Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh)

@Bloodybridget yeah I reckon I could fill a few therapy hours - maybe it would help me out of the pity party I seem to have sunk into just now. I could slap myself if I had the energy.

Spoke to nurse - no opinion on vaccine.

@Acinonyx2 please don't beat yourself up about feeling low. You're allowed to! You wouldn't want to slap your best friend if they were in your situation, be kind to yourself.

@Acinonyx2 Don't feel bad about feeling low, it's a shit disease in a shitty situation at a shitty time of year.

The brachytherapy is not something I am looking forward to, but the alternative is the increased possibility of the tumour returning.

If I had cervical cancer then a general anaesthetic is given for insertion of the rod because of the placement. Mine is just in the vagina so I can have it without the anaesthesia which is a good thing because then I can drive myself back and forth to the hospital.

I'll endure it for the 4 sessions, it should only be for about 10-15m a time and I shall bitch about it furiously.

I've also booked a mammogram and ultrasound for next week so my surgeon can take my case to the MTD the week after and we can book the surgery.

Thanks guys @MrsPnut bitch away! Me I love a bit of anaesthesia. Can't be too comfortable driving after that.

So I just went for my MRI before seeing the surgeon on Monday. But after 5 attempts by 2 nurses, they couldn't get a cannula in and officially gave up. I'm rebooked for Thursday - to go up to vesicular access first and get it done there then back to MRI. I don't have a power port so can't use that (but the scan nurses don't know how to access one anyway).

It's a good thing there is no booze in the house. If I didn't feel sick already I'd beg dh to get me some. Still considering it.....

Hi @MrsPnut - you have my sympathies. I think a lot of this comes down to how resilient you’re feeling- you sound a bit perkier than last time you posted (I am carefully avoiding any reference to being “positive” - can you tell?!).

I had another small piece of my vagina removed under general anaesthetic a couple of weeks ago. I have an internal examination for monitoring every 3-4 months, and my gynaecologist spotted some skin that was “probably” granulated tissue. He thought he might be able to “twist it off to biopsy it”, but abandoned that idea fairly shortly at my reaction!! (I don’t think the nurse’s hand has recovered from the time in November when I agreed to have a biopsy under local!)

I think what I’m trying to say is be kind to yourself - if you can cope with the treatment without general then that’s great, but you have a lot to deal with, so see how it goes.

(While typing this I have received the GP letter from my surgeon: “she was unable to tolerate having a biopsy as an outpatient”. Too f*ing right, mate.)

Waving at @Skap !!

Still waiting for my appointment, have rang my gp to see if they can move it along.

For those of you with questions about the AZ covid vaccine I might be able to help. I'm currently working with the community nurses to give it to house bound patients. If you have any questions feel free to ask!

I actually had my vaccine yesterday! The Vauxhall Astra one, as my mum calls it .

I've had a letter saying I need one as I'm on the vulnerable list but as my chemo is weekly I don't see how I can fit it in.

@HumphreysCorner ask your dr for advice? I know someone was advised day before or after chemo - that might work for you.

My oncologist is calling me in fifteen minutes. I know it's going to be bad news, but wish me luck!

Good luck, BitOfFun ❤️

@BitOfFun hoping there is a plan for you - tell us how it goes. Very best of luck!

Good luck @BitOfFun.

@Toofaroutallmylife Thank you for your kind words, it is amazing the strength I gather from this thread and also another very amazing mumsnetter who messaged me privately when I first posted about my cancer and has been so supportive and generous with her experience of a similar gynae cancer.

I had a call yesterday afternoon, telling me my first session is on Friday. I did have a little cry about it and I still feel quite emotional. I think I’m going to email my oncologist and maybe set up a video call with her tonight if she has space to discuss it further.

Hello!

Sending much love to everyone who has been having such a rough time recently. @BitOfFun I have everything crossed for your call.

I have been incredibly run down since my vaccine. I developed a crop of cold sores on my bottom lip which has made it swell up to a massive size. Thank god for masks, because I think otherwise people would be running away from me in horror when I go on my daily walk! I look terrible.

Anyway, I saw the oncologist today for a check up before Friday's chemo and he took one look at my mouth and has postponed it for a week. He's given me some tablets to get the cold sores under control, as well as something a bit more heavy duty for the nausea. I know it's the right decision, but I just feel very down at yet another delay. It seems never ending!

Interestingly, he didn't tell me off for having the vaccine on day 12 - he just shrugged and said "you have to have it some time". So at least I didn't get another telling-off!

@Bloodybridget
How lovely of you to think of me .
I finished chemo exactly a year ago and Herceptin just before Christmas .
I am really well ( there is light at the end of the tunnel !)
I go into local hospital here on the Isle of Man for double mastectomy next Thursday . It’s really the removal of the skin expander that I have hated since it was inserted last March and a prophylactic removal ofotber breast .
I was due to have a DIEP reconstruction last March in Manchester but it was pulled and a skin expander inserted instead to get me out of hospital and back to island asap.
I am very happy to have jumped through all the hoops and although i am cancer free since last March even happier and looking forward to being both cancer and boob free.
Sending huge hugs to you all and I think I will just lurk now as an imposter poster!

Waves to @Trumpton. So pleased you've got booked in and it will all be over soon.

Thinking about BOF.

Vaccine - I had the AZ ten days ago as did DH. I have auto immune disease and had zero side effects apart from a sore arm. All the young, fit healthy people I know, including DS(22 NHS) have felt unwell for 24 hours with shivers and aches. My completely unfounded theory is that a) young people have more robust immune systems and
b) they are not used to feeling unwell and make more of a fuss. DS found me most unsympathetic

@HumphreysCorner I had weekly chemo and my best day was always day 2. Trouble is that might not be the best day medically to have the vaccine. I would ask CNS because they may not know at vaccine centre.

Hi again everyone, I’m just coming out of lurking to ask if any of you with BC have any experience of being of Kadcyla? Particularly the severity of side effects in comparison to FEC or Docetaxol and whether you have been able to work during treatment?

My treatment plan has hit a few complications and things feel like they are changing on the fly at the moment.

I have had 6 out 8 (4 x 4) chemo treatments and then caught Covid. I was admitted for 3 nights, but have since recovered pretty well, although I get very tired - on top of the usual chemo tiredness!

I’ve had to be re-tested and it has come back as still positive. As a result, the already delayed chemo I was due to have this week was cancelled and has now moved to next week but with the chemo element removed so I’ll just have Herceptin & Perjeta. I’ll then have to have another COVID test before the final cycle and the result will depend on what they do for that one.

I’m having neo-adjuvant chemo, so the surgical team also need me to have a negative test before proceeding. Obviously this is for their safety as well, but they are also concerned about the effects of the anaesthetic on someone with Covid in their system.

My oncologist has also told me that my mid-point MRI has shown that the tumours (I have 2 in 1 breast) have not shrunk very much and that they don’t think they’ll get all of the cancer out during surgery. Hence the Kadcyla post surgery. The standard treatment cycle for Kadcyla is 21-day cycles over 12 months.

I have been pretty ok during everything so far but I now just feel utterly deflated. Perhaps the surgery results won’t be as bad as they fear, but for now the thought of another 12 months of chemo is really grim. I can’t find anything online to give me any sort of clue of whether I will be able to go back to work or if it is going to be more of the same as now. I have been off work since the start of treatment in September & certainly not capable of working whilst in the worst of the side effects, but a further 12months off is a very long time!

I’m also fretting about the surgery. I know it will be a mastectomy, that has been said right from the start and I’m totally fine with it, but I have a large bust, GG - H cup, and the thought of being left uneven horrifies me. I’m happy to have a bi lateral mastectomy but I don’t know if that is permitted without good reason as the other side is healthy. I have my first meeting with the surgeon in 2 weeks so we’ll discuss it all then & hopefully I’m worrying about nothing.

Anyway, sorry for the rather long self pitying post! If anyone can share any insight into Kadcyla and its effects I’ll be very grateful.

Checking in on @BitOfFun x

Not great news from my scans- the cancer has spread to my liver and brain, which is final straits really. I pinned them down to a timescale of 6-12 months. I'm going to die as well as I can manage, I promise.

Hi I was on this thread back in October, had a fairly rough few months (but nothing in comparison to many of you warriors here who still have the energy to post!). Finally today I've finished the 4×EC, 12×Taxol chemo.

@merlotbythefire I remember we were having similar treatment. Sorry to hear about the complications you've had. I also had covid but was very lucky to stay out of hospital and just had a 1 week chemo delay. I'm in Switzerland and negatitve tests aren't needed before chemo.

My chemo seems to have worked quite well, but my oncologist says 50% chance I'll need kadcyla. This will only be for what remains of the 12 months of herceptin, so until November. My oncologist was very positive about kadcyla being well tolerated, much better than EC/Taxol. I'll have to go every 3 weeks for herceptin anyway, so hopefully kadcyla wouldn't make too much difference. But kadcyla's only recently been approved specifically for use after neoadjuvant chemo, so there's not much feedback on how patients feel and how many manage to go back to work.

So saddened to read your update @BitOfFun , sending my thoughts and best wishes for the coming days.

@BitOfFun big hug from me at your news. X

Oh @BitOfFun sending so much love xx

Much love @BitOfFun

So sorry to hear that BOF.

@BitOfFun wish I could be right there to give you a big hug.