Cancer support thread #76 - newbies welcome!

[Bloodybridget]

Here's the next thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, please look for other threads; there is one in Life-limiting illness for partners - link to latest. This one is for cancer patients ourselves.

I had a smear test at the beginning of October and mentioned that I’d had a bit of unexplained bleeding in the last month. So had a few swabs and sent for an ultra sound.
Beginning of November, had a call from the nurse at my surgery to tell me my smear is abnormal, the next day an appointment letter arrives for a colposcopy on Friday.
Colposcopy appointment comes and no issues with my cervix but an issue on the vaginal wall. Consultant called in to take a look and biopsies taken. Consultant says that it is most likely cancer.
Sent for a CT scan on the Wednesday and the following Monday I have a call telling me that there is an area of concern in my left breast.
Referral made to the breast clinic and I get a same day call inviting me for an appointment the next morning.

Mammogram, ultrasound and biopsies taken and a whisk marker inserted - initial diagnosis is cancer.

Got home and a call from gynae asking me to go for an MRI and PET scan, probably this week.

I feel like I’m in a whirl, they might be linked and I’m waiting to be referred to the private oncologist I want to use.

@littlebillie

Hi All I was on here 8 years ago with a rare controlled cancer which is although incurable has been manageable. Tuesday my world changed and there is a new cancer present and I am awaiting diagnosis tomorrow I'm very scared

Hi All, that post was three weeks ago and I was admitted on 2nd Dec and after stabilising infection I am now 96 hours into 168 of chemo. Fairly serious fairly scary but I'm doing okay. May have to repeat this cycle a few times. I'll keep you updated

@Bloodybridget hope you and your dp are managing with lots of support. Dh had his scan - now waiting for new op dates. But he's well right now.

@BitOfFun Very sorry to hear you are feeling poorly.

@MrsPnut Very worrying but hopefully things are moving quickly and you will get answers and a plan soon.

@littlebillie It must be so hard to have to go through this process again - I dread that and I've only just started!

Been quite poorly but mellowing a bit now. They're making some adjustments to drugs for next time. Got my chemo moved to day after port installation rather than day before - but still nervous about having them so close together. Anyone used their port within a day? I know technically you can use it immediately I'm just anxious because it will not be healed in yet and my last chemo was so grim.

Sorry that you’re here MrsPnut but welcome to the best thread no one ever wants to join. This first bit is one of the very worst - when there’s a good chance things are badly wrong but you don’t quite know yet. What sort of RL support do you have?

I’m having an ‘oh fuck’ day. DD is being sent home from school to SI until 28/11 because she’s as close contact of a confirmed case at school

Acinonyx2 I had my port fitted the day before my 2nd chemo. It was a bit sore round the port, but the chemo was so much easier! I'm a nightmare to cannulate, which made the first chemo harder than it needed to be, but with the port it was very straightforward. They don't warn you before having the port, but it's painful sitting up from lying down for a few days. It's because when you sit up, you tense your neck- I had to literally roll out of bed for a few days, but it was only that movement that hurt. It healed really quickly, and doesn't hurt really when they fit it (momentarily unpleasant when they put it in, but doesn't hurt). I'm a complete coward and can honestly say it was definitely worth having it - blood tests, chemo and antibiotics can all use the port for access - no more routing around for a suitable vein, vein collapsing and multiple needles! Good luck with it.

@Zorgothslugofdoom Thanks so much for that - I am a total total coward. It will be same for me - day before 2nd chemo.

@Acinonyx2 My port was put in late on Friday and used early on Monday - so not quite the next day, but it was definitely still bruised at that point. But it was fine! They only really touch it twice - once to put the needle in, once to take it out. So you will be totally fine and you won't regret having the port, I am sure!

I've just moved on to the second half of chemo and am now on Paclitaxel - every two weeks, four cycles. I was really worried about the change, but I feel so much better than I did on EC! I had chemo on Monday and it might still hit me... But so far, so good! I am not feeling mega nauseous for once! YAY!

@MrsPnut There are quite a few of us here with breast cancer, so please feel free to ask questions or just rant if that helps. The beginning part is the worst, I think - all those tests, and the story keeps changing! It gets easier once you have a treatment plan, or at least that's how I felt.

Sending love and to everyone on the group, even if I am not a genius like @Bloodybridget who manages to respond to every single person on the thread every time .

@KentishMama Thanks - did you just take paracetamol for the pain after the port went in (I know I need one just anxious...).

@Acinonyx2 I think I took paracetamol on the way home or just before bedtime on the first day, but it wasn't really needed. I just felt a bit achy and bruised especially as I kept forgetting about it and touched it accidentally.

Ah @KentishMama I'm completely incapable of keeping up with everyone atm, having a fairly horrible time with sickness today. But I have been reading, and send commiserations to everyone who's having difficulties, including @MrsPnut and @littlebillie, and @BitOfFunof course. Hope to feel better and be up to speed in a few days.

Thank you all, I do have some great support both in real life and also virtual. I was a bad mother if any of you have been around long enough to remember that forum.

The waiting does really suck, and work colleagues keep calling to offer support and all I want is to be left alone to plod through the days trying to get work completed.

I’m having an “oh fuck” day too @iVampire. (Not sure if I’ve introduced myself on this thread - I had a malignant melanoma on my vulva, so had half my vulva removed January 2019, and have had 2 more ops this year to remove pre-cancerous vulval skin).

I had my monitoring scans on Monday and the CT PET scan showed an area of “activity” in my breast, so I’m off for an ultrasound And possible biopsy tomorrow (I’m very lucky to have health cover from work).

My lovely oncologist also sent me home with citalopram prescription- I’ve been doing a ridiculous amount of crying over the last few months. It’s irritating how much cancer messes with your mind even when your body is behaving itself.

Waving to everyone, especially newcomers, and gentle hugs to @BitOfFun and @Bloodybridget x

Hope it’s ok to park here a moment. I am waiting on a pelvic scan and blood tests. My symptoms are persistent period pain spreading to the right side. Combined with bloating and back pain. When I went to GP today she said the pain I am feeling when she presses down is womb, ovaries and bladder area. She also requested some bloods which I glanced at an saw one is an Ovarian Cancer marker. Am absolutely terrified as I am early 40’s with 4 children and have become aware that this is one of the “bad” cancers as no hope of remission. Literally terrified.

Iamsodone There is always hope of remission and there is always a possibility.

Like you, I am at the start of my journey, but they could see my first cancer and found the second through a CT scan. Things have moved quickly for me and hopefully they will for you too.

@Iamsodonewith2020 welcome to the group that no-one wants to join but is also the nicest and most friendly group on Mumsnet. I am a tiny bit further on from you, I have had a biopsy on an ovarian mass, I have a seriously raised CA125 and am waiting for a formal diagnosis. Yes, OC is one of the bad ones but that is because it is usually diagnosed at an advanced stage having been mistaken for something like IBS rather than it being difficult to treat in itself. This isn't always the case though and you can go into remission with it. You are young to have it (if you do) and that is a big factor to a much more favourable outcome. I truly understand the terror you're feeling, I am the same and the waiting is awful.

Has anyone privately funded initial scans etc? Is it easy to get results transferred to GP. And will it speed up everything or will NHS stil want to do their own scans before proceeding if the worst is found privately?

I’ve had quick movement on the NHS. I’ve not waited more than a few days for appointments.

I know it feels scary, and you want to move it along but some things like biopsy results take time whether private or NHS.

My GP said the scan could be months???

What has the GP referred you to? Gynae, Oncology?
I had a referral to gynae because of a smear and things have moved quickly from that.

Referral is to gynae and also full pelvic and abdominal scan. It’s the scan she said will be ages. I haven’t had bloods yet so she said she will change the nature of rerral

@Iamsodonewith2020 if they suspect cancer they won't leave you for months for a scan. I had an ultrasound scan at the initial gynae appointment. If you need a CT scan then it might be worth ringing the imaging department yourself directly to see if they have a cancellation. I got one the following day.

@Iamsodonewith2020

Hi I'm currently in same situation I'm in agony with a bloated stomach pain lower left especially on period I'm under gynae & gastro. Had ca125 test came back ok but Iv family history of endometriosis bowel cancer & fibroids. Iv been so unwell since June and I'm still unwell now.

I had the blood test fast, abdominal ultrasound & gynae scans the same week I requested them. Things kind of got a bit slow after things came back clear. My stool sample was also negative for bowel cancer check/ inflammation ect I'm due to have a ct colonoscopy & endoscopy but they said it might be next year now. I'm in agony with it all so upset waiting. I can't help you but just know you're not alone

Itonlytakesone thank you. I can’t confide in anyone IRL as I feel this huge pressure to protect them. So angry at myself too as I cancelled private medical insurance to cut costs during Covid. I had it 13 years and only used it once. And now I need one.....

@Iamsodonewith2020

You should definitely mention it to people I tell them everything ..it's not nice to deal with things alone and if you're a bit off one day you don't have to pretend to be ok, which is too difficult for me right now. I had private healthcare with my job (15 years) but just started a career break so I'm not covered either.. but if it helps I'd probably not get any faster diagnosis anyway

Hello to all
So sorry you're feeling poorly @Bloodybridget and @BitOfFun. Hope that things pick up soon.

Good luck with the port @Acinonyx2. and I hope the second lot of chemo is easier to manage. How is your DH doing?

I hope that things continue to move quickly with scans and appointments @MrsPnut. AS others have said, the waiting feels like the hardest time.

It's very common to check Ca125 with any gynae and lots of bowel problems @Iamsodonewith2020. If it comes back as raised then the scan will be changed to an urgent one, as will your referral to gynae, so you really need to wait on that. And, as others have said, there is always the chance of remission even if you do end up having cancer and - nicely - I think it's worth watching how you phrase things on here. Lots of people on this thread have a diagnosis of ovarian cancer or are awaiting confirmation, and talk of no possibility of remission is both not true and rather unhelpful. Maybe that's just me though - having a gloomy few days, and want to try and stay positive.