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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

Cancer Support Thread 97: support for those diagnosed and going through treatment

1000 replies

LiliJilliBobs · 11/06/2025 05:32

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

OP posts:
Thread gallery
16
dancingwhilstfacingthemusic · 19/07/2025 12:21

@LiliJilliBobs it is scary but doable one day or part of the day at a time.

@AlwaysALargeSauvignonBlanc bugger, but not a surprise, I think. Take it steady and mark off each treatment at a time. You can do this (& buy some fruit sherbet sweets - m&s do a nice packet).

@SummerShimmer well done. Rest up, move about a bit and hydrate a lot. Don’t forget those exercises.

ForestFlowerFairy · 19/07/2025 13:26

I feel like I'm in a strange position
I had a scan due to enlarged lymph nodes, one didn't look as it should so I had an ENT referral. He said he wasn't concerned but it should be biopsied to be sure.
I was called in a week later, on the Thursday he did a further exam, discovered one tonsil was larger than the other and told me the biopsy showed abnormal cells, but they didn't have the full results so can't say if it's cancer or precancerous.
Everything happened really quickly, MRI Sunday, CT scan Tuesday and tonsil removal plus further biopsies were taken.
The last 1.5 weeks recovery has been horrible thanks to a post op infection.

The next steps are the MDT discussing my case, logically I know the results take 10-14 days, they only meet on a Wednesday, so it's borderline if they discuss my case next week.
Yet they will have the lymph node results by now, they should be able to say if it's cancer or precancerous - which from what I can tell is the difference between the surgery and monitoring V surgery and further treatment.
At least whilst I was in pain I couldn't think about it, now it's all I can think about.
I hate the wait, I just want to know what I'm dealing with

gillybean2 · 31/07/2025 16:48

Not posted for a while. Those who joined the previous thread around the same time as me seemed to be moving ahead with their treatment much faster than me and I was getting somewhat frustrated with the delays in my treatment starting.

Current position is I am waiting to be referred back to oncology for RT. My surgery was after chemo and has been a month now since that went ahead. Ended up having one less round of chemo than originally planned as the number of lumps kept increasing and spreading and I wasn’t convinced another really tough round would have much effect and they agreed.

Needed skin grafts to cover the area removed and am currently going back regularly to have dressings changed and to see the plastics consultants. It was a bit icky for a while but looking better now. 70% of the graft has taken with 3 island areas which they are giving time. Most annoying thing is not being able to have a proper wash/shower as I can’t get the area wet.

Pathology showed a good clear margin around the removed skin. They opted for a simpler op as I was so unwell after the chemo. So they partially remove the previous reconstruction as the cancer was only in the breast skin. Meaning I’m not totally flat but nothing like a breast shape. They’re hoping it will make the RT a bit easier as there will be a cushion of the remaining reconstruction fat.

My breast consultant has signed me off and doesn’t need to see me again unless I have any concerns. So just waiting for oncology now which will be at least 3 weeks as my oncologist is very busy but they want me to see the most senior one as I’m ‘complicated’.

They also mentioned some new mediations to suppress oestrogen which they’re going to look into as the side effects may not be compatible with another condition I have. Does anyone have experience of Abemaciclib (Verzenios)? Previously I was on tamoxifen.

TopOfTheCliff · 11/08/2025 15:46

@ForestFlowerFairy have you had your results yet? Thinking about you x

@gillybean2 have you got a Clinic date yet? I found the oncologist was running to an agenda with a list of topics to cover and it was a lot of information to take in. I got lots of useful leaflets to look at once I got home with my head reeling. It sounds like you have had a really tough time and it’s still ongoing for you. Hope you are healing well.

ForestFlowerFairy · 11/08/2025 19:36

@TopOfTheCliff yes, results are back, tonsil was cancerous and it's spread to my lymph nodes.
Currently having what feels like a million different appointments with specialists to get things in place prior to radiotherapy - today was the dentist, and the great news is no extractions needed (yippee)

I do feel ridiculously calm right now, whilst I know treatment isn't nice I just don't feel worried
Everyone has said it's early, prognosis is good, they are going for a cure etc etc.
Doesn't feel real yet

TopOfTheCliff · 11/08/2025 19:39

@ForestFlowerFairy I am so sorry to hear that news. It’s good they are being positive about your prospects. I remember seeing Radical Curative Chemotherapy written on my consent form and being weirdly comforted.
Is radiotherapy the main mode of treatment?

ForestFlowerFairy · 11/08/2025 19:50

It is yes, 6 weeks of radiotherapy 5 days a week, alongside chemo 1 day a week for 6 weeks

They have gone through what feels like a million side effects and what to expect - weirdly getting a prescription for toothpaste today and being told I'll need this prescription forever upset me a little.
I keep telling myself it's just 3 months then it's all over (6 weeks treatment, 3 weeks for symptoms to worsen and 3 weeks rest before back to work)
Yet the toothpaste forever is longer than 3 months and I don't like that

I do worry I'm a little flippant about this and may offend someone whose been going through this so much longer or is struggling - to anyone reading this that isn't my intention at all

TopOfTheCliff · 11/08/2025 20:04

It’s okay to feel how you feel. Don’t minimise your situation and think a short course of treatment will be easier to bear than a long one and you don’t deserve sympathy and understanding. It’s not a misery contest! To be honest the aftermath of treatment (in my case numb hands and feet, arm swelling and tissue damage from radiotherapy) can be hard to bear once you have got over the fear of dying soon. We are all different and our course of treatment is always unique to us. I guess the weird toothpaste will become your new normal.

Poledra · 12/08/2025 00:37

Ach @ForestFlowerFairy it's the strangest things that get you - I can totally understand the toothpaste thing! I was on the last thread, and have now completed my chemo and radiotherapy, and so far, have the best possible prognosis I could have had. It's taking longer that I like to recover from it all bug it's slowly getting better. Even my hair is coming back (something that distressed me more than I care to think).

Be as flippant as you like - each of us copes with things in the way that suits us best.

ForestFlowerFairy · 21/08/2025 11:48

First radiotherapy appointment is booked for the 5th September
Also my 10 year wedding anniversary - were taking the "in sickness" part of our vows to the extreme!

Ohjoyohbliss · 28/08/2025 20:23

Hello, ok if I join the club no-one wants to be in?

Officially diagnosed with stage 4 diffuse large B cell lymphoma today, although I'm aware that stage 4 lymphoma isn't necessarily as bad as stage 4 solid tumours. Chemo starts tomorrow and I'm told I will definitely lose my hair.

It's very long and I would like to donate it to charity. Does anyone have a link for this? Does anyone know how quickly the hair will fall out? She said "quite quickly " but is that hours, days or weeks?

Also, can anyone recommend some nice turbans or scarves etc.? I fancy something a bit boho/ hippy style rather than old lady-ish.

And what about wigs? I think I would probably like one and would be OK with synthetic as I believe human hair ones are more of a faff to clean and style.

Any / all advice gratefully received.

thesandwich · 28/08/2025 21:00

Hello, just popping in to suggest https://www.littleprincesses.org.uk/donate-hair for donating hair @Ohjoyohbliss
Etsy have lots of hair coverings/ hats- your nurses will tell you how soon to expect to lose your hair- or opt to have it cut/ shaved in advance.
I also recommend look goof feel better charity.
Good luck with it all

Donate Hair to the Little Princess Trust

Donating your hair? Don't forget to order a free LPT fundraising pack and help us turn your hair donation into a beautiful wig!

https://www.littleprincesses.org.uk/donate-hair

Ohjoyohbliss · 28/08/2025 21:14

thesandwich · 28/08/2025 21:00

Hello, just popping in to suggest https://www.littleprincesses.org.uk/donate-hair for donating hair @Ohjoyohbliss
Etsy have lots of hair coverings/ hats- your nurses will tell you how soon to expect to lose your hair- or opt to have it cut/ shaved in advance.
I also recommend look goof feel better charity.
Good luck with it all

Thank you. I've never used Etsy and don't know where to start.

TopOfTheCliff · 28/08/2025 21:35

@Ohjoyohbliss sorry to meet you here.
My experience was that my hair fell out about 15 days after the first dose of chemotherapy. I used AnnaBandana headgear, and got a nice free wig on the NHS which was lovely and warm in winter but too hot in summer. I actually preferred wearing beanies after a while.

How are the rest of you getting on with radiotherapy and chemo? It’s very quiet here at the moment.

thesandwich · 28/08/2025 22:21

https://www.etsy.com/uk/market/chemo_headwear Have a look

Poledra · 28/08/2025 22:23

@Ohjoyohbliss sorry to meet you here. I had my long hair cut short before I started chemo, as I was definitely going to lose it. It started to fall out at about 15 days after first chemo, as @TopOfTheCliff said. After my second chemo, my teenage daughter shaved it off for me as it was falling out in clumps. Surprisingly, we laughed a lot as she did it!
I also used Annabandana and Hats 4 Heads. McMillan had a support person at my local.hospital, and she had loads of hats/wraps for you to try, which was really useful in helping me see what I liked before I bought some myself. My DDs and I also named the different styles to amuse ourselves: I had the Captain Jack Sparrow, the Russian ballet teacher, the Trust-fund Boho etc

Poledra · 28/08/2025 22:26

Oh, and I never bothered with a wig - just not my thing. I was devastated to lose my hair (I wailed about it on the previous thread and got lots of lovely support) and in a weird way, I didn't want to replace it but just to go for a big FU to the whole thing. If it made people uncomfortable to see me with no hair, that's their problem.

LiliJilliBobs · 29/08/2025 09:32

Sorry you’ve had to join this club. Really hope your chemo goes well today and that your side effects are minimal.
Sending positive thought and hugs xxx

I can’t give any advice on chemo and hair as I have lobular BC and my oncologist has not recommended it as my cancer type doesn’t respond well to chemo, so it’s straight to radiotherapy for me.
I have to admit that my hair is definitely falling out with the letrazole tablets I’m taking, it’s either the tablet or stress!
not having chemo makes me worry that cancer might be lurking somewhere and it’s not being targetted and destroyed.

OP posts:
ForestFlowerFairy · 29/08/2025 09:43

I'm in hospital today for a RIG to be fitted ahead of starting chemo and radiotherapy, it's the one element I'm really dreading - I can't explain why today's procedure scares me the most.
I was supposed to start chemo and radiotherapy 5th September but we've decided to delay a couple of weeks for emergency fertility preservation, we're hoping (praying) we may get a few viable embryos to freeze ready for when we get the all clear.
Its a crazy time - everyone keeps saying once I start the next bit it'll be routine and easier
I'm also hoping my GP pulls their fingers out with insurance forms, I've used all paid sick leave, almost exhausted my annual leave and the GP won't sign off the insurance forms that will actually cover my loss of wages as they have 28 days to do so, and the receptionists refuse to chase until that deadline has passed.

Has anyone else found a solution or way to stay calm about finances?
I thought having the insurances etc meant I wouldn't need to worry and yet I'm fighting that battle as well as balancing treatments and work

@Ohjoyohbliss sorry you've joined the club, I've been reading your other thread. I'm pleased they do know what they are dealing with and can start your treatment - being at the start of all this like you in afraid I've no words of wisdom

Ohjoyohbliss · 29/08/2025 14:27

@Poledra Annabandana and Hats 4 Heads look good so thanks for that.

I've seen the McMillan lady but they are extremely low on stock so hardly anything to choose from. Like literally less than a dozen in stocks and they don't know when they will get more.

Ohjoyohbliss · 29/08/2025 14:34

@LiliJilliBobs
not having chemo makes me worry that cancer might be lurking somewhere and it’s not being targetted and destroyed.

I would be anxious about that too, if I were you. I hope that the radiotherapy does the job. Presumably blood tests can help to show if anything is still going on afterwards. Good luck with it all.

Ohjoyohbliss · 29/08/2025 15:39

thesandwich · 28/08/2025 21:00

Hello, just popping in to suggest https://www.littleprincesses.org.uk/donate-hair for donating hair @Ohjoyohbliss
Etsy have lots of hair coverings/ hats- your nurses will tell you how soon to expect to lose your hair- or opt to have it cut/ shaved in advance.
I also recommend look goof feel better charity.
Good luck with it all

Little Princess Trust won't take my hair because it's over 10% grey.

LiliJilliBobs · 29/08/2025 15:52

@Ohjoyohbliss I don't get the impression they are going to do any scans, tests etc.
I've mentioned a few aches that i am concerned about and both the surgeon and the oncologist disregarded them - stating that the cancer wont have travelled as you are in the early stages and it has been caught early. Cant help worrying

OP posts:
Ohjoyohbliss · 01/09/2025 21:05

LiliJilliBobs · 29/08/2025 15:52

@Ohjoyohbliss I don't get the impression they are going to do any scans, tests etc.
I've mentioned a few aches that i am concerned about and both the surgeon and the oncologist disregarded them - stating that the cancer wont have travelled as you are in the early stages and it has been caught early. Cant help worrying

I don't want to say "can't you just ask them to do x, y or z" because I've had so many people saying that to me, and it just doesn't feel like it works like that, but please do discuss your fears with as many clinicians as you can, at every opportunity. Good luck.

cannaecookrisotto · 01/09/2025 23:11

Hello All :)

Never thought I’d be in this situation but here I am. It’s strange, I never thought it would happen to me but why would it not happen to me? It’s like a raffle that no bigger wants to win.

Anyhow, I’m 34, had my 2nd daughter in March this year. My breasts engorged after stopping breastfeeding and once they’d deflated, left breast was left with a large lump. Literally appeared overnight, 10cm. I’m not even exaggerating so I thought it was some clogged milk. Did the old heat compress, massage, didn’t go down and was sore.

Went to GP in May, sent home with Naproxen and told to come back if it didn’t resolve on its own. GP didn’t seem concerned so neither did I, I went back to GP beginning of August as it was in my way and was getting stabbing pains.

GP says she’s sure it’s a Galactocele (sp?) but because of the size of it she referred me under 2WW.

Got appointment, saw consultant, they did ultrasound, were ready to aspirate then said it was solid, just a small bit of fluid near the centre. Sent me down corridor to a consultant radiologist who thought it was Galactocele as well but did some core biopsies to err on side of caution. Even letter to GP said it was a bloody suspected Galactocele. Been even more painful after biopsy, leaking fluid, had abx for suspected infection.

Went back today, first words out of the consultants mouth were that it’s cancer. My poor mother nearly ended up in resus and I was just gobsmacked. They said they were as shocked as us.

They’ve said it’s triple negative breast cancer, grade 3. I am now waiting for scans and the other tests for staging and to see if it’s spread. They’ve said chemo first then surgery. The consultant had a good rummage in my armpits and said he didn’t feel anything and to take as a good sign, with the caveat that he’s not a human ultrasound.

I don’t know how I feel. I feel sorry for my mum because she was trying to hold it together for me but she was in pieces. I get it though, if it was one of my kids I’d be the same hearing that today and how stark it sounded. We attended the appointment fully expecting to be told how they were planning to treat this giant milk rock to being told it’s cancer.

I have 2 girls, an 8 year old and a 5 month old. DH is horrified but he’s gone into planning mode, told his boss and agreed to reduce hours etc etc. I’m self-employed as a regulatory consultant and plan to keep my nose in work as and when I feel able to. I only need to do a few hours each week to cover the bills so I recognise how fortunate I am in that regard.

I don’t know how I feel at this moment. I’ve sent everyone to bed because I need time to process. I’ve had my game face on all evening as I don’t want my 8 year old suspecting anything, at least until I know what the score is and plan of action.

I’m swinging between “be positive” and crying thinking that I’m not going to see my girls grow up.

It’s this waiting game to find out more, I’m only on day 1 and I already feel like I’m losing my mind with the not knowing.

I’ve read through some of these threads before posting here tonight and you all sound really brave and supportive. I’m hoping that some of your courage will rub off on me too.

Big hugs to all, it’s truly a feeling like I’ve never experienced. We hear of people getting cancer and it’s always awful but hearing you have it yourself is truly a fresh kind of hell. I’m not googling anything even though it was my first instinct. I’m shit scared of what I might read and I don’t even know the full picture yet, so best not to go down that road. I’ll end up having a bloody heart attack!!!

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