**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

Congratulations Lillymaid!! Glad all went so well and for the great news.you must be one proud mother

Congrats Lily.

Last chemo tomorrow people, last one. And I still have hair! Just...

24 weeks, 14 sessions (missed 2 to low blood counts) and 35 hours in the torture cap. 35! Nearly a full day and half wearing that bloody thing.

Has anyone had their tumour genetically profiled here, out of interest?

Boobz
Hope you celebrate end of chemo with something nice (especially with the extra torture of cold capping and international travel).

Great news all round lily. I'm so pleased to hear you have been reasonably well on your new regime, long may it last.

Boobz, what a relief for you to have completed that mammoth effort.mhope you get plenty of rest before the surgery.

Hi marshy and royal, nice to see you again.

Boobz, that is some achievement. Celebrate in style!

Hello mrs How are you doing these days? I had my fourth AC chemo today and lying in bed feeling ..well by now we all know!
Brewing some ginger tea from ginger roots. Told it works wonders for abdominal discomfort and the lot.
Lily, it is great you are managing well. May it last.
Nurses at hospital were ever so nice to me today. It makes such a difference. That and watching stand up comedy throughout the session :)

Congrats Boobz. :)
I will be tested for the gene after my surgery, but have been told that it's a six month wait.

Glad to hear about the nice nurses, Royal. Hope that you are ok.

Hi royal, I hear ginger is very good for tummy trouble. I hope it gives you some relief. I guess you now have a few days of feeling rough. It does make such a difference when the medical staff are nice to you. Most of mine have been, but I have issues with one of the radiologists and the surgeon I saw last time was a bit lacking in bedside manner, well good manners really.

I'm ok thanks. All clear from the hysteroscopy thank goodness. It seems my periods are still having their last gasp, unfortunately I still don't know if they're now over. I also apparently have a 2 inch ovarian cyst which will have to be rescanned in January. I know nothing about them and am loath to start educating myself on yet another issue. I'm vaguely aware that if it were much bigger it might have to come out. I've had my latest 6 month check up too so quite a bit of hospital action in the last month...brings it all back.

I still check on here most days but don't post as often. It doesn't seem to be as busy as last summer when I was diagnosed. It was a real lifeline then. It makes me sad to think there may be women reading and wanting help but not seeing much activity so not bothering.

Yay for end of chemo boobz! Hope you are raising a glass of something nice with someone nice

Hi mrs. Good news re your hysteroscopy results and I hope auntie flo doesn't cause you probs for too much longer. I had a cyst which had to be monitored. Between one scan and the next it disappeared. Fingers crossed yours does the same.

Mrs, all in all sounds like your news is good! Cysts are a mysetry but as marshy said they can just disappear on their own. Being monitored although troublesome in that you have to go to the hospital, srill probides the nesessary information that relieves you of any unncessary worry.
You mentioned bedside manners. There was this radiologist once checking me out for something prior to being fitted with the porta cath and she asked me about my cancer and assuming she was being nice or whatever, I gave her a summary about how i found it and how the tumour was small but the nodes were badly affected. Her expression and exclamation to that would have have depressed anybody else, but I just shrugged it off being me.

Hello. Congratulations, Boobz, I hope you can relax now.
Is the ginger working, royal? Wishing you a comfy-as-possible day.

I had my lumpectomy and SNB yesterday. Malign cells found in the nodes so they took more out. I don't really know what that means; surgeon suggested that not necessarily worse but it's not what I was hoping to hear...

I feel worse than I had expected and a bit disappointed in myself. Plenty of help with DD (6) and she doesn't know anything - she has her own health and social communication issues and can be challenging - I don't want to have to ask too much of other people and hadn't been expecting to need to... But I expect I'll feel brighter after a bit more rest and ibuprofen. Sorry.

I may only post intermittently- I hope that's ok. Please know that I am thinking of everyone here going through treatment and worry and that I'm so grateful to have this community.

Dinster welcome back. I had lumpectomy and full axilarty clearnace, so almost the same surgery as you. i too had a lot of negative nodes although my tumour was small. It means they are more careful about the cancer spreading and will plan your treatment accordingly.
Trust me things will get better with the post surgery pain. I can not stress how important doing your strecthing exercises is Dinster. Stick to them religiously. Hope you feel much better very soon.

Dinster
"I feel worse than I had expected and a bit disappointed in myself."
None of this is your fault! Don't be disappointed in yourself. Take any help on offer and rest. When you have something like cancer you have to be a little bit "selfish" in order to recover.

Thanks all. I haven't really celebrated as am in London and DH is at home in Rome, and so have mainly just watched crap telly and slobbed around the house. However I am seeing work colleagues tomorrow and friends on Friday so may have a glass or two then.

Even more so now, actually, as I had an ultrasound today, so my surgeon can see what's going on before operating in about a month's time. I was diagnosed with 3 tumours (the biggest of which was 12mm and was taken out with an excision biopsy to get a proper diagnosis, but not with margins; the smaller two were 4mm and 3mm, so tiny really) - back in March. After all the chemo, today the radiologist couldn't find anything at all. He thought he was scanning the wrong breast! I know I still have to wait and see what the pathology says from the mastectomy next month, to get a proper "all clear", but god it was good to look at that screen and see nothing at all.

So just a double MX and immediate recon and sentinel node biopsy to go.

Welcome back Dinster - I hope you feel better soon. My 6 year old knows a little bit but not that much either, and I hope I can now keep it that way as it looks like we're nearly done with this rubbish summer.

Mrs - good news re hyster-whatsit. Must be such a relief.

Yes it is a bit quieter isn't it? I tend to post quite a bit on my FB group these days, and I suppose posting here too might be overkill, but if anyone is looking for advice or whatnot, please just shout - I am becoming a bit of an expert now with my research! To think back to how clueless and scared I was in the early days, and now I feel like a font of knowledge (but still a bit scared I suppose).

I hope you don't mind me posting, I wasn't sure where the best place to post this would be. I was thinking of putting it in the 'mental health' section too.

Due to family history I was tested and am BRCA1, I had a preventative double mastectomy a year ago. I chose to stay flat, no reconstruction, which I'm happy with and I've got used to wearing the prosthetic breasts now.

In the last year I've found my self esteem and confidence, particularly related to my appearance, has just plummeted. I feel anxious a lot, feel very low and with a very diminished sense of self worth.

Frankly I'm disappointed in myself, I wanted the surgery, I know its the safest option for my family and myself. I know that my self worth as a mother, wife and woman has nothing to do with whether I happen to have breasts or not. I feel like I have no right to feel down because I am so lucky. I was able to take action before getting ill, an opportunity the other women in my family weren't lucky enough to have. So why the hell do I feel like this???

After struggling with it for about 8 months I have given in and made an appointment to see a GP. I'm assuming they'll say I'm depressed and throw a bottle of Prozac at me. Has anyone been in a similar position? I'm not sure what to expect and what the GP will say.

Any advice greatly appreciated. x

Hi Carolyn, I haven't had a mastectomy so can't offer helpful advice but just wanted to say please don't feel badly about feeling low - on top of feeling low in itself. There's such a difference between what we know logically and our emotions. Choosing to have the mastectomy was such a strong and generous decision but you could never have known in advance the effect it would have on your sense of identity and self esteem. Not to mention the psychological hit of having the gene itself. Knowing it was right for you doesn't mean you should be disappointed in yourself for finding it hard! It must require a big adjustment and maybe eight months isn't so long for that.

Going to the GP is A good idea. Do you have access to talking therapies there? Maybe being able to be open about how you feel with someone outside family and friends could help?

Sorry not to have been more help but please don't feel badly for having feelings. However much we aren't defined by our breasts, losing them is a big deal. Sending you lots of supportive vibes...

Hello Carolyn. You made the right decision back when you did, but as Dinster said, you could hardly predict how it would affect you in the long run. It is all fine to say we are not defined by our bodies,but what we fel is real and it is hardly healthy for us to bottle it.
I have not had a mastectomy, but I know many here have and perhaps they could share their own experiences with you. However, may I suggest some ways to cope? Have you tried to get in touch with Macmillan? They could surely point you in the right direction. Also, it would be worthwhile to speak to someone who knows what they are doing. If your GP suggests counselling, I would go for it. Do not suffer alone and do not feel guilty about how you feel. The fact you recognise you need help and support is a great step and one that few people reach. I admire your ability to analyse your feelings and define them. Surely this will help you manage and reach a better place inside.
Best of luck.

Excellent news Boobz

Hello Carolyn, sorry you're struggling I've no personal experience but it sounds like your GP is a good starting point. Do you still have contact with your surgical team? It may be quite a common reaction, and they may be able to help. Otherwise one of the breast cancer charities might be able to help.

You have no reason to be disappointed in yourself, you've been through a huge change, and finding out you have the gene must have brought up all sorts of fears and concerns, which may not have been fully eased by the surgery.

I've no experience of depression myself, but other family members have. You may not be given medication to begin with, they may just talk things through. You'll probably have a questionnaire to assess your current level.

I hope you get some support soon, and please feel free to chat here whenever you need to.

It is much quieter these days, a lot of people deregistered after the hacking and related issues, and haven't returned I don't know if the quietness then puts others off joining, perhaps it's a vicious cycle. I do try to post every so often, but I never have anything very useful to add. The thread used to be very chatty, but I think it gradually evolves to suit the needs of those posting on it at the time. Nowadays people generally seem to dip in and out for information rather than idle chit chat so there are fewer posts. (Not a judgement at all!)

Thanks for the responses. I asked at the time of surgery if there were any support groups that I could be put in touch with but they said that there were groups for cancer patients but that it wouldn't be appropriate for me to join those. I'll see what the GP says, I'm sure they've seen it all before!
I feel better having made the appointment.

I think the thread is still useful for people like me who don't do Facebook .

My initial BC diagnosis and treatment were so long ago now (8 years) that my experiences are no longer relevant to people being diagnosed today. But I do remember the sheer gut wrenching terror of that diagnosis so I would like to help people going through that with some kind words if I can.

Plus I like to hear Amber coming on every now and then to tell us all it will be OK and new science will sort it all out.

Carolyn - it is ok to miss your breasts, I miss mine. It doesn't make you shallow or silly or vain. I hope you get a chance to talk it through properly with someone in real life. It's a lot to come to terms with.

I'm at the beginning of treatment, am not on Facebook and am so grateful for this thread already. Please keep posting!

I get my surgery results tomorrow and it's been a long week. I'd been hoping to take DD on her school trip today but am finding recovery slower than I'd thought, so DH has had to take a half day. I hate that.

Oh well, roll on tomorrow and at least I'll have a clearer idea of what's ahead.

Hope everyone has a good day. I love this time of year...

Hi, can I join please? Recently diagnosed (2 weeks ago) and feeling so scared. I went with a 2 cm lump in breast which the nurse said felt benign, it didn't show on a mammogram but could be seen on ultrasound as a dense area. Biopsy urned out to be an invasive ductal. Went for MRI which shows cancer more extensive than first thought and more than one tumour but all in upper outer quadrant. They are now talking about doing chemo first to shrink it before surgery in order to preserve my breast. Also have said need CT scan before chemo starts? Is this this normal? Terrified that they think it likely it has spread outside breast to other areas. Really don't want the scan as every successive test I have had so far has brought worse news. Can't sleep and feel constantly sick right now!

Hi Fresta
Quick welcome from me (as I am at work ...)
Sorry you have to join us. It is a terrifying time when you are first diagnosed. Once the treatment path has started it gets better (honestly!)
I went through an initial diagnosis followed by further scans that revealed secondary growth in my bones, so can understand why you are worried, so I hope it hasn't spread in your case.
Feel free to ask us questions/vent etc - we have all been there!

Welcome, Fresta. It's a horrible shock, isn't it? I'm totally with you on the insomnia and worry - I'm thinking of you and sending support and will be when wide awake at 3am too!

I don't know about CT scans but I can understand why the prospect of more investigations is really scary although I think uncertainty (and waiting) is tough too - imagination fills in the gaps with all sorts of nasties.

Are you getting good care so far? Sorry not to have more knowledge to offer but I hope you manage to get some rest today and some more answers soon.

Sorry, I didn't mean that imagination is worse, only that it can leap off in random directions, if that makes sense.