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Diagnosed with IBC

13

Comments

  • traveltext
    traveltext Member Posts: 1,055
    edited January 2016

    True, but the research I pointed to is likely the reason why 23% of us can expect mets before our first five-year term. This is what happened to my friend 18 months ago (also a guy with BC).




  • lisaalissa
    lisaalissa Member Posts: 34
    edited January 2016

    Hi Traveltext!

    I'm wondering if you're confusing "IBC" (Inflamatory Breast Cancer) with BC (Breast Cancer) which includes (but is not limited to) inflamatory breast cancer. Generally speaking, IBC (what is being discussed in this thread) is very rare, comprising 1-5% of all BC cases.

    So while your article is interesting (I took a look--thank you for posting it!) it doesn't specifically address IBC (just BC generally). As Mamiya points out, the treatment of IBC (which varies from BC in a number of characteristics, including the speed of spread) is significantly different from that of other types of BC.

    HTH,

    LisaAlissa

  • traveltext
    traveltext Member Posts: 1,055
    edited January 2016

    Good point about the study dealing with all BC cases LisaAlissa. We know that IBC cases (like, I guess, the people on this post plus me and my mate) received neoadjuvant treatment exclusively, but there must be plenty of others getting this form of treatment without having IBC. I have a huge file on IBC and while I understand that its aggressive nature is a worry, I'm more alert that alarmed because statistics don't tell the whole story. As the saying goes: lies, damned lies, and statistics.


  • kicks
    kicks Member Posts: 319
    edited January 2016

    That 'article' does not address IBC but BC in general. Inflammatory Breast Cancer is different than Invasive/Infiltrating Breast Cancer - Ductal or Lobular. There is no documentation of research done. It does not address rather or not full body scans were done TX to see if there were already mets in other areas.

    Until IBC started being treated neoadjuvantly - a DX of IBC was basically a 'death sentence'. It isn't today - the 'odds' are improving all the time. However, there are are no absolutes on anything in life other than that none of us will live forever on this planet.

  • traveltext
    traveltext Member Posts: 1,055
    edited January 2016

    Yes, the article addresses neo adjuvant treatment generally, but we have to be very careful with the the term IBC. My MO never used it as a diagnostic line. She said: "invasive ductal carcinoma with extensive dermal lymphatic invasion". IBC is really IDC in overdrive.


  • meadow
    meadow Member Posts: 998
    edited January 2016

    Traveltext, I am wanting to understand, do you think that chemo first, then surgery is the right protocol? Given it may stimulate tumor growth, it is still prefered over the stats that Mamiya shared with surgery/chemo....yes? Or are we in a no win situation? I cannot think that way, I am too stubborn, I like to win!

    Hello KicksSmile

  • traveltext
    traveltext Member Posts: 1,055
    edited January 2016

    Meadow. Yes, that's right and, as far as I know, it's the universally used protocol. And, fortunately, neo adjuvant and adjuvant treatments for BC have very similar statistical outcomes as far as survival goes. But we all must face the fact that varying percentages of us all will die of the disease and others with the disease. One comment that comes up repeatedly on these forums is that BC is a crap shoot, so worrying about our individual odds is both futile and pointless.

  • kicks
    kicks Member Posts: 319
    edited January 2016

    So according to you - does not exist. IBC is only IDC that wasn't 'caught' quickly enough even though it forms differently? And other types of BC can be prrsent for years without presenting. Thus that would mean (according to you) there is no such 'thang' as Inflammatory Breast Cancer.

    Where is there documentation that there is no difference with IBC (oh but IBC is IDC according to you) doing neoadjuvant and/or adjuvant Chemo makes no difference in prognosis?

    "We all must face the fact" that there are no guarantees for the next minute. We have all faced the fact we are IBC and done the best known TX for us individually. Thankfully, TX for IBC has progressed and there are quite a few of us who are still alive today having done the best that medicine can do today. Is it perfect - no BUT in the future there will be better TX.

    I have never been told that I was IDC with - --?

  • traveltext
    traveltext Member Posts: 1,055
    edited January 2016

    "So according to you - does not exist." No, it does. "IBC is only IDC that wasn't 'caught' quickly enough even though it forms differently?" Perhaps. "And other types of BC can be present for years without presenting". True with me. "Thus that would mean (according to you) there is no such 'thang' as Inflammatory Breast Cancer." IBC does exist, but its staging and grading is controversial.

    "Where is there documentation that there is no difference with IBC (oh but IBC is IDC according to you) doing neoadjuvant and/or adjuvant Chemo makes no difference in prognosis?" IBC can develop from IDC. I have read in several reports that, overall, the two treatments have similar outcomes. Not for treating one type of BC or the other, just similar outcomes.

    Copy of a post from sbelizabeth on IBC:

    Mar 5, 2015 06:02AM sbelizabeth wrote:

    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.


  • Mamiya
    Mamiya Member Posts: 151
    edited January 2016

    I think the article is interesting, and worth consideration for people who do not have the "inflammatory" type of BC. However, with inflammatory, doctors have learned that surgery before the inflammation is controlled equals very poor outcomes. I also have IDC on my pathology report, but the clinical presentation and the "dermal lymphatic invasion" makes it IBC. Something that does make this different than "regular" BC/IDC is the rapid development - many of us have had clean mammograms within a few months of diagnosis and it's generally thought that IDC grows for years before finally becoming detectable - IBC seems to go from nothing to HUGE within days, so it is very different than other BC's. So, we have to tame the beast before we can cut it out, and the fact that there may be a 23% recurrence rate due to neoadjuvant chemo is something that (at this point in medical history) is just is a factor. Now, having said all of that, I personally didn't have a great response to chemo and am about to start on a clinical trial for immunotherapy - this may be the wave of future cancer treatments... So many variables, so many results v. risks, this cancer stuff is complicated and ugly.

  • MoreShoes
    MoreShoes Member Posts: 179
    edited January 2016

    23% rate of recurrence with chemo, 34% survival rate in general. The odds are not in our favour but we'll keep getting informed and do whatever we can. Things are developing, protocols are changing, many parameters to consider. We only hope that our doctors are doing their best.



  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited January 2016

    Interesting discussion! Hi, Traveltext--I've been quoted...! I'll have to add this to my CV!

  • traveltext
    traveltext Member Posts: 1,055
    edited January 2016

    How did the first chemo go Geeper?



  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hello Traveltext- I've had 2 chemo treatments and go in for my third tomorrow. I've been feeling well.. Thank you for asking😊. I've had no side effects (knocking on wood). I've been doing alot these last two weeks and trying to enjoy life at the fullest. I try not to be home during the weekends. It's 65 degrees here in CA, so the weather is great. It was my mom's 58th birthday yesterday so we had a little party for her and we took her to breakfast this morning.I'm hoping that I get no side effects from chemo.

  • traveltext
    traveltext Member Posts: 1,055
    edited January 2016

    Good on you. Generally SEs show up early, so I'd say you'll be fine. How many treatments are you getting, and do you know the chemo drugs? Keep us posted.



  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    I hope I'm fine. I have 12 weeks of Taxol and I see my oncologist this week on the 29th for a follow up appt. I will keep you posted.

  • Mamiya
    Mamiya Member Posts: 151
    edited January 2016

    Geeper, glad to hear that you are doing well. I had almost no side effects from taxol too, hope that continues for you and that it kicks cancer's ass.

  • traveltext
    traveltext Member Posts: 1,055
    edited January 2016

    Mamiya, be sure to start a new post and document your path through Immunotherapy.


  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Thank you Mamiya! I hope that all of us continue kicking cancers ass. Please keep us posted on your immunotherapy trial. I am so happy for you.

  • Mamiya
    Mamiya Member Posts: 151
    edited January 2016

    Thanks Geeper, and I will do that Traveltext, hoping to really get started SOOOOOOOON (all day baseline tests tomorrow and Thursday, then we start).

  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Thanks Bon for my mom's birthday wishes. I am starting to lose my taste buds. But, hey it could be so much worse.... I had my 3rd chemo treatment and I've lost 7lbs in one week; not intentionally. My husband is worried so he keeps feeding me. He put me on bed rest and said I've been doing too much and running around like a mad woman. So, I am going to rest up and try to do less. Take care and God bless you!

  • meadow
    meadow Member Posts: 998
    edited January 2016

    Your husband is right! Rest, eat. repeat. If you get sick, or underweight and sick, you will have to delay or miss a chemo. I was motivated to not miss chemo, I wanted to keep the cancer cells in retreat, as I was in a fight for my life!

  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    I know Meadow. I am gonna try to take better care of myself. My kids and DH need me. I think I am superwoman sometimes and push myself to the max. I cant do that anymore. I need to focus on getting better and try to eat 5 times a day. I was doing good and maintaining my weight. Last week was just a crazy week and I skipped meals. I am not going to that anymore.


  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi everyone-I hope all of you are doing well. I was just on the "Starting Chemo 2016" thread and saw a post from Valstim52 on Jan.23rd in where she notes her 1st chemo of AC on 01/12, didn't go so well. She was hospitalized for a total of 6 days. She noted she was doing well and due to have her 2nd round on the 25th. I just sent her a PM to see how she was doing. She started around the same time I started and Im worried for her. I hope she gets back on track. If you could please offer her some words of encouragement please that would be great! Thanks all.

  • Mamiya
    Mamiya Member Posts: 151
    edited January 2016

    I will go look her up and send her a note but know that many of us end up doing a stint or two in hospital and things still work out fine

  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi Mamiya, Val responded to my PM. She said that they tweaked her meds and she is doing well.Thank you for sending her a note and words of encouragement, I'm sure she will appreciated.


  • Geeper
    Geeper Member Posts: 91
    edited January 2016

    Hi Bon, yes I am lucky to have him and my family. He has me on sleep, eat, (repeat), he is truly a blessing. I am sorry about Val too, she seems to be doing okay. This is all pretty scary. There are several BC sisters on the "starting 2016 chemo" that are doing well and some not too well, due to port infections, allergy reactions, and low WBC count. It is good to share your journey of up and downs. I've  have minimal SE's and thankful for that (knocking on wood). I saw my MO today and he said my liver enzymes are good, no anemia, and WBC count is good. I got my BRCA results and I tested negative for the gene, happy about that and you were right. I asked him about the ER+9 and he said I was triple negative. I told him that there is always that hope that HER2 can change to positive. Wishful thinking :)  

  • meadow
    meadow Member Posts: 998
    edited February 2016

    I am triple neg, I am NED. It is what I have been dealt, so I do not fear it or obsess about it. Triple neg disease is very responsive to chemo, mine was. I get a ton of info from the thread, "Calling All TNs", I highly recommend it.

  • Mamiya
    Mamiya Member Posts: 151
    edited February 2016

    I read that with cancer in the trials that involve a placebo they placebo group get the standard of care, which is better than getting nothing but still...


  • Geeper
    Geeper Member Posts: 91
    edited February 2016

    Bon-   It's good to know that some TN IBC sisters are doing well, I am not worried. I am concerned with catching a bad cold or flu. My son has a terrible cold since Friday, but I am taking precautionary steps; wearing a mask at home, have lysol, antibacterial wipes and hand sanitizer. I had my 4th chemo session today and I hope it goes well this week. I have looked at the Clinical Trial thread and there is a lot of helpful information on this thread. I don’t want to jinx myself but  my breast is looking much better and the tumor feels smaller. My breast looks the same size as the other, normal nipple, and the mass/sheet is not as thick as it was before. I continue to pray for all of us for strength and healing.


    Meadow-  Great to hear that you are TN and NED. I strive for the same results. I have lurked through the "Calling All TN's" thread and there is a lot of support and great stories on this thread.

    Mamiya- I am rooting for you! Can't wait to hear all about the trial.

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