Bone Mets Thread
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Dear Tracey,
I don't know anything about your reasons for not telling your family, so I won't comment on your particular situation. For me, I believe that secrets have power over me, so I try to have no secrets as much as possible. I believe that my strength lies in transparency to the fullest extent possible. What that means, though, is that if someone uses my transparency to undermine me, I have to be willing to do something about it. Transparent does not mean 'sitting duck'.
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Tracey,
Welcome, though sorry you have to be here. Who to tell, and when, is a highly personal decision that,IMO, has more to do with family dynamics and relationships than whether your disease is visible. I have been very open with my family, some who live nearby, some who don't because that's just the way I am and my family has always been open about almost everything. We might, at times, hold off for a bit, such as not revealing bc mets at a cousins wedding, but overall we feel that this is the best way to support each other. BUT... That is just my family. My adult daughters, who live nearby, who kill me before bc does if I ever withheld info from them as would my father and brother who live on the opposite coast. So, my long winded point is that there is no "right" way. Do what feels right for you and your family.
Caryn
PS: just passed the 3 year mark and have never looked ill. Many are baffled about how I could be stage IV and look fine. I also just realized I told my parents about my dx right before my dd's engagement party. The only reason I did this was because they were in CA and it gave me the chance to tell them in person. My sister had passed away several months prior and her husband was not very forthcoming about her condition. The secrecy really upset my parents.
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alexgram,
Just read your post. Yes, I feel the same way and that is part of my family dynamic, but for some people, it's not and that works for them. For me? Secrets are like monsters.
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Hi Tracey and welcome to BCO......sorry for the reason you are here though. The decision to tell or not to tell is really up to you although I do know women who have chosen not to say anything at this point due to the fact they are well and as yet are not showing visible signs of treatment.
I told my family although not my aged Mother as she had health problems of her own and having already lost one child to cancer I knew she would just sit and worry about me. She went to her grave not knowing and for that I have no regrets.
My siblings, like many people, didn't understand that stage IV is not curable but after many 'no, I will die from this' they finally got the idea and have been very supportive.
If not telling your family is going to make things easier for you then don't until you feel you need to.
Love n hugs. Chrissy
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Tracey, it's such a personal decision. Eventually, your family will know. So the question is, how would they feel knowing you withheld this from them for what could be years? How are they likely to react if/when you tell them? Will it make it easier for you or harder?
I can tell you my story. My sisters live in Los Angeles, I'm in Israel (now THAT'S distant). My parents were also in LA before they passed away. I told my sisters as soon as I found out about the mets - I could not imagine NOT telling them. It would be like a big block in front of me every time we spoke to each other if I didn't. One of my sisters went to my parents to tell them since we all felt it would be easier than for them than hearing about it on the phone. My mother had Alzheimer's and didn't really understand it. When I got the mets dx I had only one lesion so I stressed to my father that it was chronic and could be dealt with. I had progress in bones a few months after my mother passed away and told my sisters not to tell my father - he would not have been able to handle it. I don't regret that. His health was terrible then and he passed away about 9 months after I found out. I seriously believe it would have killed him earlier if he had known. When mets were discovered recently in my liver I told my sisters. BTW, my kids all know, and they also know that I will share everything with them (they are all grown, not little kids).
Leah
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Thank you Kiwicatmom! It seems I've had so much progression recently. My last PET scan, it looked like I had chicken pox inside out there were so many spots!
Regarding scans....I've had CT, MRI and PET scans w/wo contrast on average every 2 months. My Doc intended to do them every 3 months, but either my tumor markers jumped, or a symptom, or my gut intuition, led him to order them sooner. Every time, my gut was right, re: brain mets and now large met on rt femur, or the tumor markers rising were correct in influencing our decisions. I'm so glad I have a Doc that "is on it". Every situation is different. So, it's important to be active in your treatment plan and listening to your gut.
As for what, who, when to tell.... That's a personal decision. I use a website called caringbrige.org for my oncology updates. I've given the website to family and friends. It's on them if they want to "follow along". My parents are gone and I'm single, so it's mostly for friends and distant relatives. My kids and I have a very close relationship, so I'm not sure they even read it, as I see them all the time and we communicate daily. But, again, I think you have to listen to your own intuition and trust it.
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Tracy, sorry you have to be here. I too want to stress about getting all your dental stuff dealt with before starting Pamidronate. The Pamidronate hasn't been too bad, though the first one set me back for a couple of days but each one is getting better. The bone pain for the first one was bad & I could have used something like tylenol 3 for that one, but the rest I would maybe take one regular tylenol if I was feeling flu-ish.
As for telling the family? I, like others here, find that secrets are hard to keep. I have told all my family & close friends, stressing that I will not look like a cancer patient. I told very few people when I was first diagnosed, but now that I've had bone progression most people close to me know.
Skylotus, so sorry to hear that you are having some progression. Hopefully they can find something that will work to stop this beast!
Hello to everyone else!!
I am having a full body bone scan on Monday (scared sh*tl*ss as I'm very claustrophobic) but I will suck it up as I really want to know what's going on. My tumor markers went from 60 to 29 to 17 since May, so I'm hopeful. Dee
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HI Tracey, I've been wrestling with similar decisions on who to tell and who not to tell. I'm not quite three years out NED and just dx mets on the 15th, to sternum, among others, still in shock and denial. I couldn't not tell my family personally. We debating holding off telling my sister who is in the hospital on bed rest expecting twins, but decided now was better than after the little guys were born. So, mom, sister, brother and m-i-l know, s-i-l's do not. My debate is more about my friends, near and far. I've two children, 14 and 10, who we told last night. The last two times, I told my closest friends near me than sent a "blast" e-mail to friends, family near and far. Needed support for my husband and kids and could use all the prayers I could get. Not sure what I am doing this time. Told my two closest friends yesterday and that is enough for now.
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I wanted to add that I told many of my friends in an email. It allowed me not to get too emotional on the phone or in person but it also gave them time to digest the information before talking to them or seeing them. Most of my friends said they appreciated getting the info this way. Dee
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Thank you GG. I was diagnosed Stage 4 last summer. It was discovered when I had a CT scan prior to a surgery for reconstruction. My implants from my previous reconstructive surgery had ruptured, the silicone liquified and 300cc leaked out into the surrounding scar capsule area. Initially, when this was discovered, I had a tumor in my lung and some bone mets. My tumor markers were 30. In a year it has progressed to many, many more bones, my brain, my liver and my other lung. To me, that's a LOT!! My tumor markers were at 733 at last test. I have only seen progression since I was diagnosed, except for 2 months my Doc called "stable". That's why I call cancer a "trickster". I was 15 years out when I was diagnosed stage 4, and have seen this much progression in one year's time. That's why I write about it, life moves quickly and it doesn't stop for a cancer diagnosis. Thanks. ;-)
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skylotus, wow, what a lot to be going through....
You're right, life does move quickly & doesn't stop because of "C" 15 years out is a long time. My onco basically told me that I was in the clear after 5 years & she "dumped" my file because I was too healthy, well then along came year 6.... Like I said before, hopefully something will come along to tame the beast even if only for what seems like a moment.... best, Dee0 -
Hi Reading - welcome to the group. Sorry you're here but happy you found us.
Tracey - Who to tell? I told pretty much everyone largely because I'm a horrible liar. That said, I have no immediate family, so that made it easier. I agree with what's been said - it's a personal decision. Give yourself some time to decide who to tell and what to tell them. The hardest part of telling people was them basically writing me off once I told them. Some people just know I have a "chronic" condition; others realise it's incurable at this point in time. You're recently diagnosed; it took me several months to let people outside of my "inner circle" know. And I let them know more because I want my husband to be supported. I also talked to a counsellor about it, which helped. I will admit to being a bit annoyed - people who have promised to visit for five years (and haven't) suddenly wanted to plan trips to say goodbye to me. That was pretty awful. But others showed up, helped clean my house while I was on crutches, and have showed up again. So, my recommendation is to give yourself some time to decide and you'll figure it out.
Sky - I am very much counting on your doc to find the right combo to get and keep you stable!
Hugs to all,
Terre
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Hi GG and Kiwi, that's one of the many, many misconceptions about this disease! That after 5 years you're cured! That unless you're bald, you're not really sick! I think the media doesn't help in portraying the truth about this disease at all. Cancer patients are always portrayed as bald, frail and puking. That's why it is up to us to be the truth! That it can and does come back 10, 15 even 20 years later. That only a few chemo agents cause total hair loss. That we can be contending with this disease for some time and live relatively "normal" lives. That is the reason I write about it. That is why I suggest letters to the editor when yet another "celebrity" is portrayed BALD in the media! We have to be the voice. Otherwise, we are forgotten, along with our one day for MBC, October 13. OK. I'll step off my soapbox now. :-/. And Kiwi, I was gonna write about exactly that next! ;-). And GG, I hope you kept your own set of copies of your records!
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GG- I got dumped after five years too. I think if they had left me on Tamoxifin (I was pre-menopausal and hormonal as hell) that perhaps I wouldn't have recurred so soon. Hindsight is 20/20. I do have all my records, thankfully, even the ones from the US.
Sky - I hear you sista! I tend to hang out on the same soapbox.
My hair has gotten thicker and curlier since Femara, ironically, so I look like I have more hair than before I was "sick". And I'm certainly not frail looking with the Femara helping me pack on 10 kilos. And sadly, it can come back at any time. I met a woman while I was in hospital. She was visiting a friend and has BC in both breasts - two different kinds at two different times. Her last time was 1988 and she had been clear so far. She said she'd asked her oncologist when she could quit seeing him, and he told her "when you're dying of something else." Sad, but accurate, I think.Hugs to all,
Terre
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skylotus, I should have been clearer when I said she "dumped my file" it wasn't literally. She just meant that I didn't need to go to see her unless there was something specific & it meant that my file wasn't in her ongoing. Stay on your soapbox. I think that is why we need to stop not telling people that we are stage lV. If we are hiding then all anyone thinks is that we are balding & sick. Folks who know my & know my condition are always amazed at what I am doing, considering I'm "sick"
KiwiCatMom, I was on tamoxifen when I recurred. I had tried all the AI's & had severe SE's so went back onto tamox. I was just about at my 5 year mark on hormonals when I recurred. I stopped eating wheat a couple of years back & my joint pain went away completely. When I was trying all the different AI's the worst SE's I had was such severe joint pain that I could have my knees touching at night the pain was so bad.
Good night all, wish me luck with my bone scan tomorrow!! Dee
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Hi, does anyone here know if the kind of bone tumour flare that can be caused by tamoxifen could also be caused by Afinitor with Aromasin? It is my second bone met in the pelvis that started hurting very much between week one and two of the new Afinitor. Of course I will ask this question on the A/A thread, but wanted to see if anyone here knew or had any ideas. I am going to discuss a new MRI with the onc on Thursday (I made the appt today) but maybe he will say it is a flare and I should wait awhile before the next MRI to see how the Afinitor is doing. Whether it is a flare caused by treatment or not, it is still scary to have such a sudden increase in pain. It is making it hard to function because I am so anxious.
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Thea I would take it as a tumor flare as it can happen with all of our treatments. If you had an MRI not so long ago I would leave it a little while longer before having another one......give the new combination time to do it's work well.
Deep breath, not every increase in pain levels is a progression.
Love n hugs. Chrissy
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Thea, When I started arimidex after being on tamoxifen, the tumors in my back flared something terrible. My onco warned me of this, once a new treatment is started, she said it showed the new treatment was probably working. It lasted a couple of weeks, not severe pain for the whole time, but certainly sometimes more so than others. I would take a tylenol when I had to. My markers have now dropped significantly. Like Chrissy says "not every increase in pain is progression"
I wouldn't have another scan right now, give it some time to do it's job. Cheers, Dee0 -
Hey Thea, not sure if you want to ask your MO about this but when I started my Femera I was told about the possibility of flare. Since one of the mets in my spine was close to the chord they wanted to avoid possible perm damage so he put me on steroids to reduce inflammation. I'm not sure if that is the same type of situation though. And getting off the steroids SUCKED!! But maybe it is worth asking about.
Renee
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Hi Everyone,
Thanks very much for your advice on who and how to tell family and friends about the change of status. It's very helpful. I don't want to be deceitful and think my family would be upset if I didn't tell them, on the other hand I don't want them to worry needlessly. I think I will tell them.
Dee (GG27),
Have you ever tried Lorazepam (AKA Ativan)? I too am terribly claustophobic in MRI machines - not any where else - just there. I used to come out so pale and shaky the techs were worried - I couldn't tie the laces of my shoes back up when I dressed. But Lorazepam is a charm. You'll smile all day.
Skylotus,
I have also often wondered why being bald from chemo is depicted as the worst part of cancer and the sole reason why people should support cancer causes. Geesh!
Here's to hoping everyone has a good today and another tomorrow!
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Tracey, I took 2 ativan today & had no problem. But I think the best part was the technician chatting to me the entire time. She kept my mind from wandering & fretting over the scanner right over my head. She was wonderful. I really wanted to get a good scan as I always worry about skull mets.
Hope everyone had a good, painfree day! Cheers, Dee
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I'm so glad! It's quite the experience that machine.
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How was your bone scan Dee?
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I know and agree about the losing hair- or even your breast(s). Even my onc kept point out I wouldn't have to go bald when he told me about the change in treatment plan- I went from a stage IIA to a 4 in 2 weeks after test results came back. Nice way to spin this...
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Hi, all ~ I've been away for a few days, so still need to catch up on the last couple of pages here. But I wanted to comment on the question of who to tell and when to tell them. I always think it's best if you can allow a bit of time between finding out and telling anyone beyond your closest family members who will be hurt if you don't tell them what's going on. I learned that it takes some time to digest what's happening, get started on tx, and hopefully regain a somewhat more positive perspective. And once you've done that, it's much easier to reassure anyone you decide to tell that there are a lot of treatments available to you, and that hopefully there will be even more coming along in the near future. I know I shared my bone mets dx with quite a few people I would call casual friends -- mostly because they'd seen me limping around with a cane and knew I'd ended up in the hospital. But in retrospect I wish I hadn't because I've bounced back to the point that I probably never would have even told them now because most ppl do not understand metastatic bc, so will give you the pitying look when they see you, or the "How are you really doing?" questions, or somehow let the bc attribution start to define how they see you -- which is something I don't think any of us wants.
Now the flip side to not telling people is the sort of thing I ran into a few nights ago when I was out to dinner with a large group of friends we were traveling with who don't all know about my bc, and the conversation at the table turned from birthday parties and catering to a luau that one of the women had hosted for someone she knows "with Stage IV bc that had started in her breast and was now in her brain." So then of course someone else at the table had to tell a story about someone he knew who had brain mets, and what had been a lovely dinner suddenly turned into a situation where I felt annoyed and victimized by their stupid conversation.
But I still prefer to err on the side of privacy with anyone other than immediate family. Deanna
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dunesleeper, Thanks for asking, it went fine. DH usually comes in with me, but couldn't this time, so I asked the tech to keep chatting with me & she did, so much so that I was completely distracted by the conversation I didn't have time to be claustrophobic. Now having said that, I had taken 2 ativan, so I'm sure that helped "a little bit"
But now I'm not afraid of the bone scanner, so it should be easier next time. I won't get my results until my next onco appt which isn't until October 22. Not sure if I can wait that long....
Deanna, Nice to see you back!
Cheers to all, Dee
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3kayonc3, Sorry you have joined our little group, but welcome! Hopefully you will find support here! Not sure about the spin on your diagnosis, but we all have to try to look at the glass as half full! Cheers, Dee
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Oh boy oh boy. The hearing is this morning. After that, I hope I can relax -- or at least focus better on the tasks that remain. My mother is going with me, and that seems to be helping with my anxiety a lot. This takes place at 9 am. I think I will skip my pain pill so that I can focus a little better. Yesterday, my head just felt . . . stupid. LOL.
At 2 pm, I'm going to lunch with my aunt and uncle from Florida. At 7 pm is my monthly Campaign for Liberty meeting where we will be discussing Maryland's proposed "Vehicle Miles Traveled" tax. Then we head over to Chili's where I have an enormous Guinness (my one beer a month). Busy day. Hopefully I don't poop out before the meeting. It is pretty much the only socializing I do anymore. Oh, they are so young and idealistic. However, they are interested and involved in local politics. Several of them have been voted onto the Republican National Committee. A couple have won primary elections. It is encouraging to see the energy they bring to issues and elections. I wish there would be some older people, but it's all good. They treat me well, and when I was able to do more (and lived on the other side of town) I helped with lit drops. Anyway, I really enjoy it -- especially the beer at the meeting after the meeting.
So, you have a good day. I'll be checking in on you tonight.
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The hearing is done. Nap time now I hope. It sure would be nice if they award me the retroactive benefits. I should know by December. I pray the judge feels generous.
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Hello, everyone.
I'm Eve. I'm new to this forum, and to cancer. In August I saw my doctor about breast pain. In September I had a mammogram, biopsy and MRI. Confirmed cancer. Last week, I had a thoracentesis. Today I got the results from my PET scan. Mets to the sternum, pleura and several lymph nodes in the chest.
My oncologist wants to treat me with Tamoxifen and remove my ovaries. It doesn't seem like enough. What about chemo? I kept asking. He said it was about quality of life, and we could revisit chemo later. How soon does he think I'm going to die?
I know: you can't answer that question. It just seems like it's not enough for such a serious illness. I was all mentally prepared for the ravages of chemo. Now... well, this seems like it's just giving up.
Has anyone else felt this way?
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