All the fives... Tamoxigang cancer support thread 55

[WhatWouldLeslieKnopeDo]

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

Hi all.
pepper thanks for your thoughts. I think my meeting was fairly positive overall. The brain tumour is a grade 2 tumour. The consultant wants to remove it as soon as is safe. He therefore wants to wait until the baby is born, give me a bit of recovery time, and attempt to to remove the whole thing in the new year. He seems confident that he can and I won't need any other treatment (chemo or radiotherapy) at this stage. The bad news is that this WILL return at some stage, and it will be worse (grade 3+). The prognosis is unlikely to be so positive next time. But we'll deal with that when it happens, and I'll be monitored so it won't be allowed to develop much before treatment. So at least I can now get on with 2016 without thinking about it too much as long as it doesn't change over the next 3 months. Fingers crossed!

Sleepy I'm sorry you have been so unwell and that the chemo has bad side effects.
LittleGrey I'm glad your consultant is working around your pregnancy and that this tumour is manageable, but it is quite a blow to be told that it will recur. I hope that you and your dh are coping well.
The nurse was happy to do my treatment yesterday. The cut off is 37.5 and I was 37.3. Only 2 more weeks and I'm done.

Hello everyone. Sorry I haven't been around; I've been trying to focus on being at work. Also, although stronger physically I've been struggling a bit with mood and I don't want to be here and moaning when others are going through so much more. I've reluctantly started on ADs but not felt much of a lift yet. The afternoon fatigue is a bother - is that normal, even 5 weeks post end of treatment?

Anyway, please know that I think of everyone here every day, am following the thread and sending support.

Not long to go now, mysillydog - what a roller coaster you've had through chemo. Hope the last couple go smoothly.

Very sorry to hear about the infection, sleepy, and hope today's an easygoing one for you.

LittleGrey, I'm glad you've got some information and can plan a little, even though it's a lot to handle. I hope you have plenty of support and comfort and treats through the pregnancy.

All my best thoughts to everybody and sorry again for being a bit useless - I haven't even congratulated Rust! Congratulations! Hope you and MiniRust are having snuggles aplenty.

Just off to the hospital. At least the waiting will be over.

Chewing, I truly hope your appointment goes as well as possible.
Dinster, the fatugue does linger for a while, so just take it easy.
Mysillydog, so pelased for you to be closer to the end of your treatment! Think of how you would like to celebrate.
Sleepy, so sorry you have had some tough times. I hope there are better and easier times to come for you.
Littlegreycat, your news seems good actually despite what you said about the cancer possibly coming back.you see nobody can be sure of that and so just think fo your lovely baby to come soon and take good care of you two! Your surgeon seems to know what he is doing and I hope he manages to ge it all out and tha you get to enjoy your new baby.
I am sorry if I have missed anybody else. For those waiting for resukts I hope your wait is not long and you are reassured in wvery possible way.
I am having physiotherapy for an achy hip joint which my doctor says has nothing to do with the cancer ( i hope he is right!) so far my physio has been helping a lot. The joint is quite stiff and tense unlike the other leg. The x ray my doctor asked for showed no abnormality in the bones. I wanted to get active and fit but i sprained my ankle at about that time and so am now unable to do much exercise :( i am doing well with the Tamoxifen so far, bu my weight gain is bothering me as I never ever was overweight in my life.. oh and sometimes I even manage to forget I have cancer, only to feel sort of panicky! I tell myself I must not forget as I do not want to resume normal life only to then find out sonething is wrong again. It is like a struggle betwen wanting to let go on one hand and fear of letting go.
Anyways....
Take care all.

Well it didn't go as well as I'd hoped. First of all a needle was put in to see if it was a cyst which it wasn't . Then I had the mammogram and ultrasound which showed a further 2 lumps which the consultant couldn't feel as well as some calcification. I have to wait now to have several biopsies with x ray staff which should be in about a week. The consultant would not say what he thinks it is at the moment as I am currently signed off with anxiety and he didn't want to add to that

Royal I hope your hip feels better soon.

Chewing, I'm sorry you're going to have to wait longer. You seem to have been unfortunate so far and still no conclusions. My lump couldn't be felt, it only showed up in the mammogram and scan. I don't suppose he has helped you anxiety by remaining silent either.

Royal, I'm glad you're sounding more positive, I sometimes forget too and think I'm normal. I think I've put on some weight with the tamoxifen and I'm back at the gym trying to shed a bit, seems to be working slowly. I've been suffering from a sore shoulder since before Christmas and am reluctant to go to the dr with more problems. It's muscular so I'm not too worried.

Sleepy, I hope you're over the infection and feeling a bit better.

Mysilly, you're almost there, I assume that's one more treatment? Anything else after that or is life your own again?

Dinster, be kind to yourself. It takes a long time for the mind to begin to recover.

Littlegrey, sounds like fairly positive news and I hope you can relax a bit and enjoy the rest of your pregnancy.

I went for my second hysteroscopy yesterday to see if they can find the cause of these bleeds I'm having. I feel more hopeful this time, as the gynae MTD will discuss me and also pass results on to oncology who may wish to review the tamoxifen. Back to more waiting now.

Did anyone watch the cancer programme on tv last night? I've recorded it and might have a look when I'm home alone some time, I know DH won't want to see it.

Thanks chewing and mrs. Chewing, more waiting is torturous no doubt but if the tumours are not palpable i am hoping that is a good sign that they are too small. I hope those biopsies happen soon!

Mrs, it is strange how i seem to have returned to "life" but actually have to yank myself away from totally forgetting wha i have been through and that is never really over!
I hope they do find the cause of your bleeding and manage it. May I ask if they think it is definitely due to the tamoxifen and may I also ask you when it all started?
I am dying to exercise but need to take it slow now. I tried on some of my smart clothes a few fys agi nd they were too tight..that frustrated me a lot, but then i tell myself i should be grateful and not moan about my weight although it is not helpful it is not due to food. I have over the lat few months cut out on sugar and am now taking the least amount possible, looking to totally eliminate all refined sugars to the best of my ability! I feel sort of in control nd strong for having been able to do this much. Sad in a way:(

Love to sleepy hope you continue to recover that sounds nasty

Mrs Rhod hope you get the results soon

Chewing sorry you have more waiting

Hi royal, I started tamoxifen in July 2014 and my periods stopped immediately. I had a major bleed in March 2015 and was sent for a pelvic scan. After the second bleed in September 2015 I had a scan and hysteroscopy. They called it tamoxifen related uterine thickening which released as a massive bleed. Final bleed three weeks ago with scan last week and hysteroscopy yesterday. The million dollar question is now what's causing it. Certainly the uterine thickening is down to the tamoxifen, there is a type which Is 'OK' to have and a type that leads to uterine cancer. I had the OK type last time. I'm hoping gynae and oncology now come to a conclusion. It is possible that it's my body not being quite ready for the menopause yet and managing to have some final periods. I don't know how they will actually decide but that's their job I guess. It's not a common SE but obviously a known one. Apparently tamoxifen blocks oestrogen in breast tissue but it has the opposite effect on the uterus.

Hello all. My iPad is struggling so I will keep it short

Sleepy I hope you recover quickly from the infection. Bleurgh to the capecitabine. I hope it does its job with minimal side effects. I found Lotus biscuits were quite good for the nausea! I hope they've given you plenty of anti-sickness medications.

Fly sorry you're struggling. I hope you get a definite answer soon!

chewing sorry you don't have an answer yet. Fingers crossed for you

Littlegrey what mixed news. You must be feeling so many emotions right now! A relief that you can continue with the pregnancy and that the surgeon is confident about dealing with the tumour for now. Not good about it returning though brain tumours are particularly nasty little fuckers. I hope yours stays away for many years. And I hope that new treatments are available by the time they are needed. You may just want to try and get back to "normal" and focus on your pregnancy now, but please do feel free to come and post here whenever you need to in the coming months. I hope the rest of your pregnancy goes smoothly

Mysillydog sorry the chemo is taking its toll. I hope you manage to kick the cold soon! Good you've ticked another one off though. Two more and the your body can finally have a rest

Waving to everyone

Hope you are all doing ok
The x ray department called earlier and I am having the biopsies first thing on Tuesday so at least things seem to be moving a bit quicker now.

Waving to all. Returned from a much needed holiday.

Littlegreycat, sorry to hear your news about the brain tumour. What did the consultant think about you having been in hospital for ages after all those sudden fits, and your difficulty speaking? They are intending not to do anything until next year? Did the team talk to you about options around that?

General news: The big ASCO cancer specialist's conference is starting up. Tons of new papers about newer treatments and trials for cancer. Now's the time when teams will look to see what the latest recommendations and options are. If you want a very geeky science link, meetinglibrary.asco.org/subcategories/2016%20ASCO%20Annual%20Meeting will take you to the technical abstracts. Warning of results and statistics in there, though; and if you're not a researcher/geek/scientist, it's easy to find frightening-looking ones. They probably aren't - but they need a bit of interpreting.

Summary: We are getting even closer to a full set of answers. Good.

Hi to all and wave to Chewingawasp , glad that things are finally moving along for you as waiting is tough going.
I am just back from my breast clinic, it didn't go as well as I hoped
I first saw the lead consultant who said he wanted me to have mammo, ultrasound and needle biopsy .
The mammo showed up a "solid mass" where I can feel lump so the main radiologist did the US and needle biopsy, I am bit sore but so upset at the "solid" words.
The US was just on the lump and the breast care nurses were so nice that I felt like crying . They said they would phone me on Thurs with pathology result , and advised me to keep Friday free in case consultant wants me back .
Just about holding it together as one DS has his exams next week .
Really want to just wake up from this it's like a bad dream.
Sorry for rant and hugs to everyone else having bad day x

Hugs Celendine and don't apologise for ranting, I totally know how you feel . Sorry your appointment did not go as well as hoped.
I also have a ds going through exams so am having to hide my worries and appointments from him at the moment. My biopsies next week are on a day when he is in school for an exam so that has worked out well. I know I have to tell him sometime soon but am hoping I can wait until the exams are all over. It's very difficult.

Thanks Chewingawasp , it just seems a bit surreal doesn't it? I came home and as usual DS says "hi Mum what's for dinner" like a typical boy . I feel like I should be on the stage with my acting this week ! Hopefully we will both be getting good news soon

I have my fingers crossed for you. Not too long to wait now.

The waiting and keeping up appearances for the children is horrid sending love to you both. On the plus side though it's having to make tea and do the washing that keeps you going sometimes

Amber the consultant was happy they'd got it all under control in terms of fits, saying really they were a blessing as this tumour could have been there a decade and would have progressed to grade 3 at least if not discovered. Now my tongue I'd healed my speech is back to normal. He said if I wasn't pregnant he'd be operating sooner but given the scans he doesn't feel it's likely to develop much more before the baby arrives so it was a discussion about risks v benefits and the risks of early surgery to the baby outweighed the potential benefits at this stage. This might change at my next scan in August depending on what it shows. But by then I'll be heading towards 30 wks so in a much better place.
I can't imagine trying to hide this kind of stuff from older dc. It must be so hard. My dd is only 13 months so no need to pretend in front of her. Though as a secondary teacher i have had to tell my y11 class what's going on and why I've abandoned them at the last minute. They've sent me a message saying they'll work extra hard to do me proud which made me cry! Such rubbish timing, isn't it?!

It is, for sure. Hoping the next scan shows it's still stable and you can defer things as per his plan.

Waving to amber. Thanks for keeping us up to date with the latest research :)

Littlegrey that sounds reassuring. I'm glad everything is under control with the fits. And yes, lucky they found it sooner rather than later!

Your students sound lovely :) will you be signed off work now for the rest of the term?

Fingers crossed for your August scan

Celendine sorry you've got an anxious wait ahead, fingers crossed for you. And good luck with hiding it. Hopefully DS will be so distracted by exams that he won't notice if you're a bit off.

Good luck to you too chewing

I think mrsrhod managed to successfully hide her diagnosis until her DD had finished exams :)

Hopefully you'll soon have good news anyway and nothing to hide

Waving to everyone. I'm feeling a bit weird at the moment. It feels quite absurd that I have cancer. I'm also struggling to get the balance right between reassuring people and explaining the severity. Half of them are expecting me to die any second now and the other half seem to think it's just a case of a few more rounds of chemo and it'll be gone... I guess it takes a while for the information to sink in :)

Sorry to not come back and post. Well my biopsy results just showed normal breast tissue. Phew! However, I have been left with a huge blood clot at the biopsy site and my pain and rash are worse than ever so she wants to review in 3m.😕

Just popping in to say hi, not much to report but going to hospital on Monday for radiotherapy planning (ct and tattoos). Going to return to work for a short time on Tues before radiotherapy starts as just feel as if I'm in limbo right now.

Waving to all, old and new, hope you have a nice weekend.

Just a quick hello from me too and to confirm it was me who kept my diagnosis secret two years ago when DD was doing her AS levels. Not easy but it was more important to give her the peace to get through them than for me to weep and wail about the house. She's just completed her first year at university, that wouldn't have been possible if she'd messed up the exams.

Leslie, it still amazes me that people understand so little about cancer. Even before I became so educated I knew the basics such as if it spreads its a case of managing it rather than cure. I've tried to explain it to friends, I could almost see the barriers going up, very strange. But then I've had a few relatives with it too.

DH and I are off for a night away tomorrow, in Whitby, first view of the sea this year. There will be fish and chips.

Thinking of everyone still in limbo waiting for tests and results.

Hi All

Thinking of you Littlegrey and how tough it must be for you but there is a fair bit of positivity to be read from your consultant if I understand correctly?

Celandine, fingers crossed you get your results soon. I found that initial waiting period the worst, even though I knew in my heart of hearts what was coming. Tóg go bog é

My OncotypeDX results came back and I don't need chemo. I'm very lucky to have had the test and that it is so specific. I understand the test is going to be rolled out more and more. Before the results came in I met with the oncology team and they were full of doom and gloom, cells upgraded, lump bigger than thought, some in sentinel node etc, chemo will probably be EC and Pal and I had a total meltdown out of the blue while the lovely consultant was mid sentence. How much of an idiot did I feel? Then the results came back that I didn't need it and everybody is completely shocked!

They wanted to start me on Tamoxifen immediately but we are going away for a week and I'd rather not tackle the SE's of that while on holidays so will start end of June and start radiotherapy then too.

So now I feel like a total fraud. Maybe it stems from somebody asking me if I had 'real' breast cancer. (Eh, I wasn't aware there was a FAKE breast cancer??!). I know I've dodged a bullet re the chemo but I can't help feeling like I don't have 'real' cancer and should now just put up and shut up.

What a frixking roller coaster eh?!