Hi Ladies,
I’m 38 years old and had grade 3 stage 1. I had a lumpectomy and 5 nodes removed (all clear), but have been offered the choice of chemo (6 sessions 2 weeks apart so 3 months in total) then 4 weeks radio. I’m a private patient and my oncologist is sending my slides away to america for testing to determine my chance of reoccurance - has anyone else had this done? Did you find it useful? Would love to hear from people in same / similar position.
Sarah
Hi I’m in similar not same position. Am 45 grade 2 stage 1 but also clear nodes and also haveing radiation therapy for 4 weeks starting 30th Nov. Am also a private patient - not sure why they would have to send slides to America to decide on chance of recurrence? I’m not having chemo…told in my case/good prognosis it would cause more harm than good. I like to know as much info as there is so delved deeper as although was dreading chemo began wondering if I was “missing out” by not having it. Check out google or Macmillan for more on Scarff-Bloom Richardson scale (that determines more fully the grade of tumour) and the Nottingham Prognostic Index…both systems assigns scores to your particular tumour characteistics and I was told this numerical score is what is mainly used to decide on whether chemo is of added beneift and gives an idea of overall survival.
Bettina
In the US they offer the OncotypeDX test where a sample of your tumour is analysed to more accurately predict a recurrence, they then score this and either advise Chemo or not. There is a thread here OncotypeDX. It’s quite expensive, don’t expect this to be offered on the NHS soon… X
I was similar to you, but right from the start, even before the lumpectomy I was told that because of my age I would have chemo. (I’m NHS).
36 years, stage one, grade 3, no node involvement.
Mine ended up being pretty aggressive, had lumpectomy, margin clearance, 3 Fec chemos, then found a new primary lump (even while on chemo), changed to Tax, them mx, then rads, now tamoxifen.
Chemo is VERY tough and just horrible (yeah, yeah, it is ‘do-able’), but still horrendous. Great that you can get more info from America on your reoccurance chances. Look carefully at your survival stats, I think if it chemo gives greater than 5% it is worth looking at doing, much under that, you have to weigh up the toll it takes on your body.
I got the feeling that the NHS, because, of my age, were prepared to throw everything at it.
Might be worth me adding I’m strongly (8/8) ER & PR hormone positive so can also have Tamoxifen, planned at this time for 5 years. Chemo would have been “discussed” with me had I been Her2 positive in order to have Herceptin but I wasn’t. Although a private patient my consultant breast surgeon and oncologist both head up the teams at the local NHS University Trust hospital. I did ask about all the tests I’d read about in the USA (especially as their biopsy results are SO much quicker than ours)as well as more regular mammos and scans afterwards as they do there, but it is felt that there was nothing significant to suggest these “extra” diagnostic tools made a difference long term other than causing more anxiety for women each time waiting results etc.
May also be worth a look at NHSpredict…that shows “added value” in percentages when considering chemo and /or hormone therapy into the treatment plan…although my acid test was asking the consultant if it was his wife or daughter would he suggest chemo and he said “No”.
B
Hi Sarah I have put a link below about oncotype dx testing,I think you are lucky to be able to have the testing done as tina45 already said it is very expensive and you wouldnt get offered it on NHS.
breastcancer.org/symptoms/testing/types/oncotype_dx.jsp
Hope you get good results. best wishes Melxx
Wish I had known about this test. Very expensive but well worth it if it gave the right result. NHS should offer it to women, it could save so much money in the long run.
yes it should be offered NHS but it all comes down to the same old thing money.But as you say it could save in the long run and could save some women from having to go through chemo, and would also tell what women would benefit from chemo who would otherwise have decided not to have it.I was stage2 highly ER+ and PR+ quite small tumour 17mm but the little buggers had made their way to one of my lymphnodes so it was chemo for me anyway.
Melxx
Just some extra info for consideration - This is taken from the American Cancer website.
the Oncotype DX® and the MammaPrint®
Usefulness of these tests: While some doctors are using these tests (along with other information) to help make decisions about offering chemotherapy, others are waiting for more research to prove they are helpful. Large clinical trials of these tests are now being done. In the meantime, women may want to discuss with their doctors whether or not these tests might be useful for them.
The test estimates risk, but it cannot tell for certain if any particular woman will have a recurrence. It is a tool that can be used, along with other factors, to help guide women and their doctors when deciding whether more treatment might be useful.
The test is around 3400 and in light of the above I can see why the NHS may think it a better investment into actually using the money to detect and treat women rather than paying out for this test.
I accept not everyone has the same tumour markers as myself and may not have the same prognosis given to them but I’d hate this site to give women the wrong impression and lead them to think that they are missing out on some test to help with treatment of choice (or choice not to have it) because of finances…The point I was trying to make earlier was that I am a prviate patient and therefore cost not an issue but I’m not having the test - there is no point as it won’t give conclusive information over what is already available. As the Oncoptype DX is a private test the number of participants in studies of which results are used in research, is far lower than studies used in the NHS so figures/conclusions as to usefulness in predicting anything may be skewed.
B
Thanks to everyone for your comments / views and for sharing your experiences with me, it really is a welcome change to hear from other ladies sharing this experience life has delt us…
Sarah xx