Metastasis to bones, so scared.
Comments
-
Thanks for all the replies.
My mets are in the spine and i am having a bone scan to identify any mets in other bones.
I am starting Chemo this week. The regime will be weekly for at least 6 months.
Good luck to all of you out there fighting the same battle x0 -
Hoping the scans don't show anything else and your treatment is gentle on you.
Love n hugs. Chrissy
0 -
Dear friends,
This is the first time I am writing and I guess I am scared because my mum has just beed diagnosed with Stage 4 metastatic breast cancer. I want to be a strong for her but I do not know what to expect. The doctor said that it can be contained but what are the percentages? Are they high? And what does contained actually mean? I have so many questions and I do not dare talk about this with my mum even though we're very close - cause I do not want her to know about my concerns and worries. I am sure that deep down she must have her own but she never says anything. What should I do? Should I talk to her about this or should I keep on the act of strength? What does metastatic breast cancer really entails? What is in store for us? How will we know that this monster is actually being really kept under control? Can anyone help me please?
Thanks in advance.
0 -
SanAb, there is a forum specifically for caregivers. You might find more responses if you re-post your thread under that topic. I wish your Mum well. You are a wonderful daughter for trying to find out all you can.
Edit~for spelling.
0 -
Thanx for your support sister. Hope we wud meet soon. Plz visit India.I am a fighter and wud fight till my last but I just want a peaceful end... I am a lecturer and my students luv me a lot but these dayz bcz of my pain I am not doing justice neither with my students nor with my kids. All the time i am worried about settling my pain.Sumtimes I groan like anything n when my kids are around me I feel very uneasy bcz I think they wud be worried and wud lose their confidence. my elder daughter who is 13 , smtimes says - mom ! There is no God. But i try to convince her n ask her to hv faith in God.Lets hope fr good Dear...
Luv to everyone
0 -
Hi Desi!
I am undergoing third line of chemo. the first line chemo ws Epirubicin and Docefact(6 cycles).Then 2nd line ws wid Gemcite n Carboplatin.3rd line now is Pemtrexate and Oxyfact. I am ER,PR-Positive and HER- Negative. I hv not undergone ny operation. My area of bone mets is spine, Sum Ribs, Skull and sternum and sum areas of pelvis. I hv undergone radiation therapy also. I hv immense pain in my lumbo sacral spine area these days. I dn wan to show myself weak in front of my kids bt sumtimes my pain makes me helpless n i groan with pain in front of them. I hv to live long fr my kids n I wl live long. I hv to complete my resposibilities bcz I m a single mother bt I hv support of my papa n mumma. i am a lecturer n i hv gud wishes of my students and my family. N nw I hv friends like u,so um going to win ths battle. I am sure. Hope to hear in frm u soon......
0 -
Hi, I was wondering if the term "bone mets" includes spine mets or is "spine" different? If there is cancer in the vertebrae (bone part) is that a very different thing than just "bone" mets which could be anywhere else in the body? My mom went from a mastectomy on May 2nd and being presumed cancer free to finding spinal/rib mets last week only because she complained of back pain. To be more specific, the doctors "think" it is metastasized breast cancer but did a blood test on friday to rule out multiple myeloma, which can look very similar and is not uncommon for someone in their 80s to have. Will find out tomorrow, I think. We know she has to worry about spinal compression and paralysis but I am just wondering if I should be paying attention to all the posts that refer to bone mets (which are honestly more encouraging than I expected) or if spine mets are thought of as something totally different. I have not found very much out there just about the spine - maybe it is more common for more than one bone area to be involved. I did read about 3 cases where breast metastases were really myeloma, so I guess it pays to question. Bones or spine or breast cancer or myeloma - not sure which of these scenarios is more favorable - it is all relative.
0 -
HI there, I don't have any answers for you but know others will be along soon to chime in. Wishing you peace and strength as you help your Mom through this.
0 -
I there, I'm sorry I don't have any answers for you. Did you get any more information yet?
0 -
Yes thank you. We got very informative, helpful answers including starting meds and better painkillers. It is encouraging that bone mets are deemed responsive to treatments. Apparently the doctors are still surprised at the metastasis -going from early stage to stage IV so quickly with little evidence of lymph node involvement - so they want a biopsy of the spinal area. Blood tests ruled out myeloma but it is interesting that the doctors still have a bit of doubt about it being breast cancer metastases. I think the doctors are not comfortable when things don't follow the pattern they typically expect.
0 -
Meghan,
If the biopsy confirms bc, then it was probably there all along and not just a quick metastasis. Even with no nodes involved, cancer can travel through the bloodstream. I also had what was thought to be an early stage bc but a mt was found on my femur quite by accident. Wishing your mom the best.
Caryn0 -
Hi I am the husband of a person diagnosed with breast cancer and bone lets 4 years ago in August . She responded very well to hormone therapy currently on femara and bisphosponates. She has had 3 sessions of radiaton therapy for some hotspots. The lets were in her vertebra, pelvic and rib areas. Currently going strong and is being managed as a "chronic" ailment. We consulted a dietitician (many actually) and she follows a diet of low to no gluten (wheat), milk (butter ok), sugar/artificial sweetners (use organic maple syrup) and soya. Organic meat products preferably chicken or fish as your protein. Also supplementation of Vit C, D and Calcium essential. Once she started on the diet and the Vits there was ongoing and meaningful improvements. She has been in this "stable" state for +- 18 months now. Lots of hope out there be positive
0 -
Glen, welcome and thatnks for posting. I'm glad your wife is doing so well. It gives hope, at least for me.
0 -
Hi there!
I hope you don't mind me joining your group. BC in my right femur at the hip was confirmed by bone biopsy last Wednesday.
I'm still in shock over it but I'm glad to find support and encouragement on this site.
I don't have a treatment plan yet but know I will be getting radiation - no chemo?
I see my RO on Wednesday morning but I'm not sure what to expect this time around or even what to ask him really...
I know I'm going to ask for a copy of my pathology report from the bone biopsy to see if it's any different from original dx.
I want to know if I'll be able to drive myself to rads or if I'll need help (right femur - driving leg).
I'm NOT going to ask prognosis because I know everyone is different and I'm sure I won't like the answer!
Anything else?
Thanks!
Marie
0 -
Hi Marie,
Sorry about the circumstances, but welcome. I had a 2 cm met to my upper left femur , with no pain. I had rads x15 to the area and drove myself to and from the treatment center without a problem. I have not had chemo, only Arimidex, since I am ER+, as I see you are as well. Please feel free to ask me anything!
Caryn0 -
Hello Marie, good to see you here, so sory you had to come though. I know it's a shock, but it will wear off and then you will get right into the groove of things...
0 -
Hi Meghan, I have spinal mets which is the same as bone mets. In the visit report my onc said it is mets to the bony skeleton.
Marie, I remember you from the tumor markers going up thread. Very sorry to see that you have mets. I did not have rads, just letrozole and xgeva. It seems like rads are given when there's only one or maybe 2 lesions. I'm not sure about that but that's what I'm thinking when I see that people with no pain get rads.0 -
My Original DX info is listed below. I got the results of my PET scan today. I have a recurrance with mets to my sternum. The exact dimensions are a blur but it looked like a fairly sizeable portion of it lengthwise. I am supposed to get a sternum biopsy next week. The only plus is that it's localized to that area. I think I remember the report said SUV 5.0 but have no idea what that means. What are those sternum biopsies like? Much pain afterwords? How long does the pain last? A radiologist at the hospital will be doing it.
Onco also mentioned that he THINKS its the same breast cancer as before (but obviously wont know for sure till after the biopsy) but when I asked if it was the same what the treatment would be he said radiation and an oral medication then went on to tell me about one woman who lived for 25 yrs. I've known other people who have had radiation for lungs, etc and ended up not being able to eat/swallow due to burns to their esophogus. Has anyone who had radiation to their sternum ever experienced these or other "unforseen" long term side effects?
Any info would be greatly appreciated. Thanks!
0 -
Yesterday I was given the awful news of bone mets to hip and tail bone. Needless to say, I am not doing well. My onc wants to take me off the Tamoxifen and start Faslodex and Xgeva. I have read all the info on this, but would like to here from others who have experience of this. Thank you so much!!!!
0 -
Nursie, there's a thread called "Faslodex girls." There are a lot of us on Faslodex, and the thread is really helpful in dealing with the injections and SE's. I'm not taking Xgeva, but a lot of the women in the Faslodex thread are and could help you. Good luck!
0 -
I am taking xgeva. Its a very easy treatment with no SEs for me and I think its that way for a lot of if not most people. I don't know about F but I'm on Letrozole also having no SEs but am starting to get hot flashes Worse than usual.
0 -
Nursie, I get Xgeva and Faslodex shots every month. I have mets in my hips, pelvis and spine. I recently went off Tamoxifen and started Arimidex. I have found that the Faslodex actually helps any pain I get from the bone mets. Unlike some, I get pain as I near my time to get another shot and right after the shot it diminishes. I haven't had any problems with either shot. As with all the shots/meds, I find that walking 2-4 miles 5 days a week really helps control any pain and keeps me active.
1 -
So far I only have one tumor to my lower lumber vertebrae. It is considered to be bone mets. I had 10 rad sessions because it was pressing on my spinal cord and causing hip and leg pain. After the rads it is much better. I am now doing weeky taxol. I've only had 3 sessions and so far the SE are just fatigue and a little bone ache in my lower legs. I was told by a cancer expert that people with just bone mets have a pretty prognosis compared to more extensive mets. it is still a lifelong battle with cancer but she reassured me that I can have many good quality years ahead since there are many treatments available. When I was first dx stage iv I thought it was a immediate death sentence but I now know that it is a battle that can be fought.
0 -
It is always so reassuring to know that people can live long lives after getting a bone mets diagnoses..
0 -
Reasons to be optimistic: Regarding the statistics of survival time for patients with bone mets (that was mentioned in the first post)--that data lumps ALL types of patients and diagnoses together so it is not very meaningful to your particular case and anyone's particular case. While it might seem frustrating that doctors say "no one knows" or "everyone is different", I believe that is the honest answer and not just a tactic to avoid giving bad news. Consider the fact that generalized "prognoses" use data that includes elderly, people with the most aggressive subtypes, educated patients as well as uneducated patients, patients who don't comply well with their medications or who skip checkups, patients with numerous recurrences, patients with comorbidities -diabetes, heart disease, etc; patients with mets to other organs at the same time, patients who may even have been diagnosed in the 1970s or 80s. etc. The patients in 2013 who are getting treated now will be part of a data set that will be analyzed in 10, 20, 30 years from now --today's patients are getting the benefit of 2013 knowledge and treatments. It is almost impossible to find a clinical study that has a whole population of people just like oneself - the same exact diagnosis, at the same age, the same quality of care and compliance, etc etc. Aiming for the most favorable outcome is most reasonable when doing all the things that can help shift things to be more favorable - staying educated, complying with treatment appointments, taking medicine as directed, sleeping, eating intelligently, seeking good care etc. Most people who seek out these boards are probably proactive and would never consider canceling doctor appointments or skipping meds or letting prescriptions lapse, but apparently it does happen. I just think that statistics can be scary because they look so "black and white" but it is not the case if you dig into the data. There is more reason to be optimistic than at any other point in time.
0 -
Very well put meghar! Although I felt this was the case having it typed out like this gives me so much comfort to read it.
Thanks!
0 -
Meghar, thanks! That was very well put and very reassuring. I was so depressed and pessimistic at first, but I was relying on old statistics. My doctor did give me an optimistic prognosis, which made me feel a lot better.
0 -
Thanks
0 -
Did you tell people about your mets?
When I was originally dx in 2009 I told everyone and I mean EVERYONE that I had breast cancer - it was my own personal public service announcement. "Check your boobs, talk to your doctor about strange stuff - I had yearly mamograms for almost 20 years and if it can happen to me it can happen to anyone."
Did your friends organize a help rotation/roster? I did with meals and offers to drive me to drs and chemo. I did take some friends up on the drive to chemo when my husband couldn't make it and I did appreciate and enjoy the prepared meals.
But this time around I'm not really telling anyone except a few close family members and some really close friends. I'm tired of being the poster child for breast cancer in my group of friends and now I just want to get on with my life.
I start my radiation tomorrow and then for 9 consecutive weekdays after. The friends and family I've told have asked me if I need someone to go with me but I don't really want anyone to come with me.
Is that strange? I don't mean to be ungrateful I just want to get this done and over with and I don't want to wallow or feel like an invalid.
I understand that these people love me and want to help me anyway they can. Is it denial that makes me refuse their help?
How are you all feeling about telling people about your mets and accepting offers of help?
Marie
1 -
I told people each time the cancer came--when I was first diagnosed, when I had a local recurrence, and when I had a metastasis. My change came in how much research and communication about cancer I wanted to do. The first time I researched everything, joined a support group, and was very involved in an online message board. The second time, I didn't want to know very much about the disease and I didn't join support groups or message boards. This time, it took me about 3 months to do any research or join this message board. At first, I just didn't want to think about cancer, but now I'm trying to be more knowledgeable, and I'm relying a lot on the online companionship of the women on this message board.
1
