I was diagnosed with IBC in May 2007 had 4 AC followed by 4 Docetaxel followed by 6 weeks of rads. Am also on tamoxifen and herceptin. Rads finished in the middle of December and I had a biopsy in January which apparently showed no cancer cells.
At diagnosis I was told that a mastectomy would now be the next step. However I have now been told that I can either have a mastectomy (with or without reconstruction) or continue to have a biopsy every 6 months. I was also told that it is very likely that the cancer will return and when it does it will be elsewhere as well.
Has anyone with IBC not had surgery?
I can’t decide between biopsies or surgery. Help!
I had surgery.
However, my breast still showed signs of IBC after chemo. I was still on herceptin when it began to attack my (breast) skin too. The surgeons were not happy to operate due to risk of spread, however I had an emergency mastectomy 4 months after finishing chemo as the skin was getting worse, followed by rads. 8 out of 9 lymphs were also positive. I was not allowed recon due to skin mets.
You don’t say if there was any sign of cancer in your lymph nodes, as this is a way it can spread through to other parts of the body. I am wondering why they’ve said it will come back if there is no sign of cancer now?
If it were me I would have the surgery and immediate recon. I don’t think I could take the worry of continual biopsies and my nerves couldn’t take the waiting for results each time. I am uneasy with the information you have been given as I have never heard of this with IBC before and would certainly question them more.
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Hi Mabel, thank you for replying. I haven’t been told whether or not lymph nodes have been affected but I received radio to my armpit and collarbone area so presumably they were affected. I have never heard of anyone with ibc not having surgery (unless they already have secondaries at diagnosis) and most people also seem to have surgey before rads.
How accurate can a biopsy be in the case ibc? I am concerned that one part of the breast could be clear but there could still be cancer cells elsewhere in the breast. Am I being stupid?
A punch biopsy to dx IBC is very accurate, however this would be done in the area showing signs of IBC to start with.
Where are they suggesting you have your biopsy? is it to the same area that tested positive before? You don’t want to end up like a pin cushion!
I had 8 biopsies taken from my breast top to bottom outer edge prior to dx. I had a further biopsy when I had my local recurrence, but again you could see the lump on my mast scar.
If you have NED following your previous treatment I think I would ask for regular U/S scans and only if anything suspicious showed up, or if you notice any changes to the breast yourself go with the biopsy idea.
At the end of the day IBC is so agressive checking your breast yourself is your best bet. Anything could be going on between scans/ biopsies and be so microscopic as not to be found but you know your own body better than anyone and the signs to look out for with IBC are very obvious, especially if you’ve been through it once.
Wishing you well whatever you decide hun, if I can help just yell.
Love
Mabel xx
I’ve now heard of someone who had chemo and rads after her initial dx of IBC. She was then NED.
2 years later the IBC returned, same breast, same site. She had mast and immediate recon, and is currently doing very well.
Love
Mabel x
Hi Mabel, thank you for your replies. I feel that the sensible option would be to have the mast with immediate recon or even have a double mast - I really don’t want to be lopsided (do a lot of riding). The trouble is that having finished chemo and rads I am sort of getting back to normal and don’t really want to spending time in hospital and being unable to drive or ride my horse. I don’t actually feel ill at the moment - only a bit tired at times. I don’t feel that my head is ready to cope with such disfiguring surgery as it’s still trying to come to terms with the events of last year. However I am not convinced about NED and sometimes have shooting pains and itchiness in the affected breast. It still feels a lot harder than the other one but this could be due to the rads.
I really appreciate your responses as I haven’t really had anyone to talk to who has gone through something similar. (I’m fed up hearing about other’s benign lumps and the chemo room wasn’t the most friendly).