Hormonal Treatment for Stage IV
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Hi, im posting this on behalf of my mom. She was diagnosed with stage 4 breast cancer with bone mets 2 days ago. Despite annual mammogram scans, she was still diagnosed at such an advanced stage. She is coping fine and staying very positive, both me and my younger sister we are trying very hard to stay positive also. We are meeting the medical oncologist again on Monday to discuss about treatment options.
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Welcome QiXian_Ho. So sorry to hear about your mom. It's really hard to hear a Stage IV diagnosis, but it's becoming more and more of a manageable disease - there are some long term survivors on these boards.
You may also want to check out the bone mets thread, which has some really knowledgeable people with regard to bone mets. And various types of treatments.
Sending you and your family hugs,
Terre
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Hi QiXian_Ho and welcome. I was diagnosed with bone mets six years ago and have been having hormonal treatment all that time with great success.
I know its hard to hear the words that the cancer has progressed to stage IV but take heart, with treatment it is very possible to live a long time yet with great quality of life.
Love n hugs. Chrissy
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QiXian_Ho, I am glad you found this forum and am sorry to hear about your mother.
If it’s possible, have the met(s) biopsied to see what their estrogen (ER), Progesterone (PR) and HER2 status are. If the cancer is ER+ and/or PR+, then the oncologist should be considering hormonal treatment, and if it's HER2+ then Herceptin and
Perjeta may be considered along with a Taxane. Additionally, you may want to request testing to see whether the tumor has Androgen Receptors (AR), since there are some promising clinical trials that target Androgen Receptors
in a similar manner as current hormonal therapy targets Estrogen Receptors (ER).Even if you the cancer is hormone receptor negative (ER- and PR-) you may still consider hormonal therapy
according to the latest (2014) National Comprehensive Cancer Network (NCCN) Guidelines, “Patients may be candidates for hormonal therapy irrespective of their hormone receptivity status, provided that their cancer is in the bones,
soft tissue (muscle, fat or nerves), or internal organs and is not causing symptoms. The reason for suggesting hormonal therapy is because sometimes the metastasis is indeed hormone receptor positive and the actual test results
are incorrect. (This represents a major shift in thinking regarding potential therapies for TNBC and hormone receptor negative patients). From: http://www.nccn.org/patients/guidelines/stage_iv_breast/index.html#33/zThis is very important: Please remember to keep copies of all tests results and scans in case there eventually is a need or desire to have a second opinion from a specialist outside your medical network.
You may also want to have your mother seek a second opinion at any point about treatment.
Please post if you have questions, and wishing your mother a great outcome0 -
- I was just dx 6 months ago, my bc is back stage 4 mets to my bones, I am on hormone therapy and 3 hour calcium drip one a month, I just finished 10 days of radiation for a tumor on my shoulder, I am in constant pain & I want to read about others who can relate, I am scared not knowing what lies ahead for me besides pain, my life as I knew it is gone, I. Am having to learn new ways yo do things with the pain due to tumors on my spine, its so very hard for me, im not a happy happy cancer patient at this time, I do pray alot & cry alot, not knowing how long is the hardest part. I try not to ask why cause I will never know but I do ask when im overwhelmed. i do try to keep my mind busy that helps,& having visitors helps me too. Prayers for us all.
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Bk it is norma to feel overwhelmed at the beginning after a while things get a little bit better you may want to come over to some of the other threads there's one for bone mets and for different types of anti hormonals treatment. Sending you hugs and comfort.
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Hi Bk. Yes, the early days of stage IV are the hardest days to get through. We have all been where you are standing right now and saw nothing but darkness ahead as you are doing. I can tell you that for many of us, once the pain is controlled and we learn to make small changes in our day to day routine, life can and does return to something almost normal. Yes there are good days just as there are bad but it's what we make of those days that makes the difference.
Takling about how you feel and think to others as well as learning as much as possible about your disease will make things easier to deal with. There are many threads on this site that will help you do just that.
Love n hugs. Chrissy
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Hi Bk4suks, and welcome! So sorry to hear about all you are going through, but hoping that the support and encouragement you find here will help a ton. We're all here for you!
Hugs,
The Mods
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Bk, I'm new to the stage 4 diagnosis too, it's very overwhelming! I still have bad days, my hope is this will improve once I get back to work next month. I just saw a psychiatrist to help manage my anxiety and depression medically along with counseling. Please know you are not alone here, there are so many inspirational women on this board that help me every day!
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BK - a warm welcome to you. What lies ahead of you is not constant pain. You are overwhelmed right now and it's understandable. I was in such pain at time of dx because of multiple bone mets, I never thought I would have a normal life again. It is a "new normal", but now 21 months later, I can live an active life and feel much better than prior my dx. I had radiation to several areas for pain relief and have adequate pain meds that I take daily. I'm on hormone therapy with monthly bone strengthener. Do not stay in pain, ask your doc for pain meds - life is much better when pain is controlled. Come and visit us on the bone mets thread if you wish. You will find a lot of support and info there. Wishing you the very best. Keep us posted. Sending hugs.
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Thanks LindaE54
It's post like yours that keep my head above water. Thanks
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Welcome to all the new ladies here, I'm sorry you're here, but we all help each other through the good times & especially the bad. I've been where you are, the not knowing is the worst.
I'm 16 months out & feel great. I had rads to some very sore spots on my spine, sacrum, ribs & arm. Last ones about 3-4 weeks ago & it's amazing the difference. I take anastrozole with only mild hot flashes which I take some gabapentin for & I have a bisphophonate infusion every 4 weeks through a port. My tumour markers were very high last May & have come down to normal. It's taken a while to get here & trust me it's hard. But tell your Dr's every little thing that's bothering you, they know which is worrying & which isn't. If you're in pain, make them very aware of it. Like Linda says, there's lots of support here & never hesitate to post your feelings that you can't share anywhere else. We understand, we've been there... best wishes, Cheers, Dee
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gg27 thanks your post helped me this morning. Had a rough morning found blood in my stool and had a total meltdown. Phoned the nurses line and she figures it may be hemmoriods ...of course in my mind it wouldn't be anything as wonderful as hemmoriods could it...
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Wendy, yes, we've all been there, everything must now be mets!
"Wonderful hemorrhriods" that's the way, find some humour in it all, somehow..... hugs Dee0 -
Deethanks for replying my family slowly doesn't know how to deal with this stuff. Your on Vancouver island that's so cool eh? I'm in Vancouver had to move here for treatment because they messed things up so bad in the interior. Enjoy the sun and big hugs back at you Dee
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Wendy - it's going to be o.k. - I had an intestinal bleed in the middle of the night last year and I was in panic mode I can tell you - rushed into Emerg by ambulance at 4 a.m. - first thing the dr. said to me was "don't worry - pretty sure this isn't anything related to BC" and he was right - it was a tiny tear in my colon probably caused by years of low dose aspirin therapy (I have Afib) told me to add MORE fibre to my diet - I am already the fibre queen! Let us know how you make out. S.
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Just got diagnosed with a spot of bc mets in my lungs. This will be my fourth go round but this is the first time I have told I am stage IV. My question is about ibrance. My onc is waiting on some biopsy report, but she is thinking of Femara (I have been on that before) along with the new drug ibrance. I am very well acquainted with Femara, but looking up ibrance I am a little leery of that. I am thinking that since I only have one spot (only 1.3cm and maybe another one starting but it is even smaller) that maybe I could just restart the Femara and see if that works alone. I am not sure how to search the forum for previous posts on ibrance so please forgive me if I am repeating. Thank you.
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arbojenn,
Here is a link to the Ibrance thread: https://community.breastcancer.org/forum/8/topics/828848?page=115#idx_3433
It's called Ibrance 2015. It is a very active thread. Lots of good information.
You also should join the Lung Mets thread which has recently become active again. PM me if that link doesn't work.
Hugs, Susan
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Thank you so much!
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Arbojen, I am a new member if this goup having been very recently diagnosed with bc mets to my liver. I am BRCA2 positive and had initial bc treatment for stage IIb ER+, HER- with lymph node involvement. Had bilateral mastectomies, chemo, radiation 5 years ago. Doc is keeping me on Aromasin and adding Ibrance and Faslodex. Everything I am reading makes me optimistic that this combo will help me. Am hoping to see more conversation about this as I am interested in others' experiences.
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Hi Ihatelimabeans! Sorry you needed to find BCO but glad you did, welcome. It's really quite a difficult thing to hear firstly that you have BC but even worse when you hear that it is back. It's going to take a little time to get your head around it but in the mean time, just know that it will get better as time passes and you get good results from your treatment.
The hormonals are really quite powerful and there are many on the same combination as yourself who have had great success. I'm just on Femara but have been NED (no evidence of active disease) for five years and going strong.
Read through the threads, it will take a while but there is so much information on this site worth learning.
Love n hugs. Chrissy
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IHateLimabeans, You should check out the Faslodex with Ibrance thread! Immensely helpful info.
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I am a 41 year old diagnosed at the end of Decenber 2015 with Stage 4 IDC with mets to bone. I found a lump and two weeks later got the terminal diagnosis. I am an ICU RN of 15 years and a ️nurse for 20, knowing medicine and diagnosis and stastics is torture for me!!!!! I have a 15 year old son and my husband smd I are trying to keep things as normal as possible for him . The hardest thing about thos diagnosis is the emotional roller coaster ride!!!! I go next Friday for my 1st PET Scan since diagnosis..😬😬😬😬....My bone mets did not show up on bones scan only on the PET Scan. EVERYTIME I read my diagnosis I think this is MY diagnosis NOT one of my patients but MINE!!!!! I try to keep a smile, a positive attitude but I have felt so depressed the last couple of weeks..... Wondering if there are any survivors with stage 4 longer than a couple of years?????
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Cstodart RN,
Yes, I am almost five years out from by MBC diagnosis. After stariting tx, rads to my bone met and an AI, I have been NED ever since and lead a, mostly, normal life. Wishing you the best.
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CstodarRN -
I was diagnosed with ER+PR+ breast cancer with metastasis to the liver and possibly the sternum in January, so we're on the same emotional timeline. After having a total freak I out I learned that many people live with stage IV a long time. I learned that cancer is a systemic and complex disease and so it matters a lot how you treat your whole body (sleep, diet and exercise), and how you manage your treatment. Also, treatment options are growing. As a nurse, you can position yourself to succeed. I think if we have half the fight in us as the rest of the people on this site, we'll be here a long time.
Don't worry. Stay focused and fight fight fight.
>KNC<
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Hi CstodarRN, I'm seven years out with bone mets. Started on Arimadex had small progression so was changed to Femara at 15 months. I have been NED for five years.........hang in there, long term survival is becoming the norm not the exception.
It takes a while to get your head around everything but by taking things as they come, one day at a time life can resume a fairly normal routine and feel. Goodluck with everything.
Love n hugs. Chrissy
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CstodartRN, While I'm a relative newby to MBC, only 2 years, I was exactly where you are, wondering if I was done. Other than a few back & hip twinges, I feel normal, no one knows I have MBC unless I tell them & then they don't believe me. I am still on first line treatment, still stable after 2 years.
I am still shoveling soil & gravel, doing heavy duty gardening everyday. Am about to paint the extire exterior of our 2 story house.. again. Life is pretty normal other than labs and an infusion every four weeks, bone scan & tumor markers every three months. It's the new normal. cheers, Dee
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RN, yes, there are a good number of us who've been dealing wth mbc for awhile. I am about 5 1/2 years out now with it and have had a good run of stability. The shock of diagnosis is a difficult phase to go through and definitely a roller coaster of emotions. Many of us benefit from either anti-depressants or anti-anxiety meds.
Once I found an anti-anxiety med that helped, I was able to move forward with life. Now, tho, instead of projecting myself so far into the future, I learned to live life in the here and now. One day can be very full. Then go on to the next day. You would probably be surprised all the living I have packed into my life since being diagnosed from the start with stage iv bc. At some point that first year, I had to dig down deep inside myself and see if I had what it took to deal with this, or if I had to develop something within me to do so. I think it's been a little of both.
Another thing that has helped me is that I phrase it as "Living with this disease, not dying from it." Not only is a psychological switch in looking at and approaching mbc, but, it's true! I am living and loving and have a full life in spite of bc
Certainly, this forum is a life-line to me, to walk along in cyberspace with others dealing with the same issues as me. I hope you will find the support and insight and information you need here.
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Hi everyone! I'm new to the Stage IV dx (March 17th). I was originally diagnosed 2/2014 ILC, 100% ER/PR +, Her2-. The TC chemo I chose to do since I had 3 pos nodes put me in early menopause. I started on Arimidex, but only lasted 4 months due to SE. I started Aromasin and was on it until I was dx with bone mets to T2, T8, S4, and the upper part of my left femur, near the hip socket. I'm now on Femara, Ibrance, get monthly Xgeva injections, and have 2 more radiation tx for my femur. When they did a CT for my radiation mapping, they noted an additional possible lesion at T3 and S5. My MO and BS are both stumped by my diagnosis. Both advised against chemo bc I was 100% sensitive. Now I wonder if I was stage IV 2 years ago. I fear the Femara won't work since both previous AI's failed. I had almost no SE's from Aromasin, but have occasional hot flashes and some joint pain with Femara. Both are tolerable. It makes me think it's working. I guess I'll find out in June when I get scanned again. Thanks for starting this thread.
Deb
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Hi Deb, I've been on Femara for almost six years after failing Arimadex after 15 months. I've been NED for five years now so hopefully Femara will do the same for you.
Hearing stage IV is frightening but we can just keep plodding on and hopefully get many years from all the treatments that are now available.
Love n hugs. Chrissy
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