Alopecia - more metastasis

Third time with BC after original diagnosis in 2004. Recurrence 2014. Now.it is stage 4 diagnosis in June 2018 into sacrum. Tolerating Ibrance and AI well. But I’ve developed bald spot on right top scalp. First noticed scalp bumps. Now it’s size of quarter. Dermatologist took biopsy last week. Scared it’s cutaneous metastasis. Anyone have insight or exoerience with this?

[Barbteeth]

Hi there

I was diagnosed with mbc in April and on same combo as you though my markers have risen lately which scares me as I want to stay on these drugs as coping with them

I’m sorry you’re worried and I have no pearls of wisdom regarding the scalp thing but I want to say I’m thinking of you

Hate this bastard cancer its spoilt our lives

Having said that..just been out on my horse (on strong painkillers though) and it’s taken my mind off it for a while..I think of it most of the time and even on Christmas Day I went upstairs for a cry as didn’t want to upset other people

All the best to you

Barb XX

[nstonerocks in reply to Barbteeth]

Ah, Barb. It is hard, isn't it? We were robbed of the innocence and naivety that life will go a certain way and that we'll die in our sleep at 90. In my case, I was hoping to get hit in the head by an asteroid at about age 85. My parents lived to a ripe old age. I made certain assumptions. And now? A calendar filled with doctor visits and tests. A cabinet with meds you see on those dreaded cancer commercials, fatigue, pain, and constant insecurity that you will make it to next year, let alone 5 years or more. I cry about once a week. Maybe more if I'm really tired. I try to keep it to myself. And it doesn't last too long. This has been going on for 4+ years, and I too don't want to exhaust others with my sadness or anxiety. No words of wisdom, 'cause there isn't any wisdom that makes this better. Just things that make life still worth living and things that ease the pain, fatigue and anxiety. It's hard striking a balance, and that balance is elusive. There will always be that sense of loss, and we must fill it with the things we can do and look forward to. In the end, everyone's headed in the same direction. This path is a harder one to handle, no doubt. I stuffed myself with (organic) Oreos today. Sometimes the antidepressant isn't enough. I'm glad you had a good run with your horse, painkillers and all. I hope your Christmas was otherwise a lovely day spent with family. Although I dreaded hauling our tree out of the basement and hanging all the ornaments, I love to lie on my couch in the dark with the tree lit up. Peaceful.

[PJBinMI in reply to Barbteeth]

Barb, Hearing "you have cancer" is pretty darn hard! Personally, I think a person would have to be a tad nuts, or in denial, to not be upset, especially when the cancer is metastatic! It feels so outta control....a friend likened it to being on a huge roller coaster blindfolded! I have been living with mbc for 14 years and 9 months and I remember my first year or 18 months as some of the hardest time in my life! Cancer was the first thing on my mind when I woke up in the morning and last thing on my mind before I fell asleep at night. I got an ache in my belly and my blood pressure spiked every time I walked into the cancer center! Time, a good response to treatment, and meeting others (both face to face and on line) each helped alot and it's hard for me to sort out which helped the most but the constant thoughts and fear did settle down. We have no real control over the cancer cells and that is difficult. I set out to control what I could....keeping appts with my onc, taking the meds, learning everything I could about bc and mbc, doing things that give my life meaning. Gardening, walking the dogs, keeping my family ties and friendships strong, advocating, reaching out to others. And a sense of humor! I found ways to make fun of cancer! Lists of silly stuff having to do with cancer. My brother and daughter have been great at helping me laugh at cancer and I share this absurd cancer business with them and my husband and a couple of close friends. I've invited all of them to come to onc appts with me, not a crowd all at once. I also got a second opinion from a bc specialist onc at one of my state's two Comprehensive Cancer Centers. (Those are the top cc s in the US and they have bc specialists who do second opinions, covered by insurance and very reassuring. CCCs listed on the website of the National Cancer Institute, harder to find that list than it used to be.) My life has changed, that's for sure! I "retired" early, at 58, and easily qualified for Social Security Disability. My husband and I had each been single parents for a long time and know how to pinch a penny til it screams, so when we got married, we had a chance to save money for retirement and after I got this diagnosis, I quit worrying about supporting myself til I'm 100 (very long lived family) and we splurged on a hot tub and Alaskan cruise during my first three years with mets. I cried alot during my first few years but now I hardly ever cry and when I do, it's more likely to be over something that has happened to somebody else, or their pet, than me and cancer! In my prior life, I spent alot of time with the dying, both family and friends, and cancer was NOT on my worst way to die list! All the people I've known who have died from cancer have had a "good death" with excellent comfort care and family and/or friends there with them. I'm not afraid of dying or of being dead, so that helps. My life is more limited now than it used to be. I don't have the energy I once had and sometimes going to the grocery store knocks me down for the rest of the day. I still do our grocery shopping, laundry and I cook dinner at least 4 nights a week. I shower and dress almost every day. I still drive and walk the dogs and take pets to the vet. I am as content with my life as I have ever been. I love my husband and know in the deepest parts of myself that he loves me. I am still me. I will never say that cancer has been good to me, but it hasn't been the end of my world either. I still enjoy the sunset, the woods, fresh fruit, a purring cat on my lap, classical music, and a good cup of coffee in the morning!

[roberta8386 in reply to PJBinMI]

Thank you. Your life story is so reassuring. Life goes on even as we face death as some unknown point. Great perspective. I needed the reassurance today - good for tomorrow.

[Barbteeth in reply to PJBinMI]

Thank you..you have helped as always

Just been for a ride..washed Bugsys muddy tail!!! And now relaxing..it’s very muddy in the field and even though I cut his tail shortish it was a state..not that he’s bothered!

All the best

Barb xx

[Juliandrea in reply to Barbteeth]

Barbeeth, I would love to see you ride that horse. One of the most beautiful things in the world is the strength, love, loyalty and beauty of a horse and the bond between the horse and it’s rider. It makes me smile.

[Barbteeth in reply to Juliandrea]

I absolutely adore him..I’ve had horses all my adult life and loved them all but he’s the special one!!

Barb xx

[PJBinMI in reply to Barbteeth]

Bugsy is your horse? I had horses as a kid, but don't ever remember washing a tail! lol People down the road from us have an interesting herd of horses, miniature horses, a miniature mule and donkeys. I can't drive past them without smiling.

[nstonerocks in reply to PJBinMI]

To paraphrase Groucho Marx, “I’m not afraid of dying, I just don’t want to be there when it happens.” I’m in that camp. Your words are reassuring. Wish I were as grounded as you!

[rubyc1234 in reply to PJBinMI]

Very beautifully written! I was diagnosed with MBC in my lungs in March 2018. It was 14 years from my initial diagnosis. I was put on xelota and I have responded well. No side effects and the lungs are 90 percent better by about December 1st. I was devastated but have come to a much better place with it all. I just turned 66 and they tell me this is a long term and manageable thing. I look at so many my age and they may not have cancer, but they are struggling with things like diabetes, multiple sclerosis, and arthritic pain. WE are all headed for the same place and with the help of the meds I am anticipating that I can manage well for several years. I am enjoying life again and it feels good.

[laurac1014]

Sorry you have to go through that. Thanks for the heads up 😅 something else to look for and not ignore!

[Hidden in reply to laurac1014]

“Heads up” - I see what you did there. 😀

[PJBinMI]

I don't have experience with baldspots or cutaneous mets but I have much too much experience with an E+ mbc and bone mets. If you have just a very limited number of mets in your sacrum, there are oncs who believe that a "cure" sometimes can be achieved with stereotactic radiation to the bone mets. Stereotactic radiation is the highly focused kind of radiation like Cyberknife and Gammaknife, maybe some others that I don't remember at the moment. And some of us who have a good initial response to hormonal treatment live for a long time! I was diagnosed at stage IV with "extensive" bone mets and no symptoms, almost 15 years ago! I had a lumpectomy, without clear margins, and have been on hormonal treatment ever since, plus bone meds for most of the time though I had to take a long break from those after back surgery, unrelated to cancer, revealed that my bones were brittle on the outside and soft on the inside. Oh, and I wanted to tell you that I have not heard of cutaneous mets from bc. Bone, liver, lungs and brain are most common site for mets, and those of us with lobular mbc sometimes have mets that show up in odd places, often tissue that lines some body part, like the heart, abdomen or eye socket. I hope you do as well as I have! The length of time between your original diagnosis and the mbc diagnosis is a good sign, too, not likely to be an aggressive cancer, more likely a slow lazy bunch of cancer cells! MBC is never good news, but you do have things to be hopeful about!

[Burgerde]

I have had skin mets since before I was actually diagnosed with stage 4 August of 2017 after stage 0 with lumpectomy 2007. I had been to dermatologist for something unrelated and asked about a nodule on my abdomen and told it was a cyst. Well turned out to be skin met. I also had several on my scalp, neck. Recently they have spread and I now have about 12 of them. I know they are the same tumor cells because I had some biopsied for a DNA test. I have been told various things as far as if chemo gets to them. I have multiple brain, liver,lung,bone, and an eye met. I had total brain radiation and this got rid of all but one on my scalp. This lasted a year but they are spreading again. I have failed I've taxon and several other oral drugs. Just started affinities but blood work not dealing with it well. I lost all my hair with the radiation so can't say much there. Wishing you the best.

S

[Hidden in reply to Burgerde]

Thank you for sharing your experience. The biopsy confirmed scalp Mets. I have a full body scan scheduled for next week. Meeting oncologist on January 7 to figure out options. My tumor markers dropped a lot after I started Ibrance. She said the scalp Mets isn’t unusual but the hair loss around it is. I hate being an interesting case.

[Burgerde]

I will be interested in what they tell you as I get the impression multiple skin mets not all that common. My thoughts an best wishes are with you.