The Lacies are back for cancer support thread 56 - all welcome!

[WhatWouldLeslieKnopeDo]

Hello again, and welcome to our 56th thread. Some of us have been here ages and others have just joined. I hope you've all made it safely over to the new thread.

An extra special welcome to anyone who is lurking and feeling a bit shy. We are all quite friendly and we definitely don't bite, so please do say hello if you'd like to.

All are welcome here. We started off as a breast cancer support thread many years back, but all cancer types are welcome and at any point in the "journey", even if you haven't yet been diagnosed. We have all had different experiences but there's almost certainly someone here who will understand how you are feeling.

Our previous thread is here.

I have started the new thread a little early, and I will explain why in a moment.

Hi mrsrhod glad to hear that everything went well and collar bone appears to be ok. I think that once you have treatment people expect things to get back to normal but all these appointments seem never ending.
I am feeling a bit ropey at the moment but that might be because I had some lemon drizzle cake and also chocolate cake at the tea room earlier Am also feeling a bit constipated so wil need to drink a lot more water I think.

Waves to royal

Yeah chewing! It's a strange world when we celebrate being poisoned.... hope the ropeyness doesn't linger

mrs sounds like you had a good appt and your team are adopting the right approach. It doesn't matter how positive someone can be and how much they can resume their old life, this cancer does seem to cast a long shadow. Let's hope the scan in a couple of weeks is as clear as the xray

Umm....me again. So sorry.

I was trying to search for Tamoxifen side-effects and kept getting lost in all the threads without finding an answer.

I'm on Day 5 now I think....have had odd sensations in passing, but tonight my chest really feels tight, as if someone's sitting on my sternum and taking deep breaths is a bit uncomfortable, I find myself taking very short, shallow breaths - is this normal/nothing to worry about/something that'll pass?

(Oh, just wanted to say soIsit - hope your stay is a short and uneventful one, best wishes to you!)

Outlaws I haven't heard of that side effect from tamoxifen. Have you been given an acute oncology helpline to call to ask for advise? Chewing great that your blood behaved, not so great you're feeling ropey.

My appointment went well today. We discussed moving on issues and the nurse has referred me to a menopause clinic because I am finding it hard to sleep with hot flushes. I went into uni and met some of my new group who were very friendly. Very few people bothered to turn up, maybe because it was optional and Monday morning at 9 am. It was nice to get back into it, and I met my tutor for a cup of tea. The nurse at my appointment warned me that cognitive issues after chemo are real and backed up by evidence and to expect studying to be harder than before.

Outlaws, I don't recognise what you describe, either personally or in anything I've read. Sounds like you should speak to someone about that, it's sounds worrying.

Evening ... Feeling a bit more worried now and that I may be on this thread for far longer than I'd like. I had a consultation this evening and the doctor seemed very concerned that my nipple was sore and cracked and I now need to have another biopsy this week. He said he wanted to check for Paget's disease. I might lose the whole nipple if so.
I will also need radiotherapy - I haven't looked into what that entails yet?

Every appt I seem to get in deeper and deeper and I'm really worried the news is going to continue to get worse.

Sorry I'm not name checking everyone that's been supportive so far - it's really difficult on my phone! It has been appreciated!

rocket I'm a bit of a newbie and not the most eloquent writer but I have been in your position and it's hard because all you can do is keep going. It feels like small details unravel slowly and you can't plan because you don't know what's coming your way.

It makes me think of a poster that was in the photocopier room at work- did you break it? yes-no, did anyone see you? Yes-no etc.

mysilly hats off to you studying!

outlaws I agree that you need to get that checked I've never heard that mentioned as a side effect. It could be anxiety or something but it does need checking

Hi Rocket
Radiotherapy is usually given after a lumpectomy even for DCIS. It involves attending a hospital every weekday, usually for 3-4 weeks. The treatment is painless and takes about 5 minutes but the waiting around and travelling adds onto the time. Side effects are skin redness and fatigue but most people tolerate it well and many people work through treatment.

If your lump is right behind your nipple then you may well lose it. Surgeons like to get clear margins. It's not a nice thought but there are reconstruction options you can discuss. My histology report said I had no evidence of Paget's disease but there was cancer right behind the nipple. For me, having peace of mind that the cancer has been removed makes up for my upset about my appearance. But I do miss having a normal appearance.

Don't worry about name checking. Everyone finds the initial stage before a treatment plan is finalised the most stressful.

Outlaw I hope you have spoken to someone about your symptoms - preferably last night. Tamoxifen, chemo and just having cancer can raise the risk of clots so it's best to get things checked quickly.

Outlaws I hope you are OK this morning. Chest pain and difficult breathing definitely need to be investigated. If it happens again, you should phone 111 and quite possibly go to A&E.

Mysillydog glad your appointment was helpful. I hope the menopause clinic is helpful. Uni was definitely harder after chemo. Though I still did all of my assignments the night before and didn't bother to revise though I found that I'd changed so much over the year of treatment that I had very little interest in my course anymore, so probably didn't help. Are you getting help from disability services? Have you applied for Disabled Students' Allowance? You should be eligible because of the cancer. I was and I got some equipment and also funding for a mentor and other support. I didn't use all of the support in the end, but it was useful to know I had the funding if I needed it.

rocket fingers crossed for your biopsy. I don't know anything about Paget's disease, but it is always worrying to need further tests. Radiotherapy sounds like a pain, mostly because of all the appointments and travelling, but it should give you extra reassurance that they've got everything.

mrsrhod glad your nurse was helpful and fingers crossed you can get some acupuncture soon

chewing yay for chemo! I hope you're not feeling too rough today

My CT scan has been cancelled because the scanner is broken! I should get a new appointment soon. Hopefully it'll be third time lucky

Sorry Mysillydog I'm getting deja vu now and thinking maybe I already asked about Disabled Students' Allowance. Cognitive difficulties are definitely a real chemo side effect

Afternoon all.
outlaws hope you are ok now.
Leslie I am not feeling too bad today thanks. What a nuisance about the CT scan. You get all geared up for these things and then plans change at the last minute
silly glad your appointment went well.
rocket hope you get a full diagnosis soon. The waiting around for biopsies etc is a worrying time.

Outlaws, are you feeling better today?

Rocket, sorry to hear you have further uncertainty, this is the worst time because your mind goes crazy and you don't understand what the future holds or how the treatments work. Radiotherapy is a pain in the sense that you have to get yourself to hospital every weekday for several weeks. The hospitals with rads units tend to be the massive city centre ones so this can mean a lot of travelling. I'm assuming private patients use the same facilities as NHS patients. It's boring more than anything, can be uncomfortable but it's certainly nothing to be feared.

28.5 degrees today, what is this madness. The only good thing is that DH is away tonight so I gave the bed to my(sweaty)self.

Leslie, sorry you didn't get a scan today. Hope they don't keep you waiting too long

Rocket, as worrying as it is, it's good that the Dr is taking everything seriously. In amongst the roller coaster of emotions you may find that eventually you can accept losing a nipple if it means that the cancer is gone. As to radiotherapy most people seem to find it quite bearable, it's the daily commute to the hospital that can really wear you out. I found it affected me in a way I didn't expect - I think it was coming face to face with a huge machine that obviously had a massive amount of science behind its development that made me realise I was being treated for something pretty serious. I think I may be alone with those thoughts though !

So on the hottest September day for decades - ever? - my blood has been boiling thanks to red tape! DD's school has new caterers this year (thanks to the LEA switching contracts for the entire borough during the last week of last term).

Because she has a severe milk allergy (think anaphylactic reaction) she needs to have a 'special diet' menu. To complicate things she has cystic fibrosis which means she has to have a high calorie high fat diet - always an interesting proposition when you can't give dairy. Despite requesting a menu 8 weeks ago and hassling school/caterers every day last week I have only just been sent the menu. Whilst every other child will be tucking into crumbles, fancy sponge cakes, muffins etc they are just offering a dairy free cupcake every day. That's every day for the entire term! All because it's not in their strict policy to provide a tub of dairy free spread so the cook can make safe substitutes (which she did before) arrghhh. Anyway I've cited disability discrimination to them and asked them to pull their fingers out. Rant over! Hope everyone is surviving the heat or the rain

Evening Lacies!

It's been so warm today, I hope everyone receiving treatment has been able to find somewhere to keep cool.

Leslie, how annoying, I hope they fix the scanner soon.

Rocket, I felt exactly the same as you when first diagnosed, it felt as though every appointment brought worse news, I'm sure it will lift soon and you get one where the news is better than expected. You have my sympathies for now though, hang in there.

minty, that sounds very frustrating indeed, rant away , I would!

Outlaws, I don't think chest pains is a side affect of Tamoxifen, I would get that checked out. Could it be anxiety related?

It wore off after a couple of hours. Waiting to see if it happens again tonight - it was two hours or so after taking the tamoxifen so am trying to figure out if it's a side effect or a massive anxiety related thing. I don't trust anything I feel anymore.
I'm having a very difficult time with my little guy, the sudden weaning is heartbreaking for us both and he's sobbing himself to sleep. I feel like such a heel. I know it's no ones fault etc. but I feel like I've failed them really. They're just so little. What a shitty card to draw.
Still waiting for a chemo date. On the 8th the doc said within 10 days but I haven't heard as yet. Am thinking I'll get a short-short hair cut as I haven't had one before and it'll maybe take away an element of shock later as well as allowing me to momentarily believe I'm in control, ha.

Evening Everyone, haven't posted for a while as DH and I have been away on holiday, we even managed to get some nice sunny weather! The thread seems to have been really busy in the last couple of weeks so I'll do my best to catch up with everyone's news.

outlaw I'm taking tamoxifen too and the leaflet that came in the pack says 'any sudden breathlessness needs checking by your doctor'. I'm sure its fine but better safe than sorry and if it is anxiety related then hopefully it will put your mind at rest as it'll be one less thing to worry about.

I'm just popping in to extend a hand to hold for anyone who needs it . Waiting for results is pure purgatory . And the worst of hells for those who haven't got to the waiting for the results stage because they are still waiting for the bl**dy test .

Outlaws my heart goes out to you ,it really does .Try and remind yourself that listening to your lo's distress is worse for you than it is for him. He truly will get over it and won't remember it .Big hugs .

I've been for my first annual mammogram and ultrasound today. The sonographer thought I had an infection under the nipple area so need to get that checked now, but breast care nurse wasn't responding. I had noticed it was very slightly pink but had put it down to radiotherapy side effects still. I've got a follow up appointment with the radiologist on Friday so guess I can ask him about it.

Oh dear fresta, there's always something unexpected to deal with. That's a new one on me, at least you only have a couple of days to wait, or could you call your nurse yourself?

Thanks for letting me stay, but I get to move on out of here and leave my chair for someone else.

Relieved to say I've got glandular thickening and nothing needs to be done about it.

The consultant said three things to me at my appointment that maybe beneficial for others.

7 months from noticing a change - you'd know if it was serious by now!!

A lump is a lump not some undefined lump with no definitive edge.

But carry on being breast aware!

In my opinion it's very hard for a lay person to know what should/shouldn't be checked. And the GP agreed it should be checked.
So still go and get anything checked and like me within 15 mins you could be sent on your way relieved but feeling you were wasting their time.

But hey better to do that than not have done anything.

So keep checking everyone, and those of you on here who are undergoing treatment, here's for a successful outcome and all the best for the future.

Fresta hopefully this is just a small infection, but I think it's natural for anyone with a history of cancer to worry.

Brilliant news SoI. At my breast clinic visit I was told that my breast tissue felt like a thickening rather than a lump, but they sent me off for imaging anyway. As soon as the radiographer took the mammogram her demeanour changed and the biopsies confirmed cancer. As my cancer was multi focal it didn't present as a single lump.

Most breast clinic referrals are not cancer, but they are definitely not a waste of time.

Oh fresta that's not what you wanted to hear :(. Anniversaries are always stressful times without an extra worry thrown in. Hopefully you'll get answers at your appt tomorrow .

SoIsit that's great news, you must be very relieved. I think you will have had enough of cancer in your family already so I'm pleased that it's not touched you. Wishing you all the very best

In chemo fog, but yay for So (not a waste of time at all) and a hug for Fresta. I hope the infection clears up quickly.

Outlaw huge hugs. I don't have children, but their little cries just go right through you don't they does he have a dummy? I know lots of people hate them and they're not ideal, but if you were feeding him to sleep previously maybe it would bring him similar comfort

Waving to everyone else