'Benign' cyst removed and has turned out to be in my bones and lungs and obviously in my skin. ER, PR + and HER-. All my research tells me I am doomed as skin mets are meant to be terminal??????
My oncology team were so upbeat, started on Letrozole and Ribociclib and Denosumab. I have no symptoms at all, apart ofr a patch now on my back confirmed as malignant.
Does anyone have any knowledge or experience of this skin met? Oncology team seem to think the systemic treatment will attack the skin as well. I do not believe they would lie but they have talked very positively about some hope for a few years if the first 6 months goes OK
I am terrified and frightened; the reading has convinced me I'm on my last legs even if I do not feel it. there is so little info about skin mets.
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Lizzietosh
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hi Lizzietosh , I am understanding how you are feeling right now , I remember them days , it was awful , I had to see a doctor and get medication to calm me down , I am still on antidepressants now , but I won’t be without them , they take a while to work , but my god they really help me , I don’t want to encourage you feel like you should take medication , there are other therapy’s to help with the stress , like a mindfulness course and. cbt therapy , honestly it won’t be as bad as you are imagining , it’s coming up 4years since I felt like that , I have mets un both lungs , I am on Ibrance and Letrozole, I am doing really well, I never though I would ever feel like I do now , don’t get me wrong I do have bad days but my god, nothing like them first weeks of diagnosis I do hope you start to feel better soon , we are all here for you on this site , I have had so much support and comfort from the lovely ladies and some men , coming in this forum , anytime you need any help , comfort, support , we are all here for you , sending hugs , take care xx❤️xx
lovely reply - and it helps- knowing progress can be made - glad you’re doing so well- I am starting back on Ibrance and aromidex again- and hope it stabilizes some new mild progression
Thanks for your lovely words of support. Its just that I can find no information at all on the skin mets and the patch on my back is growing. I really hope I can see 4 years on and mu grandchildren grow up. I ahve to ask the team the dreaded question...'how much do you know/have experience of skin mets?' But i am afraid of the answer. all the web tells me is I am in terminal stage of the disease and have less than 6 months. Strange as I really still do not feel ill in any way except for this patch on my back! But again, thanks so much for your response.
You are very welcome , I do understand you are worried , you are not over reacting , my husband was so insensitive with me in the first few months , I now realise he didn’t understand how I was feeling , he is a lot better now , although still not very sympathetic , lol , and not a very good listener, , I don’t need his support now I have this forum lol,🤣 at the time I was so stressed and couldn’t get my head around my diagnosis, I get it now , Please stay away from google , I got so addicted to google the things I read , honestly I thought I had months to live , I was so obsessed , it made me have panic and anxiety attacks , a friend of mine told me to stay away from statistics , they are outdated , new treatments are coming out all of the time for all metastatic cancers, take care xx❤️xx,
Originally diagnosed with cancer in 2006, I've had breast cancer in various parts of my body since at least 2019. I have small skin mets in my neck, upper arms, torso, and probably other places I've not noticed. I've never read that skin mets are "meant to be terminal" in any legitimate cancer publication. That makes absolutely no sense to me!
If one wished to get rid of skin mets, it seems to me most could be cut away. I'm 78 years old now, and consider my skin mets the very least of my complaints. I take ribociclib to control the cancer in my inner organs, not my skin.
Thankyou Hazelgreen, you have given me a sense of balance back and some perspective. I think if my team were concerned they would refer me to Christies or the Marsden. My husband who was with me a t 1st appointment thinks I am really over reacting. I have started on letrazole and start ribociclib on Wednesday. Thank you again for youer words of wisom
Hi. I was diagnosed with MBC in 2022. I had a fungating breast wound plus some skin mets around the breast and abdomen, as well as mets to liver, lungs, and spine. I've been taking Ibrance and Letrozole since diagnosis. The skin mets are still there but the wound as dried up. The oncologist has not shown any concern about the wound or skin mets and has never said I am terminal because of them, or suggested having them removed. Sorry I can't be more help.
Ashtead, you have been an amazing help. It is so helpful to hear from people who actually have these instead of the dreadful gloomy Google. Thank you for your quick answer.❤️
Beware of Dr Google. It’s an impulse to go there when feeling afraid, but for cancer diagnoses, Dr Google is not your friend. Much information is old. I’m glad you found your way to this forum. We are here to answer questions, provide hope and support one another.
I have skin Mets on my chest and the majority have cleared up with Enhertu. Mine were extensive as my chest used to look like someone spilled popcorn all over me. Take heart !
The word, "terminal" is bandied about indescriminately by the professionals. If they only knew how it is such a terrifying arrow into our hearts, I believe they would think twice before ever using it. We on this wonderful forum are all victims of this word. I personally like to think of MBC as similar to type I diabetes. We and they have to take drugs for the rest of our lives in order to stay alive. They use the word, "chronic" which is slightly inaccurate for us but more easy to digest. Please do not worry too much. The longer you are one of us, the less time you will spend worrying. Here's to your good feeling of health! May it continue!
I just want to add everyone in this life is "terminal." No one gets out of it alive. There are accidents, shootings, stillbirths, heart attacks (like my husband that died), etc. We are the ones that get to have quality of life knowing that our chronic illness is just that chronic. Others in life don't necessarily live with knowing everyday counts. I always hug my loved ones and tell them I love them even if I live 10 or 20 more years.
I totally agree, I know this sounds crazy, but I feel lucky to have scans and blood tests , at least I know I am monitored for any more health issues , I also feel lucky to be able to access the treatment I receive , this would not have been as accessible a few years ago , new medicines are coming out all of the time , thanks to cancer research and the fantastic team that research our treatments , I say to people , I am living with cancer just like all of the people who live with chronic illnesses and disabilities, I am truly grateful for the care and support I receive , don’t get ne wrong , I still moan about silly things lol , but I do see life differently since my diagnosis , I also appreciate things a lot more , and like you say , hug my loved ones and feel blessed to gave them in my life ❤️
A lot of good ideas/treatments never make it to trial. Also some great cancer Facebook groups.
Lastly, high dose, preferably full spectrum cannabis oil (like Rick Simpson oil which shrank my lung mets when herceptin stopped working. I was on maintenance dose till I started off label drugs recently.
Rick Simpson used it topically on skin cancer.
I now take dipyridamole to keep herceptin working and I use artemisia annua tea (strong black pressure or slow cook till opaque) as a retention enema - unpleasant but not horribly so - with good results. I got idea from a man who used it to control untreated (!) lung cancer with mets to brain for almost a decade?. He was also doing special cancer diet called Budwig diet which I don’t tolerate. But for me combining standard of care and alternative remedies is successful so far. I did Prenuvo whole body scan and was clean (insurance won’t pay for pet scan yet)
Hello Snowday and thank you. A brief trawl suggests the mighty FDA does not ridicule these studies and the ones I have been reading that scare me witless and that have mentioned terminal when it comes to skin mets have supported the general theory that although no cure [which I know, well theoretically, have not accepted it emotionally yet] they have helped in preventing spread and in reducing size in some cases. I need to check NICE [UK resident] and my specialist nurse but I am going to listen to my daughter, a mighty Oil advocate and give it a try. I'll keep you updated.
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