Bone Mets Thread
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Hey Annie...I'm originally from St. Catharines and Welland...
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You're sure going through a lot right now, Skylotus! Hopefully there's light at the end of the tunnel, and all the treatment will equal a huge improvement in how you feel. I'm sorry about losing your hair, but I love Terre's suggestion. When I lost mine in 2008, I actually found a wig that was a much better color for me than the blond I was doing at the time -- much warmer and did wonders for my chemo-sallow skin tone. Hopefully, you'll find a similar silver lining in the whole hair loss thing.
Tracey, what you're experiencing with your arm does sound like it needs to be checked out, as Caryn wisely suggested, especially since it's getting worse. If you're not comfortable going to a doc there, perhaps you could call & email photos to your onc @ home? Either way, please let us know what you find out.
Hindsfeet, I know you've also been through some really grueling tx. When will you get scanned again?
Big (((Hugs))) to all ~ Deanna
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Hindsfeet,
Seeding is highly theoretical. The more likely pathway of spread is through the bloodstream if you are node negative, or was already in a node that wasn't tested. It is really difficult to say "if they found it earlier", as there is no way , at present, to find cells that have metastasized until they have already taken hold. That is the frustrating part for all of us (among many other frustrations).
Caryn
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To be fair, Caryn, a !of of things associated with this are theoretical. Some of us got an all clear on our blood work, too, but here it is somewhere else! There are more questions and theories than definitive answers when it comes to cancer.
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Hi Skylotus, so sorry to hear about all the challenges you are currently facing. As Deanna said hopefully your current treatment will have a huge improvement on how you are feeling. I am sending positive healing thoughts your way!
Milaandra I cant believe you lived in St. Catharines and Welland! I was born and raised in Welland. I worked most of my life in St. Catharines. Wow what brought you to Scotland? We have family in England and hope to be able to vacation there in the spring. I didnt think anyone knew where Welland was
. Hindsfeet when I asked my onco about going from Stage 1 to Stage IV he said they do their best in the staging of these cancers but that sometimes the cancer is like a wolf in sheeps clothing. It may appear like it's going to act one way but then change. My breast cancer was said to be a favorable one to have. Two oncologists told me this. Yet just two years later here I am at Stage IV. He also said it can travel through the mammary glands and go undetected
It's so confusing to understand. I am trying to not stress myself trying to figure it out but it is hard sometimes.Terre I noticed in an earlier post you've been through quite a journey yourself and nice to see you are doing well. Your words are always so encouraging, thank you
Deanna I can't believe how much you have been through as well and you are always so positive and encouraging to others. What amazing women!
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I've only heard of "seeding" to describe the theory of bc cells being relocated from a primary tumor to other parts of the breast via a needle biopsy -- something my UCLA BS assured me in 2008 she'd never seen. But here's an 2011 article from the NHI about seeding, and surprisingly (at least to me), it doesn't say it's impossible -- just unlikely, but with a caveat about watching for it as a potential complication. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC34737...
But even more interesting, is this article I just found from the NCI on what they're calling self-seeding. This phenomena was explained to me when I had rads -- that bc cells like to return to where they started, which is what RT is suppose to prevent. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC34737...
I've always thought of "seeding" as fear hype by alternative zealots. But these two articles make it sound like there may be more to it. Deanna
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Thanks, Deanna. I think that's what I was alluding to. It's still rather unlikely and I think something we don't need to fret about or blame. There's a good article on seeding somewhere here on bco.
Edited to add link:
http://community.breastcancer.org/blog/what-my-pat...
This deals with seeding via a biopsy track but could be generalized to any invasive procedure near the cancer. I would hate for women to avoid biopsies or needed surgery based on the something with a virtually non-existent possibility .
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Jumping back to an earlier question about the cost of MRI vs. CT, etc... I was just looking at my CIGNA claims, and it looks like MRI is pricier than CTs. It also probably depends on where you have it done (of course), exactly what areas they scan (may not be identical in each instance), and if contrast in involved. Some of my charges are listed as two separate amounts, and I'm not sure if that's w/out & w/contrast, or because it was two different areas (thoracic and pelvic).
Anyway... Local CT (a really bad experience, by the way) $2267. CT @ UCLA $4490. MRI @ UCLA $6514.
I was just surprised that the MRI was actually the most expensive, especially since it seemed like the faster, easier procedure to me. Deanna
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Deanna thanks for the interesting article on "seeding". I felt very concerned about this after I had multiple biopsies on my breast after the MRI which showed extensive DCIS. The doctor assured me there was no possibility of it causing a cancer cell to escape and plant itself somewhere else. However a nutritionist I was working with at the time told me otherwise. I felt so confused I didn't know who to listen to. I believe this would have happened regardless of the biopsies and I cant go back and change it so I can only go forward.
exbrnxgrl that was a very interesting article you added to your post!
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To start, I'm told my recent stage iv dx is from the breast cancer I had a few years ago. I have no doubt that my stage iv is caused by seeding. They did a punch biopsy removing 2 C of IDC and leaving 1 C of the tumor. In the place where they removed 2 C biopsy( for a few months) before the mastectomy there was a blood clot or seroma. They were not concerned and said their was no vascular around the tumor. I asked then why the blood clot? Where did it come from. After the final surgery biopsy no nodes involved and they said no vascular. They staged me 1a because no mammary nodes involved that were removed or evidence of spread. I had a clear PET scan. My oncologist and surgeon saw no evidence of further disease. I believe that after the biopsy the blood from the biopsy tumor cut went below under the sternum. It could not remain with the original tumor because it was removed. I complained of the pressure under the sternum for a couple of years. I had a bone scan done a year earlier and it was said to be arthritis not cancer. June 12th, I was the one to asked for another PET scan because I felt off, and pressure under the sternum. June 13th, I learned I had several large lymph nodes under the sternum that were filled with cancer, lungs, and liver. Later to find it also went to my brain.
I think listening to your gut is important. I wished I had pushed for a PET scan a year ago when they spent almost 3 hours on a suspicious bone scan. They should have known someone like myself with invasive (even stage 1a) with the her2+ grade 3 should have been further checked. It is water under the bridge. Can't look back, but if I could, I would have not waited for the reconstruction and probably radiated the breast.
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Annie - I missed your question earlier (sorry). I was diagnosed in Feb 2013. Had a painful knee (turned out to be arthritis) and then my hip was hurting. I thought it was because of arthritis, so blew it off. Then tripped over the cat and felt something pop. Hurt like mad so I went to the doc. They sent me to physical therapy. Finally got to see an orthopedic for my knee and mentioned the sore hip. He had it x-rayed and the next thing I knew, I was in the hospital and on crutches. I have a pin in my left femur. It has a small fracture which might be what went pop. But it didn't shatter, which is what was imminent. I had major bone loss in the femur from the cancer, a really bad vertebrae (can't remember which one - the one right behind my belly button), and a rib had a pretty big spot. And lots of little lit up points all over my pelvis, primarily on the right side. I had radiation on the hip, femur, spine, and rib. And Femara every day. Just had a bone scan last month and no evidence of active mets in my bones and I feel pretty good. The new arthritis meds really help; I'm almost pain free, which is huge. The fatigue is a bit of a bummer, but I just sleep a lot and try to work from home at least one day a week so I can sleep in.
Also, my oncotype said <7% chance of recurrence and my blood work was perfect. The first three years, I had quarterly scans (MRI, PET, CT and bone) with no sign of cancer. So who knows where the cancer was lurking and if anything I would have done would have resulted in a different outcome. Too late to worry about what could have been - it takes all my energy to deal with what is and to stay positive about it.
Tracey - I sent you a private message. I had the same thing with my arm after every infusion - phlebitis. If it's in a surface vein, it's treatable with heat packs, but needs to be checked that it's not a blood clot or similar in a deeper vein. http://www.emedicinehealth.com/phlebitis/article_...
Dinner's ready! Hugs to all,
Terre0 -
On seeding: Reading between the lines of the bco article (thanks for the link, exbg), it is virtually impossible for DCIS to seed because it has not gone through the molecular changes necessary to migrate and transplant itself elsewhere. Stage 4 is at the other end of the spectrum where we know some cells are already smart enough to go places and settle. They do this on their own without the help of a needle tracking it. But even those cells that are smart enough to escape the tumor still have a hard time surviving in the bloodstream, according to what I've read about circulating tumor cells. Same with cells that may have escaped as a result of biopsies, I would think.
Tracey, hope you've had a chance to see a doctor.
Kiwicatmom, the fatigue eventually gets better. You've had a lot of energy-zapping rads. It's also harder to feel fully charged with Femara. But I took it for 4.5 years and it kept me NED (and still NED 2 years later), so it's a wonderdrug in my book. My onc switched me to Tamoxifen for 2 years and now I'm back to an AI - Arimidex. I had much more energy with Tamox and no stiffness and joint pains. Now I can feel the AI side effects slowly creeping in. Which arthritis drug are you on?
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Hi Hindsfeet! What an ordeal you've been through! I am trying to understand when you're describing how they did your biopsy what you mean by a punch biopsy and how they removed 2 C of the IDC? It seems like you had a bit of a wait between the biopsy and surgery. I also have a great deal of pressure around the sternum, sometimes making it hard to breathe. However I only just noticed something off there in early spring and that is where my first met was found but I presented with a back ache which led to my first scan. I often feel that perhaps I needed post mastectomy radiation and they said I didn't. My IDC was very close to my sternum, which made biopsy difficult because it was so close to my chest wall. I wonder now if there was something there all along? But like you said we can't look back. I opted for immediate reconstruction and think maybe I should have waited. We can drive ourselves crazy with the what ifs. I'm sending you healing hugs.
Hey Terre! Thanks for answering my questions, and omg you've been through so much but I'm so happy you're feeling almost pain free. Femara is exhausting me too, I used to be a high energy person even with my MS. That's great news you have no evidence of active mets. I am nervous about my next scan. Just feeling achy everywhere and can't make sense of any of it. All of a sudden have hip pain too and my left arm really aches making it hard to use it. I'm trying very hard to stay positive and keep active. Off to physio now, my therapist is great and keeps me positive.
Wishing all of you an awesome day. The sun is trying to come out here, yay!
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Good morning everyone,
I hope today is a better day than yesterday. I was able to see the resort doctor here yesterday and she confirmed it was just what Kiwi Cat Mom said it was.
I was unaware that metastasis could go dormant. My cancer apparently spread 12 years ago and then stopped growing. I had no nodes or vascular involvement and no local recurrence. My mammogram and breast MRI are still clear. My oncologist said he wished he could answer the question of how it sleeps.
I'm amazed at how much an MRI or CT costs. I'm in the Canadian Navy so my medical is paid for - not having to worry about the bills is an enormous blessing. I can't imagine how difficult it must be to bear a financial burden too.
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Hi all!
Good luck with the scan, Annie. I ached from head to toe as well, especially my hips and hands. Part arthritis, part side effects from Femara. Took a bit, but they finally found something that works and I'm nearly pain free. It's the NZ equivalent of Celebrex, I believe. It carries a slight increased risk for heart problems if you take it for several years, so I'm being monitored closely for that, but the oncologist and I agree that it's worth the risk for now as it's made my life so much better.
Compared to others, I haven't been through all that much. And I have free health care for the most part. The arthritis med costs me $70 a month as it's not funded, but most of my meds cost $5.00 for a three month supply and a GP visit is $17.50. Oncologist visits and scans are free. A CT scan here is $700 if you go around the system, which we did for my husband as he was looking at a 25 week wait for a scan before surgery could be scheduled for a hernia. And as Tracey said, it's a blessing not to have to worry about medical bills.
Tracey - I've had clear breast scans all along too and was theoretically "cancer free" for six years. I've seen others on these boards who had recurrence after 10, 12, even 15 years. Heck of a shock! Glad your arm is nothing serious. Heat does help.
Well, I'd best get to work...hugs to all!
Terre
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hello, everyone. Thanks again for the advice and encouragement.
I'm going in to have my ovaries removed on the 16th. It's my first surgery. Has anyone else had this? How was the post-op pain? How long before you could do household tasks? How long were you out of work?
Sorry about all the questions. So glad you all are here.
eve
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NineTwelve- I had one removed due to a ruptured cyst and it had actually attached itself to my appendix. I remember it taking about 4-5 days for me to feel like doing anything. It wasn't particularly painful I just didn't want to do anything to aggravate it. I did stay in the hospital overnight because I have little ones and doc felt like the first 24 hours I needed to be off my feet completely. I would get all your laundry done, vaccum, mop, etc. then you will have plenty of time to heal and not worry about that stuff. By the time it needs it again you will be good!
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NineTwelve, I had my ovaries out a few years ago. If it is laparoscopic (which I am assuming it is - that's the most common way now) then the pain is minimal. They inflate your abdomen with gas during the procedure so a lot of women have pain in their shoulder area afterwards as the gas dissipates but I didn't even have that. You have to remember that even if you don't have a large incision, there's been a lot of disruption inside that needs to heal, so you need to take it easy for a couple of weeks. I wasn't working at the time but the hospital had automatically given me a letter for an employer stating 2 weeks off.
Just don't do what I did. I was feeling OK so I went to a wedding 5 days after the surgery. Bad move. Very bad move. Knocked me flat on my tush.
Good luck with the surgery.
Leah
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NineTwelve I had my ovaries removed last June. As with Leah I had the laparoscopic procedure. Just three tiny incisions but like she said they still move a lot of stuff around inside. I felt great immediately after but within a couple of days felt very tender and just like a nagging pulling sensation on my one side. Kind of felt like you know when you run and then you get a cramp in your side, similar to that. Nothing excruciating but uncomfortable. I agree you need a good 2 weeks! That's when I noticed my discomfort subsided. Just be gentle on yourself and don't rush things, take the time to rest and heal. Best of luck with your upcoming surgery and don't worry you'll be fine! You had asked about household tasks, I was doing dishes and tidying up immediately after but then felt more pain so maybe just best to pace yourself.
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hi all, I might be a little premature here, but I am mini-panicking and as expected, a lot of crappy thoughts are running through my head.
I was diagnosed with IBC in 2008, lymph nodes clear, had a bilateral mastectomy with reconstruction, and tamoxifen...but I stopped it after about three years because of side effects that affected my ability to do my job (specifically, memory loss, for example, where I would call a coworker and by the time she answered couldn't remember what I was calling about, having to write EVERYTHING down just to be able to do the job, etc)
I never had chemo or radiation because I was part of a study that randomized the participants and I was placed into the group that received tamoxifen only...
I felt fine until a few months ago when I began having bad shoulder and hip pain....X-ray and MRI suggest likely mets (or less likely chondrosarcoma, or Paget's disease).
I have a pet scan tomorrow and will go from there
My question is ... If it does turn out to be mets, what should I expect as far as pain, side effects, generally how will i feel for the next few months.
The reason I ask is because I just spent a buttload of money to get my paralegal certificate and was just about to look for a job.....do you think I should hold off on that? Or do you think I will be able to start a new job and perform up to expectations if my prognosis is what I think it is...
Ugh....thanks for any input and good luck to you all
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First of all, good luck with the scan and here's to hoping it's not mets. If it is mets, how you feel and what you can expect vary widely, depending on your situation and tx. This is my story, but may not be yours. I had rads x15 to my femur met and have been on an AI ever since (3yrs). I had no pain from the bone met but do have the typical joint pain/stiffness from the AI which I manage with being active and OTC meds. I went back to work after a brief medical leave and still work full time as an elementary school teacher. Thinking of you.
PS: I never had chemo either.
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Just came from my last PT and first xgeva injection. Feeling OK. It's a pretty day here with blue sky, poofy clouds, and amber/orange fields. Best wishes to all. I hope you are having a good day.
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Good luck with the PetScan, MOOSAN! Fingers crossed it's something other than mets!!! As Caryn said, there's a wide range of situations amongst us, and it's difficult to predict how anyone's case will unfold, although many here work full time. Hormonals are normally the initial drug(s) of choice for bone mets, so probably easier to maintain a normal routine than it might be if chemo was involved. And congrats on getting your paralegal certificate! That's quite an accomplishment. I don't think I'd hold off on looking for a job. Unless legal is different from other fields, it may take awhile anyway, so I'd probably at least get the ball rolling. You may also want to check out a thread entitled, "If you are not Stage IV but have questions..." Lots of helpful input there.
Dune, YaY for the end of P/T!! And please keep us posted on how you do with Xgeva. I'm especially interested because I'm slated to start it next month, when my mouth is healed and after I do one more cleaning & dental check. Deanna
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Some very cool info/research:
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Thank you, annieoakley and Leah S. Thanks to your input, I decided to request two weeks off from work (instead of 1) for my oophorectomy. Better safe than sorry.
I hope everyone else is doing well, and feeling the power of life in the moment. It truly is amazing that we are here and it is now!
eve
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Ladies, I need some information. I just got back from the orthopaedic surgeon, and very soon I'll be getting my lumbar pinned. It seems that the cancer has eaten through the wall in a couple of places, so I'm not a candidate for the bone cement. Has anyone had this type of surgery? I have so many questions, but, as usual, when they tell me something like that, I can't think properly. The surgeon also said that radiation (which they will end up doing on the big lumbar tumour, as well as a little one in the thorasic) could be harder to recover from than surgery. Who has had similar rads and can tell me about that?
I had been really hoping to avoid this...I have no pain, so it's hard to get my head around the fact that half my vertebrae has been eaten away.
He'll be scheduling me for an MRI...he's looking for more. He says that according to the CT scan, the vertebrae above and below this lumbar 4 seem fine. I don't think he believes that...
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Hey NineTwelve glad to hear you requested the two weeks off of work. I think you did the right thing. It's more important for you to heal properly and not rush back to work. I'll be thinking of you on the 16th and sending positive thoughts your way
MOOSAN best of luck on your scan and praying it is not mets! I admire the women on these boards who are continuing to work through the challenges of Stage IV. Everyone is different as far as how they can function with their bone mets. Congrats on getting your paralegal certificate and I would follow your plans to look for a new job. Best of luck to you!
Milaandra I can't answer your questions as I'm just newly diagnosed and haven't even had rads done to any of my mets as of yet. It's amazing you're not feeling pain in that area so ya I guess it would be hard to wrap your head around it. I hope someone here can answer your questions but I want to wish you all the best.
Hugs to all
Annie
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Millandra - I haven't had any surgery to my spine, but did have radiation. It was quite different than the radiation I had during my Stage 1; this was only five treatments as compared to 38 previously. No skin burns, which was great (I tend to sunburn like crazy). I can't remember exactly which one, but I want to say L3 or L1 which was affected. Basically the vertebrae right behind my belly button, like one down from my waist. Anyway....the first one was awful and funny at the same time. I had the treatment, then drove home (about 90 minutes). About 50 minutes into the drive, I was feeling a little queasy. So when I got home, I mentioned this to my hubby, who promptly put a bucket in the living room "just in case." I hopped onto an international conference call - the first one with a new huge client (I am an engineering consultant) and we were supposed to be at our best and wow this new client.
About 5 minutes into the call, the nausea hit full tilt. I hit speaker and mute on the phone and threw up into the bucket. Felt much better. Back onto the call just in time to answer a question. About 5 minutes later...repeat above. And again. And again. I threw up off and on for about an hour - pretty much through most of the conference call. However, the client never suspected anything was amiss - the universe smiled upon me and the only time I had to answer questions was between rounds of throwing up.
At any rate, they had warned me of "possible nausea" but this was a bit more than I expected. The next four rounds of radiation weren't anywhere near that bad - just a bit of queasyness and I'd take an anti-nausea pill before hand and all was well. The biggest side effect was the fatigue; it was about 6 or 8 weeks before I was back to normal. So I'm guessing when your doc says the radiation will be harder to recover from, he's probably talking about the somewhat long-term fatigue.
Best of luck with it all!
Terre
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KiwiCatMom- That's exactly what it did to me! They also told me nausea/vomiting might happen. I had to get dissolvable zofran tablets. It was awful!! I didn't enjoy radiation one single bit.
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kiwicatmom... Clearly, you rock! Taking care of business!
Well, the doctors office called and said that I have a tumor on my lumbar spine that's compressing the cord, as well as areas of concern on my bilateral hips, proximal femur and breastbone.
The good news is that my organs seemed clear.
Strangely, the whole problem that started this was really bad shoulder pain, but there was no mention of my shoulder! She was pretty focused on dealing with the spine tumor which I guess is to be expected.
They put me on steroids ASAP to shrink the tumor and I have to go for another MRI ASAP.
So, we shall see.
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