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Original poster

**t*a*m*o*x*i*f*e*n** number 14

985 replies

MaryAnnSingleton · 05/10/2011 18:19

here we go !

OP posts:
Original poster
MaryAnnSingleton · 13/10/2011 18:47

cheers to NED !

OP posts:
KurriKurri · 13/10/2011 18:56

Got my Wine have toasted NED,

The Gu puddings aren't coming until next week MAS, - there is some sort of stock problem apparently Hmm Good news about the cheeselets Grin

topsyturner · 13/10/2011 19:19

Who the flip is ned ? I am raising a glass to him anyway Grin

Am most definitely on the up this week , thanks for asking smee . The ability to drink wine helps !

Original poster
MaryAnnSingleton · 13/10/2011 19:39

NED is no evidence of disease Grin

OP posts:
topsyturner · 13/10/2011 19:55

Aaaah , well here's another glass to ned Grin

forpitysake · 13/10/2011 19:58

driftwood I'm so very sorry to hear your news...Sad Sad

Nobody here would think you are wingeing! You have just had a hell of a shock. One of the biggest shocks of your life probably.

It's sounds right that it may take days to adjust to how it makes you feel. Taking it all a day at a time sounds like the only way to tackle it.

I found information on emotions on dx on the breast cancer care website. Will try and do a link for it for you if you haven't seen it already. Everything you will be experiencing is normal and people like pranma are proof that it doesn't have to be the death sentence people assume it will be.

Original poster
MaryAnnSingleton · 13/10/2011 20:03

forpitysake andjane - can you pm me your facebook names and I'll find you and invite you Grin

OP posts:
smee · 13/10/2011 20:34

I didn't know what NED means either, but I'll raise a huge glass of cheer to it. Pranma, I'm so, so pleased for you and you'll cheer my friend who's triple negative mightily. I've just e-mailed to tell her. Smile

Well done to your DS, Kurri. That's worth a toast too. Smile

Topsy, v. glad to hear you're on the up. Just one to go now and I'd bet it's so blitzed that you'll be fine. Smile

Thought I'd get rid of second drain today, but they said no as it's only down to 70ml. I'm thinking wine may help. Wink

Driftwood999 · 13/10/2011 20:43

forpitysake It helps to be prodded I know! I fully get your meaning...Thanks for the comments, also I am heartened and pleased by the good news of others on here.

Iamseeingstars · 13/10/2011 20:49

Sorry Driftwood to hear you have had your worst fears confirmed. You are amongst other people going through something similar and I wish you all the very best to help you get through it.

Thank you for your support re my hermit habits. I am surprisingly not depressed and do have a positive outlook, even though my treatment could actually kill me (dont you love doctors). I just cant see the point of going out, but have recognised this as an issue so am going to do something about it - promise - she says every day.
Friends always say call them any time but they are all busy with their own families and sometimes they are just not available when I want them to be.

Re the radiation and why it is different for different people. Went to listen to a Radiation Specialist the other day and he made it very clear that you must never compare what treatment someone has been given. He said that you could both havethe same diagnosis, but one person might get one minute a day/week/month and another person might get an hour a day/week/month.

All treatment is assessed based purely on each person and that you must never think that someone is getting better treatment because they have more/less radiation.

This is where we found out that any radiated area is sun sensitive for the rest of your life.

Driftwood999 · 13/10/2011 20:56

Something that was mentioned today, about the removal of lymph nodes, that it can lead to problems with the arm. I have the info pack but cannot yet approach it and I know when I do it will be the official version. Has anyone experienced any arm/swelling promblems? I want total brutal honesty in order to make my decisions. Please?

Driftwood999 · 13/10/2011 20:59

Fuck, why have I been told today I will need Mon-Fri radiation treatment for a month?

topsyturner · 13/10/2011 21:08

Drift - the information pack I was given on my day of diagnosis (beginning of May) is still in the boot of the car ! I just couldn't bring myself to look at it . And honestly , I got better information off the ladies here .

As for the removal of lymph nodes , I had a complete clearance of m ine . They give you (hospital physio should visit you on the ward) gentle stretching exercises to do that theoretically should stop any swelling .
I didn't get any major swelling , but I do have a sort of bulge at the back of my armpit area . Nothing that a vest top doesn't sort out . I do have a lot of numbness in my armpit , across the top part of my arm and across my chest . But this is because I had a mastectomy and total node clearance , and that involves cutting the nerves .

I have no info for you re rads . Not having them myself . But I do believe you have to go every day for a number of weeks .

Remember , ask us anything . No subject is taboo . I told everyone how I wet myself in M&S the other week ...

topsyturner · 13/10/2011 21:11

stars I am a naturally insular person . And would happilly go for days without seeing anyone outside of my family (and that's just cos they live with me !) So I can understand how you feel .

Like you I am trying to make myself do a bit more , I don't drive so that doesn't help matters .
Baby steps eh /

KurriKurri · 13/10/2011 21:15

Driftwood, - I've had my lymph nodes cleared, I haven't experienced any arm swelling, although I know one or two people who have (on this thread Pink has been having problems, - I hope she doesn't mind me saying, - but I'm sure she can give you helpful info.)

IME (and I go to several breast cancer groups, - support, fitness etc.) it is a minority of people who get lymphoedema. But of course if you are in that minority it is not pleasant to deal with.

Also you have to be careful with your arm on that side, - because there are no nodes, you are much more vulnerable to infection. So gloves for gardening and cleaning, and quick action if any looks like it might be infected.

The mon - fri radiation treatment sounds fairly usual to me, - are you worried by the length of time involved? Most people have 3 or 4 weeks of rads I believe.

Driftwood999 · 13/10/2011 21:17

how long before you can go back to regular exercise after a lumpectomy, on average, say for water aerobics?

forpitysake · 13/10/2011 21:19

will someone please tell me to stop googling.....it's not healthy, is it? Shock
I just want Tuesday to come so I know whats going on, but I don't want it to be Tuesday yet IYSWIM Smile

forpitysake · 13/10/2011 21:20

ooh good question drift

amberlight · 13/10/2011 21:39

NED = no evidence of disease, in other words it's gone.

Sentinel node removal - had that. The chances of lymphoma after it are much less than if they take all the lymph nodes out.

Radiotherapy - I'm about to start my month of it. Yup, 5 days a week.

Googling is great for scientists, and scarier than hell for the average googler, as there is 90% total rubbish out there based on statistics from the Stone Age when all they had to treat us was two lumps of rock and a dinosaur bone. The most modern statistics aren't even on the internet, to be honest.

smee · 13/10/2011 21:57

You need the scar to be totally healed for anything water based after the op. I had my op last week though and the scar's nearly there.

Driftwood, 4 weeks is normal - I had 5, some have 3.

forpitysake, step away from Google. Ask us any and all questions no matter how basic, daft, trivial or terrifying.

Dimwit here just caught my drain on the chair as I got up, so the vacuum's gone and I have no spare. Poor DH has just arrived from work and has had to go hurtling off to the hospital. Blush

DeeScent · 13/10/2011 22:08

I've banned myself from Google and I am usually little Miss Maximum Information Gatherer, so it's useful to know that the stats might be out of date anyway so I'm not missing much.

Smee I hope you get the drain sorted soon and have good night.

Driftwood999 · 13/10/2011 22:10

Thanks Smee, I know it's going to be individual but it's going to help me to know an average iykmm. Swimming is a major activity for me and I want an idea of the healing process for say the average lumpectomy and sentinel LN procedure.

Driftwood999 · 13/10/2011 22:12

What is a drain? My thoughts are with you Smee and what that must involve.

pranma · 13/10/2011 22:16

I had three weeks of daily rads[5 days a week] following wle and chemo[4xfec and 4x taxotere].Fec and taxotere are types of chemo.I had a lumpectomy and node sampling-I did the exercises religiously and never really had a problem with stiffness.I developed a bit of lymphodema in the breast which took a while to go and my chemo left me with slight peripheral neuropathy in finger tips and toes but in most ways I feel better than I did pre bc.I went to WW and lost 3 stones which helped :)If I can help anyone just ask here or pm me.

topsyturner · 13/10/2011 22:25

Drains are tubes that are inserted into your operation site (whilst you are knocked out) and the tube runs into a bottle and drains any excess fluid .
Normally only kept in for a max of days . My hospital wouoldn't let me out with drains in , but others allow you home .