Cancer Support Thread 98: support for those diagnosed and going through treatment

[FcukBreastCancer]

Hello 👋

Yes you can do it 💪 but tell docs how you’re feeling so they can help you. Top of the cliff is right, it was rhe same for me : first week..bad..second better third was fine . You’ve ‘just’ got to get through three more sessions …it will be worth it in the end xx

I’m so sorry I don’t know.. its awful for you having to wait like this though .I dont suppose the GP can help? Sending best wishes xxx

Completely different area but my genetic testing was sent off to a specialist hospital and was told 13 weeks wait. It wasn’t through my GP either it was through my hospital,

if they’ve told you 4 weeks I would check back with GP but also ask at hospital eg reception or a specialist nurse number if you have one to find out if results have come in and when will you be told. I’d try and chase up with everyone so at least you’re given a date. If possible, I know it’s easier said than done!

Hello all! Hope everyone is doing as well as they can.

Had my 1st oncologist appointment yesterday.
I’ve been offered a trial. It’s this.
has anyone else had this?
ive still got to wait another 4-6 weeks for a CT scan and then 2-3 weeks after that for my radio to start.
its 11 weeks Monday since my surgery!

Hi how is everyone getting on? @Ventress how did the ct scan go? Are you feeling any better today ? @Bangersndmash how is the fucker EC treating you? @Sbmpp and everyone else hope you are ok. Sending best wishes and sunshine from France where I’ve managed to do quite a bitof housework and make a stew this morning. Did hair and make up to go out ( DH is out helping paint new baby’s bedroom 🥰🥰) but the sofa beckoned me and now I’m glued to it. I want my energy back please xxx

@Nonamelass I’ve been thinking about you and was going to post a note this morning. How are you feeling? I am finally recovered from last chemo just in time for next Wednesday 🤷🏻‍♀️. I’m thinking this must be dose #16? It’s catching up to me. @Bangersndmash How are you doing on the EC? I don’t think that’s a drug used in GI cancers. From what I’ve read here it sounds horrific and I have hugs, loves and strengths to all of you. I hope you all have a lovely evening. @Nonamelass Roast always sounds wonderful!

Hi all, sorry for the radio silence. I’m hanging on in, just about. Taken me a week to be able to not feel nauseous and finally eating but now the last few days, mouth ulcers have sprang up everywhere. I’ve got about 8 in total currently. I’m taking so many things and ringing the chemo unit tomorrow to ask for a bit more help as it’s giving me so much pain I’m really hungry and now struggling to eat.

my hair is also really starting to fall out a lot on my head. My eyebrows look awful, I tried drawing them on today.

I feel like crying thinking I’ve got to have this again in two weeks. It’s really, really putting me in the gutter.

BUT, I had a lovely day today, I’m not feeling sick at least now and I spent the day running round after my kids and had a day out at the farm. And trying to think of the end goal.

@Sbmpp round 16, you’re doing well then. I feel you deserve a big clap on the back. @Nonamelass sofa day sounds wonderful, I hope you had sufficient snacks!

@ohdoriswheresthesalad i think radiotherapy is quite common for treatment. I was told I would be offered it, if I need it (most likely) after chemo. Everyone’s treatment will vary depending on their diagnosis but a few people in this group have mentioned they’ve had radiotherapy.

@Bangersndmash well done for getting through - can you ask them to adjust your anti sickness medication - I was given Akynzeo for anti sickness pre chemo and it lasts 5 days - well 4 actually with me but it helped so much.
Also you could ask for a reduction in dose.
I am sorry you are suffering with the mouth ulcers - I think they can prescribe something to help - because my dose got reduced it was one side effect i didnt have.
You are doing an amazing job coping with children too.

It wasn’t that I wasn’t expecting radio, I was. It’s the timeframe I’m worried about. If it goes in the direction he said it’ll be nearly 20 weeks since surgery that I’m having any treatment radiotherapy wise. I only stated tamoxifen on 5/3.

@cantbelieveIamhere thank you. Yes I am definitely going to ask for more anti nausea before the next treatment. Currently sat waiting for a prescription for my mouth ulcers.

@ohdoriswheresthesalad sorry I’m confused. Are you concerned it’s too long a wait? And you started your treatment before you even saw oncology??! Can you explain your time scale and then maybe I could help give you an example of my time scale or something similar. You can always advocate for yourself if you feel things are going too slow, but they might be waiting for a reason… if you’re already on chemo?

@Bangersndmashsorry I’ve probably confused you!
ok so
4/12/25 - diagnosed
22/12/25 - lumpectomy
15/1/26- all margins done, 1 lymph node has disease. Onoctype sent off.
28/1/26 - Oncotype score came back, 13. no chemo. Was told they would refer me to oncology.
5/3/26 - first oncology appointment, was offered trial of the fast track boost for radiotherapy.
5/3/26 - started tamoxifen

xxxx

Hi all. I’m not sure what’s going on in be honest! I going to let DH reply to all of my WhatsApps as I’m in not doing replying! My son is replying to messages but I’m not sure it’s that good! I had a cf scan at the weekend which was fine. I have horrid bruises on my hands which I can live without!

I have another appointment today so will see how that that goes. DH has emailed the breast cancer specialist nurse. I am wrecked. I hope you guys are doing better than me! I am going to have some crumpets for breakfast 😊 yum.

@Ventress Oh Ventress I’m sending you a big gentle hug. I hope you get the answers you need quickly. Enjoy those crumpets (I’m not sure I’ve had them before but I think people eat them with jam and some kind of cream?)

Checking in so I don't loose you all.
I was previously posting as fcukbreastcancer.

I've had a bumpy ride. Had some kind of reaction to tamoxifen and had to stop it.
Now been diagnosed with frozen shoulder and referred to orthopedics

Radiotherapy burns have healed but one boob still heavy and a size bigger. And I thought the cancer boob would end up smaller! Hopefully some shrinking will still happen

Will catch up on thread tomorrow

@Ventress Hope you’re doing ok. I’ve had an extremely rough week since chemo last Wednesday. I see my oncologist tomorrow. Was up since 0300 with n/v/d. You gotta love it. I hope everyone is well. Are you ok nonamelass?

It's been a while since I've posted, chemo and radiotherapy finished 28th October for head and neck cancer that had spread to my lymph nodes.
Recovery is still ongoing, the worst is done but things like fatigue, shoulder and neck tightness as well as trying to move again and rebuild some of the muscle lost.

There's been complications along the way, the most recent was an ENT consultant who failed to read my notes and didn't realise my cancer had spread so didn't organise scans. My lovely Macmillan nurse pushed for these. What should have happened at 16 weeks post treatment wasn't even requested until 20 weeks.... however finally I have the results at 8pm last night and there are no signs of cancer.
I'll still need checks every 6-8 weeks but for now, I really can focus on recovery and not wandering if every pain and side effect is the cancer still

I do hope you all get through this horrific journey because it's absolutely exhausting physically and emotionally. Sending you all my love and well wishes

@ForestFlowerFairy - so lovely to hear good news after all you have been through - you are right it is exhausting in every way - hope you can start to recover your strength back now.

@ventress sorry to hear you are feeling rough. I hope your appointment went ok today.

Hello how is everyone?
@Ventresshow you doing?

Hello everyone. It’s looking like I probably have malignant nodules in both lungs after a CT scan last week. I was wondering if anyone has had lung cancer on here?
I am 72, have had heart failure following myocarditis since 2019, and my steadily increasing breathlessness over a year or so has been put down to my heart. I was sent to ambulatory care by my GP 3 weeks ago, had bloods, ecg and chest X-ray, told nothing untoward except something on X-ray that the doctor thought was ‘ends of blood vessels’ (seriously?). Anyway I had the CT a week later and ground glass nodules are evident in lower right lung, one in upper left lobe.
I have an appointment with the respiratory clinic on Tuesday next week.
I feel weirdly unfazed, I’m an ex smoker, retired nurse and just wondering what happens next.
I’d be grateful for any advice, thanks x

Hello @Tiddlywinks63. Not lung cancer, but had masses seen on CT in my lungs which turned out to be another cancer. I should think your nursing knowledge will be a help to you in this situation. There is a lot of uncertainty and i would encourage you to take one day at a time. I hope that you have a few supportive family members or friends you can talk to as well, which I have found invaluable. Wishing you all the best.

Hello @Tiddlywinks63 and welcome to the lovely thread nobody wants to join.
I am a retired GP and survivor of two breast cancers.
This first stage of cancer is the worst. You don’t know what is happening or what the prognosis is likely to be. There are lots of tests and delays in finding out results or getting appointments. The admin takes up all your head space. I was reassured that it gets better once the picture is clearer. Knowledge is Power! Then you can start working with your oncology team to treat the treatable and manage the rest. Meanwhile it will help to stay busy, do practical jobs like stocking the freezer and weeding the allotment in my case! I used the Calm app but some here have asked for anxiety medication from their GP to get them through. There isn’t a right way to be a cancer patient, it is whatever works for you. I hope you have someone to lean on, but there is always somebody here to chat to. Sending best wishes .

Well, the kitchen’s clean and tidy, the living room’s been attacked and I’ve sorted out my next crocheting project, I’m on a roll and getting scared….
I’m not sleeping well but gp won’t prescribe anything because of my breathlessness 🤷🏼‍♀️
I might just need a g&t later….
Lovely sunny day x

So….multiple nodules both lungs, some of which are of mixed ground glass/solid appearance and these have grown, highly indicative of malignancy.
To have PET Scan, biopsies and probably chemo/immunotherapy, not curative.
So, here we go…..