Hi All
Hope all went well at clinic today Freddie( knowing that clinic not even sure if you’ll be home yet!)
Susanne how right you were. I’m feeling really miffed. Chemo unit at prh shuts on fri due to staff shortages. It means that I have to go to rsh for remaining 3 doses. To add to that they had no appts next weds so have had to move my appt to Friday which means my remaining 2 will also have to be fridays. It does not fit in well with getting away to the caravan. At least they got the needle in 1st time today, but I went very light headed after the cyclophosphamide which was not pleasant. I had driven myself and was still a bit shaky going home. My sister will take me next week but it’s a much longer journey now.
Pauline, will be thinking of you tomorrow.
Julie as I’m sure you’ve been told it’s this waiting time that’s the worst. Once you get going at least you know what you’re facing and it feels a lot better. I’m nearing the end of my chemo(4 epi and 4 CMF) and I’m now starting to worry about rads - don’t know how many yet. Although it seems like forever at the moment it’s suprising how quickly it all goes.
Take care all,
Nicky x
Hi all
Hope everyone is ok- sorry to hear about the changes to your treatment plan Nicky.
Well,I now know my next step- I think. I’ve had some major decisions to make.
They did not get clear margins so a mastectomy is needed for me. So I had to decide whether I wanted a mastectomy then later reconstruction or mastectomy with immediate reconstruction. On top of that I also need to consider the possible genetic link and anxiety issues I have with regards to my ‘good’ boob.I could have a double mastectomy and then reconstruction later (can’t have everything in one go!).
So I have decided to have a masectomy with immediate reconstruction in DCIS boob. I am then going to wait to see if I have the genetic link. If so I will definitely have mastectomy on other side too- I might even choose to anyway.
Must admit that it feels weird having to have such drastic surgery when the cancer isn’t even invasive but I suppose it’s the way it goes.
Love Freddie xxxxxxxxxxx
Oh Freddie, (((hugs))))) - sorry they didn’t get those elusive clear margins - total sh*t.
I’m sure your head must be in a whirl, although you seem to have been very analytical throughout the process, sort of planning next stage, if results go one way or the other?
Look after yourself, take the time you need to make decisions, with the genetic stuff it is obviously more complicated for you.
You are a very strong lady, you have already given a lot of support to others on here, despite the ups and downs of your own journey. Positive things to focus on - it’s DCIS, you’ve got it still in the ducts.
Freddie, just want to say how much I’m thinking about you - take care
Lizzie XX
Freddie - so sorry your news means more surgery but like Lizzy says its in situ and that will mean a good outcome just a lot of crap for you, take care, mary xxxx and ((((hugs))))
Freddie, been out and just came on to see your news, I’m absolutely gutted for you, so sorry to hear that you have to have more surgery. It’s a big decision you have had.
Take care and look after yoursef, its a lot to come to terms with, but as the others have said look at the positive.
Sending you love and hugs Debs xxxxxxxxx
Oh Freddie, what a crock! After all the waiting and messing about, too. Sending big gentle cyber-hugs!
Oh Freddie, I am so, so sorry to read your news. What a bombshell it must have been for you, and then to have to try and make such big decisions on top of that enormous shock…
The decision you seem to have come to is the one I would have made too, I think, in your situation. I hope you have a bit of time before your op to get your head around things.
Could you try and focus on some small positive things re your recovery like some lovely treats you could give yourself or a new hobby you could take up that perhaps you don’t normally have time for, just to try and find something else to focus on…?
Keep in touch Freddie. We’ll all get through this together.
Thinking of you,
Alison
XXX
Freddie, I’m realy sorry to read your news. Stay strong xxx
hi freddie
sorry you now have this big disition to make, you have given so many other sound advice and we all wish you well
love to all julie x
hi freddie, sorry to hear you still need more surgery. I had MX 3 weeks ago, i am fine, healing lovely. Been to marks and spoilt myself with some pretty post surgery bras. Been wearing them over a week with a softie in place. been told today doing so weel i can have a fitting for a prostithis when i am ready. Im trying to reasure you the op was not bad at all. 1 and half hours, no outside stitches, used glue so no dresings either, out of bed within a couple of hours. Really not bad at all, just ask anything if i can help you.
Now my results…
Just got back, where do i start, cemo first. i had sentinal node biopsy 3 weeks ago so only had 4 taken out, guess what 1 in those 4 was involved so i have to decide if i want to zap them with radiotherapy or have an op to remove them. then Radiotherapy to my MX side, then sort overies out for hormone treatment, then tamoxafen, cat scan, her 2 results to follow and to finish off, reconstruction…
Thats my next year sorted then, all that instead of my planned holiday to portugal, life stinks sometimes.
Surprisingly im ok, feel better now i know where im going. Probably will be back with lots of questions and worries when it has all sunk in
Julie hope wig fitting goes ok
Morning debs and mary, hope your both ok
Luv to you all and anyone ive missed Pauline xxx
Pauline - glad the waiting is over - 1 involved same as me…keep the pecker up kid!! mary x
ps freddie - you’re only in telford - if you fancy meeting up let me know!
Freddie, don’t I feel like a moaning minnie after your bomb shell.
My sister had a double Mx with implants a few months later(it was 20 years ago and reconstructions weren’t as advanced then). She is fine now. She and her daughter are going down the genetic testing route on the advice of Mr H. Will see what implications it has for me when the results come back but at this stage think would opt to keep good boob. It’s my ovaries I’m more worried about and I do want those removed, especially as I’m strongly ER and PR+ and chemo has done nothing to stop them working. Do you have any idea of when you have your next op. Will you be up to going to the shropshire meet on 31st May?
Pauline, glad to hear that you feel better now you know what will be happening. It’s always the unknown that is draining. It seems like such a long time now but it’s amazing how quickly the time goes. I can’t believe that it is now 7 months since my diagnosis. Sorry about you missing your holiday. I’ve started to book things for November once all treatment is finished and hopefully I’ll be over the worst of the adjusting to tamoxifen.
Take care everyone
Nicky x
Hi all
Thanks so much for all the messages of support . You are all wonderful.Nobody sounds like they’re moaning either- everything seems a big deal with this game doesn’t it? I know it certainly helps me to hear other experiences too, even when they’re very different.
I’m feeling a bit emotional today- to be expected I guess. I am also feeling a bit down about a few other things.
I tried to get my genetic test fast tracked after my first WLE. The genetic centre needed to have a letter from my consultant in order to fast track it but he wanted to wait to see what happened with the results first.Guess what- yesterday the consultant’s doctor asked me if I have had the genetic test done and ‘why haven’t I been fast tracked?’ So all in all they said they would do the letter now. Grrrrrr- wish they’d done that 4 weeks ago!
Secondly I have always been worried about some enlarged lymph nodes under my arm that the ultrasound found( I can’t feel them). Previously I was told not to worry about them. But,guess what, I mentioned them again yesterday and the doctor looked back at the results from the ultrasound and appeared worried. So after speaking to the consultant she has now instructed them to be removed and tested when I have the mastectomy.
I know only 1 - 2 % of DCIS cases have lymph node involvement but the way my luck’s going it will probably be me.
Blimey-I so wish I’d been stroppier before and insisted on all this weeks ago!
Would be good to meet up - I should be able to make 31 st May.
Sorry to be a bit ‘woe is me’ today.
Love Freddie xxxxxxxxxxx
listen freddie - you’re entitled to have your off day…this all takes it out of you…mary x
They really have messed around with you, haven’t they? We all have to trust that they really DO know what they’re doing - and yes, really, I’m sure they do. It’s just that sometimes organisation isn’t their strong suit. I had that with my post-op check and referral to Dr.A - the appointment was 4 weeks from the op instead of the two I’d been told, and I was told my stitches didn’t need to be taken out. But they did, and Mandy (BNC) told me my results. Then when I went in the next week, Mr.U just popped in and looked at my scar, and just casually asked if I’d seen Dr.A yet! Then he realised the referral hadn’t been done, so he sat and wrote it, and the paper got separated from my file. I’m sure if I hadn’t rung Dr.A’s lovely secretary I’d still be sitting here twiddling my thumbs!
Freddie, don’t apologise! thats what we are all here for to listen and try to support through bad and good times! I’m not surprised you are feeling a bit down, you have alot to deal with at the moment.
Pauline glad you are happier now you feel sorted! I just want to get on with it now!
Everyone else hope you are all well, take care!
love Debs xxxxxx
Hi all
Thanks again for the comments. It seems nothing really seems to be straightforward. Susanne, you’ve made me realise how easy it is to be a bit messed about.
Well, I’ve managed to get a genetic test appointment but it’s not until the middle of July and then I have to wait for the results so that will be a long process. Had a good chat with them though and he actually asked if I had a medical background as I seemed to know so much about it all!
Maybe that’s half of my problem. I’ve done so much research!
Pauline- I meant to say earlier that I’m sorry to hear that you’ve got such a long haul ahead of you too. Blimey- thank goodness we’re all here to support each other,
Thanks again guys,
Love Freddie xxxxxxxxxxxxxxxx
Freddie, hang on in there, you are doing so well. Glad you’ve got the genetic test appt, I know it seems forever, but July will be here before we know it. Look how madly fast (and draggingly slow at times, whilst waiting for stuff)this year has gone for us all. BC puts a whole new dimension to time - Doctor Who has got nothing on us! Fully agree with the research, that is very much my way as well - just don’t go too far ahead of yourself - like we keep saying - it’s DCIS, big positive. ((((Hugs))))))
Pauline, loads to take in, step at a time, we’re with you XXX Like you say, once you are on that planned route, you can work through it.
Take care all,
Lizzie XX
hi
everyone
well went to wig clinic yesterday, and have to say by the ones in the book they looked good, swhe is trying to order me 6 to try so hopefully i will be pleased with 1, she had a lot of time for me and showed me many different colour combinations, i then went to the hat and scaft place, the lady there was also very helpful, showing me different ways to dress up the anna hats and to accessorize(sorry cannot spell), made me feel abit better,until i got home and my first chemo app was waiting for me, and all the axietys came flooding back,
i now i have to get on with it, so am trying to perk myself up,any ideas,
i also have a infection under my arm which i need to shift before chemo,(antibiotics have gave me the sqites great)
got to take my 9 year old for blood test today, he is being soooooooooo brave.
pauline give yourself time to digest everything they told you
love to all xxx
Freddie, sorry I missed your news a few days ago. So sorry you have to have an mx. Make sure you look into all the possibilities for recon before you decide. They all have implications and when I was told I might have to have an mx, I spent days agonising over what I would do. It’s a really tough decision.
Thinking of you.
Sal x