Apparently I Am "Just Diagnosed." :(
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LW - fantastic news. And Astrid is correct - this is your new job - for a while. And hey girl - pass on the chemo threads until you meet your MO and find out what they are recommending. Just take some time off!!!
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yeah, time off...time out!
Excellent idea.💗
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Hey -2! You're up kinda late! I need to go to bed because I have a dental checkup tomorrow. I could seriously use a day off from some kind of "appointment." Thanks for your words of encouragement; they mean a lot.
My MO told me last week that my IBC treatment will be Taxol/AC chemo, surgery, then radiation. I assume that will be the plan since it is fairly standard for IBC I believe.
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Hey Astrid. I was just about to go to bed; it's been a long day. I was trying on "cancer hats" earlier with my hair all hidden and it made me cry in the bathtub for about 20 minutes. Another mini-drama. Cancer sucks in case anyone was wondering.
See y'all tomorrow. (Or I suppose that would be later today.)
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awww honey!!
Losing our hair is hard! But wigs and hats and scarves and just bald around the house..or out..if it suits you! Whatever you feel like. Crying is also good. 'Endolphins' as we used to call them 'cos they help you feel better.
Hope you sleep well
🌺🌸🌺
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Yay! I'm so glad you're finally starting to get back some results where the worst that could have been is NOT!! I hope they just keep flowing!
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I'm so happy for you! The fear is very real and I just went through the wait for staging tests myself. It's so easy to think the worst when everything has been bad news. Treatment has been a breeze to me compared to the mental battle in the beginning.
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Hiya, Salamandra! Thanks for the good wishes; it's nice to finally get a bit of positive news in the midst of all the horror. I wish none of us ever had to be here, but I'm so glad to have supportive people who understand what I'm living right now.
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Hi RedCanoe--bless you, I see that your diagnosis is new, too. Yes, the initial whirlwind of never-ending tests, waiting, and bad news is so devastating. I'm glad that your treatment is going well. Let me know how things progress for you. Thanks for your kindness.
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Hi LW,
Did you never ever have that deep down desire to see what you looked like bald?
I did! The hair loss is really not that bad. Before chemo, I had long hair well past my shoulders. I had had fun with my hair prior to chemo, dying it purple, and then blue etc. When I lost my hair, I thought for sure people would stare, and that never happened. I occasionally had some odd comments, but I looked at the funny side of them and still laugh at some of them. Another silver lining - come Halloween you can have fun with your costume, that is what I did.You can always wear wigs and have fun with those too!
Regarding your question on the IBC forum about pathology, the best explanation I can think of is that when you consider how a biopsy is done, it is only a small sample of your skin that they take, and of that they then likely embed in in paraffin, then take a very very thin slice and look at it under a microscope. In the end it is a very very very small bit of your breast they are looking at, even if they look at multiple sections. There is always a risk that you still have cancer in the dermal lymphatics, but it was not caught in the small biopsy they took. The safest course is to still treat you based upon the clinical presentation.
Take Care,
Blue
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ha! Wrenn!
Mine came back blonde and curly like a sheep. I loathed it!
These days it is whitish grey with a lovely soft wave.
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Great news...hope you got out and took a deep breath in the air and looked up at the sky. You got this!
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Blue--haha, I have to say, I have never had any interest in seeing myself bald. But whether I want to or not, that thrill is coming soon to a bathroom mirror near me.
The skin punch biopsies were taken in the red, thickened skin on my breast, so I assume that if the skin has carcinoma that would be the spot to biopsy. (They took more than one specimen spaced apart.) Anyway, that is something I want to talk to the MO about next week, mostly for curiosities sake. I'm certain my diagnosis won't change.
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Wrenn--I just want it to come back.
And it's not even gone yet. 0 -
Thanks, Beach2Beach. Yes, I'm appreciative of any "good" news these days!
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I catch your thread every so often but hadn't posted. I thought I would to send some positive vibes. Six appts, yikes. I had to have two MRI's a week and a half apart and am certain I looked like I was dragging into the second one. They commented on how some physicians get over zealous and will schedule three right after another. A week later a third was ordered and I sat there imagining myself having a child like meltdown on the floor, tantrum and all. It was a nice mental fantasy.
Wishing you some more silver linings
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Hi Lille and thanks; I'm glad you decided to post. My appointment lineup for tomorrow was reduced to 5; the vaginal ultrasound got bumped to Friday. Most of the appointments tomorrow are piddly... blood work, Covid test, meeting for port placement info, EKG and echo-cardiogram. Nothing too scary, thank goodness.
I hope your treatment and recovery are going well.
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Hello everyone. I'm still hangin' in there but my anxiety is still off the charts. I'm scheduled for the port placement on Monday and hoping that will go smoothly. Meet with MO on Tuesday and I suppose the chemo schedule will be revealed. Hope everyone is doing well.
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Hi there L-Dub. You are in my prayers and keeping you close in spirit. 🌸
So much for you to go through. Good bad and ugly. One day at a time.
There will be joy and laughter even amidst the great unknown before you.
There really will. I can promise you that.
And you will get through it.
Appt by appt. Treatment by treatment.
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Hey Astrid. Hope things are going well for you. I appreciate your words of encouragement.
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Hey Jana. I'm meeting the famous Ervin Brown, MD on Monday.
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Yep, the real fun is about to begin. I've been mourning my hair for the past week and it's not even gone yet.
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I found that anticipating being bald was a whole lot worse than actually being bald. Of course, the last time I had shoulder-length, abundant hair was in high school, and as an adult I've always found fussing a lot with my hair was time-consuming. I spend a lot of time wearing helmets for one reason or another and I like short-ish, messy 'do's.
Being bald was an amazing experience. Showering was a breeze, although I still used my shampoo because I like the smell. I learned how to skillfully apply eye makeup, including--especially--eyeliner so that no one could really tell I had no eyelashes. When I ditched the hot, itchy wig and went to caps and scarves, it was a great step. Then, when I finally determined to go commando, I was amazed at what little attention it attracted in public.
I might have felt different if I worked in a job that interfaced with the public a lot, like teaching or retail. I worked in a big office with lots of people, but everyone knew me and no one gasped when they first caught sight of my hairless head.
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Ervin Brown is definitely famous (in his own mind, according to my surgeon who's been at MD Anderson forever)--but he's good. You're in good hands.
I kept telling my MO that I wanted to start chemo "yesterday." We knew my tumor was growing quickly and it just seemed like getting the "show on the road" was the only answer. You'll feel like you're finally moving the right direction once chemo starts. 😊
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SBElizabeth--the hair thing is what it is, but it makes me sad nonetheless. Being of a "certain age," my hair is one of the few pretty things I have left; it's shoulder length and silky. I may as well stop obsessing about it; it's not like I have a choice in the matter!!
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Hey Beesy. I'm only interested in Dr. Brown's abilities, and it seems that he has installed over 14,000 ports so at least he's got some experience!! Hopefully I'll only have to meet him once and be on my way. And I agree... let's get going with this thing.
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LW - ability is critical - and that's probably all that counts for a doc you meet once. But you need to be able to have a 'meeting of the minds' with your BS, PS and particularly your MO. Sometimes you get someone who is absolutely arrogant. You will be with them for the long haul so you need to consider their manner too and how they share information and advice.
Good luck tomorrow.
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Hey -2. Yes, I know that some doctors have massive egos and no bedside manner. I am looking forward to my meeting with my MO tomorrow so hopefully I can get a feel for how humane he is, or whether he is looking for more scientific accolades as he has many published papers. Unfortunately there is a "team" of IBC treatment doctors in place at MDA; not sure what I would have to do if one of them rubs me the wrong way.
I had the port placement surgery today and so far, so good. I have a bandage over the port site under my collarbone, and a bandage on my jugular vein in my neck. It wasn't painful at first but it has been several hours and it's getting sore; kind of hurts to turn my head and I have a headache. I'm going to take a Tramadol and go to bed early. Not sure if I should sleep in my bed or in a recliner tonight... I have a tendency to "toss and turn" and don't want to mess up the port.
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My meeting with my MO went very well today. I'm happy that he is a good listener and takes time to "hear" me. My chemo is scheduled to begin next Tuesday with Taxol (12 weeks). I was asked if I'd like to sign up to be part of a clinical trial for IBC and I am trying to decide about that. It will require additional biopsies and of course, trial drugs that may or may not add side effects to my treatment.
I'm going to read the Clinical Trials thread and see what the general consensus is. I need to give MDA my decision ASAP since they'd have to adjust my chemo for next week. Has anyone here participated in a clinical trial?
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Hi LW
I'm glad your meeting went well and tou felt heard by MO. Very important.
Hopefully some good advice re trial comes your way. A lot to think about and so much all at once but you are doing great. How does your port feel today?
Did you sleep ok?
Astrid.
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