IBC lounge: roll call, support and just a good place to hang out
Hey all, I am starting this thread to give us a place to meet up and check in. We all know this "ain't Facebook" and since some of us have left the boards recently let's have a roll call and start fresh here. Some of the "IBC ladies" and other threads have gone a bit untended so let's see who we are:
I'll go first: dx June 2015 TN IBC, not NED but hoping to get there.
IBC is such a different diagnosis than so many of the other types of BC I think it is really important for us to talk and share and learn from each other.
Comments
-
I was DXd IBC 6 1/2 yrs ago at 63. Finished TX 6 yrs ago (still on Femara/letrozole). Still NED. Still as active as ever and loving every minute of life I have been to have!
0 -
Hey Kicks, hey Hydranne! I am so glad to hear from you both. 6 1/2 years NED is great news! Hydranne, you and I will get there. I hope to get to the point that I can have surgery too, working on that (I currently have skin mets in such a way that surgery would be very dangerous, and the mass itself is too large, but hopeful that I can get there).
IBC is such a beast and so many people get substandard care I am interested in talking about it, trying to share stories and thoughts and educate women (and men!) and just build a small community of support here.
0 -
Public service announcement: https://www.theibcnetwork.org/inflammatory-breast-...
0 -
Here is a good chart RE: staging IBC
0 -
Hi Ladies
HI from a newbie. Your stories give me hope. Was dx Dec 2015. Finished 4 dose dense AC, and only have 2 more dose dense Taxol to go. Scheduled for Surgery in May. Latest scan shows My tumor has run away, can barely feel, and IBC symptoms are almost gone. I had symptoms overnight, red inflamed breast, swollen, and I do have an IDC mass. On top of it am triple negative. Still in shock.
Thanks for creating this thread. I'm 56, been married 36 years. 3 grown children.
0 -
Hey Valstim52, so glad to see you here in the lounge! I am really happy to hear that you are having a good response to treatment and hope you will keep up up to date on your progress! I am also TN and my own case hasn't been so straightforward so I will revel in your success as you go along (and we will all help you over any bumps in the road).
0 -
Well, I'm in. Currently NED but never take anything for granted and never miss my nightly Tamoxifen, which is the gold standard for treating HER2- guys. Like Kicks, I'm goin' for it. Always believe we have to be our own advocates when it comes to our health, so I want to see how people are managing their IBC treatments.
I'm 65, with a partner, and have two kids with kids. Always ready to help others if I can and manage the website http://www.pinktobersucks.com
0 -
0 -
What happened to the IBC, ain't Facebook thread? I had poured out my soul there and the whole thread disappeared.
0 -
I know Moreshoes, it is sad. But here we are again, it's like starting over... The person who started that thread had some misunderstandings on another thread and decided to leave BCO entirely, vowing never to return. I've had my own "issues" that I don't choose to elaborate on in the public forum so I know how tricky this online life can get (I maxed out my PMs for today so I am unable to answer Meadow or send you and a couple of others invites to join us here until tomorrow - so glad you found your way over).
0 -
Thanks for replying. I had written the last message in that thread and I was wondering if I had said something wrong :-)
0 -
I was dx Right Stage 3 IBC, ER/PR- HER2+ in Mar 2015. I am unusual in the fact that my BS did my mastectomy first, THEN did my chemo which was 4 x AC and 2 x taxotere. I stopped Taxotere due to reaching the bottom mentally and physically. Figured if 70 per cent of my chemo, radiation and Herceptin for a year would not help lower my recurrence odds, nothing would. I have 7 more Herceptin to go. I am much more of a lurker than poster but these boards have helped me. Thanks for explaining where the original thread went, I was upset when I could not find it. My mastectomy was done first because initially was being treated for DCIS and was just beginning to show IBC. It had not fully reached my skin. I did ask my onc when learned I was unusual and that it could have been dangerous. I am undecided if I will be reconstructed on the right side or get mastectomy on the left and go flat. I figure I should post my stats since I do feel like I know some of you. This site and IBC thread have been so helpful in all stages of my treatment as well for knowing what to expect, how to deal with different SE, not paying too much attention to survival stats. I know I am my own person and am just happy when I feel decently.
0 -
Let's keep the new thread as postive as it should be - for IBCers.
What went on on other threads is just that and no longer here.
Today is a new day, as will tomorrow be, the past is past and can not be changed..BUT we can build a better and brighter day tomorrow and all tomorrows!
0 -
Hi Mara, welcome! Your story is really interesting, thanks for joining us here! I would be really interested in hearing more about how it came to be that you had surgery before chemo since that is not the way IBC is usually treated. I hope you are doing well and look forward to hearing more from you.
Kicks: you said it, it's a new day and this is a place for those of us who have been diagnosed with IBC to talk and hang out and be as positive as we can be, but also a good place to vent or rant about the trials and tribulations of this stupid cancer. I hope some of the "old timers" who have been long term NED will want to come here and share and talk and encourage those of us who are still working through initial treatments or having a reoccurrence.
0 -
To be honest, I thought it was normal until I read somewhere on the boards that it was dangerous to have the mastectomy first. When I asked the onc about it, he said the IBC had not fully come to the surface of my skin. I had the orange peel and inverted nipple. Never had the red, inflamed skin. He said since the IBC was not fully on the surface, the mastectomy went ahead as originally planned for the DCIS. I was happy to hear I had clear margins but not so happy that it is actually more dangerous to have the mastectomy first. Fingers crossed this did not cause more of a spread. I am thankful to be HER2+ in a way because mentally, I feel somewhat more protected than with chemo and radiation only.
0 -
Also, when I was first diagnosed, I was not mentally prepared to check how IBC would have been treated, I was just devastated at the prospect of chemo and radiation which I have always feared. So I did not honestly know how it should be done until AFTER it was done.
0 -
Mara, don't beat yourself up, it was your doctor's responsibility to know the standards of care for IBC. Having said that, this is why we need to talk about IBC and educate people. My story is different from yours but I didn't have a totally smooth start to my treatment because of uninformed doctors. I will post about that a little later. I am sorry that your doctor didn't do things the way that IBC standards dictate but that doesn't mean that you won't do well, stay positive and keep talking here!
0 -
I will for sure. I am feeling pretty good on the Herceptin only. Just a bit tired and dealing with the odd mouth sore but those are small potatoes that mouth rinse and exercise can get rid of. And whenever you feel ready to share, we are here for you. That much I can tell about the boards here. They are very supportive.
0 -
When I was diagnosed in January 2014, just weeks after an "all clear" mammogram, I'd already known about IBC from somewhere or another (I read a lot). I practically gave a class on IBC for the staff at my dentist's office when I was there for a cleaning and exam before starting chemo. There I was in the dental chair, surrounded by an ever-growing crowd of women who had never heard of IBC. Six months later, one of the techs came to me at my next visit to thank me. The tech had convinced a friend with troubling symptoms to immediately get it checked out, and unfortunately, it did turn out to be IBC, caught earlier than mine. So at least one tangible good came out of an awful experience, and for that I will always be grateful.
0 -
I am the same shycat. I tell people in my orbit about my symptoms too because they are NOT always what you see online. I only had dimpling and an inverted nipple. My skin was somewhat thicker but even the biopsy done only showed DCIS. It was not until the breast surgeon examined me that he confirmed IBC. I was thankful to learn they caught it before it reached the skin and that they managed to cut it out since they did my mastectomy first. I refuse to read more on the survival rates etc. We need info on IBC more front and centre for sure since it is aggressive but when it comes to applying stats to myself, I refuse to do this. My attitude is that even if I only had a 1 percent chance of recurrence, it would not matter how small that was since if it came back I would still be screwed. It also does not matter if I have a 99 percent chance of recurrence if I fell into that 1 per cent. I just go by how I feel, my health and the fact that there are advancements in treating breast cancer that stats don't take into account.
0 -
I saw my PA at 11 that Thurs morn and was sent for new mammo (which turned into an US and biopsies at 1 that afternoon). Radiologist called me Fri morn at 8 with the path. report - IBC. I was told point blank when I saw my Surgeon (DXd on Fri - saw him on Mon) that there was no way that he would thiink about doing surgery on IBC without neoadjuvant chemo. According to him - IBC does not persent with a 'lump' with clear margins - but as a 'nest' or 'bands'. So on Wed, I saw my Rads Dr and Chemo Dr the next day. (My annual mammo was less than 6 weeks old and there were no changes.). So - I started neoadjuvant A/C 17 days (and lots of tests/scans). 2 weeks after last A/C, I had UMX - A/C did it's 'job' - shrunk and got good margins for surgery - never expected 'complete response'. Then did 12 weekly Taxol starting 3 weeks post UMX. A week after last Taxol started 25 Rads.
There are very few who do have the TX plan I had. Most will do 2 different neoadjuvant chemo - I did neoadjuvant and adjuvant and FOR ME - it was the way to o go. My Drs idea was to get 'the Monster' under the best control and then post surgery 'hit' anything that 'might have been hiding'.
We are each unique and there is NO "One Size Fits All"!
OT - There is so SO much negative that is on the 'news' now about how horrible the VA treats Veterans - I can only say that I have gotten fantastic care at/through my local VA. I was immediately outsourced - no time issue at all with my IBC. I have also been immediately outsourced with my eye issues. Certainly there are some issues for some in some areas but I get great care (as does Hubby).
0 -
Welcome Purpleminion,
There has not been much on this thread in a long time but I check to help out if there is someone new.
I was diagnosed ibc, idc with spinal bone mets from the start in 6/09. I had a very good oncologist who ran every possible test before treartment & consulted with UCSF board of doctors. I had brain mri, reg mri, bone scan, pet scan to see where the cancer was and where it wasn't. I like to know what I'm dealing with. The protocal is staight forward for ibc....chemo first, surgery & radiation, then AI's if ER+. We waited a year after chemo to do mastectomy. I was clean for 5 years on Femera & Zometa for the bones and now on Xgeva shots for bones instead.
Every once in awhile I had my spinal bone mets radiated due to pain. Worked well as well as Xgeva.
This past summer, I ended up metastasizes again to the pituitary gland & liver mets. AI's do not work any longer and I'm back on chemo. Chemo is much harder than AI's and I'm exhausted all the time but hanging in there.
I used to post more often to give people hope and tips, but I don't want to frighten anyone with the progression I've had lately. There's no clue to who will do well and who won't even with the same disease.
I hope your treatments work well for you. Remember quality of life is very important. Let your doctors know if some treatments are too much for you. You can count down the weeks if you know how many you will have to go through. It helped me the first time around.
Hugs,
Terri
0 -
I was like Kicks. Surgeon said no way with IBC will he do mastectomy first. So in a span of 11 days from diagnosis with every scan and test imaginable, I was in a chemo chair with AC, and now have 2 dose dense Taxol's left. Will have surgery in May, then possibly more chemo then rads.
I'm glad they were aggressive. My particular cancer center has seen an increase though small, in the the numbers of BC's that are IBC. I have an IDC tumor as well. All not seen on mammo 9 months earlier. I felt it, and saw it in a matter of hours. (literally it got more red, and swollen) I'm so glad I didn't let it go.
I don't read the statistics on the internet anymore. Too old, and too negative. If I progress then so be it. I will face it as best I can I appreciate this thread to see and hear other experiences, even if they are not as hopeful it's good to have a sisterhood/brotherhood.
0 -
I was extremely worried when I learned that surgery should have been done AFTER the chemo. I still can't really comprehend why it was not done that way for me but it was not. I did even clarify the path report was inflammatory breast cancer because I could not believe they would have done surgery when it was so dangerous. No clue but I can't worry about it now. What's done is done and I am just doing the Herceptin leg of my treatment at this point. I can't know if the mastectomy being done first will hurt me. I sure hope not but cannot stress now. Just going to take it one day at a time and let it go for my mental health.
0 -
My story: I had a clean mamo 4 months before waking up feeling like I'd pulled a muscle. A couple of days and some shooting pains made me know that it wasn't a pulled muscle. On another forum I follow we have been talking about standard of care and how there have been quite a number of IBC women who have gotten treatment that didn't follow the standard (like same day reconstruction). I want to share my story because I feel incredibly lucky that I knew better, and I want this kind of mistreatment of IBC patients (who may not have the information) to stop. We have to educate people!
When I was first diagnosed it was at the VA/Federal Health Care Facility. My primary care doctor recognized that I likely had IBC right away but then sent me to the surgeon (appropriately) for an official diagnosis. This is my cautionary tale specifically about the VA: there are some good doctors and some bad ones (they work there part time). The surgeon I saw was not a breast surgeon (although they claimed it was a "breast clinic"). I was thinking ahead because I had read up on IBC by the time I saw the surgeon a few days after I saw my PCM so I talked with this surgeon while he was doing my skin biopsy and I told him that I'd want to have a bilateral mastectomy because I didn't want to go through that twice. He quickly assured me that would be totally unnecessary and that breast conservation surgery has come a long way in the last few years and I would only need a lumpectomy. He further advised me to attend chemotherapy across the street from his private practice where his "buddy" had an office (chemo parlor).
Fortunately I knew enough to run screaming from that situation and was able to get in to a big cancer center to a breast-only oncologist (who was mentored by Dr Ueno who is head of the IBC clinic at MDA, btw) and started appropriate care. Had I not known better I might be dead by now, as my IBC has proven to be very stubborn and even now under the famous Dr C's direct care I am still not fine in any way...
0 -
As I say, I was not aware of standards of care when going through the mastectomy and hearing about chemo. When I was first told about my cancer, I was told it was DCIS. It never did feel warm or swollen. My strong feeling is that since it was felt they were dealing with DCIS, right up until I saw the surgeon about a week or two before the surgery they kept going. I think the IBC just started and it was a coincidence it was caught. Having said that, my feeling since I do know I am unusual is that my treatment should have been change since the breast surgeon told me I had couple of the hallmarks of IBC (peau d'orange, thicker skin, nipple inversion). Since it wasn't, I am trying to accept it and move forward and trust the treatments I have undergone, mastectomy with clear margins, chemo (most of it anyway), radiation and my herceptin will help me from getting a gigantic spread.
0 -
Hi PurpleMinion,
I was diagnosed with IBC TN on 12/17/2015, stageIV with mets to the lung. I knew I had IBC when the symptoms occurred overnight. I had all the IBC symptoms on 12/13/2015. I started chemo on 01/11/2016 (Taxol). I had a CT scan of the chest, pelvis, and abdomen on 03/29/16 and saw my MO on yesterday. I received wonderful news, my lymph nodes, breast tumor/mass, and lung nodules have shrunk over 50%. The chemo is working. I have completed 12 weeks of Taxol and will remain on Taxol until I show no evidence of disease. I've had minimal side effects on Taxol.
Hi Valstim -
I am so happy for you! I am glad you are responding to the chemo.
Best wishes to all!!!
0 -
That is wonderful to hear Geeper. Also glad to hear the Taxol is treating you well. That makes it easier for sure.
0 -
I had a really good response and pretty easy SEs on Taxol, I am so glad that is doing good things for you Geeper!
Mara, I know you didn't know, and that is what I mean when I say we need to spread the word. I don't see why you won't be fine, but I'd like to see the next person in your shoes have the information to ask the questions at least!
0 -
HI Geeper
So happy for you. So glad to see you on this board.
Yes so far good news, and the tumors and swollen lymph nodes, even I can't feel them. The redness has gone away and I had a flaming angry red swollen breast.. So any news is good to me. We have to take the good, small if it may be, and hold on to it.
0
