CANCER SUPPORT THREAD 58 - New thread, new year, but the lacies are still here! Please join us if you have any sort of cancer, or are waiting for test results

[WhatWouldLeslieKnopeDo]

Happy New Year! may 2017 bring health and happiness to us all

Welcome to oldies and to newbies. If you've just been diagnosed then this is the place for you. And if you're waiting for test results then please pull up a chair. We will hold your hand while you wait, and hopefully we will be able to send you on your way soon enough. If it isn't the news you hope for then we will be here for you.

Our previous thread is here

Following on from royalmama's suggestion (see, you're not just famous for typos!) I have compiled some of the excellent advice from the previous thread and I will post it below. I've divided it into sections to make it a bit more manageable. Please give me ideas on how to make it better for the next thread! :)

Good (very early) morning all.Leslie that sounds like great news! Hope it is all better from here on.
Fresta i truly hope it is an inflammation and it seems like it is. I only had chording once in the early days after surgery, but I do have minor Lymphodoema and wear my sleeve when I need to.
Wishing you all a good day ahead.

Leslie I hope you make your escape today.

Fantastic news about Kadcyla in Scotland. Let's hope England follows on.

Royal I would probably call your BCN or GP if the pain has lasted more than 2 weeks and is constant. Otherwise it's just going to be going round in your head. But horrible thought to be back in appointments and scans.

Love to everyone, I hope all going through chemo are coping well xx

Great news Leslie , hope you are home soon .

Good luck Chewing for your Herceptin marathon today in the chemo unit.

I found my 6 hours went quite quickly. I brought a picnic with me because I didn't want hospital food, books, iPad, puzzles. I didn't bring anyone with me because I'm not sociable to sustain a 6 hour conversation. If I had my husband sat beside me in the chair I knew he would be fretting about work, getting the children's dinner etc. So it worked for me to just chat to the chemo nurses and other patients, and mostly doze in the chair from the effects of the piriton.

Good morning

I got home yesterday. I slept so much better in my own bed :) feeling sore today, but not too bad.

Anna I hope you are recovering well

chewing good luck today! I hope it all goes smoothly

Daxaki I hope yesterday's appointment was helpful

royal sorry you've got a new worry. It's definitely worth getting it checked out for your peace of mind

mrsrhod I hope your mammogram wasn't too uncomfortable. Fingers crossed for your results.

Sorry if I missed any appointments etc. There's lots of posts to catch up on! I am thinking of you all though

Hi Leslie, lovely to see that you're home and that the surgery has gone well.

My mammogram was fine yesterday, just the wait for results now. The radiographer said it would be reported on yesterday afternoon so to call my nurse before the end of the week for the results. I've already called her today but no luck. I did chat to her about the blood test I had last month to check my hormone status. Apparently I'm now officially post menopausal so will be moving to anastrazole. The bone density scan has to be done within the first three months to get a baseline. However, it appears that nothing has moved about arranging the new drug or the scan. Apparently there's a meeting this afternoon so she's going to mention me. Good job this stuff isn't urgent!

Hell to everyone. I'm off to do something distracting.....

Oh dear, not hell, definitely hello!

Glad you're home Leslie
I've just got back from the saying hospital. Not feeling too bad yet but tired from lack of sleep last night. Kept myself busy watching a movie and listening to music so it wasn't too bad.
Hope results are good mrsrhod

chewing I'm glad you had some distractions. I'm always impressed by people who turn up with nothing to do. I take a whole bag of things I hope you continue to feel alright and that you get more sleep tonight

mrsrhod hell to you too! I hope you'll be able to get the results tomorrow. And I hope they get the scan and new prescription sorted soon.

Thank you useristired, I've sent you a PM. I'll also contact the clinic about a phone consultation.

Oh Chewing, that is so annoying. I thought that pertuzumab was available for secondaries. It's so frustrating that there are treatments, but they're not available. I'm still p'd off that pertuzumab isn't available in Scotland - but yes, Kadcyla was approved this week. Hope you're ok after today.

Glad you're back home Leslie.

I had a long frustrating appointment at the hospital today. Clinics were running late as usual which didn't help. I've joined the FAST forward trial for rads, but of course with my luck I was randomised to the control group, so it's the standard 3 weeks for me. I saw a new nurse today, who said I can't have the bone density scan now anyway as I've had the first bisphosphonate treatment. Also, they won't test my hormone levels before giving me AIs - as I'm having Zolodex she said that would make me menopausal and they don't need to check. And I should have been given Vit D supplements - the other nurse said I didn't need them. Luckily I've been taking them anyway.

Thank you useristired, I've sent you a PM. I'll also contact the clinic about a phone consultation.

Oh Chewing, that is so annoying. I thought that pertuzumab was available for secondaries. It's so frustrating that there are treatments, but they're not available. I'm still p'd off that pertuzumab isn't available in Scotland - but yes, Kadcyla was approved this week. Hope you're ok after today.

Glad you're back home Leslie.

I had a long frustrating appointment at the hospital today. Clinics were running late as usual which didn't help. I've joined the FAST forward trial for rads, but of course with my luck I was randomised to the control group, so it's the standard 3 weeks for me. I saw a new nurse today, who said I can't have the bone density scan now anyway as I've had the first bisphosphonate treatment. Also, they won't test my hormone levels before giving me AIs - as I'm having Zolodex she said that would make me menopausal and they don't need to check. And I should have been given Vit D supplements - the other nurse said I didn't need them. Luckily I've been taking them anyway.

Flippy I thought I'd posted the other day but can't see it so must've forgotten

My grandparents sent me this Telegraph article abot the Care Oncology Clinic. I looked on their website, which has some information about the drugs and how they might work, and I signed up for their information pack, but never received anything. I might ask my oncologist about it as it seems worth a try!

Sorry your appointment was frustrating. I don't know what the trial entails but I hope you're not in the control group :)

Ah, just tried again and managed to get the new patient information this time. It's not that exciting, but explains what to expect if you go to the clinic.

Good morning lacies.
Great that you are back in your own bed Leslie. Take it easy now!
Mrs I hope you are given quick and reassuring results. I have already been moved on to anastrazole and it has been ok actually. The heat flashes are much less for me now. I do have mood swings though and struggled a couple of times with anxiety. It has subsided but it could have had nothing to do with the medicine and everything to do with menopause per se.
I have used some antiinflammatory gel on my rib area and it has worked like magic..so i guess it is ok. I will keep an eye on this. My nex follow ip is in June so unless it comes back I will just wait and mention it then.
I hope everybody has as good a day as can be and good to luck to those waiting for appointmnets, results or any news.

Hi royal, I'm glad to hear the gel has given you some pain relief but more importantly mind relief. My nurse said to use it for several days.
Also interesting about the anastrazole, I'm not getting too many flushes now on the tamoxifen. They're more like moments of warming up but are less likely to make me sweaty anymore. I hope the anastrazole doesn't bring them back again.

My hospital are starting a new appt system. At the moment I have 6 monthly checkups alternately with nurse and surgeon. The consultant appt is usually about a month before my annual mammogram and causes great stress as I know there will be nothing to discuss without test results. It's just another hospital visit. From now they are going to stop the pre mammogram appt and only follow it up if a problem is spotted. I can reject this new system and continue as now, but actually for me this will be great. I'm not naive, I'm sure this has something to do cost but they're quoting patient stress as a reason.

Royal, can I ask you what type of pain you had in your ribs?

I've had a burning pain in the middle of my spine for a few weeks now and I'm starting to get in a bit of a tizzy about it. My onc is arranging a scan although he doesn't seem overly concerned - I've had to push for the scan. I just can't see what else it can be... Anyone else had any back pain? It doesn't get worse when I move about, it's actually slightly better, which sets alarm bells ringing.

I just keep looking at my kids and wondering how long I've got with them. I know most of you can relate to this...

anna, I've had the rib pain too. It's just under the breast where I had rads and just feels like a pain in the bone. Not helpful I know, but I don't get a burning sensation. It's damage from the rads, it gets inflamed from time to time, hence the ibuprofen gel. Sorry I can't be more helpful, I hope you get scanned quickly for reassurance. It's very frightening when odd symptoms arise and easy to jump to conclusions.

My bc nurse called this afternoon to say the first radiologist has looked at my mammogram pictures and thinks they look fine, a second radiologist has to look at them next week to confirm this. I feel relief of course but also a feeling of dodging another bullet.

My mother called earlier to see if I'd heard and went on to tell me she knew exactly how I feel because she was once recalled after a routine mammogram. No mum, you have no bloody clue how it feels to be diagnosed with cancer. It makes me so sad that she just doesn't understand.

Thanks Mrs. I don't think I'd be so worried if it was under the patch where I'd had the radiotherapy - but this just feels very sinister. (Well, I probably would worry because everything is worrying!)

I know what you mean about people not understanding The Fear. I also get irritated when people complain about petty ailments; I know it's not their fault, but I just think - Oh shut up! I know that's unfair but I can't help it.

Fingers crossed you mammogram will be fine.

Evening all
mrsrhod good news that the mammo is looking ok. Fingers crossed for the final result.
Hope everyone else has been feeling ok today.
I have not had any side effects so far (touch wood). Something strange started to happen yesterday though. My thumbs which had locked up and couldn't be straightened have now eased off. One is almost back to normal and the other one is nearly there. Just a coincidence maybe?

Good news mrs !
Anna the pain was actually not pain but tenderness and soreness in the ribs just below where
I had had all the work done. If I lifted my arm I could feel it and when i touched it as well, but otherwise I was ok. Also, since the rads the area where my bra hem falls feels soreand I prefer not wearing a bra when I can tbh. With the antiinflammatory gel things seems better as regards my rib area. Unless it comes back, I will just go along with life till my next follow up when I will make a point of mentioning it.
Chewingi get that and was told it is an SE from my hormonal pills. You may want to check if this is a common SE with the chemo you are having. Hope it was just a one off thing.
Waving to everybody else.

mrsrhod the new appointment system sounds much less stressful. Surely it's a bit pointless to see the consultant before the mammogram anyway and great news about the results. I'm glad you found out before the long weekend :)

Anna good luck with your scan. I hope it gives you some reassurance

chewing I hope you stay free of side effects

royal glad the gel helped and hopefully the pain won't come back

I'm recovering quite well. Yesterday I went shopping with my sister. Only an hour or so, but I haven't been on a proper shopping trip for months. I'm still sore from the op, but I'm already much more comfortable otherwise, so it was definitely worth it :)

Can I join you? At the start of February I was diagnosed with a NET tumour in my small
Bowel. It is about 1.5cm and the cancer has spread to my lymph nodes.

I have had various IBS issues for many years, my GP referred me for a colonoscopy as I was struggling to breastfeed and blood tests flagged up severe anaemia. This coupled with IBS symptoms is a red flag apparently.

I teach but have been signed off work for a a few weeks with severe fatigue. Blood tests last week revealed that as well as anaemia I now have a vitamin D and calcium deficiency.

Hopefully all the cancer will be removed in my surgery on the 24th April. I am very nervous of surgery.

I am managing to stay active and fight the fatigue with exercise. Tonight I am very ill with stomach pains and awful diarrhoea. I basically lost all control earlier which was just mortifying. Am currently sat under my woolly hugs blanket wincing in pain and feeling a little sorry for myself.

The information at the start of the thread was very helpful, so thankyou .

Sorry that became a rather epic post.

Hello Tw1nset good to meet you. Sorry to hear your story of course. I think most of us are Vit D deficient (I was severely deficient and I pride myself in spending lots of time outdoors). Perhaps a good thing about being so thoroughly investigated is that these things are spotted and treated.

Leslie I'm so pleased to hear you're out enjoying shopping!

Happy Easter to all the lacies here - thinking of you all on this special day. xxx

argymargy i didn't realise that the vitamin D thing was common. I have a super healthy diet including the foods that are supposed to be good for vitamin D and I am out most days as I try and do my 10000 steps. For similar reasons the calcium deficiency didn't make sense either

Twinset, sorry you're here but welcome.

As you may have gathered, most of us have breast cancer but there are other types too and everyone is welcome. I'm sure Leslie will be along soon to offer support and advice. It's only natural to be fearful of surgery but I've found its never as bad as you expect it's going to be. I've had a mastectomy and oophorectomy now and I've actually quite enjoyed being waited on in hospital for a while. How sad is that?

I was unaware too about the Vit D deficiency. So is that true for all types of cancer, Argy? If so, I'd better get taking my supplements.

I've still got this pain in my spine - worse at night and in the morning - which is a red flag apparently. I'm very worried, got myself into a bit of a state in the night - why is everything always worse at night? - but waiting for the scan date to come through and trying to take it one day at a time, as we all do.

I've got family coming over for tea so need to get cracking on prepping the food; and get my brave face on!

Hope you're all having a lovely easter with lots of chocolate, of course!