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Oncotype score

12 REPLIES 12

Re: Oncotype score

I'd have the chemo and I'd start now organising your fertility stuff, rather than waiting for your test results, if you assume you are having the chemo, you can get it all underway. There's a natural ivf that has less drugs involved, so less hormones pumped not you, and it depends where you are on your cycle. Start the ball rolling ASAP with your ivf. It's easier to cancel it if you decide you don't need it than try and urgently get it up and running.

Breast cancer cells can break off from your tumour and travel to distant parts of your body and that's when secondary cancer develops. Chemotherapy kills those individual cells that may have escaped. It can travel via your lymphatic system, or in your blood, and doesn't necessarily leave evidence behind that it has travelled. There are indicators though that suggest your cancer may have tried to travel. Cells in your lymph nodes are evidence, hence it being a threshold for chemotherapy at many treatment centres. Vascular invasion is another indicator of it, as your tumour has been trying to spread/get itself a blood supply. Tumours over 2cm are more likely to have spread too, because of the nature of how cancer tumours work and the stage they get to when they need to move outside of themselves to survive (this is my own way of explaining technical thing that happens which has many fancy names!). Also, you are young, our cancer is less predictable in outcome than other cancers, and we sadly often end up with outcomes which buck what the statistics would have expected. I'd personally be beating their door down to get chemo, I'd be doing everything I could to preserve my fertility, and I'd be making sure I'd done everything I could do to ensure I was around for my little girl and my new baby in a few years. Sorry to be so blunt, but I think you are looking for genuine views so you can weigh up your decision. xxx

Re: Oncotype score

Even though my tumour was under 2cms and was removed with clear margins, no vascular invasion, and no lymph node involvement, I am still having chemo because it was a grade 3 and HER2+++ I am quietly terrified of the chemo but am happy to have everything possible thrown at me to try and get it all out of my body. I am far too old to have any fertility issues though, and it must be a very hard decision for you to make. Good luck with whatever you decide. xxx

I should add that my NPI (Nottingham Prognastic Index) score was on the path report I received after surgery!!
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Re: Oncotype score

Thanks for the advice everyone. Really helpful, especially the links and I do think that taliking to people who have had to make the same decision would be really helpful so I will look into that.
Egg harvesting has been discussed but because my cancer is so strongly hormone driven I decided against it. I believe that in order to harvest the eggs you have to take hormones. I asked the nurse if this potentially posed a risk for me and she said yes. So for me I decided against it as I just didn't feel comfortable taking that risk.
For me, all the waiting and decision making is the worst part of all this! The physical things so far have seemed minor in comparison! Maybe I'll change my mind on that if I decide to go ahead with chemo!
Thanks again for the support and I hope you all are doing ok.
xx

Re: Oncotype score

He he, good joke Lozza. hugs to you too.
pg xx

Re: Oncotype score

Poemsgalore - Not from Notts lol! (sorry couldn't resist!!) - am Hampshire based.
Hugs to you
Lozza xx

Re: Oncotype score

Twnks, I never had the oncotype test, was just told that it was up to me whether I had it or not, as it could benefit me. As I had a lymph node removed with cancer in it I decided to go for it. Never thought of vascular invasion, but notice that my blood tests also look for tumour markers. All the best.
Lozza, are you from Notts like me?
Poemsgalore xx

Re: Oncotype score

Hi Twinks

Like you I had WLE for a grade 2 IDC which was 2.5cm, no nodes, no vascular (I assume as it wasnt mentioned) and ER+. I was offered the choice of chemo and I asked my onc re the Oncotype test - his view was that the validity of the text is not proven to his satisfaction so he would not put me forward for it although I Know others who are at the same hospital (different onc) who have had the test, so guess that is just his view.

That meant that I had to make the decision without the test but to be honest, I don't think it would have swayed me anyway and I didn't push him for it. I chose to have the chemo without hesitation as I didn't want to risk any regrets in the future but I am 52 so fertility wasn't a issue for me so I didn't have to take that significant point into consideration.

I really feel for you having to make such a difficult decision.

Jayne x

Re: Oncotype score

Dear Imke,
I was told I could take the Oncotype test to see if I needed chemo back in May of 2012. On the face of it my Onc felt I was borderline for benefitting from chemo but I found it a very difficult decision to make - the hardest when I felt very ill equipped to make it. One of the things I did was contact Beast Cancer Care and they put me in touch with 2 women: one who had chosen to have chemo and one who had chosen not to. I was able to have a telephone conversation with both about their decisions and the longer term implications (both were many years out of treatment and doing well) - all this happened within 24 hours of contacting BCC, a fantastic support in my opinion. These 2 women did not try to tell me what to do or influence me but told me their story and answered my questions from their personal perspectives - it really helped to talk to someone who had faced a similar decision
I had 1 lymph node affected and in the end, taking everything into account, I opted to continue with the standard treatment for someone who was node positive and I had the chemo. As I was 49 I did not have the additional complication of fertility to take into account. So my recommendation is to contact BCC and see if they can help you find someone to talk to about your options. All the best,
Helen

Re: Oncotype score

Here's the younger linked link
http://www.breastcancercare.org.uk/community/forums/younger-women/facebook-network-younger-women-diagnosed-breast-cancer
Lozza xx

Re: Oncotype score

Hi Twinks77
There are some threads already on this site relating to fertility as well as this booklet. Either look at the index on left hand side of page or use the 'search' facility. There is also a Facebook page for you younger ladies!

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/fertility-issues-breast-cancer-treatment-bcc28

I also had WLE/SNB for IDC which was downgraded from 3 to 2 with a tumour size of 2.1cm with no nodes affected. My onc said that I scored a 2 on the NPI (Nottingham Prognostic Index) they use and chemo is not offered if you score under 3 as only a small percentage would benefit from taking it. I had mixed feelings about not getting offered it - which is probably normal. I just hope that I don't turn out to be one of the ones that would've benefitted!!
In the end you just have to choose what feels right to you out of the choices given to you.
Sending positive vibes and hugs 😉
Lozza xx

Re: Oncotype score

Twinks,
I dont know about onco type tests, but if you were to opt for chemo, could you not undergo eggs harversting first? I have read of other young BC patients having this done?
Barb xx

Re: Oncotype score

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Oncotype score

Hi everyone. I am looking to get some opinions from anyone who may have had to make the decision whether or not to have chemo. I have recently had a WLE for a grade 2 2.4cm tumour, no nodes and ER pos. I was keen to have the oncotype test to see how much chemo is likely to benefit me. I am currently awaiting results to determine my score. However, the more I think about it the more I think I may be happier just to go ahead with the chemo even if the score is low as I want to feel I've done everything I can to prevent a recurrance, especially as I am relatively young at 35. It has also been mentioned that I have vascular invasion which also makes me feel that chemo might be for the best. The big issue I'm struggling with against the chemo is fertility. I am blessed with a 5yr old daughter but dearly wanted the opportunity to have another. I have been told that the chemo will quite likely affect my fertility so I do want to make sure that it will benefit me. It's obviously not the end of the world if I don't have another child because most importantly I need to be around for the one I have so don't want to take any risks that might jeopardize that!
i just wondered if anyone else had had the oncotype test and how it affected their decision to have or not have chemo. Obviously I will be going on to radiation and tamoxifen afterwards regardless.
Thanks
Imke