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Not Where I Wanted To Be, But Here I Am

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lw422
lw422 Member Posts: 1,404

I posted a thread in the "Just Diagnosed" section, but I feel it is time to move to the IBC forum. :(

I'm sure all of you diagnosed with IBC have had the same feelings I'm experiencing today. So far I'm diagnosed with IDC with a lymph node involvement, but have been assigned to the IBC "team" at MD Anderson in Houston. To say that I am filled with dread and anxiety is putting it mildly.

I noticed a pink "bruise" on top of my right breast before Christmas and didn't think much about it... until it didn't change color or go away after a week or so and the breast was slightly swollen. Of course I began googling, scared myself out of my wits, and was able to see my PCP on December 28. She ordered a diagnostic mammo and sonogram so I decided to schedule those at MD Anderson's Undiagnosed Breast Clinic since I live 25 miles from their facility.

Last Tuesday (has it only been 3 days??) I was given a diagnostic mammogram, sonogram, needle biopsy of lymph node, and core biopsy of a breast lump with those marker clips. Then the world turned on it's side as the first result was cancer in the lymph node. Next result; Invasive ductile carcinoma in my breast. Scariest of all was the immediate assignment to the Inflammatory Breast Cancer center, even before the MRI and skin punch biopsy.

My MRI and skin punch biopsy are scheduled for next Tuesday, January 19. Then I meet with my "team" in the IBC clinic at MD Anderson's Mays Breast Clinic on Wednesday, the 20th. So in less than a month everything in my life is different.

A month ago I was worrying about Christmas and Covid-19. Today my world is forever changed. If you have any words of comfort, please share them. For all you "Walking this Path No One Wanted to Walk" with IBC, please share your stories. How did you discover you had IBC? What stage are you in your treatment?

I want to know what I'm facing, and how I will ever get through this. Thanks for reading.

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Comments

  • elainetherese
    elainetherese Member Posts: 1,628
    edited January 2021
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    Bump! I don't have IBC (it's pretty rare), but someone should come along soon to give you some insights. ((Hugs))

  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited January 2021
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    lw422, I'm sorry you're here, but glad you found us. There are a few of us with inflammatory breast cancer in our histories who post regularly. The best thing you can do for yourself right now is stay off Google and don't listen to anyone who wants to quote dismal statistics or talk to you like you're dying next week. The information you'll find on the internet about IBC is frightening, and it's outdated. Treatments have improved steadily over the years--even since my own diagnosis in 2011--and survival is getting better and better. Both my sister and I had IBC, almost at the same time, and we are both well and thriving today.

    I found my inflammatory breast cancer because of a 3-inch diameter pink spot that only showed up right after I got out of the shower. It was a long process, but I eventually wound up with a lumpectomy, chemo, unilateral mastectomy, radiation, then bilateral DIEP reconstruction. It was a marathon. But it was most certainly manageable, one day at a time. Everyone's different, of course--chemo strongly affects some of us with exhaustion, nausea, flu-like feelings of body aches, headaches, bone pain. Others sail right through. I worked full-time and only took a couple of days off each chemo cycle to rest and let the brain fog clear.

    None of this is easy or fun. I felt like my life was on hold for a couple of years, and all I could think about was cancer. There were also amazing people and events I experienced through my cancer journey, and I wouldn't trade them for anything.

    I kept a blog during cancer and I still include the link in my signature line below. I figured if I could relate to just one or two women going through the same life-exploding experience, I'd keep it up. Have a read when you have a moment; you'll probably see yourself in some of the experiences I described.

    Hang on, it's going to be a bumpy ride. But you'll get there. I promise...I PROMISE there are better, happier days ahead. Please PM me anytime if there's questions you want to ask or just to reach out for a friend. SB

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    Thanks, Elaine. We can all use a little "bump" from time to time!!

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    Hello SBElizabeth and thank you so much for your reply. It goes without saying that a response from a long-time survivor does much to improve my optimism. How terrible that both you and your sister had to have this terrible disease, but I'm so glad you both had successful treatment.

    I'm feeling quite a lot of trepidation about what is to come treatment-wise. I don't know a single thing about chemo, radiation, etc. but I suppose they are necessary evils. I am post-menopausal and wondering how being an older patient will be different. I have high blood pressure (that has been MUCH higher lately!) but other than that I'm in pretty good shape. I'm going to pepper the doctors with questions, particularly around quality of life matters.

    I suppose my fears are stoked by the fact that my brother was diagnosed with lung cancer last July and we buried him in August. I had barely gotten over the shock of his diagnosis and he was gone. Cancer is so ugly and cruel.

    I'm finding the hardest part so far is telling my friends and family. I don't want them and my sweet husband to have to "have breast cancer", too.

    I appreciate you offering to DM about any concerns I have. I may take you up on that! For the most part, I'd prefer to post in the open forum so that others who have similar questions and concerns can get some answers, too. Seems that there just isn't much for the IBC patients, since thankfully our numbers are fewer.

    Thank you again for your response; I appreciate it more than you know.

  • Nel
    Nel Member Posts: 597
    edited January 2021
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    lw422

    I was diagnosed with IBC almost 10 years ago, stage 3 b. 8 years ago it spread to my adrenal gland so I have been stage 4, mBC for that time. . Never heard of it til I received the diagnosis I was 56 when dx initially. My initial treatment was about a year and a half - chemo, unilateral mastectomy, chemo, radiation. I was fortunate to have a job at the time where I could work from home, take naps. There were times and situations that required face time - board meetings and special events, but I just planned ahead saving up my energy prior to. Was not always easy, but was doable. I have been fortunate that I have tolerated treatment relatively well. I lost my hair twice - with both rounds of chemo. You will find your way with this I only wore my wig twice, generally going bald or wearing a baseball cap - just found it uncomfortable and didnt care what folks thought.

    I would recommend caution with who you share and what you share until you have a definite dx and treatment plan and even then dont feel like you have to be the one to answer all the texts, calls or emails. I set up a group email and posted after each treatment day. Remember this is about you, dont concern yourself with others who need to be in "constant touch etc" Setting limits. Give yourself time to grieve, it is a loss on so many levels and then move forward. You will have good days and days that are more challenging

    You do not need to protect your family and friends Cancer sucks big time and they all need to figure out this road for themselves. My kids were 12 and 17 and have really followed my lead. I dont dwell, so they dont but it is always in the back of all our minds. It has become a family joke when I play the 'cancer card" to get out of something I dont want to do or they play the "My mom has cancer card" to do the same

    I could go on for days and days - please keep us posted or feel free to PM me It suck, but you will adapt - somedays better than others

    Nel

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    Hello Nel and thank you so much for your post. Somehow hearing from long term survivors is keeping my spirits up; everything I read on the internet makes me feel like the undertaker is parked outside with the motor running. I'm clinging to one thin thread of hope that this is not IBC, but since MD Anderson assigned me to that "team" I have to believe the writing is on the wall. At any rate, it is CANCER and it is in my lymph node, so I've got my ticket to crazy town.

    I dread the whole process but I'm pretty sure everyone who ever faced it felt the same dread. I know it will be unpleasant but I'll show up and get it done. I doubt I'll bother with any wigs; a scarf or baseball cap will work just fine. I'm no longer working so no worries about that.

    My children are all grown and I have finally told them all earlier today that I have cancer. It was rough and emotional but they are very supportive and I'm so happy to have them in my corner.

    I hope others will show up to post their experiences and any tips for me. I can use all the positive energy I can get right now. Thank you again.

  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited January 2021
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    "The undertaker is parked outside with the motor running"! OK, I laughed my socks off at that one.

    When I told people I had breast cancer (and I told A LOT of people, a fairly large circulation newspaper did an ongoing, years-long series of articles about my diagnosis and treatment) I didn't share that it was IBC or what stage it was. It was hard enough without doing all that explaining. Still, people occasionally asked very nosy questions (you must learn to counter, kindly, with "why do you want to know?") and behaved as though I was going to fall over dead in the middle of a conversation.

    I'm a nurse but cancer isn't my specialty. I learned a lot, quickly, and I'm still learning about new treatments and new hope. You will, too.

    The standard procedure for many locally advanced breast cancers, including IBC, is big-gun chemotherapy to beat back the cancer and make it smaller for surgery, followed by mastectomy, then radiation. Some surgeons will give you the option of tissue expanders for reconstruction later. My radiation oncologist asked me to skip the expanders. He wanted to target the radiation to exact measurements and didn't want to calculate in the expanders. My plastic surgeon had already gone over DIEP reconstruction and I knew that was what I wanted after the radiation effects settled down. Be aware that IBC requires intense radiation treatment and there's a high rate of infection if tissue expanders are in place. The radiation leaves the skin thin, friable, and vulnerable. Many times, the expanders must be removed.

    Be thinking about what you want down the road. Do you want a double mastectomy? Do you want reconstruction or is being flat, on one side or both, OK with you? My mom had bilateral mastectomies when she was 70 years-old and went flat. She loved the comfort and ease. She was petite and wore scarves and jackets and looked fabulous. My sister and I both opted for DIEP reconstruction (this is a procedure that uses belly skin and fat, along with their blood supply, to fashion "breasts" that look and feel real). These aren't decisions you must make immediately.

    I had a wig. I wore it for a couple of weeks and ditched it. It was was hot and itchy. I wore cute caps and then went commando. No one batted an eye. Initially I was afraid I'd be "cancer girl" but nope. No stares, no comments, nothing. Someone on Facebook said "you look like a French model." It made my heart sing.

    Make lists and keep a binder. Pathology results, imaging results, chemo sessions, lab work, notes from doctors visits, questions to ask. All this information is very, very valuable to your medical team, and if you bring your binder to each appointment, they won't have to search portals or call other doctors' offices to get it.

    Please feel free to come here and vent, ask questions, whatever you need. We are here for you. SB

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    SBElizabeth--My sense of humor gets me through a lot in life so I have a tendency to be a wise guy. I'm not concerned about handling nosy people or what they think; I can be quite assertive when the situation warrants. :D

    My biggest fear is the cancer treatment and how awful it's going to be. I don't care about being bald or having boobs; I just want to live and I don't want things to hurt. I have already disowned Thelma and Louise since they are trying to kill me (especially Thelma), and if I can get the surgeon to agree they are both outta my life. I will not have reconstruction; just hoping for a nice neat scar.

    I will have plenty of questions for my team on Wednesday, mostly about how treatment might differ for older women (me). I'm basically healthy but I don't know at what age they decide that treatment has to be less aggressive (less effective?)

    I don't know that I need a binder at this point; all my tests, doctors, etc. are at MD Anderson and I don't plan to go anywhere else. Do you think I need copies of stuff that they already have electronically? I am going to start a personal journal of all cancer-related activities so I can remember who said what to whom and when.

    Thanks again for your support and help. It's so great that survivors hang around here to dispense hope to people like myself. It is greatly appreciated.

  • Nel
    Nel Member Posts: 597
    edited January 2021
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    lw422,

    You have referred to your age - how old? All treatment decisions, no matter age, should be made with YOUR input and what is important to YOU! With my initial onc, and oh god how I miss him, I was always considered part of the team Because it was IBC, treatment was aggressive standard of care, but he knew how important quality of life was. Now with stage 4, at age 66, focus is keeping it at bay while maintaining my quality of life

    It is all a balancing act

    I did not keep a binder as I have access to my records through the center I go to. I can pull up anything at any time. Just going thru last week looking for some info, my records from infertility treatment 30 years ago are also there. I received treatment for infertility as part of the same healthcare partnership. So you should be able to pull up anything, not that I wanted to go back 30 years to that crazy making time (LOL)

    Nel

  • minustwo
    minustwo Member Posts: 13,156
    edited January 2021
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    lw - chiming in from Houston. I did not have IBC, but since we're in the same city I decided to weigh in. Trust me - you're at the best place you could possibly be at MDA. Since I only had what my BS called "garden variety cancer", I stayed with Methodist & Baylor. But I asked my surgeon why I shouldn't go to the premier hospital since I lived in Houston. My BS had done a fellowship at MDA, knew lots of people there, and said she would be the first one to refer me over if something weird showed up.

    You can do this. And it really won't be as bad as you imagine. The treatment's not fun, but it is "doable": We're all in your corner.

    Below is a link about Chemo. Even if you only read the header, there are good tips.

    https://community.breastcancer.org/forum/69/topics...

    There's another good link about preparing for surgery if you get to that point. Let us know.


  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited January 2021
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    Cancer treatment is not a picnic. For me, personally, the awful part was the emotional part. Not the pain or nausea or aches or fatigue, none of which were a big deal for me. I was scared and sad. That got better, gradually, as the weeks and months passed by and it looked like I might live through the nightmare. Today I have to look at my signature line to remember my stats. It's behind me.

    So you've decided to go flat--great! Be certain to express this VERY clearly to your surgeon. Sometimes they leave extra skin, "just in case" you change your mind and want reconstruction later. Extra skin means lumps, bumps, craters, wrinkles, mountains and valleys. Creating a smooth, flat chest takes some surgical prowess. My mom liked being flat but it took a couple of surgeries to clean up the dog ears and flappy scar skin for her.

    Keeping my binder gave me a sense of control. Today, with everything on line, it's probably not necessary if you get all your care in the same system. I would probably do the same thing now, though, but that's just me. I really dig organization! Your journal sounds like a great idea too.

    Good question about the "older women." I don't know at what age they back off the aggressive treatments and go for quality of life stuff. I was 56 when I was diagnosed, post-menopause but just barely. Maybe it depends on the individual? SB

  • minustwo
    minustwo Member Posts: 13,156
    edited January 2021
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    I didn't keep a binder but I did keep a steno notebook with me at all times. I have records of every doc visit & every infusion, etc. Now I make an excel sheet with questions before every doc visit. And I have copies of every imaging - both the reports and actual CDs in case I need to share with another doctor later.

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    Nel, I'm almost 70...seems impossible but the years just seemed to roll on by. My older sister is a healthy 80 and I always "assumed" I'd make it as long as she has, so I need to get busy with this cancer thing. I never really felt old until I started seeing cancer treatments focused on 40 year olds and wondered why the heck that is when the risk of BC gets higher with age. I don't have any significant health issues that I'm aware of, except CANCER of course. :D

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    Hello MinusTwo, fellow Houstonian! I'm glad you chimed in and it's nice to meet you (except for the circumstances of our being here of course.) My PCP is a group physician with Houston Methodist and I considered having the screenings there because the facility is much closer to home, but after I thought it over I decided to go with MDA and so far I'm glad I did.

    Thanks for the helpful link and for being in my corner. I need all the support I can get these days. I appreciate your post very much. Keep in touch!!

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    SBElizabeth--yes, I'm planning to go flat. I don't want any more surgeries than I have to have, so no reconstruction for me. I have read a few posts that surgeons don't want to remove a non-cancerous breast for IBC patients and I'm not quite sure why that is. But I know I don't want to be left with one lonely "D" cup that could potentially have a problem later. So I will definitely make it clear to the surgeon what my preference is, and see if he agrees.

    I'm sure I'll carry a notepad with me to visits but as long as all my records, imaging, etc. is on my patient portal that will be good enough. I noticed that MD Anderson has imported my regular health records from Houston Methodist so it appears to all be in one place.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited January 2021
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    The words you need are “aesthetic flat closure”. Just search for it here on BCO.

    Your overall health and life expectancy without cancer, not your age per se, are what matter. They will not hold back because you are almost 70 if you are a suitable candidate and wish to have standard of care IBC treatment with curative intent.

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    Thanks for the info, Shetland Pony.

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    Today I got confirmation that I do indeed have IBC. Since that was my suspicion all along, it wasn't much of a surprise. I will have a PET scan on Friday and a brain MRI on Monday. Should have my chemo port installed within 2 weeks and begin Taxol/AC.

  • Astrid
    Astrid Member Posts: 1,033
    edited January 2021
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    No doubt some IBC people will be along soon LW

    Just keeping you company here for a bit.

    Xx

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    You're a sweetie, Astrid. I'm going to wrap this thread up and move over to IDC since I have that, too. Winking

    One more comment; I did ask my oncologist team if my treatment would be any different because of my age, and got a resounding "NO." Since I have no other comorbidities and am in good health EXCEPT FOR CANCER Devil, I'll get standard care.

  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited January 2021
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    Well, now you have a diagnosis and a plan. Good for you. We're here for you as you launch forth! Please let us know how you're getting along and let us support you throughout your treatment. SB

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    SBElizabeth-- Thank you so much for your support; it is so appreciated. I am in awe of the kindness here.

  • melissadallas
    melissadallas Member Posts: 929
    edited January 2021
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    LW422,

    Expected or not, I’m sorry about your diagnosis, but glad it appears that people here are helping to “steer you along.

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    Thank you, Melissa. I am sorry for every person who ever found themself here, whether in terror of a suspicious symptom or with a dire diagnosis. The help and support found here is incredible and I will always be thankful for it, and to the brave and generous nature of posters on this forum.

  • Ruthieq
    Ruthieq Member Posts: 1
    edited January 2021
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    Hi there, I am a 14 yr survivor of IBC, IDC, & DCIS, ER/PR +, Her2 neg. You are not doomed! I had 7 of 12 positive nodes, so they took them all. It happened in my right breast as well. I noticed that bruised look on my breast too. 2 weeks prior to that, I'd gotten an email from my sister with a video about a girl who had IBC. Being a nurse had I heard of this? Yes I had but as a rare cancer. I knew the symptoms of it and it stayed in my mind until the symptoms showed up on my right breast. A spot near the bruise, grew from finger tip size to finger length over the weekend. My nipple was inverted. It hurt...a lot! It was a kind of ache and burning sensation. When the tests were all done and 2 biopsies were done (because my first surgeon was an idiot) I still didn't have clear margins. Chemo first, then surgery, a bilateral mastectomy, no reconstruction,then radiation. They initially gave me 2 yrs to recurrence if I was lucky, and maybe 4 yrs total. I AM STILL HERE! You can beat this. In several studies at MDA, ER/PR + with Her2 negative is the best type for long term outcomes. Don't despair and keep going. You will be ok! Hugs ps You can pm me as well for any questions etc. There are groups on FB as well as this forum, to help get through this uncertain time. Ruth

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    Ruth--thank you so much for taking the time to post; I can't tell you how much this means to me. How great that you are a 14 year survivor and I hope you have put this behind you forever. I am so grateful for your encouragement and I know others with IBC who might stumble across your post will feel similarly hopeful. I appreciate this so very much.

  • moderators
    moderators Posts: 8,216
    edited January 2021
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    Ruthieq, thank you so much for sharing your story! Your inspiring words are so encouraging.

    The Mods

  • MrsT41
    MrsT41 Member Posts: 2
    edited January 2021
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    Hi, I am 41 years old and not sure what to do. I have been trying to find someone with similar symptoms to my own.

    I regularly check my breasts and I read about a lady with a similar experience, when I got out the shower two weeks ago I have a faint pinker patch of skin approx 2in in diameter and to me looks slightly raised like a hive. I saw a nurse last week and she said it looked a bit dry and sent me on my way. I'm very concerned and it's not 'normal' for me. I had a melanoma in-situ 9 years ago at the back of my neck, so regularly check my skin. Any advice would be appreciated, but because it is more apparent in different light I feel I'm going mad!
    thank you

  • lw422
    lw422 Member Posts: 1,404
    edited January 2021
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    MrsT41--can you see a doctor or gynecologist soon? I also had a faint pink area on my breast that I thought was a bruise, but sadly was actually IBC. Do you have any other symptoms, such as changes to the nipple or itching? I know this is a gut-wrenching time for you, but get it checked as soon as you can for peace of mind. IBC is actually rare and chances are that you will be fine. My best wishes to you

  • MrsT41
    MrsT41 Member Posts: 2
    edited January 2021
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    thank you for your response LW422.

    I shall ring in the morning, I just feel my concerns were dismissed too readily. It’s the left breast and it aches a little but I have no other symptoms. Did you?

    X