Bone Mets Thread
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Nine, I think everyone is different. I had relatively small tumors, but the effect on my quality of life was significant. Others have much bigger or more extensive tumors but feel fine.
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Happy Thanksgiving to all of you in the U.S.
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Yes, imaging on PET scans allows the radiologist to make a reasonable estimate of size. I would think that smaller is better, but that may not mean much in the overall picture or outcome, if that's what you're implying. As far as tumors effecting QOL, I think that location may sometimes trump size. I know we all want more clear cut answers but there are so many variables that it's hard to say. I had a 2cm met on my femoral head and never felt a thing. Sorry that I don't have a better answer.
All my shopping is done, side dishes have been assigned. Squash has been baked and mashed for casserole. I'll be baking the pie today, then the butternut squash casserole. Will season and prep turkey tonight. Younger dd is coming over after work to help me clean house and prepare her famous artichoke dip. My girls love that I host Thanksgiving but younger dd promises to host next year. I won't mind
Happy Thanksgiving to all!
Caryn
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Dianne:
I was also Node neg...taken Tamoxifen. My OC is saying that is what brought my METS on I was on it for 2 yrs...after first 2010 Breast Cancer IIb Left breast removed...and 9 Nodes removed...Chemo/Radiation/Surgery (which was difficult)/Chemo....2 yrs later in 2012 Uterus Cancer total Hysterectomy....Got all the Cancer No treatment...April 1, 2014 after suffer for 5mths with severe migraines...DX Stage IV Bone METS....xeloda for 3 sessions (Side effects cause me to end up in hospital April 28th with a ruptured bowl... had to have 2ft colon removed..with a colostomy bag attached...told OC to find allternative treatment ...cuz i wanted off the xeloda...rather be dead ...I was lifeless ...They put me on Taxol IV...and doing great tumor markers down from in the 200 to 55...bone mets (scan PET) have dissipated....I can function daily...I have tumor in brain stem bone...spinal cord L 6-8 ....right hip/femur which is the only pain I have...Had MRI on Monday...inflammation on femur in hip caused from radiation...and now going to see a Ortho...to see what he suggests for my hip...other then that...I live a pretty active slow life...I can move and function and enjoy my grand boys...and I want to live 10 yrs plus...so will see what this journey entails...but for now...I am ok...but I have my moments of sadness as we all do...because of this disease...
I am great full for this group...I love you all ...Happy Thanksgiving...be thank full we are here to say that...Peace Out Carla
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Meal planning and food shopping done. Today I'm working on a homemade stuffing (my Alsacian grandmother's recipe) and baking a pumpkin pie (guests are bringing others) and just doing some light straightening up and polishing. We have special guests coming I'm very excited about seeing/meeting. Feeling very thankful that I feel fairly normal and have my family all here. Just need to remember to pace myself (which I started by sleeping in an extra 1.5 hrs. this morning), and not stress or overdo to the point of aching exhaustion.
Have a wonderful prep day and Thanksgiving, everyone! Deanna
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Thanks, Caryn, Dee and Deanna for the info on tumor markers and port-a-caths! And Happy Thanksgiving to everyone celebrating it tomorrow. It will be nice to be with family for a day!
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Thanks, Caryn and Heidi, for responding to my questions about PETs. I keep thinking I could call my doctor and get him to tell me the results of the follow-up scan. But I don't want to ruin my Thanksgiving weekend if it's bad news.
Tracey - my port-a-cath placement was a breeze. The "twilight anesthetic" was interesting. I was aware of everything; could even hear conversations, but didn't care at all. And it was so easy to come out of after surgery. No sedation hangover. They gave me some hydrocodone pills for post-surgery pain, but I only took them for a couple of days, mostly to help me fall asleep.
All you bonemetsers have a great Thanksgiving, no matter what you do to celebrate (or not). I'm dining with my brother and his family. This year (special Sick Person status) I only have to bring the wine!
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Hi everyone,
Does anyone here have bone marrow mets? I was just diagnosed with 5-10% mets to marrow only. Onc minimized it but everything I am reading is that it's pretty darn serious. I am so depressed.
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hi jojo,
Did you do a search? Pretty sure I have seen someone mention bone marrow mets but can't recall who it was. Please don't spend too much time googling as you often get the worst case scenarios and many things you read may not apply to your individual situation. I know you have probably answered this, but have you had a second mo give you an opinion? I had and have complete faith in my mo but it was reassuring to know that another mo concurred with her. Tough as it is, try to enjoy your family and have a good holiday.
Caryn
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Ok.......I'm back (for my friend).............she's not had a biopsy (which I find...........very strange), she's been treated for arthritis for over 18 months...........couldn't walk etc ...........now they're saying 'why has it taken so long to dx'.........her bones are so???? that the local ortho surgeon won't touch her.......only a couple of surgeons in the UK can do it.......ok...she's going to Birmingham........this surgeon has treated soldiers from war torn situations..........
She's having letrozole, daily alendronisc acid & nothing else.
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jojo, I think any metastasis is pretty darn serious, in that it needs to be treated ASAP to get control of it. But I just did a quick search of metastasis to bone marrow, and I didn't find anything any more alarming than articles about any type of bc metastasis. One thing you have to keep in mind when a report says, "x-number of women were alive 5 years out," for example, is that it's not differentiating if the women who didn't make it had pre-existing conditions, or maybe weren't treated by breast cancer experts. Those things and many other factors can make a big difference in outcome. Also keep in mind that you will probably be getting a more advanced tx regimen than patients included in a research paper dated 2011, who would have had their tx in 2006 (to be 5 years out) or prior. So try not to let statistical outcomes upset you. OTOH, if your onc is talking doom & gloom or quoting statistical outcomes, find a new onc -- one who knows they can do better than outdated statistical outcomes for you!
I'm pretty sure I had some bone marrow mets because the ortho surgeon who did my hip replacement later told me that he removed all the "funky looking" (his words) marrow he saw -- even though the pathology report didn't specifically note bone marrow mets. But I also have bone lesions that image on scans. Do you think threre's any possibility you also have those, but maybe they're just too tiny to image yet? Another member here who was dx'd with mets just yesterday shared that her lesions are the size of sesame seeds, which has made them extremely difficult to find on imaging.
Just some thoughts that crossed my mind when I read your post... (((Hugs))) Deanna
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Enjoy your Thanksgiving day tomorrow. Canucks and Aussies and Brits: you just have a really nice day.
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Deanna, How do I find sesame size lesions? Which scan will find those? My recent PET scan was clear but I realize it only picks up larger lesions etc...
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jojo, I'm pretty sure those were found with an MRI. As I recall, she was told she was clear after at least one, maybe two, other scans. It was the MRI that finally saw them. Of course, I don't know if that's your situation, but it crossed my mind. Also, are you aware that there are 2 types of bone lesions -- lytic (when the bc wears away the bone) and blastic or sclerotic (when the bc forms extra bone). I know my first CT Scan i.d.'d the lytic lesions. When I had an MRI a few months later, the report also mentioned sclerotic lesions. I'm not an expert, but based on that experience, I got the idea the sclerotic lesions may not image as readily. I'm not clear on the difference between a PET Scan and a Bone Scan (my insurance company would only approve CTs & MRIs), but, again, there's probably some difference in what they image.
Hope this helps... Deanna
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Hi Ladies. It has been a very, very embarrassingly long time since I've been on here. I will give a bit of background info before I talk about my current issue. I was 36 when dx with BC. It was in my lymph nodes. Did chemo and herceptin and started tamoxifen. In October 2013 I started having leg and back pain. Found out I had osteoblastic tumor on my rt femur and T10 spine. I had a femoral nailing along with 13 rounds of radiation to my femur and 10 to my spine. I have been on femara for apart a year now in December.It has been a long slow recovery from that surgery, but I was feeling pretty good, and had started walking and even jogging a little. I've never been pain free, but it was manageable in my day to day life. I stopped the walking and running b/c I had a terrible virus, and then I just got lazy..ugh:( so I hadn't exercised in about 3 weeks. Nov 1st we had a Halloween party and I did stand for a long period of time which I'm not used to. I did not drink, and I was not wearing shoes. The next morning I was in excruciating pain in my "bad" leg. I figured it was from standing, so just stayed off of it, iced, and took Motrin for about a week. The pain didn't get any better but got worse. Went to pcp and onc, and MRI, and 3d bone scan were done. Blood tests for infection were done. They found nothing but maybe possible loosening of the hardware. I talked to my surgeons nurse and after speaking to doc she said he reviewed my scans and also consulted with other docs and said everything was as it should be. I know my body, and there is something not right in my leg and the back of my pelvis. There are days I can barely walk. There are days I am hunched over in pain. I have even used crutches when it's severe. I have a lump in the lower part of my back/pelvis that hurts very much. I've pointed this out and it's been ignored. I can't tell if the pain in my leg is bone or muscle pain or both. It often hurts after I've been sitting and try to get up. I am not sleeping and I think I may be going crazy! The scan said something about an osseous reaction, but I don't know what that is. I have cried so much over this and I am mad and frustrated. Idk what else to do! I am desperate! Any advice would be greatly appreciated. Happy Thanksgiving. God bless all of y'all! Xoxoxo
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Hi Sigarcia, an osseous reaction is an inflammatory response by the body to the amalgam glue that is used when a nail is placed to support a bone.
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Slgarcia - Sorry you're going through so much pain. I also had a rod inserted in my right femur in April 2014. Was also never pain free but manageable. About 1 1/2 month ago, I started having intense pain in my hip and thigh. I had an xray of pelvis and femur last Friday and a bone scan on Monday. I happened to accompany a friend of mine for her follow up visit with the surgeon who also operated on me. He kindly agreed to look at the xray - hardware is in place and met on femur is stable. The pain was so bad that I was expecting the worse. I also have a met on the right pubic bone and is stable according to the surgeon. I'm anxious to see what the bone scan will show. Prior to this onset of pain I started soft floor exercises - I wonder if that triggered the pain. But lo and behold, since I had these tests, the pain is once again manageable. Go figure - it's like going to the dentist with a tooth ache... My radio-onc told me I could have more rads - I'm considering this option but waiting for the radiologist's report.Linda
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Hi Ninetwelve:
I believe they can measure the tumours and do this so they can tell if the medication regime you are on is working from one scan too the next. My onc says it does'nt how big or how many there are, once the cancer has moved to another organ but on how effective the treatment is at shrinking them. I presume everyone responds differently to having cancer present in their bodies, i have heard people say that they had no symptoms but the scans show lots of tumours and others with slight growth and are very ill due to pressure of the tumour on other organs or for me it is aching and a feeling of dragging myself about. I suppose it depends also on where the tumours are in relation to pain and symptoms
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slgarcia,
So happy you've updated us, but very sorry for your pain. Have you consulted a pain management specialist? Second opinion onc? Just some suggestions. Hope you feel comfortable her as it's a great place to laugh, cry, rant, rave and just let loose with whatever you feel. Have a happy Thanksgiving.
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sigarcia, from your description, clearly something is not right. I can't begin to guess what's going on, but I would absolutely get a second opinion, because something causing "excruciating pain" should be see-able with the right imaging modality. As you said, you know your body, and if you can barely walk and are in that much pain, I would absolutely get a second (or however many it takes) opinion, until you get an answer.
Linda, hope your bone scan will give you and your docs a clear idea of what's going on. Hopefully, it's as you suggested -- something to do with the floor exercises you recently started doing, especially since it's subsided a bit.
Happy Thanksgiving all! Deanna
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Hi Sigarcia,
Sorry you're in so much pain. I'd definitely get a second opinion and follow it up; however, it could be partly due to the Femara. I had much the same - pin in the femur, rads, etc., and while it was a long road back, I was doing ok. Then boom - big pain in the leg, hips, etc. The big pain spot is just below my waist, in back, at the top of the pelvis. Apparently it's a typical Femara pain spot. I also have had days when I really thought my hardware was whacked, but all is well. I've had two bone scans and a CT scan and no evidence of active mets in my bones or elsewhere. But some days, I can barely walk. I was on femara for over a year before I got pain-type side effects. And they come and go. I got switched to a generic form of Celebrex (arthritis med) and it's helped a lot. But it took going through about 4 different regimes before we found what works. That said, do follow it up, be persistent, and find someone who will help get the pain under control!
Linda - good luck with the scan.
Happy Thanksgiving to the Americans! At least to the Americans still living in the US...
I work with another American here in NZ and she brought in a shoo fly pie yesterday to celebrate!Hugs to all,
Terre
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Hi everybody,
Had a port put in today. Went smoothly. Twilight sleep is the best! Feels a little sore tonight but hopefully the pamidronate infusion tomorrow will be easier.
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JoJo I am replying to your response that "it is pretty darn serious". In a gentle way let me say we are all pretty darn serious...I mean if we are on the Stage 4 cancer page, we have passed the minor ailment category a long time ago. While I have only been on this site for 11 months and it has gone quickly, I hope you will feel enough support and friendship from this group that the depression will be lifted as much as possible. For me it has been helpful to read what the other ladies offer about their experiences. Especially the first month after diagnosis I would come to this site daily for encouragement. Stay strong and let us know when you need a cheer up. Blessings to all on this beautiful day of Thanks.
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Tracey, Good luck tomorrow. I had my infusion 4 days after insertion. I was nervous but it was fine. Glad it went well for you. I will be getting my first contrasts & blood work mid month, it should be interesting! Cheers, Dee
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I'm stuffed and I'm miserable and I have made up my mind that next year on Thanksgiving (if I am able) I will volunteer to serve food at a homeless shelter or something like that. I'll look into it right away in case there is a waiting list. I don't want to eat until I'm miserable. There must be better ways to spend Thanksgiving than sitting around a table full of food making yourself sick.
Still, happy Thanksgiving. Good luck on Black Friday if that's your thing. I'm actually going to brave Toys R Us tomorrow. I need a present for my great nephew who doesn't need a darned thing. LOL. I started to wrap the toy I had for him and I noticed that it was already broken. This kid is so rough that there is no point replacing it with the same thing.
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Did anyone else go through a money-spending phase after their mets diagnosis? I've been going nuts buying jewelry for myself. I bought gold stud earrings, then white gold stud earrings, then a white gold chain, and now a pair of jade stud earrings. Hell. I'm not a girly girl. I rarely even wore jewelry. I didn't have any nice stuff. Now, all of a sudden, I need and am entitled to nice stuff. LOL. Is it just me? Is it all the Christmas shopping? Maybe I'm a shopaholic. I rarely shop, but perhaps Christmas shopping is like the alcoholic's first drink? The stuff sure is pretty, though. I hope I will be healthy for a good long while to enjoy it.
Now I want this jade cross and this gold cedar tree. I also like this tree of life, but not as much as the cedar tree. LOL.
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Hi ladies. I hope you all had a wonderful Thanksgiving day. My day was a good one spent with friends and family and lots and lots of food. By the time we got home I was in a lot of pain though. Thank you all for your responses to my post. KiwiCatMom, what you describe sounds the most like what I am feeling. The only difference is there is a huge lump in the spot where I am hurting in the back of my pelvis. I have had a bone scan and an MRI to check my leg and pelvis. The met in my femur is stable and Rod and screw are in place. I do believe that I have pain side effects from the Femara as my hands and feet are always sore when I wake up in the morning and it takes me time to get them moving. LindaE54, I hope you get good tests results. Would they do more rads if the tumor is stable? I mean would they do that to help with pain? If that is what you mean I will def call my rad doc...he was amazing! DLb823, thank you for responding. I have come to terms with the fact that I am going to have to be my own advocate concerning this. I intend to explore every avenue. Exbrnxgrl, thank you! I have a call in to a pain management doc and also looking at acupuncture. My surgeon wants to see me so he can do a hands on exam to see better what I am feeling. I see him Tuesday. I feel so guilty that I haven't been on here. I was just feeling pretty good and got back to my busy normal life. I do think of the people on here often and peek in every once in a while. Love to u all!
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No money spending spree or jewelry buying here, Dune, but I sure use my special china and other nicer things a lot more often. I am also much quicker to treat myself to little food delecacies and things like that. My prespective has totally changed from saving those things for special occasions, to making every day as special as possible.
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No spending spree here either, but like DLB, I am using all my stuff that I've been saving "for good" And I buy things like fresh raspberries even though they are out of season & crazy priced, but I love them, so I'm having them. DH & I have also decided that we are going to spend our $ a bit more. We scrimped & saved so we could have a good rainy day fund & retire early and as he says "it's pouring!" We rarely ever went out for dinner, now we go at least a couple of times a month. I know, craziness!
Dune, my friend though, who is stage IV colon cancer, she went on a spending spree shortly after her diagnosis. She has tapered off a bit now & she regrets buying all the clothes that she did. She doesn't fit into most of them now, so she has given them away.
Cheers to all! Dee
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help inv2 weeks the anniversary of my diagnosis will be here. Sadly it is also the day my mom goes in for a biopsy for renal cancer. For 4 years i have been NED and for 4 years all i have celt is guilt about it. Why me? I dont have kids i dont have a partner i feel like it was a mistAke i dont deserve to be here when kids loose moms and people lose partners why did i get this outcome that so few get? And how do i even deal with it. How do you date when at any moment it can all come back? Im sorry i know i am being a jerk. I sbould be celebrating my gift and not whinging. I just dont know what to do anymore and i have started down a road of not taking care of myself. I've missed my xgeva and appointments i skipped my pet till i was almost a year over due. I know it's not right to@abuse my chance.
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