**Tamoxigang Thread 52** With virtual tea, cakes and chat for all with cancer concerns

[Lilymaid]

We were almost at our 1000 post limit for Thread 51 - hope the title is OK but wanted people to know that we aren't just about people on Tamoxifen but for all with cancer concerns!

wombcancersupportuk.weebly.com

Found this whilst googling the other day. Thought I'd post it as it may help someone. Compared to other cancers, womb cancer has got such a low profile.

Morning malt. Just having a flick through over breakfast. Dd2 now on A level study leave so no more school morning rushes again for me, leisurely breakfast.

Sienna, I hope your mum will at least be of practical help, if not emotional. My parents haven't visited me at all over the last 12 months. They phone and ask about treatment but never how I am. I met them three weeks ago for a few hours for the first time since diagnosis. They didn't ask then how I was either. I wasn't surprised but it still hurts. You have my sympathy.

I saw my gp last week about the hair loss I'm experiencing on tamoxifen. The blood tests results yesterday showed I don't have low iron, which has caused this problem before. Dr wants to speak to me later about some other ' borderline' results, whatever that means.

Marshy, are you expecting results soon?

Hope it goes well today river.

Mrs I'm expecting that surely results must be this week, by letter I think. It's 3 weeks today since I had the hysteroscopy..

River, will be thinking of you today, hope the result is the right one.

Marshy, that seems ages to wait, how are you feeling? Thank goodness I could call my bc nurse for mammogram results recently, the letter took nearly four weeks.

Hi Cailindea - you sound very similar to me. I was diagnosed with multi-focal (more than one tumour in one quarter of the breast), triple negative, grade 3, stage 2 BC in late March. I too am having a really heavy chemo regime - 4 rounds of EC every 3 weeks for 3 months, and then 12 weekly instalments of Taxol (paclitaxel) with Carboplatin every 3 weeks. I am also worried about how I will look without eyebrows and investigated the tattoo option, but in the end it was uber expensive and I too have discovered Baldly Beautiful on the web so have her tutorials at the ready for when the time comes! I am cold capping despite a lot of people saying I will probably lose my head hair from the weekly Tax regime... so far I haven't (am coming up to EC#3 next week) and still have eyebrows and eyelashes too (but lost all my armpit and nether-region hair!) I also went and got a haircut to help the cold capping and actually I think it suits me better than my normal bob length hair – DH said it took cancer to get me a decent stylish hair cut finally!

I watched a lot of YouTube videos before I started chemo as like you I wanted to be prepared. I couldn’t believe the difference when they did make up tutorials of the before and after (they looked really ill in the before!) so I decided at the grand age of 35 I would finally learn how to do make up (have only ever used lip gloss and a couple of strokes of mascara before) and went to Bobbi Brown and spent an hour in the chair with a lovely man called David who taught me how to do a natural day look. I took notes all the way through and I bought every single product he used: 18 of them in total (including brushes etc.,) and spent (whispers) £550. Which given I have never spent ANY money on make up in the last 20 years I don’t think was that bad! DH thought differently (but obviously I played the cancer card that day…) I’ve also watched the tutorials on how to tie headscarves – a friend bought me a lovely Fendi head scarf so I do have something at the ready… have opted not to get a wig just yet – am waiting to see if I can defy the chemo and keep my hair even during weekly Taxol.

Do you know what surgery you will be having at the end of chemo?

A friend of a friend is a registrar oncologist at KCL, and did her PHD on triple negative breast cancers – she sent me her final research paper which has been very interesting to read (although very scientific, obvs; I had to dredge up my science brain from university to get through it – let me know if you want to see it?) I have chatted to her all the way through my diagnosis and now having started the treatment too, via email, and plan to meet her when I fly in for EC#3 next week to ask more questions face to face – she has been an amazing sounding board so that I don’t have to Google and get out of date data etc. And believe it or not, she is married to a breast oncoplastic surgeon from the Marsden, so I will be able to grill him about my surgery options too! It’s just helpful to be able to chat to this couple, I think, in a way which you can’t do in a 30 min consultation with your official onc and surgeon (or at least that has been my experience so far). If I test positive for the BRCA mutation then I will put myself onto a clinical trial after surgery which uses PARP inhibitors which could help stop triple negative BC coming back if you don’t achieve a complete pathological response – again let me know if you’re interested in seeing the details of that.

Sorry, probably information overload – let me know if you’d rather PM as I am quickly becoming an expert in TNBC!

Marshy I hope you get your results soon – is does feel like a long time ago you had the test!

Mrs and Sienna - I am sorry your parents have been rubbish. Believe it or not both my parents (separated for 15 years) were diagnosed with cancer in the same week (bowel and prostate) about 5 years ago so they are quite empathetic (and fully recovered thank god).

Rivercam how did your scan go?

Speedy how was your weekend away? We just got back from camping. It was lovely as we went with some friends who have daughters the same age as ours, but the mum’s sister died of BC a couple of years ago so I think she found it hard sitting opposite me with my very obvious portacath staring at her as it brought back memories for her – she got quite weepy on the red wine on one night! Oh and thanks for asking about the genetic testing - it didn't happen as I managed to have crossed wires with my onc who referred me privately whereas I thought it was an NHS appointment so I didn't have the consult or test! Epic fail on my part - will now try to sort through NHS channels.

Hotchoc how was chemo? Still doing well? I am still managing to do daily Insanity / P90X on mine, so am so far avoiding the “chemo chub”. I am also still on the YBCN Facebook group, despite the cancer timeline overload it creates on my FB feed – it was where I found the link to the clinical trial so I don’t want to unsubscribe in case I miss really helpful posts like that. But it is still too much.

Hope everyone else is doing ok. Sorry for essay!

Hi all.
Rivercam, wishing you the very best for your scan.
Marshy hope your results come through, waiting is an absolute killer.

Shadowfax, thanks for the Anna bandana link. I really like the look of there stuff, and just ordered two scarves this morning.l let my dp decide the colours, my god what was I thinking. This cancer stuff must be really gone to my head.

Boobz, thanks so much for all the info, I'd love if you could send me the research you have. It dawned on me after my appointment with my onc, that I never asked him the name of the chemo I'm having. But I'll ask my bcn does she know. I so desperately do not ever want to get this disease again so any info I have that I can discuss with my team all the better. I normally am so organized and a bit anal really, with lists and questions, not at the moment. My normal ocdness has deserted me. Lol.
I still feel so numb,but in much better form than Saturday. I was so down and so angry.
Like you,wouldn't be into makeup on a daily basis before, but now its become so important, trying to hang on to my feminity, I suppose. Going to check out those tutorials as well. They don't do cold capping in my part of Ireland, and I've kind of resigned myself to losing my hair. I haven't looked into a wig, mainly because I just don't think its me. I think it would drive me nutty.
The hardest part of this bloody disease at the moment is watching my family trying to digest the news. My mother is in her 80's and my dad is dead. And my poor dp is reeling. But doing his best to be positive for me. I don't know what I'd do without them.

Have to run, collect my son from playschool. Be back in a bit.

Had a call from my gp who wanted to tell me my white blood cell count is low. I've never been consulted about my blood results before so have no idea what they have been previously. In fact it's not been tested since pre med last May. Don't know if this is a recent dip or its been like this for ages. I need a repeat test in two weeks. He did say tamoxifen could be responsible, I didn't press him on what the other causes could be...

Yet more testing and waiting, just as I thought I was clear now until check ups in September. Breast cancer....yet again the gift that keeps giving.

Hi boobz, nice to hear you're doing well still. My two daughters will be visiting Rome at the end of the month, their first solo holiday. I keep checking the weather forecast, it looks hot! They're a little upset that the Trevi Fountain is covered in scaffolding, first world problems!!

Cailindeas, I can't relate to your particular cancer but its really tough watching those close to you dealing with the shock.

Hi everyone, I don't have time to read through all the threads to see if I can find the answers I'm looking for, so I'm just going to jump right in if that's okay.
I'm looking for some advice and to better my understanding about oral chemo.
My mum was diagnosed with a brain tumour in Feb and later given the news it was terminal, a very aggressive form of rare brain cancer.
She's already had intensive radiotherapy. She has an appt with her oncology consultant next week where oral chemo may be mentioned as an option to prolong her life.
Now here's where it gets a bit strange - mum will NOT ask the questions that I have and I'm worried about because she is still in denial. Obviously she knows inside but we're not allowed to talk about 'later' or 'terminal' or anything relating to it. So what happens at appts is ; we will all go in, the consultant will speak without mentioning any of the above, mum will leave the room and my sister and I will stay and the Dr, with mums permission, will speak freely with us.
Basically the questions I have for anyone with experience of taking it are -
Is the oral chemo the same as the intravenous in terms of how mum will feel?
Will she be very ill from it and therefore limit her quality of life, she's quite well and mobile at the moment so this is a worry and obviously it won't cure her.

Is there anything else that we should to ask or think about?

Thank you.

Carbe, obviously I can't know which particular medicine your mum would be on , but I took oral chemo for six months. It was not without side effects but it wasn't too bad. I had sporadic stomach ache, nausea, diarrhoea and skin problems on my hands and feet. Not all the time and not as bad as when on intravenous chemo though.

I'm sorry to hear your family is going through this and I hope the appointment goes as well as can be expected.

Just letting you know that I am going to name change due to the nosy teenager in the house. I will be back , but under a cloak of anonymity Mwahahahahah!

Hope we recognise you trice :)

Thank you Trice (or whoever you are now :) ), that is helpful.
Mum has a few of those issues anyway at the moment, obviously everyone is different as are the different types of meds but in general that is good to know.

CarbeDiem I'm currently on oral chemotherapy called Capecitabine but I don't think it is used for brain tumours. Oral chemo is generally much gentler on the system than intravenous. Hope the link provides some help.
Mrs My Oncologist also mentioned my wbc count was slightly low. But I have had both intravenous and oral chemo which doesn't help and I had a cold/cough last time I had a blood test. They do like to leave you with something extra to worry about, don't they!

Hi all.

Will be watching out for your name change Trice .

Boobz- a lovely weekend thank you. Glad you are doing reasonably well with the chemo and am impressed that you are exercising! Felt relatively normal over the weekend away and didn't think about cancer once for a change. Had oncologist today though! Heart function is ok so all go for next two herceptin which will take me to 8. Interesting info about triple negative. I may pm you at some point.

Mrs- sorry to hear your count is down. Just such a pain to be waiting on more tests!

Hi Carbe. Sorry I don't know anything about oral chemo but my mum didn't want to talk about her illness very much and wouldn't use words like palliative. At least you can go in and ask questions but it must be hard for you all.

I have to go and feed children so sorry for not commenting on everything. Thinking of all those in the middle of treatment and those waiting to start.

Hi,
Thanks for everyone's best wishes.

I was fine drinking water until the person before me was called in. Then I started to need the toilet... . All the other women waiting were pregnant ladies ( all wearing stripey top). They probably looked at me and thought I was a middle-aged mother!

Then I saw the consultant, who was very easy to the eye...he asked various questions, and then did a hysteroscopy. That was uncomfortable, at times, and made me feel shakey afterwards. The results will take three weeks. He said that if the cells prove to be abnormal, then I may need a hysterectomy, which is done keyhole now. I can't take the hormone medicine, due to the breast cancer type I had.

Aren't visits to the hospital draining? I feel tired this evening.

Forgot to mention the cake I treated myself for lunch. It was delicious!

Boob- your make-up session sounded fun. I look at people and always think their make-up looks lovely, when mine is a bit slapdash.

Carbe - sorry to hear about you mum. However, you sound like you have a sensible approach with asking questions. Sorry, I can't help you with your questions. My sister had chemo for breast cancer ( not sure what sort), on a three week cycle. She felt rough for two weeks, and then would be fine for a week. As her immune system was down, she had to avoid crowds etc. I remember reading a comment at the time about chemo that it's not easy, buts it do-able.d

Trice - have you re-surfaced yet?

Big hello to everyone not mentioned

Thanks Lily I'll have a look at the link.

Yes Speedy it is difficult but we just have to respect how mum is dealing with it at the moment. We were at an information day type meeting the other day for people with brain tumours/cancer and as soon as a lady was due to talk about hospices and palliative care - mum had her coat on and was ready to leave. She just said that she wasn't ready to listen to any of that yet, so off we went. It is good that we can speak to the Dr's and we have a specialist oncology nurse we can contact at any time. We obviously just don't tell mum exactly what has been said.

Glad you treated yourself to cake River. Hope you get results quickly.

Malt- have been reading back through properly. Am glad I am not the only one who has the middle of the night terror. Cried again at oncologist when she asked how I was doing which seems so silly after all the main treatment has finished. Do people find the feelings subside a little as time goes on?

Speedy - I think that afterwards, it can hit you what you have been through. You have time to reflect on everything that has happened.

During the treatment process, even though it can be difficult, you get absorbed with the appointments, treatments etc, and somehow all this action can be comforting.

I guess the tears are a post-traumatic stress reaction.

Maybe go to the zoo and see some real penguins. Penguins are good for cheering up the soul.

Hello to all

Mrshodgilbert has kindly suggested that I seek some advice from this thread.

I have posted a different thread as I have been referred to the breast clinic by my gp and am feeling pretty anxious.

I hope you won't mind me posting here? I just don't know quite what to expect and I also lost my mother to breast cancer when I was just six so my perspective is a little skewed.

I'm sure anyone in this boat goes through a variety of emotions.
One minute I feel fine and the next I'm imagining the worst.

I am 33 and have two children. A son 3 and a daughter approaching her first birthday. I'm still breastfeeding and have had recurrent mastitis and the gp commented on some thickening. I just assumed this was an inflamed duct from all the mastitis. I'm a bit embarrassed and worried I didn't recognise this as something to get checked. I guess I thought I'd be laughed out of the doctors.
To me it feels like a duct and not at all what I imagined the 'thickening ' description to mean when you read all of the signs to watch out for.

At the moment I'm on antibiotics again but this time for four underarm lumps. These are quite painful and the gp thinks they are more glandular but I think they are boils. I've had those before in the past a long time ago.

If I'm honest my body has been feeling different for a while but I think the second pregnancy and looking after two children has done that.

I'm due to return to work in 3 weeks and currently settling my daughter into a nursery I'm not happy with (long story) so a little emotional anyway.

I hope I can distract myself and survive the clinic ok. I'm trying to arrange a friend to go with me and my husband to have the children. I read a leaflet which says you can be there a few hours so it seems wise to have the kids planned for.

Hopefully it will all be a storm in a teacup and an over cautious gp but her whole body language changed when she was examining me and its a shock when I went about my underarm and not my breast.

Hi again, I'm not stalking you honestly. DH is away tonight so I'm at a loose end. Definitely take someone to the clinic with you, it can take a while and it's difficult to take everything in. An extra pair of ears is very handy. Plus stay away from google, it's largely out of date. If you actually want to speak to someone whilst you are waiting I can recommend the helpline at Breast Cancer Care, the nurses who man it are very kind. But keep remembering, you're most likely to be ok. Hope you get some sleep tonight.

River, glad to hear you got through the procedure. Not sure an easy on the eye consultant would be a good thing in that situation. That cake looks more like a lovely big pile of chocolate!!

Speedy, sorry you've been feeling wobbly. It does hit at times still. However on Sunday DH and I had a lovely day in York and I realised afterwards that I hadn't thought about cancer all day, that's a first. More blood tests have put an end to that again though.

Night all.

Hello again and goodnight.

You've been so kind and it has cheered me up. I've read w little of the thread and you are all such lovely people. You really have shown me that the prognosis is getting treatment and coping and moving forward. Things of course are different now compared to almost 30 years ago when my Mum was treated.
Do you know that realisation is something that will benefit me for a long time to come.

I'm sure you're right and I am ok. I guess I'm lucky we have such good services here to check though.

I hope everyone has a smooth time tomorrow. Hopefully less rain and more sunshine or cake if not.

I hqd better get some sleep as my son has recently decided he wears pants in bed now, so I'm sure to get that 5am wake for a wee and a high five if he's dry. My daughter then usually wakes for her feed.

The glamour of maternity leave.

Hi to all new and old.

Marshy I hope you get some results soon! We all know what a nightmare waiting for results can be.

I am having a weird day, feeling anxious about tomorrow. I have an appointment with the surgeon and my 2nd Mammogram post diagnosis! Now I know that things will probably be fine, and that I shouldn't worry!! But then we all know that telling yourself not to worry, and actually not worrying are two entirely different things.

I think I have become slightly more stressed because my breast is already feeling really sore, so the thought of having the mammogram, isn't filling me with excitement. Also my breast has changed so much over the last 6 months, I genuinely don't know what 'normal' is anymore!

Anyway hopefully by this time tomorrow it'll all be over! Then I suppose I just wait for the results.

Sending love and best wishes to all going through treatment at the moment. Xx

Hi nanny, sounds like you are still having lots of pain, is that why you're seeing the surgeon tomorrow too? I was really anxious about my first mammogram but it wasn't so bad at all, but then I didn't have excessive pain already. Hope you get some answers.

Morning indiarose, I hope you managed some sleep last night. Things have moved on hugely in the last thirty years, keep remembering that. It may be worth asking about genetic testing at the clinic with your family history, particularly if any more relatives have been affected.

Hi Mrs I'm not sure why I'm seeing the surgeon tomorrow, although glad I am. Just the way my hospital does things?? I've had really bad pain for over a month! But can't help thinking that's Lymphoedema related! Or possibly hormone related, as my periods have sort of returned! But I will be glad to get checked out, and get some questions answered. Hope you are doing okay xx