TNBC metastasized to skin

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 😊🙏🏻

We're here for you.

Much love,

Mia

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 😊💕

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.

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!

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.

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😊 💕

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

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

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!

buttons, so sorry to hear you have had another recurrence. Damn cancer. Hope you have treatment pathway that's working.