Bone Mets Thread
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I was just told that I have stage 4 Mastectic Cancer, I initially had breast cancer in 2013, I underwent a double Masectomy with a tram flap procedure. I had Chemo from June-December 2013 & Radiation in 2014 going for 6 weeks. I was just approaching my 3rd year of being cancer free, I was so excited. I went to my Onocologist in February, and she said "Let's do a cat scan" so...I did. Results came back 3 days latter showing I have enlarged lymph node with a mass, my Onocologist, then sent me to have a bronoscopy to have the mass biopsied, it came back showing that I had cancer. I then went to my Onocoligist, she then wanted for me to have a Pet scan. This is also the point in which I find out that I am Type 2 Diabetic, double blow...So until I got my sugar down below 200, I wouldn't be able to have the pet scan. So now I have to wait another week or so. Worried about my cancer & Diabetes & where else in my body my cancer has spread. I finally got it below 200, It went down to 114...My primary put me on medicine to help lower my sugar. It did, now I am ready for the pet scan. Monday couldn't come fast enough for me. Wednesday My Onocologist called me into her office to tell me the results of my pet scan, my husband & I were so worried. My Onocoligist walks in and says immediately, "You have Mastectic Breast Cancer"., I was floored, what do you mean? She said " you have the same kind of cancer you had 3 years ago, we must have missed a lymphnode, it has spread into my chest, lungs, abdominal walls, pancreas, & liver...You have stage 4 Cancer". It is uncurable, I can give you some medication if you would like, one is for Quality of life or you take take this other one which would give you Quantity. My husband & I were shell shocked. I asked why was I taking that pill then for the last 3 years, the one you said would keep the cancer at Bay...Anastrozole 1mg? She the. Replied " It must have not been strong enough for you". Needless to say, I fired her...I have my 1st appointment with a new Onocoligist at the Karmanos Institute, next Thursday the 7th of April. I am hoping that he can give me some answers, if not, I don't know who to turn to, I feel so lost & alone. If any of you can give me a light at the end of this tunnel, It would be so ever greatly appreciated0
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jmeissner, I am so sorry to hear that you have stage IV bc. I know how shocked and confused you must feel. You did everything right, and this is not what you expected. No one deserves this horrible disease, but many people live for many years with treatment. I am glad you decided to see a new onco. It is very important for you to be treated by an onc you can trust and feel comfortable with. It is also a good idea to get a second opinion. You need to take time to listen to all the options that are available to you so you can work with your onc to make the decision for the treatment that is best for you. Take a list of questions to your appointment. Ask your husband to take notes. Don't worry about how much time you take with the dcotor. It is all about you and all about getting the best treatments for your situation. As I already said, there are many people living for many years with stage IV bc.
There are many wonderful support women on this Bone Mets Thread, and I am sure many will join in to help you, but since you have mets to other areas, you might want to start a new thread, still in the stage IV forum, so a wider selection of people can jump in and help.
Once you have all the information you need and have a treatment plan in place, believe it or not, you will begin to feel a little better about things. Please post any other questions or concerns you have. We will all be here to help and support you.
Let us know how your appointment goes on Thursday, but don't wait that long to post here. We are concerned about you.
Sending hugs and prayers to you. I will be there in spirit on Thursday, holding your hand
Lynne
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jmeissner, One more thing. Bestbird has a very informative booklet she will send to you. If you read her thread called "Just Sent the 1,000th Copy of My MBC Guide!" you will see how to get one. She has worked hard to put lots of information in one place for all of us.
Lynne
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jmeissner, welcome to this group and at the same time sorry you have to join us. We understand like others can't. Sorry you got blindsided, unfortunately, most oncologists do not warn about the possibility of mets to early stages and make them feel "cured" the honest truth is that 30% of early stages patients will go on to become metastatic. Nobody can predict who will and who won't.
Having said that metastatic breast cancer can be controlled and you can live 10, 15, 20 years with treatment. There are many treatments depending on your status. It can be managed as a "chronic disease". Some people however will not respond to treatment that's a sad reality.
Do not listen to statistics, each case is different. We are here to support you in any way we can. You might want to fill in your profile if you haven't done it already and let us know what kind of mbc you have and what treatments you've had. This will allow us to answer any questions you might have. Make your profile "public" so we can see it.
I'm sending you prayers/good vibes and hugs to comfort you during this difficult time.
Aurora
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Chelle, are you reading, but not posting? How are you?
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Jmeis- I am so sorry you are here, but you found the right place for great advice and support.
I am so sorry that your MO was so insensitive- My third opinion at Dana Farber shed a whole new bright light for me and it will for you too. The good news is that you have your diabetes in control as studies have shown that cancer cells thrive on sugar so as much as I can personally , I absolutely do not have any processed sugar, especially high fructose corn sugar etc. You didn't elaborate on what the pet scan showed? Did they compare the pet scan with a cat scan and did she recommend a bone scan too? Did she mention any Tumor Markers to you?
I had lobular BC 18 years ago and it came back in my bones. I had a very poor experience with the first two oncologists I was seeing as they both dropped the ball on what I had. Even after I had the biopsy that confirmed my BC was back, they had a protocol picked out for me that was all wrong. That is where a second opinion really comes in to help you. Actually, as I am writing this... it was my 3rd opinion at Dana Farber in Boston that picked the protocol. My first two oncologists went strictly by a bone biopsy that showed I was no longer ER/PR positive and wanted to do the big guns immediately. Dana Farber was not sold on that and so far they have been right as I am responding well to a treatment that is for ER/PR positive patients even though my biopsy said I was not.
This is so overwhelming when you are first diagnosed stage 4, but so many of us here are doing so well with many years ahead of us.
Keep us posted and if you can plug in some information in your signature it will help some of the guru's here to help you.
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Jmeissner. I'm so sorry you find yourself here. Don't give up hope - people with MBC can live a long life. It will be different that's for sure. You'll have ups and downs on this journey but you'll have all of us to help and support you on the way.
Go to the onc with a list of questions. No question is wrong or silly if it's something that concerns you. Being another set of ears. Hopefully you're going to a dr affiliated with a major cancer center.
Ask questions here - we want to help!
Sending you hugs
Bab
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Jmeissner - I'm sorry for the reasons that bring you here, but a warm welcome to you. BC can be very tricky and some women become metastatic many years after initial diagnosis unfortunately. It is a big shock. You are wise to go for a second opinion. I echo all the suggestions others have given above. Starting a new thread would give you a larger audience and more experiences. But we do want you to keep us updated. I'll bet it's a long wait until Thursday but there are many treatment options out there. We are here for you. This forum has a wealth of information, more than your docs will ever give you. Sending you good vibes and hugs.
Lovesmaltes - I am absolutely thrilled to read your results! So very happy for you and to see you back on this thread!
Annie - incredible how our bodies heal. I was told my pathological fracture from mets on pubic bone would never heal, guess what? It did!
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Jmeissner reading your post I felt it with you again it's such a shock and that little voice in the back of our mind "why me"? It's been ten months for me now my last pet scan lite up like a Christmas tree. However I look now at only the now , now I feel great , I have no pain and can do all the daily stuff I need to. I just started a clinical trial and I stay positive and proactive. I've gone through a couple Oncologists as well. You will get lots of good advice here the woman are so informed and kind. Interesting for me how different countries tackle the treatment of this disease as well. The tears will lessen and you will become stronger for ourselves and our families. Sorry about the type two diabetes I did learn that with diet and excerise this can be reversed have had people I know do this so that is hopeful. Hope is the key word find it where ever you can, science is moving so fast they will find a cure and better treatment.
I think I cried non stop for the first two months now I think okay somehow I needed that but what a huge waste of time. So I found the egg timer a good solution . You will be sad set the timer then leave the dark side. I found the documentary by Kris Carr "Crazy sexy cancer very helpful she has been stage four for eleven plus years now and I think she has the right mental attitude on this one. There is lots out there to give us hope. You are not alone big hug from Canada.
Wendy
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Thanks all of you ladies for all the encouraging posts. My wife was diagnosed with extensive bone mets on 29th Feb 2016 after being initially diagnosed with Stage 2B n 2013. She was found to be ER/PR+ and HER2- both times. Her primary onc is at Stanford and 2nd opinion from UC San Francisco (UCSF). Both agreed on Ibrance+Letrozole combo and advised us not to look for trials at this time. We have a 9 year old daughter who does not realize whats happening. She got good results from rads on her spine and pelvis and pain is gone for now. She has started on Letrozole and will start on Ibrance as soon her WBC level rises to a safe level (it dropped due to rads). While she was NED, she was on Tamoxifen. So wondering if Letrozole will actually work for her now. Would love to hearer opinion.
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letmywifelive,
I have been on letrozole for almost two years and on Anastrozole prior to that. I also had rads to my bone met, not for pain relief but to kill the darn thing off. It worked and I have been NED for almost 5 years. I live in your neck of the woods. Stanford is where I get my second opinions and Kaiser Santa Clara is where I get my primary care.
I'll be thinking good thoughts for your wife.0 -
exbrnxgrl, you helped so much to raise my hopes. What a dreaded disease we are dealing with here. It destroys perfectly healthy families and otherwise happy lives. Did you have a lot of mets on your bone or just a few spots ?
Also my fear is that since Tamoxifen failed for her, whether Letrozole will work for her. Both seem to be similar but I could be wrong there.
She is only 40 so not naturally menopausal. After her stage IV diagnosis, they gave her Lupron shots to induce menopause.
Lots of good wishes for you and many decades of NED ahead.
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Good evening/morning ladies. I was having a hard time sleeping, so I figured I'd hop on and see if anyone can offer some advice. My left femur had several small mets. Didn't get how many from my MO, but he offered rads to treat. I have no pain, barely an ache at night and take no pain meds so far. Should I get rads done now to stop this, or wait until I have more symptoms? I already got 1 Xgeva injection, am on my second week of Ibrance, and changed to Letrazole 3 weeks ago. I could kick myself in the butt for not getting a copy of the radiology reports, but I do recall seeing the words risk for pathogenic fracture in the CT interpretation. My standard x-Ray showed no fractures yet. TIA
Debie
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Hello all!
Welcome to all the new people here, I'm truly sorry that you find yourself here, but there is a good group here who share the highs & lows of bone mets.
I enjoyed all of Babs pics of her vacation, lovely.
I can't seem to find the time to get caught up, I don't know where the time is flying to. We are leaving again for a few days, heading up to a place called Osoyoos in the Okanagan. The temps this week are supposed to be close to high 70s, possibly 80, so we decided to go. Perhaps being away from the garden work will give me some much needed down time to get caught up.
Stay well everyone, cheers, Dee
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Debie,
I had one met to my upper femur and like you, no pain.My mo and ro felt that rads to render the met necrotic was the way to go. I am almost at the five year mark, with no further progression. Currently on letrozole. I also did two years of an older bone strengthener, Aredia. I can't say which way you should go, but my thinking was (with respect to rads) why not kill the bugger off? It seems a very reasonable and well tolerated option, especially for limited bone mets. Please let me know if you have any questions.
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letmywifelive - tamoxifen and letrozole work differently. It is standard to switch from one to the other. There is also a thread for Ibrance + letrozole which has lots of info. I've been on Letrozole for about 2 years and it's keeping stable with minimal SEs.
Debie - if there is a risk of femur fracture, you should seriously discuss having rads to consolidate the bone.
Dee - Have a good trip!
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thanks for the response. I've decided to go full-throttle and radiate the femur. I hope to have a good response like you.
De
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You're welcome, De. I don't know how many sessions you'll be having (I had 15), but I was scrupulous about skin care and had no issues. Good luck
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Hi Deb,
Just want to send my good wishes and luck with successful rounds of radiation. I had 10 rads to my pelvis over Thanksgiving last year with very little skin issues. I think you are making a good decision.
Take Care,
Amy
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Hi all
I continue to read but don't have the brain power to respond to everyone. I do hold you all in my heart. Thank you all for the kind words in response to my mother's death. These kind words have been a ray of light in the darkness.
Peace to everyone
Mary
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Welcome to the new posters! I am behind in reading after a busy weekend, so won't be able to address everyone at the moment.
jmeissner, I'm sorry about your re-dx, but I can't tell you how relieved I am that you're going for a second opinion. Your original onc sounds like a real jerk (sorry to be so blunt) -- not only with a shocking "bedside" manner, but full of misinformation. If it eases your mind, having a recurrence does NOT mean a lymph node was missed. It means either they didn't do a PET scan earlier (did they?), thus missed it then (which I suspect) ... OR that some very aggressive cells escaped tx -- either via your lymph system or your bloodstream -- and were able to evade whatever med you were on the past 3 years, which could have happened for any number of reasons. Sorry, but you deserve valid information, including the fact that many women are able to live with mbc for many years -- hopefully within which time there will be more and better txs to extent that time even longer. Please let us know how your second opinion appt. goes. You are absolutely doing the right thing by looking beyond onc #1's horrible, depressing approach.
Annie, great news on your bone healing!!! I'm so happy to hear that! How're you feeling?
letmywifelive, Caryn gave you excellent advice about Tamox vs. Letrozole. Your wife is very fortunate to be treated at Stanford, with advice from UCSF also in the mix. Letrozole+Ibrance is a very powerful combination. There's no reason to believe she won't respond extremely well to it. Is your wife also on BCO?
Sorry if I've missed anyone -- especially anyone new or returning after a hiatus! Patty, how're you doing this week?
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Thanks Amy! When I go back on the 21st, I'm telling my MO I want rads
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Did anyone here have good experience with tamoxafin in getting to stable? Was there anything else you were doing at the sametime?
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Deb, I had two spots in my left femur that were let go do to neglect from MO- By the time my stage4 was diagnosed by biopsy I could hardly walk. I was all set to get rads when RO said it was impossible to do because my bone was to weak and would fracture. So I had to have a rod put in to stabilize . Fast forward from Nov 2015 to now... I had rod put in immediately and then 10 radiation treatments. Bone is all healed and I am doing wonderful. There was no SE from the rads regarding the femur area. Glad you are going to have it done and to make a note, the spots that I did have rads too are all showing calcium now! Which means nicely healing with new bone!!
Carol
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I just returned from my MO visit. I am so glad I decided to stick with him even though I have to see him in a different location. He asked for a detailed update about my DH, which I thought was very nice. I asked how long, on average, people with MBC are able to stay on Arimidex before having it fail. He said that it is difficult to talk averages, but he has some stage IV patients who have been on it four 7 or 8 years. He added that I am doing well on it and It is possible that could be on it that long , too. That is one reason I like him. He shares my hope and optimism but keeps me aware of realities, too. Unfortunately, I had to educate the infusion nurse since she was going to give me a 15 minute infusion of Zometa. Thank goodness I asked for details before she started. I really liked my infusion nurse at the cancer center. Oh well, onc is more important. I am anxious to see the what my TMs are, but those results will take a few days.
It's snowy and cold here today. It's hard to believe that it was sunny and 70 degrees a few days ago.
Lynne
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Lynne I hope you can stay on it longer than 8 years! It is so nice when you like your oncologist. Glad you asked about your infusion and got that changed to 30 minutes ! We are freezing here too with snow on the ground and it was 70° here a few days ago as well WTH?
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yeah Lynne that's great news eight years seems like an eternity to me now. Let hope for ten or fifteen.
Jen I was on tamoxifen for nine months my tumour was shrinking so we figured it was working. Fast forward to my pet scan of January and there was quit a bit of progression on the bones. So I was pretty pissed they had all told me if the tumour is shrinking than its shrinking everywhere else which wasn't the case. All I can say for you is make sure you are being closely monitored.
Wendy
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Mary my condolences to you. It must have been real hard. So glad you spent the time together. Are you ok?
Wendy so happy to "see" your excitement for your new protocol, good for you.
Dani is coming along, no major complains, waiting for the scheduling hopefully at the end of the wk for Pet/CT, it's been 3 months, and she had 3 cycles of the Ibr/Letr mix. TM's next week. So it's anxiety time.
Jmeissner impossible to understand how some ppl could be so insensitive, did you check for a pulse on the Onco? But you are moving on, which is great news. There is much hope out there. As Dani's Onco told her, a treasure box.
Lynne terrific that you feel comfortable with your decision. For sure it's nice to have a continuation of tx, when possible. And yes, him asking about your family, priceless.
Jen - Deb you know if i understand correctly you kinda were not so sure with the results of the biopsy, what about a blood biopsy, my daughter Dani had it done, they sent it out to Gardand360, just a thought.
Annie so glad for you. How have you been doing?
Deanna you are so on spot always, like a mother hen. I wait to see your posts.
Amy how are you feeling?
Letmywifel i am speechless for what you are going through, but it's definitely great that you found this thread, so damn hard to see your loved one going through Hell. There is so many treatments your wife could be on. It's terrifying yes, I am here for my daughter she is a young mom, she has 2 little girls, the older is just now 9. They don't know either of the situation, it's a challenge, but she keeps it away from them, and aside from her sisters no one else knows of her status. Too much baggage. We try to support my sil a lot, he is a true gift. We'll try to support you here.
I am actually on my knees typing this, let's just say I messed up my back, I stretched to get something 2 days ago, in a way that I should not have had, and I am paying for it. I have a muscle relaxant, was laying in bed yesterday, and much better today. but sitting is another issue.
Everyone warm hugs, there are so many ladies that we did not hear for awhile, miss you all.
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Hi Everyone, Wendy, I'm wondering about getting my ovaries taken out? Has that been mentioned to you since you have had progression on Tamoxifen? Just curious. Momallthetime, I hope your back feels better. Hello to everyone else. I'm like 5 pages behind. Oh, and Praline is beautiful. Hope everyone is doing OK and hugs to y'all.
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Thanks much for your kind words. I can understand what you are going through too with your daughter being affected by this dreaded disease. I have faith in modern medicine to come out with better treatment very rapidly. Lots of scientific research going on. Hopefully all that research will have corresponding clinical implications soon.
Sorry to hear about your back and good to hear that its healing. I have seen warm patches do help in comforting back pains a lot.
This is a wonderful forum full of hope. We are all fighting the same battle. Either for ourselves or for our loved ones.
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