IBC and IDC
My mom has been diagnosed with Invasive Ductal Carcinoma, but she has also been diagnosed with Inflammatory Breast Cancer "due to involvement of the dermal lymphatics" (per her Breast Surgeon). She has only redness, and does not have any of the other symptoms of IBC -- no dimpling/orange pitting of the skin, not swollen, no heaviness, no bruising, no swelling of the breast. She definitely had a mass, that was more outside the breast than inside.
Originally, they thought it was in infected cyst, and so the Breast Surgeon remove a mass. The pathology report came back with the following:
Moderately Differentiated Infiltrating Ductal Carcinoma; 1.7 X 1.5 X 1.4 cm; Focal dermal lypmphatic involvement noted: ER positive 99%; PR positive 98%; HER-2/NEY Negative 1+; Bloom-Richardson scale grade = 9/9 = Grade III.
Mammogram/Ultrasound/MRI show no additional masses in either breast and the lymph nodes appear clear (although sentinel node testing has not yet been done).
The Breast Surgeon and the Medical Oncologist both say it is IDC and IBC -- but they differ greatly in how aggressive they believe it is. The surgeon believes it to be not aggressive due to the mammo/ultrasound/MRI and the fact that it is not presenting with most of the symptoms of IBC and he has recommended lumpectomy + radiation or mastectomy. The oncologist believes it to be very aggressive and has started her on hormone therapy and is recommending Chemotherapy, then mastectomy, then radiation. The oncologist has ordered an OncoDX test and a KR67 test. So my question is: Why the difference in opinion amongst the two doctors? And, what questions should we be asking to make a more informed decision?
Comments
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I also presented with both IDC tumor 3.5 cm & ibc in 6/09. I also had bone metastasis upon diagnosis. My onc immediately had biopsy, brain MRI, reg MRI, bone scan & Pet scan. He needed to make sure of accurate diagnosis and I had all elements of ibc, which is very aggressive.
We did chemo first and I just had a bi-lateral mastectomy a year after being stable. My onc wanted to get me very stable b/4 proceeding with surgery. I have not had radiation and it has not been recommended yet. They may be holding a few cards for later. I'm also on Femara & monthly zometa for the bone mets. My onc treatment follows protocal and I have done very well on all treatment.
Doctors will have differences of opinion. Do as much research as you can online. If she does indeed have ibc; it has been highly recommended to do mastectomy instead of lumpectomy. ibcsupport.org has more info on inflammatory & many sites such as this one and susan komen. There is also lots of free help from patientresources.net. Look at their cancer guides for treatment options, complications & lots of links for help.
Terri
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Thanks, I have been checking out some of the websites that you mentioned and will definitely check out the others. I guess the OncoDX and KR67 tests will give us a more definite feel for the agressiveness or not of the cancer. Then, we can get to a treatment plan that is best for my mom.
Have any of you had the OncoDX and KR67 tests? If so, were they helpful?
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I had IBC & IDC, my tumor size was only 3mm but I did have skin rash with the "dermal lymphatics" which are the lymph vessels to the skin. I had 5 postivie nodes.
If you mom has ibc it needs to be treated agressively, ibc is different and much more aggressive than other breast cancers. IBC is usually treated with chemo first, mastectomy & then radiation. Sometime more chemo. I just had chemo before mastectomy. I chose bilateral mastectomy with node dissection.
Do your research, get a second or third opinion if necessary. NJ
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Thanks so much -- this is very helpful. Mom has her next visit with the Med. Oncologist next week, so this helps me prepare for questions to be asked. Still have a lot to learn and for the doctors to determine: test results from OncoDX and KR67 tests, recommended course of treatment, status of sentinel node testing when its done, stage of the cancer, see a radiation oncologist (if radiation is recommended), etc. Will continue to check this board and post questions as needed. You all have been so helpful!!
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The KR67 is actually Ki67, and is an indication of how fast the cancer grows. Though my wife was diagnosed with IBC mets to bone, the Ki67 was only 5% - which is considered extremely slow-growing for IBC, which is generally more aggressive. Treated at MDAnderson, by the way.
Almost all IBC patients also have other types, such as IDC or DCIS. However, the IBC ALWAYS takes precedence in treatment protocol. This means chemo first, followed by MRM, followed by radiation. And just so you know, sentinel nodes are generally NOT used in IBC, as an axillary node dissection is done as standard procedure, since IBC generally has already at least some minimal involvement in the lymph nodes around the breast area.
The chemo can take anywhere from 3 to 6 months, after which you get a 2 to 4 week break before surgery, after which you get another 4-6 week break to heal up before radiation, which is generally a minumum of 4 weeks daily.
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Thanks so much SeanE. Both the Breast Surgeon and the Medical Oncologist are saying that the lymph nodes will be tested during surgery using the Sentinel Node Test -- no mention at all of the axillary node dissecton. I will ask about this.
My mom's case has been a bit different in that they originally felt she had an infected cyst (it presented itself as a red, hard mass that was more external to the breast than internal and was about the size of a quarter). So the Breast Surgeon decided to remove it in late January and it was sent for pathology, which determined that it was cancer. The IBC was diagnosed "due to involvement of the dermal lymphatics" per both the surgeon and oncologist. Subsequent mammo/ultrasound/MRI has showed no additional masses in either breast. She has had no additional issues or new symptoms of IBC so far.
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pp729
I have read the above posts and will post a differing opinion, but first I will explain why.
IBC is a disease that has had very little attention until very very recently. Those who have it are only make up somewhere between 4 and 6 percent of all breast cancer patients. Of that very relatively quite small group of breast cancer patients, there is an even much tinier group of breast cancer patients whose characteristics do NOT generally match those of other IBC patients. At present, chemo is often prescribed for all IBC patients by oncs who do not specialize in IBC, because most of the research money has been devoted to the patients with IBC who present with the more dangerous characteristics of it, since most IBC patients have them.
Please evaluate whether or not your mother falls into that tiny subgroup or not. Consider the questions I raised in this thread in this forum:
http://community.breastcancer.org/forum/81/topic/763351
My older sister went through a currently common chemo regimen given to IBC patients (A/C x 4, then surgery, then Taxol x 4), prescribed by a qualified onc who treats all breast cancer patients at a reputable HMO, but who does not specialize in IBC. She had IBC but no mets. After she completed it, he did the common labs and imaging to see whether the chemo had made any difference for her. He admitted she received no real benefit from all of that treatment other than the surgery. (She was unable to receive rads because she had previously had them for IDC of that breast 10 years ago that have never recurred, and for which she only had surgery and 2 weeks of tamoxifen 10 years ago.) He has her on an aromatase inhibitor alone now, and she has had no progression of IBC.
If at all possible, before possibly wasting time and energy and the trauma of chemotherapy in a panic to "throw the book at it", I would have my sister evaluated at a center that specializes in IBC, such as MD Anderson, or by Dr. Christafanelli. My sister continues to go to the nonspecialist, and that is her choice.
I would recommend seeing an IBC specialist in case your mom is one of those who really does NOT fit the common characteristics of general IBC. The generic oncs just routinely throw the most toxic chemotherapy at it as possible. It doesn't hurt them to do so, since there are no garantees that come with it, and they don't personally have to live with the results.
Alaska Angel,
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If it is possible to get the MD Anderson, that is great! I wanted to go there & they wouldn't accept me. I still do not understand why. They were going to do the sentinel node biopsy but could not find it. I did have the standard treatment. A/C dd times 4, 8 single Taxol, 3 1/2 Taxotere; all before surgery & then rads. Hope you get the answers you need. NJ
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I had IBC & DCIS in my other breast. I have now as of Nov been dx with bone mets. I would make sure your mom is getting treated asap. It is very important cause that tumor will continue to grow. My tumor they removed was 12.5 cm. the size of a softball. Everyone her has given great advice and suggestions to you. Take care of your mom it is a long journey. She can fight this!
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Thanks to all of you. My mom sees the Medical Oncologist again next week, so based on your comments, I have added to my already long list of questions. I appreciate all your posts and hope to have a treatment plan to report soon, and for her to get on with this. The onc has already put her on Anastrozole 1mg, an aromatase inhibitor.
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Hello Laides,
Been reading through the posts and have some questions i am sure somebody has experienced. I dealt with TNB almost 2 years ago, fear never leaves me. Recently i have noticed some red like bumps, hives, pimples, rash, not sure what the heavens is going on. Went to oncologist and they told me they are not hives go to a dermatogist so i went and they told me they are hives. They come and go all over my chest, along my neck and one large red blotch on my scar. Who do i believe and how do i get a for-sure answer. I see skin mets mentioned here and wonder if this sounds like anything you ladies have experienced. They do fade and go away but come back in another location. Would skin mets go away? Honestly don't know anybody that has had them except for the brave women here so i can't compare to a buddy.
May God Bless,
Hope
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This is just my opinion, but I feel it's important to say. I am sure you have read how deadly IBC is, and perhaps you've also read that we are just starting to get a handle on successful treatment for it - but there is a long, long way to go. A really long way.
One thing they know - neoadjuvant chemo, chemo BEFORE surgery which is then a modified mastectomy, has improved IBC prognosis immensely. When you cut in to those IBC cells on the breast that are likely there but not yet clinically presenting yet, it *can* take off like wildfire.
Like most people, I'd never be so blunt and push my opinion in such a decisive way if I wasn't very confident that you must listen to the oncologist here. One symptom of presentation is presentation. I do not wish to scare you, but IBC is the most aggressive form of breast cancer. Forgive my bluntness but it is not the time to be conservative with treatment if one wants to live.
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Thanks PaminWV -- I really do appreciate your and other's bluntness -- honestly, its what I need to hear. I have read so much about IBC and frankly, I am frustrated that my mom has two doctors with very different opinions about the aggressiveness or not of my moms cancer, thus with two very different treatment plan recommendations. The breast surgeon diagnosed IBC and IDC, which the medical oncologist concurs with. Yet the breast surgeon tells my mom that he feels it is not aggressive and cites her clear mammo/ultrasound/MRI on both breasts and the belief that the lymph nodes are also clear. I understand that he is trying to be a calming force and not scare my mom away -- he's taking into account that she lives by herself, does not drive, and that I am her only child and live in a different state. Fortunately, we do have family and friends where she lives and they have been immensely helpful. The onc believes it's aggressive, and he's the one who has ordered additional tests (OncoDX and Ki67), he's started her on hormone therapy, and he's telling her that chemo is very necessary. It would be so much easier if we can get both drs on the same page and deliver the message that she needs to start a strong treatment now.
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I am also diagnosed with IBC and IDC, in fact, I didn't present all the symptoms of IBC either. My tumor appeared to be very aggressive, Ki67 is 80%, I have inflammation, but it was not clear from my previous biopsy that I have dermal lymphatic involvement. So for quite a while, i was wishing that I don't really have IBC, until I read this article.
http://onlinelibrary.wiley.com/doi/10.3322/caac.20082/pdf
It was clear for me from that article that IBC presents itself differently, but it isn't wise to dismiss IBC based on individual symptom alone. You have to see the full pictures. And given the aggressiveness of this thing, it's better to treat it properly earlier rather than later.
I am not sure whether I answered all your question well, if I were you, I would choose to go to a more experienced IBC clinic for a second opinion first. Bear in mind most other doctors, even in large cancer centers, may not have enough experience dealing with IBC because it's so rare. So MD Anderson or Fox Chase's IBC clinic can be a good place to go. The travel may appears to be daunting at first but the doctors there have more experience and will answer your questions better.
Ling
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Thanks to you all for your responses. My mom got the results of the Oncotype DX test and the KR67. Oncotype Recurrence rate = 36; KR67 = 80%. Both high and indicative of an aggressive form of cancer. We are lucky that the mammo, ultrasound, and MRI have not shown any additional masses so far in this breast or in the other one. I took your advise and have an appt with Dr. C at FC next week for a second opinion for her.
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Thanks to you all. Saw Dr. C at Fox Chase today and he was WONDERFUL!! So intelligent and knowledgeable, yet so personable and patient and thorough. I cannot tell you all how grateful I am to have found out about him on this forum. He has determined that my mom does not have IBC, but does have IDC with involvement of the skin and lymphatics. His recommendation is that she undergo sentinel node testing during surgery, and a CT scan of the chest and abdomen, plus a bone scan prior to surgery just to assure us that the cancer is not outside the breast. Assuming nothing additional is found in these, the recommendation is a lumpectomy or mastectomy, with FEC chemo (standard, not dense dose), and perhaps radiation. Again, I cannot say how much I appreciate you all and the info you have given us -- especially leading us to Dr. C for a second opinion. God bless you all for your kindness.
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Fantastic news. Wishing your Mom success with her treatment plan.
Terri
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Hi there,
Just wanted to add my voice to this too, as I know IBC is rare.
Your Mother's story of having Doctors with different opinions sounds very familiar to me!
In my case I had redness and swelling but none of the those IBC symptoms. I also had a mass whihc was found *beside* my pre-existing fibroadenoma, which I had had for years are was apparently b9. We did a biopsy and it came back IDC.
So basically my surgical onco said : "it's IBC", and my medical onco said : "I'm not convinced that's what it is".
Through all this, my mother has wanted me to press them about "whether it's really IBC or not. But the fact of the matter (at least in my case) is this:
- IBC is diagnosed clinically these days -- so even though I haven't had the skin punch test to confirm it, I basically need to be considered IBC (and with IBC they need to avoid any invasive procedures until there's been months of chemo).
- IBC is more aggressive than just IDC, so if there's a chance that I have IBC, then as others have said above, it needs to be treated as such -- i.e. neoadjuvant chemo (pre-surgery)....etc.
- Even if in the end we somehow discover it wasn't IBC, in my case it's a tumor over 4cm and with node involvement, so it would still be a stage III, which is similar treatment to IBC.
Of course your mother's particular case is her case alone, we each have our own stories. But I guess what I've decided for myself, and what I've told my mother when she brings it up, is that I'd rather have them be treating me for IBC (i.e. do all they can do in the proper way for IBC) than to have them do something else and realize afterwards that they made a mistake.
Best of luck to you and your mom! I wish you both all the best!
(Oh sorry...I just saw your news re: your Mom and Dr. C... that's great! I guess I'll leave this post up for anyone else in he future who might be dealing with this question)
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Ifeell happy fr u n ur Mom n think u r going in right direction...................... take care
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thank u for PM,I will really try my best to do that.....................take care
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Good points everyone and thanks. The pathology report of the excisional biopsy for my mom did not indicate IBC - it indicated moderately differentiated IDC and also noted focal dermal lymphatic involvement. The IBC was clinically diagnosed by my mom's dr with the only comment that it was diagnosed as such "due to the involvement of the dermal lymphatics" -- she has no other IBC conditions/symptoms. Dr C, as well as another oncologist whom my mom also saw this week, both concluded that this is not IBC as she has no other symptoms -- both stated that the involvement of the dermal lymphatics alone do not lead them to conclude that this is IBC. So we are awaiting a recommendation from my mom's oncologist as to the chemo plan, and she is considering lumpectomy versus mastectomy (but leaning towards mastectomy). Thanks again to you all
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Bonnie -- I will definitely do that when they are available. If you can find your bi-lat mx path report to post again, that'd be great education for me to see what one looks like. I am learning every day!!
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Wanted to jump in here. Nearly stopped chemo just before AC#4 and asked to go to surgery. I too have IDC with Inflammatory clinical presentation. Doc said if I did what I asked, I'd almost certainly wind up with agressive recurrence at op site, very bad to happen. I kept wondering if I'm at lower survival of IBC people or higher of IDC people. You all have answered my questions and I cannot believe I almost basically killed myself. Of course, doc said let things rest for a week and we'd talk again. I shall reluctantly but most surely proceed as they ask, knowing it is possible to have IDC and IBC and it should be treated as tho it were IBC, the risk is just too great to mess up the rather annoyingly long and trying months of chemo before surgery and then endless rads after. If I get recurrence then, at least my doc and I did the very best we could. Thank you so much, girls, for sharing. GG
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Hi dogeyed,
I am really glad that you have decided to carry on your chemo. Yes, IBC is often diagnosed by clinical presentation alone and I think you are making the right decision. I too never have confirmed pathology report on IBC, I just had my surgery and even in my surgical report, they couldn't find lymph-vascular invasion or dermal lymph-vascular invasion. But before my chemo, my breast was red and swollen, and it developed extremely fast.
My pre-chemo path reports were extremely complex, they did 3 biopsies on me in total before the surgery. The first one they found traces of cancer but not enough to even determine the receptor status, the path report did state some angiolymphatic invasion there. They then did a second biopsy with added skin punch biopsy, found no cancer at all. Only in the last one by using the MRI image and getting into the right location did they get enough sample to determine my receptor status, but they didn't find lymphatic invasion there either. I also sent my path slides to another local cancer centre, and the report isn't sure that I have lymphatic invasion in any of the samples.
As a result, my local doctors were never 100% sure whether I have IBC or not, but when I pushed for a diagnose, they gave me the IBC diagnose, and they prefer to treat it more aggressively. I also went to Fox Chase to see Dr. C before my surgery, just by showing him the picture of my swollen breast in the past, he can be sure I have IBC. Regarding to the mixed pathology reports, Dr. C said IBC is always difficult to sample because often you are not sure where the mass is (often there isn't even a mass), the best method is to use MRI guided biopsy but that's seldom used because of the cost and time. Also, even my skin punch biopsy found no cancer in the skin, it could just because the sample is not big enough to cover the skin that is involved. So it's more reliable to diagnose it with clinical presentation. I think that's why Dr C think PP729's mom is not IBC, because she didn't have any clinical presentation. But in your case, if you have clear clinical presentation of IBC, you need to treat it more aggressively.
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Hi ladies. Ling29 is correct -- Dr. C at FC said that he saw no clinical presentation and that was the main reason that he determined that my mom does not have IBC. She has never presented with any of the classic symptoms, and that was why we chose to take her to FC for a second opinion. Dr C was clear to us that the involvement of the dermal lymphatics alone (as is my mom's case) is not sufficient to warrant a diagnosis of IBC. This is also confirmed in the NCCN Guidelines -- on slide #60. By the way, the NCCN guidelines are a wealth of information, and for newbies like myself are really helpful in addition to the info that I've found on this forum.
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Bonnie,
I've also updated in your path report thread, I think that was a brilliant idea.
I think our information serves two purposes, for those who were diagnosed as IBC but might not be, and for those who weren't diagnosed as IBC but could have IBC. And both purposes are important.
IBC is a rare disease and often doctors don't have enough experience diagnosing it, especially for atypical cases. But having more information can help you make the best decision for yourself.
Ling
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Hi ladies. Have not been on the forum in awhile. Wanted to let you know that my mom's mastectomy is Friday (she's the one originally diagnosed as IBC and IDC, but after a second opinion with Dr C is now diagnosed as IDC. Chemo to start sometime after surgery. Thanks again for all your support in this long journey.
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Okay I'm scared. I went through 5 months of chemo starting with a/c for 4 cycles in the 4th one I had an allergic reaction (shortness of breath heart irregularities) but moved on to my 4 cycles of taxotere for which I could only complete 2 due to severe allergies (tongue swelling) and even worse neuropathy hands and feet. Btw a touch screen where I can see it move is my saving grace. Finally had surgery left side masectomy down to chest wall with removal of as many lymph nodes as surgeon could take from my armpit area June 1. Planning session for rads next week to start July 11 with my radiation oncologist. Today I get a call from my medical oncologist (who told me in April he wouldnt be seeing me till September) that they have booked me to be seen after rad treatment on July 21. Why would I be seeing him this early? His nurse was evasive on phone when I asked. I'm sorry to sound paranoid but nothing about my cancer treatment has gone according to anyone's plan least of all mine. I have a radiation oncologist so why am I suddenly being asked to come in for my medical oncologist,,? I haven't even had my surgical followup yet!!!
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Lawgirl,
I believe your medical oncologist would be the one in charge of your condition. Since you are to see him late July and not sooner, I don't believe there is any cause to worry. He may just want to sequence your treatments differently than the ones originally planned.
Terri
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Oh thank god I was really worried as my friend remembers my surgeon saying after surgery he wanted to get me back to my oncologists pronto and I worked up the courage to call in and ask why now when he said not till September and got told well I'd be seeing him next week but he's on vacation from today till the day he sees me is his return ! Thanks Terri I'm glad to know that's all it is ! That explains it lol sometimes it's the obvious that misses us
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