Bone mets - please join in

[joanne130]

Hi,

I don't post very often but just to say I finished 6 cycles of taxotere at the end of may and scan showed it had worked :). Was a little rough and finger nails have taken a battering but I got through it ok overall. Have now started on exemestane, so hope it works forquite a while! However, I seem to have developed a pain in right hip/leg/knee, and although I know this pain started just after starting exemestane (mid July) i'm concerned it could already be progression, any advice would be appreciated.

[belinda]

Yay glad the brain CT was all ok Val. Have fun driving the new car. An all wool rug for £2! And I was thinking whoever bought it for £60 had a bargain.


Seeing my Onc on Thursday. He will receive my tumour markers when I have them taken early this week. I finished Doxorubicin a few weeks ago and I know it was working well mid cycles so I'm really hoping I can now have a chemo break...grow my hair back etc etc! If anyone is offered this chemo I must add I found it ok, no sickness at all and no crashing tiredness. My bloods were always ok by the next cycle.
x

[doodlecat]

Thanks Meg, that is a good point about changing gears as I do have very painfull hands and a dodgy arm. I had an automatic capri many years ago and I loved it.

Off to the footie now in the piuring rain.

June x

[Coco0896]

Good afternoon everyone, Rose was so pleased to hear you had a better day yesterday and its nice to talk to you here too! dawn thank you so much for your words of encouragement and what an inspiration you are, I felt so much better reading what you and Val said and I will carry that with me as I get more used to this over the next few days and weeks, I feel so much better today and ready to kick the a..e of this nuisance in my life. re mobility cars June, I drive an automatic Car now, well it is a dual car a Citroen and I love it I used to and still do spend a great deal of my working life driving and so saves your knees and your hand changing gears, I would not go back to a manual car now!! Xx

[doodlecat]

Val so pleased you have a brain and even better that it is met free.

I was looking (online) today at mobility cars. Automatic might work for us as I am trying to get my husband to learn to drive. At the moment I have to drive myself the 230 mile round trip for treatment.

I believe your profit is 2,900 per cent. Maybe you should get youself a wee job in the cabinet looking after the country's budget!

June x

[scottishlass]

Welcome to ll the new ladies. Yes I remember well just how devasted I was when I found out I had bone mets ten years after my original diagnosis. I did not know a soul who had bone mets and unlike my first diagnosis I was not put in touch with anyone who had bone mets. I didn't "find" the BCC website until a few years later when I was looking up information about something. From that day on I met new friends on here who are now my"old" friends. Too many to name them all but Dawn, Vercors, Belinda above are a few of them. It helps so much be able to talk to people in a similar position who know exactly how you feel and being abe to talk to someone who isn't family is great because we can be really open with each other without upsetting our loved ones.
I have had bone mets for 14 years now. I have them in my spine, ribs thorax and pelvis and recently found out that they are now in my scull too. As for prognosis I was given a 50% chance of surviving 2 years and that was in the year 2000....Baloney!!.....they just do not know and that is the honest truth about it. There are drugs out now that were not around when I got bone mets in 1999.
My latest news is that I went to see a radiologist to discuss radiotherapy for my face as I have mets in my left cheek and this may be causing the numbness I have. But the numness has gone from below my eye and cheek and is now only from my lower lip to my chin. Unfortunately I have osteonecrosis of the jaw in the same area near my cheek so she is reluctant to give me any radiotherapy at the moment and will review me again in Septemeber. I am quite happy with this decision as it is not causing me any discomfort whatsoever and it doesn't stop me from eating drinking or talking!
The good news was from the CT scan is that they did find that I did indeed have a brain....and luckily my brain has no mets as yet. I am feeling really well at the moment. I got a new motobility car on Tuesday. I had a Renault Grand Scenic before but now have a VW Golf automatic. This willtake some getting used to but already it is improving things for me because I do not have to use my left leg for a clutch nor do I need to pull on the handbrake as the car does everything except make me a cafe latte! I love it already and it is smaller but powerful enough to tow my caravan.I am getting a towbar fitted next week. As chemotherapy got in the way for the first part of the year I am looking forward to getting away while I am feeling so good.
I even got back to making food for the family yesterday and although it left me completely exhausted I managed to regain my puff while it was cooking in the oven. It was chicken enchilladas with sour cream on the side and some salad. I made so much there is enough for today too so that is good as I do not feel like cooking again!
My Dad hasn't been well and not allowed to drive just now. He lives across town from me, about 10/12 miles and that means I need to do his grocery shopping for him. I have offered to take him but he says he is happy to stay at home. My younger daughter is moving all her stuff from the house she rented as they have new tenants so my husband has been using the car to move boxes and boxes and boxes....Now I must tell you something funny. Months ago I purchased a large all wool rug from a charity shop for my daughter's house as the colours cream and white matched her suite. I told her just to sell it so she advertised it and sucessfully sold it today for £60 as she needs the money as she has been made redundant from her job. I am smiling because the rug only cost me £2. Now who is a mathematician and can tell me what % profit she made on it! . LOve to all you lovely ladies on the best thread on the BCC site. from Val

[Tylerrose]

Hi ladies I also got the double whammie on first diagnosis, lymph nodes neck and chest bone mets in spine and left hand ribs, but all vital organs clear which was a blessing, had firt treatments Thursday Friday this week still feel fine today no reactions thank goodness chemo hemp x 6 plus herceptin and perjeta , so I'm really feeling home that the treatment will work for me and keep me going for many years to come, Coco keep the faith faith luv and Dawn your journey gives us all hope it's great to read your story l think you're a Trogan and an inspiration to us all, love to all you ladies and keep smiling 🙂 xxxx Rosr

[dawnhc]

Hi Meg,

I'm another one that has been knocking around these forums for some time now! I think you are wise to give up the nursing job - it is very hard when coming to terms with this disease to give yourself to others. You need to concentrate on you and your needs. Like others have said here, at first it is hard to get the thought of cancer out of your mind. I found it was like a spiral going round and round and I couldn't escape the words cancer going round and round in my head but gradually I realised I was going longer and longer without thinking about it. My first diagnosis was way back in 1990 with a gap of 5 years before it returned, but then it was every 18mths - 2 years of recurrences until in 2002 when I was diagnosed with very extensive bone mets. They responded really well to treatment including herceptin when they discovered I was her2+. The response was so good that they couldn't find the ones that peppered my skull when they did the next bone scan! I really thought with the 2ndary dx I had just months to live and every year I am amazed that I am still here. Admittedly now pain is becoming a problem but when I think I am in my 12th year with bone mets I haven't done too badly 🙂 I do feel very cross with oncs that tell their patients they have only months or xx years left. Why not tell patients like some have said above, that they have patients who keep going for years. I hope you are going to be around with us for years to come, encouraging others who come looking for reassurance.
Dawn
xx

[Coco0896]

Hi Lynn good to hear from you, I will not return to my Nursing job as cant cope with taking responsibility of being in Charge of lots of Residents and don't feel I can give any of myself to them now, I know that sounds awful, just being honest. I am continuing with my business which is training, it's what I love to do and can't imagine just sitting around all day, am sure as time goes by I will like you be able to think about other things, but just am not there yet. Am so glad to be able to be here and talk to you all as we are all in similar situations, so thanks for that. Meg xx

[Lynnq]

Hello coco......I also am in a similar position, diagnosed with bone mets and shadows in the peritoneal area soon after initial diagnosis. My Onc told me that 2 -3 years was the official prognosis but that he had ladies in his care who were five years on and still going strong......
no chemo for me either......he said...."maybe sometime down the line should it prove necessary". He put me on LETROZOLE and I have been taking it for eight months now. My last scan showed no spread, my bone mets (they are in upper spine and pelvis) are improved and the peritoneal area is -"almost completely resolved". Very encouraging!
I still have wobbly days but don't think about it all the time anymore ..... I retired one week before my diagnosis (I was devestated all those retirement plans out of the window I thought - but they're not of course. - just altered.) keep very busy and like a lot f retired people I often wonder how I found time to work.

[Coco0896]

Morning all, hope you slept well. I have woken this morning and although this whole situation remains in the forefront of my mind I feel less panicked than I did yesterday. One thing that did make me laugh was that until this change in circumstances I was entitled to no benefits at all then all off a sudden I am entitled to DLA amongst other things, how we are treated differently with a change of a few words! Hope you all have a peaceful day xx

[belinda]

Hi Coco and all, I agree with all the posts above. I remember that first thing on your mind when waking moment too. It does pass and although life can never be the same as it was before diagnosis we do all muddle through and we live with breast cancer, with the emphasis very much on living.
I was diagnosed with bone mets from the start too. I was also given Tamoxifen as my first treatment. I hope it works very well for you.
Have a good weekend all. x

[doodlecat]

Magda, you are correct that feeling on wakening does pass and I didn't explain that. Apologies if that caused any distress. It is not the first thing I think of any more.

June xx

[Magda]

Hi Coco
I too was diagnosed with mets to bones around same time as my initial diagnosis 2 years ago They said they treat this spread as more of a chronic illness nowadays . I'm just back from 3 weeks in Thailand so I'm not letting the b***er stop me doing the things I want to. I too was devastated when told and demanded to know how long had I left but the onc just kept saying we don't know ... You could be here in 10 - 15yrs there is no way of knowing. this awful time will pass and one morning you will wake up and it won't be the first thing you think of and that's the truth? Take strength from wherever you can find it.
Magda

[vercors]

Coco,
When I was diagnosed with secondary over 18 months ago and like many others my world crumble. Just like you I was told a few short years... I regret having asked the question. As the others have said, oncs do not know. Even short temr they don't know. A lady on this site was given two weeks to live before Christmas 2011, she was still with us for another 6 months.
Another saving grace for both you and me is that the mets are "only" in the bone and haven't affected any vital organs. For that I do consider myself very lucky.
I understand how upset you must me. Come back to talk to us, this group helped so much with my sanity.I am still working full time, work that involves travel. I also travel for holidays, so there is can be some of normality in our ives.

Big virual hug.

[doodlecat]

Coca, it is too soon for you to get you head around it. One of the worst thngs for me was on wakening and having that feeling that sonething is wrong and it takes a few seconds to remember. It was like being given the news afresh after every sleep no matter how short that sleep was.

You do get used to it. For me I have coped well. The only time I don't is when my treatment is being messed around and I get very frustrated. I wont lie to you though, for me, it is never out of my mind. It is just avdifferent way of living. Life will never be the same but there are al ot of positives too. Living for the moment and appreciating each good day. A lot of cliches but true (for me anyway).

June x

[Coco0896]

Hi to you Nicky, Katie, June and Mel, thanks so much for your words of support, they mean so much and of course what you say is true but I suppose the news is still raw and feels unreal currently and I will get my head around it in due course and perhaps follow your advice and read the whole of this thread to learn more and be inspired, that will be my goal over the next couple of days. Thanks again xx

[Buffy3]

Coco, just to say I was diagnosed this time last year with the double whammy. I was put on tamoxifen...1st line of treatment but soon ended up on chemo which has blasted the little uggers. I am also back at work and living with this disease. Ok a few aches and pains from the new drugs am on but life is continuing as normal. My onc and breast care nurse see this condition more like a chronic illness...treatable. I am suprised your onc put a time scale on things, mine vaguely said many many years. The treatments are developing all the time and if one fails there are many more in the wings. Take care, the ladies on this forum are amazing and supported me through tough times. It does get easier. Mel xxx

[doodlecat]

Coco, I can't really add to what Katie and Nicky have said.

When I was first diagnosed I was heartbroken and it does take a bit of getting used to. I also read this whole thread there are so many inspiring people.

I only found out what questions to ask about treatment, etc. through everyone on here sharing their experiences and giving advice.

June xx

[Katie2002]

Coco - I am so sorry you have had to join us. I have bone mets in my spine and pelvis. I was dx with secondaries last JUne six months after my primary dx. I can't believe your Onc to be honest! No one can put a time frame on your life. Oncs however great they are - are NOT God! They do not have a crystal ball (I nearly wrote crystal balls!!!). You have to remember that what you have is treatable. Many inspiring ladies on this site have lived with this disease for years. A friend of mine who comes on this thread always says we live with a condition and we just get on with it. That's the way I think of it. I admit to be being lucky so far as I have had no pain so far. My last scans showed that my mets had reduced. Things are possible! I am back at work and enjoying it! What I am trying to say is - try and stay positive. There are lots of treatments and people out there with fantastic inspiring stories. Are you still starting chemo soon? Good luck with it all. Let us know how you get on - and remember there are lots of us out there just getting on with our lives! You aren't alone.
No doubt someone with more experience will be along in a bit too.
Sending you a BIG virtual hug xxx

[nicky08]

Hi to all bone mets ladies and especially those who have had to join in recently. We all understand how devastating that diagnosis of secondaries is so you have come to the right place for support, information and just a place to have a moan if needed.
just to say to all of the newbies, including Coco0896 who has just posted, that the statistics for surviving with bone mets are way out of date and its very difficult to put a number of years to your prognosis - Im surprised your oncologist gave you such and 'accurate' length of time! There are many of us ladies living with bone mets for 5, 10, 15 years after diagnosis and that number is increasing as better treatments become available. From reading some of posts on here you will see that this is the case and also how each treatment can vary depending on your type of BC and also your oncology team so do ask any questions that you are not sure about, one of us is bound to have some sort of answer.
Good luck to all with scan results, treatments etc and hope you are all a bit cooler than yesterday, except possibly for Val where the weather looked not so hot.
Nicky x

[Lucy_BCC]

Dear Coco, I am sorry to read your news and I am sure your fellow users will be along very soon with support and advice for you as you have asked, please also remember that our helpliners are on hand with further support, emotional and practical so do call to talk things through on 0808 800 6000, lines are open 9-5 weekdays and 10-2 Saturdays

The following link will take you to the 'BCC secondaries' pages where there is lots of further support ideas and information which I hope you will find helpful:

http://www.breastcancercare.org.uk/secondaries?utm_source=Homepage&%3Butm_medium=help_you&%3Butm_campaign=secondaries

Take care

Lucy

[Coco0896]

Good Morning Ladies, wonder if you mind me joining in as could really do with some advice and support , until yesterday I presumed I would be in the August group for chemo but sadly this is not to be as Onc told me yesterday that I have secondaries in my bones, in my back and pelvis, I feel like my whole world has fallen apart. He has given me between 2 and 3 years to live which is a shock in itself. I will start on Tamoxifen today and shortly the Denosumab injection. Any advice would be much appreciated. Many thanks xx

[belinda]

Hi zara, I'm sorry to hear about the hip ops. I was diagnosed with bc and bone mets when my right hip spontaneously fractured. I had a hip replacement. I use one crutch for any distance, luckily I'm ok round the house. I 'treated' myself to a black crutch from the cool crutches site. One of the good things is it's a silent crutch, none of the usual loud tapping noise before you see me turn the corner. Hope the letrozol has not caused too much stiffness. I was on Arimidex for a while, with the jabs to stop my periods and had much stiffness at first but it did ease up a little after a while. I expect it was especially hot in Hastings today.. . x

Hi June, I'm sorry to read of your contrast leak, my last CT was a little unusual. The needle came out bent double and the staff had to record it and take pics. Hope the leak has not caused any follow on problems and it's less painful asap..x

Great to read you are in the Stable Mabel club vercors!..x

Happy Anniversary Lucinda, I had many years with Capecitabine, I hope it works really well for you..x

Best wishes Val, hope the rads went well today..x

Hi to all, hope it's a little cooler tomorrow..x

[zara68]

Thank you belinda for replying. A big hello to you as you are a very very lucky person to receive three helpings of hastings delight.
My treatment of letrazole, zoladex and zometa plus two hip ops and radio has greatly improved my life. The cancer has stabilised and i am able to go out and about some afternoons and i am quite good in the evenings. I am a lot better than i was, but I have ended up disabled and needing a wheelchair for distances beond 200m. I also get care three times a day to help me and my son.
How about you?

[vercors]

Absolutely loved the Pilar of the Earth and the eye of the Needle.
Val, I hope radiotherapy sorts you out. How is your dad doing?
June, I hope you don't have to wait for too long to get your results.

[doodlecat]

Vercors, that is excellent news. No point in asking if you enjoyed the book if you are purchasing another Ken Follet for holiday.

Val, thinking of you today. I hope rads went well.

I am just back from latest CT scan. Dye leaked into my arm and I now have an uncofortable swollen arm. They say they got enough dye into the vein to give them a good image.

June

[vercors]

Big hello to everyone who recently joined us. Sorry to hear that so many of you are struggling. I thought I would post my news to give everyone hope.
I had an MRI last week, and I have been stable for about 15 months. On herceptin, letrozole, Zoladex and ibandronic acid since secondary diagnosis in December 2011, 5 years after primary diagnosis.
Just made a few notes on books to download on my kindle. I finished the Pillar of the Earth, yesterday, I think I will take another Ken Follet on holiday.
Take care everyone.

[lucinda]

I have been tied up with hospital appointments and feeling exceptionally tired so have not been on, such a lot seems to have been happening. Mel I actually transferred my treatment to the RM for a second opinion and because I was adamnant that I wanted my growth removed, my lymph nodes had formed into a mass and chemo,rads,hormone therapy had hadly reduced them. Interestingly the surgeon was more willing to operate than the oncs were to the surgery. In the end they said as I was stable the decision was mine to make and i went ahead with surgery. Personally I think it is the best decision I ever made, I felt so much better having that part of the cancer removed from my body. Sadly it did not prevent spread to my liver, but that could have happened anyway and I wanted to do it whilst I was stable.
Sorry so many of you are having problems at the moment and hello to those who have joined us. I need to scroll back and catch up, been feeling really down this week as e/e combo failed (although I have improvement in my spine) and liver mets enlarged so starting capecitabine but need rads to my pelvis first. I also developed a mystery rash on my right breast which spread right up my back. No idea what caused it but antihystermine has reduced it and now just on my right arm. I had hoped to get my dental treatment done before starting cape but just can't fit it in...I was due to have root canal treatment My dentist is so good, he knows my situation and is trying to save as many of my teeth as possible and hopefully preventing the need for exstractions. I had bloods taken today so hopefully ok for denosumab tomorrow and then rads planning Friday. I am absolutely fed up with the site of hospitals. Feel so sorry for my oh who is currently driving me everywhere and spending hours waiting whist I have my treatments. it was our 27th wedding anniversary yesterday so I am taking him out to dinner tonight to say thank you for all his support.
Good luck with your rads Val.

L xx

[doodlecat]

Val, thank you for repling to me that is a huge help. I feel if I am going to question who the referral is with I have to come up with options.

Belinda as I am not stable that is maybe who I am not been offered surgery. So that may be a valid point.

They way I am now looking at my treatment is this though. I live in an island off of Scotland. I am being treated at Raigmore which is a general hospital. I have Invasive Lobular cancer and this represents around ten percent of cancers. I presented at diagnosis (well I presented for many years with what they said were cysts but that's another story) with secondaries. It may well be that they have not a lot of experience of someone with my diagnosis. Maybe worthwhile asking that question.

On the book front I have ordered Khalid Hosseini's new book because I loved his first two. I got it on the kindle app as it was only 99p that way. I much prefer a 'proper' book but it is handy to have some on the kindle for sleepless night reading and not disturbing my husband. I also have two left of Peter May's Lewis Trilogy to read on there. Just need to suplement this with some 'real' books.

[Buffy3]

Hi Belinda, thank you. I am treated at Marsden and they are adamant surgery will only be an option once ive been stable. Am at moment so all being well sept time will have discussion with onc/surgeon and have it removed. Would prefer it gone. Just dont want loads of time out of work again.
Night night xx

[belinda]

Have a lovely time away Mel. When I had my diagnosis, double whammy, it was much more unusual to be offered any surgery, the thinking at that time being the op itself (may) cause spread. Ten years on and (perhaps it's because many of us are living longer due to more treatments being available?) surgery seems to be offered regularly. Because my primary is much smaller and mostly scar tissue I wouldn't want to put myself through an op but I can fully understand why, for some, it's really beneficial and the right choice for them.
Good Luck whatever you decide is best for you...x

[Buffy3]

Posted twice. Honeymoon cruise round the norwegian fjordd

Take care
Mel xxx

[Buffy3]

Hi, I havent posted for a while, am a year on from my double whammy diagnosis and moving onto an extent. EC chemo finished back in feb, have returned to work...full time september and have booked our honeymoon...the one we didnt get last year as I was too poorly and couldnt walk.
Am interested in the discussion about surgery. My onc has said once am stable (the letrazole is working at mo), they have said they may offer me a lumpectomy. I do get confused with all this though as it has spread to my bones, will removing it prevent further spread. I am hoping the chemo has mopped up any naughty stray cells but I just cant get my head round the surgery bit.
I guess psychologically Id like it out but what would be the medical reason? Would removing it prevent further spread or as Belinda said upset the apple cart. I am not due to see my onc until mid sept so will discuss this with her then. Any thoughts would be great.
Have enjoyed reading about the books, going to get gone girl for holiday.

Take care
Mel xxx

[scottishlass]

June have sent you a PM

[doodlecat]

Lynn, that is good to hear you are doing so well. Makes sense to me to have mx. It is not right we have to fight for treatment, though. I find it a bit strange they wanted to give you an implant but not mx. I am really pleased to hear your tumour markers are down and you are happier.

[Lynnq]

Hello. I have been following your posts and after your last post thought that I would tell you my experience. I was diagnosed last October. Initially tbey said lumpectomy because there was no apparent lump or thickening. However they then - after routine biopsies - found enlarged nodes so did more biopsies and I had MRI scan. This showed lobular cancer in the right breast in the right lower quadrant and lymph node involvement. The left breast was clear. They then did a RMx and node clearance and at the same time a reduction on the left breast pending reconstruction. However, and despite the clear MRI scan - after the op when they analysed the tissue taken from my left breast they found lobular cancer there as well - Numerous tumours....the largest only 2mm.....spread throughout my breast like grains of sand. (The surgeons actual words). Not a lump, or a chain, or even a bunch. After a CT and bone scan they discovered bone mets in thorax and pelvis and also shadows in the peritoneal area. And in the skin around where The R breast was. I was told that I could no longer have a reconstruction using my own tissue but they could put in an implant. I asked what would happen to the left breast since it had numerous tumours and the surgeon said that further surgery was futile since I had spread.
i refused an implant asked him to remove the expander and said that I wanted a bilateral Mx. He disagreed. The Onc put me on LETROZOLE and after 3 months there had been a huge drop in my tumour markers. every time I was seen I reiterated that I wanted bilateral Mx. And eventually and because of the huge drop in the markers the BCN and the Onc and the surgeon held a meeting which I attended with my husband. The Onc was supportive although he said that he could see what the surgeon meant.......the surgeon still tried to persuade me to have sn implant. But in the end they agreed to surgery and I had a bilateral in May......6 months after spread was diagnosed and 7 months after initial diagnosis.
since then my tumour markers have reduced again. After another scan about six weeks ago it shows improvement in my bones, no further spread anywhere and the peritoneal area is "almost completely resolved" Still taking LETROZOLE, I feel that the aches and pains are worth it........I am much happier without implant and have no desire to have recon.
the surgery makes me believe. Rightly or wrongly - that I have got rid of as much of the cancers as is possible by surgery and I am much happier.

[doodlecat]

I had a phone call today sking me if I still wanted a second opinion. I asked for it four weeks ago and was told it had been requested and to whom I had been referred. Now it would appear that the onc I was referred to no longer works where I was referred to. I wondered if any of you in Scotland could PM me with someone they recommend. I live in the north of Scotland and I am being treated in Raigmore. I was being referred to the Beatson but I do not mind where I go.

I am wanting to discuss the fact that my treatment has been less than agressive amongst a few other things. I have Invasive Lobular BC but I suppose I would be clutching at straws in asking if any of you who have that type of cancer, were diagnosed with secondaries at the outset and who then went on to have surgery?

Thanks
June x

[belinda]

Hi Zara, hope someone lives nearby...I visited Hastings for a weekend a few years ago. Lovely place but the seagulls took a particular liking to my linen shirt. 3 times in one afternoon! How are getting on with your treatment? x

[zara68]

hello i live in Hastings. Anyone local? Bone mets diagnosied April 2012. x

[Jo_BCC]

Hi Tylerrose, (and any others who may be interested)

You might find it helpful to join in our Secondary Live Chat service which runs each Tuesday evening between 8.30 and 9.30 p.m. where you can chat in real time to others who have a secondary diagnosis. The session is hosted by a nurse and a facilitator. I've put the link to the service below if you would like to have a look.

http://www.breastcancercare.org.uk/breast-cancer-services/someone-talk/live-chat

Take care,

Jo, Moderator

[belinda]

Hi and I'm so sorry you have to join us Tylerrose but this is a very supportive place. I had my bc and bone mets together diagnosis ten years ago, in 2003. Good Luck with your treatment and anyway we can help please ask, shout out.
Hi myfanwy! Not seen you here for a while. I have the CA15-3 and CEA markers taken every 4 weeks. I too have spread to the ovaries which has been kept in check for 4 or 5 years now. Any scan I've had since they first popped up now shows them 'of normal appearance.' I don't have lobular bc though just a similar pattern of spread. A CT scan should be able to tell you if you have bone mets healing due to bisphosphonate treatments.
I still have my primary and it's much, much smaller so I've never wanted to upset the apple cart.
The fabric sounds lovely Katie. Hope the stag and the owls are the best of friends. My daughter loves owly prints, we also found some lovely russian dolls fabric recently.
Hi Geordiex, I've had bone scans a few times but I usually have CT scans. Have only ever had one MRI scan.
Take Care Everyone.. 🙂 ...x

[doodlecat]

Claire, a few weeks ago when I had all the growth he said we would probably look at mx now. At that time I was arguing over the failure of the Letrozole and didn't ask too much about mx. I have spoken to my GP about longer survival rates when primary removed (only because she was asking if I still wanted second opinion) and she had not heard this before. I am seeing the BS in three weeks. My onc is now off work on long term sick leave so my main point of contact (along with random locum oncs) is the BS so I will also ask him more questions.

I think you are completely correct in choppings bits out we don't need. Can't see the point in keeping them myself. Apart from the ovaries and womb which I no longer have any use for my right breast is now just a funny looking mis-shappen big hard horrible lump. My husband must think I am such a catch!

I will look at Susan Sallis. Still not ordered any new books. I think I am onto my last book that I haven't previously read and I always like to have a few in reserve.

Take care. June x

[myfanwy18]

June, looking at your post again, I really do wonder if you had surgery to remove the breast lump perhaps mastectomy, hysterectomy, rads and chemo you might feel all is being done that could be done. As we both know there are many ladies on this site that live for years with bone mets. Just a thought. Claire x

[myfanwy18]

June,
We do sound similar in many ways. I don't know how proactive your doctors would be to your insistence on surgery. For me if it is possible to have it removed I push for it, although sometimes the doctors are so busy in being "considerate" to me and how well I feel they fail to recognise the, "bloody take the thing out won't you" attitude I calming try and express. Like with this new breast lump thing. Becasue I said to the Onc I felt well the nurse said, well he wouldn't like to do much, whats that all about? Better surgery when you're well, sort of, than when your completely knacked from treatment. I'm for chopping it out unless you can't live without it. Yes, spoke to the nurse, sometimes I think we could advise them better than they advise us! Good you're feeling well, go by that and always insist on surgery if you feel it is right for you.
Somewhere June I recently saw on this thread a thing about books being discussed, I'm going to put my bit in by saying I loved reading Susan Sallis when I was going through chemo, found it very comforting.
Let me know your thoughts about what I've mentioned.
Love Claire x

[doodlecat]

Claire, I was diagnosed with the primary on Sep 28 last year and mx planned. By the time CT scan, MRI and pre op done it was discovered I was so anaemic they don't know how my heart had kept going. I had an internal ultrasound just prior to results from the other scans and they them discovered tumour on right ovary and spread to womb. Mx was cancellef as not well enough and as it was no longer 'curative'. I had had heavy bleeding for a while but thought I was menopausal.

Started on Letrozole, Zolodex implant, Zoleda infusion and Adcal tablets. Because the lump in my breast does not show up well tumour markers have been heavily realied on. Recent CT scan showed lump as 26mm and it it actually sbout six centimetres in a big solid round lump. Tumour markers also went from 70 to 280. After having to fight for it I have now stopped the Letrozole and started Capecitibine.

I actually found this thread because I googled Breast Cancer with spread to ovary and a post of yours came up. It would appear that we have very similar spread and both have Invasive Lobular. I also had inderminate liver mets reported on one scan but never showed again so they think that is not affected. Spread to bones in spine, pelvis, collar bones and ribs. I used to be surprised that your treatment was so different to mine but recent experience has me thinking my hospital just haven't given me the best care. I have now asked for a second opinion as I want to discuss this.

I think when I was first diagnosed the Breast Surgeon did really not expect me to respond so eell to treatment. I am very well other than tired at times. I think because I am so well I have tolerated the first round of Cap chemo really well.

I hope you are feeling a bit better now you have spoken to a nurse. So typical that the one you trust is not available when you need her.

June

[geordiex]

thanks well know my liver mets responding well but all bloods are fine and apart from the usual aches and pains of life don't have any symptoms they aren't concerned will ask more when I see them in a couple of weeks x

[myfanwy18]

Geordiex, I had a bone scan first which showed up mets in lower back, PETCT scan did the same and CT but since then Onc has relied on CT scans only. My first bone scan was inconclusive though but the PETCT confirmed it. I've learnt on this journey that there is only so much they can tell from scans and they probably always err on the bleak side. Now whenever I asked about my bone mets they seem a bit vague, I usually get "there is no way of telling if chemo etc has killed them off or not". Half way through my chemo for an ovary met the ONC said there was a large area in my liver showing in the CT scan - I thought it was all doom and gloom until the next scan when he said there was nothing there and it was probably a cyst, I just had a cystic liver apprently. Again, I had an MRI before seeing the gynocologist before the hysterectomy for the ovary met and my god, what a miserable so and so he was, if I'd listened to him I wouldn't have bother with the op and just spent all my savings. As it turned out after the op and chemo all is clear down there. My next hurdle is the recurrance on my mastectomy scar, which as you can see above is tough but just a bump or rather lump on the road. All I am trying to say I suppose is go by how you feel and that the doctors aren't always right.
Claire

[geordiex]

I only ask because i had a bone scan which was clear then a ct to check liver secondaries after chemo and ct showed marks ,onc said they had obviously responded to chemo but hadnt showed up on bone scan or previous ct 3 months earlier x

[Tylerrose]

Thanks Val for your support and its great you are still around to tell the tail,gives all us ladies such an uplift hearing from such a Trojan as your self, I do believe in positive thinking best wishes and thank you xx