Treating asymptomatic mets

[Lulu34]

Thanks pam

Im at the same unit as val but differnt onc..... His view is im young and fit at the mo and maybe blasting it now may be better as putting off the aggresive treatment could mean im too poorly to have it later on but he did agree that there isnt a right or wrong.... And he thinks its likely to be TN again which has a poorer prognosis too.

There is a trial for TNBC for a drug called genetispib which is only for 12 weeks so i may go with that as it has mild SEs and if it doesnt work well no harm done and can have some thing stronger next time.

But thanks for your input too its really good to have other people views.

love Lulu x

[pam01]

Hi Lulu. Im herbgarden although the new forum sees me as pam01?!

I think intuittively we all feel that mets should all be treated as soon as possible to keep things under control.  studies indicating that outcomes are worse in this country than in other european countries and the states might indicatethat less aggessive/fewer choices for  treatment here might be at least one of the reasons for this again indicating that early treatment may be better.........but I think the jury is out!

My onc (an author on the paper discussing outcomes) sees himself as "evidenced based". He told me he had become more conservative after being involved in research for more agressive treatment (in terms of higher dose chemo) in primary breast cancer which led to no better outcomes and increased mortality from side effects of treatment.

I think timing of different treatments is an art as well as a science. ...To get maximum and longest possible benefit from the options which are available....and sometimes that may mean delaying more aggressive treatments until the right moment even if in virtually every other situation in medicine this would not be the appropriate thing to do and appears counterintuitive..........I think scottishlass /her onc seem experts at spining out treatments........managing to do the right amount of holding off treatemtn vs pauses for 14 years or so! (plus presumably a bit of luck). Im sorry not to directly answer your question but Im not sure the evidence for the correct answer is out there and you may have to depend on the experience of your onc plus your own views to make a decision! best wishes Pamx 

[Lulu34]

Thanks for your views and comments Angelfalls and Rattles.

Xxx

[Rattles]

Hello Lovely Lulu,

I have no special experience to draw upon and am only responding as I care about you and you have helped me and so many other women on the forums. I don't have mets. (as far as I know) and so its only possible for me to imagine the dilemmas and feelings you are facing.

I just wanted to share that like you and having had breast cancer twice, I think you start to understand the limitations of treatment. I knew when I had my second lot of chemo there was no guarantee that the treatment would help. On the other hand, I took that treatment as I needed to believe it would help and as Angelfalls says, I hoped it would give me more time.

I know you enough about the science to ask the right questions, but from an emotional point of view, I think it is also about risk/benefit - the risks of watching and waiting, the benefit of starting treatment soon and your overall quality of life.

I really wish I could offer some information and hopefully someone will post who does?

Take good care Lulu, Rattles xx

[Angelfalls]

Mmmm... The outcome isn't going to change; yes, sooner or later we're all going to die of our mets. But the time we get and our quality of life can be greatly improved by the treatments we do. If not, the NHS wouldn't be wasting their precious resources on funding any treatments for mets.

If you find a treatment that works well for you, you may remain asymptomatic for a long while and could even get to spend some time with NED. If you delay starting treatment, you give the little buggers chance to really take hold and spread even further, which makes it harder to get things back under control. Of course, there are no guarantees and we might never find a treatment which works for us, but if we don't even give it a go, we'll never know how well the treatments might have worked... That's my take on it! Hope it gives you some food for thought, Lulu...

[Lulu34]

Hi folks


My history....
Er+ grade 1, stage 1 BC in right in 2006 and had WLE & SNB 0/2, rads x 25 and tamoxifen. After finding a lump
TNBC grade 3, stage 1 in left in 2009 and had WLE & SNB 0/2, E-CMF chemo and rads x 25. On annual mammo
TNBC grade 3, stage 3 in left chest LNs in 2011. had WLE & ANC 2/7, CarboTax and rads x 20. On annual MRI

On annual MRI in 2013 2.3cm lung tumour and mediastinal LNs confirmed as cancer on CT. had bronchoscopy to confirm type and receptor status.... Currently awaiting results.

As this new lesions was picked up on routine mri i was not aware of any symptoms..... No pain, no cough, no shortness of breath.... So basically im fit and well.

All the evidence that currently exists on detecting mets early shows that it doesnt improve the outcome and that is why they do not screen women following primary BC and rely on people being diagnosed based on symptoms.

Now i am due to get results from my onc on fri and we are gonna decide on a treatment plan based on the type of BC it is. But iv been thinking over the last couple of weeks whether i should actually have treatment as im asymptomatic and if i hadnt had the stupid MRI (which was looking for primary BC due to being a BRCA2 carrier and having a high risk of a new primary) then i would actually be none the wiser and living my life in blissful ignorance.

So does anybody know of any new evidence which might support early treatment of mets? My BCN said she understands the dilemma and wouldnt know what to do in my situation. I will obviously discuss it with my onc on friday but any info would be gratefully recieved.

Cheers
lulu x