TNBC metastasized to skin
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Buttonsmachine, I likely will get a second opinion. Thanks so much for sharing. I can only imagine how you felt after seeing those dang lessions so soon after surgery. I'm angry on your behalf at your recent diagnosis. I'm all about giving virtual hugs, so they're heading to you.
Again, thank you all for showing up on this thread. I need to hear it all - the good, the bad and the ugly. I'm currently in the ugly phase myself. (Ugly boob, fighting an ugly attitude.)
My girls are home for fall break. I'm going to be busy with them. Also have two doctors appointments and two scans scheduled this week. I will check in.
Going to clean my kitchen now. Seems to be a productive way to burn off my nervous energy.
Make the best of today, sweet ladies.
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Thank you for your kind words, helenlouise! I had my most recent recurrence while on Zoladex and Faslodex, so now we have added Ibrance in hopes of that working better. I am fortunate to get regular imaging so that helps me to be reassured that we are keeping good track of things.
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HappyAnyway, thank you for the virtual hugs, right back at you! You are in the thick of things right now, but it does get easier as you get a plan and adjust to the new circumstances. I hope you can relax and enjoy time with your family this weekend!
I think that for those of us who had skin metastasis, it helps to get screened for distant metastasis on a somewhat regular basis, at least for a while. Although there is some debate about this in the medical community, I do think it is helpful from a quality of life perspective when metastatic recurrence is "caught early."
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Sending you some support and love. xxxooo
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Alright everyone, I saw my BS today. He is definitely going to remove my nipple, skin and TE. Totally sucks, but I'll deal. The soonest that the receptionist at the BS office could get me in to the PS (consult in case skin grafting is needed) was 2 weeks. I called my PS staff and explained my situation and was worked in today. I say it often, but it's important to advocate for yourself. Would two weeks really matter? Maybe, maybe not. Glad I didn't have to wait.
My PS said there should be enough skin to close up the wound. If not, he'll use skin from my back. He asked if the cancer is inflammatory. Two other surgeons nor my MO suggested that. My MO requested more tests to be run on my biopsy from my dermatologist's office.
I have a chest CT followed by a bone scan tomorrow. I see my MO NP on Thursday to go over the results. My MO is on vacation this week.
Hopefully my team will put a plan in place next week. Buttonsmachine, if surgery is recommended first, I will definitely seek a second opinion. In the meantime, I'm researching.
I'll update on Thursday.
Thank you all. Be well.
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Good luck, HappyAnyway. I hope everything works out for you in the best possible way.
Trish
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Thanks for the full update, Happy. You're right, it sucks, and you'll deal. I wish like hell you didn't have to.
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HappyAnyway, it's really hard to know whether to do surgery first, or chemo first, because there are so many individual factors - it depends on how large the area with cancer is, and how much extra tissue you have to close the wound, and how well your doctors expect you to respond to chemo, among many other considerations I'm sure. That is why it's crucial that you trust your team to weigh those nuances.
It's good you are getting imaging before proceeding. Not only to rule out distant recurrence, but also to help give as much guidance to the surgeons as possible. One problem with skin metastasis is that the cancer cells can "leap frog" out across the skin, and so they often have to take bigger margins than they would under normal circumstances. I am hoping the best for you. Hang in there and please keep us posted when you can.
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On my way to the hospital. Rocking out to some music. I'm not too nervous about the scans. Not sure how I'll feel on the way to my appointment tomorrow.
Thanks to each of you.
ETA: I'm the passenger, not typing and driving. ; )
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Good luck happy
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Well, I should be leaving for my appointment now, but I'm not...
Received a call from my nurse navigator this morning and both my chest CT and bone scan are clear!!!
Will follow up with my MO next week.
What a relief.
Thanks to each and every one of you!
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Best news of the week!!
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WHHOOOOOOO! So glad to read this news!!
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Congratulations! Time for some celebrations!!
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That's such fantastic news! Yay!!!
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Brilliant news time to celebrate 😊😊😊🙏🏻 So happy for you 😊💕
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😁
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Hello everyone. Thanks for the positive feedback.
Just left my MO. He's sticking with local recurrence. It's still TNBC. He's discussed my situation with my BS and RO. They've decided surgery first. The cancer cells have already been exposed to AC, Taxol, Carboplatin, Xeloda and Keytruda. He doesn't want to risk chemo first in case it continues to spread. Halaven and rads will be next, not sure what order.
I called my BS surgery scheduler. She needs to coordinate with my PS and, of course, obtain precertification. Should have surgery within the next two weeks.
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HappyAnyway,
I’m glad to hear that the doctors are moving quickly in response to the skin lesion. Fingers crossed for you and good luck
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HappyAnyway, thanks for keeping us posted. I don't want to overwhelm you further, but you might ask your surgeon if it would help to do a breast MRI before surgery. In my situation the breast MRI provided key information that we would not have known otherwise. Do you have tissue expanders or implants right now? Either way, I'm glad you have a plan in place, and I hope everything goes smoothly for you.
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Thank you, NorCalS.
Buttonsmachine, you aren't overwhelming me. Just the opposite, actually. You and all of the people that post help to keep me grounded.
I do have TE, so no MRI. My bone and CT scans are all clear, so my insurance company won't approve a PET scan.
I'm as prepared as possible. Still scared. The nasty cancer is like a freaking cockroach. Yuck. It's survived everything that's been thrown at it. That's quite a lot.
In the meantime, my 9yo dd fish (that she named after herself) died. We had a funeral for it this week. Poor kid.
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Lulabelle2020, my 9yo dd is dressed as Hermione and my 17yo dd is Draco. Anyone a fan of Beetlejuice? My 20yo dd is Lydia. We're all in for the night. Thank you covid, once again. Making the best of it. We're making all sorts of creepy food.
Speaking of covid, I had my pre-op covid test today. My surgery is scheduled for Wednesday first thing in the morning. Only one person can accompany me. Of course I gave my husband first dibs. He wants to be there. My sister is more savy when it comes to medical issues. She's my backup.
My surgery last year was on 10/30. This year it's 11/4. Little bit turns 10 on 11/2. Two years in a row now. Hopefully next year will be better for her.
Anyone have any good news? I hope you are all well as can be.
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HappyAnyway, I hope you have a nice weekend, and I hope everything goes well for your surgery and recovery.
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Hey, Happy. I am excited for you to have your surgery next week, and so glad M will be there with you. Sorry for all your girls to be going through this with you, especially the little one.
Good news: there is more good than bad. Right now I'm listening to Garth and Trisha on teevee. Saw my 1.5 year old grandson this morning, on video chat. He was wearing his lion costume with pretty good patience for a while, but then pushed it off. My daughter is slowly recovering from covid, more tired now than anything else, so we hope she doesn't relapse. The 9-yr-old is doing well now, and the 16-yr-old seems to have dodged that bullet. It's windy as heck out, but hey, no trees should fall here with this one! And Jim has a lot of the debris burned now. Soon the neighbor kid will come and haul the logs away for firewood. Jim and I have voted already. He's ready to be a poll watcher on Tuesday. I'll get errands done Monday and then go pick up my sewing machine on Tuesday. Supposedly it is fixed already. !!! Today I've been doing some practice quilting. Usually I'm deep in projects so don't spend the time to practice on new things.
The moon is as full as ever tonight, perfect for a harvest moon. Reminds me of this beautiful song, I "discovered" last year. It's sort of perfect for 2 people who love each other and have loved each other for a long time, have gone through a lot. She has gone through a lot and he wants to see her dance again.
Love you, M. I want to see you dance again.
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Thanks so much, buttonsmachine.
MountainMia, that song is beautiful! Thank you for posting it. I imagine your grandson is quite a cutie, especially in his costume. I hope your daughter and little granddaughter are on the mend and have a complete recovery soon. Happy for the 16yo! I like the positive spin on the tree situation. I fully intended on voting early, but was/am distracted. I'm going on Tuesday. Our city had an amazing amount of early voters. Hopefully I'll get in and out in no time. Yay for your sewing machine! You are a talented quilter. I enjoy hearing positive news. Thanks for sharing. Love you, too.
The closer to surgery I am, the better I feel. I'm prepared to be flat (I think). My PS is using my latissimus flap to close the wound. No TE this time. Still planning on bilateral DIEP down the road. My right side looks amazing. For those who are contemplating nipple sparing mastectomy, I'm glad I did it. Some people have no response from their nipples afterwards, but some do. I am the latter. No feeling, but response none the less. Leftie has to go. Instead of a nipple tattoo, I'm planning on a decorative tattoo. That gives me something to look forward to.
Back to going flat. I will ask for a prosthesis, but don't think I'll use it much. I know there's much debate over pinktober, understandably so. I figure the best way for me to advocate is to just be flat out in public. Maybe that will get people thinking. IDK.
On transformation (and possibly making a hypocrite of myself and my previous paragraph) I had my eyebrows microbladed. I immensely disliked having to draw mine on last time. My magnetic lashes are arriving today. Didn't know they existed last year.
As for my hair, I'm going full on mohawk before I shave it this time. Not sure how long I'll keep it, but why not try it? May as well have a little fun. I may color it, but like my natural color. The top is grey, the back is dark brown.
I haven't said this in a while, but if anyone is on the forum but too timid to post, I highly encourage you to join in. I'm a private person and not a fan of social media. This is the first forum that I've participated in. What you have to say may very well help someone else, or maybe open their mind. Not to mention the wonderful people that will help you along your way.
Love to all.
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Happyanyway - can you please post or repost ( I cannot seem to find it) what where your symptoms initially before being diagnosed with skin Mets. Did you have a rash all over your body? Or only on breast? Let me know. Thanks
I’m dealing with a rash since Saturday and just wondering if it’s skin Mets.
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Eigna, I don't mean to speak for HappyAnyway, but in case she doesn't get back in here for a few days (tomorrow is her surgery,) thought I would take a stab at this. In my understanding (again, could be wrong!) it presented first looking like a pimple or 2 on her healthy breast. It was not rash all over, I don't think, or even broad-spread rash on her chest.
As to your rash, I'd offer the advice I've seen elsewhere from wise members: wait at least 2 weeks from when it started. If it persists or gets worse, get in to see the doctor.
Edited to add: this is from one of her comments on the first page: "The first spot that came up looked liked cystic acne, so I treated it as such. It didn't resolve, so I had a MO NP look at it. She prescribed an antibiotic ointment. That didn't work. Finally my PS told me to have it biopsied."
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Thanks Mountainmia for your reply. Right now any comfort I can get it would help. I’m feeling down because I have to wait and see if this is simply a rash or something farworse. The waiting is killing me but I know I have no choice but to wait like I did last year. I just don’t know how much I can take of this. I thought I would have some more time in remission than just a few months. Why do we have to go through all of this? I’m sorry but right now I’m venting I just want to enjoy life without worrying all the time. 😢😢
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Almost for sure, you DO have more time in remission than just a few months. Look, I know exactly what you're talking about, because my brain does the same thing. It's like I'm preparing ALL THE TIME for the bad news. But I have to keep reminding myself that the bad news will MOST LIKELY never come. Each time something weird happens in my body, I have to remind myself of the 2-weeks rule. I basically make a note of the "symptom" and when I noticed it, and figure if it's still there in a few days, I'll worry about it then. But so far it hasn't been.
I saw your post of a new thread and Beesie's response to it. She's right, and I know you know it. Think of all the reasons you might have a rash. Something you ate? A dermatitis from a lotion? Dry skin? Dirty bra (no offense!!)? Stress in your life? Even shingles? There's no reason it has to be mets. Almost for sure, it's not. You said it seemed less irritated after taking antihistimine. That's a really good sign.
Can you make a plan for TODAY to distract yourself from it? What do you need to get done TODAY? What positive things can you do TODAY? Make a plan. Write it down. Then pay attention to the plan and do the plan, instead of worrying about something that mostly likely is just a rash. Good luck.
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Thank you Mountainmia for the pep talk! I really need to be reassured many times especially now with the rash. Claritin seems to be working: rash around my neck is less evident , less red and it doesn’t itch. Now if only the rash around my breast and my body can go away,it could be great. I’ve noted the day :last Saturday. Let’s see if this rash will go away ... plan ? I have a plan: I’m at work so I will distract myself with work!
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