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

@Bloodybridget. Did last night what dr told me not to and googled. Apparently a rectal polyp over 2cm is at greater risk of maligency so this sent me into bit of spin as mines is 2.5. But as you say hopefully soon I'll get a clearer picture

@SnowsInWater I hope you get reassurance this Friday about your scan. I think I worry more about what a diagnosis will mean for DD more than me. She's an only child and we are very close (as much as you can be with a teenager lol).

On a positive note I've moved through the system pretty quickly. Dr said that covid changing the way they do things. The hospital was pretty quiet yesterday. More staff than patients. 😷

Have a good day everyone!

Just popping in again to send commiserations and good wishes to @Lurkeycakewoman, waiting for full results and treatment plans is hard. This thread is a centre of excellence for breast cancer experience and support, you will have help every step of the way.
@SnowsInWater hope you get the scan results quickly so you don't have to speculate too long.
@gillmoregirl we all succumb to the temptation of googling from time to time, and usually scare ourselves silly. If you read things that worry you, I'd suggest writing them down so you can ask a doctor or Cancer Nurse Specialist about them.
@Trumpton so sorry your poor chest is sore again. I know you can usually get appointments and treatment quickly where you live, so I hope that is still the case.
Sending warm wishes to everyone. I was looking back through old threads to last year when I was going through diagnosis and treatment, and I got so much support and kindness here, it was brilliant. It was really important for me to have somewhere to say anything about what was going on for me, without having to worry about upsetting or worrying someone else.

Hi everyone

At work today and just got call for MRI next Monday. Feel bit shaky now. Trying to maintain composure. Unsure what to expect at MRI. Any information/advice very much welcomed. Thanks.

@gillmoregirl I've had a couple of MRIs over the last few months and they were ok. The machine is quite loud but you wear headphones, so they can talk to you while you're in there, and they can play music to drown out some of the noise. For the breast scans I had to lie face down with my breasts dangling in two holes (not very ladylike), so I couldn't see much and just kept my eyes closed. You can given a button to press if you find it all a bit much. My scans were about 30 mins each time but that will vary between types of scans.

I hope everything goes well for you. I know it's hard not to worry but it sounds like you're in good hands.

• you're given a button

@barberousbarbara that image you painted gave me a wee giggle although I appreciate it wasn't funny for you at the time. Good to know that you can alert them as I'm a bit claustrophobic and worried bit about that. 30 mins is a bloody long time 😩.

I'm going to have to pull my big girl pants up and try to be less anxious about these scans and things. Unfortunately I'm a worrier and anxious by nature.

Hugs to everyone who needs one right now. 🤗

@gillmoregirl you're not the only one who laughed. My friends and family all think it's hilarious, particularly as I'm petite with large knockers (or knocker I should say now). If it helps, I know 2 people who fell asleep inside an MRI scanner. By the end of my 2nd scan I was relaxed exhausted enough to start to drift off.

It's perfectly normal to be worried. I was told by my surgeon that I would be referred for radiotherapy. It would be done through my oncologist but I wouldn't be contacted by the oncologist. I've just had a call to say my oncologist wants to call me on Monday, so now I'm nervous. I'm sure it'll be ok and you will too. Sending you hugs.

Gillmoregirl

With any luck, if your MRI is to investigate only the rectal area, your head won't be inside the machine and it won't feel as claustrophobic. Mine (ovarian) was originally going to be just pelvic until the technician asked if the tumour was palpable. It was v large, extending to my midriff, so he had to do abdomen as well. He'd previous told me I'd be able to have my head out, but this had to change.

At my hospital, you were able to bring a CD of your choice to listen to.

Good luck!

@barberousbarbara You are so right hard not to worry! Hateful for you to have to wait until Monday but if it was something to worry about would they not call sooner?

I hope that's the case for you and Mondays beings some reassurance about your plan.

Just had call from hospital colonoscopy 19 May. Afternoon appt and I've got instructions for preparing for morning appt and guy wasn't sure if I should take one prep the night before and second drink at 6 this next morning. Will have to ring consultant secretary to clarify

@Thymeout I'm using phone so hard to read previous posts so just wanted to ask how you are? It would be good to think that head outside machine but surgeon asked if I was claustrophobic I said yes. His response (delivered kindly of course) was you'll be fine just get it done.

Hello to everyone I'm sorry I'm so crap at remembering everyone individually.

Gillmoregirl

I'm fine-ish. Ovarian tumour was 5 years ago and turned out to be a Borderline. Not cancer. But 5 years' monitoring, just in case. On the last scan, they picked up a thickening in my transverse colon. No symptoms. No connection with ovarian issue. V lucky that they found it at that point.

Straight to colonoscopy, no MRI. Surgery at end of October. Stage 2. MDT said chemo was optional, but when it looked as if I was going to say No, oncologists suddenly became a whole lot less neutral. Just oral, no infusions. Nothing like as brutal as for breast/ovarian. But made me v, v tired.

Did 4 out of 8 cycles. Then covid. Onc and I both agreed to stop. New research last summer apparently showed max benefit delivered in early cycles and risk of permanent side-effects from continuing for the full 8.

3 weeks from stopping chemo. Energy slowly returning. Will be re-scanned at the end of the summer.

Sorry, I can't find my colonoscopy instructions. Mine was a p.m. appointment, too. Prep wasn't too bad. Just felt very hungry. You need a responsible adult to take you home because of sedation. But doc told me at the time that he would be v surprised if biopsy came back negative.

Size not necessarily bad news if it's spread out over surface instead of burrowing thru to outer layers. Scan is to rule out mets and node involvement as that affects treatment. If it is malignant, whether to do chemo before surgery or vv. But other things cause 'thickening', too.

This really is the worst time, the not-knowing. My GP put me on a low-dose anti-depressant, with valium till it had taken effect. It really helped.

Had my first radiotherapy session today. Due to covid I'm only having 5 treatments, instead of the normal 15, but they are all triple doses, so I'll be having as much as they would normally give, but it cuts down on number of hospital visits and chance of infection. I've been warned that the side effects will start quite quickly, and are likely to be more severe - trying to prepare myself for fatigue again!

Take care everyone - hope you're managing to enjoy the sunshine.

@Zorgothslugofdoom hope you don't have too hard a time with the rads. Be very gentle with yourself!

@Thymeout So sorry to hear what you've been through. I hope you continue to gain energy and feel somewhat better soon.

Don't worry about prep instructions. I will ask when I'm at mri on Monday.

I hover between not wanting to know and worrying cause I don't know. Scared in case I have wasted time putting symptoms down to something else.

@Zorgothslugofdoom Ive nothing useful to say but sending best wishes.

Will return to lurking until I've some more clarity .

Hugs and best wishes to all. X

Hope everyone who is having tests gets through them ok, my hospital is pretty much business as usual with some precautions but obviously the Covid situation here is very different to the UK.

Just spoke to my radiation oncologist who was the guy I have been dealing with through the PET and subsequent Ultrasound. He is happy with the Ultrasound and said if it were liver Mets it is pretty much unheard of for there not to be multiples and two sonographers agreed they could see absolutely nothing. It is reassuring that he liaised with both my surgeon and medical oncologist since I spoke to him last, basically I will have a whole raft of blood tests in a couple of months and if there are any sign of liver issues they will do an MRI but they would prefer to hold off for now as they feel it unnecessary. Big sign of relief, I can go back to trying to pretend I am a normal person again now 😁 Will keep lurking, lots of good wishes to all xx

@SnowsInWater
Lovely to hear from you .
I am having a night of small naps . Feeling very flat and lacking motivation to do anything , my skin expander is still not comfortable and is not helping .

Good wishes to you .

Phew, @SnowsInWater, that is pretty reassuring.
@Trumpton sorry you had a bad night. Do you think anything could be done to make the skin expander more comfortable?

The bcn said that strangely inflating it slightly might help as it should sit more firmly in muscle pocket which is why she was hoping to get me in this week .
Ibuprofen during the day when needed and trying to sleep on my back and the odd tramadol at night .

I’m back with a few worries. I had a lumpectomy for pleomorphic lobular bc mid March. Due to Covid restrictions, follow up appointment was done by phone. Dr said tumour was twice as big as expected, but there was no further treatment. Come back every year for mammograms. All over, I thought. But I later phoned bc nurse for clarification on things, and it turns out there were not clear margins on tumour they took out. Neither did I have sentinel lymph nodes looked at, or a scan, or any suggestion of any further treatment. I’m now concerned whether I have been treated correctly, or if this is normal? I was at the time one of the worst affected virus hospitals in the country. There’s a part of me that thinks they wanted me out of the system quickly. Also, the fact that the tumour was twice as large and it just didn’t show on the mammograms - so how will any future mammograms show anything abnormal at all?

Hi everyone - I've got a quick question. For the last few days I've felt extremely dizzy and lightheaded, to the point where i think I'm going to faint - more extreme when i stand up, but now when I'm sitting aswell. I'm anaemic, but not severe, and having radiotherapy now. Has anyone else had this? If so, what caused it and what made it stop?

I've only had this twice so far. Once in the shower. So I had to just sit down. And again yesterday walking to get a drink. Not sure why it happened.

I'm week 2 into treatment. 10 radio sessions and 2 chemo. Also my hands feel like they are going a bit numb now.

@Zorgothslugofdoom could it be dehydration?

I had something like this, plus vertigo, 10 days after stopping chemo. After ringing the 24 hr Chemo hotline at Guy's, a brilliant nurse decided I was dehydrated. I think she was right. Looking back, I'd got lazy about drinking enough. Relied on fizzy sweets to freshen my mouth rather than trekking to the kitchen to make a drink. The pads on my fingertips were looking creased, 'washerwoman's hands'.

I now have a jug of water with a splash of squash always by my side and haven't had any trouble since.

It was really scary. I thought I'd got sepsis. But normal temperature and no headache.

I phoned the Christie Hotline and got advice from one of the consultants; they think it might be labyrinthitis or an inner ear infection, and I then had to phone 111 and had a video consultation. Been prescribed something, so will see if it helps.

I don't have a temperature or headache, and have been making sure to drink enough, so will try the new pills and see what happens (they take a few days to work). Thanks everyone for your suggestions!

@daisypond, that sounds crap tbh, I would be concerned about the lack of clear margins. If your oncologist isn’t accessible/approachable can you talk to your GP and push for further testing, at least a scan? If nothing else living with health anxiety will drive you nuts so I would push the mental health aspect if they are not being helpful.

Sorry you are having trouble @Zorgothslugofdoom. Hopefully the pills will work but Radiotherapy can do strange things to you. I got dizziness sometimes for no particular reason.

Daisypond I'm guessing your either in london or Birmingham? I'm not really up on what's normal and what's not but not clear margins needs to be addressed and your lymph nodes have they made you a face to face appointment? I was diagnosed right at the start of this covid crap and the only problem I've had is my results after surgery taking longer to come back.

I had my first chemo Friday the only feeling I can give you is drunk I felt pissed as a fart all evening I couldnt sleep 😂
Today I've been tired and napped here and there now I'm wide awake and starving I had to give myself an injection today pelgraz? That's made my bones ache but nothing that's too uncomfortable it's just like I've walked too much today ( I havent)

Zorgos my friend got labrynthitis with her radio she still suffers every now and then almost a year later