**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!

I remember you mentioning the pain a few weeks ago. Sounds like you're seeing the ideal person, hope you get some answers and even better, some way of relieving it.

I'm still waiting....and it really is getting to me now. I think I might pluck up my courage and ring the secretary of the Dr who did the hysteroscopy tomorrow. It's more than 3 weeks now.

I've had a crap day at work and have just inadvertently insulted my dd. Think I might have a cry....

Thank you for that River I must have Xposted with you yesterday.

Good luck to those waiting for tests and results and hugs for those having and awaiting treatment. Also sending some to anyone supporting a loved through too.

Hi Everyone,

Got my surgery tomorrow, am still really scared about it.

Just wanted to say thanks to everyone for your support and good luck to everyone going through it at the moment.

I will let you know how I get on.

Oh marshy, you poor thing. Three weeks is beyond a joke when such scary things are at stake. Screw up your courage in the morning and ring, before another weekend is upon us. Actually, having a cry might be exactly what you need to relieve some tension. I had a cry over my dd the other night, I feel my mothering as been a bit rubbish at times over the last year.

I read something that said at times it will be as much as you can do to function at a basic level and you'll have no capacity to deal with other people's issues. Very occasionally those times still occur, usually briefly but don't be too hard on yourself. You're under stress again at the moment.

Sienna, we crossed posts. Wishing you well for tomorrow, hope you've got your friend in place to look after the family. The WLE isn't too bad you know, you will be a bit sore but not massively. Just take it as easy as you can, don't do anything that's not essential. Hope your son is doing ok with the A2s. Dd starts next week, it's a tough time.

Mrs that is spot on and just how I feel.

Sienna I'll be thinking of you tomorrow. They will take good care of you.

Another Herceptin injection tomorrow, I'm feeling slightly nauseous about it. Someone tell me to put my big girl's pants on and suck it up, please?

Just plucked up the courage to phone for my results. All normal. So relieved. I've been a mess today and still a bit wobbly but I'm at work and am going to pull it together to get through the afternoon then probably go home and have a good cry.

Thanks for all your support everyone xx

Brilliant news marshy, so pleased you called, you can enjoy the weekend now and come down off the ceiling. Awful that you've had to wait so long.

Shadow, how are you doing? You were obviously up late.

The sun has reached yorkshire at last so I'm making the most of it for a few hours.

Fantastic news, Marshy!

I'm fine now I've had the jab mrsrhod, but was sick this morning when I cleaned my teeth. I have a sensitive gag reflex though, I'm a nightmare at the dentist's! Enjoy the sun.

Sienna, hopefully you're back on the ward by now, I hope you aren't too uncomfortable. Don't let yourself get constipated on the pain killers (voice of bitter experience here).

Finally had my breast ultrasound this morning. I'm really not having much luck with the breast clinic at my hospital! The doctor I saw today was utterly useless. He spent a fair bit of time doing the scan but was so uncommunicative. The huge lump I felt was a collection of cysts which is great news. He didn't aspirate them though which is a bit frustrating.

More concerning is the conversation he had with the nurse whilst doing the scan. He mentioned a cluster of calcifications and "something" causing a shadow in a single quadrant that he wasn't sure about and got the nurse to come round and have a look. This was in a completely different area to the collection of cysts. He also found and saved an image of something in the armpit but didn't mention what it was. Then as soon as he'd finished scanning he just got up and walked out without so much as a goodbye. No chance to ask questions or anything!

The nurse briefly spoke to me afterwards to confirm that the lump was a cluster of cysts and said I was unlucky as the doctor I saw doesn't bother to aspirate them but the other doctor who was also running the clinic that day does so as a matter of routine. She also said "with your breasts specifically, if you notice any new changes come straight back to us". I do wonder what makes my breast so unique for her to say about my breasts specifically.

So I'm not really sure what to make of it all. Obviously very relieved to find out the lump was just cysts but feeling a little unsure about the calcifications and shadow. I think I'll give it a couple of weeks for the report to get back to my GP and make an appointment to discuss the other findings.

Good news Marshy and LtheWife (although hope you can get some more details L)

I had oral chemo too Carbe, capecitabine same as Lily and trice, but with another (IV) chemo for bowel cancer. So my experience is probably not that useful. One thing I would say is that it is still chemotherapy and so the side effects need to be taken just as seriously, like seeking medical advice with any of the symptoms you are told to watch out for. My consultant was really stern about this. (I'm not suggesting that you wouldn't take it seriously, but it is a real slog having to go to hospital with a temperature or similar so your mum might downplay things, lots of us have done it!) Personally I found the side effects from the oral chemo to be just as debilitating as the IV ones (I had a couple of cycles of tablets only as my first cycle didn't go that well), so unfortunately it may not be any easier than IV chemo, but others here have managed many months on the same oral chemo. I hope that isn't too negative, her drug may be entirely different :)

That was all a bit waffly!

Generally to anyone having chemo, writing that has reminded me that quite often the dose will be adjusted. Do not panic. That's not a problem at all. It's calculated very crudely and it's a balancing act between effectiveness and coping with side effects. I had eight cycles (that's quite normal for bowel cancer, breast cancer seems to be more variable between six and eight, and some people have a weekly version of one of the chemos that increases number of cycles but is equivalent to however many cycles of the three-weekly version, if that makes any sense ) and three of those I only had the oral chemo, then the IV one was reintroduced at 50% then 30% of the original dose. I don't think they normally reduce it quite that much, but my oncologist wasn't worried (and that's saying something, he is a real pessimist, just what you want in a doctor!). So if your dose is altered, that's really not anything to worry about :)

Anyway, I only popped on to say hi and have rambled on for ages so will leave it there! Good luck to everyone waiting for results or having treatment

Thank you Martha Mum would more than likely downplay things if I'm honest but luckily we live very close to our local hospital (not where mum goes to oncology though) so if anything did happen we have medical assistance close by.
I think we are just going to have to accept what mum wants regardless, obviously I will make sure that she knows what can happen with the oral chemo and that it could make her very ill/ limit her. I think that's all we can do. She won't get IV chemo, they've already told her that.
Bad day for her today, bless her. She had a panic attack this morning at the dentist and had to come to home and she says she's feeling a bit strange and very tired which could be for a number of reasons but hopefully it's 'just' an off day.

Great news to those who've had good news at the breast clinic - I was there myself last month after a scare but once I'd been scanned, mammogramed and biopsied I was given the all clear too. I kept telling myself that life really couldn't be so cruel right now and was gratefully correct.
I just have to keep an eye on my boobs too.

Hope all has gone well for you Sienna

Thought it was time to pop by and catch up with the thread again after a ridiculously long break. Sorry to see there are a number of new faces but hope that you are all coping with what's being thrown at you.

Sienna I hope surgery went well today and that you have an (in the words of the medics) uneventful recovery!

Great news marshy! I assume that means they won't be doing any more tests now?

Lthe, what a frustrating day. Are you having any follow up appointments or do you just have to go home and wait for a letter? I remember my very first ultrasound and the doctor didn't speak to me either, but then I saw her a few months later for another scan (to check how the chemo was working) and she was as chatty and friendly as ever. Maybe she had just been having a bad day first time round....

Boobz, I'm amazed at your ability to keep going with the exercise! It sounds like chemo is being kind to you so far so every day you can keep to your normal routine the better. I don't envy you all the travelling though and hope it doesn't start to take it's toll

Shadow, well done on getting through your latest herceptin jab. I went for my 11th one yesterday but didn't end up having it. I came out in such a big black bruise last time which I took a picture of that when the nurse saw the photo she immediately went off to chat with the dr. They've never seen a reaction like it before so want to switch to the infusion for the rest of my treatment. Of course they didn't have any of the drug prepared so I have to go back next week for it. I'm not upset about the date moving for a week as I was going to have to push it back when we go on holiday in August. What I'm less keen about is switching from a 5 min injection to a 1.5hr drip! And as it will be my first infusion they want to keep me in for 2 hours after for monitoring! It will be just like going back to having chemo again.

So I finished rads 3.5 weeks ago and apart from gently peeling skin now I seem to have survived ok. I had a lot of pains towards the end and a very sore nipple but otherwise it wasn't as bad as I feared. I did get extremely tired though so ended up not working for 7 weeks. I went back on Monday and whilst I don't have an official reduced hours return I have a new boss (hurray you say!) who is much more relaxed about what I'm doing. I'm seeing the radiotherapy consultant tomorrow but I assume it will be more a tick in the box exercise than anything.

The only thing that's bugging me now is that it feels as if I have a tiny plug of mucous in my chest that I'm quite conscious of on and off throughout the day. If I cough I usually cough something up (nothing nasty though) and I can feel things clear, only to start fogging up again.

I mentioned it to the GP back in April but she listened to my chest and said it was lovely and clear. It's not stopping me doing things but I can't decide if it's something I should mention to the team? I had it before rads started so can only put it down to chemo or herceptin (that is of course if either of them are to blame)

I'll have to do a big wave to everyone as I think it would take ages to catch up individually. Hope you're getting some sunshine to help brighten the spirits

Marshy that's great, hope you're having a big glass of something tonight :)

Lthewife glad to hear your good news though sorry things are not clear cut and that you have more waiting now

Sienna hope the surgery went well

Nanny hope the mammogram was ok and fingers crossed for the results

5 weeks till the summer holidays here and I'm not going back ! Have handed my notice in and am going to do supply teaching instead, school is very stressful and I had had enough. Think since having cancer I don't need the sleepless nights worrying about ofsted and levels. I will miss it though :(

Good for you malt. There is a lot to be said for being in charge of yourself and sleeping well at night. Public sector is a tough job (I'm nhs) and I'm amazed anyone is able to provide a half decent service given all the pressures, especially financial.

I have had prosecco and strawberries sitting in the garden. Dh got me flowers as well, bless him. We have been talking over plans for the next few months as we can now be sure that I won't be spending the summer recovering from a hysterectomy.

Enjoying the moment. I don't look too far ahead these days.

Love to all and I hope you are doing ok Sienna if you're reading

Oh and just to say that, now I'm not preoccupied with having womb surgery, I would still be up for a meet up if anyone wants to? I think we said London would be best.

So if you want to let me know what would suit, I'll coordinate it, with some help from the London contingent as I'm a midlander and have no idea where to go in the big city!

Either say here or pm me. If we agree a date for a minimum of 4 of us I think we should go for it. Maybe Sept? But open to suggestions.

Or we can just stick to the thread - whatever suits xx

Sunday 19th July would be very good for me!

That's good for me too. So we just need 2 more for it to be a party boobz!

Minty, I think I'd be talking to your oncologist. When was the last time you had an echo or MUGA scan?

malt sounds like you have made the perfect decision for you. Well done I imagine it wasn't an easy decision to make.

My appointment was okay. Other than the complete meltdown I had because the surgeon just wouldn't listen. Luckily BCN came to the rescue. Now awaiting mammogram results and chest X-ray results.

Marshy glad to hear you finally got the all clear. Well done on making the call, I'm sure it wasn't easy. Now you can relax for a bit, finally xx

Hi all, I hope you don't mind my posting here, another poster suggested this thread for answers :)

My mum died of ovarian cancer, but before she went she wrote letters to us to read after her death & in case she left anything unsaid I think. However when she wrote them the cancer had already spread to her brain and her thoughts & words were jumbled. In my letter & also my sister's she told us to get tested for a gene, possibly a gene connected to her ovarian cancer.

Not sure if its relevant but my father's sister has had breast cancer & my father has had skin cancer so there is cancer on both sides of my family. My mother's dad died from throat cancer.

I'm not too sure what she meant tbh, or what the different types of cancers mean.

But my mum was a teacher for over 40 years, she was one of the most well read women I've ever known & if she mentioned a genetic test then it was something that was on her mind & I'd like to know what she wanted me to do. She was not given to dramatics if you know what I mean, so if she mentioned it then she found it important.

is there anyone here that might know what she meant?

Many thanks

Hi midnightvelvet, I'm sorry for your loss

She probably meant BRCA1 and BRCA2, two gene mutations linked to breast and ovarian cancer. I don't know if there are any other genes linked to ovarian cancer.

Your GP might be able to advise on how to go about getting the tests. You may be able to get the tests on the NHS if your mum's team recommended that you need testing, depending on how likely they thought it would be. Otherwise the test might be available privately. You might be referred to a genetic counsellor who could talk through any links between the other types of cancer. I think they would mainly be interested in the family history on your mum's side as if she had several relatives who had ovarian or breast cancer, as that would be an indication of there being a genetic involvement, which could have been passed on to you and your sister.

I hope you and your sister get the all clear

Marshy - haven't had a chance to say congratulations on your news. I'm really pleased for you. You seemed to be following a similar path to me, but a few weeks ahead, and your thoughts are similar to me. Eg "not preoccupied with having womb surgery". Thank you for being there - it's been really helpful to share this experience.

, and for you

Midnight - I think also it is the breast cancer gene test. Two breast cancers are not to have a genetic link.