Hi I had a bilateral xm ten days ago and have just had my pathology results. My nodes are clear and I am hormone +ve (aged 45) so will be on ten years tamoxifen but no radiology. However I have an appointment to see oncologist on 4 February and have been told I would be a candidate for this test to decide if chemo would be of benefit to me. The snag is its. It available on NHS yet ( will be in the future I’ve been told) and so as am going to have to borrow the money from my parents - it’s about 2k, It will be a big decision whether to have chemo - I am her2 negative. And a single parent to teenage girls ( and 19 at uni) . Has anyone had this test and did you find it helped in the decision! Did anyone decide not to have chemo because of the % risk?
Many thanks
sarah
Hi Sarah
Hope you are recovering well and not hurting too much. It was initially suggested that I take this test, although later it was found that my tumour was HER2+ and so could not have it. That being said, I did do some research. The result is on a scale of 0-100, I believe with over 31 being considered high risk so my dilemma was, at below 31 where is your ‘tipping point’? I am sure that the oncologist will guide you in your decision, but I have to say that the whole idea messed with my head! One question that I intended to ask was, even if my score was only say 10 and therefore if chemo is not recommended, would having chemo still reduces the chances, eg, reduce the risk to like 5? I also investigated the company that does the test in California, where there is more information available.
breast-cancer.oncotypedx.com/en-GB/Patient-Invasive
Sorry if I am messing with your head too.
Lynny
x
Thx gilly - my understanding is tgat NICE have recommended so it will be available on nhs but not yet - but is available in Ireland and I think some people have campaigned - I’m textbook for the test and would like to try it. It’s 2k versus approx 5-10k that trust would pay for chemo … A no brainer for me if it provides patients with more info to decide about chemo which we all know isn’t exactly a walk I the park ( none of this is!) I’ll fight to be an appropriate circumstance!
Ps I’ve been told the oncologist will discuss the test with me in feb x
Hi Natalie - I’ve done a bit more research and there is a study out laterin 2015 which has mapped the test against mid range - evidentially low range and high range has been evidenced before . However, like your friend - it’s understandable why people still lot for chemo. I understand that the test is standard in many states in us now including New York - it’s really another tool to help guide us and I am grateful at this stage to have a bit more info - if the rest came back high I would know its the right thing to do. My worry is the mid range - shame the results aren’t out yet- if only I could have timed my cancer better lol . Good luck to everyone making this decision
Morning sandie! Looks like we were posting same time xxx
Yep - it’s a false economy there are only about 6000 women who fit the bill for this test annually ( no pun intended)
S
Morning Sarah
Have been thinking about this blooming thing again. Another question for you - what if you have to pay for it and still do not get a definitive answer, i.e. what if you are around the tipping point and the oncologist then says the decision is yours? Sorry - told you it was messing with my head, and it’s not even on the cards for me now! It is amazing how your mind wanders during the night!
Lynny
x
Hi ladies
People following in our footsteps will be more fortunate ~ the more I have dwelled the more I want this test and like chez won’t have the energy to fight for it on nhs - but I will do afterwards so others don’t suffer this. I’m lucky my parents can lend me the money and I can pay them back slowly. My take on this test is that if it gives me a - you need it score I will be reassured chemo defo required- if it gives me a low don’t need score it is saying that my extra benefit doesn’t warrant the chemo and I will trust that - mid range is my ‘mess with head dilemma’ but if I don’t have the test I won’t have all the info that is available to me. I’ve lost both Breasts suffered emergency surgery for blood clot - I run out of pay in two months - I don’t feel I can make a chemo decision without the info now I know about the test. Of course I might still decide I need chemo but I need the info to calculate the risk to me. Hopefully I will be able to psychologicAlly work out whether my personal tipping point is lower or higher? Who knows - but I love the phrase tipping point! It helps me get my head around it x
Ps Cheryl I’m 45 and will be on tamoxifen inducing early menopause ~ sorry to hear of your added complications it makes everything so hard but I don’t think you’ll regret taking the test if it gives you a bit of reassurance one way or the other x
Defibateky Cheryl xx
I was borderline for chemo and did go on to have it. I enquired at the time about a clinical trial for the oxytype dx test that is shown on the cancer research site. If you put in the search “optima” it should come up. It is only available in some hospitals but might help out some ladies in our situation. It says the trial runs until April 2015.
I was told I couldn’t go on this trial, there was problems with it at the time. I decided, even with the small % advantage I was quoted with having chemo, to go ahead. It was hard going and unfortunately I was advised to stop after 4 sessions due to being really ill and any more I was told could prove fatal!!! However I do not regret having chemo and was gutted when I couldn’t finish my quota. I’m now onto radiotherapy and letrozole. I had to stop taking tamoxifen because I developed a blood clot in lung!!
Let me know if you have bother finding the trial information.
Good luck xxxxx
Hi Cheryl
Just wondering how you got on today?
Best wishes
Sarah