Metastasis to bones, so scared.
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Maureen, I get Zometa once a month and I get crazy bone pain for up to a week afterwards.0 -
ouch! I just finished up two years of Aredia. No bone pain but some flu like symptoms, especially if they tried to run the infusion too fast.0 -
I still can't wrap my head around this. How do you come to terms with all of this?
I want to see my children get married probably won't happen. I want to enjoy grand babies. Probably won't happen. I wanted to retire with my dh and have the happily ever after sorry about the rant I'm just really down right now0 -
ps how much calcium and vitamin d do you take?0 -
Maureen,
This is a very difficult thing to deal with, in the beginning. It may be hard to fathom now, but it does get easier. I try not to give advice because we all experience this in our own way, however, one thing I figured out very early in my journey was that ultimately bc would cut my life short and I would probably have little control over that ( beyond doing tx and trying to be healthy). What I did have control over was how I was going to live my life within the parameters of bc.I wasn't going to let bc steal who I was as a person. I wasn't going to let bc steal (too many) of whatever good days I have. In other words, I decided to keep living my life as I wanted until such time as I can't. I know that time will come but I'm not giving in any sooner than I have to. And, yes, I have taken Effexor almost from the beginning and have no plans to stop! I do have moments of sadness and I'm under no illusions about where this will end up but I will not let it rob me of today. I hope you can get to this point, many of us do, and know that you may have many good years ahead of you. Take good care of yourself.
PS: my trip to NZ/AUS was planned a few months after my dx. It was scary to think about planning so far ahead, yet here it is just a few weeks away. We must continue to live, until we can't.0 -
have a wonderful time. I know many people through work who live there and they love ot0 -
Maureen, no!!! I am so sorry to hear this news. This is just another way for us to stay connected!! When did you find out? As everyone has said, it does get easier. November 7 was one year since stage IV diagnosis. I am still working and most days are good. It is really, really hard in the beginning.
My thoughts and prayers are with you!0 -
just found out last thurs. Happy thanksgiving friend. I miss our chemo talks and here we are again.0 -
Hi everyone, I'm new to this site and thank God I found you! Two days ago I found out I now have a stage IV 5 mm tumor in my right hip, "stuff" in my pelvis and spine; after being in remission for 7 years (initial diagnosis stage III B breast cancer), I am devastated. Believe you me, after reading all these great posts, my hopes are high. I will be getting a second opinion on 01/21/14 from another oncologist and will also be meeting w/ radiation oncologist. My youngest child is 13 years old and am petrified because I can't imagine leaving him at such a young age; initially, I thought this was the end for me but your posts have inspired me to keep fighting because the end may not be a near as I thought it was 2 days ago!!
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Beejudy, I know it's crazy when you first hear those words, bone cancer. I was re-diagnosed in the spring, and after the initial shock wore of, I must say life has gone back to a new kind of normal. Where I use to take tamoxefin I now take Famera. I get monthly pamidronate IV treatments to build my bones. I am on a clinical trial and I get regular scans and all looks good. So other than a few more trips to the hospital now, life carries on. I too figure with all the wonderful treatments out there, I could live a long long life. I am only 47 and have two young kids to live for.
Michele
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beejudy,
Yes, hearing that you have mets is quite a shock. One tiny correction to what michelleboots wrote; We do not have bone cancer. We still have breast cancer but it has spread to our bones. Bone cancer is a different animal. Though no one can predict the future, in all likelihood, the end is not near. I am 2 1/2 years out from my bone mets dx and lead an (almost) normal life. I work full time, travel, enjoy my family, have seen my youngest dd married and become a grandmother. I have been NED on Arimidex and Pamidronate (16 infusions over 2 years. Stopped in Oct. 2013). I made a decision early on to do what needed to be done, medically, and just keep living until such time as I can't. Yes, I think about this disease and my dx every day but I don't let it stop me from living, enjoying and planning for the future. Wishing you the best.
Caryn
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Yes you are right, mets it is....
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Beejudy, one year out from bone mets I live a normal life. Well except for the trips to the cancer center one morning a month and the fact that I don't remember things as well anymore (side effects of Femara and Faslodex). But I work full time, and go on vacations (the beach in three weeks but who's counting), and basically everything is normal.
Last scan said there was no active disease.
My first visit after the diagnosis my onc told me not to give my stuff away. He was right.
Someday things will get worse, but that day could be many years down the road for me and for you.
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Feel like this is the best place for this question. Originally diagnosed with BC six years ago. Happy with the treatment I received until the last couple of years. Was diagnosed with bone mets last week. I'm angry. Angry for the obvious reasons and angry when I think back to the follow up appts from the last couple of years. I was followed every 3 months, never had many scans, but they always did blood work. Then , eventually, the blood work stopped, the span of visits increased to every 6 months. I knew the frequency of visits would change, but I always assumed I would get blood work. A couple of times I requested a scan. I would have an ache or pain & ask to be sure, and would even resort to asking further "just for my peace of mind". The answers were basically the same: based on my type of cancer, the standard blah, blah, blah. Bottom line, blood work didn't resume & I didn't get scans (other than a couple of times because I embellished the symptoms of the problem I was having, I hate to admit). Anyway, now here I am. My dilemma? Do I stay where I am & move forward with treatment or go somewhere else? I must admit my trust is somewhat jaded. I'm very glad for the treatment I received initially, but I'm very upset my concerns were not taken more seriously because of "the standard" and nothing changed. I can't help but wonder if my bone mets would have been found earlier had they agreed to check me when I asked even if I didn't have OBVIOUS symptoms. I know he's human & can't predict the future. I know insurance controls a lot of what happens. I knew mets were a possibility because of my previous journey. I just can't get past the fact that my follow-up seems to be based more on "the standard" not what I, the patient, needed. I know there are crazies out there who would find a reason for a scan every day of every week if doctors agreed every time it came up. I understand all of that. But, how do I move forward with the same amount of trust? I don't doubt his plan of action, I'm just afraid I will be poo-poo'd off again & end up with mets in my organs. Then what do I do??? The other side of the dilemma is do I risk going somewhere else (MD Anderson-TX, Emory-GA, etc.) to doctors I don't know, and trust them this late in the game when I know nothing about them? And, on top of that, delay my treatment (which could start tomorrow with my current Onc) by a few weeks so the new Onc can get on board with where I've been & where I am. Anyone have anything to help me work through this? My family doesn't want me to stay with the current Onc at all. No other reason than what I listed above. They do not feel I was monitored closely enough. In fact, "the standard" is now a four-letter word. How do I know the new doctors won't just follow "the standard" my current Onc follows & the only thing that changes is where I go & who I see? Every day I spend worrying about this puts me that much further from starting treatment, yet I don't know what to do & I'm so afraid of falling through the cracks again. Sure could use some feedback. Thanks...
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Hi there, I am so sorry for your new diagnosis. I have to be honest, while I am not the stage you are; I would go seek alternate opinions and interview new oncologists. Nothing says you must stay with them; but interview them, see what they have to say, ask how they will manage you. Any cancer patient must have their concerns considered and taken seriously and with your new diagnosis I'd think you may want someone who seems more in your court and willing to sort out and find the reason for pains and symptoms not brush them aside.
Good luck to you and there is a stage 4 forum where many women just like you can give you good input.
B
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Thank you for responding, bevin. After an absolutely exhausting week of emotions, news, appts, suggestions, concerns, facts, my head finally stopped spinning last night. I NEVER felt this out of control & freaked out during my first journey with BC. I had days when the emotions would take over, but since Jan 11th I've been an absolute nut case, bouncing like a ping pong ball from one wall to another. To feel somewhat grounded again is such a blessing. Thank you to those who have responded on this & the Bone Mets thread. Like I mentioned before, these boards were a tremendous source of encouragement, strength, information, understanding, etc., during my first trip, I'm staying tuned for more now that my trip is for a lifetime!!
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Firelady, I would stick with my currant onc, for now. Get the treatment ball rolling and when you have had more time to breath and think things through then consider changing oncs. Like you said if you wait to see another onc things will be delayed even more. The first few weeks after being re-diagnosed is like a roller coaster and sometimes you just need a little time to relax, accept you are not dying tomorrow, and make your plan. My bet is that things will get done faster and they will keep a close eye on you.
MIchele
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Firelady,
When I got a second opinion, the onc knew I was in a panic to start tx right away so within a week of meeting him he got the ball rolling and I was on tx. So it might not take as long as you think depending on when you can initially sit down with them, that's the problem. Sometimes there is a long wait for the first appt. I would make the phone calls and see what the wait time is and then decide what you want to do. This way when you look back you won't have any regrets and I think if you start treatment with your current onc it might be more difficult to switch, not impossible just more difficult. You can ask that question when you make the phone calls too. Say MD Anderson for instance says that they can't get you in for 3 weeks or so, ask them what happens if you start tx with current onc. Best of luck!
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I was diagnosed a year ago with breast cancer had a double mystectomy now was just told I have extensive bone mets.. I was terrible at taking my temoxafen and am having extreme guilt that I did this to myself but part of me feels this had to be here before I was just never scanned.. anyone been diagnosed with bone mets even with taking temoxafen religiously?? I'm scared to death!!
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Hi Tracey..
I was just diagnosed to bone mets also...I took my tamoxifen religiously and it still occurred...it just didn't work for me and most likely your case too. I have been researching these blogs and you too will see there is life after mets. I will pray for you and all of us battling metastatic BC tonight...I will pray for peace and strength to do the work.
Take car
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Tracey,
This thread has been dormant for over three years. Please go to the stage IV forum and find the bone mets thread:
https://community.breastcancer.org/forum/8/topics/...
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Cancer is a word not a sentence
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Leah how are you doing I’m newly diagnosed and I just had a grand baby my firet
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Chrissy I have stage 3 breast cancer HER 2 neg. I did 6 months of chemo then s lumpotomy it was 7 cm. They took out 4 nodes sample 3 where positive. I as schedules for more surgery when my onocologist ordered chest abdomen and pelvis scan. He called me in to tell me there where spots on my spine suspicious. Could be cancer or maybe from the chemo? So he ordered more tests MRI and bone scan I did today my question is if it’s bone cancer They plan on treating it first what about the breast cancer to remove more nodes and masectomy. Is this protacal
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how are you doing I was just diagnosed
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Eddy, Sorry you are facing this. Have you gotten the results? Depending on the results, they will figure out surgery, radiation, ongoing therapy, etc. keep us posted
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Tracey I hate to say it but I was also terrible at taking the tamoxifen. I also did the blame game but I have noticed through these threads that women who have been on tamoxifen have developed stage 4 as well. I know that we should never compare ourselves to others but it did make me feel a little better. I still have times when i wonder if I could have changed things if I had stayed on it.
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I was on Tamoxifen, I was really good about taking it, never missed a day, didn't help me, I was diagnosed stage IV on Halloween last year, so really don't go what if, because in my opinion, it's just like a reverse lottery, no matter what you do, and 6 tried to do everything right exercising, eating only fresh homemade food, oh well, it is what it is.
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