Hello I am from UK and with the NHS we do not get the ONCO DX test as too expensive on the NHS , if done privately it would be £2000 (just wanted to point this out)
Can I ask peoples opion who had or going through cancer
Yesterday I was told the stats at hospital by the doctor of the outcome if me taking chemo or no chemo for my breast cancer
Out of 100 people if they did not take chemo but did have radiotheraphy and tamoxifen then 94% would survive the 10 year target and beyond would be s similar rate… 6% would not however.
That getting any type of cancer within the next 10 year target and beyond would be 11% and 89% would not
Taking chemo would slightly increase the chance of survival or recurrance
Because I am going on holiday next week I have 3 weeks to make my decision but I unsure which way to go… Anyway my diagnosis - Cancer was got in early stages and throughout the biopsies, ultrasound mammograms and after surgery for lumpsectomy my doctors have all said I have a good prognosis for my future
I had breast cancer in both breasts and it was my first ever mammogram at 49… I had no symptoms or lumps. After surgery my lymph nodes showed to be all clear and margins all clear as well.
The tumor in the right breat was a Stage 1 Grade 1 (13mm) invasive ductal carcinoma and the left Stage 2 Grade 2 35mm solid papillary carcinoma… Both slow growing, are HER2 Negative and ER positive and this can be sucessfully treated with hormonal theraphy. Doctor said they have no evidence that it is in blood vessels are anywhere else in my body
I was only referred for chemo because I am 49 and will be 50 this October coming. They see it as a belt and braces insurance and age is against me not the cancer itself
What does people think and how did you come to your decision when you had to decide about chemo?
Hi melykins
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Hi melykins. I am in a similar situation to yourself. I am 51 and was diagnosed after routine mammogram in July. Had WLE and SNB 20 august. Results meeting I was told they had clear margins, no node involvement, 9mm idc, grade 3. I saw oncologist on Tuesday and was told I would be having 19 days rads, tamoxifen for 5 years and letrozole for a further 5 years. Chemo was also offered although the percentages they presented using the predict tool were small. They wouldn’t advise either way whether I should have chemo. I have asked for the oncotype dx test but have been told the trial for this has been suspended (although cancer research have said it is still ongoing). I couldn’t afford to do the test privately.
After a couple of meltdowns this week due to a feeling of hopelessness as to how are you expected to make this decision without the knowledge and understanding I think you need, I have eventually based my decision on real life people who have been through or are going through this, with similar circumstances to myself. I have to go back to oncologist this tues with my decision which has to be I am taking the chemo. If the cancer comes back in the future at least I will have done everything in my power to have tried to stop it. I don’t want to be wishing in a few years time I wish I had done this. I have a vomiting phobia so this has not been an easy call but that’s another battle!!!
Good luck with whatever route you choose, not easy xxxx
Murphy just read your post and u have decided ! I had a meltdown last might and cried myself to sleep but today I took my daughter to a horse show , the sun was shining and I was with my family and friends , whilst I felt upset inside I thought ’ this is worth fighting for ’ . Keep in touch with me re your chemo my first is 26 th sept xx
Hi debtex, it was your figures that decided me. I am sure we have made the right decision. I go back on tue so will defo keep in touch as we will probably be going through this journey together.
Sounds like you had a lovely day with your family. My little boy was on the first cub camp this weekend so we’ve been childless and had a good chill out. Will let you know how tue goes xxx
I too was in a similar situation to you. I was diagnosed with grade 2 invasive lobular cancer ER+ HER- in November last year. Was told that the lump was approx 15mm and that I would require a WLE and sentinel node biopsy, to be followed by radiotherapy. However, when the lump was removed, it was 37mm, not the expected 15mm. My surgical team were still saying that I would just need radiotherapy, but my oncologist ran my data on the adjuvant tool (they use this rather than predict in Aberdeen) and he insisted on meeting me to discuss chemo. I went along with an open mind and listened to him explain why he thought chemo would benefit me. He said the ultimate decision would be mine, but if I were a member of his family, he would recommend that I went with it. I decided to go with his recommendation and underwent 6 cycles of fec75. I remained quite well during chemo (even managed to walk 26 miles on the moonwalk half way through) although it was tough going. I finished my chemo in July and have now completed my radiotherapy. I don’t regret opting for chemo one bit. I just think that I have given myself the best chance of preventing this horrible disease coming back.
Strangely enough, when I ran my figures through the predict tool used by the nhs, I would not have been a candidate for chemo.
Hope this is of some help, and I wish you all the best whichever treatment option you choose.
Hi weeannie1 and melykins my problem was that the oncologist wouldn’t comment on what she would advise a family member to do, she gave me the facts and said it was my decision and come back in a week. I tried to get her and the BCN to comment but they simply wouldn’t. I have based my decision on the oncotype dx test that debtex had as her percentages using the predict tool were exactly the same as the small percentages I was quoted, however her onco dx came back with 15% without chemo and 6% with chemo!!! I know this was personal to her but who’s to say mine wouldn’t have been the same or even more?!?!? I have also spoken to a work colleague who was advised to have chemo, same circumstances as me, and she hasn’t regretted it.
You are a couple of days behind me in your decision making process melykins, it defo is not an easy one to make. I have phoned Macmillan, my BCN twice, and trawled the internet, but late Friday I just decided I had to go for it. My BCN said to take numbers out of the equation, how would you feel a few years down the line if you didn’t have chemo and your breast cancer came back and how would you feel in a few years down the line and you did have chemo and your breast cancer came back. I got my answer!!!
When do you need to decide by? Pm me if you would like to talk more, but let us know how you get on.
Hi ladies - I had IDC stage 1 grade 2 ER and PR positive, HER2 + diagnosed in June.
I have had a lumpectomy and two lymph nodes removed. I am currently 3/4 of the way through chemo, I’m having Herceptin injections (18 over the next year), will start radiotherapy in October and then have hormone treatment. Sounds a lot of treatment but I consider myself lucky that it’s all available. My view is, why would you not give yourself the best chance of beating BC. Ok, so chemo is no fun but you get through the SE’s and at the end of the day when treatment is all finished you can sit back and say you did all you could.
Hi melykins, no one knows whether we will have a reoccurrence, but in my mind I want to make sure I do EVERYTHING in my power to help stop it coming back. Also I am a worrier and I know if I didn’t have chemo my everyday life would be spent wondering and worrying. As I was told, in my case it was a personal choice and there was no right or wrong answer, but for my “sanity” I’m going for it. Petrified though!!! Going for my pre assessment at the oncology unit tonight and hopefully start next week.
Hi melykins, I have pm you but forgot to say, defo phone Macmillan, they do a peer thing whereby they match you up with someone similar to yourself to talk things over with. You seem to be like me and like all the information you can get your hands on. Always best to make an informed decision, I think xxx
Hi debtex, just to let you know I start my chemo 24 September so we’ll be doing this together. Busy busy busy up to then with appointments!!! How are you feeling about it all now?
Hi murphy I’m starting chemo 2 days after u . Saw oncologist again yesterday he reiterated that I was bang in the middle of needing chemo but he didn’t disagree with me having it . I have got the ok from work to work at home when I am well enough until at least April so mi income shud not be too impacted . I have been at the beck and call of work family and elderly parents whose medical issues have run me ragged for the past 8 years with multiple hospital visits , social workers to deal with and 3 different care homes to deal with and calls for help in the night after falls etc . I lost my mum in December and whilst my dad has his own health issues and challenges he has been indifferent and quite callous about my breast cancer and hasn’t even enquiried how my young daughter is dealing with it or offered any help to my family . this has upset me but as a result it has helped me as I have made it clear that at this point in time I am going to put myself first and have everything that is offered to stop a re occurrence . If I don’t , everyone will expect me to snap back to how I was before the cancer like it was nothing . I will be running around after everyone again and all the time the cancer that escaped if I hadn’t had chemo could be doing its worst . That’s my way of rationalising it . Btw I have had some positive feedback on chemo from a colleague of husband going thro fect and doxtaxel . No sickness weightloss etc just tired on some days . Best of luck and keep in touch x
I had a long talk tonight with Macmillan nurse about everything and I am at peace in my mind
I will have the radiotheraphy and hormonal theraphy (for 10 years) but I have decided no chemo as the side effects (both long and short term) outweigh the very good prognosis I have been given by all doctors and nurses that have dealt with my case or via internet/phone
My role in this will to lose weight, exercise and lead a healthy lifestyle with a anti cancer diet regime and try to get a positive mind set
Thanks everone for your comments , it has been a struggle but I got to my happy place
In addition to the support you will find here, please feel free to call and talk over your concerns with one of our helpliners. They are here with practical and emotional support for you on 0808 800 6000 and lines are open weekdays 9-5 and Sat 10-2
Here’s some information about the Oncotype Dx test which has been mentioned in this thread which may be the one you are thinking of asking your oncologist about:
Hi George 51 . I am going to have chemo as I am borderline , I had the onco type xd test which gave me a higher than 9 per cent advantage with chemo . However I would still have had it as my tumour was a grade 3 . I am starting chemo next wk and my mindset is that this is going to help me even if it is unpleasant . My last chemo all being well will be 9 jan , 6 days before my birthday . I know that by having chemo I will worry less about cancer coming back and that way I will enjoy life more . Good luck with your decision x
I am currently going through TC & Herceptin. I’ve had three sessions so far with my last next Thursday.
I’ve used the cold cap and though I have shed a lot of hair, I still have a full covering with no need for wigs or scarves. I get bone pain two days following the chemo which is due to the Neulasta injection boosting my bone marrow to produce more white blood cells - so that’s my body doing what it should. I do feel rough (fluey and aches) for 3-4 days after chemo and get mouth ulcers but they clear after a week. No nail loss so far (wear dark nail varnish to protect nail beds). It has pushed me into the change (think that’s the Herceptin though) so im getting hot flushes). As I said, I am nearing the end now and I do get tired but in 3 weeks it will all be over. It does seem to whizz by once you get started.