Suspected breast to bone Mets

hi

sorry to hear about your sister and sorry to hear about the mixed experiences in the hospitals 

I had breast cancer in 2015 and insisted on further scans but usually they are not offered. 

In my humble opinion I'd prefer someone digging a little deeper on my behalf. 

I had had a breast scan in 2012 which was just reported as 'clear' but when we looked at it again in 2015 it wasn't and that could have had devastating consequences. Luckily for me the subsequent scans have been clear but in the back of my mind there is always some doubt. 

I also had an MRI scan reported twice and one team failed to spot a highly suspicious lesion. 

Because it didn't appear on the report the surgeon then failed to act on my pointing it out to him, in the meantime it had actually popped up as a clearly visible lump. 

So having been on the receiving end I can say that yes, unfortunately it does happen. 

Being told you have breast cancer is shocking and it doesn't seem to matter what age or stage you're at, it is only after a few weeks that you can take stock and gauge how serious it is for you.

I had zero symptoms in 2012 that would have made anyone suspect I had breast cancer, although the scan op pursed her lips at my crepey skin. I'd had all sorts of symptoms that vaguely seemed like they might be linked to the menopause and that's what the GP was happy to send me away believing. 

The oncologist told me that ALL secondaries have symptoms and that I'd know if I'd suffered a recurrence or spread.

I think that's a load of old cobblers. There are literally hundreds of people on here with all sorts of cancers who had no classic symptoms. 

Even if your sister does have bone mets it does sound like they may have found them promptly and that is bound to help. 

This is turning into a long reply, sorry, but we are always told that it's better to catch things early.

I'm not an expert but I have met people who are living with bone mets with barely any signs, symptoms or side effects. 

As I understand it pain is the biggest issue and obviously your sister isn't experiencing any pain at the moment. I have a feeling most bone mets are discovered once people start complaining of pain. I think this is a failing of our current approaches. We should have a more vigilant approach to cancer aftercare. IT could be down to money, staff shortages and the cost of long term medication of advanced cancer patients. That is a major political issue. 

You will have to stick with it for a while but once you get a definitive answer you may want to approach PALS to review your case. 

From what you've said there is no question she was going to require chemo, help her finish that course.

big hugs

Carolyn

xxxx

Hi Oli,

I agree with Carolyn that there are plenty of people with bone mets who are not necessarily showing the signs that might be expected. I have bone mets and apart from a mildly painful hip ( which I put down to aging for a good while)  I had no othe signs, and in fact it was tiredness which sent me to the doc which turned out to be liver mets.  It was once they scanned chest to abdomen that the bone mets were highlighted. I have them in several places  including the hip, but so far no pain other than the odd twinge.

I have been in treatment for 2 years, and things are stable so hopefully your sister will find treatment works for her too.

Like Carolyn, I think that aftercare following initial diagnosis and treatment is an issue. I was on tamoxifen for 10 years after chemo, and radiotherapy treatment for my primary cancer diagnosis in 2004   and thought that my tiredness was down to coming off it at last. In fact it was recurrence, but at no time during those ten years was I offered blood tests or scans which may have picked up potential spread. I believe as carolyn suggests, that there is a political issue at the heart of lack of aftercare - money,  and staffing being crucial. An underfunded and undervalued NHS is a threat to us all. Hope your sister does well on treatment, and that she copes well with the chemo.

Thanks so much for ur reply..  i was trying to ne hopeful that the doctor could be wrong nd the lesions could be something else but i do think hes suspicious for a reason.  I suppose the main thing is that she is being scanned and they will get to the bottom of it.. i have heard so many people lead normal lives with bone mets... thanks so much for replying to me

Thanks so much for ur reply.  Hopefully as u say even if it is bone mets that pls God its early and she will ne well looked affer and hopefully research will keep coming and they will find a cure yet x 

Hi there! I am belatedly joining the discussion! I too have bone mets which were discovered by accident really. In a nutshell diagnosed 18m ago after routine mammogram. All very positive initially but after lumpectomy was told that actually the tumour was much bigger than any of the scans etc had shown. That came as a shock I can tell you. So now needed a mastectomy and full node clearance : not to consent straight away but come back in 2 weeks time after I had considered it properly. Meanwhile.....because I kept asking might it have spread...they agreed to a bone scan and ct scan.

went back ready to consent....to be told that although the bone scan was clear,the ct scan showed it in my bones. My world fell apart.worst bit was that because I now couldn't be cured they would not do any further surgery ( it would be a waste of resources) but I would be treated "holistically " with the drugs and lots of good luck. I asked for RT as I was told it was in my nodes but no that would not be appropriate either.

i am sorry to say I felt very let down by the wonderful NHS at this point and turned to the private sector. I've since had full mastectomy and node clearance and RT . I am on Letrazole and am being closely monitored. I feel fine despite the fatigue and all the awful side effects of the drug but am so glad to still be here.

it isn't right and I feel upset that the system I trusted isn't being given enough funding to do right by everyone. 

But the real point of this post is to give the message that living with bone mets is positive and I hear stories from my medics of women living 10 years or more. I pray that I can be one of them.

i send big hugs and lots of love.keep positive 

Boogirl

Hi

I also have mets in by bones and have been informed I will only receive oral chemo tablets together with Leterzole and monthly 'bone juice'.  I have posed the questions as to why they won't give me Mastectomy, or RT.  Was told because it hadI metastases to bones it is not an option.

I was thinking of getting a private opinion but have been informed if you go down the private route, then the NHS will not fund any tablets or support me further.  I am not sure if I can afford continual private treatment but was wondering if getting a second opinion would also mean that I am  'struck off' the NHS treatment. Then there is the dilemma of what to do if private sector give a different treatment opinion.

Don't get me wrong I am very grateful for the NHS but I do wonder if they really are doing the best for me.

I am currently waiting my 2nd round of scan results, (had scan 3 weeks ago). Will now have to wait until 20th Nov for results

Incidentally noswad1 started a thread 'positive stories only' it is worth checking this out.  would post the link but I really am technoshite but would encourage anyone to have a read.

I have bone mets on my spine diagnosed with my primary at the end of August.  The diagnosis etc was done privately as I had private health cover and it all started via a bad back.

Since then I have had x2 spine ops - one of which was done on the NHS and a mastectomy done privately. I have zolodex and letrozole which are via the NHS as insurers don’t cover it .  I am starting spine radio today and will have some one the chest soon.  This is on the NHS at consultant’s suggestion.

I am waiting for vit d levels to come up for the bone juice abs that will be private for 6 months then NHS.  Consultants has said any further drugs will be a mix of NHS/ private as needed.

From my experience they can mix and match NHS and private stuff.   It is the same people I see though - just the setting changes.  

Hi chum

as another post points out , getting a second opinion is your prerogative irrespective of where it comes from. I have found that I am still on the annual mammogram check by NHS and I can refer back to them at any point. The staff were keen to know how I was doing and the NHS surgeon keen to know what his private colleague had done.

as u say it's a tricky decision as u may find that treatment plan may be different ( eg Palbociclib is the primary attack drug with the NHS and u can't have it at a later time if u don't want it when they offer it. My private oncologist says my particular cancer doesn't need it yet and he is happy to save it for when it is needed . As he puts it you don't fire all your weapons at once!)

personally I would want to ask a hundred questions and having an unhurried chance to talk to a private consultant is priceless if only to put your mind at rest.

i found the NHS admin faultless in their willingness to cooperate and share my test results etc with the private sector in timely fashion( after my giving consent of course)

i don't believe you need worry about being "struck off" the NHS uses many private facilities regularly and many NHS patients benefit from that.

please let me know what you do. If u need any further info please message me. Happy to help happy to just be a sounding board for you.

hope those pesky results come thru soon. Hope you're packing for that trip!!

big hugs boogirl x

Hi Boo

How flipping annoying just wrote a response and site froze arghhhh

So round two:

Sorry for late response I have just returned from 4 days in Wiltshire from a girlie break whilst my partner, two of his brothers an10 others have been on a stag weekend in Amsterdam ( I know where I would rather have been and its not Amsterdam).

Thank you for your response it is very helpful.  My results as of when I posted last were not ready. I have hospital next Wednesday so have decided to wait until then. I will pick up my next lot of tablets then and have bone juice - I go to Mexico the Monday after hospital so two week today and I will be on my way.  Flight lands 8pm UK time. Soo looking forward to it.

I don't get see my Onc until 17th December, a mixture of my holiday and hers - still I think waiting almost 8 weeks to see my Oncologist following scan is pretty poor. I will almost be ready for next scan by the time I see her.

You have given some really good honest advise and I will most definitely message you privately once I have spoken with hospital next week.

Thank you so much once again

Hugs from a fellow traveller

Lyn x

https://community.macmillan.org.uk/cancer_types/breast-secondary-cancer/f/breast-secondary-cancer-forum/186433/positive-secondary-breast-cancer-stories

Hi , the positive secondary BC stories that IamLyn mentioned can be found if you follow the link above.

Best wishes