Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

Fantasea Im waiting on my blood results too, my CT scan was cancelled because my kidney function is so reduced. Got a phone appointment with yet another Consultant I havent met on Monday, so have a list of questions.
I am very down at the moment frightened of the future. I need another cruise or something to take my mind off things, being alone all the time makes me concentrate on the bad things !

@thereisonlyoneofme oh yes, I remember you saying about your cancelled CT, that must be awful. What I hate about this is feeling so helpless when things like this happen. I'm currently adding in fretting over my list of pre-worries about my appointments next week, I'm so mad that these extend to not waking up in time to go, the car not starting to take me and also not finding a parking space even though I leave loads of time. It was this time of year two years ago when I was fighting for months to get a diagnosis and the change in weather has taken me right back to that time when I felt so defeated. I'm really hoping your new consultant will be able to answer all your questions on Monday.

@Toastandmarmiteandtea
Yes - seeing 'suspected gynaecological cancer' in print is a real body blow. But if they don't say that it might be cancer, you won't get a 2 week referral, so needs must.
I had the same 7 years ago, a week after a top consultant had told me 'well, I think it's benign'. And it was - a Borderline Ovarian Tumour - but it was ginormous, squashing one of my lungs and there could have been some malignant changes hidden inside it, so he needed to justify a priority place on his surgical list. Btw, my Ca125 was 130. Yours is minuscule and more likely just an inflammation. But best to make sure.
The other thing I'd say is please don't hesitate to get help for your anxiety. My lovely GP put me on a low dose of anti-depressants and valium, as and when, till they kicked in. Took away that dreadful sinking feeling and I could eat and sleep more or less normally again.

Thinking of you and all the others in limbo.

@Bloodybridget

So sorry to hear your news. I remember the Patience Inn. Quite a few of us could do with the chance to pull up a chair and settle down for a chat with sympathetic companions at the moment.
This thread, started by MaryAnnSingleton years ago, has been a godsend to so many women and I hope it will be a comfort to know how many of us want to thank you for your part in carrying the torch.
Much love.

Hi all, posting as a possible fraudster. Had core biopsies taken on Wednesday from huge lump in the boob. Was told I'd get a phone call on Tuesday with results. Really struggling today to keep my head straight. Am a single parent with 5 smalls so was obviously doing really well holding myself together then utterly disintegrated on the floor 5 minutes after they went to their dads yesterday and haven't quite managed to pull it all back yet. Thankfully they're not home until tomorrow evening.

My list of symptoms includes horrific pain (that has eased now), a fast growing lump, dimpling and itchiness. The doctor said well its not in the lymph nodes yet. But he was talking to himself not me. US scan showed no liquid so not an abscess as was initially diagnosed. I've done 2 weeks of flucloxacillin and now started a week of coamoxiclav.

Have some truly glorious bruising now and back to the 'normal' tenderness and mild pain that I had before biopsies. I've googled everything but tried to stick to NHS and cancer research websites where I can.

Don't know what I'm asking really. I prefer knowledge to being kept in the dark. So obviously fingers crossed they say well its nothing to worry about but if its anything else, what happens next??

@marykateashley fingers crossed that you are an imposter, if not then at least you know that things are going to be dealt with x

Hi @marykateashley and welcome to the thread nobody wants to join. Hopefully your stay will be short and sweet.
When you go back for biopsy results it will either be a benign diagnosis and off you go like 90 percent of the patients at 2 week wait clinic, or not.
If it is a cancer they will tell you firstly what type they think it is, and what the markers have shown. They will give you written information to explain this because your head will be scrambled and you won’t take much in. Then they will tell you whether they want you to have CT or MRI scans or bone scans, and what they think the best treatment plan should be. Sometimes they wait for scan results first but mostly they dive straight in. There will likely be a debrief with the specialist nurse who is your ally and will listen to you and chase up stuff if she is any good. It is all very hard to take in and numbness and disbelief and rage are the most likely reactions.
I found it helpful to keep as busy as I could while I waited, tidying and weeding and decluttering madly. I used the Calm app and practised meditation for the anxiety but didn’t sleep much. Once you know what is going on even if it is bad news you will feel better than you do now. This is the worst bit! I found that hard to believe but it is true. We understand and if you need to download, rant and rave and plan your funeral we are here to listen.
Sending strength
Top

Thank you both @fudgecat and @topofthecliff

That information really helps, I prefer to be prepared. Hopefully Tuesday will come round fairly quick and I can sort my head out a bit

@marykateashley I am 37 with a 6 month old baby and was diagnosed with breast cancer at the beginning of September. Once I was on the two week pathway, in hindsight things have moved incredibly quickly, but while it was happening time felt like mud and the waiting was taking my breath away at times. I went to my GP about a lump on 15th August, and since then:

• I had an ultrasound, a mammogram and a biopsy
• confirmed as cancer and I had a lumpectomy and sentinel node biopsy
• 2/3 sentinel nodes were cancerous so I had axillary node clearance surgery (clear)
• I’ve had a CT and bone scan and the results of those
• I have my oncology appointment on 31st to discuss the chemo/radio/hormone treatment I will have

I hope hope hope you don’t end up down this road but if you do, the waiting is the worst bit. Since this all started I find I swing between numbness, rage and utter despair.

@Bloodybridget I have no words! 😢 You have been so kind.to me on this thread that nobody ever wants to join. Thinking of you. And thank you. May your time, however long/short be as comfortable as it can possibly be in this shit situation. Bloody hell, I hate cancer! Insidious bastard! 🤬

@TopOfTheCliff as a fellow second rounder I have been following your “round 2” - sending you every possible fibre of good luck to get through it again. I am still swimming in the stinking shitshow that DH’s brain tumour has so kindly set up for me. Life is completely passing me by, it seems. I think I will break at some point. Definitely will.

@balkanscot I think of you and your family often and wonder how things are going. Breaking would be quite understandable. Sending love xx

@balkanscot i often think of you and your family too and you are bloody amazing to even keep swimming at this point!

@marykateashley I'm just recovering from a lumpectomy and sentinel node biopsy on Wednesday so was recently where you are (although I arrived there from a routine mammogram and didn't have any pain so very different to your case) like you I prefer to know what I'm dealing with, my advice is to ask lots of questions, they will tell you more if you ask than they will offer voluntarily in my recent experience, because not everyone wants to know.

I’m really struggling with anxiety this evening. I think because it’s half term and everyone I know is away so it’s just me and the kids and they wanted a lazy day. My mind is going to worst case scenarios because the prognosis for the type of cancer I would have is so poor. It feels like there is no hope.

im also struggling with the fact I thought I’d hear from MDT on Tuesday and now it’s at least an extra weeks wait. Tbh I really just want a hysterectomy now so I can have a biopsy and know. I will have to contact my GP on Monday and try and get something I think.

Apologies my message reads as so self indulgent when so many of you already have diagnosis and are struggling

You are absolutely not being self indulgent @Ridingladybugs, your feelings are real and totally understandable. Everyone here says that the hanging around waiting is the worst. Certainly seems like a good plan to have a word with your GP. I hope you can find a way to pamper yourself this evening - think I'm just going for a lovely warm bath, and may just get my hands on some chocolate!

@ajandjjmum I’m drinking wine For the first time in 8 months. Decembers 6 month check up is looming and ………

@Ridingladybugs I hope your visit with us is short but in the meantime pls don’t ever apologies for being how we all once felt. Xxx

Thanks both. Will try and relax when I’ve got the kids to bed. Hope you both have good evenings

I have also ordered a learn to knit kit so that should be interesting when it arrives given my zero practical abilities!

Fantasea I have had consultants phone appointment today. CT scan is being re arranged, without contrast. My CA 125 has gone up 2 point again, still within the normal range but over the past 14 months it has been 14 or 13, now its been 16 for two months, so panicking that my normal life is going to be over again. Also mention on notes of Diabetes, I dont have this as far as I know, but never actually had a diabetes test. Another possible problem on top of the OC,
Atrial fib, kidney disease !
Hope you get good results

To add. I wish they would restart face to face consults. the lady I spoke to had a very strong accent and i found it really hard to understand her. If you have face to face you can lip read and it really helps in this situation

@thereisonlyoneofme I'm pleased you have got your CT reorganised, what a worry that must have been for you. I'm sorry your CA125 is still up, I get my results for that tomorrow and mine was up 3 points last month. How have they concluded you have Diabetes without a test? I wonder if it was a data inputting error possibly? Recently, I had a coded entry on my NHS GP record on a certain date for a reminder about a flu jab and also an update to my non-smoking status that I was now apparently a casual smoker, both inputted at the same time! I've never smoked in my life so this was clearly someone hitting the wrong button (and I've now had removed) but it made me wonder what else goes on our files which we don't have sight of.

I find the face-to-face appointments are more productive in terms of the way the conversation flows.

Is a movement of a couple of points of CA125 significant, or is this just within the normal variability? Especially if it's under the cut off point. I can appreciate it's probably impossible to know for any individual and it's anxiety provoking in any case. I'm waiting for my updated measure after chemo 3, although it was only 4 before I started so it's not got much potential to go down.

Hello everybody - and welcome to new faces, and my sympathies to everyone having a tough time.

I've been lurking for the last 10 days, having been so consumed by anxiety about my scan results I couldn't face posting. I'm very relieved to have had good news today. I was expecting a results appointment later in the week, but my BCN called to let me know my liver MRI was clear (two anomalies/lesions which are both benign). As much as the result itself, I'm also very pleased to have dodged the emotional build up to another results appointment. So I am good to start chemo, with an appointment next week, assuming bloods and ECG are all clear, and I don't catch covid in the meantime. One welcome side effect of the false alarm has been that I am positively relieved to be able to start my next phase of treatment, however gruelling, and feel much more positive than I did when I first heard what the treatment plan was. Thank you to everyone who kindly offered reassurance when I was so upset about the initial CT results.