I’ve met with my Oncologist Dr M, twice this week. The first meeting on Tuesday - I’ve got to be honest - didn’t go well. He was very personable, very pleasant indeed......but I came out of our meeting feeling confused, none the wiser as to what happens next & - without Carol my BCN, (Breast Care Nurse), who is away for two weeks – a little bit lonely!
When I was first diagnosed with breast cancer I was told that treatment wise, they were going to ‘throw the book’ at me, mainly because of my age. All along they’ve given me worst case scenario which in some ways is great, especially since my results since surgery have come back as so positive. But, when they tell you that you need as much protection against the cancer coming back as possible & then start ‘taking away’ some of those protection measures....it’s a bit scary.
Right from the start, chemo & radiotherapy have been mentioned in EVERY conversation that I’ve had with the medical team. They’ve been promoted as a ‘protection’ rather than a treatment &, bearing in mind that I’m still only 38, obviously I want as much ‘protection’ for the future as possible, especially because my daughter is still only 3 – I want to be around for as long as I can be!
Radiotherapy has been deemed ‘unnecessary’. I can live with because my surgeon has already told me that the mastectomy was the right op for me because otherwise, they would have had to take two thirds of my breast because of the wide area of ‘non invasive’ cancer spread; cosmetically, there’s not much they can do with the one third that I would have been left with but, this also ensured all of the disease was taken away. They were ‘confident’ they had removed everything so, no ‘Rads’ needed.
With chemo, well, Dr M said that on paper, I am ‘at low risk’ of the ‘invasive cancer’ coming back & that the negative side effects of chemo would outweigh any benefits that I might receive. This is the grey area. In cases such as mine, there is debate as to whether chemo has any benefits at all so therefore, is it even necessary as a protection measure?
I understood all of this &, I understood that I would still have anti-hormone treatment in the form of Zoladex, (for 3 years) & Tamoxifen, (for five years), I would still have 6 monthly check ups for a while, mammograms every year ‘til I’m 50 then, I’d be placed on a ‘pre-screening’ programme......they do take this disease seriously, there’s no doubt about that. & I know things advance in medicine all the time. Not long ago people had to fight for certain drugs in certain areas & some still have to now but, when chemo has been the norm for so many years you kinda start thinking it’s the only way to go.
So I have a choice to make. Because they can only offer &/or recommend a course of treatment; you have to make the final decisions yourself. & this is why I feel confused. Dr M said he would ‘not normally offer’ me chemo but I’m young & did have a large area of non invasive cancer for a young person. But they don’t normally offer chemo for non invasive. & if the cost of the Oncotype DX test were to come out of his budget – which it doesn’t; the funding for this trial, £2500, comes from the 'Drug Company' that have ordered the trial – then he wouldn’t pay for it! He’s so confident of me being in a ‘low risk’ group, he says anti-hormone treatment may be enough on its own.
So I came out of that meeting on Tuesday feeling as if 'someone' spending £2500 on an extra test - to see (a) what the chances of the cancer coming back in the next 10 years are & (b) whether I'd benefit from chemo or not - was a bit of a waste of everyone’s time & money. Cos I'm so predictable! I seem to be text book.....
But, I’ve never been predictable in my life! With the best will in the world & even with my ‘positive thinking’, my life is just always full of twists & turns, nothing’s ever simple & indeed, on 1st February this year when I went to get the results from a ‘core biopsy’ (which I had after I’d had a ‘suspicious’ mammogram & two needle biopsies), I was told I would be, so - therefore I expected to be - told that, the lump I’d gone to my local GP with, way back in December, was a cyst that had calcified (with nothing to worry about) - & then I’d be discharged.
Except, as you all know, it didn’t happen like that; so here I am.
So, forgive me for using £2500 of the good pharmaceutical company’s money for my own selfish means when there may be, someone a little less ‘textbook’ than I am but........ I NEED TO KNOW. I need to have it confirmed, once more, just to be sure, that I am low risk & that I can definitely avoid the chemo. I want to be sure that I am having the correct treatment even if that, in the end, means crappy chemo; which no-one in their right mind would want.
So I rang one of the Research nurses attached to Dr M’s department & to the Oncotype DX trial & I spoke to her at length about what it all entailed. & after that conversation, I decided that I am definitely going to take part in this trial. They can send samples of my tumour to California (pity they couldn’t send me too!) & in three weeks time I’ll have the results & I hope, that I’ll be able to make a more informed decision as to what I’m gonna do treatment wise. This test is widely available & fully licensed in America already & plays an important part in deciding individualised treatment plans. The trials I’m taking part in form part of a study where the findings will hopefully mean that the test will eventually be available here & in Europe.
So it all sounds pretty good now. I met with Dr M again yesterday & we clarified a few points. He’d thought I wasn’t interested in the trial AT ALL & I thought that (a) he didn’t want to waste £2500 on me & (b) that I definitely wasn’t having chemo. Lots of misinterpretations on both sides! Phew! I’m glad to say that I now know that Dr M is fully supportive of the trials & will base my treatment plan around the results. & chemo may still be part of my treatment plan.
We'll just have to wait for the results to come back now.......
That’s the thing with cancer though. There’s a lot of waiting around for results. There’s soooo much information that you have to take in, I suppose the waiting gives you time to come terms with it all & work out how you’re gonna deal with it.
It is starting to get to me a bit now though, it’s got to be said. I am sick of going to hospital, sick of not being able to do much & sick of the word cancer!
Saying that though, what’s another three weeks? I’ve got to get better as soon as possible but safely! Three weeks will give me time to heal a bit more &, if I don’t have chemo, I can start the meetings regarding my reconstruction! I won’t be able to have it done until about September but it gives me something to aim for & is another step closer to feeling ‘normal’ again.
Which is what all this is about now.
Feeling normal & getting on with life. The sooner the better I say! But I’ve learned my lesson with being impatient! Turns out I did overstretch the scar tissue around my wound when I injured myself at the weekend. It does need to be stretched but slowly. So i’m back on stronger painkillers for now.
& obviously they’re making me ramble! So much has happened in the past couple of days & I have been so tired after going to the hospital twice in two days that I haven’t done much apart from sleep.
So this has been my first chance to bring you up to speed with what’s happening. I’ll be off work for a few more weeks but when Carol, my BCN is back, I’ll have someone to help me sort through the medical stuff & by that time, there will only be about a week left to wait for the Oncotype Type DX result.
In the meantime, I think I might make a start on some of the box sets my sis, Leah, sent to down to me. The Sopranos are looking good I think.......I still refuse to watch Jeremy Kyle! In fact, I refuse to watch ANY daytime TV at all!
Until tomorrow peeps, love Chez. xx
