**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

Hope you remain nausea free Anna and everyone else has a nice weekend.

DH and I are off to Edinburgh in the morning for a couple of nights, it's going to be freezing but I'm hoping it might get me into the Christmas spirit, I'm not feeling it at all this year.

Nanny what a complete bugger for you. The spots are probably nothing but of course you will fret about it. I hope you can put it out of your mind but I know that's hard to do and it will pop back sometimes.

Wishing those enduring chemo delights all the best.

Mrs Edinburgh will be fab. Have a lovely time.

I'm glad it's nearly the weekend. Work has been very busy with late finishes and I'm still not sleeping too well with the dratted pain in the bum - was awake at 4.30 this morning then up at 7 for a long day.

Love to all.

Morning everyone- thanks for the thrush advice- think it's clearing for this time now, but will be stocking up on something for the next cycle. Been given corsodyl by the hospital but its the same one you can buy in the chemist.

Trying to put my positive head on today- been looking into buying a nutribullet in order to up our intake of veggies and fruit- a green smoothie to start each day? Has anyone else changed their diet or lifestyle in order to try to beat their cancer or prevent a recurrence? I'm not sure whether I believe it could make a difference or not? I always though I was pretty healthy until now anyway, so it hasn't helped so far. I didn't really have any of the risk factors for breast cancer!

Going to see Spectre later and cooking a curry! Hope you all have a good weekend!

Hi fresta, i used to consider my diet to be healthy. I never drank coffee, never drink fizzy drinks, never ate fast food, etc. and my family have absoluteky no history of any sort of cancer!
I know there is so much out there claiming your diet can affect your outcome, prognosis and even whether you actually can get cancer, but nothing is conclusive. Having said that, I have started cutting back on sugar a lot and try to eat more fruits and veggies(no harm in that!) but I am not drastically changing what I eat and drink.

Hi everyone
I have had a good day today. I went to the hospital and was told that last week's lymph node biopsy was all clear. The surgeon said he will also remove the sentinel nodes during the mastectomy, which seems to be standard. So hopefully nothing will be missed which is always a worry. My GP called me in the week for a chat which was unexpected and her kindness was appreciated. The original referral had been made by a different doctor who I hadn't seen before in the practice.

I have my date for surgery now and it fits in very nicely with my study plans. I'm a bit worried because I will be in hospital during the junior doctors strike. I really think Jeremy Hunt is wrong about the junior doctors. Every time I have been in hospital I have seeen the same doctors on the wards in the morning and then late at night the same day. I knew he was a numpty when he tried to close Lewisham hospital A&E - an area where thousands of new homes are being built.

I will be on a heparin infusion which needs very careful monitoring, with frequent (8 hourly) blood tests and dose adjustment. Last time I was on this my test results fluctuated a lot, putting me at risk of bleeding complications. So it's a bit scary that the hospital will not be running to full staffing capacity.

I hope everyone has a good weekend. I have work tomorrow - my Saturday job even though I'm in my 40's! It's definitely chilly so I have the heating on. I'm thinking curry too.

Food and drink and cancer? Every time they think they have a link, wait six months and someone else disproves it.
As long as people are enjoying life and eating nutritious things a good bit of the time, and doing a nice bit of walking here and there if they can, then that's all that really helps. Well, that and sleeping in really dark room, talking to GP about taking low dose aspirin every day, taking lactoferrin, and taking a good dose of curcumin. Vitamin D is helpful also. That's all proper oncology science, not 'woo'.

Forgive abrupt style. Waving to all and sending love.

Fab news mysilly, all looking good

I'm sure the staff will be pulling the stops out to make sure everything essential is covered but you know your health and how you feel so if you think something needs doing then don't be afraid to speak up (nhs worker here)

Amber thanks for those reminders. I always like 'to the point' myself especially when it's useful info from you

I had a migraine today. Was a distraction from the sciatica at least.....Feeling better now thank goodness.

Wishing all a good weekend.

Thanks amber, I suppose anything that makes you feel better won't hurt, I intend to eat well and excercise more when I have finished treatment, don't want to feel it's something I did/didn't do if the cancer does return. Will look into those supplements too- are they useful during treatment or better to start after the chemo?
What do you think about anti-oxidents during chemo, I don't mean supplements, but just trying to eat extra in the diet. There seems to be two schools of thought on it. Some oncologists think they might actually help the cancer cells protect themselves from the chemo as well as normal cells. Others think not. My instinct is to try to help my body recover from the chemo by eating well but then wondering if I'm helping the cancer grow?

That's good news mrssilly, have a good weekend everyone.

Glad you got that good news mysillydog.
Fresta, there are food items to be avoided if your cancer tested hormone positive, take aniseed, fenugreek and sage. These can boost estrogen levels and hence are to be avoided( which is easy).

fresta it's always a good idea to speak to your team before changing anything during chemo, but I can't imagine a healthy diet would be a problem. But be gentle on yourself and eat comfort foods when you need them. My oncologist specifically warned me against taking curcumin or other antioxidants, but that was because they'd been found to interfere with my chemo, whereas as you say they can be helpful with others. I had capecitabine and oxaliplatin for bowel cancer, so not the same drugs you're likely to be getting. But you can always ask your oncologist what's best for your situation :)

I tend to ignore all dietary stuff because I'm on a restricted diet since my op and there's not much I can do to improve it without making myself quite sick. I take vitamin D, probiotics, a multivitamin and iron, and hope for the best.

I did read Anticancer by David Servan-Schreiber before I started chemo. I keep meaning to re-read it, though it's probably a bit out of date now, and he has since died

Waving to everyone, I hope you have a good weekend

Sorry that was a bit unclear. I was told not to take supplements, but not to worry about small amounts in normal diet. I think you'd have to eat an awful lot to get the same amounts as in supplements.

Evening all. I have just come back from a 'Younger Women with Breast Cancer' conference run by Breast Cancer Care. I found it a really useful experience and would definitely recommend it to others. There was a mixture of people there from people like me who have finished treatment (apart from Herceptin) and those who are still in the middle. It was nice to share experiences and feelings and, although it might not be for everyone, I found it very helpful. Am definitely not looking forward to experiencing the possible menopausal symptoms that we discussed though!!

Anna- hope the sickness stayed away.
Mrs- hope you are having a lovely time.
Mysilly- good news about biopsy.
Marshy- sorry you have been feeling so uncomfortable. Not nice.

Hope everyone has a good Sunday.

Supplements - I took them during chemo, and continued afterwards. I am not any sort of statistical sample, but I worked through chemo, and had a pCR (lump completely went away during chemo). Could be totally unrelated. Or not. Either way, it was all do-able, and there's good research to back up each thing.

Another week begins, hope everyone managed a good weekend.

I have beem having hair dilemmas, or rather 'lack of' hair dilemmas. I really can't get used to the wig! I just feel as as if everyone is looking at it (even though they aren't)- in some ways I feel like it is like pretending to have hair and feel really conscious of it. Been wearing a lovley hat I have while out and about, and this is great until I go inside- then it feels odd not to take it off to have dinner in a restaurant! I have one of the cotton caps and thats fine for at home and I've tried scarves but they really don't look good on me- not my style at all. More experimenting needed to find my style.

This week I have an MRI to check response to chemo. Hoping it's good news- I'm convinced my lump has broken up a bit so hope I am right!

Hope you get wig/hat dilemma sorted Fresta. I found wig difficult so wore hats with scarves tied around.
Fingers crossed for lump shrinkage. When I had appointment with oncologist they always used to have a feel to see what had changed.

I've had no problems with wig wearing and wear mine to work every day and when out at weekends. I wouldn't like to go out wearing a scarf/turban/hat as I feel it would draw attention to myself. It is still going well second time round.
Supplements - my oncologist told me not to take any this time round. I think the answer is always to ask your oncologist before using any.
I am mid chemo at the moment and it looks as though I may have a longer course of treatment as my tumour markers went up during the first two cycles ... but are going down now. I will be sick of wearing the wig if the treatment goes on too long!

Thanks speedy

Maybe I haven't found the right wig yet? I did go into a shop at the weekend and tried on a couple, but most of them just looked hilarious to me, and DH didn't like the one I thought was the best. I know what you mean about drawing attention Lily, luckily it's been quite chilly and a winter hat doesn't look out of place at the moment. I tried a trilby with a scarf under it which looked really cool, but would have to keep the trilby on as I don't like the scarf on it's own.

Hope your chemo doesn't last too long Lily and you can start growing back soon.

Hi everyone: I hope you don't mind me posting. I've spent the last day reading this thread and its so far the only place on the internet that hasn't made me cry so I was hoping people may have some experience they could share.

My mother has just been diagnosed with a 4cm tumour (breast cancer) and will be having a CT scan and bone scan in the coming week. She has had blood tests to check for receptors, I think? (I'm not really sure about terminology but it is to see if they will be receptive to herceptin, she was told that much).

This was already a huge shock, but since googling (I know, I shouldn't have) I have now realised that is seems likely it may be inflammatory breast cancer. I understand this is very rare, but it seems to tie in with how she presented: she had a sudden onset rash and a painful lump and redness which all seemed to appear over a day or so. She was checked by her GP for breast pain about 3 months ago who didn't find anything, which seems unusual given what a large tumour it now is; unless it is IBC, which I understand moves very quickly. She was given antibiotics but, unusually, had a biopsy taken at pretty much the same time as well as an ultrasound and was referred to a breast clinic (I thought it was precautionary but realise now they must have suspected right away). The biopsy showed it was cancer, but in the week up to the consultant appointment the antibiotics seemed to make the rash and inflammation almost disappear: which I understand is unusual in IBC. The ultrasound suggested it wasn't in the lymph nodes, which again I understood from reading is almost always the case in IBC, but it may simply be it was caught unusually early for that kind (I didn't think you could determine definitively it wasn't in lymph nodes by ultrasound alone, but this is what my mother took from the conversation with the consultant). The consultant hasn't given any further information or discussed the type and has said they will talk about staging and a treatment plan after the test results. Initially, she had said it would most likely be chemo then surgery, but apparently after she saw the inflammation had gone down she was surprised then suggested maybe it could just be surgery.

I was feeling reasonably prepared, and positive, when I first spoke to my mum: I assumed it must have been caught relatively early and thought if it hadn't made it to the lymph nodes that was a very good sign, but then I read about IBC and have basically dissolved since then. I don't want to repeat the prognosis rates but they are shocking, and seem to be a tiny fraction of what 'normal' breast cancer survival rates are. It also seems it is incredibly aggressive and always diagnosed at stage 3 or 4. I have been calmed somewhat by reading your stories, and especially what amberlight has posted about statistics on the internet being out of date. I really hope this is true. But I haven't found anybody who has successfully addressed IBC, and I also don't know if there is still a possibility it might not be that. I know this thread is for people who are going through cancer themselves so hope you don't mind me posting: I feel in such a dark terrifying place right now and am just desperate for some kind of hope.

If anybody does know anything about IBC, or whether it is possible that the positive response to antibiotics could mean it isn't that kind (though if I am honest, my assumption is the biopsy would determine the type, though I don't know that) I would appreciate so much hearing your thoughts.

Hi Lucy, I read your post and wanted to respond, although someone with more knowledge than me will soon be along, I will do my best.

As far I know it doesn't sound like inflammetry breast cancer as you wouldn't normally get a lump with that as I think it affects the whole breast. It's possible she has an infection as well.

I know it is very worrying, but she is in the care of the doctors and they will be doing the best they can for her. All types if breast cancer are very treatable and the outlook is good. The biopsy will have determined the type of cancer and I was told mine at the time of diagnosis so it may just be a case of needing to ask. Does she have a breast care nurse? they are usually the best to talk to and you can ring them with any questions at any time- your mum should have been given her phone number.

Hope you can get some answers soon to put your mind at rest

Thank you fresta. I think my fear is that the tests that were ordered and the way the doctor suggested chemo first - plus some of the symptoms- seemed suggestive of ibc, but you're right of course. I guess I just wish the doctor had said what kind. She has been given a breast cancer nurse - also called Lucy, which she thinks is a good sign!- and seems very confident in her team. I think she just wants to hold off asking questions and just let this sink in first, and then will see when she's got a treatment plan. Whereas I guess I feel like I want to start preparing myself so I can think of the best ways to support her.

It is quite common to have chemo before surgery rather than afterwards. BreastCancer Care (which is quite useful) says:
"Surgery is usually the first treatment for breast cancer, although sometimes chemotherapy or hormone therapy is offered first. This is to begin treating the whole body or to shrink the cancer so that surgery may be less extensive."

If something clears up with antibiotics, that would suggest an infection, so I wouldn't be jumping to the conclusion of ibc just yet although I know it's hard not to fill in the gaps with all kinds of horrible stuff when you don't have all the information.

You are in the waiting bit, reeling with shock and not sure what the future holds. I expect your mum feels the same. All will become clear and hopefully not as bad as you're anticipating.

In the meanwhile, I think the breast cancer care website has details of a helpline which is staffed by nurses and open to family as well as people with bc. Maybe give them a call?

And keep posting.....hugs

Meaning inflammatory breast cancer by ibc...

Thanks so much both. I think trying to stay calm and not second guess the prognosis is probably the way forward: I'll try and think as positively as I can until I know further. The problem is trying to add together bits of information without the medical training or framework to properly understand.

In the meantime I think I'll focus on supporting in more practical ways as much as possible, but I may lurk on here a bit as it is really reassuring seeing how well all of you are doing. I know it's not at all easy but I think it helps knowing that however hard it is other people have travelled down the same path and are still able to keep going.

Hi All,

Well I've come to the conclusion that you should always take what the experts say with a pinch of salt. After Oncologist telling me that spots on breastbone is probably nothing, and they aren't overly concerned, and will just re scan in 3 months! I get a call today saying, that after discussing things at their MDT meeting, they think they need to do a full body CT scan to just check they aren't missing anything!!

Thanks, just what I needed I am so fed up with this. I know I should be grateful that they are keeping such a good eye, and I am. But the constant waiting for appointments and going to scans, and waiting for results is driving me loopy Especially when I am only a few months into a new job!

Okay moan over!! Onwards and upwards!! Love to all xx