Mom is showing almost all signs of IBC and Im scared.
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Pathology came in.
IDC for the mass near the lymph node (lymphocytes seen on the peripheral so I assume this is in her lymph nodes already) & IDC/DCIS grade 3 for the primary mass on her breast. I assume this will be upgraded to IBC.
She meets with her doc today for further detail.Thanks for the support everyone.
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Sorry to hear this mik though you've suspected your mom had cancer. Still a shock anyways I'm sure.... Please let us know how the appointment goes.... Sending support and gentle hugs to both of you....
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I appreciate that. I'll help my mom make an account for here, as the people here have been nothing by kind to myself and each other. I don't want her to feel alone.
Time to help my mom get through this journey. I pray she will be okay.
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Hi mik93. I'm real sorry to hear about what seems to be going on with your mom. Just knowing though, is a huge step forward in the battle. Yes, like you, I think your mother would find some very good support here, if she is interested in signing on. Fingers crossed that IBC is not in the picture and sending good thoughts to you both.
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Thank you for the kindness. Prior to two weeks ago, I could never imagine this could happen to my mom but here we are.
Do you know what is required for an IBC diagnosis? I don't see any IBC references in the pathology or post-visit reports.
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IBC is most often diagnosed by a punch biopsy. Has this been suggested to your mom?
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I'm not actually sure. I know an ultrasound guided biopsy was used but I'm not sure if that included skin portions. Is that a discussion we need to bring up with the breast surgeon? Her CT work is next Thursday. Is that too long to wait?
Thank you.
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mik93 - A punch biopsy is what I had because they suspected possible IBC, but mine turned out to be IDC. You had said that after the pathology you expected your mother's IDC to be "upgraded" to IBC. What makes you think that? They apparently didn't see a need for a punch biopsy and the previous tests, etc. seemed to show a solid mass. Others on here know far more about this than I do, but my understanding is that IBC is a diffuse situation all throughout the breast with no real solid mass; just "bits" if you will of cancer throughout. From what you've said, your mother has a very distinct mass or two. IDC would be better news generally speaking, than IBC.
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Mik93, it's possible to have a lump of cancer along with IBC, as I had. When my lump was biopsied and proven to be IDC, everyone's attention was directed away from my subtle skin signs of IBC. It wasn't until after a lumpectomy, when aggressive axillary involvement was discovered, that I saw my oncologist. She was the first who insisted on a biopsy of the affected skin and sure enough, the dermal lymphatics were clogged with cancer. IBC.
IBC is not common, as you know. When cancer physicians hear hoofbeats, they look for horses, not zebras. Well, IBC is the zebra, and it runs very fast. The sooner chemo begins, the faster you can shut down the spread of the cancer through the dermal lymphatics.
With garden-variety breast cancer, it's usually safe to take a bit of time to explore treatment options and seek out second opinions. But with IBC, time is of the essence. If your mom's team appears to be approaching her cancer treatment as though it's ok to take weeks to get chemo started (scans, labs, long waits for appointments, stuff like that) you and she must insist on a skin biopsy. However, even with all the clinical signs of IBC, sometimes multiple skin biopsies don't pick up cancer--false negatives.
Your mom needs a skin biopsy, probably from multiple sites, but still, IBC is a clinical diagnosis. Since she has a biopsy that's positive for cancer, IF her breast is showing the signs that meet criteria for IBC, then she has IBC. And she needs to get treatment started, pronto.
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mik93 - sbelizabeth brings up some good points - things I did not know of course. I will add that the surgeon did my punch biopsy and he did two: one of the mass and one of the skin, in keeping with what sbelizabeth has said. In my case both turned out to be IDC and that was later reconfirmed after the surgery and that pathology was done.
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@sbelizabeth, ThreeTree
Thank you for sharing that; my mom does have signs of IBC though some aspects have reduced since the biopsy. I'm curious why they didn't think to pursue that route initially, especially as she is being seen at a breast cancer center.
I will speak to her about IBC and discussing testing with her doctor. And yes, her CT/meet with an oncologist is beginning this time next week. I don't know if that's considered reasonable on an IBC timeline but we'll definitely bring it up.
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mik93,
I may have missed this but have your mothers doctors indicated that they suspect IBC? Or are you assuming that because she has IBC symptoms? The reason I'm asking is that although uncommon, doctors should be able to identify those IBC symptoms as readily as you have and proceed with the appropriate tests, usually punch biopsy. Curious as to how you know her bc will be “upgraded" to IBC soon. Take care.
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mik - If your mother is being seen at an established and reputable breast cancer center, as you say, I would think that they would know/suspect IBC when they see it, based on their knowledge and experience. So far it just doesn't look as if they are suspecting it at this point.
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Thanks ThreeTree. That’s what I was getting at but you put it more succinctly
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Oh, exbrnxgrl - I think you said it very well, but I appreciate the mention. It's surprising, because so often these days I don't feel like I can express myself nearly as well as I would like or used to; letrozole has done a real number on my brain.
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Many physicians have never seen a case of IBC in their entire careers. Even when it presents very obviously, with a hugely swollen breast that's hot and red, a lot of medical providers follow the path of "mastitis" for quite a while, unsuccessfully trying one antibiotic after another. Even for a breast surgeon operating at large hospital known for its cancer care, when the skin signs of IBC are subtle and there's a mass that's been identified by biopsy as cancer, the focus will probably zero in on the mass. Not the subtle skin signs.
Had I been thinking more clearly after the biopsy identified a tiny malignant tumor in my breast, I would have said "hey, what about this area of pink skin that made me concerned in the first place?" And I would have insisted someone do a skin punch biopsy. I wasn't thinking clearly, though, and a skin biopsy wasn't done until much later. I'm grateful to be almost ten years without recurrence now, but I have to wonder how many axillary lymph nodes picked up cancer cells between the time I was diagnosed in October, until I FINALLY started chemo in December.
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As another IBC patient, I'll add my experience. My diagnosis was based on clinical observations ONLY. I had two skin punch biopsies, both NEGATIVE for carcinoma. Skin punch biopsies are a "tool" but are not definitive for the diagnosis.
Mik93--I wish the very best possible outcome for your mother. Let us know what develops with her Dx and treatment.
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Personally, for peace of mind I would ask for the punch biopsy right away, and seek a second expert opinion. A reasonable timeline where there is good reason to consider IBC is now, not in a week. If the current doctors are not too concerned about IBC, that is good, but are they certain that they are not risking too much by not investigating more thoroughly? I would want the punch biopsy and an expert second opinion, because getting this wrong would be bad and I would need peace of mind. The correct diagnosis here is essential to getting the right treatment plan and timing. I don't see why they couldn't fit her in for a punch biopsy; it's not like scheduling a scan for which scheduled access to specialized machines is needed.
I would choose a major cancer center for a second opinion and ask to be seen right away, reminding the intake person that there is already a bc diagnosis and time is of the essence where there is any suspicion of IBC. I would call to arrange this now even while other appointments are pending.
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Hi everyone, sorry for not responding. I just needed a little bit to process things.
Unfortunately it is inflammatory breast cancer. Currently stage 3 but possibly looking like stage 4 due to abnormalities near adrenals and uterus. A PET scan will be done soon to confirm.She is ER/PR positive high-grade with HER-2/neu 2+ FISH pending.
Really scared about this.
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Hello mik93 - I'm so very sorry to hear this. This was what you were so terribly afraid of and it is turning into a reality. I completely understand your need to take time to process. I'm a real "processor" myself. Well, it sounds like all of the tests aren't done yet, so there is still some hope for better news there. The last you mentioned about your mother, she was in good spirits and active, and that's good too. Mine was stage 3 (IDC), highly ER positive also, and I'm still here 3 years later. Granted it's not 10 years, 20 years, or 30 years like it has been for many, but I think your mother has a good shot at continuing to have some good times ahead of her. A lot of the chemo and especially the aromatase inhibitors (AI's) are geared toward ER positive cancers, and those along with surgery really do help and offer hope. Dealing with all of that is no walk in the park, believe me, but the treatments are relatively short term overall (at least, surgery, chemo, and radiation - it all takes about a year), so there is light at the end of that tunnel too.
Like so many on here say, once a treatment plan is in place things will settle down, smooth out a bit, and life for your mother and you will become a little bit easier. The initial testing and waiting for results is absolutely the hardest part of all this treatment business.
If your mother chooses to sign up with all of us, she will find a wonderful and helpful community that will offer her lots of support as she goes through her treatment. I think there are special threads for caregivers and family members like yourself too, where you can find support for yourself. That is really important too - that you find support for yourself too.
My very best wishes here to both you and your mother. Fingers crossed for an ultimately good outcome, even if it will involve some rough patches ahead!
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Sorry about your mom's diagnosis, Mik93. As an IBC patient in treatment I know exactly how hard that is to hear. The good news is, treatments have come a long way and according to my MO, outcomes for IBC patients are beginning to rival other types of BC. (And he should know; he's the head of the IBC Clinic at MD Anderson.) I hate that your mother has been diagnosed but treatment should get started soon and hopefully she will have a good response.
Check out the IBC section of the forum and also the IBC Network forum. My best to you and your mom.
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I'm so sorry to hear that mik93.
Watching my mother go through breast cancer was terrible. I was 20.
We can't know how things will turn out. Some people live long, some people live short, prognostics are basically guesses. It is very hard to hold hope, realism, and pragmatism at the same time, and it's ok to fail.
Get whatever support YOU need that will help take care of you short term and long term - which I'm sure is what *your mother* wants for you. It will also help you be as present with your mother and supportive of her (whatever that ends up looking like, every person/relationship is different) as possible for the rest of your time with her, whether that time is short or long - which I'm sure is what *you* want for both yourself and your mother.
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