so angry about protocols for sec dx

I have a rare breast cancer in that I have no primary dx.When I was dx I had a huge lump under my arm which was found to be cancer and this had not shown on any mammogram or with ultrasound.The normal proceedure is to do a mri,but not in my case because it had spread to my lung and bones.Normally there is an option which treatment you have mx and axillary dissection or chemo and rads.Because I had secs the mx was never an option.Ok I may have chosen to go the chemo routebut the option to choose should be available.
Following 3 months ariadex(deemed a failure)3 lots of fec,6 tax and 35 rads the mass under my arm has shrunk from 10x8cms to 2x3cms but despite being on femera for 12 months there is no further shrinkage(in fact onc thinks there is a possibility of slight growth).
I have been told that as the lump is now more mobile surgery is possible.This however is possible and because of my sec dx not likely.
It is so unfair that a sec dx should exclude us from treatments.I am now fed up with this wait and see approach.I did wait and I can see no hope, so I am going to ask for a second opinion.Even getting a ct scan is not seemed as necessary, This I think is a cost thing not a medical one.I know my cancer is a rare one and can understand the difficulty oncs have with treatment, and following all the researvh I have done I accept the treatment I have had is what is recommended.
My gripe is why I should be treated any different from someone who presents with out any secs at dx.
Sorry rant over, I am just really upset that it is necessary to fight for treatment.I know I would have got the surgery I want at my previous hospital as my onc there had recommended it, but I moved and
am now under a different hospital.Another case of sec treatment not being standard around the country or is it just a case of different oncs doing things a differnt way. I don’t know but I still feel sec patients are not getting the treatment they deserve.


Hi Lucinda

It is so frustrating to feel we are being written off from procedures that could help us because we have secondaries - I’ve come up against the same attitude myself. So far, I’ve managed to convince my team to go ahead with what I’ve asked for - but I know that is likely to change in the near future.

I think there is some research that shows a benefit from surgery with secondaries - I think it was discussed on the bone mets thread a few weeks ago. It’s worth having a thorough search for some - Pubmed is a good place to start - and I’ll have a look too. I’ve found my oncs reluctant to turn me down if I wave the research in front of them – they have more or less said that I get treated a little differently because I always go in well prepared.

If Lemongrove is reading I think maybe she has some useful links on this subject.

finty x

Hi finty
thanks for that.When I go back for my next appointment I intend to be fully clued up.My onc will be a bit surprised, he is not a man of many words - hums and arrs a lot with a lot of shrugging.
I did find 2 case studies where surgery was the normal recommended treatment with sec patients. One in Greece and the other in China.
We seem to behind so many other countries.

I sometimes feel I am being punished for presenting with a sec dx.It is not my fault my cancer was not detected at an early stage when treatment and cure? were a possibility.
I just feel much of it is down to money.I realise that there is a limit to funding, and that they get “better value for money” by concensentrating on patients with an early or treatable dx.
My brother’s comment on the subject is that I worked all my life,paid my taxes and am ENTITLED to the best treatment available.
I am not sure that I look at it that way but I do object to being made to feel as if I am a drain on their precious resourses, and not worth the effort!

Off to do more research and thanks for your support.

Linda x

Keep pushing Lucy - and know that we are here to support you. If you look at the website for MD Anderson centre in Texas you will find lots of research to help back up your views and they have some of the best survival rates for secondary bc and tackle the primary site as well surgically.
Not easy keeping us the pressure when you are ill but hoping you get the sense of strength coming through to you. You are so right - we all deserve the best.

I am hoping to have mx end of oct. I have bone mets. Onc reckons it will give me a better quality of life. Bone mets seem ok at mo and fortunately no spread to soft tissue as yet. How are things now? You should be entitled to an op.
X sarah

Good luck with mx and i hope your onc is right.That is all we ask for,a better quality of life.
I have asked for a referral to the Royal Marsden and am waiting for
an appointment.Hopefully they will be in agreement with me for more aggresive treatment.I just want to give myself the best odds possible.I am fed up with people pointing out to me there is no cure.
I know that but surely they should also be aiming at a better quality of life and longer survival.

Linda xx

hi lucinda,
I thoought I’d let you know that I had a mastectomy last year, 3 and a half years after my diag of primary bcand secondaries in lungs, after me, surgeon and onc reviewed the evidence that is accumulating about the benefits in terms of survival for people with secondaries. So keep pushing and good luck with getting a second opinion.