**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

Stormy, that's good about the scan date. I hope some more information and an action plan are helpful.

I've had a hair chop too, ready for first FEC today. Pretty nervous.

I hope you feel a bit better today, Anna, and each day before the next lot.

Anna, I had my chemo a few days before you and feel pretty much my normal self again now. What type are you having? I am having docetaxel first and although it didn't make me feel too nauseus, I felt like I had the worst dose of flu ever! Not looking forward to the next round! Also I am scheduled to have it on the 23rd December, so will feel my very worst on Christmas day (it was supposed to be christmas day but I guess they don't do it that day so they have brought that dose forward 2 days). Do you think they will negotiate with me to have it just after Christmas instead of just before?

I have just come back from my initial breast screening. I really thought they would tell me my lump was benign, but they didn't. I found my lump 2 weeks ago by accident, and went straight to my GP, thinking I was being a bit silly and should really have observed it for a while. I convinced myself I had fibrocystic breasts.

I don't know how big it is, but its not small, maybe 6-7 cm, and some of my lymph nodes are enlarged. They did a mammogram, an ultrasound and core needle biopsy of my lump and lymph nodes. They said that on balance of probability I have breast cancer, and should come back next week on Friday to get my results, and to bring someone with me. I thought they might not do the biopsy because I'm on warfarin. They did, I just bleed more than most people and have a large bruise.

I don't feel very coherent today. I'm scared of all the things that most people are scared of - children losing their mum, dh losing his wife, chemo, pain and not being brave. Sorry I'm not being more positive, I'm just in shock still. The nurse said that it will be treated and I need to get through this week and then they will put a plan in place. I just need to focus on them looking after me, but at the moment I'm finding the unknown hard.

Offering a virtual hand to hold, mysillydog. What a horrible shock for you. You're right, the unknown is so hard and this week of waiting will be tough. Friday will bring more knowledge and hopefully clear some of the fog of unknowing - do take someone with you if you can. In the meantime, this is a great place to bring your worries, questions and feeling - better posters than I will bring wise and kind words. Sending all support.

mysillydog another hand to hold here. For words of wisdom do have a look at what Amberlight posted a week or two ago on this thread. It is scarey, but the treatment is doable and there are many who have been on these threads, gone through treatment and have gone back to normal life afterwards.
In the meantime ask, moan or whatever you want. We have been where you are so know how you feel.

Mysillydog, sorry you're here but I promise this will get easier and the odds are very much in your favour. It's such a horrible shock though and it's natural to feel overwhelmed and terrified. As Lily said, do go back and read Amber's post.

Fresta, I m having 3 cycles of EC ( FEC without the F - not sure why no F or what it stands for? ) and that's every 3 weeks and then I was supposed to have 3 lots of Tax every 3 weeks but, as I'm not cold capping, they've decided I might be better having 9 weeks, every week of parotaxel (?) but a lower dose obvs, as there is a risk that my hair may not grow back otherwise.
I don't know why I've had EC when dveryone else seems to have FEC? I need to ask my onc. It's made me feel a lot worse than I expected but then I wasn't expecting it to be bad, based on conversations with my friend who went through this a couple of years ago. I think some of my symptoms; the hot flushes, headaches, insomnia are actually symptoms of the menopause as I was taking tamoxifen prior to starting chemo and I haven't had a period for a few months. The nausea has stopped now although I still can't stomach a cup of tea, very much like when I had morning sickness; no tea or coffee.

I think that if you explain that you don't want to feel really crap for Christmas then they could jiggle your dates around. I go for my third lot on New Years eve although at least that means I should be ok for Christmas.

On another note, I was flicking through the tv channels and saw the music video for that song I'd read about on here - "I wasn't expecting that" - I hadn't heard the song before but I found the song and video quite upsetting; it really annoys me when cancer is used like that.

Mysilldog, we all understand the shock you're feeling and the disbelief that it's happening to you. Breast cancer happens to other people doesn't it?
I fully expected to walk out with the all clear too. I would say they've been quite good to tell you their concerns and opinions, horrible as it is. Mine gave me no clues really so it came as a massive shock after a horrible week waiting for results

Everyone will say that knowing is a kind of relief because with it comes a plan of action. It usually kicks into place so quickly you barely have time to think. In the meantime we're here to chat to and much less scary than google which should be avoided, at least until you know exactly what sort of BC you may have. There lots of experience here, someone will have been there before and you won't have to spare our feelings like when you talk to friends and family sometimes.

Anna, I posted about that song last week, I purposefully haven't watched the video. It makes me very angry, I turn the radio off when it comes on. How people can go on about it being so beautiful I don't know. They can't have had any direct experience themselves, I think it's quite sick. My family know now go just flick the channel over if anything has a cancer storyline in it, for goodness sake, it's not entertaining... at all.

Sorry you have to be here *MySillyDog", but welcome and another hand to hold.

Anna, I am having similar to you in reverse, but 4 rounds of each, EC to follow Docetaxel (is this what you meant?) . I'm worrying about what you said about the hair now. I wasn't told about it not coming back with this combination and am not cold capping either. Will ask!

Hi everyone

MySillyDog - everyone else is right, the initial shock of finding out you have this horrible illness is horrendous. I only had my diagnosis last Friday and I felt like the world had dropped out from under my feet, I just felt total disbelief like I was dreaming at first.

Since Friday I have cried, screamed, ranted about the unfairness of it all and I've been on here a lot. Everyone here has been amazing and it's really helped me deal with my feelings and made this feel more normal somehow.

I hope your diagnosis brings some good news but in the meantime try and keep busy, it's much better to distract yourself than sit at home dwelling on the unknown.

Hi everyone and thanks for all your support. I was in total shock yesterday, but today I am trying to be more positive. Amberlight does indeed speak a lot of sense.

It's hard for dh. He lost his mother to BC and he is struggling with this. However, his mother's diagnosis was in the 1980's and I know that things have improved since then.

I'm going to a good hospital and I trust that their consultants will be fully up to date with the best treatments. I'm a bit complicated because I take warfarin for a mechanical heart valve and also have a pacemaker, so MRI scans are out for me. That is why I chose a larger further hospital than my local one. I hope I won't regret this decision with regular appointments. It only takes about 40 minutes to get to on public transport, but I don't know how able I will be to take this. I guess that is something to think about later.

I've emailed my tutor and program head at uni to let them know what is happening. I've also let my boss know at my part time job. I have a shedload of work to get through. This is supposed to be reading week, but I have been timetabled in every day apart from today. Although yesterday I skipped my session after going to the hospital because I was feeling too emotional. I need to focus on doing some work, I'm in my final year of optom, and a few days ago my worst problem was failing an exam this week. Maybe I should go in and try to hone my skills so I don't fail my resit and try to think forwards.

Hi Mysillydog, sad to learn that your team are thinking it's cancer. Assuming they are right, the wise people of this thread are right to say that the odds are very much in your favour these days. New treatment options are coming out almost faster than we can read them.

The important first thing is that lumps in the boob cannot kill people. Totally impossible. So if that's where they are, you're still firmly alive.
The lymph nodes under the arms are there as a 'safety net' to stop cancer cells getting anywhere else. If it's got into those, all that has happened is that the lymph nodes did their job. Still firmly alive.
If by some extreme rudeness, it's got somewhere else in the body, the team have upwards of 30 options available for nearly all sorts of more rudely behaved breast cancer now. They can convert it to 'long term nuisance' for most people.

To give an example, people who find it's got in their liver, and is a single lump there, still have an 80% chance of seeing old age. Loads of ways to zap it.
There are no guarantees. Breast cancer is not a fun thing to have. Treatments are eye-crossing things, but they are do-able. Especially with good support.

I think you are wise to go to a bigger more expert hospital. They can easily get the local one to do routine things for you - but the main specialists are good to have.
If you feel like letting us know results from tests, then we can give you the nifty new news on it. So will your team.

Meantime for you.

Hello mysillydog welcome and so sorry you are having to go theough this. The shock will eventually subside yes and as soon as you start the treatment plan that is suitable for your condiiton, you will start to feel like you are on the right path. It is never easy, but it can be done as many many women are testament to. You will need to make some adjustments to your routine, as it seems from what you mentioned about studies and work, but keeping busy is so helpful. I cn not stress that enough!
Best of luck and remember we are all here to support one another.

Evening all,
Quick hello from me. So happy it's Friday as I've been hobbling into work everyday with the dratted sciatica and looking forward to a break now. It is no worse which is progress considering how much I've been doing this week.
Thinking of those newly diagnosed or dealing with other tiresome and worrying treatment related distractions. Step by step......

My annoying side effect is that I need a blood transfusion (red blood cells) for the third time in a row during this chemo treatment. So another day down at the Oncology Unit beckons for Monday. It would explain why I was so tired in the evening this week.
At least it isn't Sciatica (continuing commiserations to Marshy). Think I will get DH to take me to see Brooklyn this weekend ... That's the film not the Beckham child! DH has enough on his plate at the moment as his DM is having frequent mini strokes and may well not last too much longer (she is 89 and has had dementia for 5 years so her quality of life has not been great, unfortunately).

Lily, sorry to hear you're having to go through another transfusion. You're such a trooper though, working full time and commuting; you put me to shame!
Fresta, yes it was 3 lots of Docetaxal that I was due to have initially after the EC. But when I told her I didn't intend to cold cap she said there was a small risk that my hair may grow back patchy or not at all and it might be better to the 9 week option called parotaxal(?) or something with tax in but a slightly different name.
As I'm an nhs patient, I'm always concerned that they're trying to fob me off with a cheaper option! Having said that I'm having the same treatment in terms of chemo as my neighbour had 3 years ago and she was also under the Christie but as a private client rather than nhs. The only difference between my and her treatment is the she has 3 lots of FEC rather that EC. She then had 9 lots of parataxol(?) weekly.
I wonder whether my rounds of EC are of a higher dose than yours as I'm only having 3 and you're having 4. It's all confusing. I'd like to know how they come up with the treatment plans.

Hello All, I wanted to introduce myself. I have been lurking for a week or so and decided to join the conversation so I hope you will have me . I am 37, two young kids, dx colon cancer in about June/July this year. Was quite a shock as it is for everyone I guess but the health system moved into gear quite quickly and I swiftly felt taken care of. I had 6 weeks chemo/radio and that finished end of september. Now waiting for surgery at the end of the month and that will be followed with 3 months chemo but that is all I really know at the moment. They have never told me a stage but i know it is T3N1, it wasn't a small one at 7cms ish but from my symptoms I think it has shrunk quite a bit from the treatment. Had an MRI recently but not heard results yet. In general I feel great! I felt so so rubbish before dx and the treatment actually made me feel so much better. The waiting for the next phase is hard though and I am getting increasingly more anxious about it and about getting ill again, and more so, now I feel so normal. And everyone keeps saying how amazing I look which makes me just feel like. Meh.

Dh lost his mum in january ostensibly to breast cancer but in reality she had ailing health for so many years i don't think you could blame any one thing. All the same it has made it hard for him. he was very involved in caring for his mum all these years with his siblings so he and his family are used to all pitching in to help out. We live in a small village and have a lot of support from all sides, I really think it makes all the difference.

So thats my story, look forward to joining the chat

Welcome lifeoverboard and sorry that you have to join the caravan, but seems you have been well taken cared of. I get what you say about worrying about not being well when you have been coping ao well, but it seems to me you are handling matters well and so as far as you have such loving and caring people around you, you will not feel helpless or alone. I assure you it does make a difference. I do not get a lot of support as I am not close to any family and friends, so I am coping with treatment for breast cancer pretty much on my own.
You were diagnosed around the same time as me, but I had surgery first and am now having chemo.
Hope all goes well and once again welcome to the thread.

Marshy, that sciatica is really being a nuisance! I recall the pain ever so well. Hope you manage to rest over the weekend.
Lily, I am so sorry you have to endure ye another transfusion, but howofully it will help make you feel less tired.
Hope the rest of you lovely ladies are having a good weekend.

Anna I don't think you get a poorer choice of chemo on the NHS. I think it is just the combo that your team thinks is best for you. If you get private treatment via an insurer, the restrictions the insurers have mean that there's very little difference in types of treatment available between NHS and private. Of course if you have £100 k spare to try the latest non-NICE approved drug that would be different, but you only get to that choice when all others have been tried.
From my experience, what you get by going privately is:

1. See the same consultant each time. Mine is the head of the Breast Unit at the NHS hospital and one of leading Oncs in UK - but if your local hospital wasn't a major cancer treatment centre you might not get such an illustrious consultant. On the other hand, you don't as a private patient, get the input of a team, which could restrict your treatment.
2. More likely to have a Portacath fitted - so no more "find a vein" fun! I rate Portacaths highly and am sure that the initial cost is soon outweighed by the saving in staff time! I've now had treatment/tests requiring the Portacath on a 3 weekly or more frequent basis over more than 2 years so it has more than paid for itself.
3. Probable easier to get an appointment to suit - but you still have to wait when you get there!
4. Nice lunch if you are there at lunch time and slightly better coffee! And I don't have to contend with either the multi-storey car park from hell and the overcrowded waiting area from hell that was the main initial reason that I went private initially!
5. On the other hand you don't get one dedicated BCN but the private unit is smaller with only 7 nurses (not sure I have ever seen a temp nurse there) so they all know me and they are all helpful.

Hello lifeoverboard, sorry you have to be here but welcome. I have two nieces around your age with the same thing. In their cases it's genetic. One is finished with her treatment and getting on with life, one is post surgery and I'm not sure what's next for her, but she's back at work for now.

Lily, I was interested to read your post about private v NHS care. We have BUPA cover but I didn't use it last year. Everything happened so quickly. I had surgery in my towns district hospital but had rads at the new cancer centre in Leeds. The teams from both hospitals sit on the multi disciplinary team and the oncologists come through from Leeds to take clinics.

I did discuss going private with one of the oncologists, admittedly not with the one who does private work, but he couldn't think of a reason to change what I was doing. I have always assumed, probably wrongly, that if I should ever exhaust all the treatment options then private care might allow me to try something not available on the NHS. I hope I never get to test this theory. One interesting thing though, as I didn't use my BUPA cover they paid out £100 for every day of treatment I had on the NHS, that being 1 day of surgery and 15 rounds of rads. After treatment finished I bought myself a little present.

Sorry to hear of the blood transfusion again. I too don't know how you manage that long commute as well as everything else you're coping with. I hope you feel better soon.

Happy weekend everyone else and thinking of all of you in the horrible waiting phase.

Hello everyone - welcome (in the nicest possible way) to newbies.

Just popping in again to say hi, and to wish everyone well. I can't believe it's been exactly 8 months since I found the lump. It has flown by.

I have BUPA and although I don't have NHS to compare it to, I have been really pleased with them. I have been able to schedule everything to my flight timetable coming back and forth from Rome, which I don't think I would have been able to do with the NHS.

I have my double mastectomy and recon next Thursday - am flying into London on Tuesday. My dad is coming to look after the kids whilst DH is with me in the UK. I have really no idea what to expect in terms of recovery - DH seems to think I will be home after a couple of nights in the hospital but I fear I might need longer.

My hair (I cold capped) is doing strange things - I think I lost about 40% of it, but that 40% is now growing back so I have 2 lengths of hair and it's not easy to style! I feel like shaving it all off and starting again!

Hope you DD is doing better now at uni Mrs - and has settled in a bit.

Hi all,

Good luck with your surgery Boobz

Sorry you need another transfusion Lily, I hope it helps

Welcome Lifeoverboard, I had bowel cancer too, almost exactly three years ago now :) I had surgery first then chemo, no radiotherapy, but mine was a little more advanced. It was T2N2, stage 3c. I don't know if you like to know things or not, so there's a good explanation of TNM staging for bowel cancer and the equivalent number stages from Cancer Research here, but please ignore it if you'd rather wait and speak to your team.

What surgery are you having? Don't worry if you don't want to say. I had a pan-proctocolectomy with ileoanal pouch anastomasis, I had a temporary ileostomy for about twelve weeks.

Anyway, good luck with your surgery I hope that you continue to have lots of support. I'm sorry about your DH's mum, that must be hard on him

I hope everyone is having a good Saturday

Hello Boobz wishing you all the best for Thursday and hoping you recover well and fast.
I met a lady who had cold valped and I was quite impressed although I know it was not for me as I have sinus headacahes and that would have made it worse. You may want to see a really goos stylsit for a clever strategy to include both old and new hair.
Mrs how lovely that you got to treat yourself during that time:)

Hi boobz, wishing you well for your surgery next week. I hope you recover quickly and can finally get home for good. You've been amazingly resilient.

Dd is home for the weekend, it's reading week. She seems to be much happier and actually well for the first time since she went away. I would say back to her normal jolly self, it's such a relief.