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Not Where I Wanted To Be, But Here I Am

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  • Astrid
    Astrid Member Posts: 1,033
    edited January 2021
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    Hi MrsT41,

    As LW writes, Do see your doctor as soon as possible. No point in waiting and worrying. Ask for a referral to a specialist.

    Astrid.

  • lw422
    lw422 Member Posts: 1,411
    edited January 2021
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    MrsT--don't let them "dismiss" you! You need to have that checked if only for your peace of mind. I wish I had some magic words to help rid you of anxiety; I know how scared you must be.

    At first I had no other symptom, but after about 2 weeks my nipple on that side got VERY sensitive. I couldn't stand for anything to touch it and even had to wear a bra to bed so that my nightgown didn't rub against it. I stared in the mirror comparing my breasts at least 10 times a day, trying to see any difference. When I went in to see my doctor, she said the breast was slightly swollen but I just thought that one had always been slightly larger.

    The main thing for you to know is that EVERYONE has different symptoms. Some have a single symptom and some have them all. Just get in quickly and get it checked. My thoughts are with you so please let us know what you find out.

  • minustwo
    minustwo Member Posts: 13,198
    edited January 2021
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    MrsT - you should probably post in "not diagnosed but worried".

    That said, if the patch was on your thigh or your stomach, you would not think breast cancer. Since it's a skin issue, I'd suggest an appointment with your dermatologist. That's much more likely than IBC. Hopefully since you had melanoma skin cancer in the past, you see your derm doc regularly.

    That and STAY OFF google. That is really not reliable & can cause major panic.

  • Austriangirl
    Austriangirl Member Posts: 1
    edited January 2021
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    Hi there, sorry to hear about your world being turned upside down. You are not alone.

    I am just a month ahead of you. Was diagnosed at MDAnderson in Phoenix at the beginning of Nov, after a 2 month delay with local Gyn and antibiotics - common misdiagnosis.

    Hang in there. First things first, you got the right diagnosis and MDA will come up with the most appropriate treatment plan, so in one way you can relax a little bit. 

    You asked what to expect, in terms of treatment I can only share the protocol they use with me:

    My treatment protocol for IBS so far is 4 cycles (every other week) of AC chemo followed by Taxol for 12 cycles (weekly). Radical modified mastectomy of affected breast comes next, followed by radiation. 

    I have found myself often overwhelmed by all the information and the speed of action by the MDs.

    Slowly trying to figure things out for myself. My advise - Give yourself time to adjust. 

    I often do not recognize this body who now has to deal with so many things formerly unknown- like chemo brain, treatment is rough and side effects are strong. At least for me. Ended up in emergency room twice with neutropenic fever and sepsis, was in hospital for 5 days just a week ago. I wish doctors would educate patients more about the harsh reality of chemo. I feel they understate the side effects and patients find out the hard way.

    I do not want to scare you but maybe it helps you to be prepared by hearing what happened in my case.

    Be well.



  • lw422
    lw422 Member Posts: 1,411
    edited January 2021
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    Hello AustrianGirl and thank you for posting. I'm so sorry for your diagnosis and I hope your treatment is successful. I appreciate you sharing your experience thus far. I'm dreading the treatment but unfortunately my life is suddenly not my own and all this is beyond my control. I know you have felt all the feelings I have, and it's a terrible ordeal but hopefully we will both come out of it and get back to our "new normal".

    My MO stated that I would be having Taxol and AC, but I thought I understood that I will start with 12 weeks of Taxol (once a week), then 12 weeks of AC (once every 3 weeks). I suppose many factors go into the plan of treatment. Thanks again for sharing, and my very best wishes to you during this terrible time. Keep in touch, I want to know how things progress for you.

  • lw422
    lw422 Member Posts: 1,411
    edited January 2021
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    I received the pathology report for my 2 skin punch biopsies this evening, and much to my surprise, there is "no evidence of carcinoma" in my skin on the cancerous breast. Is it possible to still have a clinical diagnosis of IBC without supporting pathology? I will be very interested in my MO's comments about this on Tuesday. Here's the info from My Chart...

    DiagnosisA: Breast, right upper outer, skin punch:

    Mild superficial perivascular lymphocytic infiltrate

    See comment.

    B: Breast, right upper inner, skin punch:

    Mild superficial perivascular lymphocytic infiltrate

    See comment.


    CommentA, B: Immunohistochemical studies for pancytokeratin performed on both specimens fail to reveal carcinoma. PAS special stains are negative for fungal organisms. Multiple deeper sections were examined. Clinical-pathologic correlation is necessary.
  • Astrid
    Astrid Member Posts: 1,033
    edited January 2021
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    whoah! That is an interesting development LW. I hope someone knowledgable can weigh in here. Is it all possible they were too quick to jump to IBC conclusion, or is it often the case that it may not show up on skin punch biopsy.

    I wonder what other key indicators they used. Maybe the swelling and pink bruise or how the lumps looked.

  • lw422
    lw422 Member Posts: 1,411
    edited January 2021
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    Beats me, Astrid. I know that IBC is a clinical diagnosis, so I suppose it's based on the oncologists' observation of symptoms. I don't know why I had the idea that the skin punch biopsy was "the" official determination but apparently I'm mistaken. I suppose I should be happy that they found no carcinoma in the skin of my breast, but in the grand scheme of things I still have cancer.

  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited January 2021
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    LW422, they found no carcinoma in the small biopsy specimen of the skin of your breast. It could be that the biopsy site just wasn't the correct spot to find it. This happens occasionally.

    Still, I would ask my oncologist or surgeon to explain it. Are they basing the diagnosis of IBC on clinical manifestations?

    The treatment protocols for IBC and locally advanced invasive ductal carcinoma are very similar--chemo, followed by mastectomy, followed by radiation. Your team probably wouldn't alter your treatment based on a negative skin punch biopsy anyway. But I would want to know what they had to say about it.

  • lw422
    lw422 Member Posts: 1,411
    edited January 2021
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    SBElizabeth--I am quite curious about what the oncologist will say about the punch biopsies. They took 2 specimens of fairly good size... at least as wide as a BB and about as deep. Both specimens were from the red and "thickened" areas of skin so logically if there is cancer in the skin, that's where it would be. I'm sure it won't change my diagnosis or treatment, but it is curious.

  • deniseml
    deniseml Member Posts: 68
    edited February 2021
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    LW422: Your post is hitting home ! Do I ever know how you feel. Diagnosed in 8/2020 with IDC, IBC stage IIIC. I am half way through treatment ! Keep Heart ! NO cancer found in nodes or breast tissue removed during Surgery 6 weeks ago! YES, I am getting triple- modal treatment . Throwing the big guns at it! 30 Radiation treatments now along with immunotherapy ( 12 more treatments) to complete a year of therapy. HER2+ / ER & PR negative though. The goal is CURE!

    The worst part for me was knowing I probably have inflammatory BC even before biopsy, having gone through training as RN many years ago. The delays I encountered sent me to the panic stage quickly. Once treatment started I could take a deep breath and focus on beating this. No, its not easy, but, it is doable! I am keeping you in my prayers!

  • lw422
    lw422 Member Posts: 1,411
    edited February 2021
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    Hello Denise; it's nice to meet you but not under these circumstances! I'm glad to hear you are doing well with treatment; I'm barely started with Taxol chemo and already have a week's delay due to the Houston weather. I've had one chemo and it wasn't horrible, thankfully. Not sure how skipping a week might affect the treatment but it can't be helped.

    My MO hasn't mentioned immunotherapy as part of my treatment; not sure how that is determined.

    What part of GA are you from? I'm originally from south GA, near Valdosta. I wish you continued success in treatment; keep in touch and let me know how it's going.

  • lw422
    lw422 Member Posts: 1,411
    edited February 2021
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    Updating my progress to say that my MO called a couple of days ago and reassured me that any effect of missing a week's chemo would be "negligible." Missing a week was mixed emotions; wanting to get on with knocking back the cancer while enjoying a week off!

    I'm having Taxol #2 tomorrow and noticed a lot of hair shedding in the shower tonight. I haven't noticed much change in my IBC breast. It looks a bit beat up from all the scans, biopsies, etc. and still slightly swollen, but I don't see any progression of the pink area or thickened skin.

  • blue22
    blue22 Member Posts: 172
    edited February 2021
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    Hi LW,

    Good luck tomorrow. I let my hair fall out initially too, but at some point it got pretty messy and I cut it to a bob, and then completely off. Next time I am going to have fun with it before it falls out.

    Take Care,

    Blue

  • lw422
    lw422 Member Posts: 1,411
    edited February 2021
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    Hi there, Blue. So nice to "see" you. I'm so torn on the hair; for some reason I just can't stand the idea of baldness and looking like cancer person.

    Hope you're doing well. I need to get to bed so I can rest up for the exciting day tomorrow! Thanks for the good wishes.

  • Astrid
    Astrid Member Posts: 1,033
    edited February 2021
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    sending all good wishes for treatment 2 LW.

    Thanks for keeping us in the loop.

    re the hair, never easy but it gets easier to deal with it. You'll know when to get it shaved. Have you got a wig ready? Or are you a scarf or even fancy turban kind of gal? I have large ears so only went bald at home...lest I get arrested and experimented on as an E.T.

    😁👽😻

    Hug


  • lw422
    lw422 Member Posts: 1,411
    edited February 2021
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    Hi Astrid. Thanks for the good wishes. How are you doing these days?

    Yes, I bought a wig but I probably won't wear it much. Around the house I'll rely on scarves or a baseball cap. I don't believe I'll ever be comfortable just being bald, but we'll see how it goes.

  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited February 2021
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    My brother and me. A friend said, "you look like a French model." It made my heart sing.

    I bought a wig and wore it two weeks. It was hot and itchy. Once I determined to go commando, I was comfortable in my skin--literally--and no one gave it a second glance. I learned how to put on eyeliner, for the first time in my life.

    No photo description available.

  • lw422
    lw422 Member Posts: 1,411
    edited February 2021
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    Gorgeous, SBE! I'm not that brave, tho.

  • blue22
    blue22 Member Posts: 172
    edited February 2021
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    Hi LW,

    During treatment I wore all sorts of caps. It is often chilly where I live, so it got to the point I often felt I needed them for warmth. When I was done with surgery and yet still just fuzzy on top I had my sister do a good clean up of the fuzz and I went without anything for the most part except when I slept or was cold. I had many compliments on my hair, often from people who didn't realize why I had none. I now have a very curly mess that I don't really care for but I don't feel like stressing over it either.

    I think the hair choice is very personal.

    Good luck tomorrow!

  • lw422
    lw422 Member Posts: 1,411
    edited February 2021
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    Hey Blue. I know you're right... it's a very personal thing. I should be more worried about my chances of surviving cancer instead of being bald. I'm getting a pixie cut this weekend and it appears that most of my arm hair is gone.

    I had treatment #2 today; just 10 more Taxol to go! (Trying not to think about the AC to follow.)