IBC lounge: roll call, support and just a good place to hang out
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Hello everyone. I decided to check in with the IBC Lounge since I have been diagnosed an unwilling participant. Got the news on 1/20/21 and expecting to begin treatment in early February. I was just reading my oncologist's "follow up notes" and discovered that since my "PR" value is a measly 12%, I will likely be classified triple negative. Since I have no idea what any of this means, should I consider this more bad news? Like, how much bad news do I have to get? I'm about done with bad news.
Glad to meet you all, but I hate that we are here.
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Welcome LW422, and I hate that you are joining this club as well. I don't want to weigh in on the triple negative aspect, because that was not my diagnosis, but I will say, I drove myself crazy with reading every piece of research and commentary I could get my hands on after my diagnosis two years ago - and it led me on a terrifying emotional rollercoaster - especially reading all the doomsday statistics that go along with IBC. Finally my oncologist said to me, "Stop reading so much. Statistics are about large populations, and I am not treating a large population, I am treating you. We'll see what works and what doesn't work for you, and take it from there."
In the beginning, I couldn't read a lot on this forum, I found it overwhelming and would usually end up crying reading the names of people who are no longer around. But I have gotten so many great tips for getting through treatment - little things that make a world of difference in the moment - like Ayr nasal gel every night for your nose that no longer has hair - and if you have any questions about things like that, just ask - this board moves a little slowly but everyone has been so very helpful to me, and it also helps to join the boards related to the specific treatment you are in at the time.
Also - for the radiation sores thread that I missed (my husband was diagnosed with aggressive prostate cancer in December - lucky us!) - my best friend was diagnosed the breast cancer last year, she did hyperbaric treatments after her radiation sessions (6 weeks) on the advice of another doctor and her radiation oncologist couldn't believe the results - her skin never blistered or had anything more than some redness. (Anecdotal of course, but I'm always looking for things that can help make the brutal treatment process easier for people who come after.)
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Welcome LW. We'll try to help you through treatment. Triple neg is generally not regarded as a favorable diagnosis, but treatments have improved over the years.
Great post bklynstoops. Sorry to hear about your hubby. Note that while I have both those cancers I’ve been in remission for both for the past five years
I'll add my favourite bit of advice from my onc: never have any pre-conceived notions about any aspect of diagnosis or treatment for this disease.
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Good to know Traveltext - thank you. We're actually considering this a blessing, he has a rare kidney disease (and sarcoidosis) and was in the process of getting reviewed for a kidney transplant when they discovered the prostate cancer. He's still asymptomatic and is considered young for it to have advanced so quickly (Gleason 9), so we're incredibly thankful it was discovered as part of the process. Waiting for his bone scan results now - and now he truly understands my scanxiety.
One more thing LW422 - my favorite writing on cancer, and one that I reread every time "bad news" anxiety pops up - is The Median Isn't the Message by Stephen Jay Gould.
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Hello Bklynstoops and TravelText. I appreciate your supportive words; I suppose the full effect of this life-changing diagnosis hasn't really hit home with me yet. I have decided to stop reading and googling; it just upsets me more. Many posts on this forum have the same effect when you're already terrified.
I appreciate hearing from those of you who have been living with this curse and are willing to share your kindness and experience with newbies like me. I'm just going to follow my oncologists treatment plan and hope for the best. I am a patient at MD Anderson's IBC clinic in Houston.
My best wishes to all, and to your husband, Bklynstoops.
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LW422. You are at one of the very best cancer centers, so that's a huge plus. Always keep us up to date. And go back to those other forums here when you feel you need more support.
If you are into Facebook, go to the private group, Beyond the Pink Moon. This is a huge community and, as you would expect, feedback is instant!
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I posted this in another thread, but I thought it might be interesting to add here as well. I got the pathology report on my 2 skin punch biopsies of my breast, and there is "no evidence of carcinoma" in the skin. Now I'm confused about whether the clinical diagnosis of IBC will prevail; I suppose I thought that the skin biopsy was the true determination of IBC. Any thoughts? I'm pretty sure my MO won't backpedal and change my diagnosis, but I will have a lot of questions for him when I see him on Tuesday.
At any rate I have an aggressive breast cancer so I suppose that's all I need to know.
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LW. You can have IBC without a positive punch biopsy and it is often a clinical diagnosis. Mine was an aggressive tumor which caused an inflamed red chest. The necessary treatment began with chemo since the surgeon would not operate due to the affected skin. Surgery followed, then radiation. That was all completed over six years ago. Keep us posted.
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TravelText--this is all so confusing to me. It seems that there should be a definitive pathology to support the diagnosis, but it is what it is. My treatment will be similar to others... chemo, surgery, radiation. I requested a double mastectomy but the surgeon is pushing back, stating that they want the cancerous breast removed and healed to speed radiation, then the other breast removed later. I guess I don't understand why removing both would be cause for delayed healing, but I'm no doctor. (I don't want to be all healed and done, then have to go back for more surgery, more bills, more recovery time. Blah.)
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Dear LW422, I can only second Traveltext - no positive pathology in many cases, especially when cells are scattered across large surfaces. My wife had it very red (imagine skin burned with boiling water), so PB showed carcinoma, but with light redness no wonder PB shows nothing. That does not mean it is not there (of course I'd wish it wasn't there!). If I were your MO, I'd treat you for worst possible diagnosis, even if it is not there - that would give you advantages to access better drugs, better care, and get more attention to detail from your MO and personnel around you. Keep us posted if you have any questions - if we know some answers, we'll try to answer them:/ Saulius
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LW. Why do you want a double mastectomy?
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Hello Saulius--thank you for the info. My very best wishes to your wife and to you. I believe I will be getting rigorous treatment since I am lucky to live near MD Anderson in Houston where I'm being treated at their IBC Clinic.
I know that IBC is a clinical diagnosis but it's still confusing how some people display the same symptoms and are not diagnosed IBC. I have a lot to learn. Thanks for your kindness, and I know I'll have plenty of questions as my treatment goes forward.
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TravelText--just a personal preference on the double mastectomy. I don't plan any reconstruction and I'm a "D" cup, so I'll look pretty lop-sided with only one. I don't want to deal with prosthesis, and the option of never having to wear a bra again is very appealing. Plus I'd never need another mammogram, or have to worry about BC in the healthy side... it's just the best solution in my mind.
Since my chemo is going to be 24 weeks, I'll have plenty of time to consider all my options.
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LW422, I'm thinking your team wants you to delay the mastectomy on your non-cancerous side because they want to move to radiation as soon as possible. If you were to have the crapalactic luck to have surgical complications or infection on the non-cancerous side, it might delay the beginning of radiation treatments.
But I'm guessing. You should feel free to ask "why can't we remove both breasts in the same surgery" until you get an answer that you understand and are comfortable with.
My team wanted me to wait on removing the non-cancerous side until after radiation. I knew I wanted a DIEP reconstruction and mastectomy/immediate reconstruction is much easier than building a new "breast" from a flat chest.
I spent 18 months lop-sided. I couldn't wait for recon. Like you, I had large-ish breasts and with one missing in action, I felt like I ALWAYS had to wear a bra with a prosthesis.
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SBElizabeth--I'm sure they know best, but I just hate the idea of having everything all healed up and returning for more elective surgery. I suppose I'll have to learn to deal with it, since nothing I want seems to matter to cancer.
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Just dropping by to say that I had my FIRST CHEMO (Taxol) today!! I am happy to report that it went well (and I know it will get worse but one day at a time.)
Hope everyone is doing well.
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Go LW. Okay, best not to expect the worst. My oncologist always said: "Never have any pre-conceived notions about any aspect of your diagnosis or treatment" For me, chemo never got worse after the first treatment!
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Everyone's different. Some of us spend a week in bed feeling tired and achy and nauseated. Others spend a couple of days feeling foggy. I've found it's very common for people to feel completely normal the day of, and the day after their chemo treatment. It's day three when "whatever you're going to feel" begins, and for me, that feeling only lasted two days.
If you experience anything really awful--like a lot of nausea/vomiting, please call your doctor. There are ways to help. SB
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Hi SB! I felt great today so I'm waiting to see what's lurking for me tomorrow. My doctor sent me home with a prescription for nausea medicine and I got it filled. I have read that some people take the medicine as a preventative to keep from having nausea but I don't know enough about that so I'll just hang in there and hope for the best. Thanks for your help; I wish I could sail through treatment like TravelText did!
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Hello all. I hope some people are still reading this thread; it's very quiet here in IBC Land, which hopefully is a good sign!
I have a question for those of you who have gone through chemo with IBC. I notice that after a Taxol treatment, my IBC breast gets "angry" looking... much redder and a bit more swollen. I'm hoping this means the Taxol is in there, doing its thing. Did any of you experience something similar? Thanks!
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Hi LW422,
I check in the group every now and then. About the double m...I had cancer on the left side, tumor, nipple inversion. I wasn’t diagnosed with IBC necessarily at that time because it wasn’t red. In any case I had a surgery chemo double m and then rads. I was a size G. I didn’t want to be lopsided. I didn’t know how reconstruction would be. I was worried it would come back so I ddecided to do a double mast.
right after surgery maybe a month later I got a red spot on my right side now. Nobody thought anything of it and it didn’t get worse. A year later my lymph nodes on right side were big. I re-dx only in nodes,no tumor. They finally did a biopsy on the red patch. Came back +ve. I was shocked. So were they. Becuase they did the biopsy, my skin went nuts.
all this to say I only had cancer in my nodes on right side and my skin on right side, whereas I was only affected on left side the first time. I was surprised there was nothing on left side the second time around and am convinced the cancer got to the right side because I had the double mast and they cut into my right side.I now believe if u don’t have to get something cut, don’t. If I could go back that’s what I would do. Just something to consider. But this is my experience and I know it’s a very personal decision and one that only you must decide. Good luck and remember you r not alone. Hug
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Thanks for that, DancingDiva. I have decided that I will simply follow my doctors' advice for standard of care since hopefully they know what treatment is most effective. I have a few more months before the surgery decisions are made but I'm sure they will promote taking the cancerous breast first to try to get a quicker recovery so I can move on to rads. Not sure how I will feel about removing the other breast by then, so we'll see how it goes.
I'm glad you took the time to post and I hope you are doing well these days.
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I wish people would come back and post on this thread; it is such a help for the few of us who drew the "short straw" of IBC.
My treatment is going well; today was Taxol #4 and a visit with my MO. I am very happy and relieved to report that chemo is actually not an unpleasant experience for me. I have not had any significant SEs and for that I am profoundly grateful.
I had differing information about my AC treatment when I'm done with Taxol. I was originally told I'd have 4 AC, one treatment every three weeks. Now it may be that I am changed to a 2-week cycle DD AC regimen. My MO is waiting to make the final decision.
I asked my MO today about my designation as triple negative since I have a 12% PR+. He said that I am being treated as TN but this does not preclude other future trials or treatment so I will tuck that info away and hope I never need to refer to it. Apparently being ER-/PR+, HER2- is pretty rare, so how did I win membership in all the exclusive breast cancer clubs??
I have a great deal of confidence in my doctor, Naoto Ueno, Executive Director, The University of Texas MD Anderson Cancer Center Morgan Welch Inflammatory Breast Cancer Research Program and Clinic, Houston, TX. I feel I am in the best possible hands, so I will try to let him drive while I sit back and 'enjoy' the ride. (Or at least, try to refrain from back-seat driving.)
I hope all my IBS "siblings by other mothers" are thriving and doing well. Check in when you can.
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Hi LW, it's your IBC brother here. Ive followed this thread for five years now and I can tell you that people come and go, other read it all the time, but don't comment, and others have just moved on. A few people have sadly passed in the time I've been here.
Anyway, glad to hear about your chemo experience. I was expecting the worst and found it really all was doable. My MO said: never have any preconceived notions about any stage of your treatment. Wise words.You are so fortunate to be treated in one of the world's top institutions. This must be huge peace of mind. Keep up your reports.
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Howdy there, TT. Please accept my apology and see that I changed "sisters" to "siblings" in my previous post. I know very well that my "brothers" need to be included but my brain was not engaged, as so often is the case with me.
I'm really psyched that so far chemo has not been bad at all. In fact, my life hasn't changed much at all except for trips to the treatment facility and my lack of hair. Such a huge relief because I had built it up in my imagination to epic horror show. I realize that my experience is unique to me and that others may suffer with chemo, so I certainly feel lucky in this regard.
Hoping more IBCers will check in soon and update us.
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Still here and thriving, LW422! I vividly remember dreading chemo. My only experience was when my dad had lung cancer in 1989, and things have changed a lot since then. That, and Hollywood's depiction of people going through chemo--oh, the drama.
I worked full-time through chemo and if I had scheduled things correctly I wouldn't have needed to miss a single day of work. My ideal would have been chemo Wednesday after work, and I would have been fine Thursday and Friday. Chemo-fog days on Saturday and Sunday, and ready for work on Monday. Instead, I took three days off each round, just because that's what I did. I rode my bike, watched Downton Abbey, baked break, and enjoyed my days off. I felt very, very blessed to have tolerated it so well. I hope your experience continues to be the same.
How are things with being follicle-challenged right now? Have you found your stride with a wig or scarves?
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Hey there SBE; it's nice to "see" you and so glad you are still thriving. I know that everyone has a different experience with chemo, and I am so thankful that so far I have had an easy time of it. I fully expect AC to bring some unpleasant times but I want the most effective treatment so I can join you and other long-term survivors.
I'm thrilled to report that my IBC breast is soft and "normal" in appearance these days, except for the skin punch biopsy scars. No more swelling, though the first couple of days after chemo it looks more red and angry... I just hope that is the Taxol kicking cancer's ass in there.
I still have some hair and don't bother wearing anything on my head except when I'm cooking. Since I leave a trail everywhere I go, I don't want random hairs in dinner!!
I'm coming to terms with having a single mastectomy, too. At first I was hell-bent on having a double, but I've decided that maybe less is more in this case. I want to avoid as many complications as I possibly can, so I'm going to press the SO with the "aesthetic flat closure" thing. I'm going to ask for a plastic surgeon to close the mastectomy if the SO doesn't feel she can leave me with a good result... no dog ears or other junk to deal with in additional surgery.
I'm feeling pretty good about things these days and I have a lot of hope. I avoid any statistics about IBC like the plague; I don't want to know my "odds." I just want to live.
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Dear all, I read this thread all the time. IBC is not what it used to be anymore. Important is to quickly detect and act accordingly. Saulius
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Hello Saulius. Please explain what you mean by "IBC is not what it used to be."
Hope all is well with you.
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Dear LW422, sorry for the wording. I meant doctors are much more aware of symptoms, there are even competence centers that specialize in IBC. It is a scary diagnosis but if diagnosed "on time" outcomes are better, as care is better, drugs are better, there's more choice and chance to overcome drug resistance (IBC can be very drug-resistant), etc. Once I talked to one surgeon and he said that even breast surgeries have improved a lot in past 10 years. So, there's lot's of hope. My wife is fine for now, ultrasound coming next week, so hope and pray results will be good.
Saulius
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