Cancer support thread #73 - come in, we're here for you.

[Trumpton]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is HERE

Current members, please do introduce yourselves smile

Thank you WTF99. Yes, it was picked up by a routine mammogram, my first one. No other symptoms, nothing. It was such a shock. I still feel in shock, does the shock fade a bit?

Cranberry juice is very soothing for UTIs, you can even take cranberry tablets as a preventive.

@Bloodybridget Thank you. I hope you're doing ok?

@peaceanddove Yes it's this coming Tuesday. I haven't had any symptoms absolutely nothing apart from that tiny lump I found. My mum was saying those cells could have been there a while and finally clumped together hence the lump. It's a good sign it's early if it's not even a lump yet. I'm no expect though! Mines aggressive and fast so I'm guessing that's why I'm going in so quickly. Only got surgery date yesterday. Are you in London?

Hi. It's good that you're getting it over and done with so quickly. Mine is apparently "like a few grains of rice" spread over an 8mm area. Some are benign calcifications, but some are invasive, so a lumpectomy it is. Mine is either a stage 2 or grade 2, not sure which? Or if that means it's fast?

Am thinking of you, and the sooner this is out, the sooner you get back to normal.

@peaceanddove, I took Tamoxfen briefly until the injections of something I can't remember put me into menopause. Since then, it has been letrozole, which was switched to anastrozole when I told the team that I was finding the aches in my body too much to cope with.

I had major brain fog, but that's has resolved itself, thankfully!

Oh, and the terrible hot flushes and night sweats! Again, resolved when the doctor prescribed Oxybutynin twice daily.

@Bloodybridget No Dp but I do have family.

My oncologists secretary called me back. The oncologist reviewed my info and said no cause for concern at the moment as I am premenopausal but to call back if it happens again. I did have my annual blood tests done in December so that info would be up to date.

Am mildly relieved but still pretty anxious if it happens again any scans etc will be delayed.

@peaceanddove I'm not sure to be honest. Mines stage 1 grade 3 so it's aggressive and fast. It's 18mm now. Was 15mm two weeks ago.

@peaceandove I didnt feel a lump either. Mine was 15mm dcis of which 4mm was grade 2 cancer. My biopsy scan looked like grains of rice. Luckily it was found via a routine mammogram.

Hi everyone - just a quick check in, as can't sleep due to steroids! Had 5th chemo (docetaxel, perjita and herceptin) yesterday- only one more to go.

My haemoglobin was 93 which I was told is borderline low. I've had quite a lot of dizziness, fatigue (probably chemo related), breathlessness (I'm asthmatic - but well controlled), some confusion and lack of concentration (can't remember words, etc - very annoying, but put down to chemo brain). Has anyone else had this? Did you receive treatment? There's talk of blood transfusion if it drops lower, which I'm not keen on.

Hope everyone has a good weekend.

This time next week I will be finished the 12 weeks of paclitaxel.
UTI cleared in time for this weeks and I was upfront about being poorly but said I was ok now . The nurse twinkled and said “ Well, bloods don’t lie “
So I was mock offended and asked if she thought I would Lie !
She just repeated
“bloods don’t lie “
Anyway chemo went ahead and they will remove the picc line next week .
It was the fastest treatment ever as I fell asleep at the start and woke 10 mins before the end .
I was discussing it with DH and apart from the extreme tiredness , a chest infection and two UTIs I really have got away fairly lightly . Yes I have lost body hair and still have mastectomy and reconstruction and then a further op on healthy breast but do feel amazed that this was picked up so early at a routine mammogram .
I was thinking that my diagnosis was very gradual from the first
“ We have found a tiny area that we would like to biopsy “
then 2 lumpectomies and node biopsy .
Then a proposed mastectomy and the results that I am HER2+ so needed chemo and Herceptin and the mastectomy was delayed from November to March to allow for that .
So I never really had the dreadful shocking news all at once it was much more gentle for me .
Musings after a night of intermittent snapping awake and the weird realisation that the unit that has been such a part of my life will soon not be .
My thoughts to all at The Patience Inn and all of you .

@Trumpton glad you got chemo yesterday, finishing that phase of treatment will feel like a landmark, for sure!
@Zorgothslugofdoom I've had low-ish haemoglobin most of my life, but never low enough to cause concern (just ruled me out of blood donation). It didn't dip much during chemo although my neutrophils were problematic. I did feel lightheaded at times, not really dizzy. Forgetting words is just daily life! In your shoes I would mention all the issues you're experiencing.

That's good news Trumpton. I do understand how disorientating it must feel to finish your treatment when it's been such a big part of your life. Do you have anything planned for the immediate future?

@peaceanddove
6 weeks to recover and build my energy levels . We are going to a weekend interceltic festival in S Wales at beginning of March and mastectomy in middle of March . We have also booked for a festival in Brittany in August . Happy times are coming and they will for you as well .

@Zorgothslugofdoom I've had several blood transfusions (not cancer related) and while they did make me feel better very quickly they got progressively harder as in my body reacted to them. I was told that the body reacts in a similar way to organ transplant - of course on a much more minor scale - and the more you have the more your body wants to reject them. The last one I had made me feel very peculiar. Anyway I guess they won't do one unless you really need it and if you do it'll make you feel much better quite quickly. I remember the tiredness and breathlessness of severe anaemia, it's not nice.

I've completed my first full week of rads, six treatments down now and 24 to go. The radiographer said, another week done! as I hopped off the scanner, and then, well first week done anyway. It feels like a long way to go but I'm sure it's the travelling that's making me feel so drained. Interesting @CointreauVersial that you feel a fraud for not feeling worse with the treatment; I feel like a wuss as I'm finding it so hard

Those plans sound good Trumpton, well apart from the mastectomy but that's a necessary evil.

zorgo I was on the same treatment regime as you and my HB also dropped mainly I think as a result of my very restricted diet especially in the last couple of cycles. My appetite went completely so I was eating mainly soup and custard....and believe me I love my food usually.
I started taking spatone liquid iron supplements, though I didn't ask anyone's advice on this. Never any mention of transfusions though

zorgo and yes...memory gaps here too. Specific words in a sentence will just disappear leaving me floundering to get to the end, and names can evade me. My rl chemo buddy says it's to be expected and will get better.

Congrats on finishing chemo trumpton. It is quite a landmark.

@DaisyBD - don't be daft, we're all different! And I'm not travelling for hours for my treatment - that would make you tired regardless. I'm still feeling pretty normal, to my great surprise; the slightly troubled guts being my one and only side effect. That is, if you don't count the self-inflicted extra poundage from treating myself to too many naughty things. Any side effects usually appear after around two weeks, so be kind to yourself, and fingers crossed you escape the worst.

Only 3 more sessions of external rads to go (22 done - hooray!), then the brachytherapy Friday/Monday which I'm ever so slightly dreading (but it'll be fine). Am also seeing the oncologist on Tuesday, where I will find out a bit more about any follow-up.

@Trumpton - I agree, it does feel weird, on the home straight, and I haven't been at it as long as you. Some of the radiographers and receptionists are becoming familiar faces. But I won't miss having to watch sodding Bargain Hunt in the waiting room every day.

@Nonotmenori - Tuesday - wow, that's come around quickly. Will be thinking of you.

And hello to new folk on the thread.....

Hi everyone, a newbie here! It great to hear some positive stories and support for everyone going through a difficult time.

I was diagnosed with triple negative breast cancer in November. I signed up to a clinical research trial but had a delay in starting treatment while I waited for additional scans to make sure it hadn't spread beyond on my breast and nodes, which it hadn't. I started my 2nd cycle of chemo yesterday. I have another 5 cycles to go followed by a mastectomy then radiotherapy. The good news is that following the 1st cycle of chemo has already resulted in an improvement to texture of the affected breast.

I've been using the cold cap and struggling with it (I'm having weekly paclitaxel). I now have to be sedated to use it. It's done a great job until today where I've lost lots of hair and now have bald spots. My wig consultation isn't until a week Wednesday, which is the earliest they can get me in around my bi-weekly hospital appointments. I'm still working so it looks like I'll be getting creative with my hair styles for the next couple of weeks

Sorry fell off the board this week and only just trying to catch up. I’m joining many of you in a tough week and many tears shed here.
Had my third round start on Friday last week with my infusion and had my first throat spasm (can’t remeber the official name of it). Which wasn’t fun and completely freaked my sister out. My legs get worse each time and could barely walk too the loo at one point as my legs just would work and getting over crawling up the stairs for 5 days after each infusion.
Tuesday night I rang McMillan hotline he said to hang up and call ambulance cause I had abdo and chest pain. 45 minutes of me in agony and ambulance arrived and then 8hrs in A&E before seeing a dr. Thank god the nurse hooked me up to something to stop the pain after about an hour of arriving. They sent me home at 5am and told to come back next day for further investigation. Went back and sat there for 6 hrs before being seen to be told I need a ultrasound of liver but since it’s now 5pm they can’t do it today will have to come back again. If I wasn’t feeling so awful I would have screamed.
Been crying so much this week as I just feel crap and I don’t know how I’m going to make it through another round. And also feel shit about feeling like that cause so many people have had far more rounds than me and seem to cope better. My veins of gone to shit so each blood test involved being stabbed at least 5 times and I’m just so over it all. I don’t want to do it anymore.

So sorry so many of you have also had a tough time this last week.
And welcome to the new people on the thread.

@Squiffy01 oh man that just sounds so grim. i’m really sorry you’re having such an awful time, i hope things pick up for you soon. this is just all so crap and i know how you feel not wanting to do this any more. i’m not having such a tough time as you physically but my head is full of cancer all the time (not literally, it’s in my back/arse but you know what i mean).

@CointreauVersial i’m glad it’s all been manageable for you. my guts are shit anyway so i’m hoping they won’t get any worse. we’re going away next weekend and i want to be ok then. that’s the furthest i can look ahead to.

Welcome to barberousbarbara - it's a shit situation to be in, but you will get amazing support here.

Squiffy, that sounds fucking horrendous!

@Squiffy01 I do hope you are comfortable now

@barberousbarbara hello and welcome to the thread. I recently finished 12 weeks of weekly Paclitaxel. I found the effects to be cumulative and it's a bit relentless. Three weekly chemo seems to be tougher but peole often have a "good" week. I didn't cold cap because I didn't want anything that would add to the stress. My hair started to shed about week 4 and I shaved it to a No1. I regretted this because it never actually all fell out and I suspect I could have got away with it.
I do have an enormous collection of hats as well as 2 wigs. My wigs are lovely, very close to my real hair but I loathe wearing them and only wear them when going out in public, not for hospital appointments. I have found certain hats better than others. These are some favourites. I ordered two last week and they arrived very quickly.

Hello barberousbarbara. People here are beyond lovely and helpful. It's very good news that your BC is contained and hasn't spread anywhere. Keep posting here, it really helps x

BitofFun thank you so much for your kind posts upthread, really helpful and supportive. I've always admired your kind and levelheaded replies on Mumsnet so I feel a bit awe struck to 'chat' with you here. You didn't come across as glib at all. I know my prognosis is supposedly very good, but it's hard to trust when they assured me that my biopsy didn't need worrying about. I will feel better after the lumpectomy when they will know in much more detail what is definitely happening.