Tamoxigang New Year, New Thread, *46*

[BetsyBoop]

Hands round a for everyone.

Ooh yes, Fecking Terrible it is, updating. My migraines also have a strong hormonal trigger.

pickke, that sounds like a lot of additional uncertainty to cope with. It's very debilitating not to be able to put dates in the diary and to have a shifting situation. I find it panics me to be told that they can't quite be sure when they'll be able to fit me in for treatment because they're busy.

Marshy - Sending a hug back to you, hope today is a better day.

Goodness - Glad you are being looked after and are pain free. Good Luck with getting out of bed today, hope all goes smoothly.

Betsy - I'll put down my dictionary then, I was wondering what the heck Utica was!

Foo - Try and have a sleep before your appointment, I am sure I read somewhere that you are taller when you first get up and then get shorter as the day wears on - every little helps!

Malt - Enjoy your day and don't worry about going wigless, you look beautiful. x

Harriet - Yay, the first part of your treatment is over. Waiting for results is horrible, your mind runs away with you, but we are all here to hand hold.

Really, Wren and Difficult - Good to hear that counselling is effective. How did you find your counselor? Did your GP refer you, or did you seek them out privately?

I am still a bit of a sorry mess this morning. Keep crying, doesn't help that I woke up at 3am and couldn't get back to sleep. Going to splash some cold water on my face before picking up DS from pre-school.

Hi, I'm one of the 'older' members of this group and don't really post much but do occassionally read to see how everyone is doing. tiny I had a similar thing with my neck. Something showed up on my T9 vertebra on a CT scan. The CT had been done at a different hospital as I had been admitted with a suspected clot. Anyway they immediately said 'bone mets' which sent me into sheer panic as I had previously been told 'no spread'. Onc then arranged for further MRIs to be done and previous CTs to be looked at (I was on chemo at the time). He then organised a full body MRI when my chemo was finished and the thing on my T9 was unchanged. He said he was happy enough to say it was probably a benign thing which if I hadn't of had a bc diagnosis would have been ignored. Hopefully your next scans will show no change as well which is a good thing.

Waving to everyone xx

On advice from other Mumsnetters Ive been told to add my post to your thread ladies....here goes.

I have found a small, nobbly thingy in my right breast. Dr thinks its nothing untoward but said will get it checked out and as referred me for a scan. She said they may give me a.mammogram as I'm 47 next week and this is the age they call u now not 50.

What will the scan involve? Will I be told there and then????

I just assumed that when the London consultant said I needed chemo within the next week and no later than within the next two weeks that it would actually happen. At the moment there is nothing planned for the next 2.5 weeks, which is 3 weeks from when I will have seen the consultant. I need a blood transfusion too and that is proving problematic to arrange as there is nothing available this week.

Hi Hula - I can tell you about my experience when I found a lump. I was referred to a consultant who had a look and a feel and was immediately concerned was I also had puckering of the skin in the area of the lump. I was sent immediately for an ultrasound scan, which showed there was something there (I.e it wasn't a cyst). The lady doing the ultrasound said immediately that it was likely to be cancer. I was then sent for a mammogram, and the nurse there showed me the cancer on the screen. I then had a biopsy, the results of which were used to grade the cancer. So I think you'll find that if you have an ultrasound the person doing it should be able to say straight away if its just a cyst, or something of more concern. Hope that helps.

hula I'm assuming your GP has referred you on the "two week" pathway? First I will say that 9/10 lumps are benign, and your GP obviously thinks that yours is, but is rightfully being cautious. Typically you will get a mammogram and possibly an ultrasound too. (For example they often use ultrasound to double check a cyst is really a cyst) If they see anything at all that they are not sure about they will do a biopsy. This doesn't always mean bad news, in fact I think it is still the case that a very large percentage are "negative" (as imaging get better they can distinguish what's going on better). How long it takes to get the results varies - some clinics do a "same day" service, but most (on the NHS) you have to wait a few days for the results to come back (eg I was seen on a Tues, results on the Fri.)

The waiting is the worst bit, stick around and we will hold your hand through it. :)

Hi Hula another one who was told there and then that the mammogram didn't look 'right' and so I had an ultrasound straight afterwards which confirmed it, (personally I wanted to know there and then, rather than wait and worry).

The mammogram was uncomfortable rather than painful. You stand next to the machine and they squash your breast between two metal plates to take a picture of it (difficult to describe really!) but not horrid!

Don't forget, the vast majority of lumps are fine so please try not to worry (easier said and done I know).

weebarra my BMI was 39.9! Threshold for surgery at the hospital is 40. Anaesthetist sad I was fine just a bit short. If your heavy you ave to go to another hospital which I don't like.
Glad I lost 4 kilos in the last 2 weeks, its great what a bit of incentive can Do for your willpower.

Anyway all good, in and out in an hour which included bloods, ECG and a nice cup of coffee made for m by the nurse.

Graciesmall - Thank you for sharing what happened to you, makes me feel less alone, especially when everyone seems to have clear scans. (Of course I am happy for them, but have that sinking feeling about myself.) I am so scared if it turns out to be bad news, can't help feeling that the Consultant and Oncologist are preparing me for the worst.

BCN said that she hopes that the chemo will clear it up. I was like No, I hope that it doesn't do anything, not sure a calcium deposit will reduce anyway, any change to it whilst I am on chemo is a bad sign.

Hope you are doing okay? x

Tiny it is so difficult when you are expecting the worst. Every consultant appointment I have delivers bad news and worse than the previous appointment. I now ask very direct questions and if the consultant doesn't answer or fudges I rephrase the question and keep going until I get an answer. Then I ask supplementary questions to ensure I get the detail. Previously I would listen and nod and ask a few questions and go home. Then I'd get a copy of the London consultant's letter to the local consultant that would set things out in very stark and scary terms, some of which I didn't understand and a lot of which hadn't been mentioned to me.

I'm also beyond worrying about making medical staff feel uncomfortable with handling my questions. I need to know the truth so I know what I am facing.

Foo - Well done on the weight loss.

Difficult - Have you spoken to your Oncologist or Consultant and told them that you seem to be set up to have chemo outside the time frame they have specified. You might find things get moving and a bed is found once they are involved.

Up-dating - You are protected by law against discrimination at work. Here is some information from MacMillan

Might also be useful for you too Betsy. x

X posted Difficult - those letters are awful aren't they? The one from my Oncologist to my Consultant saying that he had spent a great length of time explaining to me about bone mets/incurable cancer made me realise how serious this was. Then when I don't understand something I start to consult Dr. Google - never a wise move!

I google too but sometimes that seems to be the only way to acquire knowledge which I then use to ask difficult questions.

Pickle, I know just what you mean about each appointment giving news worse than the last. A bit of me still doesn't want to ask the questions as I've ended up in some dark places through probing. And those letters... Actually, I've just asked DH to strip them out of my active folder (appointment letters and the like) as I keep accidentally coming across them and feeling sick all over again. Including the one saying that I had been briefed on mets, tiny.

foo, impressive weight loss! Perfectly judged, clearly.

tiny, my counsellor is private and was a recommendation from a friend. Your GP will certainly refer you, but it might be worth asking around for a recommendation as well? A local Internet forum might also be a place to ask. But in fact, I would be comfortable in a GP referral, as you will get a competent, experienced professional. It can happen that your counsellor just doesn't work for you, in which case you should be able to switch, but worth asking what the process is. Oh, and it's worth asking what type of therapy they offer. My counsellor has a psychotherapy background but does a lot as well with mindfulness and thinks about the whole body (if that's badly put its because I don't really have a clue what it means....).

And I meant to say big (((hugs))), tiny. I hope that you can have a bit of a rest this afternoon. Oh hang on. Just seen that you picked ds up from pre-school. No rest then.

Is there anyone else (NHS) who has not had any letters, consultant or otherwise? I've not had a single one, not sure whether to feel like I'm missing out, or be relieved! Even the "pathology report" that the BCN gave me was a very Janet and John version. (When I next see the onc he is going to have a list of qus waitin for him! )

Betsy I was asked if I wanted to be copied in. Although sometimes the info they contain is quite scary I'd rather have them than not. It helps me to feel a bit more in control over the process.

betsy, the hospital sends letters to your GP and they are meant to copy you in. It doesn't work perfectly as a system - I've had some and not others and, as you've seen, would have been happy to miss the ones I got! To be fair, they have always been a reasonably accurate reflection of discussions held.

hi Betsy - I've only had 2 and they were letters to my GP from the onc which I was cc'd on - I wasn't expecting them but fortunately there was nothing unexpected in them - 1 before my mx and 1 after I think. Also I've never been given 'a chat' about mets.

My worry is that although I had MRIs and full body CT I didn't get a bone scan - is this because I don't need one or because my hospital don't offer it (unlikely as I am private)????? Obviously I keep getting various bone aches now .

well done on makeing the BMI cut foo - are you all set to go now?

Thanks for the link Tiny. I'm sure there is something similar here in Belgium although rationally I know that work would not be trying to remove me. I suppose I'm concerned that I would not be capable of the work or would lose my role in the organisation through being away too long.

Talking of work, my office manager thinks it would be a good idea to email the office to explain why I am out on long term sick as people are starting to ask. I agree that once I've lost my hair, I won't be able to keep it a secret any more!! So any wise words - should I come straight out and say it's breast cancer? Or just cancer??

I work in an office of about 20-30 people, some of whom travel a lot. It's an international organisation so I also have a lot of contact with people around the world, some of whom count as being part of our 'office' even though they are based in Canada, UK, Netherlands, Denmark or Thailand.

updating - I was happy for my manager to tell people that I had BC. I work in a large international IT company and if nothing is said it is assumed that you are off with stress (happens far too often in my role) and I just thought it would be easier to get the facts out there rather than lots of gossip. Everyone has been fine about it.

I told my manager and asked her to tell work - public sector. Everyone has been great. I started a blog so people can see how I'm doing without texting all the time.
My little sis got her genetic results today - she is BRCA2 + as well. So gutted for her. She has anxiety and depression too. She wants me to go to next appt with her but it's a chemo day. I've asked my BCN if I can do a different day that week. Fingers crossed.

updating, I emailed my team once I was diagnosed (and the day after I told my line manager) and was completely frank. I have found it much easier to tell colleagues, family and friends that I'm happy for people to know. I see what you mean about the international bit, but I also told a couple of international colleagues (different organisations) to explain why I couldn't come to a big conference and I got some very warm responses. I didn't tell lots of people as I left work suddenly, but now wish I had. On occasion, with less close colleagues, I just referred to 'cancer', but I'm not sure it matters.

I'm feeling very warm right now as a colleague has just visited with a book voucher and list of book recommendations from them all. Really nice.