**Tamoxigang 53** Roll up, roll up... Anyone with any cancer (or test-waiting) welcome!

[MarthaCostello]

Good evening all,

The old thread had nearly run out when I posted so I have taken the liberty of starting a new one before it fills up completely.

I hope the title is OK - there isn't actually that much room, I was trying to fit in that people should come along even if they haven't been diagnosed yet.

If you're new here welcome to the Tamoxigang thread. This is a great place for anyone with any type of cancer (it originally started out as those taking Tamoxifen for breast cancer, hence the name, but has expanded). Please introduce yourself and make yourself comfortable! You're more than welcome here if you haven't been diagnosed yet too, sometimes people find it helpful to talk through their fears whilst waiting for results. And we will hold your hand until you find out, and hopefully wave you on your way with an all-clear :)

There is almost always someone around to chat, or to answer any questions. Nothing is off-limits here. This is somewhere to offload any fears and frustrations, in a safe place where someone will have been there before.

I hope everyone has been enjoying the gorgeous summery weather

Am I allowed to join if it isn't me but a family member???

Hello alwaysabattle, I'm sorry to hear your family member has cancer

Of course you are welcome to post here. Please do ask any questions or tell us about yourself/your situation, and make yourself comfortable

My only warning would be that sometimes people will post things that they don't feel able to talk to family/friends about, for fear of upsetting them, so they might be difficult to read.

There used to be a thread for people with partners with cancer, if it is your partner, but I'm not sure if that is still running. It is a shame that there doesn't seem to be one for family members in general, I think sometimes the experience of cancer can be quite different as a patient and as an "onlooker". In some ways I think it is more difficult to be looking on and feeling powerless. Although given the statistics on cancer now, chances are many of us will be on both sides of the experience at some point!

Sorry that's a bit rambly. Anyway, welcome, it's lovely to meet you :)

Good post Martha. Yes, I don't like it either when people call me brave or inspirational. What choice do I have anyway? I am just doing my best.

I had chemo today- only one more chemo to go, yay.

Hope that you are all ok. X

Yay for one more chemo hotchoc that's brilliant do you have any plans to celebrate after your final cycle? I hope the side effects aren't too bad

Hotchoc that must be a relief.

Royal - I had my hair cut quite short pre treatment to help with cold capping. Here are an assortment of pics - the BW is the day before first chemo, and then the blue top one is 3 months later after 4 rounds of EC, and then the last one where you see the top of my head is after 1 week of tax. I had my second tax on Monday and I have shed more hair this week which is troubling me as I thought I was doing so well not to really have lost anything at all, but it seems to have stopped for now, thankfully. I still have another 10 x weekly tax to go, so I don't know if I will still have a decent amount left at the end of it, or whether I will have to shave it off at some point.

I would advise not going for a SHORT short pixie crop, as then you won't be able to disguise any thinning patches (comb-over style!)

As we are sharing chemo experiences... I found diagnosis ten times harder to cope with, tbh. The first load of chemo (EC) was really ok - a few mouth ulcers, a bit of dry-eyes syndrome, and a little tired the day after the actual chemo. Other than that I have worked full time through the lot.

Tax has been harder - I am more tired, and a bit of the runs! But again nothing too bad. The problem with my second 12 x tax (and some carboplatin thrown in for good measure) is that I have to get on a bloody plane every week as well, and do a 24 hour chemo-fly-by from Rome to London every week, which is proving quite tiring. And now, for some reason, I am finding the cold capping horrible, having initially not been too bothered by it... just the noise of the machine turning on makes me feel now. So I feel a bit sick during chemo, but it's all psychosomatic (sp?) from the cold capping rather than the actual drugs! If I have the shower turned down too cold at home it makes me think of it immediately and I feel sick again!

So after initially sailing through it, it's now catching up with me a bit, so am going to work a few less hours a week to compensate and not overdo it. I think emotionally tax has hit me a bit harder as well - not sure why.

Am now trying to prepare myself for double MX in November - how long will I be in the UK for/how many times will I have to fly back for post op check ups etc? All too much to think about right now - a glass of wine might be a better idea.

Glad you are nearly done Hotchoc! And hope lumps/moles are nothing sinister.

Martha I also dislike the "fight". And brave.

makes me feel sick* now

boobz thanks for sharing. i must confess you look fab. Can I ask about the eyebrows and eyelashes too? Did you lose anything there and how did you compensate if so? Cause you look great honestly! i have yet to know the names of the chemo combos i am going to get, and i do know they differ in their effects, but I was told it would be gruelling ( something about dense dose).
boobz your DC look lovely. Bless. How are they dealing with this whole cancer treatment thing? I ask cause I am slowly starting to prepare my own DC for what will be coming up.

Hi I was around on a previous thread asking for advice for how I could help my friend who'd found a lump and you were all wonderful.

Well I have an appointment at the breast clinic.
I had a boil on breast that was initially hot red inflamed and then burst but 6 weeks on its still there, more purple now but still leaking if I squeeze it or take bra off.
I thought the GP would look at me like for going to get it seen but he gave me antibiotics and referred me to breast clinic.

The appointment has come for in a week and now I'm scared.

Does anyone know if all referrals are seen that quick or just 2 week wait ones?
What can I expect at the appointment, letter says to allow 3 hours?

I feel like I'm wasting their time as it does look smaller but a tiny bit of my brain keeps saying what if they say it's cancer

Hello Chesty, but sorry you've found yourself back here! Hopefully it will only be a flying visit :)

I don't actually know, but I wonder if all breast clinic referrals would be under the two week rule regardless.

I will wait for someone who has actually visited the breast clinic to give you a better idea, but most people have various tests all in one day, and see a doctor/nurse. They can sometimes give results on the day, but if you need a biopsy then you would have to wait for those results.

Do you have someone who can go to your appointment with you?

Hi martha yes DM is coming with me.

Must stay away from Dr Google!

Hi chesty, I didn't want to read and not reply although I don't know if I can be much help. What you have described doesn't sound like anything I've heard of before, certainly not on here in the last year, so that's probably positive. I'm not sure about the timing of the breast clinic, maybe yours is not too busy?

But remember, there are many conditions that affect the breast other than cancer. As only about 10% of people of people who turn up at the breast clinic have cancer there are obviously a lot of other things going on and hopefully what you have is some other wierd and wonderful condition that won't turn out to be too scary.

But this is just the right place to come in the meantime, until you've got some answers. It's a scary time, we all acknowledge that, hopefully you won't be here for too long.

Nanny can I just say that as someone stood on the edge, it is actually helpful to have a view from the 'dark side'. The media sells us all the fighting, brave and beating images and yet everyone knows that it isn't the whole story. Most people realise nobody feels 100% positive 100% of the time and it's a good thing to talk about it somewhere safe.

I have a question tonight. I saw the consultant on Saturday who said mammogram and ultrasound. I have the mammogram tomorrow but the ultrasound appointment is more than 2 weeks away. And I haven't got a follow up consultant appointment. I've technically seen a consultant within 2 weeks but I won't have a result until nearly September. The two week thing only mentions seeing a consultant. Should I kick up a fuss?

Yes Mrs I'm sure it will be nothing, just really wasn't expecting the referral or such a quick appt. think that's what's thrown me, being a HCP doesn't help either, a little knowledge is not always a good thing.

giddy that seems a long wait when your understandably worried. I think our clinic is one stop sort of thing. Presume that's why have to allow 3 hours.

Hi giddy, that does sound very drawn out and I feel for you. I would say that most people here have been seen under the two week rule and have had all checks and tests in one session. Your hospital could be struggling to manage that hence you seeing the consultant quickly but the rest being delayed. I think I would be mentioning it to someone, it's not really following the rules properly. The trouble is whoever does your mammogram will tell you nothing whereas the radiologist doing your scan is more likely to comment, so you'll be no clearer today. You could ask the radiographer doing the mammogram about their system. Good luck.

Thanks Martha and Royal. No plans to celebrate but I guess that's because I know that I will be having an mx in late Sept or early Oct and it does put a bit of a dampner on things.

Boobz, sorry to hear that you are struggling. It does make sense to cut down on work hours to look after yourself more- work will always be there when you are better. The cold cap stuff does sound psychological.

Strangely, my hair is still growing, even after 2 tax. I will shave it all of (for a forth time) if it grows back patchy though. It's just scrub at the moment. I still sometimes have to shave my legs too.

Giddy, I hope that the mammogram goes well and yes I would bug them about a consultant appt.

Chesty, I guess you will have a mammogram, biopsy and maybe an ultrasound. Hope it's all good news.

Does anyone know if steroids given for anti-sickness make you put on weight? I am getting fatter every month but my diet is the same and I still do some mild exercise.

Royal my eyebrows have thinned so I now buff them up with a Bobbi Brown eyebrow pencil. I do them most days, and I think they look better now than pre treatment as I never did anything with them before, but now they are darker and more defined (from the colouring in) so frame my face better. And there is still plenty of hair there not to make it look properly drawn on like you see on some ladies on the tube (that's where I always tend to notice overly made up people - not sure why!) Before treatment started I nearly spent a small fortune on getting them tattooed, but am glad I didn't bother now and saved the money instead.

Eyelashes seem about the same but I never had long luscious lashes so a lick of mascara and they look the same really.

I went to Bobbi Brown and spent over £550 on the day before I started chemo, and had an hour long lesson which I had booked in with the manager of the store in Covent Garden (a lovely chap called David). Having never spent more than about £50 a year on make up, and rarely doing more than lip gloss, some bronzer and a bit of mascara, I have really upped the ante at the grand age of 36! My DH is over the moon as I look really healthy and pretty now, despite my cancer, as I do the "full face" most days when I am working/going out with friends etc. He thinks it's funny that it has taken cancer to get me a stylish hair cut and a glowing made up (but not OVERLY made up) face! Silver linings.

Re the DC, we have told them "mummy has a plug (my port in my chest) which has to be filled up with medicine every week to help my poorly boob get better", and that is it. Nothing about cancer, nothing about being ill per se. They totally accepted that and we are now carrying on as normal. They are 6, 5 and 3.

Hotchoc - my onc told me that the steroids don't make you put on weight on their own, rather they just make you eat more, and generally you are more lethargic on chemo so don't move around as much/exercise. I have managed to only put on a couple of kg since starting treatment but I am still doing Insanity/Barry's Bootcamp 4 or 5 times a week (am an exercise nut). I think this will get less now the tax is making me more achy, but I hope not! My onc thinks I am a bit barmy as I fly into the UK on a Monday evening, do a 7am Barry's Bootcamp class on the Tuesday and then start chemo at 10am. I like doing the class on chemo day though as it's when I feel the least tired, and there is nothing like Barry's in Rome, so it's my treat before treatment every week before then hopping on the plane back to Rome later the same day. Not sure how long I can keep this up for though!

Thanks Boobz I appreciate your feedback. I am noting everything I am told re hair loss and appearance etc and hopefully will be well prepared:(

Hi all.

Chesty - you asked what goes on at a be clinic. I saw the consultant, then had a mammogram and biopsy, then waited around for the results, and then saw the consultant again. Also had a chat with the Bc specialist nurse. I wasn't expecting to be at the hospital all morning but I do recall it took a long time. I always take a book or magazine with me to read now, due to,the waiting around between each part of the day.

I think that anything referral to the breast clinic is done within two weeks.

Booz - lovely photos and a lovely haircut. Hope all goes well for you.

Nanny - sorry you are having a tough time. Thank you for your honest post.

Giddy - hope it all goes well. I had a mammogram on Tuesday and had a consultants appt booked for two weeks later. However, I couldn't make that one, and the next one they can give me is mid September. Mine is a three year mammogram, not a first one. There's no harm in phoning up the medical secretary of the consultant, and seeing if you can get an earlier appointment.

I saw the consultant today who confirmed I haven't got cancer ( I was being tested for womb cancer). However they did find abnormal cells which turned out to be endometrial hyperplasia. This could develop into cancer. I now three choices, one to repeat hystercopies twice over the next year to see if there are anymore abnormal,cells, to have a coil fitted ( not always recommended in bc patients), or to have a hysterectomy. I thought I'd escaped the last option when I knew it wasn't cancer. Because I' m not at immediate risk, I don't have to decide straight away. I was hoping I would step off the cancer treadmill today, but it continues a bit longer...

And to add insult to,injury, my car broke down today and is now in the garage and will be there for a few days. I don't mind admitting I shed a few tears whilst waiting for dh to come. It was one of those days when you can't cope with much. Ended up thinking s*d the diet, and had fish and chips for tea.

I think this is the longest mm post I have ever written, so thank you for reading.

Rivercam i am so sorry you had to deal with all that. I feel for you re the womb issue..it is like damned if you have cancer, damned if you don't. Since you have time to pomder the options, you can focus on some other things in the meantime till you are ready to decide. Wish you all the best.
Sometimes, I wonder just how much I can deal with when I find a barrage of issues suddenly coming at me with a vengeance. It is like being under attack by a non stop tennis ball throwing machine and you have no choice but to dodge a few, hot a few and get hot by yet a few more.
Today is my birthday and I can solemnly say this is the "weirdest " one I have had to date. We should have been on holiday in the Alps, but here I am with a new annoying companion called cancer.
Oh well.

Thanks River I'm hoping they look and say "oh it's fine"
I think you definitely deserved fish and chips, sounds like a crappy day.

Royal sending you birthday wishes, hope it's been as nice as possible

Thank you chestynut ..as you said as nice as possible, and somewhat emotional with DC :(

Hi everyone. I was on the last thread asking about likely effects of radiotherapy and got some great advice. Well it's all done now and whilst it was quite uncomfortable at times, my skin recovered pretty well and is almost back to normal. I'm now supposed to start taking tamoxifen but feel very resistant to the idea tbh and wondered if anyone has any thoughts about this? I asked the oncologist what difference it would make percentage wise (cancer was grade 1, stage 1, had WLE and rads) and she ran my stats through her programme and said 1% to survival and, with further pushing, 8% difference to recurrence (both over ten years). So according to the programme, chance of non-recurrence is 82% but with tamoxifen increases to 90%. Obviously I don't want to go through it again but the thought of feeling ill for the next five years feels me with horror! And it could still come back (sorry to be so negative). BCN said that most people at least try it although acknowledges that the drop out rate is high. I don't even know what I'm looking for by posting here but would appreciate any thoughts on this even if they are that I'm being a wimp and should just get on and take the bloody stuff!

Hi Queen Firstly well done on getting through the radiotherapy. As for the Tamoxifen, that is very much a personal choice. I have been on it for 14months, and have really struggled with side effects. Recently I spoke to Oncologist about stopping, at which point I found out, in his opinion the first 2 years are the most important. So I am going to try and stick with it for another 10months.

Having said that, lots of ladies have minimal/no side effects. So you could be one of those, in which case taking the Tamoxifen would be worth doing. It is surely worth a try? At least you will know that you have given it a chance!

Good Luck with your decision, only you know which is the right decision for you xx

Royal Wishing you a Happy Birthday. It's not the birthday you were hoping for, but I hope you managed to have a good day. Xx