I was just now dx with skin mets
Hi,
I've not had good news since forever—since suspected recurrence in August 2023 anyway, looks like I won't be getting any either. I had some red raised places — not bumps, not nodules, that would get red, then go away, etc. that appeared Nov. 23, the same month I was dx with St. IV. PET scan didn't show this. CTs-four of them—didn't show them. 2 MOs, 2 dermatologists and one NP oncologist looked at them over the past 14 months and kind of sniffed at them, didn't think they were much to worry about, one said keep an eye on it, others have said "huh"…and I finally said I want a biopsy to find out for sure so I finally had one and it is breast cancer and I guess I'm headed for death soon. And my markers rising after only 3-4 months of falling. All signs point to dying soon, it feels like.
All sites say that end stage happens with mets.
Weirdly I still feel fine otherwise but my emotions and state of mind are a real, real mess. I know this is a crazy post. I just found out and don't know what to think.
Claire
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Claire,
It is understandable that you don’t know what to think given the news you’ve received. I am going to be honest and say I don’t know much about skin mets. I did want to address one thing you mentioned; “ All sites say that end stage happens with mets.”
While that is technically true, as we know there is no cure for stage IV, treatments have come a long way in increasing survival time. Although it’s no substitute for a cure, there are many more of us living for years with stage IV and we continue to hope that newer treatments will bring increased longevity and a true cure . So stage IV is theoretically end stage (there is no stage V) but it doesn’t mean death is imminent. There are many members who have been stage IV for years.
While I know this is an emotional time, don’t put your foot in the grave before you have to. Me? 13 years at stage IV and while I realize I’m an outlier , there are more and more of us . Take the time to experience all the emotions connected with this news and then, once your tx plan is in place, move forward. There are no guarantees, no crystal balls, but things may not be as bleak as they seem. Take care
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Thanks ex, I appreciate it.
It's so hard for me to wrap my mind around this—still another blow, though I guess I suspected but thought that since so many MDs/NPs examined me and didn't seem too interested in this discoloration, I shouldn't worry. Also doesn't present as typical, at least the photos, and that's what the latest dermatologist also said. It's like a discoloration that comes and goes.
I don't know how it's treated or any of that. I have to wait till I see my MO on 9/30. I hope someone who is being tx or has been tx for these can give some insight and perhaps some more reassurance. I alternate from dark to light these months.
I'm also considering changing MO's. My doc is good, and I'm sure she's a lovely person—she's been kind, and all that—but I don't think she "gets" me, since she's pretty serious and not very reassuring when I need her to be. Even a shred of reassurance gets me down the road a very long way.
claire
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@claireinaz, we're so sorry to hear this news. We agree with exbrnxgrl; try not to go to dark places until you know more about what you're dealing with and how it might be treated.
Have you checked out the Skin Mets thread for some insight? You may want to post there also.
We're all sending big hugs to you!
—The Mods
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@claireinaz, I am so sorry to have read your latest news. I know it is easy to say, but hang in there. In your pocket with support.
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thanks Mods, but not one member has posted there in over a year, so it won't be much help, I fear, and then I wonder why not one has posted since then, meaning perhaps they aren't with us any more.
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claire,
While it certainly possible that some members with skin mets have died, I would say that the thread is probably inactive because skin mets are not as common with bc as the typical sites (bone, liver, brain lung). In my 13 years here, members with skin mets have been rare, but not unheard of. So don’t view it as people with skin mets die quickly , rather that skin mets are uncommon.
All stage IV, metastatic, patients face an uncertain future as it is not curable but treatments and survival times have greatly improved things. It is impossible to predict the course of the disease for any given individual , even MO’s can’t do that. So although it is technically correct to say that stage IV is terminal (and it still is for most eventually ), you may have many, many years ahead of you and better treatments may be available by then as well.
I try not to sugar coat things so I don’t want to pretend that stage IV is curable or make any guesses regarding an individual’s lifespan, but I am also very encouraged about all the tx options that have prolonged the lives of bc patients in greater numbers than ever. And I’m not saying that just to comfort you but to help you understand that although stage IV is serious it is not likely to be an imminent death sentence.
Claire, I was essentially stage IV de novo (long story) . I was sure that I had little time left, yet here I am 13 years later. I know it’s difficult in the beginning but it will get easier.
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Hi @claireinaz, We know that thread is a little quiet, but we thought maybe you could read through it to see the types of treatments people had and if it helped. There are many reasons why the thread might have gone quiet, including as exbrnxgrl said, because skin mets are rare. However, we also thought maybe if you posted about your situation there, others that have posted in that thread might see your post and weigh in with their experiences. Just a thought. Hopefully others will also see your post here and weigh in with support.
Sending hugs,
—The Mods
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hi Claire, @claireinaz , I am so, so sorry to hear about skin mets! It is certainly shocking especially since several doctors kind of dismissed them. No wonder your emotions are all over the place! Mine certainly would be!
I don’t know much about skin mets, but I believe that one lady from my chemo group (May 2019 group) with TNBC, had skin recurrence which was successfully treated with surgery and chemotherapy.
As devastating as your news are, please try not to think that this is the end of the road. We don’t know what we don’t know , stage IV is a rollercoaster for sure… BUT… As @exbrnxgrl said, treatments are getting better and survival times continue to improve.
Please, keep us posted on your treatment plans.
Sending you lots of good vibes and support, you are in my thoughts1 -
@claireinaz I too have skin Mets. My first MO said it was local advanced disease, but my new MO said it is metastatic disease. Either way, she says it can go away quickly and come back just as quickly. She has seen it before and worked with it before. So she wants me to have a long range treatment plan. And that is the path of all stage IV conditions, as far as I know.
Mine showed up in a January 2024 all over the right breast where I have a recurrence of a large 10 cm tumor, with nodules erupting on the skin a dark purple color. The skin is treated by systemic chemotherapy along with the tumor . I was on Enhertu but it only helped the tumor slightly and the skin got worse. Now I’m on Trodelvy since June, and the tumor has thinned and fragmented down to almost nothing (yeah) and the skin has cleared greatly. No more nodules and a light pink now. Unfortunately looks like it is coming back with little dots on the surface, in two areas (ugh) but they are small. Also the new dots have not been biopsied so we are just going to keep our eyes on it for now, and stay on Trodelvy. I see her again 2 weeks.
We also talked about radiation but there is no data on how that might work with Trodelvy and skin Mets. I might have a consult with the radiation doctor, my MO is going to think about whether that’s a new direction to consider. Either way it’s a continuing chemo path for now . I have very minimal SEand am happy. Live each day and not allow my mind to be a run away train of stories based on conjecture and fear. That’s the meditation accept and relax, savor joy. I’m realistic but positive and I believe in my ability to recover and not ever give up. Hope that is helpful. Happy to help cheer you on. And Happy to post updates here and we can share our experiences.@lacombattante and @exbrnxgrl !- love what you posted, and agreed! The best medicine you can control is your mind, your powerful creative mind. This journey is filled with setbacks and successes. I keep a gratitude journal, and every evening I write down three things I’m grateful for and why, it is very uplifting. SE can be managed, and emotions can be honored and the mind trained to accept and seek the good and feel joy. It’s the nature of life, it seems to me. Happy Tuesday
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hi rlschaller, thank you for the info. I am assuming you lost your hair, and also will be on this infusion for a long time?
how is your energy level and did this drug also positively affect the rest of your cancer if you have any other?0 -
@claireinaz yes the Trodelvy caused me to loose my hair. I wasn’t happy about it, but it was not unexpected. I bought a fabulous wig, which I love. I even named her “Leya” lol. I went into work today, and my colleagues could not tell it was a wig. I mostly work from home on zoom calls, but it was nice to go in as well. Tiring but normalizing. I’ve been on this infusion for 3 months now, and I’ll stay on it until it stops working. I am going to do radiation, I spoke to the radiation oncologist and I’m scheduled to start on Oct 14. It’s supposed to be very good for skin Mets, so we’ll see. My energy level is great . There are 3 days a month I feel tired but it’s manageable . I am committed to eating well, mostly vegetarian and I Exercise and meditate. That and a positive mindset really helps me. My quality of life is good, and I try to contribute healthy habits so I can support my body to naturally be in a state of wellness, even with cancer. And yes, the targeted therapy drugs, Enhertu first and now the trodelvy have resolved the other cancer dots found at my neck, and armpit and lymph nodes. Now it’s just the breast. I look forward to being NED …but Stable is also a good outcome. I feel good and am grateful for that.
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I've been through the hair loss and wig experience before. I hate wearing anything on my head now because of it. And no one could tell the first time I wore a wig, but I didn't find it anything to celebrate. When my hair began to grow back I took that sucker off when I wore it in public and never looked back…I thought.
I still don't know what kind of tx I'll wind up with. New oncologist is looking at mutations. We found out that it is ER - which is a real bummer.
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I hear you Claireinaz, it’s always something. Sorry about the mutation. I’ve heard of it before, and I think they have some good drugs for them. Keep my posted on how that goes for you. I’m rooting for you. Not sure if I mentioned this book before, but it helped me tremendously You Can Conquer Cancer by Ian Gawler, has meditations, positive affirmations, diet, some wacky spiritual stuff, practical advice, etc.. might take a look. Or ignore….just wanted to share what has helped me.
Also, I don’t want to wast my time with things I can’t control so I try to accept and recognize the hard stuff and notice how it makes me feel . Whether it’s sad or irritated .. whatever the emotion is .. it simply is and it’s bummer for sure! And sharing 8n the forums and zoom mtgs very helpful too. And Then I try to turn towards myself with acceptance and kindness, cause I don’t want to miss this life lost in feelings of loss - acknowledge it but not rum8nate in it. , so I look for ways I can celebrate . At night I write down three good th8ngs that happened that day before I go to sleep, sounds sappy but it helps. My body keeps up its resistance and then gives in, for 2 years now. So making a lem’nade out of lemons is my choice, not easy but I’m going down happy if it’s the last thing I do!
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