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Member
Posts: 312
Registered: ‎20-07-2017

Re: Agonising wait for result of Oncotype dx test

It's really rubbish isn't it? So hard to try to explain it to people who - thank goodness - are not in the same situation. The anxiety is overwhelming. I am trying to hard to bury myself in my work, as a distraction, but my concentration levels are dreadful.

Community Champion
Posts: 3,165
Registered: ‎17-03-2016

Re: Agonising wait for result of Oncotype dx test

Waiting is such the pits Rosie, it's something we all struggle with, at least you come come & rant here. It's not uncommon for friends not to get it & I think we've all had surprises on that front.
hugs
hugs
ann x
Member
Posts: 1,751
Registered: ‎21-06-2017

Re: Agonising wait for result of Oncotype dx test

Hi Rosie, I'm feeling the same as you about my CT scan results and worrying that the cancer has spread somewhere else. Finding it hard not to think about it and not sleeping well either xxx

Member
Posts: 312
Registered: ‎20-07-2017

Re: Agonising wait for result of Oncotype dx test

Not coping very well with this wait. It's been one week so far and due to my consultant being on holiday next week, I now have another two weeks to wait. Utterly subsumed by this, not sleeping well, no appetite, even shouted at my adorable dogs today.

 

Tried to share my concerns with a friend today but she just responded by challenging my point of view about chemo. Not helpful. 

 

Just wish I could park this in my brain until the result comes, but it is proving impossible.

Member
Posts: 129
Registered: ‎19-03-2016

Re: Agonising wait for result of Oncotype dx test

Hi Rosie,

 

I was in exactly the same position as you early last year. At first I was told that it would be a lumpectomy plus radiotherapy and Tamoxifen, no chemo if my nodes were clear (which they were) to suddenly being told that chemo was a possibility and having to wait nearly 3 weeks (due to Easter being in the middle) for the resilts of the Oncotype testing before a decision would be made about chemo. It was the hardest wait and probably my lowest point throughout. My score came back at the high end of intermediate (28) but also as oestrogen negative. This was retested at The Marsden and confirmed to be positive but the false negative could have resulted in the higher Onco score. Anyway, it was decided that any benefit of chemo would be outweighed by the risks and so I didn't have it.  I really wish that chemo had been mentioned at the beginning rather than suddenly thrown in later, I think I would have coped better.

 

I am now 18 months down the line and last year is just a memory, as it will be for you too before you know it.

 

Thinking of all you ladies waiting for results and wishing you all well.  Michelle xx

Member
Posts: 325
Registered: ‎21-07-2017

Re: Agonising wait for result of Oncotype dx test

Are your ovaries responsible for the oestrogen?  I get the impression that after menopause (as I am) the ovaries don't produce the estrogen, it comes from somewhere else.

 

I am very interested in your research - I have been doing the same.  Maybe we could start another thread somewhere... under treatment?

Member
Posts: 38
Registered: ‎06-07-2017

Re: Agonising wait for result of Oncotype dx test

Good for you. Mine is oestrogen + so I've cut all cows dairy out of my diet. Through research I've also eliminated all red meat and sugar (this one slips slightly with dark chocolate and red wine but Jesus we all need something at this stressful time!!!) Bloody hard but if it helps!

I take tumeric each day (2 capsules) after talking to health shop manager where my friend works. Benefits are excellent re fighting cancer cells. Look at work that Chris Woolams has done - his book is now my new bible.

It depends what you're into but I find the diet side and natural remedies very interesting and will give up anything if it helps me.

I think it's really important to research everything thoroughly so you go girl!!!!

Love Alex xx

💗💗💗
Member
Posts: 312
Registered: ‎20-07-2017

Re: Agonising wait for result of Oncotype dx test

I think I have gone into professional / work mode on this - full risk / benefit analyis, full pros and cons analysis, getting hold of every statistic I can and researching my topic as fully as possible. Not Dr Google overdrive but just trying to source and understand the facts.

 

I am finding out some really interesting things along the way actually - currently investigating the possible benefits of turmeric supplements. I am trying to be as balanced as I can, although I know personal opinion will come into it eventually - and also a little bit of gut feel.

 

My consultant has already said I will be on Zoladex + Anastrozole, so I am also investigating Zoladex versus having ovaries removed.

 

Did I mention that my job involves research and data analysis??!!

Many hugs back.

xxx

Member
Posts: 38
Registered: ‎06-07-2017

Re: Agonising wait for result of Oncotype dx test

You're very lucky to be able to text consultant what a great person he is!! I agree re getting as much info as you can I'm doing same. I want to know absolutely everything so I'm in complete control. Sending hugs xx
Member
Posts: 38
Registered: ‎06-07-2017

Re: Agonising wait for result of Oncotype dx test

Same here Jencat. I get something new to contend with in every appointment I go to so now I prepare for bad news each time! 🙄🙄
Member
Posts: 312
Registered: ‎20-07-2017

Re: Agonising wait for result of Oncotype dx test

Can't decide whether it would be easier to know all the possible outcomes upfront, or to take new info on board as you go along. Certainly came as a BIG shock to me last week when chemo was mentioned for the first time. Such a shame, because actually, I had a lot of positive news in my post-op appointment last week but it has been completely overshadowed by the oncotype / chemo thing.

 

Resorted to texting my consultant this afternoon (in my defence, he did give me his number and said to text him if I had questions). He says he will let me know when the result is in, so at least I don't have to wait quite so long for the score. Very kind of him. Reckon he recognises a desperate woman when he hears one.

 

In the meantime, I am doing my best to really understand the pros and cons of chemo - factual evidence-based stuff, not personal opinion / experience. I am really not convinced of the argument for my having chemo if I have clear margins and no lymph involvement. So arming myself with information feels like I am taking back a bit of control in this situation.

 

Cake consumption soaring because of all this too!!

 

Sorry to rant. The waiting is so hard to cope with, for all types of tests isn't it?

xxx

Member
Posts: 1,751
Registered: ‎21-06-2017

Re: Agonising wait for result of Oncotype dx test

Hi benandflo, I'm in a similiar situation to you. Saw the consultant on Tues and he said I'm borderline for chemo as got 3 nodes affected out of 10. I sort of prepare myself for the worst as well now as each time I see the consultant something else seems to have cropped up! xx

Member
Posts: 38
Registered: ‎06-07-2017

Re: Agonising wait for result of Oncotype dx test

Hi Rosie.

I'm in same boat. Are you nhs or private? I'm private and waiting on oncotype dx results but only saw consultant Friday eve and tumour will be sent Tuesday. He said maximum 2 weeks wait. 😬😩 mine is stage 2 6cm with 2/9 nodes involved. The group that meet up to discuss cases say I should be facing chemo but my consultant wants to grade it with the oncotype first. My bcn says prepare for chemotherapy but it'll be a bonus if I don't have to face it. It's such a worrying time isn't it. I've kind of got used to this flaming waiting game now and I always prepare myself for the worst outcome so that any good news is a real boost. My husband thinks I'm crazy but this is how I deal with it 🤣
I hope the time goes quickly and I hope it's good news. Xxxxxxx
Member
Posts: 312
Registered: ‎20-07-2017

Re: Agonising wait for result of Oncotype dx test

That sounds like a very sensible idea. I have spent this afternoon with two lovely friends, planning our next holiday - so good to be talking about something other than BC.

xxxx

Member
Posts: 325
Registered: ‎21-07-2017

Re: Agonising wait for result of Oncotype dx test

Hi Rosie,  I got my appt letter today - 7th Sept.  Also because of the oncotype testing.  Crap waiting, but I am trying to find a cheap last minute holiday to go on in the meantime.

Member
Posts: 312
Registered: ‎20-07-2017

Re: Agonising wait for result of Oncotype dx test

I hadn't heard of the Haven Centres - thank you so much for the suggestion. I will look into it now.

xxxx

Member
Posts: 102
Registered: ‎15-07-2017

Re: Agonising wait for result of Oncotype dx test

Doesn't sound dumb at all rosietd.  My heart goes out to you.  

 

Have you thought of going to one of the Haven Centres at all?  Is there one in your area  I went to one last week and I am going for a 1-2-1 assessment next week.  Maybe some of the complementary therapies they offer such as Emotional Freedom Technique could be of help to you while you are having to do all this waiting. https://www.breastcancerhaven.org.uk/Pages/Category/haven-locations.  

 

x

Highlighted
Member
Posts: 312
Registered: ‎20-07-2017

Agonising wait for result of Oncotype dx test

A sample of my tumour was sent off for an Oncotype dx test last Tuesday. I was told the result would be back in 12 days but the appointment came through this morning and it is not for another two and a half weeks. 

 

I am absolutely agonising over the result of this test. I have coped reasonably well up to now (diagnosed 4 weeks ago, lumpectomy and IORT on Aug 3, post op appointment last Tuesday), but this one is tipping me over the edge, mainly because I cannot quite understand why I am being considered for chemo. My tumour was 3.5cm Grade 2, but I had clear margins and no lymph node involvement. To quote my consultant last Tuesday, I am cancer free right now, so it came as a total shock for chemo to suddenly be under discussion. I will definitely be doing hormone therapy anyway - zoladex + anastrozol - as I am perimenopausal.

 

I'm sorry if this sounds really dumb. I am just not coping well with this aspect and it is on my mind all day long.