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Oncotype DX vs just going for chemo

3 REPLIES 3
Egret
Member

Re: Oncotype DX vs just going for chemo

Thank you Seebreeze, I am borderline with my first onc appointment next week. What you wrote was very helpful.
Seabreeze
Member

Re: Oncotype DX vs just going for chemo

Hi Storminadcup,

I totally understand what you are saying, and can well imagine the swirling vortex of confusion.

Sounds like you are experiencing the other side of the coin to how my experience panned out. Like you I was initially told by my consultant onc from the surgery team that I needed radio and tamoxifen, and that I did not need chemo. Weeks later in my first meeting with the onc for adjuvant / radiotherapy the onc somehow misheard my concerns about tamoxifen as a concern about whether I needed chemo. This became apparent when she said I was borderline for chemo and she was happy to discuss that at some point if I wanted to. My mind was so full of questions about radio and particularly tamoxifen that somehow I didn't query the borderline chemo comment at the time. Then started radio...and what feels like many moons later read a post on the forum on a strand called something like to chemo or not to chemo (you might want to have a look - the comments may ring true for you and help you in some way). The post I read was from someone who had been told that according to adjuvant online they had a 3% increased survival over 10 years if they had chemo. This reawakened the line in my head that I was borderline for chemo and I started wondering how borderline and if others who had a 3% increased chance were offered it as an option, why I hadn't, all things going through my mind, primarily thinking it must have been a mega low increase in survival given they didn't offer it or tell me I should have it.
So eventually, a few months after radio had a follow up meeting to find out what/why borderline. I was informed that if the increased survival is less than 5% over 10 years chemo is not usually offered, primarily due to the impact on your body and that all these stats don't factor in general health etc (ie all the non breast cancer factors). I found out that I had only missed the 5% factor by rather a small decimal place...
The onc was adamamant that I really would not have wanted chemo re impact on body.

How all this made me feel - the most frustrating point for me was that no one mentioned the oncotype test and I hadn't come across it in my epic googling missions! If I had have been told just how borderline I was (more like wobbling over the top edge into chemo than halfway up the fence) I would have wanted to checkout the oncotype test since apparently its a very good measure re how likely chemo will help. It's all too late now since for chemo to be most effective it needs to be close to op time, not months later after radio!

So if, and I hope this never happens, I was ever to get a recurrence, I would want the figures and if close to borderline would probably pay for the test. Had no idea it was that expensive. Are you sure it's not available on the NHS yet?

My radio onc said that for some reason the surgeons tend to use NHS predict online re stats, and adjuvant onc's tend to use adjuvant online. The 2 systems use stat's figures in slightly different ways (different bands) so figures for me are slightly different between the 2, survival higher on predict online than adjuvant online, and increased survival with chemo slightly lower on predict. I have no idea if this is true but wonder whether maybe the different leanings of the surgeon team and adjuvant onc teams make the adjuvant onc teams tend to be more pro chemo for borderlines than surgeons? Now it's me asking if that makes any sense!

Everyone is different and has to weigh up everything for their own situation. I think in a way this makes it harder if you are borderline / asked if you want it / or the test, since it is easy to put pressure on yourself re decision. If you have a strong feeling to go one way and have chemo I'd say go with that feeling, but maybe I'm only saying that since I was so mega borderline and not even informed that I was so close!

I really hope something in the above helps in some shape or form, feel for you, it's not easy but I'm sure the spirally cloud of confusion will lift once you have decided. If that means going back and asking more q's then do. That's my one regret from my angle.

Seabreeze x


Carmen42
Member

Re: Oncotype DX vs just going for chemo

Hi,

I had the oncotype-dx test and came back in the high risk category so obviously went for chemo. If I hadn't had the test I would still have opted for chemo. My surgeon is a great believer in the test and firmly believes that a low risk result means there would be no benefit to chemo. You can find data on the internet that backs this up.

 

I do understand what you're saying about having made the decision to go ahead with chemo and if that's how you feel I wouldn't bother doing the test, especially not if you have to fund it yourself! I don't think many people on here have had it, I don't regret doing it (the hospital funded it for me) and I'm fairly sure I would have turned down chemo if I'd had a low score.

 

It's not an easy decision to make, good luck xx

storminadcup
Member

Oncotype DX vs just going for chemo

Well this storm is becoming a bit of a swirling vortex of confusion.

 

Last Friday I was told by my consultant that the MDT team recommended radio and hormoe treatment.

Then called in yesterday to be told they were now adding in chemo.

Today have had a call suggesting I have the Oncotype DX test (cost £2600).

 

So having just got my head around having chemo and planning everything out I am now wondering whether this the thing to do.

 

Feel in part that I have already made the decision to hit the chemo and handle the side effects so even if a test comes back and says risk is low don't need to go for it I still would want to.

 

Can anyone understand what I'm saying?