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

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  • lw422
    lw422 Member Posts: 1,399
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    @hopeful2020 — I'm so glad you got a bit of reassurance from the MO. Hopefully the matter will be resolved ASAP! I will say again about the skin punch biopsy… I had two of them and neither found any sign of cancer. So that test is not the "end all" for determining IBC.

  • bsandra
    bsandra Member Posts: 1,008
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    Dear lw422, oh, it is an interesting comment - you mean there was IBC and skin punch biopsy did not detect it? Very astonishing… for my wife the biopsy answer was 100% clear that cancer was in the skin - they did not say IBC but clinical-visual signs were undeniable. Hmm… Saulius

  • lw422
    lw422 Member Posts: 1,399
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    Saulius—yes, that is what I mean. I had two punch biopsies; one in the thickened skin and one in the red "bruise" area. Neither showed cancer cells but since IBC is a clinical diagnosis and not pathologic, those results did not change my diagnosis. This was at MD Anderson in Houston.

  • hopeful2020
    hopeful2020 Member Posts: 78
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    @bsandra @lw422 - Biopsy results came back as invasive ductal carcinoma. I guess it’s going to be all over again - 2020 repeat! They didn’t say if there was IBC with it - waiting for the onc to call. This just sucks big time!

  • moderators
    moderators Posts: 8,067
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    We are sorry to hear you are having to go through this again, @hopeful2020! Please let us know what your MO shares after you speak with them.

    If you feel up to it, we have a free weekly group that meets on Tuesdays at 1pm ET and Thursdays at 6pm ET over Zoom for folks who are in active treatment. It could be nice to have the additional support. The registration details are available here:

  • lw422
    lw422 Member Posts: 1,399
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    @hopeful2020 — Aw, I'm so sorry about the new finding; I know you must be feeling sucker-punched. Do they say whether it is a recurrence or a new cancer? (Not that it matters… the crap is back. 😣) I hate that you are facing this again. Let us know what the onc has to say about it. Sending you a virtual hug.

  • hopeful2020
    hopeful2020 Member Posts: 78
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    @lw422 - I am now wondering what this 12 cm non mass area is about. I asked if it was inflammatory breast cancer and she said that it was a clinical diagnosis. Can you let me know how you were diagnosed and what your treatment looked like? How many rounds of chemo? I am thinking of a bilateral mastectomy and hoping to get rid of this misery at least for some time. How was your experience with single mastectomy? How is the recovery with ALND?

  • lw422
    lw422 Member Posts: 1,399
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    @hopeful2020 — I was diagnosed from clinical presentation of an area of thickened skin, a slightly swollen breast, and the ultra sound and MRI results. I met with the IBC team at MD Anderson; a medical oncologist, radiation oncologist, and surgical oncologist at the IBC clinic. They all assessed my symptoms and scans and agreed on the diagnosis.

    I had the IBC Standard of Care treatment; Taxol (once weekly for 12 weeks) and AC (once every 3 weeks for 12 weeks), mastectomy and ALND, then 33 radiation treatments with bolus. Since I was considered triple negative and achieved pCR I had no other treatments though I believe that has changed since 2021. (Now TN IBC gets Xeloda if I remember correctly.)

    The ALND was unpleasant. Hell, it was ALL unpleasant but I'm still here so it was worth it. Here's hoping that they will determine that you don't have IBC, but in either case you know the cancer treatment story. Harsh but doable.


  • hopeful2020
    hopeful2020 Member Posts: 78
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    Thanks @lw422 - did you have a mass? How did you get the IDC diagnosis? No biopsy results? What did they find on ultrasound and MRI? What is Xeloda for? I don’t know if they will irradiate the same breast again after the 33 cycles I had earlier. Did they do ALND as it went to the nodes?

  • lw422
    lw422 Member Posts: 1,399
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    As far as I know, Xeloda is used for triple negative cancers much like AIs, etc. are used for non-triple negative (targeted therapy or hormone therapy). I don't believe they will irradiate your breast again but I really have no idea. I know that AC (chemo) may not be used much anymore, either. Do you have a positive diagnosis yet?

    The ALND is part of the Standard of Care for IBC. I had a swollen node before chemo but my surgical pathology showed NO cancer in any of the 2 levels of nodes they removed… 32 nodes. I was not happy about having all those removed since it pretty much guaranteed me a lymphedema diagnosis. I did develop LE about a year after treatment. I wish ALND was not standard of care but they really hit IBC with the big guns.

    The only mass I am aware of was the tiny IDC tumor found by MRI. It was treated as a non-event after the IBC diagnosis and the focus was on treating IBC.

  • bsandra
    bsandra Member Posts: 1,008
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    Dear hopeful2020, uhh, so sorry for the results:/ What do doctors say, what are the terms and next steps? Saulius

  • hopeful2020
    hopeful2020 Member Posts: 78
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    @lw422 and @bsandra - the doctor was to call yesterday but didn’t hear from her. Hope she will call today. The radiologist only said IDC but didn’t have the markers which was surprising. Why call without the full information. Surgeon’s office wrote and told me it would be the OnC who I will work with now to shrink either with chemo or some kind of a targeted therapy and then go in for surgery. It would be too much to have surgery first. I will now have to have scans to see if it spread anywhere - the one thing they never did first time around!

    I am still trying to understand the 12 cm non mass enhancement - I suppose hiding somewhere in there must be a mass. He said it’s not a 12 cm mass but like a 12 cm disease. Non mass enhancement in the literature point to a wide variety of things including IBC, ILC, DCIS and IDC.

    Last time around they did consider ALND only if during surgery the nodes were packed with tumor. But she ended up taking just 4 nodes of which 2 were clear.

    I am finding it so hard to cope this time around. Mentally this is draining me so much. Losing interest in everything. Work was the only thing that kept me sane last time around. Need to get back in the groove.

    What could have gone so wrong that I didn’t even last 5 years without recurrence? There was some confusion with my Her2 which was identified only after surgery. Ugh! I am so disappointed.

  • lw422
    lw422 Member Posts: 1,399
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    @hopeful2020 — I know you must be feeling defeated right now, but I think as soon as you get some of your questions answered and get a treatment plan in place you will smooth out emotionally. I can only imagine the news of a recurrence or a new cancer; it seems like we never get out from under the threat and fear.

    It would be nice if someone could give you an absolute on the diagnosis, but the "good news" is that the treatment is following IBC Standard of Care. (Chemo first, then surgery.) Not saying that I believe it's IBC but that it's good to have chemo first in case it is.

    I hope you hear from the oncologist today. Do you have a list of questions? I used to have to write things down or I would forget something I wanted to ask. Maybe you can get an explanation of the non mass enhancement and information on the tumor markers. Also, don't hesitate to ask for something to calm your nerves if you think it would help.

  • hopeful2020
    hopeful2020 Member Posts: 78
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    @lw422 - To my surprise the breast surgeon called me about the biopsy. The markers are neg for ER and 5% for PR and Her2 has gone for confirmation by FISH as it had a score of 2. If it comes out positive, it must be my original cancer which was triple positive. With the total hysterectomy we got the hormone triggers out but the Her2 still remained. If Her2 is negative then totally different cancer. Hopefully I will have more answers from Onc. As far as surgery goes, they have put in scan request which I asked for and have scheduled now. If something looks suspicious on CT and bone scans, they will order a PET. If spread, then no mastectomy for me. she does think it looks like early stage due to the non mass as it’s a bit better than having the mass.

    If triple negative, treatment slightly different I guess. No respite on this swelling as she says it’s not a pocket. Asked me not to worry about the pec because it doesn’t typically go up the muscle so might be the fall related. Don’t have to wait for scans, chemo can be started right away. Her2 has a lot more options in addition to chemo so hoping we can get something started quickly that is not too harsh.

    They are going to give me some names of clinical psychologists at the cancer center to talk to. I realized how the emotional cycle went first time around - anxiety, fear, anger, helplessness and acceptance. I am right now at the anger phase and once treatment starts and I accept the situation I will be fine.

    I do have a written list of questions - primarily what went wrong first time around if it’s Her2. She gave me 17 cycles of Her2 antibodies last time. I also notice that when my iron saturation levels are below 5% I land up with trouble. Need my iron infusion again! How are they ruling out IBC - breast surgeon said treatment is same?!?

  • lw422
    lw422 Member Posts: 1,399
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    @hopeful2020 — I'm glad you got some more answers! My markers were ER-, PR 12%, and HER2-. My oncologist said the PR was not significant and designated my cancer as triple negative. I suppose it doesn't matter in the grand scheme of things, but after the IBC diagnosis I did NOT want more bad news (TN). Of course at the time of diagnosis I was a total cancer dumbass; had no idea what any of the numbers and acronyms meant… I just wanted to live.

    My first chemo was Taxol; I found it fairly easy to do. Hated losing my hair, and I made sure to ice my hands, feet, and suck ice chips during the infusions. Happily I did not have any neuropathy nor messed up fingernails!

    You will likely be told that there is no answer for "what went wrong." They likely can't even speculate since no one has a crystal ball and there are no guarantees for any of us. It's just the luck of the draw. I still get weirded out by random aches and pains, and I want to make it to 5 years so my recurrence chances go down, but honestly that doesn't mean much. Just because a random lower percentage of people get a recurrence is small consolation when it's you who draws the short straw. I HATE cancer.

  • hopeful2020
    hopeful2020 Member Posts: 78
    edited March 22
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    https://community.breastcancer.org/en/profile/lw422 - I did have Taxol last time and so quite aware of the icing and hair. There is a wig place by me who makes wigs for cancer folks so even though I lost my hair the wig worked for me as I could go to work once my treatments finished. Need to get that in place again now. I didn’t have issues with nails too much but did lose my eyelashes and eyebrows a little towards the end. Just got everything back and now will start again. But pedicure would really hurt my feet.

    Carboplatin was harder as that made me lose my taste and I had bad diarrhea. I need to ask about the port now.

    I guess 17 cycles of herceptin and perjeta - I guess did not do much. The issue last time was they did not know I had her2 until after the surgery. So maybe if chemo was given first we would have noted something. Who knows. Did you get any tumor work up done? I am wondering strongly if I should get a second opinion from somewhere else.

  • lw422
    lw422 Member Posts: 1,399
    edited March 23
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    Not sure what you mean by "tumor workup?" I did have gene testing and was negative for all.

    I bought 2 wigs during treatment and didn't wear either one a single time. I am very tactile-sensitive and just can't stand the feel of them. I have a huge collection of hats and scarves, though!

  • hopeful2020
    hopeful2020 Member Posts: 78
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    @lw422 - Did they do some genetic testing on your tumor to get more information on its susceptibility? I hear lots of things like Oncotype and Mammaprint? I would have loved to know last time but they never did anything. Are those reliable?

    I some vlogs and videos by Dr Liz O Riordan. Have you heard about her? It was good listening to some of those podcasts. How to cope.

    I just feel so down and depressed to the extent of getting nauseated. My stomach feels tight and I don’t even feel like eating anything. Going to talk to the social worker in breast cancer area - let’s see if she has anything to say. I have t walked for a few days now due to all that is going on.

  • lw422
    lw422 Member Posts: 1,399
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    I had genetic testing (all negative) but no oncotype nor mamaprint. I believe those are for hormone positive tumors only but I don't know anything about them.

    I understand the anxiety you are feeling. I was able to get some relief by taking Ativan or Clonazepam as prescribed by my oncologist. I tried to "tough it out" but taking the medication really did help calm me. I had the world's best MO; he was so calming and understanding which went a long way in helping my mindset.

    I'm not familiar with Liz O Riordan. I got most of my help and support from this forum; sadly the "upgrades" they made were a huge mistake that ruined the forum. Most of the valued contributors have left and not returned. When I was going through treatment there was always someone here to help and support but that is no longer the case. It was a comfort to me to hear from people who knew EXACTLY what I was going through. Such a loss. (If you have read this thread then you have an idea of how it used to be.)

    Take care and let yourself be angry and grieve. You know the emotional toll this takes on us.

  • moderators
    moderators Posts: 8,067
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    Hi @hopeful2020,

    Like @lw422 said, the oncotype DX tests and MamaPrint tests are for hormone-positive breast cancers. We have articles that discuss more about them if you're curious:

    Hope this is helpful. Let us know if you have more questions!

  • traveltext
    traveltext Member Posts: 1,051
    edited March 24
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    @lw422 Liz ORiordan is an old friend who’s built a YouTube channel with lots of useful content. You can find her here: https://lnkd.in/emgzJwbu

  • lw422
    lw422 Member Posts: 1,399
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    Hey TravelText! Hope you're doing well these days. Thanks, but I have no interest in Ms. Riordan or any other "cancer talk" these days. I'm trying to distance myself from it, if you know what I mean. The slow death of this place (that once helped save my sanity) is depressing enough and I am slowly easing myself out of here, too. Such a pity.

    Take care.

  • hopeful2020
    hopeful2020 Member Posts: 78
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    @lw422 - I totally agree with you. Riordan podcasts did help as she has a lot of topics. She is a breast surgeon who had cancer 3 times and how she navigated. Lots of guests who are very positive, which is what I need now. I don’t think I would be listening to those if I am not in the current situation.

    i did have a couple of great friends the last time around. If there is anyone diagnosed recently or have been diagnosed with Her2 recurrence who wants to connect - that would be great!

  • lw422
    lw422 Member Posts: 1,399
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    Hi there @hopeful2020. Hope you're feeling a little better today. I know what you mean; depending on our "cancer status" we have different levels of interest. I was frantic when first diagnosed and searched out every article, video, and forum to find information. I ended up with Google Terror and my doctor advised me to knock it off, haha.

    I'm hanging around here to see how your diagnosis and treatment goes. So keep checking in and let us know what you find out. Have a good evening!

  • bsandra
    bsandra Member Posts: 1,008
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    Dear hopeful2020, I think what they could mean by "non-mas enhancement" is that there's no exact lesion-like mass. It could also be involvement of the skin or other layers under the skin with cells spread without concentration, like a net. This can happen - happened with my wife too. As I said, she was never officially diagnosed as IBC "on paper" but clinically she was 100% IBC. I see that it is more than 24 months after you had chemotherapy (which was successful, as I understand), so one way is to reintroduce Cleopatra protocol, diminish that non-mass feature and go for surgery (without radiation, as I understand). I know, sounds awful but if that what it takes to heal forever… we, humans, are stronger than anything like this. Hugs,

    Saulius

  • hopeful2020
    hopeful2020 Member Posts: 78
    edited March 25
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    @bsandra - Thank you - I have been so nauseated thinking about potential spread and if I will become stage IV. I see your wife was de novo stage IV. Read a few posts from you earlier on this - how is she managing? How do they monitor her situation? How does she feel? I am concerned that I won’t be able to work anymore.

  • bsandra
    bsandra Member Posts: 1,008
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    Dear hopeful2020, thanks a lot for thinking of us. My wife is NED, and she's managing really well - works full time (never stopped during 7 years of treatment history), does everything a "normal human" would do, and we are in the process of bringing up a very lively (too lively sometimes:) our 9 year old. He was 2 when she was diagnosed, and that was scariest time in my life, when it was literally weeks (not even months - liver full of tumors, AST, ALT in many hundreds) for her left:/ The progression was unimaginably fast at first - tumors were doubling in size every week, and doctors were turning the world upside down to try to do all the necessary tests in order to start treatments asap. Interestingly, and to everyone's big surprise, she reacted to treatments so well, that after 4 cycles of THP, everything was gone (just imagine - 7 cm tumor, and liver with uncountable 1 cm tumors, and many axilla lymphnodes involved, one being almost 3 cm). When she locally relapsed in the breast with very fast IBC (sure some cells were left after initial treatments) after 9 months on HP only, chemotherapy (docetaxel) was again returned to HP, she again reacted well but we then after many "second opinions" decided to go for mastectomy, radiation, then another surgery to remove few suspicious LNs, and then again for a cyberknife to 3 other LNs… Apart from constant scans and anxiety while waiting for results, and 3-weekly Phesgo injections, we really cannot ask for more from life and are… simply happy and thankful that we can be here. No one knows what future will bring but science and medicine are amazing, and we really sometimes think that… everything will be okay with us, however delusional we might be. There were so many things that we learned during this journey, too many for me to write them here. And these BCO forums and beautiful people, many of whom are already gone, were no less helpful than doctors. And in many situations here people were much much kinder….

    As for you, if you have enough power and will, gather yourself for a fight, and I am sure, you can win it. And we here will try to support you as much as we can. Many hugs, Saulius

  • hopeful2020
    hopeful2020 Member Posts: 78
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    @bsandra - wow! Truly inspirational and you now have given me hope! Your wife is amazing! You are exceptional!

    How do they monitor her now? Is she still on Phesgo injections? I do have a 9 year old myself and so I understand. I just wish they would start the treatments. Tomorrow is my CT and hopefully next week the bone scan will be done. They still don’t have my Her2 status.

    Had an Accupuncture session yesterday and calmed down a little bit. I suppose the PTSD is more second time around since we know a lot more. Getting some therapy as well. I am sure I will be fine once treatment starts.

  • bsandra
    bsandra Member Posts: 1,008
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    Dear hopeful2020, absolutely, in stage IV you never stop treatments, NED or not… there's simply no medical practice or finished clinical trials with results that would tell what to do with such people:/ She's on 3-weekly Phesgo (114th cycle), and has 4-5 month period MRIs/CTs with ultrasounds in the middle of this cycle, a strategy which I really like.

    Yes, I know what you are talking about - once you'll start treatments and see the improvement that will come after week or maybe even faster, you'll feel much better. Please remember that many treatments work with mechanisms "cells die when they multiply" (to put it in a simple way), so, if there's no acquired resistance and correct treatments are selected, more aggressive/faster disease might mean faster death to bad cells, and this is how disadvantage might be turned into advantage. Lurking/sleeping cells are the most dangerous in the treatment perspective:/ I'd say the most important thing now is to well identify the disease, select good treatments and start them asap.

    Hey, many many hugs to you and your family with the 9 year old - god, I really know how difficult all of that is but given your situation that we know today, you should heal and prepare for grand-children far far away in the future. This is what I wish for you from the bottom of my heart!

    Saulius