Fall of '14 was diagnosed at age 37 w/ stage 2 bc. Bilat mastectomy, 4 rounds of chemo then put on Tamoxifen. No scans recommended, just PE's & bldwork. Fall of '17 had sensitivity on my left upper sternum. Dr wrote it off as cartilage soreness. Finally in Feb '18 a lump appeared in that area. Rad, bone scan then finally a PET scan. Mets to various bones. Stopped Tam. Started on Ibrance & Faslodex. 6mo reck PET scan showed improvement to some areas of bone however new mets in other bones & now mets to liver. The largest 1 is 2.9cm. I refuse to go back to norm onc. Have an appt Fri with Fox Chase & U of Penn on Mon. I have 2 daughters 8 & 11yrs old. I just don't know what to think anymore. It's hard at this point to even stay positive. I am 42. Too young to succumb to this horribly disgusting dz and leave my girls motherless.
Liver mets: Fall of '14 was diagnosed... - SHARE Metastatic ...
Liver mets
You are too young to succumb to this horrible disease, and that is why you are going to a great Cancer center, looking for a sharp oncologist who is going to find the cocktail to put those lesions to sleep. Keep following your gut instinct to get the best care possible. The longer we all stay alive, the greater our chances of being here when the next groundbreaking treatment is found. I feel for you, with 2 young children. It is hard enough when you are an older woman who has raised her kids, like me. Right now it is so new to you, it is shocking and catastrophic and unspeakably depressing. Gather the people and resources who can support you and get you through this darkest time. It is never easy, but I think emotionally, it is worse at the beginning. I can't believe I got through those months. I certainly wouldn't have without my husband, SIL, therapist, meds and my Oncologist and her amazing nurse. I hope you will find the right doctor for you who will treat you, body and mind. 4 years and doing well here with mets to lungs. Many more with 10+ years. More treatments, better treatments. This board is a lifeline of compassionate women who know what you are going thru and will support and encourage you. Let us know how your search for a new doctor goes. Share the good and the bad, we are all in this together.
Thank you for the words of encouragement. It is much needed at this point in time.
Hello there
I just read the reply from nstonerocks and her reply is wonderful and says what I want to say to you
My girls were 2 and 6 when I had my first diagnosis and the pain in my heart every time I even looked at them..it’s so hard when you have children
However you are being proactive and seeking the best care you can..we have wonderful treatments available now and you will find one that works for you..just keep telling yourself that you WILL see your girls grow up
Best thoughts to you
Barb xx
Thank you for taking the time to write to me. It means a lot to me. Is that you in the dressage pic? I used to event in my younger days.
Hi there
Yes that’s me last year before the dreaded diagnosis ..wasn’t feeling good then but unaware of what was to come!!
My horse is therapy
Barb xx
I think all these ladies have some wonderful insights. I agree about trusting your gut and going with the onc who feels the best for you. It’s a struggle every day. I’m now 40 and have been Metastatic for 5 years with bone mets. I felt like I was ignored in the beginning and maybe I wouldn’t have ended up with rods in both my femurs but I try not to go there. My onc I really like is leaving so I’ll have to advocate for myself again for the best onc for me so time to listen to my gut again too. Sending good thoughts your way :0).
Oh man..... I am sorry to read that about your femurs. That must have been a rough time for you. I wish you all of the best in the future. Thank you for sharing a fraction of your story w/ me. I just wish I knew then what I know now. Yes, it's incurable (for now), but the ball could have got rolling much quicker if I was wiser & more demanding.
I totally feel the same way. There is so much to learn and it never stops. It’s a full time job taking care of ourselves.
Dear thornson, Please, please don't beat yourself up. I missed a mammogram. I was at war with myself for a long time. I had to let it go. As one wise woman posted to me, we did not ask for this. We do the best we can. I had so many women in my family who had breast cancer and were "cured," when I was first diagnosed I thought, "walk in the park." One hell of a scary park! What did I know, and I am a nurse. Please talk to yourself nicely and don't add guilt to your load. You are moving forward now, you are wise and strong.
Hi,
I just wanted to write and offer my support too. It is important to try and stay positive. I know that is easier said than done with this disease, but I really feel it helps make a difference. I hope that the appointment on Friday goes well for you. I am always looking for ways to best advocate for myself, and you can do the same thing. Hopefully, you have a good support network that can help you as you move forward with your treatment. I look ahead to some of the goals I want to achieve and that helps keep me going. I wish you all the best for Friday. But not just on that day, every day as a new treatment plan is found that will target the metastases and hopefully move you towards NED.
Take care,
Sophie x
Thank you for your support Sophie. I actually feel slightly better after hearing from a few people and reading others stories. I am certainly not the only one coping w/ this dz. Let's hope the optimism still sticks after my upcoming appt's.
You're welcome! I'm glad you are feeling slightly better. Hopefully that feeling will continue to improve after Friday's appointment and with subsequent appointments.
Aw, Thorson, my heart aches as I read your post. Damn that oncologist who didn’t recommend an abundance of caution.
My situation was somewhat similar. Stage I BC in 2000. Bilateral mastectomy but because there was no lymph node involvement, no follow up tamoxifen was even brought up. 17 years later (November 2017) mets found in my spine.
Our sad lesson: you can never be too cautious with this insidious disease. My heart ❤️ and prayers 🙏🏻 are with you and all women fighting this fight. There are so many treatments today that provide hope. God bless you and your two girls!! Love, Linda
Thank you Linda
Hi
I will think of you tomorrow
Barb xx
Thank you Barb 💖
You’ll feel better when you have a treatment plan...the waiting to be seen is the pits...we’ve all been there at some point and understand
All the best
Barb xx
I am so sorry that you are going through this. They do keep coming out with new treatments and new research. Many oncologist believe the cure is in genes and so many researchers are involved in gene study . Hopefully, it will help us all one-day but especially those of you with young children. Blessings to you. Hannah
Thank you for the encouragement Hannah.
Hi Thorson! I admire your courage to get a second opinion! I really want to but my support system really likes where I’m at. (It’s 10 minutes away) I really think u have to go where your gut is telling u u can get the best care!
Blessings and prayers for your appointment on Friday!
Thank you!
Rhwright you should go with your gut too! Too bad what your support system thinks, it never harms you to get a second opinion. Sometimes it is reassuring to be told the same thing as your present doctor. Sometimes it can reaffirm your doubts and you can seek more appropriate treatment. Depending on where you go, sometimes you can stay where you are but be guided by the place where you sought a second opinion. It is your life, even if the others are helping you. xx
My children were 2, 5, 8 a,d 18 at first diagnosis with highly aggressiveBC. 21 years later, I'm still here. You can do this but it takes a new lifestyle. So many things I have learned this time around. One of the most important things is that you need to find a place of peace from within. Not easy I know. Also that your children keep you going. You need to cut out all sugar and white flour. Look into tapping on you tube--largely helpful to get your shit together at those, all the time, time you need to work out anything!! If you are a person of faith, prayer and of others is helpful to all. You live in the Philadelphia area, where? I am from that area.
Thank you for writing to me. Not sure what you mean by the you tube statement. I live in Mountain Top.
When you say all sugar are you also referring to fruit sugar?
I do eat berries blueberries and raspberries when I can buy the organic or at the farmers market. I also eat some red seedless grapes along with my bud wig diet cottage cheese flaxseed mixture I cut grapes and put them in and hugs and that makes it very good
Look up brad Yates on YouTube. type in any emotion to comes to your mind and follow what she says verbally and does. It’s going to seem strange and silly in the beginning but will find, I believe, as I did, tapping to be hugely beneficial. It will oddly help you uncover things that you’re not even tapping about . Good strong scientific evidence of its benefits for helping relieve stress and therefore healing. Also I strongly suggest buying a good quality L theanine and a sub lingual melatonin. The L theanine I take every morning on an empty stomach one 500 mg , melatonin you can start with a 2.5 I like the orange flavored make sure it’s the sub lingual and take that 30 minutes before you go to bed. Both l theanine and melatonin Sloan Kettering shows to give people with cancer a longer life. people assume that the melatonin is simply all about sleeping but that is not the case there is some other component that helps battle cancer but the scientist don’t know exactly why that is they just see strong evidence suggesting so. Melatonin is killed off not only from menopause but also from chemo and radiation.
Everything in cancer is
What went wrong with our immune system’s. Strengthening that is critical and healing
Too many to pick from, what L theanine brand do you buy?
I’m not home now so I’m not sure as I take many different types of supplements. I am super careful to buy things that don’t have soy or a vitamin C for an example that’s made from corn which many of them are but offhand I don’t know the brand. When I get home I will send it to you. I love L Theanine!!!!
You can order both from Amazon I’ll send you names in a little while
I know w/ Ibrance you are supposed to stay away from Grapefruit. So I guess if I read the ingredients it would specify what citrus products. That's even if I will be staying on the Ibrance, which I highly doubt.
Mountain Top is NE Pa near Wilkes-Barre/Scranton.
That makes sense, my brother lives in the Delaware water gap and my cousin used to live in the Poconos. Fox Chase, as you know has a wonderful reputation for cancer. But I did go to the Cancer Center, Primerica and Philadelphia and Haidet that felt like it was a total waste of my time and not up to par with the standards that I was used to
You don’t have to worry about the vitamin C and grapefruit. It’s just that most vitamin CSource Comes from corn and you want to avoid corn. You won’t find an event in the medical literature and you won’t find out on the vitamin C ingredients either. If you’re interested in a vitamin C I’ll take a picture of mine and send it to
Look for l theanine 200mgs. by Symnutrition
take one every morning before food.
If looking for VIT C try EcoLogical Formulas Vit. C 1000mgs. not from corn source and can be taken on an empty stomach without acid issues, etc.
I will look into all of that, thank you! I have trouble sleeping so I do take Oral 5mg Melatonin. I will purchase the sub lingual tabs.
Definitely use sublingual melatonin!!! I do take 5 mgs. now of orange flavored by source natural. There is sorbitol in it but must be really small amounts--they are so tiny. Absorbed right away and not through your digestive track.
I was raised in Pennsauken, no and Cherry Hill. Where is your Area? I’m not familiar with that part of Pennsylvania
Cancer sucks and only those that are living with this disease understand
It’s a 24 seven job to try to stay alive and more importantly get yourself back toward position of health. But I firmly believe, that we all have the capability of going into remission. Whether the doctors tell us that or not, which they don’t. People do it every day there is no reason it can’t be you or it can’t be May. But it’s a lot of work trying to get our immune system to respond positively to the way we think what we what we do how we live. Dad is an uphill battle that we can reach the pinnacle. I am one to listen Buddy is telling me on a daily basis and then trying to do and go in the direction that that leads me too and every day. I read everything I can get my hands on. And not with the medical community in the pharmaceutical community says it’s going to happen to me or what I should be doing.
Sister/Warrior: I know life's challenges can knock us down, but continue to fight to live to enjoy as many milestone celebrations with your daughters. May the almighty God I/we serve give you restoration , and I pray you and your loved ones will have the perfect peace that only God can provide. Remember this God will not leave or forsake you. XoXoXo
AMEN!! Just 1 prayer can be life changing.🙏
Amen
You have come to the right place for loads of support. I was diagnosed in late 2013 and had a right mastectomy - no lymph node involvement and all seemed well. Had 26 radio sessions "just in case there was any deeper cells we had missed" and then Tamoxifen. Within a couple of months I didn't feel good - very tired indeed - and my oncologist immediately ordered CT which showed up a small (2.5mm liver spot) so treatment changed to Letrozole. It worked well for 3 years then signs of high markers resulted in another scan which showed liver met had grown to some 4cm. The only treatement available on my medical scheme was Xeloda for a year followed by Navelbine then Faslodex but no success (I do not have access to things like Ibrance and affinitor was turned down by my medical aid!) My oncologist maintains that I seem to know when things are not right and if I feel bad in due course I will have to go on IV chemo which I dread. Meantime no treatment and I am in my ending my 5th year and feeling pretty good. Just hope it lasts till something else comes along to help. Each of us react differently but it looks as if the prevalent "good medicine" is a positive attitude.
Good luck to you and keep your chin up - the next meds might just work for you!
Izzy
Thank you Izzy. Sorry to read about the Ibrance. I had to jump thru hoops to get it for free. Totally outrageous what it would cost to buy it outright or with partial ins coverage. I am glad to read you are feeling pretty good. I wish you all of the best. Is there only 1 spot on your liver?
Last scan showed it had grown to about 7cm and there seemed to be a "shadow" on another lobe. There are also now 2 mediastinal nodes showing signs of involvement (this all at April 2018 so who knows by now). However I have had no bone lesions - just the meds have left me with osteoporosis! Not Amused as I don't know if the medical aid will pay for the annual infusions - still waiting to hear but it is the end of the year so maybe I will have to bite the bullet and go up a plan to cover that. I just have a problem with a clown on the end of a phone line who blithely tells me that I am "on a very good scheme, you know. You do get free maternity" - hello I am 74 and had a hysterectomy years ago - ha ha ha. Things in South Africa can be a bit different but the sense of humour must come out or we will all go under.
Thanks for the good wishes and all the best to you
Izzy
You ARE too young to get this dreadful disease! You deserve a second opinion. U Penn and Fox Chase have good reputations. I just want to add whether you've ever considered using local procedures to treat the liver mets, along with your systemic therapy. That would be a wedge resection (surgery), radiation, or interventional radiology (IR, minimally invasive). I did surgery for a lung met in 2007 and then IR (RFA) in the same area of the lung again in 2008, and have not had any problem in the lung since (the cancer also spread to my brain in 2008, when I had a craniotomy and targeted radiation). I suggest checking out local procedures since you seem to have minimal metastatic spread (oligometastasis).
The problem with local procedures is that they are not standard of care for MBC, and therefore oncologists often don't (and refuse to) consider them. However, there are ways around that, and if you would like additional info, please contact me here, because I know of a doctor not far from home that you can speak with.
Recently, an interim report of a clinical trial at U Chicago showed that patients treated with local procedures did well.
medicalxpress.com/news/2018...
The lead principal investigator of this study, Stephen Chmura, has also been conducting a clinical trial for only MBC patients. You may want to get a second an opinion from him. I have been following Dr. Chmura's trials.
You can also get a second opinion from Stephen Solomon at MSK in NYC. Here's a 6-minute video he produced about IR procedures (see the video at the bottom of his bio page, Leading Edge ...):
mskcc.org/cancer-care/docto...
Best,
Joan
Thank you for the info. I do also have bone mets. I am on my way to Fox Chase now, so I will see what they are suggesting. At my age I would rather go radical w/ treatment.
If your bone mets are stable you may be able to do local procedures, especially if you have a limited number of liver mets.
Ask at Fox Chase about local treatments such as radiation and interventional radiology, and mention that you know about Dr. Chmura's trials on stereotactic body radio surgery (SBRT) and surgery at U Chicago.
IR procedures are:
Radiofrequency ablation (RFA). Burning the tumors with radiorequency waves.
Cryoablation: Freezing the tumor by encapsulating it in an ice ball.
Microwave ablation: No explanation needed.
Nanoelectroparical ablation: Basically, electrocuting the tumor.
Good luck at Fox Chase!
Best,
Joan
I'd like a sample of all please! Thank you Joan for the great info. Let's hope the dr's are as motivated.
My mom was diagnosed with metastatic BC when she was 42. Had a lumpectomy with radiation an took Tamoxifen for 20 years. Bloodwork and bone scans every year. At age 74 she had a bone scan that showed the ca was in her spine and ribs but it was not reported to her. At age 75 she started having neck pain and dr diagnosed mets to her spine, ribs, liver and lungs. More rounds of chemo and radiation. She is 80 now and has stopped treatment because her blood counts are low. But she keeps a positive outlook and never gives up! So my advice to you is find a dr you trust and stay positive. Never give up!!! And trust God for strength to endure. Praying for you!
Thank you for taking the time to share your mom's story & for the encouragement. I wish her only the best.
Hi how are you doing now? I’m 42 with young children too. I’m struggling. Just wondered if you were coping any better? X
Hello, thanks for contacting me. I am not coping any better. I was put on Xeloda in Nov-Feb. Didn't work. Liver got worse and now have reactive ln in abdo. 2/27 started IV chemo Cytoxin & Adriamycin. 1st dose damn near killed me for 15 days. 2nd dose last wk was cut. No ill effects thus far. The only good news is that liver enzymes have gone down and I am not living on Ibuprofen for the bone pain. Foundation testing confirmed I have the ESR1 mutation w/ makes me resisitant to hormone therapy. Ideally 2 more rounds of this chemo, then do another scan. Take care.
Hello how are you doing after your IV Chemo? You had liver mets and like you I have bone and liver mets and next treatment will be taxotere? Please share your experience with me, thanks
What are your treatments?
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