Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

ilovechocolates fantastic news! What a relief :)

Tw1nset I hope you enjoy your trip to London. Gradually introducing foods is sensible. It might help to keep a diary too.

likeazebra fingers crossed for your June results welcome to the thread!

Leslie thanks for the kind words.
Just got out from consultant he was lovely. Got in early before my appointment which was good . He examined me found no visible swellings.
Said statistically very unlikely to be cancer but he can never be 100 per cent so he is doing a CT scan and a colonoscopy to have a good look. Both will be done on separate days and will be done within 3-4 weeks. I am very glad he's being so through. He said gallstones can cause these problems !
Got to say it was an nhs appointment in a private clinic . The difference between a normal and this hospital was words apart. If only I was rich !!!

He @likeazebra , mine was also a neuroendocrine tumour in my small bowel with lymph node involvement. I am also being scanned every six months for what they described as the forseeable future.

I don't know if may cancer made me gain weight - I think it was the chocolate and wine  but I defiantly need to lose a few stone. My whole diet seemed to consist of things I shouldn't eat but I need to keep reminding myself that I am lucky to be alive and so not being able to eat a whole meal seeded loaf isn't the end of the world.

Do you work @likeazebra . I am really confused about when I should go back. I was hoping the start of June but I am so tired. But maybe I am tired because I am not doing much.

@VLCos I am glad the appointment went as well as it could and that they are looking into things. I have to admit that I was looking at the price of private health insurance as I found the long waiting periods difficult but I guess I wouldn't. E covered anyway - and we have no money anyway.

@Tw1nsetAndPearls thank you :-) I am reassured they are doing everything they can. Just means more waiting but with little ones you have to get on with it.
What are CT scans like do you know ?
Hope you have good weekend x

@Tw1nsetAndPearls I started doing very short hours after 2 months and full time after 4 months, it was too much too soon. I'm in the process of cutting my workload and hours as I am struggling to be honest. I still get pain and am very tired all the time so hoping a bit of me time will help! Good luck with your return to work but do take care and put yourself first.

Just saying hi to get on the thread, will read and post properly later!

Thanks Leslie-I am super aware of everything right now-I'm driving myself mad.
VLCos I got my letter through this morning to make an appointment for a consultation-like yours at a Private Hospital.Does this mean my Colonoscopy will be done there also?
I had a CT Scan not to long ago-it is fine.
You just get undressed and wear a gown and lie down on the table which moves into the scanner-a nurse talks to you over a speaker and tells you to hold your breath etc...Some people report feeling like they need a wee when the contrast is injected but I didn't notice any difference.
Good luck for your Colonoscopy-not long to wait now at all!!

VLCos I'm glad they're being thorough, but that he isn't concerned. There's some information about CT scans here including a video. I haven't watched it so no idea if it's useful! But they're really not too bad. The room is quite cold because they have to keep it air conditioned to stop the machine overheating. You lie in a bench which slides through a big doughnut. It's less claustrophobic than an MRI scan. The machine will tell you when to breathe in and out. You might have to drink a couple of litres of water beforehand. And possibly drink some contrast. You shouldn't need a full bladder as the water is just to make sure your bowel shows up well. So you should be allowed to wee when you need to. If you have contrast injected then it can feel warm and tingly, almost like you've wet yourself. It's a bit weird, but doesn't last too long. I sometimes get a tingling in my cheek or chest too and a strange taste in my mouth.

Funnily enough I had one of my appointments via NHS but at a private hospital and I hated it. It felt more like a hotel than a hospital. But I'm very found of "my" hospital. I was born there and have had most of my life changing moments there! It feels like home even though it's a bit shabby :)

Tw1nset I hope you'll be able to introduce more of the foods you like soon :) my diet was very restricted for the last few years and it's actually more varied and healthy now that I'm on my post op low fibre diet bud I'm trying to resist reintroducing more adventurous things for a while!

@likeazebra I am hoping to go back six weeks post surgery but from talking to people I am not sure how realistic that is. However I feel a fraud staying at home for being tired .

Cross posted charlie I'm glad your appointment has come through

I meant to say VLCos they'll warn you over the intercom before they inject the dye so don't panic. They'll do one scan beforehand then do another one after injecting the dye. Also remember to remove everything metal beforehand. Sometimes you're allowed to keep your trousers on under the gown if they have no metal bits, but sometimes not. One time they said I could but then I had to pull them down to my knees and waddle/hop onto the bench. It was far more undignified than just being in my knickers under the gown

@charliebear78 that's great news about your appointment! I'm having the colonoscopy at the private hospital I'm sure you will to.
You would think of there was anything it would have been picked up on your CT ? So it's a good sign everything was clear .

@WhatWouldLeslieKnopeDo thanks for all that information it's been really helpful as I just thought it was similar to an X-ray. Do they give you the results straight away ?
I really thought he would do one or the other not both .
He even said is the pain higher up in your stomach . Are you worried about that . Like he might include another test !

Hi. Tried to post yesterday but it just wouldnt connect
Really happy to report that it was a false alarm. Oestrogen tissue build up. ( Can't remember the exact term was - too relieved )
Nothing showed on the mammogram or ultrasound.
The breast clinic was simply amazing. NHS at its best

Gold I really hope the news is good for you.
Thank you all xx

@Wishingitwaswarm fabulous news :-)

@Wishingitwaswarm that is fabulous news

Phew wishingitwaswarm :) really pleased for you!

Evening all.
Great news Tw1ns, wishing and chocolates
I have had a relatively quiet week. Went to the hospital for regular injection to be told that I was a week early . I wasn't - my appointments are all out of sync again on their system. I had to wait 45 minutes for a doctor to issue the prescription and the pharmacy to dispense it. It's really frustrating that this has happened again and I shall be mentioning it to my consultant next week along with various other things. All the chemo appointments are also not right . I'm fed up of having to deal with admin errors.
Hope you all have a good weekend.

Hello lacies. Quite a number of newbies.I apologise for not being constant, but I do try to follow up with the posts.leslie i am fine thanks. I have a follow up coming up and we know how those have been so far
mrs lovely to hear from you . I do hope you have an enjoyable holiday.
Waving to each and every one of you lovely lacies.

Bloody hell chewing when are they going to start treating you with some bloody respect. Hope they get their act together for the rest of your treatment.

I'm on my way to the Shine cancer conference in London - feeling a bit shy already, but hoping it will be interesting.

Morning lacies and thank you leslie for the new thread and being mama elephant
Brief history diagnosed January 16 stage 2b er+, pr+, her2- breast cancer. surgery, chemo, radiotherapy now on anastrozole and 6 monthly bisphosphonates.
I am currently working my notice only have 5 weeks to go and I can't wait . After my bcn referred me to psychological medicine I am now on antidepressants and I can't believe how much better I feel although I am furious that work was the tipping point for me . On the positive side the joint and muscle pain seems to have finally reduced which makes a difference. Love and light to all xxxx

Morning lacies! Leslie I'm doing fine thank you - 4th FEC next week so I'm having a few days on the coast now. Looking forward to being half way through.

Helly I'd be interested to hear how you've got on with the 6-monthly bisphosphonates. I'm not keen on having to take them orally for 10 years!

Waving to all and hoping it's sunny where you are.

Hello everyone, I have read and caught up but not feeling very with it after chemo on Thursday...
Twinset I was also teaching, I think early June may be a bit too soon for you still, although are work fairly flexible? Would they be ok with part time to start with? ANd good to hear the better news.
Wishing and chocolate also great to hear good news.
To those with possible/actual bowel cancer and scans coming up good luck and hope it goes ok. I had an appointment with my colorectal surgeon a couple of weeks ago. He discussed the possibility of stoma reversal but for the moment I'm saying no as aware there can be quite a few issues and with stage 4, and the side effects of chemo, I'm not sure it's worth it. He also said at some point they will look at operating again as, because it was emergency surgery first time, they didn't get rid of all the tumour initially. He also said it depended on how responding to chemo and shrinkage but the tumour in my bowel had shrunk from 3 to 2 cm after the first 3 months of chemo. But he also said about balancing quality of life v quantity...
In other news I got the DS1500 form from Oncology nurse and Maggies financial advisor sent it off for us , had a phone call to PIP people and got full living and mobility allowance.
I also got a letter saying my Statutory sick pay is ending, but I think I'm still on half pay until the end of term so not sure if I can apply for ESA yet. Also need to properly look into life insurance policies and pensions as could do without financial worries on top of this!
Hope everyone is having a fairly good weekend x

hello to all, thanks for thinking of me and my wayward kidney Leslie!

im still waiting on an appointment with the bone consultant but in the mean time blood tests have flagged up high cholesterol which is being blamed on the letrozole -not the cake i eat thankfully ;-)

due to the nhs hack the other week all nhs emails are bouncing back so i havent been able to contact the plastic surgeon about reconstruction...im so in 2 minds about it, or even which one to go ahead with after the awful experience having my kidney out

if anyone has had the tummy/boob reconstruction and wouldnt mind sharing the experience id appreciate an honest account

baubles I had that op last summer albeit as an immediate recon at the same time as my mastectomy. If you want to pm me I'm more than happy to share my experience. In short though I am really pleased with the result and have no regrets

Hi all. I have been lurking a while.
I was diagnosed with DCIS in March. Mammogram indicated 2 clusters (9mm and 4mm) and biopsy revealed high grade DCIS.Had a WLE in April but they didn't get clear margins.
When inserting the wires on the morning of the WLE they found another cluster. Then, they found a lot more DCIS in the breast tissue removed (260 grams!) than had shown in the mammogram and so recommended a mastectomy with immediate reconstruction - which I am due to have in a couple of weeks. I am hoping that once they have removed the breast tissue only DCIS will be found. If this is the case I won't need radiotherapy. I am having a sentinel node biopsy at the same time as this cannot be done after a mastectomy and so it is important that this is done incase anything more than DCIS is found.
Baubles - your post prompted me to post as, like you, I am really not convinced about an immediate reconstruction. The thought of having to be in hospital for a week followed by weeks of hobbling around (initially with drains) and a wound from 1 hip to another, sounds horrible mainly because it is avoidable (if I don't have the recon). I do wonder if I would find a missing breast easier to cope with.
For me, feeling vulnerable and incapable for a number of weeks is as daunting as having a breast removed. I am also worried about having no feeling in my new 'breast' and am concerned that it won't feel like a part of me as a result.
Apologies to those of you who have had to endure much worse. I feel like I am making a bit of a big deal about this, but I also don't want to shut these feelings/thoughts away as that is not likely to do me any favours.
I would really welcome some ideas about what might help me make the quickest recovery post op and also what to take into hospital. Today has been roasting and this, alongside not infrequent hot flushes, makes the thought of the heated blanket concerning!

Hi all,
Newbie on this thread. I have today been referred to Clinic for further investigations under the two week timescale - after breast/underarm pain and dense ridge of tissue. Trying to be positive but freaking out a little. Feel emotional and can't concentrate on anything. About to collect DD from school.

We have family history.

Hugs to everyone