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Cancer support thread 90 - still the best threads no one wants to be on

1000 replies

LemonDrizzle10 · 14/09/2023 08:07

Last one filled up quickly!

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42
ForfarBridie · 06/10/2023 17:23

I know exactly what you mean about trying not to sound dismissive of people's trauma when they say, eg how traumatic it was to have stage 1, grade 1, ER+ BC treatment, that was all done and over with within a couple of weeks, with a normal breast afterwards, no chemo, minimal if any radiotherapy and a low grade cancer. I don't think they realise how lucky they are as cancer patients to have that type. But nobody is going to feel lucky when diagnosed with cancer, obviously, and I do absolutely need to remember that

There’s no luck associated with any cancer diagnosis. And many woman who does have an early stage diagnosis which was treated with surgery can have to live with a 60 percent chance of reoccurrence over the following two years. They also have regular check ups and scans over the next 5 years even though their chance of reoccurrence could be down to 12 percent by that stage.

And there are stage one cancers that do need treated with chemotherapy. So realistically stage one means very little in the grand scheme of things. And all the more so when a woman with a stage one diagnosis is told your cancer type is treatment resistant even at stage one and we would rather keep chemotherapy for a time it may reoccur. You see if it does come back there’s very little that can be done apart from trying a few rounds of chemo just for the sake of it because sadly most people die within 15 months of a recurrence anyway.

But maybe that’s where the luck that people talk about comes into it - you can die without having to go through much chemotherapy or any other form of treatment because there really wasn’t much if anything that could be done for your original stage 1 diagnosis anyway.

I think most people with a treatment resistant stage 1 diagnosis would walk on hot coals if it meant that should their cancer come back they’d have a whole list of treatment options they could try however awful they are.

There’s no greener side to the grass when it comes to cancer.

BreakfastClub80 · 06/10/2023 18:12

@doublec thanks for your reply, that’s very thought provoking. I hadn’t realised that the BRCA gene links to those other forms of cancer but it makes sense and also, yes of course where do you draw the line in terms of surgery etc?

I am partially deaf, having inherited this. But even though I have a working diagnosis and someone somewhere has identified a gene connected with the syndrome, when tested they couldn’t find the mutation in my genes. My consultant said that might be the case and it doesn’t mean I have something else, though it might, it could just mean there are more genes involved. There is still so much to discover about genetics.

@ForfarBridie very true and very sobering.

Octopus45 · 06/10/2023 19:31

@Scandimandy and @doublec , its interesting what you've said about the gene mutations and family history, especially major surgery potentially being for nothing. I'm wondering about genetics in our family. My maternal Auntie had it when she was 51 (lumpectomy, radiotherapy, chemo - full recovery). My Mum died of leukemia when she was 58, but I wonder if it would have got her later if she had lived. To my knowledge my maternal Grandma didn't have it and lived to a ripe old age (89). Her Mum died in her mid 60s, dont know the cause.

@HohiyiKozbevi I'm totally with you about not wanting to acknowledge that things might be normal again and I fully understand the exam worries etc with teenagers. My oldest teen has just done his GCSE's. fortunately whilst they are in important years at school, they are not exam years. Also understand about wanting to get well into their adulthood before it strikes again if its going to. One of the things I'm finding hardest to deal with is my boys having to deal with an ill parent at this age, I really wanted them to believe that I was invincible for a while longer. I found it hard enough having to with parental illness in my 20s when very few people I knew were going through the same thing.

If anyone is looking for specialist post surgery bras, I saw some in Primark and bought a couple, one proper post surgery bra and a pack of two crop tops. I'm on the small side (about 32D).

I am thinking of all of you who are having treatment. I also want to say a big thank you for all of the welcomes, sorry I haven't responded to each individual one. Hope everyone manages to have a restful/on some level enjoyable weekend.

TopOfTheCliff · 06/10/2023 19:59

@ForfarBridie I would agree with you completely about the fear of recurrence being a major burden even for early stage cancers and am not minimising that. It’s just the contrast with six weeks of treatment versus eighteen months of not being able to work, exercise as I would like, swim or socialise due to chemo and still having the fear anyway. If I thought it would reduce my risk of recurrence then I would take anything they offer me. I just wish I didn’t need it!

The twisted knee is less sore today. I haven’t done anything too serious I think. Luckily as I am off to see DM89 tomorrow.
Are you around @Florabritannica on Sunday for a meet up?
No worries if not.

Florabritannica · 06/10/2023 20:20

Apologies all for being somewhat absent from the thread recently.
It’s been a tough week for various reasons.
I’d love to meet up on Sunday @TopOfTheCliff - what sort of time were you thinking?

SierraSapphire · 06/10/2023 20:32

What I would be interested in knowing is if both my parents had both mutations, or if my mum had one and my dad the other, or just one of them had both mutations I wonder whether this is possible @doublec as my Ancestry DNA result is able to tell me the ethnic breakdown of my mum and dad separately just from my DNA, it’s maybe more just a question about whether it’s anyone’s priority.

Cancer support thread 90 - still the best threads no one wants to be on
lucysmam · 06/10/2023 20:57

Fascinating to read all your chat about genetic mutations. I won't pretend to understand much of it but it is really interesting!

I had my first Goserellin injection today & came home with a bag full of creams and pills. I'm slightly apprehensive about the Abemaciclib now I have it - mostly about the diarrhoea (sp?) side effect. I'm off to a Hull Uni open day tomorrow with dd1 and her friend (whose parents are nice but just not that interested, unfortunately) & daren't take it in case I'm caught short on a coach full of strangers 🙈

Had a chat & a laugh with the nurse who gave me the injection. She has the same BC as me & same combo of meds, even down to having her first Goserellin injection yesterday! Turns out her parents owned the Chinese takeaway literally ten minutes walk from me! They still live there but her dad's unwell so they stopped trading...it was always lush too & the smell, if you were down that way on an evening, was devine!

She was telling me about a funny phone call she had with a male pharmacist who rang to ask if she wanted anything for vaginal dryness - except he was struggling to say "vaginal dryness" clearly & was sort of muttering it...I'll look forward to that one 🤣.

@Florabritannica hope you're ok 💐

@TopOfTheCliff glad to see your knee is better today! Your brow adventures made me chuckle.

Florabritannica · 06/10/2023 21:09

@lucysmam Thanks, and good luck with the Abemaciclib. Loving the vaginal dryness story!
Mid-chemo scans this week. All seems to be working, though the radiologist said there’s a lot of calcification - some definitely benign, some definitely cancerous, and some he’s not sure about. He said it will be discussed with the MDT next week but they might change their minds about lumpectomy. Googling calcification provides very little useful information.

Octopus45 · 06/10/2023 21:16

@TopOfTheCliff glad your knee is better today.

@lucysmam that sounds like a funny conversation.

SummerCycling · 06/10/2023 21:24

@ForfarBridie

Are you really sure that grade 1, stage 1, ER+ BC can possibly have a 60% chance of recurrence? I struggle to imagine that to be honest. Let alone over the first 2 years...

Even I don't have a 60% chance of recurrence with a HUGELY more aggressive cancer with HUGELY higher risk of recurrence than a person with stage 1, grade 1, ER+ BC.

You only mentioned 'stage 1' when responding to my comment, but I was being much more specific. I was talking about grade 1, stage 1, ER+ BC. NOT stage 1 of any cancer, any grade.

SummerCycling · 06/10/2023 21:27

PS @ForfarBridie

There is definitely a 'greener side to the grass' to certain cancers in comparison to others. Obviously there is, well, in my opinion... of course.

Give me stage 1, grade 1, ER+ BC any day over stage IV pancreatic cancer. For example. Or in comparison to almost all other cancers really.

SummerCycling · 06/10/2023 21:29

Oh my, I would have felt SOOOOOO lucky to have had grade 1 stage 1 ER+ BC and not stage 3c Grade 3 Her2+++

MASSIVE MASSIVE HUGE difference.

Now I will log off.

SummerCycling · 06/10/2023 21:32

Ok, before I do, can I just mention how stage 1, grade 1, ER+ BC has a survival rate over 10 years of over 99%

Your 60% recurrence is clearly not about the cancer I was talking about.

doublec · 06/10/2023 23:09

SierraSapphire · 06/10/2023 20:32

What I would be interested in knowing is if both my parents had both mutations, or if my mum had one and my dad the other, or just one of them had both mutations I wonder whether this is possible @doublec as my Ancestry DNA result is able to tell me the ethnic breakdown of my mum and dad separately just from my DNA, it’s maybe more just a question about whether it’s anyone’s priority.

@SierraSapphire

Am not quite sure what Ancestry would actually bring to the table? As I am Jewish with a pure bloodline (by which I mean no-one has married out,) I am able to trace my lineage back through marriages/synagogues. However, and at the same time, huge swathes of my family died in pogroms and concentrations camps. I also know I am of Ashkenazi descent, as are my parents, their parents etc. etc, and I know where in the world we originated from. They are all ethnically Jewish, as I am I. I know I have two BRCA mutations thanks to recent gene testing, so what would Ancestry add?

Please do enlighten me as maybe I'm missing something?! Apologies for being dense!

Silkiebunny · 06/10/2023 23:14

Summer and Far I really like both of you and hope you both stay in the thread. I can see both sides of this, I think some treatments can be horrific, for me chemo was and 18 months of non stop cancer treatment Top deserves a medal for.

Different cancers will have different prognosis and it's normal to wish you didn't have cancer or your odds are better or you wished you'd been older when you got it. Several people on the stage 4 thread have said they wished they just had a primary cancer and I can understand that. I wished my children would have been adults with their own children before I got it. But all cancer is rubbish and nobody that has it is lucky and I would refrain from using that word Summer. I know what you mean but I think it's the use of lucky that is triggering distressing memories for Far. I also had surgery with a woman aged 30 with the stage 1, grade 1 cancer and for her that meant no second child, a lifetime of worry even though her treatment was just a few weeks, you could see how broken she was and when it occurs younger the stats aren't so good. Obviously I would have preferred mine caught earlier at stage 1 rather than stage 3 but it's difficult for almost everyone with cancer and we all should be as kind as we can to each other. You both seem very kind people to me, I think it's just unfortunate phrasing.

Silkiebunny · 06/10/2023 23:48

Hope everyone has as good a weekend as they can.

I am on the steam boat Waverley tomorrow with DH then gardening on Sunday.

Have appointment re surgery on Monday though it's probably just going to be a long wait yet though not sure first time they said December, last time next June. I am off Tamoxifen for 6 weeks atm and it's interesting I don't feel or look much different so it maybe menopause.

Had a nice Chinese meal tonight. Swimming yesterday.

TopOfTheCliff · 07/10/2023 00:33

@Florabritannica my DM is a late riser so perhaps we could meet early for a coffee? I’ll DM you.

@Silkiebunny I’ve done 18 months then 8 months off ( just on exemestane and Zolendronic acid) then another 14 months treatment second time round. I was mulling it over today and I’m feeling quite cheery and resilient considering what a bloody awful time I have had. Just 18 days left now. Bring it on!

SierraSapphire · 07/10/2023 06:09

@doublec I wasn’t suggesting that you get your ancestry done, sorry for the confusion! I was just musing that they had separated out which DNA came from each parent without having the parent’s DNA so in theory that might mean that there is a technique that could identify which of your parents the mutations came from. Okay I’ve just googled it, I wondered whether it was something to do with mitochondrial DNA, which is only inherited from the mother, but it turns out. It’s actually about analysing your DNA matches, so you do need other people to do it and not just yourself (though not necessarily your parents) https://support.ancestry.com/s/article/Science-of-Traits-Inheritance-by-Parent?language=en_US

AncestrySupport

https://support.ancestry.com/s/article/Science-of-Traits-Inheritance-by-Parent?language=en_US

Florabritannica · 07/10/2023 06:23

Cancer is shit in all sorts of different ways. Everyone’s life is different and everyone’s cancer is different so the permutations of shit are limitless. People who were here on the thread when I was diagnosed back in July will know how hard it was for me to take that diagnosis and I felt supported and humbled by how everyone here was dealing with their own unique pile of shit.
Where I think we are genuinely lucky - and I hope this is uncontroversial - is to live in a time and place where a diagnosis is not an automatic death sentence and where outcomes continue to improve. No other society in human history has had this, and there are plenty of people alive today who still don’t.

RedRosesPinkLilies · 07/10/2023 08:35

Cancer is a difficult subject - it’s one of those terms that covers a myriad of diagnoses and prognoses. So i suppose in comparison some cancers are ‘better’ to get in a physical sense.
But emotionally they are all the same - and the catastrophic effect they can have on our psyche is not to be underestimated

My own cancer is primary peritoneal - rare and with a shit prognosis. But as @Florabritannica just said we are lucky to live in the 21st century and have a better chance at longer and healthier survival than previous sufferers.

Its just a horrible, complex situation and individual stories don’t compare.

Octopus45 · 07/10/2023 08:51

@Florabritannica that is so true about the treatments available and the times we live in.

i’m so sorry again to all of you for all the diagnoses/treatment everybody is going through. When someone has short term treatment or whatever situation they have which seems easier, maybe the word fortunate is less emotive than lucky. Hope I haven’t offended anyone

Florabritannica · 07/10/2023 09:25

On a different note, I’ve been designing a bingo card of fatuous clichés people say to cancer sufferers.
So far I have

You look well
Any sentence involving the word positivity
Ditto battle
Broccoli
My mother/sister/friend …

Further suggestions gratefully received.

lucysmam · 07/10/2023 09:28

Who's said "broccoli"?! 🤣

Fantasea · 07/10/2023 10:02

@Florabritannica I've got a few!

'Oh don't worry about your hair, it will grow back'
'You're so brave, I couldn't put up with all that treatment'
'Kale'

thesandwich · 07/10/2023 10:23

‘So you only had light chemo?’ ( NOOO 12 rounds! EC/ PAX)

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