Was anyone NOT offered the Oncotype test - as recommendation was for no chemo?
Further to my previous post, I am starting to panic as I am learning more and I see many, many women offered the oncotype test to see if chemo or not. I was never offered this (& I didn't know about it). My oncologist advised no chemo due to my 'apparent' low risk of recurrence. Lobular, 8mm, grade 2, stage 1, no lymph nodes. But I'm in a bit of a panic this morning hoping my oncologist was right...as I have no oncotype test to back it....but it's too late now....my lumpectomy was October last year....
Oncotype test for lobular cancer
I’ve recently had a double mastectomy after being diagnosed with a lobular cancer. I’ve had appointments with both the radiation and medical oncologists and now need to make decisions about the next stages of treatment. I didn’t think chemotherapy was on the cards because I have hormone positive lobular cancer but my oncologist has presented the oncotype test as an option to see whether chemotherapy would be beneficial. I’m wondering if there are others who have hormone positive lobular cancer who have had the oncotype test? It’s an expensive exercise.
Oncotype
I was diagnosed with stage 2 in December and decided to have to Oncotype test to determine whether chemo would be of benefit. I'm 44, have 2 young girls and I just didn't want chemo unless there was going to be a benefit. We used my car money so am stuck with my old banger for a while but my score came back in at 20 so the benefit of chemo over tamoxifen alone is < 1%. I am so relieved and overwhelmed - but in a good way! I also feel really shitty this test costs 5k and there are lots of women having to go through chemo when 5k might tell them they don't need it. I'm thinking of writing to my local MP John Alexander for what it's worth but for now while I wait for radiotherapy and tamoxifen I'm taking this great news and feeling very happy :)Oncotype DX
Hi. I was diagnosed with an unusual mucinous BC late October 2019. Two surgeries, the second re-excision and SLNB early November. It's now December. Initially told it's Stage 2A (T2 N0 M0) but now my case will be reviewed because the oncologist thinks the tumour in the axilla might actually be a lymph node and not breast tissue. Still no clear treatment plan. Haven't slept properly for weeks. I've just paid $5000 for the Oncotype DX Breast Test. Hope it's worth it. Another two weeks wait for that and for the MDT to meet again.
Oncotype Dx test
Hello everybody, I'm new to this webpage. Sadly 3 weeks ago diagnosed with BC, I'm 47. I decided for full mastectomy and my results were good for to be able to do Oncotype DX test. I'm having first app. with oncologist this Thursday, will go ahead with the test and hope all goes well. I'm having couple questions, if somebody will be so kind to help me. How long it takes get results back? If good results and I don't have to have chemo, is there anybody who had this test done many years ago and still cancer free? I'm just so scared if I don't have chemo that cancer will come back..... I'm bit mess atm. especially every time I look on my kids or start to think about the future. hank you very much
Early stage breast cancer #4 (recurrence #3)
Hi everyone, reaching out to find anyone in a similar boat which I call the SS "Lucky/Unlucky". I have been dealing with early stage BC for 18 years now since an initial DCIS dx in 2001 (1mm in size - picked up on my first ever mammogram at age 37) - had all the recommended treatment (lumpectomy x 2 for clear margins and then rads). Since then I have 3 more re-occurrences - 2004 (1.5 mm, low grade, mastectomy no reconstruction), 2011 (in chest wall scar - lumpectomy and then 6 years of Armidex) and now late 2018 a 2nd chest wall recurrence. Tumour is ER positive, PR negative, HER negative, grade 2, Ki-67 25-30% (high - although my new Oncologist suggests that Ki-67 is 'the least reliable' prognostic indicator. UNLUCKY!!! Have never had any lymph node involvement or mets. LUCKY!! Have had chest wall reconstruction surgery 3 weeks ago using a flap from my thigh - went very well with clear margins etc. Differing opinions from the experts now about next steps. Advised I should consider radiation (second time around as I had it in 2001 for DCIS), although have been warned about potential heart issues and chronic skin and bone problems. Have been told chemo is also something I should consider. I asked about the Oncotype DX test and was initially told it was not suitable for someone like myself for prognosis or treatment planning, but when I said I was planning to get it done anyway, it was suggested it COULD be used to work out if I would benefit from chemo or not. Signed up for the test yesterday. Best $5K I have ever spent - either way. But I am very aware that not everyone can afford this and think it is a great shame that Australia is one of the few developed nations that does not support the cost of this via government medical programs (Medicare) or private heath insurance. Will get the results week after next. I clearly have something odd (lucky/unlucky) going on with my tumour type, and if I have to have chemo even though there is no node or lymphatic invasion so be it. I have never posted before because I don't want to frighten anyone with my sad story about recurrences - but equally, I figure now I am in some way a good story of how early detection, ongoing monitoring etc. has kept me going until now and hopefully for many more years to come. I am back on Arimidex and my new Oncologist has indicated that I may need to stay on this forever - no worries!! Have pretty much decided not to do radiation a second time as it seems quite dicey in terms of risks and rewards. Anyone have any experience they want to share. Love and best wishes to all on this forum. Cheers MvB
