing my fantastic surgeon later in the week.
Hi to Jan, Andie and Haxted if still reading and hello to all new ladies

3network3
Member

Re: Is IBC more likely to spread?

Julie,

I asked the surgeon about numbers. He said he can tell me as long as I don't dwell on it. He made sure I wanted to know before telling me.

Wow, 2008, that's sounds a long time ago. What was your exact DX, if I may ask? I know not much point comparing, but I do it all the time.

Love from Christine xx

Guest user
Not applicable

Re: Is IBC more likely to spread?

Hi 3network3,
I was reading you post with interest. I was diagnosed with IBC November 2008. I've had chemo, herceptin,radiotherapy, MX (inc full lymph node removal) and now recontruction.I have tamoxifen for 2.5 years and in September 2011 ONC changed tabs to Exemestane. Where did you get your survival stats from? my Onc would never comment when I asked.
Ju x.

3network3
Member

Re: Is IBC more likely to spread?

Back from seeing the surgeon, he said they found 9 nodes and 7 of them had cancer but chemo did away with it. He said I could have had more healthy nodes they don't know that now because chemo can melt them away. The 7 nodes affected didn't have loads of bad cells in them though. The tumour was 7 cm and was still so after the OP, but cells showed a significant response and that's what they would hope for. Margins were clear, but he says there could still be cancer cells in the skin for example, they never know that. So without any treatment my 10 year survival would be 25%. With chemo it increases by 20%, with Herceptin by 30% and Tamoxifen another 11% if it all responds well. He did say though because it has been a big tumour and its node involvment and because its inflammatory character the 10 year survival is around the 50% with treatment working well. So that's it.

What's the Avastatin for?

Christine xx

Brizie
Member

Re: Is IBC more likely to spread?

Hi,

I have IBC started treatment Feb this year; I was grade 3 stage 3 which, I understand is ususal with this type of cancer - you are lucky if its stage 2.

IBC seems commonly to be classed as very agresive and easily spread however I think its an individual journey.....I think a positive attitute and gritted teeth are all you can do - the rest is up to the treatment and your individual cancer.

I have had 3x docetaxtel which have not been as bad as I expected reading the threads, I start 3 x FEC next week. I have also have had 3x Avastin (with a 4th next week) which my oncologist tells me has had fantastic reports. Certainly my mass was 10cm + in the breast to start with 5cm+ lymph node + others involved. Although I don't have a scan until next week I now have no decernable lump in breast or lymph and all the orange peel skin, size difference and pain have gone.

I am not nieve enough to think that its gone, thats not the nature of the cancer, and I will have the mx in early June, but I would say that being offered the Avastin trail was worth it to me and I have had no side effects to speak of.

Good luck, stay positive and try not to worry about what has not happened yet, put your energies into fighting what is there, now.

yellow
Member

Re: Is IBC more likely to spread?

Hi

I was diagnosed with breast tumour 7.5 mm (less than one centimetre) grade 2. Triple Negative No node or vascular invasion in 2008. I Was only offered wide local exision with rads. Chemo was not offered. when I asked why, onc said that it would be considered over treatment. They took the size etc., into account. Almost four years down the line, I should be rejoycing but the fear of it returning never leaves my mind. I have heard how sneaky this disase is, As I said regardless of size, an invasive breast cancer still has the ability to spread. It really is a sh....t disease.

3network3
Member

Re: Is IBC more likely to spread?

yellow you mean it stays an aggressive type even with no node involvment? I have a grade 2. It's all quite confusing to be honest. I keep asking the surgeon and onc questions in order to understand the disease as best as I can. But because it's cancer there remains uncertainty and unanswered questions.

They said to me it's really very important that chemo works well, this will give you a better prognosis and Jan's chemo seemd to have worked really well, from 12cm down to 0.5 and nodes were dead cells.

Surgeon said when the chemo works locally well, that's how well it works on any micro mets.

JanB were your lymphnodes enlarged at initial DX? I had a couple enlarged ones in the ultrasound and they core biopsied it which was positive, so I know my nodes are affected, just don't know how many. On CT scan two weeks after first FEC the nodes were not enlarged anymore. And as I mentioned earlier at the OP surgeon thought they didn't look bad at all. But he said, like with you, he won't be able to tell me after chemo how many have been affected.

Yellow all cancer's have the ability to spread to organs / bones later on even if nodes were not affected, so I would have thought. Hang on just think I remember they don't give chemo if nodes were clear, right? As I say, confusing ...

Christine xx

yellow
Member

Re: Is IBC more likely to spread?

Hi

IBC is what it is Even if treated early with no lymph node involvement etc., it still has the capability to spread to other organs. Many years later in some cases. I am not sure what you mean by other breast cancers!

Guest user
Not applicable

Re: Is IBC more likely to spread?

Hi Christine,

I did have my nodes removed. The surgeon said it was very difficult to tell if they'd been infected because I'd had chemo before surgery. The path results showed no live cancer cells but he said there was evidence of dead cells which may or may not have been cancerous. Either way the chemo did the job. My breast tumour had also reduced from 12cm to 0.5cm.

Good luck with the rest of your treatment. Hope it goes smoothly and fingers crossed for a good path report.

Jan xx

3network3
Member

Re: Is IBC more likely to spread?

JanB

When you say it hasn't spread outside the breast, do you mean your lymph nodes weren't affected? did you have your nodes removed?

I just came out of hospital yesterday after having MX and ANC, the surgeon commented that my nodes didn't look bad at all. I get the path report in two weeks time but I wonder if the node invovlment has much significance at all with IBC?

Happy Annivesary 🙂 xx

Christine

Guest user
Not applicable

Re: Is IBC more likely to spread?

Hi Ladies,

My 3rd anniversary this week which is why I'm visiting the site after a long absence. I was diagnosed with IBC in March 09. I had chemo/mast/rads/herceptin and completed my treatment in Jan 2011.

It is true that IBC is an aggresive form of BC but like any other, if caught early, can be cured. One of the problems is that it doesn't present the symptoms people normally associate with BC and is often missed until it has spread. The treatments are advancing all the time and awareness is improving too. My disease was caught early thanks to my own vigilance and lots of luck. I have a close friend who specialises in cancer research who recognised the signs and told me to persist in getting an early referral to a breast clinic. My tumour was very large but hadn't spread beyond the breast.

I'm very pleased to have remained disease free since my mastectomy in Sept 2009. Can't say it has been an easy ride and I still get very tired. (Late nights are definitely an exception.) I still go to bed by 9 most nights but I'm edging closer to my pension than I ever thought possible after my diagnosis. I still work 30hrs per week in a demanding job and walk 5 miles most days with my dog.

Hope this gives you a positive view of the future.

Jan xx

Guest user
Not applicable

Re: Is IBC more likely to spread?

hi i am a ibc lady dx in sept2010 had chemo first then mx and rec then 15 rads, plus on herceptin since oct 2010 for a year, but had a local reccurrance in skin had nodules removed then had another local reccurrances three months later with chest wall reccurrance also, had ct scan dx 7 weeks ago for them to tell me its spread to lungs now on chemo and herceptin idefiently, i just one of the unlucky ones i supoose, good luck ladies.
lorraine

3network3
Member

Re: Is IBC more likely to spread?

I asked the oncologist today if IBC is more likely to spread, she paused and thought about and said in her experience they have cured patients with IBC. So I didn't get a proper answer as such, but that was the best I could get out of her. She did say though being a stage 3 makes it high risk of coming back, now I wonder if she meant as a local recurrence or as mets?

Christine xx

3network3
Member

Re: Is IBC more likely to spread?

Yes Weme I have, just 2.5 weeks ago, go into hospital on 10th April (a week Tuesday) to have MX on the 11th. The onc told me rads would be 7-8 weeks after OP as the wound wouldn't heal as well as they would like to due to chemo. I know you had rads earlier than that, so I will ask the BS if it heals well if I could have rads earlier, I don't like the thought to leave it untreated for 8 weeks!

Haxted, sorry to read you were diagnosed with bone secondaries right from the beginning. But good to read it hasn't spread anywhere else. I have a lesion on T9 they saw in a CT back in Dec, bone scan inconclusive, so had an MRI spine a few days ago, will get the results on tuesday.

I read recently on a study paper that 30% of IBC ladies are diagnosed with secondaries right from the beginning.

I'll ask the onc and BS if IBC is more likely to spread after treatment or only before treatment when I see them next.

Christine xx

weme
Member

Re: Is IBC more likely to spread?

Hi Christine

I did have 6 x TAC, then mx and ANC. I am starting rads on Tuesday. I am pretty certain I wouldn't have taken 8 TAC, I'd had enough by the end of 6. Have you finished your chemo yet?

Weme

Haxted
Member

Re: Is IBC more likely to spread?

I think it's fair to say that with IBC. spread is more likely to have already occurred by the time a diagnosis is made than with other breast cancers. Thats why we get zapped with chemo first before any surgery; to mop up any cells that may have already broken away from the primary tumour before they settle elsewhere (metastasise - probs spelt wrong!) Thats what happened with me - secondaries diagnosed while undergoing fast-onset treatment for primary. But I'm still here 3 years later with secondaries advancing (slowly) in skeleton but organs still clear. Other IBC ladies remain secondaries-free after longer than that. So it would seem that there isn't a single-thread path for IBC ladies! We're all different and our bodies react differently to the blighters trying to take over....

3network3
Member

Re: Is IBC more likely to spread?

Weme I didn't know you had IBC too. Did you get 3 FEC and 3 Docetaxel? I wonder if it's not better to get 4 of each?

Edited, you had 6 TAC right?

Christine xx

weme
Member

Re: Is IBC more likely to spread?

Hi Christine

I didn't realise you had IBC as well, I too as an IBC sufferer, will be keeping an eye on this thread. It is my understanding that IBC is very aggressive and is more likely to spread which is why they want to get the chemo going as soon as they can.

Franoli, good luck with your scans, let us know how you get on. I think they give scans to everyone though and not just people with IBC so try not to worry too much.

Weme

3network3
Member

Re: Is IBC more likely to spread?

I think it's spreads faster locally, but I can't answer you fully.

Since I'm a IBC lady too I keep an eye on this thread.

Christine xx

Guest user
Not applicable

Is IBC more likely to spread?

Good morning ladies. I am having my first lot of chemo today but still haven't had all the tests to see whether the cancer has spread beyond my breast and lymph nodes under my arm. I was wondering whether IBC is any more likely to spread than other forms of breast cancer? I am having my bone scan and CT scan next week as they wanted to get the chemo underway as soon as possible and will then have a better idea. Any thoughts?

Franoli x