TNBC metastasized to skin
Hey. I went to the dermatologist this week and had a lesion on my left breast biopsied.I just got the call that it looks as though my cancer has metastasized to my skin. My daughters were with me and heard everything.My 9yo dd and 17yo dd busted out in tears. My 20yo dd, husband and I are calm.
I left a message for the MO on call. Not sure why. There's really nothing that can be done on a late Friday afternoon.
Guess I'm looking to see if anyone else has been through this, triple negative or otherwise.
Thanks everyone.
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Hi, sorry that you received this news. Maybe if you get through to the MO you can book an appointment for early next week to get the ball rolling. They'll probably want scans and bloodwork before trying to figure out your next treatment steps.
I think lulabelle2020 and helenlouise both are mtnbc w skin mets. Lulabelle just posted on the stage IV tnbc thread this morning. helenlouise is active on the tn in the uk thread...hugs
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Thank you, moth.
I'm a little floored at the moment. Damnit, my hair just grew back out! I saw my PS a few weeks ago and was looking forward to reconstruction in March. Ugh.
Time to reframe my thoughts.
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Happy Anyway,
I am so sorry to read this. A shock to handle... so I am glad you feel calm. No fun to see your kids scared though. Your family is very close and it is beautiful, too, that your kids can have genuine (upset) reactions and know that's ok with their Mom! They sound like such good kids when you write about them I want to send them love too.
I hope you get a plan up soon.
Meanwhile, do not forget the complimentary therapies out there, like heat. Aka Hyperthermia, which can be googled if you are interested. Heat is not risky when applied externally, other than risk of light burn which will heal. But it can be very effective to weaken cancer & enhance chemo/ immune responses.
I would imagine skin mets would be pretty easy to heat up so thats why I mention it. Simple very hot water bottle would be easy application method.
lots of love, SB.
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Love you, too, Santabarbarian.
My kids are amazing, even if I do say so myself.; ) At least I didn't have to break the news to them. Of course I would have. I'm very open with my girls. My 9yo says it's unfair to be so little and have a Mama with cancer. I explained that life isn't fair. We're happy for each day to have one another. I tell them that I'm not afraid, I just don't want to leave them yet. Death is a natural part of life. Logically, we all understand. It's our emotions...
Heat is something I can do! Also looking at vitamin C infusions.
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Vitamin C could be great too. Yes, the stuff that has low/zero risk and strong potential benefit. The Teaching hospitals with hyperthermia departments are Cleveland clinic, UMD and Wash U St Louis.
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Hi,
yup mine is skin mets what I will say is wait for diagnosis before worrying mine is distant due to a left lymph node right breast and skin involvement.IF it is a local skin on same side as breast involvement or a stand-alone skin met it could be local which is better in terms of advanced as from my knowledge which is limited it can be treated although it’s the same treatment it might not be in your bloodstream as it is with distant lymph nodes do might not be in your body.
I used heat and freaked out as my mets looked worse my onc said that what I saw wasn’t my skin mets I created a flare up of eczema from all the heat and essential oils I used. I still do have hot showers but now don’t put them directly on my skin.My professor have given me the go ahead on mistletoe therapy (high vit c) i will arrange it and pay privately for it in Scotland. I would run it by your onc as depending on treatment vit c can counteract certain chemos as can antioxidants but again only certain treatments can be compromised I’m not sure which but I do have an agreement with my professor that I will run by any diet, supliments or alternative treatments if she keeps an open mind. She did say not to add too much as you can counteract treatment so just to add one at a time see how it works take it away if it doesn’t then try something else. She knows I’m taking turmeric to amp up my Abraxane and wheatgrass, mushroom complex to boot my Tecentriq in terms of my immune system which has worked for me at my three month scan but I’m aware results vary person to person my bloods and functions are good so far although my thyroid has gone borderline hypo which shows the immuno is working.
Hoping you have a local flare up but either way people are great on here and if you do need support on stage 4 as moth said their is a TNBC IV thread as we are a bit of a unique bunch in the mets and cancerland whoever we are getting a lot more targeted options than the zero we had before so keeping the faith is important 😊🙏🏻
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Oh Lulabelle2020, you have no idea how glad I am that you responded!
The dermatologist NP said it is bc mets. She referred all of my questions to my MO.
Unfortunately, my original cancer was on my right side, this is on my left. I'm trying to distract myself until I know more.
Although I know not to, I googled skin mets. Never again.
I saw my PS in September. He ordered a CT scan of my abdomen and pelvis to get a look at my vessels. I was going to have DIEP reconstruction in March 2021. Here's an excerpt from the report:
ABDOMEN AND PELVIS:
-Liver: No abnormalities identified.
-Biliary Tract/GB: Gallbladder is surgically absent.
-Spleen: Normal appearance.
-Pancreas: No abnormalities identified.
-Adrenals: Within normal limits.
-Kidneys: Within normal limits.
-GI: No evidence of obstruction or acute inflammatory process.
-Pelvic organs: Uterus and ovaries are unremarkable.
-Abdominal/Pelvic Wall: Within normal limits.
-Lymphatics: No enlarged lymph nodes by CT size criteria.
-There is no free fluid or free air in the abdomen or pelvis.
I was excited to see all is well. Then I got the biopsy results of what I thought was a simple skin irritation.
I should receive a call tomorrow to schedule my appointment for Tuesday. I'll keep you posted.
Thanks so much for reaching out and sharing. I'm taking notes.
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We're here for you.
Much love,
Mia
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Thank you, MountainMia. Love you.
Been keeping busy with my family. Binge watched Halloween movies. The Nightmare Before Christmas and Hocus Pocus to name a couple. Played Star Wars monopoly. We have a few Star Wars nerds in our family.
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Happyanyway no problem at all,
warning I talk a lot and my posts in different bits have similar information so only take in the bits you want to, I try to add the things I wanted to hear or find out about pre and prior diagnosis.
I’ve been where you are and TNBC mets to skin is not that common I googled it and basically thought I’d not be here three months on and couldn’t think about my 40th in March as you say never again we are individuals and I’ve had a flipping amazing response to treatment so far (I know they can change but I’m not concerning myself with it)! I’m at 4mnths and have five more chemos then maintenance immuno which I’m praying Jesus, my body and anything also that can help smiles kindly on me and gives me a period of stability!!I’m not sure whether with skin if it’s just skin it can be treated they used a topical cream in some cases looks a bit burnt after the treatment but seems to clear it so who cares I’d take some weird skin to be thriving (cannot remember the name) also if it’s just skin not sure how it works in mets world!! Mine got bad as people just kept ignoring me saying something was wrong with my skin and scar you’ve been picked up quickly which is again positive! I only realised how long my poor breast has been a living Petri dish for cancer for over three years the flip side of that is in the TNBC world for it to have only become metastic in my lymph after all this time is quite a slow grower! It’s good it’s nowhere else I’m guessing the CT would have shown any tumour in your scar tissue although you have the right to ask for a PET scan if you have any concerns I think they are better at picking up stuff. My professor just does CTs with a MRI more sporadically. You are US based so if at any point you feel unsure get a second opinion just so you feel confident in your diagnosis and treatment.
Even when you do know more stay positive as no one can guarantee how well any of us can respond to treatment. I use an app called Allevi8 for managing emotions and healing by professor Ian Gawler he is an amazing man who kicked Metastic bone cancers butt right out of the field in the 70’s!! He has good dietary (although I pick and chose the bits I want from all the anti cancer diets) meditation, visualisation, positive outlook etc. Some of it I’m a little on the fence over past abuse and trauma being a cause as it can wobble into victim blaming which is unnecessary and unhealthy.
Your oncologist will more than likely say not to make diet changes as their main goal is for you to not drop weight I lost a fair bit straight off as I went plant based almost ketogenic so I now have carbs and fish as she threatened to drop me dose of treatment if I lost anymore weight. Although she agreed eating healthy and lots of veggies, pulses, nuts, grains and water is good she has encouraged me to up my protein too but did add what I’m doing seems to be working for me at the moment. She also explained that she wanted me to keep weight in case I had to go on a treatment down the line that caused weight loss and I needed my strength for which made sense to me I’m trying balance now as food can become scary if you are a google researcher you’d probably end up eating just kale in an hour window three tones a week.
You settle into it all quite quickly I don’t cry daily now and remain focused on my outcomes I want... don’t get me wrong sometimes I have a good cry but then I’ll do one of Allevi8s meditations on handling emotions and move on as you said initially I am grateful for each day I have and curling up with the family and watching movies is a very good distraction got to admit I avoid any overly emotional films unless I want a good cry so Halloween films are a good place to be.
You will meet the most amazing, inspirational group of women (There are men but I haven’t got any men they have reached our) in the same or similar situation and they will become your tribe it stops you feeling detached from the world. I have a core of people I separately email with and they brighten up my day we are all on the same treatment so we can discuss symptoms and scans offer support over concerns that you might not want to put in a forum. I have to say so far they are doing fantastically too but even if one of us didn’t we are sisters now.
Moth will be fab also as people who are further into treatment can help with concerns if you end up in the same treatment. If you do need chemo and immuno get your oncologist to check for trials also as some you get ruled out of if you’ve had immuno in a Mets setting and there have been some miracles in the studies as they have more efficacy to change the dose and up it more.
I love star wars I went to galaxys edge at wdw and geeked out last year my aim is to be well enough to cross the Atlantic again in a year or two as my prof said she hasn’t had a mTNBC lady do this yet... my response challenge accepted professor I will be that miracle she thinks I’m bonkers but it makes her smile 😂🙈
Keep us posted and we are here for you lovely sending lots of positive healing light 😊💕0 -
Lulabelle2020, I like that you share. Also appreciate the information.
Happy early birthday to you! It's ironic that you mention birthdays. I got the call late Friday afternoon. My 46th birthday was the next day.
Being able to see the mets is a real mind screw. I want them gone. I've heard of the cream and can't wait to have a treatment plan.
Thanks for the app recommendation. I downloaded it but haven't used it yet.
Good thing I like kale! ; ) I am going to ask my MO about diet today. Another doc mentioned keto to me.
I have seen moth around. Hi moth! Moth, you are an amazing source and I appreciate the information you share.
My husband and two of our girls are big into Star Wars. I'm more into Dr. Who. Do you watch that?
Positive healing light right back to you!
Time to get ready for my appointment. Thank goodness for this site. I'm prepared for the crap that I'm about to hear from my MO. That and Xanax. I hardly ever take it. If ever there was a Xanax day, this is it.
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Hi HappyAnyway,
just popping in to say that I am sorry to hear this news and wish you good look today. I must say this sounds like a real freaky coincidence that you have a skin met on the other breast. I wonder of it could maybe be a second primary bc there (with skin involvement) rather than a met? It seems like too much of a coincidence to have a skin met on a breast given that the breast skin is small in area compared to the rest of the body. Especially for TN, which usually goes to other organs? It does somehow not sound very logical to me.
I hope you get some good news today! Maybe also consider seeking second opinions in a major cancer center if you are not already treated in one.
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Hey mightlybird01! Thank you for your input. My list of questions is growing, which is a good thing.
I got a call from the doctor's office. My appointment has been pushed back a few hours. So, if anyone reading has an idea of what I should ask, I'm all ears.
Prepared for the worst, hoping for the best.
Best to all.
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I obviously have not seen your biopsy report but the more I think about a single skin met to a breast the less sense it makes to me. What if the following scenario is what happened:
The breast tissue is normally closely intermingled with the skin. During your prophylactic mastectomy, the BS has to strike a balance between thinning the skin and removing as much breast tissue as possible. It is never possible to remove all breast tissue under the skin. If you had a thorough surgeon he/she may have been aggressive removing breast tissue leaving your skin thin and more vulnerable. Maybe now, after one year, some of the skin has become necrotic. The dermatologist took a biopsy and found breast cells in there. Concluding it is a breast met. But it could maybe also be surgical changes and some skin tissue dying off, which would be completely benign.
I think unless they already have any information that conclusively shows that this is indeed breast cancer met, I would insist on a complete workup, including US, mammogram, appointment with the breast surgeon.
Good luck!
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I like your theory, mightlybird01. How are you?
I'll let you all know how the appointment goes. I imagine he will order a PET scan. I can't have an MRI due to the TE.
My nurse navigator called. She expects my MO to contact my surgeon, just as suggested, mightlybird01. She already scheduled an appointment with my RO for this week. I have a caring group of medical professionals. I'm thankful for them, as I am for everyone here.
I really hope the derm NP is wrong.
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Yes please report back to us.
I am doing very well. No issues whatsoever. I too have a great team and also am so thankful for that.
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In the room now. Waiting for my boob exam. Says he's going to treat it as a local recurrence unless he is proven otherwise. Scheduling chest CT and appointment with my surgeon.
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Derm offered no details. Just mets. He's going to ask them to check receptor status.
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He's leaning towards TNBC since this has come up so quickly.
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Waiting in the lovely pink napkin. About to put my flannel on over it.
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Until we know more, he's treating it as a local recurrence. Don't quite understand since it's on the other breast.
They're trying to get me in with my surgeon tomorrow, a chest CT on Thursday. Also have an appointment with my RO that day. Back to my MO on Friday.Bottom line, he's not immediately jumping to stage 4.
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So this could be good news in terms of cancerland good news keep positive and as has already been said any doubts get it double checked. Sounds positive if it’s a single met which I was told by a US onc that they refer to it as a met at stage three as it’s just to do with the skin being another organ and being treated as a local they still have every chance of cure.
TNBC is generally a fast grower although ironically mine took three years to become mets none of the professionals listen to my worries over those three years and went by the scamogram (I know they are mamos but not in my household hate them they are so often wrong with dense breasts).
Weirdly for a Brit I don’t watch Dr Who my bestie loves it. I love a bit of Harry Potter though I like shows that that don’t have a cancer theme or storyline as it’s a nice break from reality😊 💕
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Thanks for getting back HappyAnyway. Too bad you have to go through all this again, but better to have answers for sure. The waiting is the worst but everything is lined up within this week, so you will have your answers soon. Hang in there!
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hello happyanyway,
I have had skin mets. I had three nodules come up on my scar line. Biopsy (yes BC but not enough cells to confirm HER) then a surgical biopsy to confirm TNBC. It took many many weeks for the surgical site to heal. Eventually my chest healed then another met developed and ulcerated. Saw several oncologists and surgeons. Systemic treatment was required as the cancer is in the lymph system. In lead up to deciding what chemo another biopsy and pet scan. The result of the third biopsy found the cancer had morphed to HER2 positive. This has enabled another line of standard treatment being taxol with herceptin and perjeta. After 3 months of treatment the met had cleared up and the pet was NED so now I continue on H & P indefinitely.
From what I can glean from your posts, your skin met is more like a rash. Mine have been small hard lumps sub dermal. Only one broke the skin and that was awful. I think I have another forming closer to my arm pit, so expect I may need another biopsy in the next month or so. My research says skin Mets can take many forms. They can be difficult to manage but need to be treated and controlled as best as possible.
I wish you good luck. Please let us know how you go. X
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Helenlouise, thank you for sharing your experience. It's helpful to know what may lie ahead. Hoping mine morphed for more treatment options.
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. Then the crap hit the fan.
My CT scan that was scheduled for today was canceled because the MO office didn't obtain the precert.
I saw my RO today. He's ordering a bone scan. He told me to plan on loosing my TE. I don't want to be flat. That news will be officially given to me by my surgeon next week.
Smh at you for not watching Dr. Who, Lulabelle2020. (Of course I'm playing.)
Thank you all for caring.
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Ugh, I'm so sorry your CT was put off, and also the possible no-reconstruction. I know that's not what you want. Hoping the next news you get is better.
xoxo
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what can I say Happyanyway I’m a bad Brit I used to watch it on a Sunday afternoon growing up on the BBC it was the thing to do then fell out of watching it. I agree shame on me 😂
yes as has already been said make sure they biopsy it well and check your breast well as things hide in the scars. Mine looks like eczema which I get anyway now my onc thinks what I can see is eczema and that mine was a patch of orange peel skin on the side of my breast that I couldn’t really see due to location she thinks the immuno has caused the eczema and thyroid issue which makes sense as thyroid issues also cause skin issues it’s all immune system related although there’s part of me that still thinks they are mets although there are no lumps just red dry patches and shows it’s working even if I could think of better ways for it to show me love as I won’t use the topical treatments I used one before diagnosis and my whole breast went bright red and itchy I think the steroids in it irritated my mets be warned they are tempremental little divas!!!I hope you get your CT soon as helenlouise said the sooner skin mets are treated the better. We all care getting into mets world is a complicated world that is only understood if you have been there and it’s still baffling to us most of the time!! Hopefully it’s dealt with for you super soon and easily 😊🙏🏻
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Hi HappyAnyway, I am sorry you are in this situation. I am ER/PR+ and Her2- but I had a somewhat similar situation to yours: in 2017 my breast cancer spread to my skin, also with no evidence of metastatic disease. I agree that until metastatic disease is detected, it's best to assume that you are treating it with curative intent.
This is the very short version of what happened to me: the cancer showed up in my skin following my original treatment of a lumpectomy, chemo, radiation, and hormone therapy. This was due to needle seeding of cancer cells at my initial biopsy. Second opinion doctors recommended doing chemo again followed by a mastectomy. However, my doctors at the time recommended a mastectomy followed by chemo, which is what I did. However, things went badly for me: the mastectomy was unsuccessful in the sense that I had visible cancer lesions growing in my skin again only four weeks after surgery. Also, the chemo regimen I was taking did not stop the new skin lesions from growing.
It was clear I needed more help than my original doctors could give me. I transferred my care to a large NCI designated cancer hospital, and found really excellent doctors there. Because I still had no evidence of metastatic disease, I was treated with a chest wall resection and a skin graft, a second round of radiation, more chemo, and different hormone therapy. My tissue expander was removed and I have been half flat ever since.
The good news is that the cancer has not returned in my skin again! It was a lot to go through, but the cancer didn't make a peep again for two years. Just recently a PET scan detected the first small sign of metastatic disease, but I still think we made the right decisions with the information we had at the time. Also, I think the extensive local treatments gave me a longer disease free interval than I would have had otherwise.
Knowing what I know now, my main advice to you would be this: get yourself to the best oncology team you can, because where you are matters in more complicated situations like ours. I'm hoping that things go well for you. There are a number of women here who have had spread the skin treated successfully and curatively, do not get discouraged. Please keep us posted and best wishes!
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PS, regarding your not wanting to be flat - you might still be able to get DIEP or other flap surgeries once you are done with this round of treatment. I was not a candidate for it, but my situation was not common. Also, make sure to be evaluated by a doctor who actually does flap reconstruction, because they are the only ones who can accurately judge what your options are. Hope that helps.
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buttons, so sorry to hear you have had another recurrence. Damn cancer. Hope you have treatment pathway that's working.
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