Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

Good morning everyone,

I hope everyone waiting for news gets a good outcome, waiting is horrible. I turned to compulsive baking and absolutely nailed a chewie cookie recipe while I waited.
I've just had my first cycle of chemo, I think it's my children that I'm doing it for so I can be with them when they have their own babies. The oncologist talked about percentages but she was clear that with modern treatment, most ladies with breast cancer will get a good result.
In the meantime I feel worse than after the unfortunate incident with bottomless wine and no idea when the chemo hangover of doom will abate. Next time I'm asking them for every drug known to man. And a kitten to keep me warm.
Good luck to everyone with their treatments, we can get through this.
X

@Zorgoth
Thank you, but how do you know you are herceptin positive, or whatever? Or what stage? Where did you get the information from? Do you need to specifically ask for it? Because this is stuff I don’t know. No one has said, and there’s nothing in all the documentation I have. I don’t know what stage cancer it is or what the hormone markers are.

@daisypond my consultant explained I was hormone positive, herceptin negative and tumour size at my results appointment. My Macmillan nurse then took me to another room to explain more and wrote it down for me.

@daisypond I found out at the first meeting with my oncologist. I have triple negative so I'm having chemo before surgery. You should find out before you start treatment as you will need to agree a treatment plan. Mine is chemo, surgery, radiotherapy, then a reconstruction some way down the line when we're sure we"ve got it. People who are not triple negative may need to take regular medication for some time after the initial treatment.

Make sure you write down any questions you have. Do you have a breast cancer nurse you can ring and ask? I found book [[https://www.amazon.co.uk/dp/B078T6FNV6/ref=dp-kindle-redirect?_encoding=UTF8&btkr&tag=mumsnetforu03-211]] useful when I was waiting for my diagnosis.

Ok, maybe I need to ask. The consultant told me what size it was and where it was and what the treatment plan was, but nothing else. The nurse later told me precisely what cancer it was, lobular in situ, but nothing else.

@citybumpkin I know it's easier said than done but you need to distract yourself when you get those thoughts, maybe see your gp about anxiety?!
I have invasive lobular cancer and ductal cancer in situ. I have just had my mastectomy and DIEP reconstruction surgery. I tend to have those what if I don't get to see my kids grow up? And other equally awful thoughts in the depth of night. I've now started doing deep sleep meditation and taking kalms tablets. Always here if you want to chat xx

@daisypond The Breast Cancer Now charity also have some helpful information on understanding what the terminology of different grades and stages mean, see here: www.breastcancernow.org/information-support/facing-breast-cancer/diagnosed-breast-cancer/cancer-grade-size

I wasn’t very clear on where I was after getting my results either, but reading through that guidance and speaking to the breast cancer nurses helped. This site was one the nurses recommended to me (along with Macmillan).

While I did also have to get the diagnosis in writing from the consultants for my employer and my insurers, I must admit I avoid rereading that letter as seeing it in black and white still gives me chills! I was grade 3 stage 3 (inflammatory breast cancer) at diagnosis in October, and herceptin positive but only borderline oestrogen positive.

Thanks, @Piggles. I think it’s that I don’t have any details at all of the results re stages, grades.

Sorry, meant to add that the same site also has a useful list of questions to ask about your results, here: www.breastcancernow.org/information-support/facing-breast-cancer/diagnosed-breast-cancer/diagnosis/questions-you-may-want-0

Cross posted, aarrgghh! Sorry about that.

Do you have a breast cancer nurse assigned to you that you can ask, if you aren’t due to see the consultant again soon? If not the consultant’s secretary may be able to send you a copy of the pathology report?

The specialist nurse is your friend! I had a number to call her when ever I had questions and each chemo she had a chat in case I had questions. It's overwhelming I know ( and I couldn't sleep last night stressing because I have a new symptom but biopsy is on Monday) . If you can take someone with you so they can listen really hard and maybe make notes, that helps. When my DH had a biopsy a few years ago I was chief note taker. When DD had her cancer I did it again. On Monday DH will be with me. Huge hugs to everyone waiting results or unsure of what if all means.

Btw our dog had his biopsies on Thursday so soon we will now if he will be here to cuddle much longer.

Thanks, @Piggles39 and @Sooverthemill - yes, I have a keyworker nurse. I suppose no one will be there at the weekend, and it’s just since yesterday that I began to realise a lot of you here seem to have so much info that I don’t.

@daisy no one will be in the office at the weekend but once you start on any treatment you will have a 24/7 telephone number that someone holds all the time for example, if you have a temperature . When DD was an inpatient we saw the nurses with the phone literally in their hand all the time ( teenage cancer trust ward). But for now I'm afraid it's wait until Monday to ask questions. I'm so sorry, it's awful I know,

Ok. I have my medical pre-assessment for surgery on Monday, so I can ask then.

Glad other posters have mentioned Corona risk prevention.

I asked my consultant about it on Thurs. I'm 78, having chemo for bowel cancer and it's a 4 bus round-trip to the hospital, just for bloods. There used to be a protocol that prioritised chemo patients, but then it changed, 'because there are too many people in the queue'. All the more reason to see us first? I had to sit for an hour and a half in the general Outpatients area, full of sick people.

Consultant agreed with me and said there should be a fast-track but wasn't aware of any special measures for immune-suppressed patients yet. This is a satellite hospital for King's, which already has 2 positive cv patients. Not a single HCP was wearing a mask.

It's not that I'm specially alarmed at the moment. Just irritated at the disconnect between the messages parroted by politicians and what is actually happening on the ground.

King’s is my hospital. Trying not to think about the cv too much!

It’s a very steep learning curve!

Some of the best advice I’ve been given is to stick to sites like BCN and Macmillan and to avoid the natural temptation to google at random - my consultant pointed out that treatments are constantly changing and improving, so you risk coming across outdated information, particularly on something like survival rates, and scaring yourself unnecessarily. He also warned me that people are naturally much more likely to post online when things go wrong, than when they’re going ok, so there can be a bit of a bias to the negative in what you might find online due to that factor too.

I hope that makes sense, after three months of chemo my brain is not at its sharpest!

Morning, there were so many tagged messages that I thought I'd just say a general thank you to everybody for lovely, kind and supportive words. I got drunk last night, I probably shouldn't have but that's what I did. Slept like a baby thankfully. My boob looks horrific today. I am not in any pain though, just very very bruised. I am still quite calm about it all which is weird for me, I am usually such a panic merchant! It's going to be hard to wait for results and I continue to hope that this will turn out not to be cancer. You have to hope don't you?

Sending love to all of you amazing ladies who are showing such fortitude with what you are coping with

@Thymeout when My DD was having chemo we were allowed to have bloods drawn locally 3 days before chemo due and sent to hospital ( because hospital 2 hour ambulance trip away and DD so sick she can only travel by ambulance). Ask if that can be done now?

Greetings, Daisy. I'm at the PRUH. Troubled history. New building 'but same people working there', as my GP said. PFI financial probs, taken over by King's, but new, improved protocols seem to take their time percolating to lower levels. However, I have a brilliant surgeon and decisions are made by the King's MDT, so no complaints there.

I don't think you'll know the details till post-op and path results. The extent of my tumour and recommended treatment only became clear afterwards. But I get a copy of every letter sent to GP, which I've found v helpful, tho' it seems to take admin 2 weeks to post a letter dictated by my consultants the day after clinic.

Good luck with your pre-assessment! Thomas' had a one stop system (for a different issue) but I had 3 pre-assessment appointments at the PRUH. Perhaps because I'm older now.

Sooverthemill

Good idea! I could drive to my GP and nurse could do them while I'm sat in the car outside. Will ring on Mon.

@Hippiechick162 I got some anti anxiety meds yesterday. I hated taking any sort of medication so took half before bed last night and seemed to sleep better. Still woke up thinking horrible thoughts though.

Sorry Ive been a bit self indulgent in my posts. I know others are going through this too so for you all

@Thymeout people are usually helpful with a cancer diagnosis/ treatment. I hope it works

@DaisyPond, have you never had a letter copied to your GP? Ask your GP what they've been told.

This is mine.

Good morning all. I haven't had a proper catch up for ages!
This one's just a shout out to people I haven't seen for ages, I was looking through my spreadsheet and wondered how you are getting on. Of course completely understand if you don't want to post.
@Ellenanora, @DaisyBD, @Clogsaregreat, @Doreenseatinghersoreen, @elspeth18@, @EmperorBallpitine, @fudgesmummy, @iVampire, @izzyb, @LM753, @likeazebra, @minxmumma, @MrsL17, @MustardScreams, @Nellsephalent, @porolli, @rumred, @Sickandscared, @sparkysalmon, @TenaKween, @TheHagOnTheHill, @whatagoodideahesaid, @whythoughh, @Yoshimi, @YoureaQuizardHarry.
Hope all is as good as it can be for all of you.