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

[LiliJilliBobs]

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

@cannaecookrisotto Welcome to the group no one wants to belong to. I’m sorry that you have found yourself here. What a shock for you all. I totally understand how the not knowing and the waiting is so tough.

When I was originally diagnosed my first thought was that it’s a death sentence and I wasn’t going to see ds grown up. But there is so much they can do these days.

Do you have a breast care nurse you can talk to about your concerns? If you do then speak to them freely and frankly. They are there to help you get through this and that includes processing your feelings and listening even when you haven’t really got a question. You can also speak to someone at MacMillan. They gave me some really good practical advice and listened when I couldn’t express my concerns or fears to anyone else.

Once you know more details of your treatment plan you might want to ask what the outcome they’re aiming for is. Specifically if the treatment is aiming to be curative.

I was told not to go down a google spiral as there is so much false info and unrelated stuff out there. I suggest if you feel you need to do that then stick to sources like nhs direct which can give info on what your treatment might look like and links to support groups like macmillan etc.

Keep strong, be kind to yourself, and don’t be afraid to ask for help along the way 💐

Welcome @cannaecookrisotto this is a kind place. Somebody told me after my first biopsy that the wait for results and a plan is the hardest part of the whole cancer journey. I scoffed at that but actually it was true. The sheer disbelief, the blind panic, the fear of dying and leaving your DC, it’s truly terrifying and you could go down the rabbit hole googling and planning your funeral. Stay on Macmillan, Breast Cancer Now or the NHS websites, don’t Google, and be reassured that your team will be planning treatment to cure you.
I found learning yoga breathing hugely useful for every stage of tests and treatment. Somehow I got through the triathlon of chemotherapy surgery and radiotherapy in 2020 then unbelievably again in 2022, and here I am now happy and healthy five years on. I had a grade 3 Triple positive BC first time, then a grade 3 Triple Negative BC second time. What are the odds of that?
It Will All Be Fine! I’ve got that on a T shirt now…

Gilly and Top, thanks so much for your replies. It’s really comforting to be around women who have gone through this, makes feel less alone. My family keep telling me we will be positive and get through it together which I know they mean 100%, but it’s still a bloody lonely place. I sent everyone to bed last night so I could just be alone and not put on a face for everyone else. I had a good cry, felt sorry for myself for an hour then swung back into “everything will be ok”. This morning I’m somewhere between the two.

Doctor said most important now is clear CT scans and good response to chemo, so it helped to have it digested into bite sized pieces of smaller worries if that makes sense.

Hospital called today, ECG on Friday (is this to make sure I’m fit and fighting for chemo?) and MRI on Saturday. I’m glad it’s moving quickly and defo prefer having some targets. I’m sure when I’m waiting for the results I’ll be shitting my pants like.

I do have a nurse but I’m absolutely terrified of calling her. It’s like I want to bury my head in the sand. I know I can’t and the more I know the better but I’m absolutely terrified of what I will be told.

And whilst I’m typing this, hospital called back, I’m booked in on 11th Sept for mammogram, ultrasound and clip marker.

What’s scaring me is the size of the lump, it’s literally 7.5cm or 10cm (I forget). But the speed at which it appeared is what made everyone think it was milk blockage. Even ultrasound didn’t cause panic, they only did biopsies to make sure. I asked if the entire lump was cancerous or if some of it is milk and they couldn’t say 🤷🏼‍♀️. How can something that big appear so suddenly? Gah.

Top, I’m really sorry you’ve had to go through this shit more than once. Reading everyone’s stories here of you all getting through, cracking on and living life at the same time is really inspirational to me. I hope to be able to support and comfort somebody in the future in a similar way.

Oh @cannaecookrisotto it sounds like all the tests and appointments are happening in a timely manner, which is great. It can feel like you are being bombarded though. I remember that feeling. The ECG is for a baseline of your heart health, because some of the drugs used to treat breast cancer can affect the heart. I've been having ECGs every three months, because I'm on Herceptin.

Batshit, it’s like I want things to get done but on the other hand every phone call appointment is like “this isn’t a dream and it’s real”. I’m really grateful that they’re not piddling around. I’ve done my share of NHS moaning in the past but I can’t fault them at the minute. I do have private health, I asked if it would be worth using. Consultant said treatment would be the same, and even the consultant doing the treatment would be the same. He said it might be worth using for chemo to have a nicer chemo experience. What on earth is a nicer chemo experience?! Is there such a thing?!

Thanks for the info re ECG, that’s interesting! They did bloods yesterday for liver and kidney function too.

I think i’m having a denial stage, I just googled “how often do biopsies have a false positive”. Apparently not very often, was worth a go 😂.

Have joined this group yet.
May I?

After many months of GP telephone appointments for bowel movement changes, bloating and severe pain, I had a positive FIT test.
CT showed nothing, CT colonography showed polyps, colonoscopy removed polyps and said they looked normal, and then 10 days later I was told one was infact cancerous and margins unclear.
Further full body CT and MRI show nothing else, so far. So looks like it was caught early.

Tomorrow I’m having a high anterior resection, surrounding lymph nodes removed and I wait for results of everything they take out. It should be laparoscopic, without a stoma, unless something goes wrong or more is found.
Will see what I wake up with tomorrow afternoon.

Currently trying not to panic. Easier said than done when I have yet another 2 litres of bowel prep to force down again. And I have PTSD from hospitals and doctors for other reasons.

@cannaecookrisotto I had my treatment privately. I'm not sure there's much difference in the actual treatment, but I always see my oncologist in person, and have regular appointments with him (active treatment finished just before Easter), for example. My radiotherapy seemed to be very quick and efficient, too. My health cover also included six complementary therapy treatments that I could have while in the chemo chair, and ten physio appointments with a physiotherapist who solely treated cancer patients (I lost my appetite and a huge amount of weight and muscle during chemo, so I needed an exercise programme). I also had access to a specialist dietician.

You'll probably have blood tests before every chemo session, as they monitor you closely to see how your body is coping.

Sorry to see new people here @cannaecookrisotto and @OhNoItsAdeno I'm not quite sure where I am on my journey - I have head and neck cancer, mainly tumour was on my tonsil removed start of July but it has spread to my lymph nodes.
I'm waiting on radiotherapy and chemotherapy but it's been delayed a little as we're attempting fertility preservation and hoping to have success freezing embryos. I've had a lot of nagging/concern from family for us choosing to delay treatment by a couple of weeks but I don't think there are any right answers in times like these

I will say the Macmillan nurses have been fantastic on a very practical level - so whilst I can't say how they are on the emotional support level I am very grateful for them so far.

I do hope the coming weeks are kind to you, the amount of appointments and calls feels like a full time job, but everyone assured me when I get in the rhythm of chemo and radiotherapy things will seem calmer

Thanks Batshit, I might ring AXA in that case! I have another appointment at the clinic on Friday with a different surgeon prior to ECG as ive got a few questions so BCN booked me in.

I’m paranoid now that every twinge means it’s spread. I keep getting stabbing pains in my boob, it’s painful. BCN says that can happen after a biopsy but now I’m worrying that the biopsy has pissed the tumour off and something is happening, like it’s causing it to spread. I want to ask this kind of thing, but again I’m terrified of hearing the answer. I’m scared of not knowing but I’m scared of knowing at the same time. It’s a strange feeling. I usually like to know the ins and outs of a ducks arsehole so this is very unlike me. I’ve not even opened the green pack the BCN gave me yesterday 😱.

Ohno, sorry to hear you’re going through this shite, really glad your CT came back clear, this is my biggest fear I think, of being told it’s packed it’s bags and buggered off outside the tit.

Forest, I can understand you wanting to preserve your fertility and if didn’t already have 2 I would be the same. Losing fertility would be a huge blow in and of itself.

@cannaecookrisotto
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.

What a horrendous way to find out. You must be so shocked and horrified.

My experience was different in that my blood tests very quickly flagged up tumour markers but it was agonising weeks of waiting before it was pinpointed as lymphoma and any treatment could start.

I completely understand the feelings of dissociation. The mind plays weird tricks. On my good days, with pain and nausea under control, I've even thought "Am I just faking this for the attention and sympathy?"

All the best for what is to come and I hope the scan news will be good.

@ForestFlowerFairy The fertility issue must be hugely adding to your worries and complicating the issues for you. I hope that all goes well on that front.

@OhNoItsAdeno

All the very best for tomorrow and I hope it's good news after the procedure. The MRI and CT scan results are very reassuring.

@OhjoyohblissMy DM was horrified at how he just came out with it but looking back I would prefer this to him try and ease me into it with a suspense novel.

I’m sorry you had weeks and weeks of waiting. That sounds horrible too and takes it’s toll I’m sure.

I keep getting stabbing pains in the boob (I’ve started calling it the treacherous tit in my head) and I just keep thinking what if the biopsy has maybe unleashed the cells. I know it sounds daft. Then I had backache before and my worry was that it’s in my spine. Every twinge feels magnified tenfold.

I feel like I can’t vocalise how worried I am to my family because I don’t want them to worry even more about me. Everyone’s been so helpful, DM and DH have spoken to their bosses today and reduced their hours so there’s like a shift rotation now to help with the kids and appointments and when I’m feeling crappy after chemo.

I feel like I’m waffling on here and I’m really sorry, everyone else is going through this shite and I don’t want to trigger anybody with what I’m saying.

I hope you have more good days with pain and nausea under control than bad days and I’m sending strength to everyone here ❤️.

@cannaecookrisotto don't worry about waffling on, that's what threads like this are for, to waffle on to complete strangers who understand what you're going through but won't get upset like your family members might.

I really popped on to say that, like Batshit, I also had my treatment privately. Yes, the drugs would have been the same on the NHS, but I had my own room when I went in for chemo with a TV and a bed, I had a portacath inserted rather than having a cannula every time and for my radiotherapy, a taxi came to pick me and bring me home every day for 15 days. Additionally, I'm now using the 12 1-hour personal training sessions covered by my healthcare to help get me back on my feet properly! And my last reason for using my private healthcare was to free up that space/resources in the NHS for someone else to use.

I’ve rang AXA today to start the claim and someone from the cancer team will call me in the next 48 hours to go through everything. Apparently I can have chemo at home??? They said the first couple they’d prefer to be at the clinic in case I have a reaction but after that they can have an onc nurse come to my house and do it here. Need to think about that.

hospital rang today, moved scans forward, so:
CT and ECG/Echo tomorrow
Bi-lateral MRI with contrast dye on Saturday.
Mammogram, ultrasound and Markers Thursday next week.

It seems so quick, I’m grateful it’s moving as quick as this but I’m panicking at the same time that they’ve looked into my results and thought “fuck, this looks bad, we need to crack on even quicker”.

I’m also terrified of hearing the full picture. Absolutely petrified out of my mind. That sitting down and being told one way or the other what’s happening in there. All I know is it’s TNBC and grade 3. Right now I can talk myself into positive thoughts of “it might not be as bad as I’m thinking” whereas those results are just the cold light of day and there’s no running from that.

I keep getting painful stabbing pains in the boob as well. Like a pokey stabby reminder of the unwelcome bastard.

@OhNoItsAdeno how did you get on today?

It’s times like this I wish I had some kind of health care plan.
It’s so difficult being part of this waiting game, life feels like it’s in limbo.
I’m so grateful for the NHS, but I can’t
plan a thing, just waiting for a call, a letter, an email - notifying me of my next appointment.

just want this done asap!

@LiliJilliBobs loss of control of your life is one of the hardest things about cancer treatment. There you are pottering along (in my case senior partner in a GP practice during Covid lockdown) and bang! Your life implodes. You have to stop work, cede autonomy to a faceless machine and accept whatever indignity is offered gratefully. All the while hoping they are going to save your life and not lose you in the system. My experience was that the specialist nurses were my lifeline. They chased my appointments, speeded up tests, rang me with results and listened to me wailing when it all got too much. The whole experience was traumatic and took a while to process and recover from. I had two different cancers in two years so have been round the circuit twice. This month it is three years since my second diagnosis and I am celebrating being fit and well again.
If you are struggling, ring the nurses!

New username for the topic.

Stage 2 invasive lobular carcinoma (breast)
Waiting for MRI results

Off work feeling very up and down physically. Headaches and fatigue

My appointment just made for Tuesday

@cannaecookrisotto You are exactly where I was this time last year - I was diagnosed with Grade 3 TNBC in early September 2024. It is utterly terrifying, particularly when you don't know yet what your treatment plan is but hang in there and once you have that it helps.

I know each of us is different but I had surgery at the end of October, started chemo in January followed by radiotherapy which finished at the beginning of July. Mid July I was advised that I could consider myself cancer free. It wasn't easy, in places it was awful but I got through it and am out the other side - not unscathed by any means, but out and no longer tied to hospital treatment.

Allow yourself to think that "this time next year it should be done" - it seems like forever but I promise you it goes quickly. You will get through it, take all the help and advice that's offered - there are a lot of kind people out there (but don't Google, it's not helpful).

Hi @FcukBreastCancer sorry to see you here too. I’m a newbie. I had the heart scan thingie and the CT scan today with dye. My MRI is on Sat. It’s just proper fucking shit if you’ll excuse my french.

@frostyfingers that’s reassuring to hear and it does bring me comfort when I read stories like yours. I’ve been ok today during the scans, my mum came with me whilst DH had the kids and I know it sounds strange but we had quite a few laughs today.

Ive discovered my coping mechanism seems to be making inappropriate jokes about it. We were driving to the hospital and Leann Rimes “How Can I Live Without You” came on Smooth FM, so I started singing it to mum. She didn’t find it very amusing.

My family have set up a family WhatsApp group so we can have updates in just one place and today there must have been about 25 sparkly “positivity” memes posted. I swear to god, I feel like punching the next person who tells me to stay positive. I know they mean well but for some reason it’s giving me rage.

I’ve not googled anything. I know TNBC is one of the rarer types with less treatment options and grade 3 means it’s faster growing. That’s enough scare factor for me. TBH I don’t even want to attend the results appointment to hear what the full picture is, I feel like jumping on a plane to the bloody Bahamas and telling myself it will all blow over 😂.

@cannaecookrisotto one of the assets of this thread is the Secret Virtual Rage Room. You can go in there any time you like and throw virtual crockery, smash small televisions with a big hammer and scream as much as you like! I actually proposed this to my BCN and she thought I was bonkers. Like you I was furious about having cancer. My TNBC was found six months after I finished successful treatment for my TPBC and it just didn’t make any sense at all. Try to visualise the fast growing cells as a rampant weed in the garden. It is very quick to grow but very susceptible to weed killer and mowers, unlike the sturdy little slow growing plants that lurk in the cracks and defy the gardener. TNBC is the convolvulus of the cancer world!

@cannaecookrisotto positivity memes would have made me the same as you - bloody furious! My family goes in for inappropriate black jokes instead. My work colleagues said things like 'Well, at least it's winter while you're having chemo, so being tucked up in bed isn't such a problem!' (I work in oncology research- requires the same sense of humour as medics).

Keep on keeping on - it's less than a year since they found my HER2+ Stage 3 cancer and I'm also cancer-free now.

As a little whinge for myself though, found out yesterday that, as a side-effct of my chemo, I now have a cataract starting in one eye. Which has pissed me right off! I was always high risk for cataracts wven pre-cancer but I thought I'd get to my sixties before they became a problem (currently in my fifties, so not as far off as I might like to think but in my head I'm 19...) . Not fucking fair!

Edited for typos

Thanks @TopOfTheCliff, no doubt I’ll have a season pass to the rage room fairly quickly ha! The weed analogy is a good one, going to zap the little fucker. I already feel like it’s a traitor to me. I’ve never done anything to upset my left breast yet it’s turned against me like a little Judas!! Pffft. No longer welcome in my house this tit. I’ve been reading back through the older threads and can see you’re a veteran here and when you said you’ve got the t-shirt you weren’t bloody kidding!!! It’s lovely reading about your adventures as well and how fit you are. I think you’re even fitter than I was as a 30 year old. I lost a lot of weight after my daughter was born 5 months ago (10kg) and I was thinking “this is bloody marvellous, the weight is dropping off”. Now I know why!!

@Poledrai’m more about the inappropriate black jokes as well, I’ve pinned a message to the top of the WhatsApp group now with a list of banned phrases like “be positive” and “you’ve got this sweetie”. I’ll boot them out of the group if they carry on 😂. I’m so happy to hear you’re cancer free, it’s like therapy reading of women like you lot who has worn the shitty t-shirt but have come out the other end. Not unscathed by any means and I’m sure even afterwards there’s a whole new era of anxiety but cancer free for other people gives me hope too.

I’m sorry to hear about your pesky cataract, what a pain in the ass! I never even thought that would be a side effect of chemo, it’s like the gift that keeps on giving.

Would you wise women recommend a portacath?