confirmed recurrence, help needed please!

nikibird
nikibird Member Posts: 23
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

hi,

i was diagnosed with stage 1b 8 years ago,no node involvement, treatment was mastectomy, oophrectomy, no radiation or chemo.

now i have a lump on my clavicle, biopsy confirms recurrence of highly estrogen receptive invasive. at first, they told me my scans showed no 'definitive' spread, and treatment would begin in a week. chemo and radiation, and then arimidex.

2 days later, i am being told that they are reconsidering, there are some spots. 1 on right breast bone,  1 on lung, 1 on skull, that may not be anything, too small to tell.

but because of this, they want me to go for a pet scan, and this will take 4-6 weeks and no treatment until then.

I DO NOT UNDERSTAND why we can't begin treatment anyway, we know i have a recurrence.

he said that the treatment regime would be 'different', not as agressive, were it stage 4.

does anybody understand this, cuz i don't!!  i just want to start fighting!!!

thanks

sharon

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Comments

  • chrissyb
    chrissyb Member Posts: 16,818
    edited March 2012

    Hi nikibird so sorry that you are dealing with all of this again but I understand.  If those small possible mets that would put you at stage IV they don't want to get too aggressive because as a stage IV some oncs treat palliatively ie not to get a 'cure' but to keep you stable and slow down the cancer spread.  If you are not happy with this I suggest you find yourself an onc who will treat aggressively and aim for NED (no evidence of disease).

    Good luck!!!

    Love n hugs.  Chrissy

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  • nikibird
    nikibird Member Posts: 23
    edited March 2012

    thanks for your response Chrissy,

    is this the norm for treatment?  wouldn't aggressive treatment slow it down more quickly?

    i see that you have been stage 4 for awhile now, do they still treat you with chemo and radiation?

    hugs back!

    sharon

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited March 2012

    Sharon I get radiation to the bone mets when they become extemely painful and so far the hormonals are still working for me but evetually I will be given chemo but at a lesser dosage than if I were newly diagnosed as I would have to be on it for a long time.  The way they treat stage IV is with easier treatments first and leave the harsher ones till later.  Sometimes this way of thinking doesn't work and they have to get a little more aggressive but the idea is always to give as good a quality of life as possible.

    You would be surprised at how effective some of the gentler treatments really are.  Being supper aggressive when stage IV is not usually the norm as most of these treatment are extremely harsh on our livers and if it is damaged beyong repair, then no matter what the treatment is, it would have to be stopped as your liver would cease to function.  Because of the length of time on treatment (ie the rest of your days) gentle easier is far better.

    Love n hugs.  Chrissy

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