**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

Oh bloody hell nanny. Moan away. Of course they're doing the right thing but it does terrible things to your mind, I know. You hardly seem to have had a month without some appt or other for as long as I've known you on here. I think we're all a bit loopy by now.

I've never been scanned anywhere but my breast and armpit and sometimes wonder how they know a little bit hasn't sneaked out into the rest of my body? Not helpful to dwell on those thoughts of course, but they crop up sometimes.

We had a lovely weekend in Edinburgh, it was absolutely freezing but with clear blue sky. Too much food and drink and many miles walked, I was exhausted on Monday. Not sure if it's age catching up with me but these city breaks are very tiring. I was hoping to come back full of festive spirit but not so. I've bought 3 presents and am in total denial. This time last year I was all done and wrapped, I think that was post treatment euphoria. Everyone I know has everything they want and need, I'm completely out of inspiration and desire to spend money. Bah humbug. How's everyone else doing?

Oh nanny, that is such an upsetting thing to have to endure! Technically yes it is great to have these checks, but we are humans! I would feel just as frusrated and fed up. Let us hope once they have done all their imaging that your waiting serves a good purpose and the news is good.
Somsorry you have to put up with this.

Nanny Sorry you are having to go through further scanxiety. Do have ad lib!

Hope your CT scan is organised and over with in the shortest time possible nanny

I had my mri this morning- My hands went completely numb half way through and I thought it would never end, but didn't want to risk moving them. At least it was very early- 8.30am, it was such a rush to get organised and drive to the hospital for that time and fit in the school run as well, but at least it left the rest of the day free. I am rewarding myself with a Tunnocks Caramel Wafer, I'll share them out if you like!

Thank you so much for all the kind words. I needed them today. I wasn't expecting this, and so it really has hit me hard! I just hope the scan is soon and the results come quickly! Maybe I'll get a great early Christmas present...the 'all clear'! Either way I just want it over and done with!

fresta well done on getting through your MRI, and I would love a choc wafer, thanks

mrs glad you had a good time.

Hello everybody
mrs glad you enjoyed your getaway.dont wirry biut the season spirit. As long as you have your family to soend it with, that is all that matters.
fresta sharing is caring:) would love one of them wafers:)
I am half way through my final chemo dose. I should be done the first week of 2016. i tend to take each day as it comes, but cant help counting the weeks till this chemo is over with.
I keep having trouble with my affected breast even after four months since the surgery. I get fluid build up in it and it becomes red and swollen but no temperature. I have been told it does happen and that as long as there is no infection it is ok, but it is so annoying. I think it is sort of like lymphedema but in the breast? I have heavy breasts and I read that is one factor for fluid build up post lumpectomy.
Oh well, if it isn't one thing it is the other!it could've been worse I keep telling myself.
Hoping all those awaiting results get the good news they are hoping for.

royal, I think it takes the body quite a while to settle down after surgery, it's over 5 weeks since my sentinel biopsy and it is still a little tender and slightly swollen and that was only a minor op. The chemo might also cause healing to be slower and cause fluid retention. Well done on getting through it all, it will be a real milestone to reach the end of it. I will be half way through at Christmas, finished Docetaxel and then onto the EC in the new year.

Can't wait to get back to work, was so bored I cleaned out all the kitchen cupboards today!

Spoke to BCN today. Scan is booked in for Wednesday. Although not sure when I will get the results, as I have no appointment with Oncologist booked, until January! I did ask if she thought she would be able to give results over the phone, and was told we'll just wait and see what happens?!!

Well done on getting half way royal Chemo will be over before you know it

I've read the whole thread and it has helped me feel so much better. I was diagnosed with breast cancer one week ago. I am still feeling overwhelmed and in shock, I am only 39. Booked in to have lumpectomy next Tuesday and I am really worried about which grade and stage the cancer will end up being. All I know is the tumour is small, just 1cm and the ultrasound hasn't picked up any spread to the lymph nodes. I know it is not that accurate at picking it up though, so I am still worried. I want to be here for my daughters who are just 6 and 7. I am so worried.

Hi Summersun but sorry you've had to join us.

I'm not the most helpful person as had bowel cancer and don't have children etc. but there are others in their thirties and/or with similar age children who will have a better idea of what you're going through :)

Lots of people find this early waiting period the worst, it is easier once you have a plan. A small lump and no evidence of spread sounds like tentatively good news :) but hopefully you'll feel a little better when you have more concrete answers.

Anyway, welcome and do feel free to ask anything or just to shout/cry/laugh, whatever you need!

Hi summer. I had a small lump removed in May of last year, it was 11mm. I understand you must be feeling horribly shocked right now and until you get the final post surgery results you will be very scared, that's perfectly normal.

But your lump is small and hopefully very treatable. There are many different sorts of breast cancer, let's hope you have a simple sort. Have they mentioned a sentinel node biopsy to check your lymph nodes are absolutely clear?

Until you know exactly what you have it's impossible to offer detailed advice but to offer an idea of what you might get this is what I had.

Lump removal and sentinel node removal in May last year, about six weeks of recovery then 15 sessions of radiotherapy. It was all over in less than three months. I take a daily hormone therapy drug called tamoxifen and I will be checked regularly for five years. There are still various niggles but essentially I've been back to normal for over twelve months. Fingers crossed it won't come back. I got off lightly but plenty here go through the whole range of treatments and everyone has come through. Ask anything you like, stay away from Google, use your breast care nurse if you have one and get your friends and family lined up to help out over the next few weeks.

Hello summersun I am glad you found the thread encouraging and I truly hope your experience is made easier by the fact your tumour is so small. Hopefully it will be in it the early stages and you will be treated accordingly. We support each other here with info and advice nd just by listening and understanding! Wishing you the best.
Nanny and fresta thank you. I still have the rads following the chemo but hey they cant be as bad!
Hope you all have a great day ahead.

Hi all. Sending love for those waiting for test results.
Just had my annual mammogram. Fifth year. All OK. Surgeon watching a patch of skin which may be showing late effects from radiotherapy, but definitely still alive.

Summersunandflowers, welcome from me too. I'm one of the Oldies (in most senses of the word...) and read almost all the oncology/medical reports on breast cancer. Not a doc, but five years of reading has taught me a fair amount. You may be pleased to know that even if it was in your lymph nodes, the odds of you copping it any time soon are very very small. They did the research for loads of cases like yours. Only 4% failed to live for at least five years. Those 4% were almost all people who were already very elderly, very unwell, or had teams who didn't use the right stuff. And that was on the old data, using old potions and without the modern superdrugs.
I'm sure your team will help to reassure you too. Treatment is not fun. But it is do-able, and once you have all the info, it's easier to settle down and live the 'new normal' life.
Hoping all goes smoothly for you. Keep chatting to the splendid people on here. So much knowledge between them.

Congratulations on reaching the five year mark Amber, bit of a milestone. Apart from your possible rads complication have you been discharged now? I can't imagine what it feels like to suddenly be let loose, despite hating all the hospital appt with a passion.

I hope you'll continue to post and reassure us all, old and new.

Thank you for all of the reassurances. Feeling very up and down. Amber, thanks for the info sounds more positive and great news that 5 years of mammograms have been clear xx

Hello again. My sister in law just called to tell me she was told she has got thyroid cancer. After a very frustrating couple of months of delays and a repeated biopsy the doctor broke the news to her today. I felt so bad for her only because she had been left to wait so long to know for sure. She had seen her GP about three montsh ago about the lump she found in her neck and it has taken all this time to have to find out. She is understandably distraught although she was told the prognosis for thyroid cancer is actually really good, but it is the build up of three months that has finally had its toll on her. Poor thing. I feel guilty sort of cause I did not have to wait so long:(
Sorry ladies but just feeling so upset for her.

Mrshodgilbert, nope. With the very rude HER2+ ER- sort I had, it's still vaguely likely to nip back in years 6 and 7... so my team are continuing to see me every six months. But the five year point seems like a good one.

Royal, yes, not good news for your sister in law. What sort of thyroid cancer is it - do they know as yet? (If you wish to say). Some types now have a very good prognosis because of new treatments...so hoping hers is one of the ones that does.

Hi Amber, she hasnt told me much as she was quite upset. They are now rushing things with an MRI and possibly suregry all to be scheduled in the coming week. I just read some types have better prognoses than others yes. I truly hope for her sake that first it hasn't spread and second that it is one of the more treatable ones.

Amber...so pleased to hear your good news.

Welcome summersun....fingers firmly crossed that all is straightforward for you, and for your sil royalmama.

Hope you are ok nanny...

Fresta...you really need to resist those house cleaning urges

Wishing everyone a good weekend.

Hello, I posted last night on the Pre-Teen and a couple of kind members pointed me in the direction of this thread where they said other's might have gone through the same or similar scenario:

Earlier this week I was diagnosed with oesophageal cancer but neither my DW or myself are sure how to deal with DS age 9.
We have obviously had to tell a few people including immediate family but haven't yet told our son.

While the diagnosis is confirmed, I need a PET scan before a treatment plan can be put in place, this should be sorted in the next two weeks. The current plan is to wait for the results of this scan which will confirm how advanced it is and what can be done, before we tell him.

Do you think this is the right thing to do? My only worry is that he accidentally finds out by over hearing a conversation or similar.
Also has anyone got any advice on how to break it to him?
So not to drip feed, it was also my DF's funeral yesterday so he's still coping with loosing his Granddad in the last week or so, a rough week is an understatement.
Thanks

Hi pizza
Sorry to hear your news - rough week hardly covers it.

I'm not sure I have much advice of any use to you but didn't want to read and run. My dc were late teens when I was going through diagnosis. My dm had died just a few months earlier so it was a tough time for us all.

My strategy was to tell them only what I knew, or was 99% sure of, and to keep the ifs buts and maybes to myself, or for discussions with dh. I needed a bit of time to get my thoughts together too. That wasn't too difficult as dd had just left for uni and ds spent a lot of time in his bedroom as is the way with teen boys!

Have you got any support for yourself, a specialist nurse or anyone to talk things over with?

I'm sure others with younger dc will be along soon to offer something helpful.

Best wishes to you all

Hello pizzapower firstly, I am so sorry for your loss and that you are going through a tough time. I hope you have enough support to help you through it.
I am being treated for breast cancer and have two DS, one of whom is soon to be ten. I will tell you my experince and then you can see what is best for you. We had planned to go on an exciting summer holiday last July when I was diagnosed, so we had to explain to the DC why we were suddenly not going anymore. We told them mummy has a bad lump that needs to be taken out so it does not make the rest of my body very ill. They were disappointed of course, but the fact we sat them down and told them in as simple terms as possible did help and they realised mummy was more important and that we could go on that trip once mummy was better. Then when we realised I would need chemotharapy and so we had to explain that mummy needed some medicine to be taken at hospital to make sure that lump did not come back. We explained the medicine would probably make mummy tired and could we all help? We have never mentioned the word cncer for fear if they mentioned it at school they would be told something shocking or frightening. When I started covering my head because I had lost my hair, DS1 who is almost ten as I said, asked once if I was covering my head because I did not have any hair now ? and I chose not to lie and said yes. He said that was ok, but that he did not want to see me without hair and I promised him i would do my best so he would not. They are doing fine and they know what to expect on chemo day. Kids are so much more resilient than we think. As long as you do give them some time and make the effort to explain things in a way that suits them, they can handle it.
Best of luck

Welcome PizzaPower, but sorry you've had to join us.

I don't have children so can't really add anything :) I do think honesty is generally the best policy, in an age-appropriate way.

My aunt had oesophageal cancer when I was about your son's age. She's now over ten years on, and doing well. Another poster on here has also had it so she may appear soon :)

Good luck for your scan, and I'm really sorry for your loss

Hi PizzaPower , I have a dd age 10. At first we only told her that I had a lump in my breast and that I would need an operation to take it out. Then when it became apparent I would need chemo we explained that to her and that it would make my hair fall out. She already knew that this meant I had cancer as children see a lot on television and chat at school so we did tell her it was cancer as we didn't want the someone else, maybe kids at school, to be the first to say this word to her. She was very upset at first, mainly about the prospect of hairloss, but when it actually happened she coped fine, and doesn't mind seeing my balding head now. I think simple straightforwrd honesty is best, although spare them them your worries.