Afternoon all
just looking around for anyone who has been or is currently in my situation. I had surgery, wle, clear margins, no node involved although 3 removed as a precaution. I was initially told that rads and tamoxifen would follow, fine I thought, I can do that. But I have been told that chemotherapy is now recommended. Oncologist gave me figures ans 2% benefit from having it
Am struggling to get my head around this and wondered if anyone has any thoughts?
thanks
sheena
Hi sheena
2% benefit? Sorry but if it was me I’d say no thanks. If it was 20% then yes definitely. Chemo is not easy. I’m lucky I’ve only been left with peripheral neuropathy and gum disease. Some people have a hellish time during and after. Sorry I’m not trying to scare you.
If I hadn’t been HER2+ then I wouldn’t have taken it.
If you think that 2% is worth it then go for it but it has to be your decision. I’m not taking tamoxifen because I couldn’t deal with the side effects and there’s a 9% difference in the risk for me of taking it and not taking it. Personally I think quality of life is more important.
Think I’ve become a bit of a rebel. I’m tired of not having any control of my life and am taking some back.
I’m sure there will be others out there who will totally disagree with me but it’s our bodies and our decisions to make.
Good luck with whatever you decide.
x
Sheena is having the onctype dx test an option for you?
Hi missmore, I’m in a similar position I have had the oncotype dx test and I scored 22 which is low intermediate (low is < 18 and high risk >31. My score says only a 4% benefit and I am still undecided re chemo. Going to see another onco next week as didn’t feel confident with first onco as very confusing and not sure exactly what he was advising ? My BC nurse says due to my age (just 50) and a grade 3 ( only after results of surgery) I should have chemo for belt & braces but I’m terrified of going through the treatment and not confident the benefit outweighs the side effects and long term effects . I will have radiotherapy and Tamoxifen for 10yrs. From reading other posts it seems that different oncologists around the country seem to advise different things with the same circumstances !! Frightened to make a decision either way in case I get it wrong. So I completely understand how your feeling. I really need to make a decision next week x
Ladies, wwill call hospital tomorrow to double check if that test was done, I guess different authorities have different protocol
I think the main issues with me were age, now
53 and the size of the tumour, 27mm
great to have support, what a club to be in!
hopefully sleep will find us all tonight
Hugs
sheena xxx
Hi Sheena
We had to make this decision. I had 2 tumours, grade 1 and 2 with low Oncotype scores but one was pretty large so it was felt chemo may be of benefit.
Part of my thinking was its much better to choose chemo rather than have to have it and we’ve got two young children so I wanted to do everything to reduce the chances of a recurrence.
Also yes chemo is grim but not everyone has dreadful side effects so I figured I’d give it a go and if it did get too much there’s nothing to stop me calling it a day and stopping treatment. Who knows, even if that happens whatever chemo I have had by then might be of benefit.
Massive decision, good luck xx
Sheena, I didn’t have test as Warwickshire not signed into it yet. Plus my onc thought I would come back with high benefit or grey area. My tumour was out with good margins, not it lymph nodes but a pesky grade 3. So as 34, and clearly cancer cells go bonkers with me, I wanted to kick the crap out if anything dubious lurking around. Just had round 2 yesterday and doing better than I thought. Tiredness is the biggie for me. But have cracking support and lovely medical team who are being fab. Take care whatever you decide x
Hi Missmore,
I wasn’t initially offered chemo although was told it was something that could be discussed. The oncologist said she does not recommend it unless it makes 5 or more 5% difference to 10 year survival stats. Turned out mine rather too close but I wasn’t offered chemo anyway. The oncologist just said, you really don’t want chemo, I think re inital and (on some) longer term impacts. My oncologist works for a hospital involved with breast cancer research…not sure if that has any sway…it seems onc’s views vary at different hospitals when in the low to 5% bracket.
I hope you get enough information to make the right decision for you. At the end of the day when borderline chemo I think that’s what it is all about…the pro’s and con’s of each, with no easy right answer. Different if stats are higher, in my view.
X Seabreeze
Hi Sheena, I’ve only had one cycle of EC so far, round 2 is on Tuesday. I tolerated it really well though. Had a bit of mild nausea that was sorted by anti emetics and was just tired for a week. Felt back to normal by day 6. I’m sure it will get worse as I go on but I can handle what’s been given so far so if it does we’ll deal with it then. Everyone’s experience is so different I just think you need to gather as much information as you can, but from reputable sources, and make a decision that you feel happy with. There’s no right or wrong decision only the one that’s right for you x
Evening ladies
I did check with hospital and that test is not available in Highlands and Islands. Had a good talk with bc nurse as well. I’ve made an appointment to chat to gp on Monday too
it’s reassuring to hear from you all and appreciate how different we all are, think I am nearly there, although I suddenly change my mind! Typical woman, got no partner/husband for extra support or hindrance!
ultimately we all take a chance, I just want to have the best life I can, and still have the tamoxifen to contend with for next 5 year…hmm
love to you all
sheena xxx
Hi Sheena…was just lurking as still waiting for my path results… but my friend had a 2cm grade 2 and was told chemo would make 3% benefit so declined it and did rads and tamoxifen. She said she’s ‘saving the chemo in case the bugger comes back’ and she’ll do it then! She’s 3 years out. Oh and she’s 54. x
I’m in West Midlands and they are currently ‘overwhelmed with cases’! Must be something in the water!! I had a recall on 18th May, diagnosis on 30th May, Op on 22 June and path results due 9th July! So much slower than you. The waiting is harder than the ops. Talk about keeping me in a state of constant anxiety…daily!! Oh was grade 1, 14mm er/pr+HER- on biopsy…from reading all these threads I’ve no doubt it’ll change on the 9th!!
Hi Sheena, from what I’ve been told there are different types of chemo to suit the person. Mine is er+ pr+ just under 2cm stage and grade 1 but after op it came back her2+ so chemo recommended. I was given a 4% difference with chemo herceptin etc but as grade so low I’m having the weaker chemo - 12 rounds of taxol. It’s such a tough decision and before mine came back her2+ I wondered what I’d do if I Had to make the chemo decision - especially as you are the only one who can really decide - really feeling for you - big virtual hugs xxx
Sheena have pm you as am on FEC T. and yup letters v. appropriate!! Its not easy decision, but you can get support to get through it. Take care x
Oh, think you have to follow someone to get msgs. X
Hi Sheena,
Yours does sound very similar to m ine, im just wondering why they reccomend chemo ,. with only 2 % My oncologist was very definite i didnt need it, so as yours sounds similar i cant understand why chemo needed, was your lump very agressive but then mine was, i just caught it early. luckily, Are you asking for second opinion. See if Breast cancer care can put you in touch with someone who was in similar position, they were going to me if id needed to. Junex
Ladies
just wanted to say a big huge thank you for all the advice/support you gave me. ! Ade my decision and onc gave me my script for tamoxifen and rads to follow, I said a big no thanks to the chemo
huge weight lifted from me, feeling very emotional but forward now and no looking back
sheena xx
You must feel so relieved to have made the decision and know what’s going to happen now. Fingers crossed things get moving quickly for you. Look after yourself x
Hello to everyone, can anyone help! I was diagnosed on specalist report as Grade 3 Invasive Ductal cancer, ER negative, ER2 negative he said no benefit withTamoxifen or Herceptin. I thought great only radiotherapy to deal with but he said Chemotherapy! just in case. I am terrified of having chemo. This is where I am at a loss, if it was clear in lympth nodes, and its gone from boob, why do I need Chemo? I understand rads. Am waiting for appointment to discuss Chemo/Rads seems like forever. Oncologist will have to weigh up the risks/benefits for me as I’ve had a heart bypass and 4 stents so she may not give me chemo. I am going round and round, someone will have to really convince me that I need chemo but it will be my decision I know and it is hard. The way I see it at the moment: “they dont think there is anything else in body but will give me chemo and make me poorly - just in case”:womansad: I want to say “no I dont want chemo just in case!” and hopefully there wasnt anything anywhere else but if there is a cancr later down the line I would have to deal with it then?" or am I being silly to refuse the Chemo. by the way I am 68 now.
Sorry ladies you can see how mixed up I am. You all seem to have a better understanding of all the terms etc. Maybe I will be better when I see the Specialist Oncologist at Christies/Manchester butI dont even know what I am supposed to be asking her! its all like mush in my head.
Have a good day if you can ladies what ever you are doing.
Not bad thanks Sheena. Round 2 done last week, celebratory curry tonight as feeling pretty normal again and off to Look Good Feel Better this afternoon. Having treats and things to look forward to is def the way to get through this! Hope you’re ok x