68.4K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

HOW DO WE KNOW IF IT HAS RETURNED?

50 REPLIES 50
Pleasant1
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Hi Bondgirl

 

I don't want to panic you but I'd see your oncologist as soon as you can and get an X-ray. I ignored my rib pains for far too long. I was in total denial and pretended it was to do with everything else, including stripping wallpaper and painting ceilings etc. They X-rayed me in early December but saw nothing. I should have insisted on more X-rays each time it acted up but I didn't. I finally took my head out of the sand in June and saw my oncologist. They discovered a tumour on the X-ray. I also had other tumours and bone mets by that stage. Just get it checked out and keep going back if symptoms persist is my advice.

 

I hope your symptoms are a false alarm but due to my hindsight I'd advise being vigilant at all times. Only you know your body and what feels normal and what doesn't.

 

x

Bondgirl
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Hi everyone, I am 1 year post chemo for grade 2 invasive lobular and ductal, had second surgery for clear margins and full mode clearance as it wasn't in my first node. Then Inhad 15 rads and 5 boosters. Had ananstrozole for 15 days but didn't agree so decided against all hormone therapy (eeeek brave or stupid not sure which) but I wanted quality of life.

 

now I have had a cough for 5 weeks and a bit of pain when I breath in at rib cage.

 

worried could it be secondary in lungs - anyone help me understand if it could have returned or what symptoms are for secondaries xx

Guest user
Not applicable

Re: HOW DO WE KNOW IF IT HAS RETURNED?

I have been following this thread and saw Ann's link to the counselling site. There is so much amazing stuff in there, I have been reading and re-reading it. Anyway, I have 'cut and pasted' some of the pages so as I can follow up later on, in case they close it down altogether.

I was invasive lobular, with 13 out of 21 positive nodes. At first I had the head-in-the-sand approach, I didn't really want to know too much, but now I have come full circle and want more details... well, I should say, part of me does, part of me doesn't!

I too, thought I was 'cured' after surgery / radiation / chemo /Arimidex therapy, but it has now dawned on me that there is a real risk of metastasis at some point in the future. What a spectre! One of the phrases I read in the Cancer Counselling Trust link is "...we have seen the bus [the one we might get run over by one day] coming, but we don't know whether it will stop in time....." . You know, I think we even know the number on that bus!

But I do agree that having cancer gives you a licence for hypochondria!

I had a TRAM flap reconstruction done just over 12 months ago, and I'm really happy with the result. I'm an Aussie, in Australia, but we're all the same, really.

Take care, everyone, and thanks for sharing
Gerrie

jacqui37
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Hi ladies,

I have just discovered this thread and wanted to comment on something that schmooley said earlier about reading your notes. I did the same thing when hand carrying my notes between onc and PS. And then wished I hadn't. My prognosis is actually pretty good, close to 80% for 10 years, but even so seeing it all in writing and noting how little % difference my treatments were likely to make really upset me for a little while. I really feel for you schmooley reading your prognosis comment as you did.

I had immediate DIEP recon in July. I agree that it was great to be offered this and the initial results were fantastic, but my beautiful new breast is hardening and changing shape daily since I started radiotherapy. So there are pros and cons for both immediate and delayed procedures.

I only had the standard pre-op ECG and blood tests before my op.

Jacqui

Guest user
Not applicable

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Well I saw my surgeon today. She is quite pleased with my progress and said all was fine.

She is going to organise a bone density scan at Oldham Royal for me to see how my bones are fairing on Exemastane. She told me not to take any bone supplements until she writes to me with my bone scan results.

Anyway, all the questions that I was going to ask went completely out of my head when she asked me if I would mind having my photograph taken.

She said that when patients, especially young ones are told they have BC they are quite understandibly upset as all they see and hear in the media are horrible scars left after mastectomies.

She said she wanted photos of breast conservary surgery (I think that's what she called it any way!)to show women that there is another side to surgery. So I have an appointment in September - to see a female photographer - at the hospitals Clinical Photography and Illustration Department. The photographs will be anonymous so only my breasts will be photographed.

I will let you know how I get on.

Take care and sending you all love and good health.

XXXXXXXXXXXXXXXXX

Guest user
Not applicable

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Hi Schmooley,

Yes, Its the diep that I am hoping to have. The hospital that did my mx did not have a plastic surgeon and I would have had to wait another 3/4 weeks to have recon as well. They didnt think at the time there were any nodes involved. (how wrong they were...19/23)
The doctor did say it was probably a good thing as rads could have damaged the recon. Actually the skin there has held up well and appears to be normal now.

I like to think that with hormone treatment, it will be held at bay for the forseeable future and beyond. I think they think that way too. I know that statistically my chances are not as good as someone with little or no node involvement but just cling to the hope (like you do) I will be one of the lucky ones.

All the best
Linda

schmooley
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Thanks girls, the surgeon definitely said it was to make sure that everything was ok before surgery. She said that if they found somehing they would want to start treatment straight away and not want you to be weakened by the surgery. (If that sort of makes sense?)

Elljaydee, Interesting what you say about the blood vessels though. I am thinking of having the tummy one (DIEP I think) and she never mentioned that aspect of it. I also have node involvement and poor margins but like you say they don't seem worried about it. I have heard that some surgeons offer you immediate reconstruction regardless of treatment plan or prognosis. I only feel slightly regretful now that this was not offered to me as an option because I think the reconstructions look slightly better if done immediately rather than delayed. (Personal opinion, not meaning to offend anybody)

Ruby1
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Hi Schmooley

i had scans before my reconstruction earlier this year. This was to make sure all was ok inside me. I pressed my plastic surgeon as to why I had to have this as it made me very anxious and he told me that in a very few cases, people had gone on to have recurrences after and he (they) didn't know if it was always going to happen or whether it was the surgery which triggered it - well I was terrified but went through with it and all thankfully was ok.

It is a relief though to know all is ok
xx

Guest user
Not applicable

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Hi Schmooley,

Dont know if its the same but I have told I will need scans before proceeding with recon. However, reason I have been given is to check the blood vessels etc.. havent been damaged by radiotherapy. At moment, they are talking about removing lump from tummy and replacing there and you need a good blood supply.(name escapes me at moment of the type of recon)

When meeting plastic surgeon, I thought they might be iffy as I had extensive node involvement and low margins. They didnt even mention it. I had a bone scan recently because I was getting pains in my legs, came back negative.

I have an appointment in a few weeks but still no date for the scans so I think I am looking at next year for recon. Had my mx in Jan 09 and finished chemo/rads in Sept 09.

All the best
Linda

schmooley
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

ps. it's me again! on the subject of scans etc. I have just had a meeting with the plastic surgeon with regards to reconstruction and she has told me that before the surgery I will have scans of liver/lung/bones and I think that there was something else, to make sure that all is ok before surgery. Although a clean bill of health would be brilliant, I think it will be an extremely anxious time once again and I feel slightly apprehensive thinking about it even now. (surgery probably won't be for another year anyway)

Has anyone else had this before reconstruction?

schmooley
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

I have been reading this thread with interest and feel that I need to add a point about reading your pathology report.

When I first met my oncologist she went through the pathology with me, told me about size grading etc and then went through the treatment plan. After a while I read up a bit more and asked her in percentage terms what my chances were as I thought, from what I had read, about 50/50 and she agreed that this was not far off but perhaps slightly better. This was fine, I had got my head around this and just hoped to be one of the lucky ones.

On my penultimate chemo, I was asked to carry my notes from the consultants to the chemo unit which was usual practice and I got nosy and read my actual report. Most of it confirmed what I had been told but unfortunately it also said at the very end 'Poor Prognosis' and to be honest I was devastated. Perhaps a 50/50 diagnosis is a poor prognosis but to actually read those words about yourself was awful and took me a long time to get over. Although i'm not sure I ever really have or will.

I'm not sure if this is something on everyones report, so just be aware that you really might read something that you wish you hadn't.

All the best ladies xxx

elinda45
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

I haven't been on the site for a couple of months but was so glad to see this posting when I looked at it again.
The problem with scans etc is that they often pick things up which may not be cancerous and then you're left with a degree of uncertainty again.

I had a scan prior to treatment and there was a spot on my liver but they couldn't tell what it was. I had chemo first to see if it reacted or if it grew - fortunately it did neither which means it's almost certainly a benign haemingioma.
My bone scan was clear but an MRI show a couple of spots. These were looked at in a multidisciplinary team meeting and decided that they were almost certainly benign haemingiomas again.

Recently I've been having terrible acid reflux. So to be sure I had an endoscopy which was clear but there was so much anxiety with it all.

Throughout chemo my Onc did cancer marker blood tests which was helpful to see that the chemo was working. However 7 months after finishing treatment to alleviate my worries about all this he has suggested doing the markers again.
This is a real dilemma. They are notoriously unreliable which is why they aren't broadly used and if they're raised you don't know if it's actually cancer or not or where it might be.

At the moment I'm holding on to the blood form undecided. I've no new symptoms that would indicate a problem and I don't know if I can face the anxiety of a 2 week wait for results.

Elinda x

Guest user
Not applicable

Re: HOW DO WE KNOW IF IT HAS RETURNED?

hello mexico - I was diagnosed with Grade 2, invasive lobular bc, last August. Like you, I had a WLE/SNB (Sept) and 19 rads, 15 plus 4 boosters (Dec/Jan). I had a check with the oncologist, post-rads in Feb and another is due in October. I had a check with one of the surgical team in June and my next mammogram is in August. I am taking Letrozole. So, I am very similar to you. I have not been given any tests, not even my blood, since surgery. There was no evidence of spread to my sentinel node and so I suppose they feel there is no need for further tests, unless I have symptoms. Like you, I find it all very scary - we all do. Every ache and pain becomes linked in our minds with bc and makes us paranoid. It is only natural. I was sent a letter from the BCN inviting me to go in for a chat, which I did. Maybe you could give yours a ring, or this helpline, if you feel you need to talk over your fears.

Have you read this article? I keep posting it on various threads but it does sum up how many of us feel.

http://www.cancercounselling.org.uk/northsouth/extra4.nsf/WebResHarvey?OpenView&ExpandAll&Count=500

To ensure you can find posts you are interested in, click on 'Save discussion to profile' at the top.

Take care.

Ann xxx

Guest user
Not applicable

Re: HOW DO WE KNOW IF IT HAS RETURNED?

hi everyone/anyone..!!
I have sooooo many questions and worries in my head but i feel ive pushed it all to the back of my mind because i'm so frightened to know i suppose.....
anyhow, i have spent many hours reading through various topics and posts on here and am still confused, perhaps because i dont really understand as there are so many different elements to breast cancer eh? I was dx in Jan this year, grade 2 invasive lobular, told caught early, had wlc and slnb; then 15 rad sessions. Have had one check up with Oncologist and bloods tested. Havent had bone scan or any other tests so how will i know if anything sinister is going on in my body....i'm still so frightened.....i feel as though i'm just another statistic. Can anyone help please/advice??? I'm not too good on the computer so i hope i can find any replies to this post again !!
thank you in advance...
keep well..
mexico xx

Guest user
Not applicable

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Thank everyone or your comments. I think I will ask some questions when I see my surgeon and BCN in August. I will have to make a list. Yet another side effect of the treatment, I have become quite forgetful!

Belinda, I agree with Debonair. Don't stop postng. I value your imput.

I will let you know how I get on at the hospital.

Love and good health to you all.

XXXXXXXXXXXXXXXXX

Guest user
Not applicable

Re: HOW DO WE KNOW IF IT HAS RETURNED?

MostonMauler - You could ring your Breast Care Nurse. She should be able to answer your questions on grade, etc.

Ann x

Guest user
Not applicable

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Hi everyone

Reading through the thread, I thought this booklet might be useful. http://www.breastcancercare.org.uk/upload/pdf/bcc_followup_final4.pdf

It's called "Your follow-up after breast cancer: what's next?" and takes you through your follow-up appointments and screening, and talks about recurrence and signs and symptoms of secondary breast cancer.

For information about secondary cancer in the bones, have a look at this booklet http://www.breastcancercare.org.uk/upload/pdf/SBC_BONE_2010_FINAL_for_web.pdf

I hope this information answers some of the questions on this thread.

Don't forget you can also call the helpline (0808 800 6000) to talk through any questions or concerns you have.

with best wishes
Leah (BCC)

belinda
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Hi Debs!..oh that's a great scan result. 🙂 do private message me anytime..I'm always planning little forum breaks but still dip in here daily..just looking for a little 'normal' so hopefully posting less soon..but still here..now for some ironing..linen trousers and tops..great! 😕 x

Guest user
Not applicable

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Dont you DARE stop posting Belinda - you have helped me sooooo much ! Hope all goes well at your next appt - my last ct scan showed a little bit of healing to some hot spots - I was amazed but happy xx

finty
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Hi MM

Don't feel embarrassed at all - I think many of us take quite a while to find out all we want to know about our cancer - I know I did. As far as staging is concerned, you can probably work it out yourself from the information you have - although there are sub categories within each stage that might require more input from your onc. There is a section on this website that explains it all.

finty xx

belinda
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Hi MM..I've only ever asked for what I felt I needed to know at the time..it's all been bite sized stuff and there's stuff I still haven't asked seven years later. Some want to know everything about their individual diagnosis but I've found it easier to deal with things on a need to know basis..things further ahead can stay on the back burner.
So sorry I feel I have monopolised your thread..I'm desperately trying not to spend so much time here but look in to see how others are and end up posting..yet again. I must really try harder.
Good Luck with your appointment next month, I hope it goes well.
Take Care..x

Midge
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Hi

At my hosp you can ask for a copy of your pathology report which should contain all of that information. You can telephone your surgeon or consultants secretary and ask for a copy. Sometimes you need to fill out a form, but my consultants secretary said she could send me it any time. I have admit I know most of what is in it but have never been brave enough to ask for. Sometimes you can only handle so much information.
If you get the report and there are things you don't understand you can then go through them with the docs or the helpline is very useful for explaining things. Dx

looking_lovely
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Dear MostonMauler,
I don't think you need to feel embarrassed to ask questions,I understand what you say about shutting info out or not taking things in.It is so traumatic to have this diagnosis,I was mainly focussed on what was to happen,not so much on grade/type etc.It could be useful for you to have the info now as you may be treated by doctors unfamiliar with your case.so I'd say go ahead and ask.

Guest user
Not applicable

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Hi Belinda

You seem to be quite knowledgeable and I think I can speak for others here that we grately value you input.

Just one thing I would like to ask everybodies opinion on.

When I was diagnosed I kind of shut all the information out on what I was being told, and when reading other peoples post a lot if not the majority of people are very up on their own dx, like the type/grade etc.

I know what type of bc I had as it was written in a special binder I received from my hospital, but I don't know what grade it was.

After nearly 3 years from diagnosis I feel now that I need to know these things. I have my appointment at NMGH on 23 August and I was thinking of asking my surgeon. What worries me is that they might think I am some simpleton for asking the questions now. But at the beginning everything was quite a blur to me.

What do you think. Please be honest and tell me if you think i should know all these things by now.

Love and Good Health

XXXXXXXXXXXXx

belinda
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

I'm, (surprise, surprise) at the hospital next week so I will ask lots of marrow v. no marrow involvement questions..if I'm not considered to be terminal at the moment I will be very happy, (make that ecstatic!)..and will post here. If not well I already seem to have written a novel on life with bone mets on this thread..apologies!
x

finty
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Thanks Belinda and Lulu that's very helpful. Belinda you are getting really fantastic care and I agree the monitoring every few weeks is very reassuring.

finty xx

Lulu34
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

if you have bone mets in the actual bone then as you say they can do some damage but not ultimately end your life, however if it is in the marrow this is where the red and white blood cells are produced and it can cause things like anaemia and neutropaenia which means you could get infections and become septic which could be life threatening so even if it doesnt spread to another organ it can still be fatal if its in the marrow.

belinda
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Hi Nicky and Finty..I'm no expert but I have picked up a little info along the way..mostly from others with mets. I've had friends who had serious problems which led ultimately to their deaths, bowel problems etc due to spinal cord compression and the hypercalcemia problem, kidney problems due to many treatments. Mobility problems leading onto further problems etc. My (very, very) limited understanding is when all treatments start to fail and the tumour load is great this leads to various imbalances and problems and at the end of the day we all need a strong, healthy skeleton.
I don't know why some Oncs are reluctant to use markers for mets patients. My Onc is highly regarded in Onc circles and I know most mets patients are not so regularly monitored..I'm an NHS patient btw. I know this amount of monitoring would not suit all mets patients but I feel very reassured and when a treatment is giving good results it does give me a peace of mind. I don't feel I'm in limbo waiting for the next scan. I'm at the hospital every 2 and a half weeks giving blood for markers and all the other readings. I have a phone call from my chemo unit 2 days later letting me know if my bloods are all ok for chemo. I see my Onc doctor for a consultation every 3 weeks..there are 2 Onc doctors working for my Oncologist so I see one or the other, which helps as I've always had a consistency of treatment and they know me well..after all this time. At my consultation I get my marker results, bilirubin, potassium level results plus others (sad to say they are recorded in my diary!) and I'm asked how I'm feeling (every few appointments my abdomen is examined for any liver swellings etc..lungs are listened to, breasts, no mast as was diagnosed stage 4 from beginning and armpits examined along with neck for any lumps or bumps.) After seeing my Onc doctor I go to the chemo unit to pick up my Capecitabine. So I do see an awful lot of my hospital but this suits me. Finty in my own case because I have had (so far) good, long lasting responses to treatments it's thought my cancer is slow growing and very responsive to treatments still. I'm er+ and her2-. I have never asked the how long do you think? question and over time I've aimed for remission, no active cancer rather than cure.
I've also had fantastic care from the orthopaedic dept re my hip replacement and have appointments with them alongside x-rays taken once a year to check all is well and I don't have a screw loose 😉 and the replacement is wearing well and stable. I was also told I could have a replacement replacement when this one wears out..who knows if I will still be around but it was nice to know.
Sorry such a long post!
PS..I have lytic bone mets..I understand these are more common than blastic mets.
PPS..it may be hard to believe after my posting but I have hope, lots of HOPE and there have been treatments introduced since my diagnosis..so a realistic but also a glass half full gal.

finty
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Hi Nicky - my understanding is that bone mets don't kill you - like you say it is the spread to organs. Unless I suppose there could be a situation where the bone mets spread is so extensive that it causes a system inbalance that leads to organ failure - I've no idea if that is possible.

Guest user
Not applicable

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Finty - what a good question, I was thinking the same.

I wish Belinda was my oncologist, she knows more about bone mets than my current ones appear to. Her oncologist does seem proactive, I always have to seem to chase things up! I was diagnosed at the end of April and told I'd be scanned again in 3 months, yet I haven't heard anything about future scans and my next appointment is not til 3rd Aug, so if they are arranged then it will be 4 months.
I asked about blood tests and was told that they were not relevant to me.

Belinda one question that I feel that I need to ask, it may seem like a strange or morbid question and others may not want to know the answer to it, but how do people actually ultimately die with bone secondaries. I always assumed that, at the end it ultimately was spread to organs that stopped functioning. I hope I haven't offended anybody by asking that, but reading your earlier post the thought came to me.

Take care all, and to those of you who don't have secondaries, let's hope that you never need to find out!

Nicola

finty
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Thanks Belinda - I had a feeling it was you - fount of all knowledge on bone mets! Did your onc say whether there are any pointers to help predict whether you are in that group or not - ie if no progression after x years things look good, or any characteristics of the cancer (hormone status etc) that can help in prediction? Thanks

belinda
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Hi again Finty, it may have been one of my posts which mentioned the ''14% of those bone mets...'' as this is the figure I was told by my Onc.
If anyone is overly concerned about the possibility of bone mets it makes sense, to me, to know sooner rather than later. If only to start bisphosphonates to help reduce the risk of spinal cord compression, fracture or hypercalcemia alongside other treatments that could help contain or slow the cancer from spreading elsewhere.
That said the only pains I ever experienced happened during the time I was on Arimidex and it was all due to the side effects from the tablets. Aromatase inhibitors can cause so many aches and pains.
x

finty
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Hi MM

When you get aches and pains from the se's it is very worrying and hard to separate out from non se's. Maybe it would help if you kept a record of when you get the symptoms to see if there is a pattern - it might put your mind at ease.

finty xxx

Guest user
Not applicable

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Thanks for all your comments.

Even before I was diagnosed I had the odd back ache and hip ache now anf again, but it wasn't/isn't constant.

The trouble is I am now on Aromasin (Exemestane) and one of the side effects is aching bones. But I suppose aching bones and painful bones are two different things.

I will try and be a bit more positive and grateful for small mercies, but sometimes it is so hard to be positive.

Love to you all and good health.

XXXXXXXXXXXXXXx

Guest user
Not applicable

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Thanks, Belinda. The website you posted was really useful.

AlexG

finty
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Hi Belinda - I'm learning a lot today! I had never heard any mention of whether the cancer is in the marrow before, and didn't realise it was significant - I will now investigate. My onc seems to be in the wait and see category, but I like the idea of monitoring markers and as I have bloods done every three weeks for my IV Avastin and Zometa, it wouldn't be any extra trouble to me - just expense obviously.

Regarding bone mets possibly not being terminal - I get mixed messages. I am fortunate (relatively!) to have only one smallish bone met. At dx my main onc was very reassuring, she didn't seem overly concerned about the bone met (at that point is was suspected, not confirmed) and told me that people can now live for many years with bone mets, and that I could well live to a good age and long enough to die of something else - I am 51 so I was reassured by that, having assumed the game was up. The onc I see for RT seems much more pessimistic and although she hasn't said anything specific, when I discuss treatment options with her (I was trying to persuade her it was worth giving the bone met enough rads to obliterate it, and I would then be NED with a long shot at a long remission or even cure) her attitude was that's not really what we do with bone mets, the implication being because it's pointless. In fact we went ahead anyway - so we shall see! She did say that some bc bone mets will always stay in the bones and not progress to the organs - but I was too afraid to ask for the stats at the time. Someone else on here said it was about 14% but I have no idea if that is correct - lower than I was hoping!

So I guess if we are in that lucky 14% and the bisphosphates and hormone therapies do their job - maybe we could outlive our cancer? Plus as everyone without cancer constantly tells us - they're coming up with new treatments all the time!

finty xx

belinda
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

These are the tests, markers I've had taken at first every 4 and now every 3 weeks.
http://www.labtestsonline.org.uk/understanding/analytes/ca15_3/glance.html
At the end of my 3 weekly chemo cycle.
Finty, I believe these markers have helped me stay so well. Have helped my mets stay within the bones. My markers are very reliable, although not everyone's are and I've been put onto another treatment when my current treatment has shown signs of failing..by a small number of consistent rising marker readings. Long before, I believe, I might have any symptoms.
I haven't raced through treatments because of this, most of my treatments have worked for years at a time, the exception being Exemestane.
I don't think it matters whether you have many or few mets as any activity will be picked up. And when there is no activity you have peace of mind..until the next time..I do get anxious each time and I've been having these readings since 2003! I would not want to stop having markers taken though, many Oncs have a wait and see if you have any further symptoms, pain approach once you are diagnosed with mets. I'm so grateful my team are so pro-active. As well as the markers I've always had electrolytes, bilirubin and other readings taken at the same time. I can't say I'm not well monitored although I know this approach would not suit all with mets.

Guest user
Not applicable

Re: HOW DO WE KNOW IF IT HAS RETURNED?

I had severe back pain which my oncologist suspected might be bone mets. He ordered blood tests and a bone scan. The bone scan came back showing 'hot-spots' but the blood tests didn't show 'cancer markers'. He then ordered x-rays and an MRI which showed spine damage but no evidence of mets. Throughout the tests the oncologist was positive and doubted it was mets because of the blood test results. I have no idea what blood tests can indicate but obviously alone they are not infallible because he ordered those further tests. If anyone knows about 'cancer markers' in the blood I would be interested to know.

AlexG

belinda
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Most others I know of with bone mets have a much more pro-active treatment than bisphosphonates (bone strengtheners) only..if only to help reduce the cancer spreading through activity to other organs.
I was diagnosed (I'm the person mentioned earlier in this thread with the spontaneous hip fracture) seven years ago and have never been told this is not a terminal condition. I was recently told it was thought I probably didn't, much to my surprise, have marrow involvement but this has changed nothing. Treatable yes, perhaps for a while but curable? No, although an elderly patient may die of something else or old age itself. Some lucky ones (I include myself) can live with bone mets for many years but I have lost many friends to bone mets. They had no other organ involvement. I like to keep a positive and upbeat outlook and I take, need no pain killers but I feel I have to point out bone mets are stage 4 cancer, not a stage 3 and a half. I had 5 years of hormonal treatment and I'm now on chemo, Xeloda (Capecitabine) which has been a very effective chemo and has kept me in remission for 2 years now. Hormonals also kept me in remission for most of the five years I was taking them. I would love not to have a terminal cancer but I have.

Lulu34
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

bone secondaries dont really get treated per se by chemo more likely with bone strengthening medication and pain killers so if its bone mets your worried about not knowing wouldnt decrease your life expectancy.

at a conference i was at recently they even went as far as saying that bone mets were not life threatening themselves and only became so if the cancer was actually in the bone marrow rather than the bone.

Lx

Guest user
Not applicable

Re: HOW DO WE KNOW IF IT HAS RETURNED?

That's interesting, Sarah. So, is it not the case, as it is with primaries, that the sooner secondaries are caught, the better?

I have pain in my shoulder, neck and one hip. I had it to some extent before dx and have assumed that it is an age thing, although it has got worse since, probably due to low oestrogen. I did have a scan on my shoulder before this bc thing reared its ugly head and was told it was just wear and tear. I also have a slight discomfort at the bottom of my ribs, around the liver.

I now have a problem with my big toenail, just one. I have a ridge across it and it feels as if the nail is being pulled off at the tip and is quite sore, although looks ok. I am not sure if I damaged it at some point and can't remember - very likely, as I can't remember much these days - or whether it is a symptom of something else. I can't find anything on the internet that matches.

MostonMauler - I started a similar thread a while ago, when I was wondering how we would know if symptoms were due to low oestrogen or not.

As Alan Bennett said, cancer is a licence for hypochondria:-)

Ann x

horace
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

You are absolutely right Sarah and that is why I [with tnbc]refuse all MRI or CT scans though I would have a bone scan if I had symptoms.

Guest user
Not applicable

Re: HOW DO WE KNOW IF IT HAS RETURNED?

I think the reality is that knowing earlier doesn't really help in the long run as there are limited numbers of possible treatments - eg I could find out tomorrow at a very early stage of secondaries, and then with treatment live say 10 years, or find out in 5 years at a later stage and live for a further 5 years - the total is the same. Personally I am not in a hurry to find out (a real head in the sand approach to life!) so will go with my doctors and not insist on scans unless worrying symptoms appear and persist over time.
best wished to all
Sarah

finty
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

I think there is a bit of a pattern to arthritic pain - after you've over done the exercise a bit, or been sitting too long - those sorts of things, that wouldn't apply to bone mets.

Steph10
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Maybe arthritic pain comes and goes, but the sinister kind is probably constant. It's something I'm going to have to read up on.

topsymo
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

I think this is a very relevant post- - I know it is something that has given me some pause for thought

I was picked up on a routine screening 2 years ago, when I was feeling as fit as a flea. I had no lump or other symptoms but was still found to be Stage 3 Grade 3.

After all the usual jolly treatment, I again feel really well again. I am not a particularly anxious type of person - I have had minimal contact with my BCN post surgery and I really resent having to contact to my GP to renew my prescription every month...... but I do have several arthritic joints and have wondered how one knows what is arthritic pain and what is something more sinister?

CassyR
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

Hi there everyone and I have just finished my chemo and two days into the Tamoxifen, and I know how you feel with the uncertainty. In fact I asked this question of the nursing team on this site and they confirmed there is no clear way of knowing - we just have to be vigilant.

I found it particularly difficult that lots of friends and family expected me to have tests which would give me "the all clear" and in fact there's no such thing. So the answer I got was "its ok not to have all the answers, there is no regular definitive test" so just stay vigilant and try to get the risk of recurrence in perspective and dont let it run your life.

love to everyone, stay vigilant, but positive and lets hope we all do ok with our progress.

much love Carol x

finty
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

I think the short answer is you can't know for sure until symptoms are quite advanced - even then sometimes there is no warning. I know one of the posters here had a spontaneous hip fracture from bone mets with no warning at all. Regular scans will pick up tumours but not micro-tumours, but will also pick up lots of false positives that will need further investigation, so further scans, and further undesirable radiation exposure. For most people I think the system works pretty well, as long as you are seen quickly when you do have a concern.

I know some of the secondary ladies here have their tumour markers taken regularly to assess cancer activity levels - I haven't been offered this, maybe it isn't appropriate for small bone mets - and I know some oncs don't seem to like using this tool.

I think the only thing you can do is know what symptoms to look out for and be vigilant - but try not to worry too much.

finty xx

Guest user
Not applicable

Re: HOW DO WE KNOW IF IT HAS RETURNED?

I think about this too sometimes,I suppose if we are feeling well we have to assume that all is well.I was told that if you have a worrying symptom for more than 2 weeks then should get it checked.Also that too many scans can be harmful( not sure if that's really down to cost though),and that it wouldn't make any difference to the treatment or outcome if secondary's were found when you had symptoms or through regular scans.

Best wishes Mel xx

horace
Member

Re: HOW DO WE KNOW IF IT HAS RETURNED?

I'm not the best person to answer this but I will try.If it returns as a recurrence in the breast or region then it will manifest as a lump which will either be detected in your regular mammogram or by you or a doc doing manual examination.You are having an annual check up but if you find a lump then go to your bcn or gp and get an appt at clinic.
If,however,it comes back as mets it is more complicated because scans wont detect very tiny mets.They are usually found when you have had symptoms for longer than about 3 weeks which dont get better with conventional treatments.These can be a cough,pain in liver region or in bones[usually spine,long bones,sternum]or headaches,dizziness,persistent nausea etc.All these things probably have benign causes but should be checked after 3 weeks if you are worried.
The short answer is,we dont know-we will find out soon enough.You have 2 years under your belt-Congratulations 🙂
Stay well,be vigilant,try not to worry.
Love
Valx