Even though I how gone through every scenario whilst waiting for my results today was a bit of a shock :(. It turns out that my 1.5mm malignant area which was an area dcis with some idc is actually a 30 mm idc with 4 mm of dcis on excision and a sentinal node metastasis at 2.1 mm! Good news is clear margins all round but with some cells attached to a blood vessel (although both surgeon and onc not to concerned about). Thing is now I am just under the % where chemo would be the standard recommendation so need to discuss with onc next week. Chemo aside it would be rads anyway to include the axilla instead of axilla clearance. On the + side after the biopsy showing a weak er + it has come back as 8/8 so that’s good.
Flippin heck (polite version) what do I do I am 48, fit as a flea with 2 young children? Head is battered thinking about it.
Hi Helly. Sorry you have not had the results we all want ?
I had my results Wednesday and am in the 4-5% group where chemo would be an advantage but not a definite recommendation. I have an appointment they had already booked for me with the onc on Wednesday next week.
Like you I am 48 with a 23 year old son with severe special needs, an 18 year old daughter and a 15 year old son just going through gcses. Luckily my daughter did her A levels last year and is currently taking a gap year (thank goodness it would be horrible with her away)
I have decided that I am going to throw everything they offer me at this. My lump was a grade 3 (originally they said grade 2) having grown from 15mm to 20mm on three weeks and one out of 14 nodes was affected. For me personally I need to know I have given myself every chance. My son has a rare genetic condition with much smaller odds than mine yet it still happened and my husband do suffers from severe Crohn’s disease complication again much smaller than my odds so for me I have to give it a go. I am ER 8/8 and PR 8/8 too.
I would definitely regret not giving myself the best possible chance
Not sure if I’ve helped but I’m sure you will reach the right decision once it has all sunk in. X
Oh Helly This BC is such a mare! Mine was grade 2 1.6mm on biopsy & grade 3 2.0cm 4 weeks later. I don’t know if it’s the boob mutants growing super fast or perhaps they underestimate the size in the first place. I was gutted about the grade 3 & would say it was the worst moment (after initial diagnosis) of the whole experience, topped off by also being told I had to go back to theatre because there was some DCIS in the margin. The latter also freaked me out because I lost faith in my body … 1 tumour was bad enough, but the fact it was possibly in the process of making another was devastating. I was told definite chemo by my team because I had HER2+ also. I would ask for an oncotype DS if I was you, which predicts how likely it is to come back. Your team could then be guided by that. Chemo is not an easy thing to go through, largely because it takes SO long, but I am glad that I feel we have chucked the lot at it. If it comes back, I will know I tried everything. I don’t know if that helps at all, but maybe ask the onc/BC nurse what they would do if it was them/their wife/daughter. I have found the nurses on the helpline amazing to talk this kind of thing through with (better than my official team on one issue during chemo). I wish you all the best. I know you’re probably really upset, but that will subside in a couple of days & you’ll be back to how you were before you got the results. It’s hard, but you can do it xxxx
Thank you,the grade was grade 2 biopsy hasn’t changed but us a stage 2b following results and much bigger . I did ask about oncotype but was told it wasn’t indicatde as the benefit was more than 3 % and another fraction would have been standard treatment recommendation
HI Helly Ah, I thought you said you were grade 3, my mistake, as a grade 2 I can see why chemo was not automatically recommended for you. Look, chemo is OK & you will get through it if you decided to go for it. There are a few bad days, when you might need help with the kids, but it’s more of an endurance test of feeling a bit horrible/unwell for a long time. That said, you will have weeks during treatment when you feel absolutely normal, so there us some respite & you can do things with the kids. Why don’t you see if they would give you weekly paclitaxel? The side effects are pretty minimal for most people until the last few & you don’t have the immune system lows that you get with 3 weekly FEC or FEC-T (the initials are just abbreviations for the chemo drugs). Could be a good half way house between full blown chemo & not having anything. I played golf 3x a week on Paclitaxel & some people just take the day off & work through. The weeklies aren’t available everywhere, so you might have to push for it. Take care xx
Hi Jane,my diagnosis sounds very similar to you( grade 2 ,15mm ,nodes clear ,I was 51) and chemo was not even mentioned.Did you have large area of DCIS?
Helly I came out between 4 and 5 too xx
I don’t know which they just said metastatic disease but yes it was identified and biopsied on ultrasound at my first appointment. I remember looking at the screen and thinking how big it was. That was the moment I knew for definite although when she said the lump was solid and not a cyst I began to feel uneasy. I will ask on Wednesday. Have you got a copy of your pathology report and if so was it given automatically or did you ask?
I put my results into predict.nhs.uk today and it was a reasonable/good advantage to having chemo on both the 5 and 10 year prognosis. Just reinforced my decision really xx
Jane glad you have your appointment I also went of to the pub for with a work colleague and had a lovely time with some who can appreciate the position (her partner had a difficult head and neck cancer), doesn’t fanny around and has a blacker sense of humour than me ?. We laughed fir hours x
Thanks seren, I think I need a note book too! My bs was very good but yes I think his heart used to sink a bit lol. When discusding about recommendations for the axilla and the surgeons professional body, guidance etc I piped up yes " I read that last night" he just looked and started to smile!
BTW congratulations on your oncotype result I would have been comfortable with that x
Lynne can I ask what your npi etc was before your test?
Haha Helly I wish I could’ve come with you. My dark sense of humour has kept me going. Well I’ve lost my nickname of sugar t*t as the honey has been swapped for silver dressings. So now I’m silver t*t but no hope of promotion to gold t*t which is just not good enough!! ?
Thanks Seren for the good luck wishes.
I have to say this is a minefield isn’t it? The BS said the onc appointment was for a discussion re chemo cos I’m borderline so I get my argument ready about wanting to throw everything at it and they rattled on and on about what I would be having. Then he asked me what my biggest fear was and I said that you would say on balance it wasn’t an advantage. He looked at me and said that BS just look at the surgery side and with a node involved (that was macrometastatic) there was no question as it would definitely be an advantage. But then come the poxy wound. That has to have healed significantly first within the next 9 weeks. No pressure then lol.
Hope everybody else who had an appointment today got on well.
Love and hugs xxxx
Bottyboo, my app followed a similar theme, very nice oncologist, straight talking and which point I said great can I just say I like straight talking and he laughs and said I don’t need to do any more helly you need chemotherapy, oh ok I said! Not that borderline as thought. The benefit clearly outweighs the risk in every scenario to the point when he said people ask what I would recommend if it where my wife, partner, loved one and I would say in with your picture i would recommend Mrs Dr have chemo (she may not agree but that’s the recommendation). So I start Fec-t x 6 6th April, may not get picc in for 1st dose but for 2nd if that’s what I choose. Oh poo Kskking if now but feel better now there is a definite plan. X
Thanks everyone I will make the most of every minute! Lots of love to all, Sarah xx