Tamoxigang cancer support thread 54: A new thread for a new year!

[WhatWouldLeslieKnopeDo]

Welcome one and all to the wonderful Tamoxigang thread! May 2016 bring us all health and happiness

If you are new here, then an extra big welcome to the club nobody wants to join. The thread is for people with any type of cancer, and also those who are waiting for results. So don't be shy. We are more than happy to hold your hand while you are waiting for a diagnosis, and we will be here to celebrate or commiserate, whatever your news

No question is too big or too small, someone will usually have an answer, or an idea of where you might find one. You can laugh, cry, shout, swear, and, of course, eat chocolate it is a bit of a safe haven from the mad world of cancer, the head-tilting and talk of bravery, and all the nonsense that comes with this diagnosis :)

So feel free to introduce yourself. And oldies, feel free to re-introduce yourself if you'd like.

We only have one rule here and that is no Googling!

Dotty, my GP referred me as a non-urgent case and said I'd be probably be seen within about 6 weeks. I got a letter in the post from the surgery about 3 days after my GP appointment with booking instructions.

When I called to make the appointment they gave me a slot within 2 weeks (even though GP said non-urgent to me) so I think the 2 week starts once the clinic receive the referral/you contact them to make an appointment. And it also seems that (in this area at least) they use the two week rule even for cases the GP isn't too worried about.

Can you chase your GP to make sure the referral hasn't been overlooked/got lost in the post? Hope you don't have too much longer to wait as it's very stressful.

My letter said the appointment can take 3-4hours, but that in most cases you get the results the same day. I don't have anyone to go with me so really hope it's good news!! I'll know tomorrow...

to all

Got a call back from gp secretary. She said the hospital had the referral and we're having to organise more clinics???? She said I should hear shortly. When I asked how long I should wait before chasing, she said to contact her on Thursday if no appointment received.
I suspect someone has overlooked me somewhere.

Good luck for tomorrow mybrain. Fingers crossed it is good news.

Thanks Dotty - hope it comes through quickly now it's being chased.

A late Merry Christmas and early Happy New Year!

Earthy - so sorry you are dealing with this over Christmas - I hope it all turns out to be nothing and you can get on with a grand 2016.

My story - if I am not too late! - diagnosed with IDC in left breast in March April 2015 - triple negative and 3 tumours in all. I had 4 EC followed by 12 Paclitaxel and 4 Carboplatins for my chemo regimen, and then double MX and immediate implant reconstruction (with ADM strattice) 6 weeks after my last chemo (all of which I had to weekly commute for from Rome to London for treatment). I also had the sentinel node biopsy with my MX but luckily that was clear. I had a complete pathological response as well, which is good. I am now about 7 weeks post surgery and went for my first run today (am a bit of an exercise nut) and it felt fine - I am now in training for the Rome marathon in 14 weeks time, so need to make up some lost ground which chemo took from me! Am also looking to shift about a stone which chemo delivered, slowly but surely.

Hoping everyone is well.

Anna, four rounds of each is for particular sorts of cancer. It wouldn't work better with other sorts, where three rounds of each gives a better result. All technical stuff and they will have made the right choice for yours.

Good luck tomorrow mybrainhurtsalot

Lovely to hear from you Boobz you sound like you are doing fabulously.

I often wonder how women with such similar diagnosis to me have such different treatment and how they decide who has what? I wonder how much oncologists are able to vary the treatment for their personal preferences and how much they have to stick to national guidelines. I asked mine why I will be having EC rather than FEC and she just said that the F increased the toxicity without much benefit. I still worry though that others are having the F and I'm 'missing out' as you just want every chance there is to beat this!

Hope it's all ok today Brains

Thank you very much for the good luck messages. It turns out I just have very lumpy breasts and ultrasound showed normal breast tissue so I'm feeling very relieved and rather guilty about wasting their time.

Thinking of everyone waiting for appointments/results and those having treatment Hope you all get good news soon too.

That is wonderful news mybrainhurts congrats

Fantastic news, my brain!

Fresta, I too was concerned about not having the F so I asked at the Christie why I was having EC and others have FEC and they told me that they don't give anyone FEC anymore as the F part was found to have little positive effect so was unnecessary. I asked the professor that I went to see for a second opinion and he said the same thing so I wouldn't worry about not having the F part.

Fab news Brain!!

Thats reassuring Anna, shows our oncologists are bang up to date then- I love mine- she is fab! Always cheers me up as she is so positive! (unlike the surgeon)

That's great news mybrain 🍷💐 xx

I'm feeling completely fed up with 'everything'! Appointment came through for MRI, but as I was away for Christmas I had to change it. Now my boss is saying she would prefer if I could arrange it for my next day off....which isn't till the end of Jan 😐

Part of me thinks it would be stupid to leave it that long, and part of me thinks that as the CT scan was clear except for the one area, that maybe a few more weeks won't hurt?! But then is that just because I'm fed up with it all 😒

I suppose my main concern is that IF the MRI doesn't confirm what that area is, then I'll still need the biopsy, and that means things dragging on till February!! Which just seems ridiculous!

Twice my replies haven't posted. Aargh!

Earthly - how are you doing? A lot of people say that waiting for the first appointment and not knowing are some of the worst parts of the whole shenigans. Hope you are doing okay. Be prepared to undergo some tests as well as seeing you consultant. I remember being at the breast clinic for ages, it was a one stop shop,for me, although every hospital is different.

Brain - really pleased to,hear the news. Discovering the news that you have lumpy breasts and nothing sinister is not wasting anyone's time, but jolly (hockey sticks) good use of NHS time and money!

Dotty - glad you are going to get a date soon. If you don't continue to chase.

Now back from hysteroscopy. Felt a little washed out beforehand due to not eating (I like my breakfast) but okay afterwards. It was actually quite nice in the ward, reading my book, chatting to,the other ladies and having sandwiches and drinks bought to me. I don't get that treatment at home (although have just totally milked not cooking this evening). After getting home, watched The Holiday, a perfect, post hospital film (despite husband snoring through it).

Hello to everyone.

Hi all.

I haven't posted as much lately but i do try and read when I can and think about everyone.
I was diagnosed in March 2014 with two lumps; one 18 mm triple neg and one 4mm Her+. Lymph nodes were clear and I had chemo first before a double mastectomy (I am BRAC 1 pos). I had a complete pathological response to the chemo. I am now waiting for a date to come through for my surgery to have my ovaries out. I had a scan before Christmas which seemed to suggest that all ok despite one of my periods being 8 weeks late. I had a much smaller left ovary which I think may have given up so I might not now have a period before my op so that will be it.

Any tips on the menopause would be great thanks?!

Nice to hear from you again Malt/Mumto.

Marshy- good news.
Lily- I hope this change of chemo works well for you.
Boobz- good luck with your training- that's a fab thing to do.
River- glad you are home and resting up.

I will reread this thread and try to catch up properly with all the news and with those who are new.

Fantastic news Brain

Boobz I am in awe. I am hoping I make it to 5K this year. I am also envious. Rome is my favourite city in the world.

Went out today to find hospital had left a message re my appointment. Of course, nobody was there when I called back . I suspect somebody messed up with my referral. Will call in the morning. At least I am not worried. I think that is why I posted on here, as if I put the worse case out there, it wouldn't be the case. That probably makes absolutely no sense to anybody but me. Excuse me, I have had a glass or three of fizz

Thanks for asking rivercam, not great to be honest. Had a few days at the inlaws which meant pretending all is fine for a couple of days which was harder than I thought. I just need to know now, one way or another.

earth

mybrainhurtsalot yippee! That is excellent news, and just in time for the New Year

Dotty that makes sense. Good luck with the hospital tomorrow, I hope they'll have an appointment very soon

earthy sorry you've had a difficult few days. It is not an easy time of year to have to try and hide worries! I hope you'll get answers soon

Speedy good luck with your surgery, I hope you get a date soon. And fingers crossed no more periods before then! :)

Waving to everyone

Evening all

I'm having trouble keeping up!

Just wanted to say hello to all, old and new.

Fab news mybrain - so pleased for you.

Dotty and earthy - I hope things move forward positively for you both very soon.

River - I didn't realise you were having another hysteroscopy. What's the next step for you?

Nanny it doesn't seem reasonable to me that you have to delay something so important to wait for a day off.

Waving at penguin and boobz.

Hello all, wishing thosw awaiting appointments a quick relief and good news and to those with procedures a swift recovery and bes outlook possible.
Due to the confirmation of there being a urinary tract infection, my chemo was postponed for a week as I take a course of antibiotics to hopefully clear uo the infection. I had hoped next week's round would be the last, but seems there has to be some drama just when I thought the end of all this was neigh. Sigh.
I have really had enough. I am lucky that my chemo had thus far gone so smoothly with average side effects, but even small, insignificant nags can have a toll on one over a period of time, from restless sleep to aching jaws.
Some semblance of a former life would be so so comforting. 2015 was a bad year for me, and though there were some good times and some happy memories, the cancer blighted it all because it tends to change your whole remaining life not just one year. Here is hoping the new year will give us all some respite and good news.

Thanks Marshy that's exactly what I was thinking but I thought maybe I was overreacting. I will call my boss today and tell her I can't change the appointment. I just want this over and done with. Hope you have a Great New Year, wishing you a Healthy and Happy 2016!

royal hope you are feeling Okay! Fingers crossed the antibiotics do their job and you get that last dose of Chemo done next week! 💐🍷 Wishing you a Healthier 2016! Xx

Aww, sorry you had your chemo delayed Royal, but at least you have an extra week for your body to get over the last dose so maybe the side effects won't be as bad as you will be stronger? Have you got something nice planned to celebrate your end of chemo day ?

Nanny, in my experience, hospitals can rarely give you a requested day anyway for appointments as they are so busy, I would stick with your allocated day if you can- sod the boss, it is too important!