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IBC lounge: roll call, support and just a good place to hang out

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  • Valstim52
    Valstim52 Member Posts: 833
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    I went to MD Anderson for my second opinion I'm in NC and have the benefit of Duke University's cancer center where I live. MD Anderson reviewed my treatment plan, scans, biopsy results etc, and said they would have done nothing different in my treatment and I'm getting the best care where I am. . They did their own bloodwork, exams, and re-tested my biopsy tissue to make sure it was triple negative.

    I have my last chemo 4/18 then on to surgery. Not sure if I will have chemo afterwards, depends on the pathology and result of my surgery. then on to rads


  • Windermeremom
    Windermeremom Member Posts: 1
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    I was also diagnosed with HER2 positive IBC in December 2014. I had an excellent response to chemo, but because there was still 1cm of tumor when I had surgery, I was able to get into the Katherine study. It is to see if Kadcyla ( herceptin connected to a chemo) is more effective than Herceptin alone at avoiding reoccurrence for HER2+. I had a CT scan yesterday, but no results yet. I'm getting Kadcyla until the end of June.


  • mara51506
    mara51506 Member Posts: 6,169
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    Good luck. Hope it is helpful to keep possible recurrence away for longer. Forever would be awesome too. Let us know. I have heard of this drug and study but do not know anyone getting it except for stage IV people and I cannot ask on their boards how it works for them.

  • peckjp
    peckjp Member Posts: 11
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    I am in Cleveland, Ohio. We have 2 good hospital systems but the hospital I started with was just bought in the last 2 years by one of the two systems. The doctors I started with were generalists and should have referred me to the breast cancer center the main hospital has given the rarity of this diagnosis. I've read in more than 1 place only 1-5% get IBC. The first set of doctors wanted to radiate the heck out me than "try" to see if the surgeon could do surgery. They were literally throwing out different ideas and basically grasping at straws because they were under skilled. I moved my care to specialists and once done, the breast surgeon said "I can do it". So I had surgery first then radiation. If it weren't for the radiologist "highly" suggesting I get a second opinion I'm not sure if I'd have the "cancer free" diagnosis today. My lesson, this Dx is too complex to put your life in the hands of a generalist. How do you show your info under the post?

  • peckjp
    peckjp Member Posts: 11
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    just figured out how to show medical history for this. So how many folks are on this forum? MD Anderson claims they only get about 100 cases of IBC per year. I offered to be in their registery hoping I can help someone down the line.


  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Hi Peckip, welcome! I also don't think obsessing about statistics is wise or healthy. IBC is very rare, that is true. It may not be quite as rare as we think though because there may be more cases than are counted due to misdiagnosis since many doctors still don't know about it even though it was identified as a separate and distinct type of BC over 100 years ago. IBC is more aggressive than most other breast cancers, and the recurrance rate is much higher in the first few years following initial treatment, but after that the stats are pretty much the same. Many people with IBC never get to hear that they are NED, or "cancer free" so good for you, I am so glad to hear that. There are a good bunch of IBCers here on this board from all over the world, but in the grand scheme of things only a tiny number of us. I'll point out that many "well" people with IBC don't post here so keep that in mind too. If you are NED there aren't any studies that I am aware of except maybe some vaccine trials, you could do some research about those to see if you qualify.

  • traveltext
    traveltext Member Posts: 1,052
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    It's better to say: "use Google carefully", than "stay off Google", since that's where I found informative IBC posts by supportive BCO members when I was diagnosed a couple of years ago. But, a wealth of IBC information was lost when Bon's "This ain't Facebook" thread disappeared along with 80 odd pages of posts. It's great that PurpleMinion has resurrected it in a new and better form, but we need to build up much of the educative material that was lost when Bon pulled the plug on her thread. it's also great to see Meadow, ibcmets, Hydranne and Kicks chiming in here, and MoreShoes, Geeper and others back sharing their treatments, giving advice and generally supporting others.

    Since IBC is a clinical diagnosis, we get left out of stats by and large. For instance, my onc didn't mention the type, preferring: "IDC with extensive dermal lymphatic invasion". My breast surgeon, on the other hand, took five seconds to diagnose IBC, and she sent me back to the onc to have chemo before she would even attempt surgery. If you think IBC is rare in women, then it is virtually unheard of in guys. Unfortunately, because we are diagnosed later, guys aren't picked up until stage II or III.

    This thread will go forward to become a great source of info on this rare type of BC, and more so if we can restore some of the informative posted links that we have lost from the old thread. To this end I'd like to resubmit a post I saved:


    Mar 5, 2015 06:02AM sbelizabeth wrote:

    Here's a document that describes revisions in the AJCC Staging System for Breast Cancer:

    http://labmed.ucsf.edu/uploads/210/101_new_ajcc_staging_of_breast_cancer_what_has_changed.pdf

    This document states that IBC is clinically diagnosed, not a pathology finding. (See p. 4, "Definition of Inflammatory Carcinoma and pT.") Unlike invasive ductal carcinoma or invasive lobular carcinoma, there is no specific cellular cancer type that can be identified under a microscope as inflammatory breast cancer. It's the behavior of the cancer that makes it IBC, and it's naughty stuff.

    The characteristics of IBC--warmth, redness and thickness of the skin of the breast--are a result of the skin's lymphatic channels being plugged with tumor emboli. Thus, when my small spot of IDC developed a small, red, peau d'orange "umbrella" of dermal lymphatic invasion, there was controversy between my MO, SO, and RO as to whether a diagnosis of IBC could be applied.

    It really didn't matter, though, as far as treatment went. As Bride says, they treated it as if it were IBC and threw the kitchen sink at it.


  • mara51506
    mara51506 Member Posts: 6,169
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    I agree with Traveltext about Google. I do not mean you should never seek out information. I should have clarified that I only refer to the survival stats since they will be different person to person, their overall health and how they respond to treatment. Of course, I would not have found this website or discussion board either without it. Thanks for pointing that out. Edited my blanket statement about google to reflect my opinion on the stats. Don't want people to miss out on good things google has to offer like finding this site or other helpful info.

  • Valstim52
    Valstim52 Member Posts: 833
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    thanks so much Traveltext. Especially about some of the lost information from the other thread. I was dx'd in Dec 2015 and found that thread and poured over it daily. I hope you guys can repost some of the helpful info that was lost and new info as well

    I went to MD Anderson for a second opinion, and found that though they have dedicated MO's for IBC, they had not individually guided as many as I would have thought. Just my opinion. My personal MO has over the past 10 years , had over 30 IBC patients. It is a large NCI cancer center and she stresses to me how though it is rare to have IBC, when you get it the rare stats don't mean as much.

    I'm glad there are forums like this. Thanks Purpleminion for starting this for us and those that were on the other thread for coming over and giving us realistic information.

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Yes, yes, yes. We have the technology, we can rebuild it. I was quite sad to see Bon go, and to lose all that great conversation and knowledge we'd all poured into a couple of threads.

    **Did you know that IBC is never stage 1 or 2? That's part of why the stats suck, we don't (none of us, guys or gals) get diagnosed early, and it's so flippin' aggressive. IBC is rare enough that there are no early detection methods being developed or researched, as far as I know. THAT would be amazing.

  • Valstim52
    Valstim52 Member Posts: 833
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    PurpleMinio, that was so devastating when I realized that no matter what I was a stage 3. I was so shocked to have had a clear mammogram 9 months prior, then have the symptoms appear overnight, and worsen by the day. It still is shocking to me.

    I don't even know if anyone is researching early detection, education of women that though you go for a mammogram there are cancers it can't detect, to be aware of your body. So much i'm still learning.

    I've in this short time come to realize that in some ways it's better to be a stage 3. They throw all resources at you, and at least I'm not in a false sense of security that this is what I call TV breast cancer, where you have a quick procedure, it's pretty and you are cured. I have to admit my previous BC experience I felt that way. It's been 24 years, and no one ever said you could get it again, a new cancer in the other breast I thought I was done. Naive, and dumb.

  • Jujube43
    Jujube43 Member Posts: 79
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    Hi,


    I thought I'd check in. You can see my diagnosis. I have recurrent IBC....it's actually residual since it was part of my original DX. There were two tumors...one more than 8 CM and one under about 6 CM. My surgeon was able to remove all of the larger one, but the one under it was too close to my lungs and chest wall. My surgeon removed what she could, but said it would be too dangerous to go further and there could be severe consequences to try to get it all....so I still have about a 3 CM tumor ....I am taking Femara and so far it's keeping it from growing. I am stable and that's the best I can hope for. I'll take stable and smile! My MO is talking about Ibrance when the Femara stops working...we shall see, the cost could be prohibitive.....I am 72..

  • peckjp
    peckjp Member Posts: 11
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    Thanks Purple Minion - seems like there are many wise and informed members here. I used the internet for research but locate informed groups and compare notes. If the information is older than 2012, I pretty much question the detail as the Perjeta I am on just came out a year ago and so the mortality figures may be better than what some stats show. There are a few IBC foundations/research groups and I want to look into what they offer. I think the MD Anderson group is important because as a research hospital if there is any chance of having a more specific protocol for care "allowed" by insurance for IBC it will be though their work. Other doctors such as the ones I am currently using have to work within the "allowed" formulary. So, while they say I am "cancer free" I do not believe it for one minute. Protocol for HER2 positive is to have 17 (one year) treatments of Herceptin and Perjeta - but no one knows whether the IBC diagnosis would suggest something longer. So they clap their hands declare me CF for now, and then if it comes back, they will call it a reoccurrence. I suspect it may not have really gone away. So my goal is to change that so that future folks with IBC will have a protocol specifically for IBC. Not sure if I'll ever succeed, but I'm sure going to try with the time I have left on this good earth!

  • noor46
    noor46 Member Posts: 7
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    Hi,

    I'm glad I found this topic, since the 'this ain't facebook' topic is gone. I was diagnosed with IBC in nov 2014, about 5cm and at 4 nodes involved and started treatment end of 2014. Although my breast was hurting, it was barely red, but I had an inverted nipple. I had chemo first and from the first one I could tell it was working, since my breast stopped hurting.

    I was very afraid of lymphedema, so after long discussions I had an ultrasound about halfway chemo and because in my lymphnodes there was no more cancer visible, I only had a mastectomy without alnd. After that I had 5 weeks of radiation and active treatment was finished end of september. And now I'm on Tamox.

    I only had mild SE from treatments, but since I take tamox I'm quite stiff. But that is something I can live with.

    I had my first checkup in march and I'm NED, yay

    Noor

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Yay Noor, so good to see you here! I am so happy to hear that you are NED, may you be NED for a very very long time.

  • Valstim52
    Valstim52 Member Posts: 833
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    Noor46 congrats on NED.

  • traveltext
    traveltext Member Posts: 1,052
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    Many people know this site: https://www.theibcnetwork.org

    They have put out brochure summarising IBC HERE

    And here is the cancer.gov fact sheet: http://www.cancer.gov/types/breast/ibc-fact-sheet#q4

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Good resources Traveltext! Thanks. MDA is renowned for its IBC clinic, here's a link to some trials they are running: https://www.mdanderson.org/education-and-research/...

    And here's an IBC specific staging chart:

    image

  • peckjp
    peckjp Member Posts: 11
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    Thanks TravelText and Purple Minion - your information is great! The IBC Network site is great. Pretty current too as I was on Perjeta and Herceptin. Perjecta is pretty new only been around for about 2 years now. The Q&A was very helpful. Is anyone familiar with IBC Research Foundation? Seems IBC Network is doing a pretty good job at raising funds. The "typical" patient is interesting - while I was 57 when diagnosed, I am neither obese or African American. How do they get theses stats? Does anyone know?

  • MoreShoes
    MoreShoes Member Posts: 179
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    Traveltext and Purple minion thank you very much for the links. Very useful information. I'm preparing myself for the results tomorrow.

  • Valstim52
    Valstim52 Member Posts: 833
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    Hello All

    Just finished my last taxol. On to surgery in May, then rads in July.

  • Scwilly
    Scwilly Member Posts: 232
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    Congrats on your last Taxol.

    I found my 12 weekly doses seemed to take for ever. But end they did, and in spite of feeling a bit odd without active treatment, the next stage of surgery soon came around.

    Treat yourself - you deserve it.

    Sarah

    Hug

    Delete following post because I accidently posted twice (was my IPad fault honest!)

  • Scwilly
    Scwilly Member Posts: 232
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    Congrats on your last Taxol.

    I found my 12 weekly doses seemed to take for ever. But end they did, and in spite of feeling a bit odd without active treatment, the next stage of surgery soon came around.

    Treat yourself - you deserve it.

    Sarah

    Hug



  • MoreShoes
    MoreShoes Member Posts: 179
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    The CT scan's results are in. The tumor in the lymphnode in the collarbone went from 8mm to 4mm. The cancer cells in the lymphnode in the right armpit disappeared. The mass in the left breast went from 8.5 x 2.5 x 4.4 cm to 3 x 1.1

    It's good news but I still feel disappointed because it didn't disappear. I still need operation in May and rads in June/July. Valstim, we're in on the same boat.

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Moreshoes, that is fantastic!!! All IBC needs mastectomy so don't worry, that is standard of care. Great great news.


  • Scwilly
    Scwilly Member Posts: 232
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    More shoes: PCR is such a golden result, I remember feeling disappointed not to achieve it. But it not the only way to beat this. So happy for you that you saw your tumors shrink with chemo. Like my advice to Valstim - give yourself a big pat on the back for getting through chemo and a massive treat!

    Sarah

    Hug

  • Valstim52
    Valstim52 Member Posts: 833
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    congrats moreshoes Yes we want PCR, but IBC is such a different beast. It needs a combination of things to beat it. It was explained to me that chemo shrinks it, surgery cuts it, and rads clean it up.

    At least we know our BC is a sneaky beast. Some don't realize it, and get blindsided by residual cells, not a pcr etc.

    My onc has always told me to get to NED it will take some different things. Not just one treatment. One day at a time is how I'm trying to take it. Thanks everyone for the encouragement.


  • Milwmama
    Milwmama Member Posts: 84
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    Val-congrats on getting through Taxol! 8 More for me. Seems like an eternity. Will be glad to get there :)

  • Milwmama
    Milwmama Member Posts: 84
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    Moreshoes-shrinkage (in this case Winking) is very very good!! Now on to surgery and removal :) Clean it up with rads and then NED!!

  • traveltext
    traveltext Member Posts: 1,052
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    MoreShoes, many people are in your boat and many more have been in your boat. Just take each step on the road to recovery as you come to it. Congrats on the results of your treatment to date.