Metastasis to bones, so scared.
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Marie, I told everyone the first time. This time only my family and close friends know. I don't want people thinking. "oh ya it's back and she is on deaths doorstep" People change towards you when they here your cancer has come back...or perhaps it's just me that changes.
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I was diagnosed in 1996 with ILC--don't know about the nodes because the hospital lost them! I had a recurrence in 2008--negative nodes. I started having mild, intermittent pain in my leg in late 2011. The pain moved around but was always in my right leg. When it got a little worse, my PCP had me get an MRI of my lumbar spine, then a venous scan--all ok. In December of 2012, I was in a lot of pain and having trouble walking. The pain was mostly focused in my hip. My PCP sent me to an orthopedist, who x-rayed my hip and told me he was sure it was a BC metastasis and that the hip was ready to fracture. I had a hip replacement right away. They also found a large lesion in my ilium. I have to admit that I was completely shocked by the diagnosis. I had always been told that bone mets caused severe pain that would wake you up at night. Mine was bad, but only at the end, and never so bad that it woke me up.
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Micheleboots, I feel the same way about telling friends and colleagues - people will automatically assume that with metastasis, I am on death's door step!!I have told only my immediate family.
JO-5, my mets were discovered when I slipped on the stairway and had low back pain. Pain radiated to my upper back and I saw my orthopedic surgeon. He ordered a MRI for the entire spine and mets was discovered in cervical spine. Low back pain was due to herniated disc due to the fall which has resolved by itself. I had positive nodes when I was diagnosed 5 years ago. I don't think there is a correlation between the node status and metastases. There are a lot of women on this board with metastases, even with negative nodes.
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Jo-5 my met (one spot on my upper femur) was just found recently when I had investigative scans after my tumour markers went up.
It was confirmed as BC by biopsy.
My original dx is in my signature line.0 -
Jo ,
I had 3/12 nodes involved back it 2009. I had a bit of pain in my bottom pelvis on my left bum cheek, but deeper.. It feels like a deep bruise. I thought it was just from working out. I had joined a gym over a year ago. So I ignored it for a bit. It would go away and come back. That's why I didn't get to worked up. My onc had said cancer pain doesn't go away and come back. Turns out on me it does. Now my tumor is about 3inches.
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Jo, don't believe them that cancer pain doesn't come and go. Mine did that for almost a year.
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MarieK, The day before I was told about the mets, I had been to a retirement for a lady I worked with six years ago (that was also when I was originally diagnosed ). Most of the people there had not seen me in all these years either. They all hugged on me and told me how great I looked. Asked if I was cancer free.....and of course I said yes! Then the next day......wham.....like a ton of bricks hit me. I almost felt like I had deceived them in some way! I have also only told family and a few close friends. So I think I kind of see where you are coming from :-)
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Nursie3263 - I think you hit the nail on the head with your reply.
A part of me does feel like I've failed or let my family/friends down by having cancer again....
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Life can be so harsh. I am sad to read about relapses but appreciate the sharing. Almost three years since doctor found my lump. I still find myself worried, but less and less over time. Worries make me feel lonely. I come to these discussion boards and feel less alone. I feel a connection. Thank you for sharing.
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Damazon,
No problem sharing knowledge but hearing that someone's "shoulder fell off" is not a great comfort to those of us with bone mets. There is a thread on the stage IV forum for those who are not stage IV but have questions. Your post might be more appropriate there.0 -
Very happy to hear about the 20 year survivor! When I was first dx'd I told everyone. It was good because people didn't avoid me and felt comfortable asking questions and I had amazing support, from meals to a huge box of cards and flower deliveries and PTO donatons. This time I don't really talk about it as much. I'm disappointed and feel..not sure what the right word is...embarrased? Everyone was so happy for me when I was finished with treatment and now here we are again. I'm not secretive about it, just don't want to talk about it much. The flowers freaked me out a little bit. For a while they were really pouring in and I thought, my gosh these people think I'm going to die!
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Hi everyone
Glad to hear I'm not the only one not sharing my dx with all my friends and family. My dh is wonderful and I have shared my worst fears with him and one really close friend who is also going through the same dx. We support each other. I just want some normality and while it is still not obvious I am going to keep it that way.
I have also found great support on these boards. I was dx straight out and there are days I still am in denial. That's when I come here and read.
Mara0 -
Everyone knows I have bc but not everyone knows it's stage IV. If it comes up, I don't hide it but it is a complex thing to understand and not everyone is prepared to truly understand it.
Caryn0 -
I was dx in 2007 (aged 48) IDC, went thru chemo rads and partial mast. just passed the 'MAGICAL' 5 year mark and it is back, with a vengeance, mets to lymph nodes and spine/ribs. I am terrified! Hugs Tash xxx
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Tasha, welcome. Sorry you have to be back here. I was feeling like you not to long ago. It is a lot of stress at first, but once your onc has run all the tests and has made a plan, it will be a little less stress. I know at first I was practically running to my lawyer to update the will, and and shop for funeral homes. I have calmed down and come to realize that there are a ton of treatments out there and many, many people live long and happy lives with bone mets.
You might also want to check out the Canadian ladies thread. It is super active and a wonderful group of ladies.
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Hi...it is a shock to find metastasis after 13 years! I guess you always have that little cell cruising around. Just found mets in spine, chest, pelvis, femur and humerus 3 months ago and been on monthly infusions of zoledronic acid and tamoxifen. And last week a new scan shows some spots in my skull. I thought I was indestructible but am trying to come to terms with the fact of no cure. I have a young doctor friend who is very encouraging and tells me that there are many combos to try, and being just in the bones is good, so take heart all of you! And I agree don't believe all the google sites.
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I had 18 months of on and off pain in my shoulder and right arm. The doc said it wouldn't be mets because the pain would be persistent. Finally saw another doc and asked/ ordered a chest X-ray, and it was immediately obvious there were problems. Bone scans certainly show where the damage is, so insist on one and or any other scans. Most times it might just be non specific.
But once you get the news of mets there is a whole new phase to think through, and it is dealing with the inevitability of no cure. Don't dwell on it, just do lots of fun things, enjoy life, and keep smiling. ,! I am a bit of a Pollyanna which helps.0 -
Jelworthy, what is it with doctors that they keep spreading the myth that pain from bone mets can't be intermittent?! I had intermittent pain for over a year, and didn't even consider mets because it wasn't persistent. I was also told that the pain would be bad enough to wake you up at night. Well...mine never was. You'd think doctors would know better. And you and I aren't alone. Many women on this site had intermittent pain.
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Hi all. Finally joining this forum. I was diagnosed with bone mets in February and went through the terror, etc. It's still there; I'm not sure it ever goes completely away. But I have it pretty well under control most of the time. A friend gave me a bit of advice - when swamped with fear, stop and ask yourself "am I ok right now?" The answer for me is "yes, I'm ok right now". It helps shift my focus from the fear. I'm planning for the worst (estate planning, etc) but hoping for the best. One of the hardest parts is having a pain somewhere and wondering if it's the cancer spreading/getting worse or if it's just old age/arthritis/overdoing it.
As to telling people, I initially told almost no one. I've told more people and it's been a mixed reaction. Quite a few have me on death's door and have written me off. Others are in total denial, and others just accept that we could all die at any time, and so I might as well make the best of the time I have left. I was recently approached by a company wanting to hire me. I told them very bluntly what my diagnosis and prognosis was and they hired me! I start in 3 weeks and while I'll miss the people I work with now, it's amazing to be accepted by a group of people who want to help me make the most of my life.
I agree with the intermittent pain; I was diagnosed with muscle strain and prescribed massage therapy after I tripped over the kitten and couldn't walk without agony afterwards. I'd had intermittent hip pain for about six months but everyone ignored it. My knee also hurt; the doctor who finally ordered an x-ray for it found arthritis in my knee. I mentioned hip pain and he ordered x-rays and three days later I was in the hospital having a pin put in my femur since it was about to shatter.
I had the OncoType DX test that said I had a 7% chance of recurrence, and here I am, with bone mets six years down the road. However, as one doctor said to me, "someone had to make up the 7%". With regard to survival, I intend to be a statistical outlier and be at the other end of the bell curve. It's really encouraging to read about women still around after 10, 15, 20 years, and the encouragement and good thoughts are much appreciated!
Kind regards,
Terre0 -
Terre, welcome. It's so nice to see you have such a positive attitude. So important in this adventure we are on.
Michele
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Though I do not have mets, I have two friends currently living with bone mets. They are both stable!! Femara did the trick for one. Please see the petition for the European bone builders that are showing much promise for bone metsters.
I just wanted to share my thoughts on telling folks. If I had it to do all over again, besides the obvious part when I was bald, I had a wonderfully freeing time NOT telling folks who weren't part of my original care team. Unless someone reached out to me with something I felt I could offer to help, I now understand that telling folks about cancer can often put a strange wedge in a relationship. The great thing is, that is what we are all here on these boards for. I rely so much on my friends here for that reason. The rest--I have so much I want to do and offer the world, and cancer is not going to stop me. I don't need to share it with people who genuinely do not understand what it means or that in my heart, I am better than ever.
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I hope you don't mind a dumb question from a newcomer to this group. I don't seem to see anyone in this bone mets section with an ER/PR negative and Her2 positive diagnosis. Searching around on the internet like you mentioned before, I ended up finding that bone mets in my situation have a somewhat bleeker outlook.
I would very much like to hear from Her2 positive people if there are any with bone mets. I have been a very positive person all my life, now having a bit of a hard time seeing the bright side :-)
wishing all a wonderful weekend
Hilde
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Never a dumb question.
Welcome here Hilde. You will find a lot of information and support. I have mets but am ER+/PR-, HER2 +. Please take what you read online with a grain of salt, everyone is different and not a statistic.
Try coming over to the stage IV forums and you will find someone else in your situation. There is a bone met thread there. You could post your question there.
Hope you get the information you are seeking. I'm sure others will come along with their experiences.
Glad you found us.
Best to you,
Diane.
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Thanks Diane,
it's nice to welcome somewhere :-). While I have a lot of support at home, I don't feel free to talk about it. I have a very dear loving husband but he is in total denial. He has this notion that since I managed my Emphysema quite well all those years, I will just do the same with this little nuisance.
It helps to be able to just talk about it.
thanks again
Hilde
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Diane, my hubby is super supportive, but nothing beats these wonderful women for support.
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I am currently sitting in hospital by myself several hours from home. I have been eight yrs free of breast cancer and never thought I would be back on these boards. I came to the hospital last week for a removal of a gallstone in my bile duct and after a ct scan this morning they tell me I have bone mets to spine, ribs and pelvis. My husband had to go home to work today and thinks he is coming to pick me up tomorrow. I haven't told anyone and I'm so scared I don't know what to think. I don't feel like I have it to fight like that again and vowed I would never again go through chemo. I want to know that I can still be here when I am 80! (I just turned 47) I am reeling from expecting to be in hospital for half a day and now this....
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Oh honey, I'm so sorry you've got this news. Just wanted to say I'm thinking of you and sending hope, strength and prayers your way. You are not alone. Hugs to you.
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Notso,
Finding out that you have mets is like a giant punch in the gut. It is such a heavy blow. Are you ER+? If so, you may be able to go on aromatase inhibitors (AI) and not straight to chemo. I have been NED on Arimidex for almost two years. If you fill out your diagnosis, it will appear in your signature line and those with similar dx can give you some advice. I know this is devastating, but the initial shock wears off and once you get a tx plan in place, you can move forward. It still stinks, but it does get better and there is hope.
Caryn0 -
Hi there! I just wanted to chime in and say I am so sorry you are dealing with this. Can you call your husband to come earlier to give you hugs because you need someone there to help you to understand what the doctors are going to be saying! I wish I knew what to say to make it all better! Please know my thoughts and prayers are with you. ((((((((((notsostepfordwife)))))))))))
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Notso. Sorry that your back on the cancer train again. I know how scared you are. I was rediagnosed about 5 months ago. It sure is scary for sure. It's to bad you couldn't be at home in your hubbys arms to comfort you. Soon I hope. At first it is a shock, but after you talk to an ONC and get a plan, you will feel more like you are in control. Having control is having power. Having power will make it a bit easier and less stressful. In the mean time we are here for you. I have read of many women who have been dealing with mets for long time.
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