how do you make the decision as to whether or not you have chemotherapy.

[fallenangel64]

Hi carolec how you doing sweetheart?I cant find the thread probably chemo brain haha xx

[carolec]

Hi fallenangel hope you're ok after your first chemo on the 7th.  I've joined the Anyone starting chemo in August 2015 thread if you fancy joining us - I did send you a pm but not sure if I needed to add you as a friend for you to receive it xxx

[familytree]

God Jo that's awful, Bless them both x x 

You are right regards trying to stay positive.. just can't help the mind running away with itself at times. 

I think I will get tested for bone, lung, liver and brain when i'm over the rads then I can relax hopefully. If they don't want to do it I will see how much it costs to go private. It may sound extreme but I know me... every little pain and I will be worrying. i love your attitude despite your personal losses.. good on you xxx

[Jobey68]

Hi Familytree, my ER result means it was 100% positive, its odd how different hospitals word things isnt it.
I dont have much idea of the type of BC my mum had, she died over 12 yrs ago but didnt get any help until it was very advanced and has spread to her nodes,she had v aggressive treatment but did take Tamoxifen i remember that much,she lived for 5 yrs before secondary cancer in her lungs took her,awful time 😕
I buried one of my dear friends 2 weeks before i was diagnosed in Feb , she had BC but then sadly had another primary in her womb , very sad both incredibly courageous ladies, makes me realise all the more now how fortunate i have been with my diagnosis and do try not to dwell on it too much Xx

[familytree]

Thanks Jo x 

whats the 8/8 you mention mean? result informationm seems varied for different people. I am going to ask for a  copy of my lab reports. I am like you and probably lots of others in having known woman with BC who got the all clear only to have it come back further down the line and sadly die so I'm scared to trust the findings. I know I can't be on my own with this and wonder how people deal with it. x

[carolec]

Fallenangel your post has been edited by the moderator so I will private message you when I get from Italy xxx

[Jobey68]

Hi Familytree, i know what you mean its so confusing!
My results were Grade 1 invasive ER+ 8/8 HER2.negative, ive no idea what my PR results were as no mention of them! Its your HER2 status that would have determinded Chemo as a positive result would have meant you needed Herceptin injections which they only give after Chemo, also had you been Triple Negative they always do chemo and rads as you cant take anything after like we can with Tamoxifen due to us being ER+, i had no clue about it to start with and after losing my mum and a close friend to cancer i was panic stricken initially but the more knowledge you gain the less frightening it becomes, i hope this all makes some sense!! Take care love Jo Xxx

[fallenangel64]

Ohhhh enjoy your holiday carol.i start my chrmo on 7th .decided ti go ahead with it. Do you have facebook? If you do plz add me name edited by moderator xxx we can share the journey xxx best of luck sweetheart xx

[amberstone]

Hi Carolec  Mmmmm Georgie boy sounds good to me  The Wedding venues sound so romantic wishing everything goes well for all and especially you. have a good weekend the Sun is shinning here in Cheshire as it rained all yesterday.

[amberstone]

Hi Sheena   You really are a gem sounds like you could brighten anyones day up.  You make me laugh out loud, I dont know about Brad Pitt maybe a good few years ago, now its just a dream, my surprise package is more likely to be Rodney off Emmerdale (ugggh!)  I am a very young 68

I have been up since 5.30am my husband gone to work he got up in night and slept on sofa, said spare room bed not the same as "our" bed, told that Company we had NO bed but we do have spare room- naughty me!  now got to tidy bedding away from downstairs looks like  we've had sleepover guests with bedding everywhere

Hope all goes well for you. Have a good weekend.

I should get my letter Monday from Onc to give me a date for first rads appoint for planning, not looking forward to "tatoo" bit.  To me though Rads will be ok compared to how I felt when I thought I was having Chemo. 

[carolec]

Thanks Sheena wedding is in Prscara but in Rome first - good luck on the 6th will be thinking of you - I'm also due rads after chemo - hope you get your car back soon and amberstone hope they sort out your bed - give them hell - I'd prefer George clooney myself but not sure OH would be too pleased xxx

[missmore]

Hey Maggie, I wonder what the compensation will be, brad pitt to test drive the new bed with you lol xxx

[familytree]

Thanks Kim

Great news! x

I thought I understood my initial diagnosis but the more I read and hear the more I'm confused! my results were grade 2 invasive ductal carcinoma. ER 99% PR 25% ( That adds up to more than 100% or am I being thick!? ) don't answer that! 🙂 FISH was negative. HER 2 neg (I think!) well they said one of these results determined if I would need chemo then called with results saying it was good news and I didn't. I guess like all of us I want to make sure I am getting the best treatment and that means reading up on everything but not sure I am understanding what I am reading! . Eveyone sounds so well informed I feel thick! lol

Thanks for replying x

[Jobey68]

Hi family tree, I was diagnosed with Grade 1 BC in March and finished rads in June, I've got no follow up until annual check up and mammogram due to having a low grade cancer with no node involvement, Those with more aggressive and node positive BC will be seen more frequent so I see it as a good thing to be left in peace for a year! Woohoo I say 😁😁

[amberstone]

Hey sheena I am losing it!!!   the bed came and has no nuts/bolts/screws  2 legs missing and a damaged part of the steel frame  thats it now night night. Maggie

[amberstone]

Sheena forgot to say I will be without a bed for about 9 days now, they said they will order parts and offer some kind of compensation--- we will see I was too annoyed to answer , will phone them tommorrow  Maggie

[amberstone]

Hi Sheena    you make me laugh, these men dont know who they are messing with God didnt give us these hormones for nothing.  This is what this forum is sometimes for, take our mind off things, have a rant or a giggle.

There is nothing worse than not having your wheels especially if family rely on you to have that little light lit on top  "Mum's Taxi". Is your son starting work on the Saturday? if so I do hope you get it done in time.

RELAX, take another pill or like me eat another piece of choccy. take care Maggiexx 

[missmore]

Carol, I hope you enjoy your holiday in Italy, what a beautiful country, where is the wedding? Lakes? Your chemo day is my rads day, will be thinking about you and wish you all the strength possible to get through it xxx

[missmore]

Hi maggie! Won't want to mess with you lady!
I am not happy either, my clutch was slipping when driving through town so pulled into kwikfit, who's name shall forever be SLOWFIT for me, oh leave it with them Thursday and when I called today to see if I could pick up sometime Saturday they can't guarantee that the job will be done! I am raging, my son starting work at 8am ahhhhhh anyway breathing deeply x

[carolec]

Hi Fallenangel they agreed to let me start chemo after my holiday in Italy - my niece is getting married - so d day for chemo is 6 August - feel tempted to miss the plane back - good luck with your decision xxx

[amberstone]

Hi Sheena      steam coming out of my ears   The bed arrived 11am   Husband started to unpack and guess what not one nut,bolt,screw with it plus 2 under bed supporting legs missing, and one steel side piece of bed has been so badly "dropped" and bent you would not be able to get the screw/fitting in!!!   so not happy, have phoned, if I dont get fittings TONIGHT (told them I had no bed at all) and damaged part replaced I will ask for refund and they can come and collect.   Phew! that felt good to let that out!   I was on such a high yesterday, anyway whats your day been like? hope you are ok, any plans/treats for weekend.  xx Maggie

[missmore]

Ahhh he sounds like a diamond x sleep tight xxxx

[amberstone]

Hi Sheena   thanks for reply   I have greedily started on 2nd bloc choccy after my Ice Cream I will come to my senses by weekend, and put on the rabbit onesey!!   My Husband says we could look for a holiday after rads?? so will need to lose the choccy 

Just sorting bedroom out, should have had bed delivered today!  I saw it, wanted it my husband said  I deserve it, we have divan no problems--- this is gorgeous Vintage as we have just decorated etc. He moved divan out not needed and guess what TNT not delivered, but they did come on Tuesday and Wednesday when asked not to as I was at Hospital!  Not getting it until tommorrow - so have to sleep in other room tonight. ok night night to all, have to come off computer as it is spare bedroom and my other half bed 9.30 he is out to work 5am.   Maggie

[missmore]

Glad you are getting the hang of it ft! Xx

[missmore]

Hi Maggie you sound really happy! Delighted for you, I said no thanks to chemo, may "live" to regret it, but I may live long and prosper!
It's in the lap of the gods lol
Enjoy the choc
Sheena
x

[familytree]

Thanks ladies... I'm getting the hang of it 🙂 great you don't need chemo. I wouldn't have even known to question it if I was told I had to have it.. it's an eye opener in here... knowledge is power! 🙂 

Have a great day and look forward to chatting to you all,

Always love x

[amberstone]

Hello Sheena  I feel like I have won the lottery at the moment. I was hour and half with her and she went through it bit by bit and I didnt have to use my questions (I had spent ages compiling- so they didnt sound stupid):smileylol: If she had said she wouldnt give me Chemo cause of heart then I would have been worried, but the % for and against Chemo were so small she didnt want me to have it but my heart did come into it on the infection side, so yes suppose she did answer it for me.  I could have still said I will take a chance but not worth it?

Rads: she said I will get letter Monday to go for first initial assessment? and then they will either send or tell me when I am starting, probaby the following Monday? so looks like could be around 10th August. I am having 15 also.  Hey you will be a good template for me, I will track you like a radar

I suppose my good mood from yesterday will fade a little when on Rads. 

I told my husband I really fancied a huge block of wholenut chocolate, eat choc now and then, he disappeared quietly and came back with two blocks 9.30pm how nice was that,  

Because I jump in here there and everywhere by accident on this site, as I am not very good, can I ask have you had Chemo or just having Rads?

[missmore]

Maggie
brilliant news, no chemo! What a great oncologist you have, wish mine had made the decision for me!
what date are you starting rads, I am 6th August x 15
sheena xx

[missmore]

Hi family tree
if you can find your way round there's a thread in the surgery section called surgery/results over next steps with treatment. I am starting radiotherapy, rads, on 6th August and some other ladies that are around same stage. As Maggie said we all have different types of cancer but the most important thing is that we support and understand how it leaves our lives so very different than they were before, we do have a laugh as well, it's not all doom and gloom. When you are in a thread there's a tab thats got thread options, click on it and you can subscribe to the thread and get notified when new stuff goes on xx
sheena

[amberstone]

Hi Familytree   I am fairly new to this site also having been diagnosed June 10th.  It is difficult if you are not really ok with computers but you will learn from the other ladies = if you dont understand their jargon just ask them and they will reply to you.  but remember all us ladies are basically on the same path as we say but every ones cancer/prognosis can vary in small ways so dont presume what someone else has or is going through is going to happen to you.  If you seriously want questions answered about yourself ask the Breast Care Nurse who will know your case.  What I must say though is that all the ladies I have chatted with have been really helpful with advice and tips so that you are a little more prepared.  

You may have already had a reply:  You need to register to the forum first.   Then log in with your Username and then your Password. This brings you to the site. In the top right hand corner you will see your Username click on this and it will bring you to your own page were you can click on "Read latest threads/replies" you will find your replies here. You can also get a private message from one of the ladies this will show as an envelope in the top right hand corner - click on this and follow -  Good luck

Keep in touch let me know how you get on with Rads.  I am Triple Negative Invasive Ductal Cancer and was having Chemo and Rads but saw Oncologist at Macclesfield Hosp yesterday and because the % benefit of having Chemo or not having it is so small she doesnt want to put me through Chemo - I am so glad in a way I dreaded it, so am just having Rads my first appointment will be about 10 days.  Have you had your first appointment apparently they have to measure and do things before your actual treatment starts?  I am having 15 sessions.  If your just in front of me it would be nice to know how you are feeling?

When you say 12months waiting for a surgeon do you mean the check ups they do from now on to keep a close eye on you-  I will get checked for mammogram every 12 months but thats not with the surgeon??  It seems a long time to wait and I suppose we will wonder "has it come back" but ladies tell me you have to put this out of your head and get on with life. 

have a good day Maggie xx

[familytree]

Hi 

Just joined the site today so trying to navigate around it! I can't see where it tells me if I have had any replies to any posts? 

You all sound so clued up, I don't understand half the terminology/abbreviations etc.. trying my best to read up on stuff and educate myself. I think I need a degree in breast cancer! 🙂 

From diagnosis in April I was told my op was succesful and no chemo required, just rads and Letrozole for 5 or more years (10 seems to be the new recommendation) .. big relief! but then the more I read the more I wonder if I should be confident with this decision.Though after reading this thread and the percentages gained from chemo it hardly seems worth the bother?

Is it normal to get an appointment for a years time to see your surgeon? I thought it may be a lot more regular than that in the first instance.

I had all initial treatment at Wigan and was then sent to Preston for the radiation prep and treatment (which starts this Friday) I wish it would have all taken place at the same hospital. All starting to feel like a conveyer belt! 

I'm rambling! lol

Sending love to all  x

[fallenangel64]

Plus I need a hickman line if I have the chemo cause my veins hide lol . another scar sheesh xx

[missmore]

Oh gosh it's so difficult, I tried to make sure I had all the information I could, I spoke to close family and a couple of friends and visited my gp. They couldn't tell me what choice to make but I talked myself into my decision and have to live with it. In the end I just couldn't face chemotherapy
but I know that you will make the best choice for you and you alone xx

[fallenangel64]

Hi sheena.i have until August 4th.% wise is in 10 years 91% without. 97with xx

[missmore]

Hi fallenangel
when do you have to decide by? Have you been given %? I know we had different types but if I can help you in any way xxxxx
sheena x

[missmore]

I think I will! X

[Sar41]

Hi, there was a lady on ours who had melanoma treated with just surgery so get booked on. Can't beat a good pamper! xx

[missmore]

Hi sar
well done you! Hopefully you enjoyed the curry and got lots of goodies at at the course, lot's of folk rave about it, not sure if it's only for chemo ladies or if the likes of me are allowed
sending hugs xx
sheena

[fallenangel64]

This is just the position im in now. Did you fo the chemo carolec?

[Sar41]

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

[missmore]

Thanks sar x how are you doing? X

[missmore]

Thanks ash, I hope that it is the best way forward for me, the emotional come down is quite overwhelming I thought I was a tough cookie but since I said no I haven't really stopped crying, but I think it is just relief
sheena x

[missmore]

Hi ces! All best wishes for your results today, will be thinking about you x
let us know how you got on
love and hugs
sheena xxx

[missmore]

Hi amber

sorry to hear you're in this position,  you'll see from my start to thread I have had to make this decision

although I diagnosis is different than yours all I can suggest is that you read all you can,  have a chat with your gp if you get on well

I also visited the Maggie's centre here in Inverness and chatted to a lovely worker there

I will add you as a friend here and if you do the same I can try to give you more about how things have effected me emotionally,  I am still very upset, but would like to support you if I can

sheena xxx

[Ash66]

Hi sheena

I'm so glad you made your decision and are happy with it.

All the best xx

[Ash66]

Hi Amberstone

Sorry you've found yourself in this situation. Sounds like you are triple negative. As there are no hormone treatments which would benefit you and triple negative responds really well to chemo, that's why they'll have recommended it. As you say it's your decision and the risks might outweigh the beneifts in your case. It's a rotten decision to have to make but unfortunately only you can make it. I took chemo because I was HER2+ and couldn't get Herceptin without it. Also I was 48. If it helps, my mum was 70 and refused both chemo and radiotherapy. She was ER+ though and took one of the hormone drugs.
Wishing you all the best xx

[amberstone]

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"  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.

[Sar41]

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

[hopefulholly]

Sending you virtual hugs Sheena x

[missmore]

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