Breast Cancer Now Forum

Hi there... haven’t been on this site for a bit but I want to reply to you. I had a ‘straightforward’ breast cancer as in estrogen and no lymph nodes or vascular involvement. If I had been NHS I would not have had this test but I was private - so did. I got a score of 30. Was a big shock as was told I wouldn’t need chemo. For post meno it’s a score from 26 down that doesn’t need it but above they recommend it. It’s a grey area. Major one. They’ve done trials up to the 26 score (TailorX) but not for the intermediate of 26 to 30. I had an arrogant awful male oncologist who I changed. My husband and I embarked on major research. I had an instinct I didn’t need chemo... it’s a dangerous treatment and not to be done unless really needed. No doctor could tell me by how much my risk would go down. I had a 19pc chance of recurrence over 9 years so 81pc of not according to my result. Got utterly bogged down by stats and tbh I nearly lost my mind!! All I wanted to know was by how much my score went down If I did chemo. If it took it down to 10 pc risk I would do the treatment. Not one doctor could even give me an idea of that figure. My new onco told us to call Genomic Health who do this test. They said - sorry we don’t have data in that score! It’s intermediate. In the end I opted to do it... then in the nick of time we discovered proper recent data trial to show that me having chemo gave a 1.2pc difference of not. A cancer research pal said it was giving a fiver to get one back. The test is about gene expression. It is useful but certainly the pathology cannot be ignored. With the new data I felt confident not doing chemo, but had been through utter hell! When I told doc finally I wasn’t doing it she said, ‘Good, but we have to recommend it ‘. Says it all. If I had to go again I wouldn’t have had test and wouldn’t be as anxious as I am now - but then lots of women are not in grey area. I spoke to many American women who’ve had the test around much longer and many who had scores of 30 or more still said no to chemo as it has to take the rest of it into consideration. . As one woman told me her colleague had a very low score of 4 - yet her breast cancer recurred. Yet this woman had a score of 35 and had not. It’s a great addition to the decision process but there is a big grey area!!! This was hard for me to write all this as it was a year ago this month all this was going on... have my first year screening scan on Monday and am terrified - nothing to do with not having the chemo as I know that my decision was right for me and I just can’t go there anymore! I am so glad I went deep into research as the oncos really did not know. I was given three different percentages by three different doctors and they wondered why I was confused.  It’s all just a shock and bloody scary really!!! But life continues and we do too. Wishing you much luck and very best wishes - and hope this convoluted tale of woe has helped!!! ... View more

Thanks Morgain Brilliant summary ... much appreciated. ... View more

It’s meant to work! Good luck it’s hard but worth it i was told. Sleep tight lovely trixielady xxx  ... View more

That really what we need. Feel safer now! 😘 ... View more

What a lovely quote! Going to keep that. The sun was so uplifting -  and a gift for February ☀️ ... View more

    His first ever walk today!   ... View more

Daisydi  its the toughest time now ... I feel like I had a reprieve in a weird way but feel worse as I was psyched for it. No ones ever ready . But from what I see the first is the worst and then you’re on the way , not the way you’d planned or wanted but there’s an end in sight. I think it must be much harder when you’ve worked in a job dealing with patients. MBJ said that. I met a woman today and we got chatting she seemed so bright and well... ended up blurting out my sorry tale and she told me she had MS. Was so incredible about it I felt quite humbled... she has two friends with BC too. One was a fitness fanatic nutritionist! It hit her hard as she was so fit. It’s bloody everywhere. We’re not alone but this will pass. I just want to hug you! 😘 You can always get a reprieve and play the bonkers card like I did! I will never be mentally ready either... or physically! Peeing red will freak me out bigtime🤦‍ ♀️ My bits and bladder are not happy at best of times 😡 Marlyn... don’t get any chillier. I hope they’ve rung you back and you all cosy and ok. You’ve had quite enough and they’d better reduce dosage for next one or we will be on our way. 👊 Tried to post photo of me and puppy on his first outing today. He was awful on the lead and just sat and wouldn’t move!  Sending big love your way. Hold on Daisydi. I do feel it with you🥰 ... View more

Mmm nice recipe Rosina. its on the stove smelling delicious. Thanks:)   please can I stay in feb group if I start in March ... as I’m attached to you all now 😥 they said def not starting on Thursday now (last day of feb) and I’d got my pup in daycare, husband off work and daughter coming back from Uni on Sunday for a week so husband can go on work trip 🙄   have a good weekend all... weather looking very springlike 💐 💐   ... View more

Yes MBJ they want another meeting in a week or so. I told them I wasn’t sure if my lobotomy would have worked by then. It was all a bit bizarre so I’m afraid I responded with a somewhat dry tone! You are obviously experienced and they do close ranks you’re right! Xxx ... View more

Yes... agreed it’s normal to cry... why wouldn’t we? I’m a puddle as they say in US! Im not sure when I will start. She actually said ‘chemo isn’t for everyone’... hinted I won’t cope with side effects but I said of course I was scared of chemo .. everyone is! Then she said ... we think you will come and run away! I said .. Yes I might just do that! I was actually laughing it was so surreal and the BC nurse was one of those nodding dogs and had a fixed nervous grin 🤣 My husband was stunned into silence ! But after first one i told her I’m sure I’d be ok...as I know from you fab girls.. but theyre clearly worried.. it’s at a BUPA place as my husband got insurance with work so I think protocols are maybe stricter like having to have a port and be totally calm and sane despite having had a BC diagnosis and enduring surgeries and treatments and tests and other shocks that we’d really rather not 😬   On another note my husband gave our 3 month pup a workout tonight up and down stairs and all sorts. He’s still panting an hour later... bit worried about the little chap... can they be over exercised ? He’s a little spaniel 🐶 ... View more

Oh nettienoo my start date been delayed today after seeing oncologist. Because I cried at portacath appointment... the ‘team’ decided I’m too mentally unstable to do chemo. Stunned!🤪 I told her he was explaining  about a tube going into a vein by my heart and telling me about thrombosis etc etc. of course I was going to bloody cry! I wasn’t on floor beating my fists or anything. Anyway it clearly upset radiographer and was reported back and now I’m mentally unfit for chemo!!! She also reminded me when I signed the chemo consent I said it was like signing up for the lethal injection .... omg that’s my kind of joke defense thing🤦‍ ♀️ I wasn’t weeping when I said it! But I’ve done it now 😳 So i told her I’d spent £1000 on two wigs so I was committed (not to an institution lol) - but they’d made up their minds.  Surreal day 🤯 Must slow down on those magic mushrooms 🍄 🍄 🍄 🍄 🤩🤩🤩🧚‍ ♀️ 🧚‍ ♀️ 🧚‍ ♀️ Daisydi sending you big hug and don’t they just do bone scan to check for density? I had to have one. Harder when you work in it though. What we girls are enduring in our worlds eh? Tequila slammers all round in a few months... if they’ve released me🥴 😂 ... View more

Thanks deano:) wow that’s quick for you, what a whirlwind for you. Assuming you not had surgery yet? Great u so positive and going for it. i guess we at different stages of treatment as I had surgery etc and pathology etc and feel so fit and well now... it’s a different reason I’d be having it for.  Wishing you very best tomorrow and cold cap def worth trying as it saved a couple of my friends’  hair so go for it. Hot drinks help I hear. And blanket. Lots of water! Xxxxxxx ... View more

Trixie you look like a teen! No need to cry darling... if that’s you on chemo it’s pretty damn good!  Marlyn ‘too sexy for my wig’ is hot to trot! Wow glam lot we are. Love the animals sooo much🥰 House envy for MBJ bigtime! I will learn to post a photo of my puppy and maybe model one of my wigs got blonde and red for incognito outings! seeing oncologist tomoz... prob to get a telling off about port appointment ... all I did was blub a bit when he listed risks in a blasè way...and he wouldn’t do it .. said if anything went wrong I could sue as not fit to sign consent. Not nice:( I think she will say don’t do chemo tomorrow but will see. My husband says don’t now and my sister says she wouldn’t and also a dear pal... I’m very confused now🤦‍ ♀️ I thought decision made but now doubt crept in.. I was told no chemo as no nodes etc stage 1, only reason is oncotype score which says 19% chance of return over 9 yrs... so 81% not. But docs cannot tell me how much the 19% will go down by if I do chemo and says it only works for 11 women out of 100 like me. All just numbers.  I’m so distressed and not sleeping again. I’m all prepped in a practical way for chemo route but since portacath debacle and how it’s going to get delayed... it’s messed with my head and docs just say it’s my decision as it’s grey area but I’m emotionally incapable of making a rational one!  Docs say do it but it’s high price to pay, BC nurse says I’m likely ‘cured’ but it’s insurance... it’s like the dilemma from hell really!! If anyone has any advice or knowledge I’d be so grateful as I’m stuck between a rock and a strange place!!!! Wish I’d never got gene test really .... so many women don’t and don’t need it🤦‍ ♀️ It’s not 100% correct either...aaagh!!!!! Xxxxxxxxxxx ... View more

Marlyn Rant away please it’s what we all are here for when we are allowed to log in!!! Feeling every bit of this for you and friends/family can be great but can say oddest things that make me want to deck them lol. Or cry. Usually the latter! I think hospital think I’m a neurotic loony... seeing onco again tomoz. I’m glad you are physically recovering but the ‘poison’ can have a very lowering effect on our system so I’m not looking g forward to that bit as I’m low as I can be. I CALLED BC CARE AND THEY ARE WORKING ON SITE TO FIX IT. Hopefully be ok by tonight. I assume others called as they knew about it...more calls the better! It’s terrible for us all at this time to not be able to get posts or reply 😬 😬 😬 Hugs to all. And if you see this nettynoo sending you love and it will be up and running soon xxxxxxxx      ... View more

Test ... View more

Yes! She went past Singleton hospital and I’d told her about you so she sent you my love as she went past and thought of MBJ!! hope all went ok and you feeling ok xxxx 💐 💐 ... View more

My daughter sent love from me  to Singleton as she walked past today!  ... View more

You logged on for now 😬 How ARE you?!!! Xxx ... View more

How are you??? You logged on... for now 😬 ... View more

Hope you had good time in Ponty with your pal and it was good therapy! Wondering how MBJ did today. My daughter walked past her hospital in Swansea and thought of her:) The site is very random and frustrating! Never know if it works or not 🙄 I’m prob not starting next week now, saying they can’t do EC without a port... that just not true! Oh well will be a bit behind you guys but will benefit from all the wisdom and handy hints🥰 Hope everyone ok 💞 ... View more