Good Luck with your treatment - it sounds the right thing to do, having chemo to shrink the tumour before surgery, that way you may well keep your breast if not your hair - think how exciting it could be choosing your new image - all those people you can pretend to be.
I’m still waiting for the pathology results on the areas removed by my surgeon, so still don’t know if its hormone receptive or not, and the appointment for radiotherapy appears to have been ‘lost’ somewhere in the system - I rang his secretary yesterday and she’s supposed to be ‘onto it’! Meanwhile I’ll just keep taking the tablets (and praying!)
Good luck with the chemo - and enjoy Joseph!
For me, the beauty of chemo first is knowing for sure if it has attacked the cancer. I will have a mastectomy either way though.
I really am so pleased that things are settling down for you - you seem to have been balancing on a knife edge!
Just had a phone call from the Leicester Royal Infirmary Oncology Dept - I’ve got a planning meeting on Thursday 1st November ! Isn’t that just a little too convenient after my phone conversation yesterday?
Ah well - at least it’s a move in the right direction
Fiona, have they been checking on your tumor to see if it is shrinking? Mine doesn’t show on the mammography and wasn’t good enough on the ultrasound for a diagnosis. I might have to go back for more MRIs as we progress. It it isn’t shrinking, they’ll put me on Taxotere halfway through. They said getting on the MRI list is very difficult, it is needed too much.
Mine did not show up properly on mammogram either but despite this they repeated it and ultrasound after 3 chemos. It is responding ‘quite well’ so they left me on AC. They plan to scan again after 6th (which aint too long away) - and then see surgeon and decide on best surgery. Obviously I did the chemo first hoping for wle but will discuss would it be better just to get mastectomy anyway - appararently the surgeon I am under will spare the breast if he can be I will not take any chances - if mastectomy it is then mast it will be. I have never had an MRI!!
Happy Hallowe’en !
Surprise, surprise - today I received the letter from the hospital telling me about my appointment tomorrow - posted on 29th - so why did I have a conversation yesterday (30th) with a lady who said it hadn’t been posted yet? Deja vu? or something scarier…
Ooooo, what time are you in for? I’m in at 10AM. Hubby will be with me. I’ll probably have a Tinker Bell messenger bag with me and a book about WWII. Oh, and a sports bottle of ice water, if they let me drink it! A friend recommended it to prevent mouth ulcers.
hi Scottish H - hope your first chemo goes well tomorrow and you manage to get to the show with your family.
Sounds like you have been through the mill! Glad it’s all starting to pull together now. Hope the book is a good distraction… WWII… well that was a fight we won … so good luck with this one. Hope you managed to get help with the family and you can relax when you get back home. Sounds like you might be able to get to the theatre too - I hope so.
Did you need another MRI? and how long did you have to wait?
I 'd my biopsy last week at Albyn - they saw me within a week of phoning - wonderful place. Unfortunately I dont have medical insurance - but I had to go that route as my local surgeon (on referral from my GP) had thought my armpit lump was nothing much and wouldn’t see me til the 2nd week in December…yes I’m still working out how I’m feeling on that!
The Macmillan nurse phoned me this afternoon with the results - primary breast cancer, secondaries in lymph nodes.
Its good to hear you are happy with ARI - I’ll be heading there myself soon I hope… and if I see someone with a TInker Bell messenger bag and a WWII book I’ll say Hi!
I’m in for 11.30 - but only for a planning meeting - not treatment yet - sorry I’m not in Aberdeen - my sister in law is a riot and could have joined us - she’d have brought the hip flask of single malt, clootie dumplings, haggis and a great dollop of Scottish blether to fill the waiting time.
As it is - I’ll be thinking of you when I’m sitting down here in Leicester.
Good Luck
Maddy xxx
Hi
Yes my sister in law is a great joy to all who know her. Sorry not to have replied earlier - been quite busy with my daughter’s ‘baby shower’ - what a palaver - never had those in my day!!!
Unfortunately the meeting wasn’t what I was expecting- yet another doctor - just to answer more questions and fill out more forms . I have a 'proper ’ appointment on Tuesday morning for planning.
They still haven’t got my hormone status results - pathology on a go slow or slow growing sample I’m not sure - so I’m still taking Tamoxifen even though it may not be necessary - better safe than sorry I say.
Hope all goes well with you - I will update you on Tuesday after my next visit.
Love Maddy xxx
I don’t know how I missed your message! I’m so sorry!!
Chemo was OK. I was a bit nervous and wired, tired later on. It might have just been the nerves. It took much longer than we thought. I guess as it was a quick decision to go on the chemo, the drugs weren’t there at 10 when we were, they showed up about 11. They assured me in future they will be in the ward when I get there.
A friend got my daughter from school/nursery and kept her until about 1:30. That was a relief as we didn’t get home until about 1. I was just fine on Friday and the anti-sickness drugs did their work. I was up and down on Saturday, took it yesterday and was OK except for a bit of heart burn. Hadn’t had that since pregnancy. Today I’ve been fine.
I should be eventually getting a follow-up ultrasound and/or MRI to see if the chemo is shrinking the tumor. If not, they will switch me to Taxotere. They said the MRI is extremely overbooked, so even knowing I might need one nine weeks down the line, it might be touch and go.
In Aberdeen chemo is only done on the NHS, so I won’t be seeing Albyn until my surgery. That might be in March or April. I’m getting chemo on ward 15, at the mo on a Thursday. If you get sent over there, keep your eyes peeled. I’ll be carrying that Tinkerbelle bag for some time I think. It is great for carrying the chemo log book, notebook, anti-sickness drugs, hand cleanser and bottle of water for just in case. Oh, and a book!
I’m so surprised they gave you the results over the phone. I had to go in for mine. The only results I got over the phone were that it was oestrogen positive and, later after pestering, that my right breast was OK on the MRI.
Arrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrggghhhhhhhhhhhhhhhhhhh! I’m so sorry, Maddy. I really hope they get their act together and get on with helping you. (((((Maddy)))))
hi Scottish Hoosier,
glad the chemo went fine…bet that 60min wait was a scunner - no wonder you were wired up! I’ve heard these antisickness drugs are good so it’s excellent to hear that you found them so too. Good to hear your right breast is okay.
I must get me a wee handy bag - reminds me of the handy bag I had when I went walkabouts with a toddler/baby! What do poor men do I wonder - they can’t fit all that in their back pockets
Hope your friend is able to help with your daughter again -especially for when you feel tired and need a little shut eye.
I live on an island and so I guess thats why I had the news over the phone. If I’d been in Aberdeeen I’d have seen my surgeon form Albyn. He is also my surgeon in the NHS which is good. It was a shocker over the phone, but I called the next day to talk with another Mac nurse who is much more positive and able to explain things better. I carry a little black notebook… otherwise I forget parts of what is said…
I’d 2 MRI’s last week and have been sent home to wait for the date for an MRI scan with a core biopsy on the primary. The MRI results sound like something from an old B&W B movie… it’s on the ‘outer aspect’ and ‘further out from the (planet ) axilla’…
I can feel the armpit secondary getting bigger…but they say they have to wait for the whole picture before they do anything.
A cool head seems essential for this… that and patience…
Does it make things easier having dates and knowing what will happen next? I’m still in limbo and at times can’t quite believe the diagnosis. But guess I’d feel the same if I won the Lotto!!
Ward 15 and a tinkerbell bag… when I do hear whats happening next I’ll let you know and definatley keep my eyes peeled…by the way is this a bag you made yourself?
The waiting it horrible. I hate it. I bet we have the same surgeon/consultant. Do you have the prof?
It is easier now that I’m having treatment. When I thought I was having surgery first (because they told me that was what we were doing), I thought “in x days the cancer will be out”. I was still very worried about how big the surgery was going to be, because they’d told me anything between lumpectomy w/nodes and a double mas with immediate reconstruction. I have two little kids - up to ten days in hospital!!! But I was thinking, what must be, must be.
Then they said if surgery first it would be a masectomy, but they feel fairly confident they could shrink it with the chemo, and start in just a couple of days. Well, it was a whirlwind, but I felt better about that plan. Now I know if my body keeps bouncing back, I’ll have the chemo every three weeks and finish on Valentine’s. I know that is a big if, but we’ll do the best that we can. I know after the surgery I’ll probably have rads and definitely hormones. That is on the back burner, but people ask me the specifics about that. Folks, let’s do one step at a time!
I didn’t make the Tinkerbelle bag. I got it from the Disney Store.
I hope you don’t have to wait too much longer. Hang in there!
Hi Mary, been having a wobbly couple of days…so sorry for not replying sooner… I’ve Mr Mac, his was the tues clinic and I wanted to be seen asap…he certainly knew as soon as he saw me that it was a ‘nasty’… so I have to trust that he will move quickly. He said that night I would need surgery to remove ‘nodes and more’ sasp…so I guess thats their first thought…like mine…cut it out!!
But the primary is playing hide and seek and they wont start until they know the full picture… I’m so used to be in control of what is happening to me… like us all I guess…
Have you tried juicing veg and fruit for days when you are not feeling like eating or for an extra boost? My cousins wife in Austaralia had major cancer and major ops and she was sure it was the fresh juice of veggies and fruit that helped her fight it… we can get so much organic stuff now too. Home made chicken soup is a winner if you like it… after my dx my dietician (I had been trying to lose weight - ironic or wot!!) told me to eat plenty good quality protien - eg chicken and fish.
It’s a fight for sure…but as you say …a step at a time…
It will be hard to rest when the children are at home - hope you have good friends and neighbours. Thank goodness for curling up on the sofa with a good film - I was very ill when my daughter was 7 and the sofa became a place of great comfort for us both…she watched the screen and I snoozed I used to make up a flask of hot choc and we would sip from tiny coffee cups…
I’ve never been to Disney or the shop - but I love the style and the feelgood- ness of the old cartoon films.
Take good care of yourself Mary, let us know how it’s going, and thanks for sharing… it helps a lot
I used to make up a flask of hot choc and we would sip from tiny coffee cups…