I have posted this in a couple of places in the hope someone has also taken part in these trials!!
I’m 38, was diagnosed with BC on 1st Feb this year.
I had mastectomy to right breast on 7th March, I had a wide area of DCIS & an 8mm tumour (IDC), overall grading was stage 2 with no lymph node involvement (they took 7 nodes in a SNB at same time as Mx).
I’m Oestrogen receptor positive so will have some kind of hormone treatment but the medical team want my consent for these trials - I am more than happy to give consent, especially if it helps other people in the long run too. will have to wait 2 to 3 wks for results cos they’re sending my tissue samples to the USA for this test.
been told I won’t be having Rads & also may not need the chemo after the oncotype dx testing, just wondering if anyone else has any experience of this?
I thought chemo was a certainty cos of my age?
have also started a blog! it’s kept me busy whilst i’m recuperating from my surgery!
would love to hear from anyone with info on the testing tho…am really confused & a bit scared now that if i don’t have chemo, i won’t be as best protected as i could be.
Hi, can’t help with the trial, but age is not the main reason for chemo (it may be an additional factor) The main reasons for chemo seem to be node involvement, grade of cancer - definitely for grade 3, possibly for grade 2, vascular invasion. In all a combination of whatever type of cancer you have. So age might can come in to it, but would need some of the other factors too.
I didn’t take part in the Oncotype DX trial but I did have the test done - unfortunately my insurance company knew nothing about the test and I had to pay for it. Very expensive but in my case, well worth the investment. I have stage 1, grade 2 IDC (11mm) along with DCIS (13mm). Premenopausal, ER/PR pos, HER2 neg. Had a lumpectomy and STNB - negative nodes and clear margins. Original plan was radiation x 15 followed by tamaxifin. Chemo benefit was put at around 3-5% and was not recommended.
Anyway, something told me to do the test - I can’t explain it but I just thought it would be a good idea. The doctors all had a conference and agreed. At best, I’d have confirmation of the treatment plan. As it turned out, my score was at the highest edge of intermediate (29). This corresponds to a 19% risk of re-occurrance without chemo. With 6 cycles of FEC-T, the risk is reduced to around 5%. This showed a very clear benefit to having chemo, which I started yesterday. My onc told me she believes in the future, node status, size and grade will become less important in determining treatment than the Oncotype DX.
I’ve read that in 70% of oncotype tests, scores are so low that there is no benefit to chemo. Bummer that I was in the 30%, but so so happy I found out.
I’d say, if you have the opportunity to take part in the trail - GO FOR IT WITHOUT HESITATION.
Feel free to ask any other questions. Good luck and let me know how it goes.
Thank u so much for getting back to me! I have signed the consent forms today so that i can partake in the trial, i now just have to wait 2/3 wks to see what the results come back as & then at least i’ll feel better informed about making my treatment decisions.
Thanx again, I will deffo let u know how i get on.
I was just thinking about you and wondering if you heard anything. I guess today is the big day - do let me know, I’ll be checking back all day. Whatever happens, at least you’ll know you made the best decision based on the best information available today. And if, like me, you get a high(ish) score, chemo isn’t too terrible. Yesterday I had my second round and feel okay. My onc thinks I may just sail through it. My hair is a different story altogether. I tried the cold cap but my hair is massively shedding - just falling out everywhere (including my laptop, which is seriously annoying). But, in the spirit of making lemonade from lemons, I’ve bought two wigs. One is long and totally glam - real hair from Russia - I’ve named it Natasha. The other is from Top Shop, short and sassy - named Victoria. So the silver lining is I get to have long hair and short hair and not commit to either. Lemonade!!!
Ha, your post made laugh! Lemonade!!
Or Vodka!! cos that’s what i’m having at the moment with some fresh orange juice! Sod the links to breast cancer (for today anyway!), i need a drink!!
My score was 20 which equated to a 13% recurrence.
I think that’s still quite high considering I’m 38 & have a 3 year old(!) but the good thing is that my cancer was highly hormone receptive (ER 7.9 & PR 6.8 ) so I’m happy to try Zoladex & Tamoxifen & hope for the best in the meantime. Oh, & some other thing that i’ll be fed by drip every 6 months to protect me from osteoporosis!
My Onc said that although the graphs show that this score could be reduced to 6%, it was unclear in the trial’s findings whether this reduction was because of Tamoxifen or Chemo.
He seemed very confident that chemo wouldn’t benefit me & showed me other facts & figures to back up his theory so I’ve opted out of chemo.
Rightly or wrongly, I’m a firm believer that ‘if you’re gonna get it, you’ll get it anyway’ so although i’ll be starting my new healthy lifestyle soon (just not today!), I think I’m just gonna try to get on with my life & be vigilant in self examination (which is how I found my lump anyway) & not let it overtake my life by thinking about it all the time. (You may need to remind me that i said this somewhere down the line!).
I know it’s not ‘over’, i’ll be hankering after the ‘5 years all clear’ meeting but I think that’s the best way - for me anyway - to deal with it.
Oh well, I’ve been blogging about my experiences so i guess the blog will be a little bit boring & redundant from now on!
I’m hoping my GP gives me another 2 weeks off work so that i can ‘get my head together’ & learn to live with my silicone prothesis which keeps appearing unannounced from out of my clothes!!!
I’m having a scan soon on my left leg, lower back & pelvis cos i’ve been suffering with back pain for ages now & i have severe sciatica every month before my period is due; my chiropracter thinks it’s hormone related so my Onc has offered the scan - probably just to reassure me that i haven’t got cancer of the hip or something!!
I feel like i’m having an M.O.T!!
But that’s fine by me!
Anyways, thank you so much for replying to my original post & thanks for thinking of me in general!
I’m actually feeling a little bit gutted that I won’t be having a ‘Natasha or Victoria’ wig - that was the only bit of chemo that i was looking forward to! Which is a little bit weird actually…
I’m so happy for you!!! 20 is a great score - as close to the low end as I was to the high end - so not really in the grey zone at all. I think you and your docs have made the right choice - in all the oncotype paperwork I have it looks like there is no real benefit to having chemo. I was also very ER receptive (8.4) but the PR score was sort of low (5.4). I have absolutely no idea what that means. I’ve never heard of Zoladex - or having it by drip. Can you tell me a bit about that. After chemo, and after radiation, I’ll be on Tamoxifen for 5 years too.
Good luck with your MOT and as ChoccieMuffin says, go to Top Shop and buy yourself a fun little wig! The best part of having it will be not needing it.
Following your example - I’m going to a party tonight and I gonna have me a little drink! So there cancer!!!
Just a quick post cos I’m on my way out, I’ve written a bit about Zoladex on my blog, dunno if u wanna have a little look but if not, I will definitely PM you tomorrow anyway with some more details.