Cancer Support Thread #81 Newbies welcome

[TopOfTheCliff]

This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
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Thanks to everyone who took the time to reply. The cancer was found in a polyp removed from my uterus during a hysteroscopy. I eventually got the call and it's good news.The results of the CT scan are good - the cancer hasn't spread and hopefully a keyhole hysterectomy should be enough.
Love to everyone suffering this horrible disease.

@EffortsToBuild

@EffortsToBuild that's great news, as cancer goes, I chased them both times after my MDT btw, the waiting was like you said unbearable

@Thymeout enjoy your appointment free summer, I'm actually looking forward to hopefully feeling well enough to sit outside by the time it gets a bit warmer

I'm having a weird week, got my pre op appointments tomorrow, on Monday I took off my HRT patch and stopped vaping but I've been really dizzy yesterday and today, I'm really debating whether I'll be able to drive myself to the hospital tomorrow, no idea what's causing it.

Glad you got results Efforts

MissSmiley I am in no way medical but was told when I had dizziness before can be hormonal and exercise can help by gynaecologist. Obviously can be lots of other causes, anxiety, low blood sugar, anaemia etc and best to get checked if persists. Ensuring I drink enough also helps me not sure why

I'm jumping back on the thread after a hiatus due to recent anniversaries of diagnosis and then first chemo - ugh...I see I'm in good company - I also turn 50 this year. I don't do big birthdays but I am hoping to get a new boob around then!

I've been bumbling along on Kadcyla then got to the halfway point (7 out of 14) and have had to have a break due to elevated liver enzymes. So far this has added another month to the already long course I'm also really suffering with fatigue. A day out at the weekend had me pretty much asleep for two days afterwards.

How awful that you're still going through the mill due to someone else's mistake @MrsPnut I've been left with what looks like a slice of toast on the flat side of my chest due to the radiotherapy! It's very accurate position-wise so hopefully they'll be able to devise a way to dose you up & get that part of your treatment sorted.

@Silkierabbit out of that list it can only be hormonal as I've ridden my Peloton today, eaten haribos, not feeling anxious and haven't had a period since 2015 so my iron levels are spot on, I knew it would be the f*cking menopause. I'll be asking the anaesthetist when I can put it back on when I see him tomorrow.

Looking online seems to say its often hormones affect blood sugar management in menopause and best to eat throughout the day rather than big meals, to drink a lot of water etc and avoid sugar. That is me stuffed as I also love sweets though am convinced they cure cancer, having said that I really would not have got it in first place if that was the case. I find daily exercise helps not massively energetic stuff just 20 mins of gentle stuff or walking. I can never take hrt now.

@EffortsToBuild yay to clear CT scan! 💪

@Acinonyx2 I am the same. Any twinge I get I immediately think of cancer. It’s living with everyday twinges I need to learn with, otherwise it gets so all-consuming.

I have just told my brother (via Viber as he lives in my home country) I have been seeing a psychologist at Maggie’s for the past 9 months. And then I just burst into spasm of tears and sobs.

@HauntedDishcloth 1972 was a great year! 🥳
This month is my radiotherapy anniversary (1st birthday). A certain body lotion I used after showers at the time (not on the treated part) transports me back to that radiotherapy table, so I’m thinking of binning it now. 🤢

Hi @Acinonyx2 I'm waving at you from Covid prison I get out on Saturday.On the day I tested positive I was offered my 4th booster🙄I did have my PCR within 5 days I wasn't offered any antivirals do they only get given to people receiving treatment?
I'm planning to eat a whole Colin Caterpillar Cake on Sunday and I might wash it down with some Cava because I'm a fan of alliteration, a covid celebration.
Lots of 50th birthdays coming up I also turned 50 during treatment I had chemo scheduled on my birthday! I kept it very low key family only(lockdown was a blessing) and took my birthday of Facebook because I didn't want to be bombarded with social media messages. I ended up having a unexpectedly lovely day and I hope despite the shit circumstances you all can as well.
Last month I heard that the NHS have agreed to pay out my pension early. I have mixed feelings about this because obviously they are paying because I'm unlikely to make it to pension age. But I try not to dwell on that and make plans to be a jolly pensioner maybe I'll buy a boat and join you Top. X

@Acinonyx2 Poor you, hopefully covid prison releases you today.

Yesterday, I saw the tissue viability nurse who said "I can't do anything about that until the port is removed", and so off I went to Oncology assessment to see the young registrar. He didn't know what to do either so contacted the vascular team - "not us mate" and plastics in Leicester "can you send photographs". So photos taken and sent. They came back with "has she seen her breast surgeon".

It's like some dystopian nightmare.

Radiotherapy is on hold for now due to the hole, not sure if it is going to go ahead at all.
The nurse's IV pump has finally been sent back to the manufacturer for the event logs to be downloaded. It only took the company 3 weeks to locate it and swap it for another one. I am hoping once the event logs come back that they line up with my version of events because this has just been dragging on and on.

I've got a twinge in my arm, opposite arm to bad boob but I have been convincing myself that it's the infection from my chest that has travelled to my elbow. Except the swab done on Monday hasn't grown anything and I did do DD's paper round for her on Tuesday so I've probably strained it opening letterboxes.
Still, I might be at death's door!

@EffortsToBuild Glad it was sort of good news, in my experience gynae are the worst department when it comes to being organised. I waited ages for my results and for my case to be discussed at MDT when I was first diagnosed.

For the love of… DS’s test this morning. Which means I will have to have my CT scan postponed. To the delight of my anxiety.
Me and DH are still negative but that can change by next week. And anyway, there is no way I would be allowed in as a close contact, even if I was negative.
Damn!

And yes, I have been quadruple jabbed (3 full doses + booster), DH has been double jabbed. & boosted.

Fuck you, Covid!

I know I am being selfish and I do realise why I won’t be able to have my CT scan on Tuesday but I am still having a cry & a good old rant against the world.

@balkanscot if you are still negative it would probably go ahead. Contacts don't isolate anymore.

@Runningwithoutstopping I'm not sure there is a consistent logic to it. I think I got allocated due to treatment-induced pneumonitis which has been hard to get under control but actually not exacerbated by covid as it happens.

@MrsPnut that is so exasperating. I'm exasperated reading it. Probably a pointless suggestion but my surgeon gave me pico dressings (vacuum sealed) and that did help the holes to heal in the end. Radiotherapy was delayed about 2 months.

Hi @HauntedDishcloth - good luck with the Kadcyla train. Weird to think I should still have been on that til May.

@balkanscot, that is absolute rubbish. I’m so sorry this has happened to you . You totally deserve to have a rant just now.🙁

Oh Balkan, that’s shit. DD tested positive last week and my CNS reassured me that my forthcoming chemo could go ahead even if I become positive, as they have “hot rooms” for the infected. I know CT is part of the main body of imaging but it might just possibly be ok..??

@balkanscot echoing what others have said…I’d double check that if I were you. My neighbour is a radiographer at our local hospital and I know they were still scanning covid positives, so there’s a very good chance you’d be ok, especially if you continue to test negative. Its utterly rubbish isn’t it, as if things weren’t tough enough for us all without bloody covid on top! Good luck!

Thank you all. If I still test negative (LFT) on Tuesday morning does that mean I can go and get my CT scan? DH told me to ring them and explain the situation and ask if I can come if I test negative but I fear that as soon as the admin person on the other end of the phone hears the C word that’ll be it. No pasaran.

As far as I understand the current rules are (if you live in the same household as a person who has tested positive) you don’t have to self isolate if you have been triple jabbed and keep testing negative.

I mean, obviously, I will cancel if I test positive before/on Tuesday. But still feeling a bit scared I would be breaking some sort of rules if I went in after repeatedly testing negative for the next 4 days.

I feel on a verge of a nervous breakdown. i keep feeling a barely noticeable twinge in my rib area and have built this up to be metastasis. 🙄

@TwoBigNoisyBoys that’s interesting, thank you. Indeed, bloody Covid, it even starts with a C like the other one!

February is always a mixed bag for me as this is the month that my DF died from prostate cancer (after successful treatment for breast and then kidney cancer). He almost certainly had the BRCA2 mutation. Just like me. But who knew about this in the early 2000s, in Croatia?! And I watched him slowly die, being ravaged by the C fucker, it was indescribable!

@balkanscot I hope you continue to test negative. I'm sorry about your DF, I lost my best friend to bowel cancer three years ago at 46, it's a shittest thing.

I'm isolating now until my surgery a week on Monday, with five teenagers in the house, two have had it very recently, they are all going to school and work, it's very difficult as a single parent to shield from your kids but I'm trying.

Ticked the box that said cancer on the prescription charge exemption form at the GPs, that felt unbelievable real :-(

Big hugs to everyone

@balkanscot I have my fingers crossed for a negative result for the next few days.

I have a case of interfering oncology consultants, I had a call on Friday afternoon asking me to come and be admitted for IV antibiotics. I got there, was prodded and poked and finally seen by a consultant oncologist who agreed with me that there was no benefit to me being admitted and oral antibiotics were fine. It appears that the other consultant breast oncologist has over stepped his mark.

@MissSmiley Still negative… 🤞
Hope your isolation goes OK. Ticking cancer boxes does make it a bit surreal, doesn’t it?

@MrsPnut thank you! Negative so far… Clashing professionals, agh! I hope it’s a one off. The last thing you need, after all you have been through, is different oncologists playing table tennis with you. Still, it’s good that you can get oral antibiotics and stay at home.

I am petrified re: tomorrow’s CT scan. My lower back (well, coccyx m) has been sore for the past few mornings, just before I get up. I chalk it up to not being out of the flat since Friday (either sitting down or lying in bed reading), plus I need new running shoes after 5 years. I am convinced it’s bone spread. This shows you all what a f up place my mind is at this moment.

Having a bit of a panic this morning. Found a lump in my tum just above the navel. Of Course I cant get a doctors appointment. Think it might be a hernia after my hysterectomy last March, as least I hope its that and not a cancer reocurrance. Im already sweating on oncology CT results which I should get this week.

@balkanscot one of my twins tested positive yesterday 😱😱😱 and then the hospital rang this morning to say they had missed a crucial clotting blood test thing at my pre op appointment on Friday and could I go in to have it done, so I've just been all the way to the hospital (45mins away) and back for one blood test!

@thereisonlyoneofme the anxiety about every lump and bump and pain and ache is very real, big hugs, hope you get the reassurance you need soon.

@MrsPnut it's not great when they can't agree, but at least you didn't have to stay in.

I'm hiding in my room now until my PCR test on Friday praying that it's negative so my surgery can go ahead a week today.

A lady rang me this morning (through GISTUK charity) who had a Whipples two years ago also for a duodenal GIST, she was 47 at the time and has massively reassured me about what I can expect from recovery. Although sadly she had a reoccurrence 8 months after her op in her liver and is now "living with cancer". The histology results from my tumour will be very important in terms of prognosis but I'm trying not to think about that yet.

Hi
Can I join please?
Have just today been diagnosed with grade 3 invasive duct carcinoma. I'm 45 with 3 children. I didn't have a lump or anything, I just asked for an early mammogram because of family history. GP nor breast nurse could feel a lump either
Last Sunday I had the mammogram, ultrasound and biopsy within a few hours (thank you NHS) and today I saw the nurse who confirmed what it was.
I'm seeing the surgeon tomorrow for a treatment plan, which is likely to be wise excision and radiotherapy. The cancer is very small at 5 mm.
It is not hormone receptive.
They are testing it for HER and genetics still.
I am dreading telling my children the most.
Any positive stories would be great right now!