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Bone mets - please join in

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Re: Bone mets - please join in

Thanks for the advice and tips FF.

I started running about 8 weeks ago so I’m hoping this helps. It’s an nhs thing called couch to 5k. I can manage about half an hour running every other day now. I started this before my secondary diagnosis just to get a bit fitter. Who’d of known how important it would turn out to be.

I’m feeling optimistic about the meds, improvements at 6 months would be wonderful. Maybe I’d be eligible for surgery then.
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Feel the Fear, I was on letrozole/palbociclib for 21 months. My first scan at 3 months was stable. The second scan at the 6 month mark showed lots of improvement. Letrozole killed my knees with pain. Palbociclib made my leg muscles weak. I had some friends this happened to, too. I would suggest doing some leg strengthening exercises. My legs have gained some strength back, but not all. This combo worked 21 months for me. FF

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You are welcome. I was hoping you would log back in soon. I wanted to ease your mind some! FF

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Ahh FF, you’ve got no idea how you’ve brought me to my senses. That’s exactly what I needed to hear. I thought you were her positive as well.
Thank you so much for letting me know. 😀

I think my oncologist was referring to me being able to have herceptin if I’d been positive.
You’re obviously doing very well without it. Especially with your recent good news.
Thanks again FF. I might get my appetite back enough to have a late lunch now. 👍
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Feel the Fear, I was told ER+, PR+ and HER 2- is the least aggressive. Then ER+, PR -, HER2-.

 

I was told I was ER+, PR- and HER2-.  Then my new oncologist wrote on a letter I needed that I was PR+. I questioned her about it and she said that there was no difference in treatment and that being PR+ would actually be better. Lol still never gave me an answer on it. 

 

I have had mets for almost 13 years and I am HER 2 negative!!!

 

FF

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Thanks for the support ladies.
Annie, it’s brilliant that your mets are shrinking.
I would love to have surgery at some point. My biggest lesion is just over 1cm. My oncologist said it was over 2 but the radiologist said no, much smaller. I have 7 or 8 in total. Most are that small they’re barely visible.

Oncologist wants me to try these meds before considering surgery. I noticed looking at my scan that there’s one lesion quite close to a portal vein. 😳 that’s giving me sleepless nights.
I think I just need to give my head a shake. I’m usually so positive. I’ve even cried on the phone to my Mam this afternoon and now I feel terribly guilty, she’ll be worried sick. 🙄
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Ftf, sorry it wasn't the news you wanted. Try to focus on the positive- you may be her-neg, but you are still er+, which from what I've read is probably the most important element in terms of possible treatments. Totally understand your wobble, I have them frequently and they come in every shape and size! Sending hugs and best wishes for when you start treatment.xx
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FTf ,

 

fingers crossed for the ibrance, seems to be getting really good resultsxx Sorry I have no real knowledge of herceptin, but Ibrance hopefully will work well for you.

 

Moijan

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Hi Feelthefear, how awful for you. I really sympathise with your situation. My secondaries are in both lungs, and I am on Letrozole and Palbociclib, and have been for over a year. The good news is that I have responded well to this regime and my tumours have shrunk. So..yay me, and hopefully....yay you! I have a friend who had a 7 cms liver met, and on this same regime it is now reduced and she is on the surgery list. I hope that these two examples give you a bit of a lift. 

My wonderful Onco does not place undue importance on receptors , but looks at other indicators as well. His reasoning is that it gives rise to anxiety, and so long as other blood markers are good ( neuts, white blood, bone marrow) and I feel 'well in myself' we just mosey on. At the moment I am very happy with this and my motto is to never ask a question I don't want the answer to! But blinkered, perhaps, but it is a coping strategy that has worked well for me so far. 

Wishing you every bit of good luck. 🍀🍀🍀. X

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Afternoon ladies.
My oncologist just rang with my biopsy results as they weren’t ready for my Friday appointment.
The receptors haven’t changed since my original diagnosis. So the liver bc is oestrogen positive, her negative. My oncologist said it was worth testing to see if the her had changed to positive. He said this would be the best outcome.

Now I’m absolutely devastated that I’m still her negative. I don’t know whether I’m just looking in the wrong places, but everyone past the 10 year mark seems to be her positive. I’ve totally wiped myself out. I’m having a proper wobble, I wasn’t expecting to react like this. 😳
I started letrozole on Friday and he’s starting me on palbociclib on Monday instead of Friday as originally planned.
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hi riversidedawn,

 

I'm a newbie to the forum but 3+ years in with bone mets.

 

My oncologist has said he'll only give me a CTscan torso once a year & I'm emotionally troubled by this; especially knowing that many of us are asymptomatic when new mets are found....sorry to go on.....bee in bonnet!! x

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Hi ladies, I haven't been on for a while. I switched off notifications as can't keep up with all the messages taking over my life!!!

 

A little good news story for you, especially those struggling. I was diagnosed with bone mets Christmas 2017 and have been on Palbociclib / Letrazole plus Zometa and Zoladex since January.

 

Had my first 3 month MRI scan end of March which showed reduction in all three tumours (vertebra, sacrum and pubic bone) and the larger vetebra one has started to re-build itself. 

 

Well, just had the results from my 6 month MRI which shows stable although there is some activity, but no growth and no new tumours. 

 

It is really reassuring to have these regular scans as it makes the stress of living with the diagnosis and hardship of the side effects so worthwhile. x

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I certainly felt better when I had a treatment plan in place. I was diagnosed in March breast lymph nodes and bones all at the same time. No surgery.Zometa Anastrozole Ibrance and Calcium tablets. First scan was a few weeks ago results on August 6th (delay my fault as I’m away). Feel fine so far and breast pump seem to have all but disappeared. I know it’s hard to believe in those horrible early days but most of the time I accept the situation. I imagine we all have pit moments. I think it’s also important to like and trust your team. I love mine but I can really understand why you’d swap if you didn’t. It does seem that treatment varies. We’re all treated as individuals. Best wishes to everyone coping with all this. We’ve been in Devon for a week - baking hot! We’ve had a lovely time but we are a little worries about how our garden will be when we get home. We left it in the hands of our son!
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Hi Zana

Sorry you have to find yourself in the place no one wants to be but you have come to the right place for advice and support. We have all experienced that absolute shock you get when you are told you have secondary BC (or mets as we tend to call it) so we all understand how you are feeling right now. The main advice would be don’t Google anything! Statistics will be out of date and there’s a lot of info out there that is also out of date. I have had bone mets for over 10 years now and I don’t think any statistic has been changed in that time despite new treatments being used. 

Bone mets are usually treated with a bone strengthener which can be an injection (Denosumab) or intravenous (IV) such as zometa and occasionallytablet form. You will then also have another treatment based on what type of BC your primary was and this will generally be systemic ie it will treat any areas of BC in your body which is why the operation to remove your lymph nodes is not taking place right now. This could be hormone treatment or chemo or Herceptin depending on what your primary was.

Good luck with your appointment tomorrow and feel free to ask any questions you might have on here, there will always be someone who can help. Also, once you do get a treatment plan in place you will hopefully feel more able to cope as it does make you feel something is being done whereas when you are left in limbo not knowing it preys on your mind.

Nicky x

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Silver, Your forever home sounds fantastic. I love my hubby but some days I wish we could have three homes. Mine nice and tidy. His could be a typical messy man cave which I will stay out of! Then a house we share. I've often wished on our property that we could have our main house and then a little place for each of us. I better play the lottery. We needed rain too, but 10 days in a row is a lot. The trees and plants look happy again, after the rain. FF

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Zana..was sorry to hear your news..what a shock!

 

my primary was diag in 2001 and I had 12/13 lymph nodes involved, which they removed. I then got an infection around my breast implant and ended up with lymphoedema.....I’m thinking that maybe in your case they think it’s less traumatic to treat wholeistically..I have noticed practice has changed during the years since my intitial treatment...

 

when you see see them again you could ask them to explain whyxx

 

my bc mets were found in 2013 to liver and bones...I have it in my spine, pelvis and ribs...but have Zometa, which they tell me is keeping the bones stable.

 

love and best wishes

 

Moijan💚

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hi tatyana,

 

I'm literally turning green with envy!!! I'm losing plants and tis' breaking my heart. My garden is my pride and joy!

 

'They' keep dangling the proverbial carrot in saying its going to rain 'today' and not one drop of the wet stuff!!! I really miss the rain....for emotional reasons, too.....can't believe this heat wave!!! Bizarre!!!

 

wishing u a relaxing Sunday..xx

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Silver, I don't want to make you jealous, but we had some proper rain on Friday. The garden just loved it!
Ff, please send us some of your rain, you don't want it but we do! I hope you get some sun for your beach trip.
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hello dear funny face,

 

My 'forever' garden is in my 'forever' home.....its my turn of phrase......after my divorce, I went a-searching for a tiny bit of England to call my forever home.........its mine till the end of my time.....just a turn of phrase....

 

Did i hear the word 'rain'......nae one drop here...its upsetting me!!...boo hoo ...hugs...oo

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Ok I have to ask. What is a forever garden? I'm guessing a perennial garden. Lol if it is mine is basically dead. It did well for many years and last year wasn't doing well. This year up popped a ton of gristle in it.I had to pull them out with leather gloves. Two were is later they were back. Same process and now they are back again. Decided to just chop it all off. This is right against the front of my house. I figure next year I will have to rip it all out. Might turn into two bushes and some potted plants. 

 

Raining here for the next 10 days. I was supposed to go to the beach this week. Quite bummed my only time this year at the beach and its going to rain for it. 2018 hasn't been cooperative for having fun! 

 

FF

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Hi Zana,

 

Sorry to hear your recent news. 3 years plus ago, at Dx, they found mets in my lymph nodes so axilliary clearance and a week later mets on both hips.......hang on in there....hugs..

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Hi Zana,
Sorry you've had this diagnosis so soon after your lumpectomy, you must be feeling really battered. You've come to the right place, if you browse through the recent posts on this thread you'll find some really encouraging stories.
I can't help you myself specifically about bone Mets, as mine are in lymph nodes, lungs, etc but none diagnosed in bones yet (doesn't mean they ain't there!). But the people here are very welcoming and supportive no matter what your particular diagnosis is. One thing I've learned is that we're all different and none of us is a statistic, so try to ignore statistics and concentrate on you as an individual.
I hope you'll feel better when you've seen the team, it does get easier when there's a plan. Best of luck and big hugs!
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hi ramade,

 

Thx for answering. I'd never heard of this particular type of mets. before. I guess 'it' showed up on a CT......thinking of you till you wait for the 8th. Waiting is just 'horrid'!!! 

Hugs to you, too,

silver...xx

 

Hoping you have family & friends around you.....x

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Hi Silv, well soft tissue cancer is when it's not in an organ but just loads floating around. mine is in my neck and chest. Don't know what they're going to try next but will find out on the 8th August.

hugs to you

Ramade xx

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Forgot to say I Had the original lump removed less than 3 months ago and was due to go back in and get a full lymph node removal, but they have now said I don’t need it after finding the bone met? Don’t know what treatment I’m going onto as yet, will find that out on Tuesday when I meant the specialist team.

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Hi I don’t know if I’m posting this in the right place, but I have just been told yesterday that I have bone mets in my spine and that I can’t be cured that they can only treat me and buy me as much time as possible. I’m assuming there are people on here that have been living with bone mets for years, would be good to know how long you guys have had this to give me some sort of hope moving forward, 

thank you x

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Sarah, That put a smile on my face! Fantastic that you feel good! FF

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I'm feeling great thanks just got back from 3 weeks travelling Europe in our camper😊. Just on letrozole and denosumab atm scan results in couple of weeks x
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Sarah, How are you feeling? How's treatment going? I'm happy you found some comfort in our stories. We never know how this will play out, but we all need some hope! Believe me I searched and searched for positive stories when I was diagnosed. Hugs, FF

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Great news ff - you give me such hope and inspiration. I remember looking at yours and nickys posts when I was first diagnosed with secondaries and after a nurse (she worked in breast clinic but was not a specialist breast nurse!) saying to me "you might be offered a bit of palliative chemo but lots of ladies decide not too as side effects not worth it"!!!! I thought that's it then until I came on here and read your stories
Ramade I'm so sorry your having a tough time chemo is so gruelling and so hard when there is no change how manyou sessions have you got left?
Sarah x
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hi tatyana,

 

Ditto....I empathise completely in that my 'forever' garden is a very young one, too. Rain was promised today and we have had about 2 minutes worth so far in! I'm genuinely missing the rain...never ever thought I'd say this; in this country!!! Its all rather 'odd'......

 

All good wishes,

silver xx

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Silver, I can sympathize with you about the garden- isn't it horrendous! Ours is quite small, but a large proportion of the plants are not long established, the previous owners didn't really do gardening so we've spent four years planting stuff and I really love it now. But it's so hard for newish plants to survive in this weather. We water what we can, using lots of recycled washing-up water, but we can't get round all of them. You try your best, then suddenly notice yet another plant with crinkly leaves.
Why won't it just RAIN?!!
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Ramade, I'm sorry you didn't get better results! We all want it to get smaller! Most of my treatments  would shrink mine a tiny bit. Mine was stable which = no changes for 5 years on vinorelbine. Are you staying on the treatment? FF

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Hi ramade,

 

I'm a lil' bemused. What is soft tissue....liver?? 

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dear ff i am so pleased for you i can't tell you. fantastic news,well done,

i haven't posted for ages,trying to get through 6 months of hellish chemo,result no change. it seems they aren't too worried about bones these days which might be interesing to some. i have chemo in the soft tissue which they do seem worried about but can't find any info on it, anyone??

anyway once again so pleased for you.

;ove and hugs

Ramade

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Hello dear Nicky.Smiley Happy

 

Many thx for your highly informative post...very much appreciated. Sometimes, I feel like I'm 'flying' in the dark! What is Fulvestrant? I'm on letrozole & Denosumab injections.

 

When I asked my oncologist to explain the pathological breakdown of my biopsies, he said that I did not need to worry about all that!!

 

I'm a divorcee & I live on my ownsome...thank goodness for my Mcmillan befriender. I did not find him till the initial blast of chemo. & radio. were over; more's the pity.

 

My body does not like the heat so I'm finding this heat wave very hard but I've gr8 fans!!

 

I love my forever garden to pieces and I'm now losing plants...Boo hoo!! (grumpy ol' woman...te, he, he.....)

With all good wishes ,

silver xx

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Thanks girls! Please know that I'm not naive about this. I don't think I could ever go back to thinking it is gone forever. As much as I would love to think that I could never have that trust. I just plan on enjoying it for the moment. Hugs, FF

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Hi silver - glad to be of help and I'm happy to share as much as I do, I keep a few things back especially any real identifiers to who I am and my family - hence no photo - ever!

I'm currently on Fulvestrant and Denosumab, both injections (not IV) every 4 weeks. I'm strongly ER and PR positive, and, for now at least HER2-

I can't explain what happens to bone mets - you might need to read up on it as I'd get it wrong. But basically bone is a living part of us, it grows and it dies. Its this mechanism and status quo that cancer disrupts.  The bone strengthening treatments are there to do just that - strengthen the bones, but they also stop the cancer from attacking the bones even more. So the damage is still there and therefore there can be weak points, which often cause pain, and therefore the areas affected will show up on CT scans, MRI scans and of course bone scans.  My hosptial only uses bone scans for diagnosis so I have only had one back in 2008 when I had one hot spot and one spot on my upper spine.  Because the bone mets went on the rampage in 2013 (when I wasnt getting regular scans) I now know they are all over or 'extensive' as my reports say.  However they have all been stable since 2013.  I know roughly where they are as places such as the ribs are tender to press, so I know they are there!

My CT scan is just the normal one, no extra passes, I believe all soft tissue and bone mets (and node enlargement) will be picked up over a certain size (MRI scans are more accurate and pick up smaller lesions as well) but I dont think they can pick up skin mets but as I dont have them I dont actually know.  Our CT scanners at the hosptial I have treatment at are pretty new and hi tech whereas maybe some of the older ones in other hospitals are not so accurate hence the need for other scans?

As to the heat I'm enjoying it when I can but definitely prefer it to be cooler and breezier! A spot of rain (or a downpour) would be nice so I don';t have to keep watering my plants.

Take Care

Nicky xx

ps Even better news from you FF and thanks for sharing. I think my liver 'witch' has also left the room - for a while at least, no sign of her on the recent CT scan despite setting up home there 5 years ago.  Obviously the surgical knife got her ha ha.  As you have said it all seems a bit unreal when you have had certain mets for years and suddenly they are gone or lying dormant.  However I'm well aware 'she' will be back from her holidays at some point! xx

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Funny face

You are a legend and thanks for sharing your good news ...your oncologist has been a hero over the years. .prescribing the best treatment plans for you.
I saw my new oncologist yesterday and I felt very confident with her ..nothing was too much trouble and I felt in very safe hands whatever the outcome of my scans is going to be !

☺☺☺
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Having a quick dip into the forum but had to post a fantastic WOW to FF!! I think you are an inspiration to many, I'm so happy for your good news, it lifts everyone when this happens! If you can do 13 years and be NED then there is hope for all of us!!

Silver, FFs idea of reporting symptoms so you get a scan....yup, I'd be doing that. As Nicky said, we only have one shot at life and owe it to ourselves to be proactive and well informed. I was too frightened in the early days to do this but it is empowering. I think we have a culture in UK of being so grateful for free treatment that we don't dare question anything! When I started reading the U.S. Inspire website I realised that their patients had much greater knowledge and control over their treatment.......rant over, enjoy the sunshine xx

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Dear Nicky,

 

I can't thank you enough for all your helpful information. I had no idea that bone mets. can be picked up on a CT scan. do they just scan your torso/ more? Which bones of yours' have mets. 10 years in....I take my hat off to you. You sound incredibly upbeat too which is so very heartening.

 

I did not know that bone mets. harden. Does that mean they have stopped growing?

 

What meds. are u on; at the mo'?

 

Your comment about being relatively asymptomatic is the reason 'my' annual scans rattle me. I might well have to be more proactive. 'We' should not have to fight for medical care.It makes it all more challenging & tiresome!

 

A lil' about me...as concise as poss. 2015 diagnosed initially with stage 4...totally asymptomatic...so a shock. Lymph nodes and both hips.So I'm 3 years plus in.

 

Your post was an inspiration to me & I thank u most sincerely......how wonderful to have this forum, to communicate......

 

Are u enjoying our incessant heat wave??

All good wishes,

silver...xx

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To FF,

 

What fantabulous news......Yay!!!

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Funnyface what wonderful news. Long may the witch be dead Wendy x
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Morning ladies.
FF, this is fantastic news. 🍾🎉🥂
You must feel wonderful. I feel great for you. I think when someone shares good news it gives us hope that it could be us next. The witch is dead. 😀😀😀 absolutely brilliant. X

Nicky I’ve only been in this secondary game for a month and already see how I’ve had to start educating myself. Through reading this and other forums, reading peer papers, googling my head off etc etc. It’s like a full time job.
I go to oncology appointments with a list of suggestions. I must say he’s never brushed me off and has even sought funding for a special dna test I’ve requested.

The biopsy went great. Yes, it felt a bit odd, but not particularly painful. Apparently I was their best patient. 😂
Three samples were taken. I asked the doctor to take as much as possible and he said he would. It turns out the biggest lesion is just over 1cm, not 2. In fact he said there was very little liver affected, but that size doesn’t really matter it’s how the cancer is affecting the surrounding tissue?

Nicky, it’s so good to hear you say soft tissue can become NED. I have one lesion that is quite close to a portal vein. 😳 I’m really worried that one. I wish I could just have it cut out before it gets the chance to grow.
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FF, this is wonderful! I am so glad you felt you could share it with us. I appreciate your sensitivity to others' feelings,but personally I just love getting good news from anyone, it gives me great joy!
Yes we all know that the Alien could spring back to life some time in the future, but that's then, this is now! Ding dong!🔔🔔🔔 Love and hugs!
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OK ladies! I'm never sure when to post good news. It always seems just as you are ready to post something positive that others are having a difficult time. In my journey I've had quite a few really rough patches. I don't know what to think of things going on with me and don't want to get to excited. Last week I went for my scan and then the oncologist appointment to be told I was stable. She then told me I had one lymph node in the collar bone area that had enlarged but it might not be from cancer. She also told me that I had more "opacity" in my lungs but that she thought that my cancer might be dead and that it's dead cells. I'm quite in shock and wonder after 13 years how this might happen and if it could. For the first time ever she decided to do tumor markers. She said in the past they were thought to be very unreliable but that opinion is changing. I called to get the results of these. The nurse called me and told me what they were. The CA15.3 is normal under 30. Mine was 10. The CA27.29 is normal under 38. Mine was 23. I did a little reading on markers and you can get a low false reading of the CA15.3 if you are on afinitor (evermolimus) which I am on. I really wish the oncologist would have called and told me what she is now thinking. I'm curious if she will do tumor markers again when I go back in 4 months. She also didn't say anything about stopping treatment. I've decided for the next 4 months to allow myself to enjoy and think the cancer is DEAD or dormant! I'm not crazy, I know it could rise up again. I will continue with treatments to keep it at bay. I've only told my family and all of you. I'm not ready for others to know of the possibility. Ding dong the witch is dead for now! FF

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Hi silver

I had bone mets in 2008, no real symptoms other than a very dull ache when I was out jogging. It was a routine/follow up mammogram that found a local recurrence (of my primary) and a subsequent CT showed up the bone mets.  5 years after that (I'd been on hormone treatment after having chemo for the recurrence and bone mets) I again had an ache, this time in my thigh/hip. I put it down to a change in job where I needed to sit still for several hours whereas I had been more mobile before. An Xray showed nothing unusual so I asked for a CT. This picked up more extensive bone mets (hence the ache) and also liver mets.  During the time I had been stable my scans had been pushed out from 3 monthly to 6 monthly and eventually yearly as neither my onc at the time or I felt the need to have them more often.  Thats why I'd push for a scan sooner than your onc is saying because if I had had a scan sooner my bone mets wouldnt have been so extensive although I would have expected to have got liver mets at some point.  My bone mets (as with everyones) don't heal as such, they just schlerose ie harden, so the damage is done and can't be reversed whereas soft tissue mets such as liver can become NED ie No Evidence of Disease.

My biopsies were only carried out because I asked for them as I had learnt from this forum that BC can change receptor status.  Mine did seem to change receptor status but the liver lesion that had been biopsied both times (it was the largest and most accessible) was actually quite a mixed bag as I found out after it was recently removed when I had my liver resection.  I always referred to it as my 'rogue' lesion and I was absolutely right, it turned out to be triple negative whereas all my other mets are hormone positive, HER2 negative (as my primary and local recurrence both were).  I have been pretty asymptomatic the whole 10 or so years I've been living with SBC so I don't quite get it when the oncologists say that the patient will know!  Unless he or I have a crystal ball I can't see how that is the case without a detailed scan. I don't have tumour markers done although I do see the sense in them if your particular markers are affected by what your cancer is doing - not everyone's will.

I have only learnt everything I know about SBC from being on this forum and then using the internet if I have to find out more information, none of this has been passed onto me by my oncologist/s or nurses.  In fact the other day one of the nurses asked me about something to do with Eribulin!  I have also in the past told my oncologist to read this forum - then they really would know how we feel about scan results, side effects, anxiety, depression, fatigue (the list goes on!!!) rather than just go by what they have learnt or been told.  Grrrrrrr, rant over.  I have also made sure I know everything I possibly can about my current treatment and what will be my most likely next treatment and have challenged my oncologist or sought a second opinion whenever I have not been sure.  We all get only one shot at this life so I'm bl**dy well going to make the most of it and not have some medical professional screw it up for me - don't worry that HAS happened and only by me challenging the decision am I here today.

Bet you're sorry you asked now!!! ;-)

Take care, I am happy to answer any questions that I have experience of but of course these are only my views or what has hapened in my treatment so it doesn't mean its the same for everyone else.

Nicky x

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Silver, I would get another opinion if you can. Also at least at 6 months you could try complaining about symptoms and maybe that would get you a scan. FF