Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

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

994 replies

Lilymaid · 20/03/2015 10:25

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!

OP posts:
Thread gallery
5
malteserzz · 23/03/2015 20:44

We understand the fear nanny, even if you know things are likely to be fine that faith in our health has been taken away now. Will be thinking of you on Thursday, will you get the results straight away ? x

lovebeingananny · 23/03/2015 21:27

Hi malt I'm not sure if I will get results right away. But will ask before I go down. I would at least like to hear that they think everything looks okay. (If it does) Even if they still have to wait for the results of the biopsy to confirm it! Don't think I can cope with weeks of not knowing anything!!

mrsrhodgilbert · 23/03/2015 22:16

Hi nanny, sorry to hear you are feeling overwhelmed about Thursday. As malt says, faith in our own health has been taken away and having another bit of your body misbehaving is just cruel. I hope you get a good result and you find out immediately. I can't be doing with all this waiting for results.

I've got my pelvic scan on Wednesday morning ( with full bladder, joy) following on from the period from hell last week. I don't know if they'll tell me anything or if I will be going down the same route as you. I'm trying to remain positive but the male gp I saw last week was a bit gloom and doom. In fact, the only two people who have been upbeat and encouraging towards me have been my surgeon and oncologist.

lovebeingananny · 24/03/2015 07:04

Thanks mrs sounds like you are following the same route as me. Good Luck with it all, just don't be surprised if you end up having to have the hysteroscopy too, although hopefully your ultrasound will give you the all clear Wink

I had another rough night Sad I will be so glad when all this is over. just trying to keep busy. Although have blood tests and appointment with Lymphoedema nurse today, so that's not really going to take my mind off things!

Thanks to you both for helping me see that feeling anxious is understandable. Was starting to feel a bit pathetic, for letting it bother me so much. Especially when I am almost certain everything will be fine. Xx

BsshBosh · 24/03/2015 07:52

lovebeingananny & mrsrhodgilbert anxious times indeed; I call it "scanxiety" and have my own scan over Easter to see whether the second line chemo treatment is working or not. Will be thinking of you both on Wednesday and Thursday.

mrsrhodgilbert · 24/03/2015 08:35

Hi nanny, well thanks to your posts at least I know to expect tomorrow to be inconclusive. I find the radiologists at my hospital are the least communicative of the whole team, I don't really know what they're looking for or the consequences of what they might find. I'm actually wondering whether to call my bcn to see if she can offer any words of wisdom. I'm seeing my surgeon in two weeks for a follow up appt, from last summer. I suppose this is all linked so he should be made aware of it.

Sorry you had another bad night, lack of sleep is horrible, the middle of the night is horrible. I understand your frustration at yet more appts today, it seems to be never ending. In theory I shouldn't have been near a hospital since last September but actually I've had scans and appts for unexpected things every month since. It just keeps it all very much at the forefront of my mind. I'm sure if I had had a free six months I would be feeling emotionally stronger by now. It's also coming up for a year since I first went to my gp so I'm expecting my annual mammogram very soon, with its three week wait for results.

I hope today isn't too stressful for you.

lovebeingananny · 24/03/2015 09:19

Seriously mrs I could of written your post! I am a year on from the end of Chemo. But like you have had hospital/doctors appointments almost every month. I just feel like I'm stuck in quick sand and not getting anywhere! Then add to that the fact that everyone around you ASSUMES you are 'better'! No one seems to understand that there is still stuff going on.

I have my mammogram at the beginning of June, so I'm sure that'll bring with it a whole host of anxieties. It's just a really long roller coaster ride. But I think I'm ready to get off now! Wink

Right I need to go and get blood taken, oh what fun!

Bssh thanks for the kind words and wishing you all the best for your upcoming scan x

mrsrhodgilbert · 24/03/2015 09:37

I've just phoned my bcn. Unfortunately I got the young one who is doing a maternity cover. She is lovely but very wary of actually telling you anything so I usually end up frustrated. If I hadn't asked directly if they were looking for uterine cancer she would not have mentioned it. It was another conversation about just having to wait for the test results. I'm a big girl, some adult discussion would be appreciated if I've taken the trouble to call.

Everyone assuming you are better, I'm not including my family in this, also rings very true. I have a couple of friends who I have known for over 30 years who have really surprised me with their handling of this. I feel really let down but have known them for so long that I have to maintain the friendships, our whole families are friends. I think they're embarrassed or worse, think its catching. They have no idea that the emotional scars take so long to fade, let alone the ongoing physical issues. We've been out for meals with them when they have asked, as I'm putting my coat on at the end, if I'm ok now. Ffs, it's so hurtful.

mrsrhodgilbert · 24/03/2015 09:52

Thanks Bosh, it's no fun all this. I think your term scanxiety is excellent and should be officially adopted here.

Lilymaid · 24/03/2015 10:13

Any intervention, appointment or scan fills me with dread - even the haemoglobin results from my blood tests which might lead to blood transfusions.
If I was having surgery of any kind I would be worried, but I'm the sort who kills off the family/plans the funerals when their planes/trains/cars are late!
I also read far too much into the exact words that my Oncologist and even the nurses utter off the cuff.
My next CT scan is after Easter so expect some worried posts from me that week!

OP posts:
mrsrhodgilbert · 24/03/2015 11:33

Hi lily, lovely to hear from you. It seems like a few of us have tests and scans coming up. I'm a terrible worrier too, but usually about other people. DH on the motorway, dd1 and what she will do after university, dd2 and where she will go to university in autumn, still a hasn't decided between Nottingham an Leeds by the way! Dd2 going to Europe with her boyfriend in the summer, both dd going to Paris together in the summer. The list seems to be endless. But it's all within the family and we can control it to a point.

Being at the mercy of a hospital system and not being told exactly whats going to happen and why scares and annoys me. Being told you need a scan without explaination just leaves your imagination to go wild. I suppose they're too busy to explain everything all the time and some people don't want to know.

Whilst I'm on a roll, my particular gripe is doctors who stand over an examination table, whilst you are half naked and try to have a conversation with you. That really pisses me off. I must be more forthright in future and ask if they will let me get dressed first before the discussion. It puts you at a real disadvantage.

I'll look out for your posts after Easter.

BsshBosh · 24/03/2015 11:40

I had cancer before this, 15 years ago, all clear after 2.5 years of treatment but the emotional after effects didn't leave me until a few years of remission. Even though I was better I still couldn't handle any conversation or programme about cancer - it'd reduce me to tears, bringing back memories and latent fears for my future. No one understood except my future (at the time) DH; everyone expected me to have moved on! It's tough having cancer, but it's tough being in remission too.

lovebeingananny · 24/03/2015 11:50

mrs the reason for the ultrasound, is because Tamoxifen can cause thickening to the womb lining. So when you have either bleeding after the menopause or bleeding after 12months without periods or just very heavy/unusual bleeding. They like to be extra cautious and check it out. I think your on Tamoxifen? If not then that won't help much Confused

I had a lovely lady Doing the ultrasound. She explains that my lining looked thicker than it should be, so she thought my oncologist would probably want to investigate. Think they just like to be super cautious, which I suppose is a good thing. Even if it doesn't feel like it!

Let's hope your scan shows all is normal. Oh the joys of being a woman Hmm

Marshy · 24/03/2015 11:52

Scanxiety - spot on! Sending good vibes to anyone with scans and investigations coming up.

Nanny and Mrs - I was going through the gynae thing last summer at the same time as discovering that I needed a 2nd mx, so that was fun.

My understanding of it, from the tiny bit of research I allowed myself to do at the time, was that tamoxifen can sometimes cause the lining of the womb to overgrow. There is a chance that can become cancerous. An early sign of that can be 'abnormal' bleeding ie post menopause or outside of usual menstruation. Because it's such an early sign, any problem is usually very treatable.

Now of course that scenario leaves loads of room for there to be absolutely nothing at all wrong. I'm no amber and I cant quote the statistics but my understanding was that its far more likely to be nothing than something.

I was investigated because of my age - 54 at the time - and everyone assuming that I must be post-menopause. I was pretty convinced that I wasn't and that the bleeding was just normal for my body. But I had to go through the investigations - external and transvaginal scan which was inconclusive owing to my mirena casting shadows, followed by a hysteroscopy during which I had a 'global' biopsy and a biopsy of a small polyp. Both came back entirely normal but it was an anxious wait and I cried in the doctors office when i got the results Blush

As a delightful little side issue, they discovered an ovarian cyst on my right ovary at the time of scaning my endometrium and as my CA125 came back slightly elevated I had to have a CT scan. I got the results of that the same week I was told I had to have my 2nd breast removed. The gynaecologist was a bit vague and said to go back and see him a few months later when I was over the breast surgery.

I saw my lovely BCN a few days later to talk about the practicalities of the mx and she went over the abdo CT scan with me and basically said that there didn't seem to be anything to worry about there.

The upshot was that I saw the gynae in January and a more recent repeat ultrasound showed my endometrium to be normal and that the cyst had disappeared of its own accord. CA125 had also returned to normal.... so all of that stress and worry for nothing........ He discharged me.

I don't know how helpful this epic post is. I can reassure you nanny that the procedure itself is nothing to worry about. I found it uncomfortable, but I was able to drive myself home afterwards, and I didnt need to take the meds I was given to stop any bleeding - I had very little. Get some sanitary towels in though. You wont want to be putting a tampon up there! And some paracetamol. You'll have the after effects of the GA to deal with, but you know all about that. And at least you wont be squirming with the procedure like I did.

Waiting for results is always going to be a crap experience even when the chances are its going to be absolutely fine. You know where we are for hand holding.

Before I went through all this, I used to hear that people were waiting for results and I thought very little of it. I had no idea of what that meant and how horrible it is. I think I have much more empathy for people now. I have found friends vary in their responses. Generally I've found those who have been through something similar to be most understanding. I have 2 close friends in that category who have been fantastic. Others are usually sympathetic but just expect you to be back to normal - whatever the hell that is. And some seem frightened to talk about it. I think that having this kind of thing so close to them is scary - like "if it happened to her it could happen to me" and they dont want to think about that which is understandable.

Counselling has been helpful. It's good not having to worry about the feelings of the person I'm talking to, and being able to be honest.

That's my posting allowance used for the next 3 weeks! Wishing everyone well and thank goodness for this thread...

Marshy · 24/03/2015 12:00

Lots of x-posts whilst ive been writing my epic!

Yy to half naked consultations - why do they do that??

I can tell my story without crying now. i think i have the counselling and the ADs to thank for that.

Slightly worried as i have had some very slight spotting over the last week and wondering if GP will want to refer me back. Bloody well hope not! I'm not on tamoxifen any more so hopefully not I think it's menopause.......and so it goes on.

foofooyeah · 24/03/2015 12:06

After all,

scanxiety should be in the oxford English dictionary.

Just to reply to Bssh my friend had both his lung and liver resectioned for mets.

lovebeingananny · 24/03/2015 12:09

Thanks Marshy it's good to hear from someone whose been through it. Fingers crossed we can all get back to our 'new normal' soon x

mrsrhodgilbert · 24/03/2015 12:17

Your epic post is very helpful marshy, I always love to hear about the experiences of others. I think I'd be pretty unlucky for my scan to show up anything serious after less than a year of tamoxifen, but I don't like the sound of them stopping it if there is too much thickening. I don't know what the alternative is.

It sounds like the uncertainty went on for months with you and all that time you have to try to function normally. No wonder you wanted counselling and I'm pleased you found it helpful. I don't like to go on too much about my fears to DH and those friends who will listen, a neutral person sounds very useful. This thread is so fantastic, people who know exactly what it's like. It's great to hear you've been discharged now from gynae.

mrsrhodgilbert · 24/03/2015 12:26

Nanny, I'm 50, been on tamoxifen since last July and this was the first period after about 8 months of nothing. I think they're just being ultra cautious but until they have a look are unwilling to discuss outcomes. I'm just frustrated at having something else to worry about. I hope I get a nice person doing the scan, it makes such a massive difference to how you feel coming out of there.

Marshy, oh no, you're probably right about the menopause but once a thought is in your head its hard to settle without being checked out.

Marshy · 24/03/2015 12:33

Mrs I came off the tamoxifen cos it was no longer clinically indicated. I don't have breasts any more and my cancer was non invasive DCIS. Also having it after my first mx didn't prevent me from needing a second mx so all in all the team decided there was no advantage in me continuing. It had been a bit of a debate as to whether I should have it the first time around.

Re the counselling, I think it does give my family and friends a bit of a rest from having to listen to me. Some of what i want to say can't be easy to hear though dh has been fantastic about it. The sessions are through macmillan and are funded by them.

Marshy · 24/03/2015 12:35

Yes - I thought I had got past the age of having to knicker check in case my period had started. Last time I did that was when we were ttc Grin

mrsrhodgilbert · 24/03/2015 12:40

Marshy, I understand now why you have come off the tamoxifen. Mine is ER responsive though, so I need it.

I have been offered counselling through our BUPA care but haven't used it. I haven't used BUPA at all, apart from a few chats with a nurse there because the care has been great so far apart from a few niggles.

I'm just gearing myself up for a scan I wasn't expecting.

shrewandroo · 24/03/2015 15:43

Hello everyone, I hope you'll have me back! I'm a very sporadic lurker, sorry :/. I wanted to ask a question about docetaxol and sore throats? I've just had my 1st T chemo (and also herceptin jab). My FEC was fine once the nausea was controlled and I've been managing to work full time and carry on as normal....hence the radio silence. Then boom.....in comes docetaxol! I'm 7 days post cycle and have the worst sore throat I've ever had in my life. I appreciate that I'm also feeling really crappy and wimpy too, so pain threshold is probably at an all time low. Just come back from hospital where I was admitted as a precaution and given iv antibiotics etc but basically have been told it is possibly tonsillitis, but more likely an inflammation of my throat due to the T . I literally cannot swallow :(. Has anyone else experienced this and have any tips? I feel like I've been run over by a bus :(

BsshBosh · 24/03/2015 16:28

shrew is the sore throat due to mouth sores or fungal infection; do you have white sores on your tongue or inside mouth. I had those and it made my throat and mouth sore. So my onco prescribed me Difflam mouthwash - an antiseptic - and an anti-fungal tablet both of which have cleared up my sore mouth and throat.

Boobz · 24/03/2015 22:44

Hi everyone. Thank you for the welcome! Sorry I kind of disappeared - I am still trying to work out what on earth is going on.

It's now been 11 days since the biopsy (I mistakenly said it was a needle biopsy in my last post... there was a big fuck off needle used, but apparently this was a core biopsy, not a needle).. and I went back to the doc's to see if they had anything more to tell me.

Nothing, nada. They have "no idea what it is and cannot confirm either way whether it is malignant". I feel like that strange bird in the movie Up - some scientific anomaly?! In the meantime of getting very frustrated with the lack of diagnosis and slightly lackadaisical approach to this whole process from my Italian doctors, I have been pushing to get an NHS appointment in the UK - which I now have for next Tuesday. Totally miraculously, I have also found out I am covered by my work for private medical insurance and care as well, so also have an appt booked for Friday with a private breast surgeon consultant (both have been made aware of my journey to date!) The reason for not cancelling my NHS appt even though I have a private one, is because BUPA will only cover up to £1000 worth of pathology tests for diagnosis, and given my current path on the Italian system where they have said they have done "test after test after test" - I am worried the same will happen as a result of the sample taken from Friday's biopsy and I will go over the threshold for coverage... so am hedging my bets... I am hoping that moving to the UK system will give me some instant clarity, but maybe I am being harsh on the Italians here and they are actually right - I am a strange case - rather than them being incompetent which is what I am currently thinking...

Randomly DH read an article in the papers today saying Italy had the second best breast cancer treatment after France... and here I am rushing to get out of the Italian system and into the British one!

(My current diagnostic and histology tests are covered by yet another insurance through my DH's work, but that runs out after these tests are done).

This is no doubt hugely boring for all of you, who are going through so much worse, but I don't really have anyone to talk to about it apart from DH. Sorry.

I haven't talked to the BC nurses you have suggested yet... I still feel a bit of a fraud given it's not certain it's BC yet. My doctor today, at the appt where they told me they had "no news" said she had an "inkling it was only 50% likely to be cancer now, given the hard time my cells are giving the pathologist".

Hmm.