Waiting for Oncotype results / Predict tool prognosis

Hi all, 

I am a little over 5wks post-mastectomy (a Grade 2, Stage 2, 65mm tumour with pagets disease of the nipple. ER/PR positive, HER2 negative. Lymph negative), and I’m finding the wait for the remainder of my treatment plan excruciating such that I can’t focus on anything. I like to plan my life, good and bad and feel like I’m living in limbo living one day to the next. I can’t book a hotel for my friends 40th, make plans for my birthday next month, or look forward to a long booked holiday in June, knowing that I might not be able to make them if I need chemo.

When I went for my first oncology appointment, I wasn’t really told anything other than we needed to do the Oncotype DX test (why wasn’t this done earlier, not sure why I had to drive for an hour to just be told that?!). Does anyone have any recent experience on how long these take to come back? I’m at 15 days waiting now…

Also, whilst I can see how useful the Predict tool is for determining prognosis and how beneficial additional treatment is, how do you know if your prognosis is good or not when compared against others with breast cancer? For example, I am 40yrs old and the Predict tool says that 15yrs post diagnosis there is only a 64% chance that I will still be around (for surgery only) this seems scary low, but is it?

I’m sorry for the rant. I am usually a positive person and have been so strong and level headed about all of it, including losing a breast (I can’t have reconstruction until I have completed radiotherapy), but this waiting is driving me insane…

Thank you, 

Pippy xx 

Hi Pippy

I think almost all of us can identify with your situation. I think that the waiting is one of the hardest things when it comes to breast cancer but, to be frank, this is just the start. Waiting is an unavoidable part of treatment, whether it’s waiting 2 hours for a simple blood test, waiting because your records have gone astray (even though it’s all online anyway) before you can have your chemo - or, hardest of all, waiting for results. I had to wait over three months for a particular test!

I can’t say how long you have to wait for the oncotype dx test as it depends what facilities your Trust has but it is essential to get all the data before finalising a treatment plan. In your case, being lymph negative may mean that they won’t recommend chemotherapy - or, harder, they’ll offer you the option. This is where the Predict tool comes in and, frankly, I don’t think patients should be advised to look at it. It’s just statistics and each of us is unique. The statistics are alarming! 64% survival over 15 years is actually quite good odds since it is surgery only. But if you consider those odds too low, there will be options, and the radiotherapy (which is considered the most effective all the adjuvant treatments).

Breast cancer is not easily forecast. No one can be sure how a cancer will behave, treated or not. And you can’t compare yourself to anyone else. Especially nowadays when even our DNA can determine what particular treatment we’re offered - and how we respond to it. I for instance now have secondary breast cancer because one of my tumours was triple negative, the most aggressive of the breast cancers and the treatments didn’t quite catch it all. The prognosis on diagnosis (which I discovered by accident, I wouldn’t have asked) was 9-13 months. Two years on, I’m still on my first line treatment and the department is bemused at what is/isn’t happening. So don’t rely on the statistics, except as the roughest guide.

I would offer two pieces of advice. First, carry on as normally as you can. Get those celebrations booked. Check your holiday insurance but, if you do go for chemo, ask the hospital how it can be fitted round your holiday. People do get chemo-breaks for many reasons. And work on your resilience skills because you are going to need them, particularly with the waiting. Mindfulness, meditation, diaphragmatic breathing, all these things truly do help. I wouldn’t have got by without my daily dose of Progressive Hypnosis’s meditations (free on YouTube). If you do go on to radiotherapy or chemo, you will find it invaluable.

Also, don’t apologise for what are perfectly normal and natural emotions. Some get angry, some collapse in a ball of sodden tissues, some blank it all out. This is not being un-positive (negative is the wrong word!). You are under no obligation to maintain a stiff upper lip, don a pink tutu and run a marathon, worthy though such actions are. Being positive to me means accepting where you are and where you are going, regardless of how you feel, trusting your team and just getting through to the other side, as you will, making the best of a rotten job. Having cancer doesn’t mean the world comes to a halt so enjoy those birthday celebrations.

Wishing you all the best for a good outcome,

Jan x

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Hi Pippy

I had to wait a total of 9 weeks from surgery to get my oncotype dx results back and was told the reason for this is because the tumour is sent to the USA for the test to be done.  I agree with you that the wait is a nightmare and what your feeling is totally understandable, I’m a planner and not being able to plan is excruciating.  

Wishing you well Alison xx

I got oncotypeX results back in about three weeks. The samples are sent to the USA so it does take a while for them to do the tests, record them and send them back. My score was 14. Using the Predict model I have a 55 per cent chance of living 15 years if I have surgery alone.

I am 67, and I worked out my normal life expectancy at 65 is 21 years i.e. 86 so I don’t have much time left with or without breast cancer. Both my parents have lived to over 95 so I may surprise the predictions - or not. Individual lives don’t conform to averages.

My husband could murder me which would confound the actuarial tables. Having breast cancer has convinced me quality of life is more important than quantity. My mother has dementia. That has some awful side effects. It upsets me that I can’t support her enough now and as a result she’s now in a nursing home. It’s not what I wanted for her. 

Seagulls

I know im very late coming into this thread and i for one am my own worst enemy, i walked out of my axillary clearance because i couldnt handle the stress but…

What i have forced myself to learn this week is that life is a bloody lottery, all of us need to try and not get bogged down in the whys and what ifs, easier said than done i know ( believe me)

We’ve all been bloody unlucky and we just need to keep supporting each other through it the best way we can, wether thats swearing, or punching a pillow or regretably like me still sucking on my vape. And if all else fails go to the gp, mine gave me some amazing tablets for when the pressures getting too much. 

Im positively on edge awaiting my next axillary surgery because god knows what they’ll find lurking in there and i actually don’t know if im giving this advice to others or myself, tbh probably myself!