Cancer support thread #82

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

@Silkierabbit I too am fascinated by your frozen peas experiment! As you may know, I’ve cold-capped throughout. On the 12 dose/week carbotaxel regime, I lost barely anything, but on switching to the EC (4 doses, over 12 weeks) it started to come out in great handfuls around 14/15 days after the first dose. I then had it cut to chin-length (it was collar bone length previously) and that seemed to slow it down. I would estimate I’ve lost around 40/50%, difficult to say. The cold cap has varying success rates so I’d love to hear how yours goes! I hope your chemo today goes ok, and everything settles down for you. It’s bloody gruelling isn’t it. Good luck xx

Sending love and ‘have a good week’ wishes to everyone xx

Hi everyone, I'm sorry I can't offer any help of advice about your BC journeys, but I am reading everything and wishing you all well.

After my big pain last Tuesday with the ambulance call out my surgeon wanted to admit me on Friday for a full assessment and scan but I knew that would mean staying over the weekend while they organised it so I refused. But yesterday I woke up in agony again, a different kind of pain only 5/10 but it lasted for 8 hours and that was after tramadol and Oramorph.

I have agreed to go in to be scanned and they are trying to organise it for tomorrow so I don't have to stay in overnight.

I got some of my results from the testing, it's been confirmed as a low risk GIST and they definitely got it all out with the surgery but it now been sent away for mutational testing which is important because if it does come back certain kinds of GIST have no drugs that work on them, Exon 11 for instance can be shrunk with Imantanib but there is no chemo available because they are so rare.

Love to you all x

Please may I join in your thread? This morning I was diagnosed with breast cancer after being called back from a recent mammogram and undergoing a biopsy. They think it’s stage 1 but can’t be sure until I have a lumpectomy and lymph node removal. Feeling a bit she’ll shocked

I've had a diagnosis today as well of endometrial cancer, also feeling very shocked, no history in the family of cancer and I thought I was low risk. Grade 1 apparently, having an MRI this week for the staging, I know it's probably very treatable, but my head is spinning with how to manage work, who to tell etc. I don't have a partner (though have good friends but they're all at work) so feeling a bit alone with it.

Welcome @Mycatispretty and @SierraSapphire to the thread no-one wants to join. Pull up and chair and let us share the load.

This first few weeks are absolutely the worst time, it’s waiting and not having all the answers that make it so hellish. Once your treatment plan is decided then things do become easier.

@Mycatispretty welcome
@SierraSapphire I'm single too and I have been through the last few months without a partner but my friends have been amazing, I was really nervous about sharing to begin with (I had a very rare duodenal cancer called a GIST that was removed with a Whipple procedure which is a very extensive major abdominal surgery that'll take 6-12 months to recover from). In the end I told several friends and then set up a whatsapp group for while I was in hospital to update everyone, I was in over 5 weeks and even now I'm home it's proving to be a great way not to leave anyone out of updates. I probably have about 25 friends and family on there. I deleted a load of not great friends from social media too which felt good despite the fact I don't post very often, I just felt more private all if a sudden

Any questions, just ask, so much experience on this thread if all kinds of things, you are certainly not alone

Thanks @MissSmiley a WhatsApp group is a great idea. It's difficult to know what to ask at this stage. I'm told a hysterectomy is usually done within 4 weeks, but just want it whipped out now really! My 19 yo DD will be home from work in about 4 hours, dreading telling her, though she works in a GP surgery, so she's fairly knowledgable. I don't feel I can not tell her though.

@SierraSapphire I have five teenagers and my advice is to be honest with them from the beginning, my kids got the gist of what was happening over Christmas and one had googled it before I had a chance to tell them which meant he worried for several weeks unnecessarily. It's really hard but try to be positive with your daughter, my kids have been very kind and understanding.

@MissSmiley

So sorry you've had pain again. Is it in a different place? Just wondering if it's a clump of undigested food in transit down your colo-rectal system which could be controlled with diet? Or something not working higher up. Not entirely clear what you've had removed. Hope they find out soon.

Every time I read your posts, I feel like sending the surgeon who spotted my GIST a bottle of something good. Never got the chance to thank him. I think he still had L plates, tho' it was Alpha doc, of course, who decided to make a detour and add an extra 2 hours on to planned surgery - and mess up everyone else lists. Do you happen to know what percentage decide to mutate from harmless mitotic rate of 1 to malignant tumour? Or if you've had one whether there's a raised risk of getting another one somewhere else? Not that I need another reason to worry about the odd twinge.

Entirely understand your reluctance to go back in. I couldn't sleep or eat on my ward. I was on a low fibre diet but the only thing they could come up with was 'chicken' broth which smelled so strongly of onions my gullet snapped shut before it even reached my bed. Apparently the kitchen didn't do eggs. And yes, they had no bananas.

Best wishes to everyone else. As always. Top l hope the weather warms up for your adventure.

Thanks for all your suggestions @MrsPnut, @Acinonyx2, @TwoBigNoisyBoys and everyone else who has given me very welcome advice.

I'm going to get a bag ready and take a lot of the things suggested but I'll probably give the frozen peas a miss @Silkierabbit but it was entertaining to read and imagine your efforts to cold cap. Our hospital doesn't offer cold cap but having washed my hair this morning, I realised that I've lost a good two inches from my hair line so it's very far up to the top of my forehead which is all down to stress I think. So if I feel ok next week I think I'll find a hairdresser to just shave it because I'd rather control it myself that have the rest of my hair betray me and fall out of its own accord! I'm also a whole eyebrow down and all my underarm hair has now gone.

Anyway, I managed to get hold of someone at scheduling this morning but there's nothing that they can do now so I'm just going to have to go with the flow. They did apologise for not having sent my treatment plan out and will have one ready for me on Wednesday morning. To my shame I burst into tears (most unlike me) and blubbed for a bit so they did agree that my PCR could be done by them when I have my blood test which will help with parking costs at least.

@Thymeout someone sent me a chart with a risk of recurrence based on the size of your tumour, the mitotic rate and the location, where was yours and what size was it? Was the mitotic rate less than 1?

@MothralovesGojira sorry you are going through this… small thing but you should get free parking as a cancer patient? Everywhere has different systems but worth checking…. Ours you exchange the token in the chemo unit.

@thesandwich

Yes, you would think that free parking would available to people receiving cancer treatment but not at our hospital. You can get half price parking if you are receiving treatment for more than three days in a row but otherwise you are expected to pay unless you meet certain criteria like having a prescriptions exemption certificate due to qualifying on tax credit grounds - not even being on UC/ESA/PIP gets you a parking concession in our neck of the woods! Our hospital's nett parking takings regularly exceed £1 million per year and even the staff pay. I live some distance away from the hospital so it's a journey of two trains + a bus. A taxi is £40 each way so have no choice but to go by car but the minimum parking fee is just under £4.
To be honest the whole health authority is bad. I had awful trouble getting my prescription exemption form accepted at the doctor surgery because they told me that I had to wait until I actually had a prescription from the hospital before they could send my form off (bloody liars!). After a 20 minute discussion where I had to threaten to complain to my MP because they were withholding my legal entitlement to the certificate, they finally agreed to sign it and forward it on.
Good lord, my journey sounds like a "what can go wrong will go wrong" type of affair!

Oh @MothralovesGojira I’m so sorry… I thought it was a national thing
You certainly are having to deal with extra crap. . 🌺🌺🌺

@Mycatispretty

I'm sorry that you're also in this position. I was where you are two months ago. My BC was also discovered on a mammogram recall. I always get recalled due to having cystic breasts so wasn't expecting my biopsy to come back with cancer. I was so used to getting the all clear that when they suggested that I bring someone with me to my biopsy results appointment I completely ignored it and realised that I was in trouble when I was put in the 'room of doom' to see the consultant. Thankfully my biopsy showed exactly what type of BC I had so the breast consultant was able to tell me exactly what would happen (ie surgery, chemo, radiotherapy etc) so I knew what I'd be dealing with.
It does sound like they have caught it early and survival rates for BC are really good so don't panic. Read the info that they give you because knowledge is power and it helps to keep things in perspective. Hopefully you've been given a breast care nurse who you can contact who can offer guidance and reassurance. I had surgery (lumpectomy + sentinel node removal) about 4 weeks after my diagnosis which was tough as I went back to work three weeks later and it was too soon really. Give yourself time to digest your new reality and then give yourself time to heal afterwards. When I got the news I went to see DP at work and then I went to work. I spent the rest of the day at work thinking "fuck, I've got cancer" and then went home and told the kids (all older teens or in their 20's). Try to be kind to yourself and try not to catastrophise too much - just take each day as it comes because this is a slow journey.
I hope that you have lots of support around you. I decided early on to be up front about it and told most people with the exception of a few family members who are 'grief vampires' and they are none the wiser because I don't see them much anyway!

Thank you @thesandwich

Yes, free parking should be a given for certain conditions. Every time I go to hospital and we pay for the ticket I think "greedy twats"!! The hospital's defence is that every penny goes toward patient care but that's a bitter pill to swallow when an hour's stay is £4 and if you're there all day then you're looking at a £15 bill on exit. I will get DP to drop me outside the car park when I go for chemo on Thursday and send DP home to avoid a huge parking fee so if I have to wait on an empty ward inconveniencing them while DP drives back through rush hour traffic that's tough on them I guess.

Thanks TwoNoisy I am not hopeful for the frozen peas on head experiment but it gives me something to do and entertains the nurses. So far no hair loss but its only day 14, 3rd one just had today. They kept it same dose in the end and took bloods again, despite taking them on Thursday. Felt super drowsy and at one point I must have passed out there but came round quickly, think its the piriton overdose.

Our hospital has also charges cancer patients and there is no parking anywhere near the chemotherapy, its around a 30 minute walk each way plus communal lifts at c£4 per hour. We got a fine the first time though that reduced to £30 and it was almost better value when you factor in the lost earnings for DH.

Hope the tests go OK tomorrow MissSmiley

Love to everyone and welcome to the newbies, sorry you had to join us. Sorry its a bit of a zombie message I am having real trouble staying awake. I will be back tomorrow on steriods.

Hello to everyone and sorry to everyone recently joined.

Has anyone had experience of nausea and vomiting (with not a terrible scary outcome from Dr Google such as “brain metastatics”) that has had a cause? I can’t keep anything down now so not my meds especially pain meds and am severely dehydrated, and am fretting for what this means for my planned treatment on Wednesday.

Mowly Sorry to hear that. When I last had that it was campylobacter, I hardly ever get sick, twice in my life other than childhood and both times tested positive for that. May just be a sick bug. Doctor can test to see. Covid can sometimes present in a gastric way as well.

@mowly77 ah you poor thing…there’s a few sickness bugs going round here at the moment, might it be that? Are you or someone else able to boil some lemonade for you to drink? My Mum always swore by that for sickness bugs when we were little and I still do it too, it does help to rehydrate you. Really hope you feel better soon x

@mowly77 if you can't keep your meds down I think you should ask for advice, can you call your nurse, if they can give you some fluids and antiemetics tomorrow you might not have to miss treatment on Wednesday.

Hi all
I am going to catch up on your posts shortly, have had a shocking week or so, not with my health, but with my wider family, everyone seems to have something going on - I've stopped telling people as it sounds like I'm making it all up!!
Anyway, I saw the oncologist today. He said that I only need 4 cycles of chemotherapy - docetaxel and cyclophosphamide. However, 3 sessions of docetaxel and 3 sessions of EC were mentioned before, although that was by the breast care nurse.
I'm trying to trust him!! It's just that of all the ladies I know who have had breast cancer, the least anyone has had is six cycles. He said if it had been 2 mm smaller I wouldn't have needed chemo at all.
Just to refresh....I was diagnosed with a 7 mm grade 3 invasive breast carcinoma during wide local excision. Triple negative. Clear lymph nodes. Genetic testing negative.
I need to just trust him, don't I? Will have radio also.

@TwoBigNoisyBoys that’s a v good idea … flat lemonade was a staple when I had sickness bugs as a kid.

I spoke to my nurse today but she said to take the new sickness meds and antibiotics from dr so I could possibly be in good shape for treatment. That was before I threw them all up again though. I’ll try her first thing see if I can get intravenous fluids and anti sickness and maybe a test to see what this is. Thank you @MissSmiley

@Silkierabbit I would be delighted if it was covidy e.g a discernible cause. Worrying myself stupid it’s a sign of brain mets & the end is nigh. But that’s what being this ill for months with no treatment does for you …

@Serendipity09 can you get a second opinion? Just so you know you can be totally happy with that decision.

I only had 5 cycles of EC chemo but this was ten years ago and only because I couldn’t take the sixth one was too ill. But mine was genetic hence the return - and I didn’t have radio had double mastectomy and then ovaries out. I did everything I could do at the time.

My best advice is that you must be happy with your own decision and be sure you feel it is right otherwise you will fret later. Good luck.