Cancer support thread #73 - come in, we're here for you.

[Trumpton]

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 is HERE

Current members, please do introduce yourselves smile

Morning ladies. Am looking for a bit of advice.
The gynaecologist sent me a letter on Thursday, confirming that I have an ovarian cyst as well as fibroids. I've an appt with him next week. However I've to go for a blood test (presumably ca125) beforehand "to confirm that the cyst is benign". At first I was pleased. Now I'm worried, but I'm not sure if I'm being rational??

1. I'm pissed off that I didn't get the blood text weeks ago when I had my first appt, or at the ct scan. Gynaecologist asked when I'd had blood tests (last year) then just dictated a letter requesting a ct scan for an abdominal mass. Surely bloods should have been taken then?
2. If it was a tiny or simple cyst, would they ask for the blood test, or would they just monitor it via ultrasound?
3. I have no info about the size or appearance of the cyst. Is this normal?
4. If it is cancer, or that's suspected, should I not be referred to a gynae- oncologist? Which would mean another delay...

I'm not going to lie, I'm worried that it's big and they're concerned, and the wording of the letter was just to minimise any worry. If that's the case, then it's not worked! I'm still huge, look pregnant and I'm uncomfortable. Am I being ridiculous and over thinking everything? Sorry for the long post, its been rumbling away all weekend.

Bloodybridget
No, not heard anything yet. At the Pre-op assessment they said my Aortic valve regurgitation/.stenosis has recently been discovered to be worse than previously diagnosed and despite the Cardiologist signing me off as OK after the recent Echo, I was told it is the decision of the anaesthetist not the cardiologist .
Hope you are OK after participating in that "Arctic expedition"

@Bloodybridget it was so cold last night, I feel your pain.

@TenaKween I have no experience to help, but I think it's common to try to rule more serious conditions out as a matter of course.
I'm sure someone will come along soon with helpful thoughts

Tenakween Things don't always seem to happen in a logical or even consistent order to timescale. I think that like you I would have expected them to do whatever blood tests needed to at the start but it is perhaps likely that they are just making sure to tie up loose ends now.

I think, from reading here, that some doctors are much better at giving clear information about what they have found than others. It does make a difference to have prompt and clear information and having it dribbled to you in bits is not helpful. At your appointment next week hopefully you will get more clarity or at least a chance to get your questions answered.

Bridget I felt cold even just reading your post! I hope you managed to warm up quickly.

Our family pre-Christmas lunch went well yesterday with lots of laughter and chat. Signs of the times though, second eldest grandson couldn't be there as he has a Christmas job at Tesco. As they all grow up, getting them all together will get harder. Eldest SGD still makes sure to come whenever she can though as she is 29 now. Today though I am officially shattered and we are off to London for a lovely lunch with BiL/SiL. We decided to do lunch together instead of swopping gifts and today we are off to the Michel Roux restaurant at Portland Place. Not quite Le Gavroche but not as expensive either!

And she is 29 now, not as she is!!

@TenaKween no idea if this is any help but my GP has done several CA123 blood tests. As far as I know it is not a diagnostic test, just an indicator. I don't think anyone is referred to an oncologist unless there is a definite cancer diagnosis. I would have thought a biopsy would be required for that. It's easy to say don't worry, but in my experience if the consultant suspects cancer things move very quickly and if they don't, they often do tests to be certain but at a less urgent pace.
They will have your blood result when you go next week and hopefully a plan.
@meercat23 Enjoy your posh lunch!

Hello all, the clinic called me today and the first available apt I can have is the 30th December. So that'll be 3.5 weeks after referral. DH will be about but he may need to stay at home with DS (8) so I may ask a friend to come with me.

TenaKween yes I'm surprised they haven't already done blood tests, however as someone else said, lots of people don't have raised CA125, I didn't. So the absence wouldn't prove you don't have cancer. You've had a CT scan, but no ultrasound? Of course you will be worried and it's very hard when you're waiting for tests and diagnosis, but I don't think what's happened so far is necessarily sinister. Crossing fingers for you.

MiniCooper really sorry you have to wait until after Christmas for the appointment. Just wondering if it's worth complaining about the long wait, just possible they might have a cancellation and be able to fit you in? Do try and line up a friend to go with you.
Thanks for all the kind messages, I haven't lost any fingers or toes!

meercat pleased to hear you had a lovely time with family, enjoy your lunch today!

bloodybriget I did have abdominal and vaginal ultrasounds 2 months ago, but he couldn't see my ovaries because of my huge uterus!
skap I will try to remember that. Suppose I'm just worried that things seem to be happening in a round about way, and that's making me feel anxious and worried that they're missing something. As you say, a week to go and all will be revealed...
Thanks for replying all, too feart to tell my husband that I'm fretting in case he worries. And I think that it must be worse for partners in a way, they're even more helpless!

Oh Tena. I know how you feel about not wanting your nearest and dearest to know you're scared, because then they'll be scared, etc. etc. But I bet if you did tell your husband, he'd say he'd been worried too and didn't tell you because . . . My policy now with DP is to talk and share. But I'm not saying that's necessarily best for everyone.

Just creeping in with a little update - went and cried at my GP this morning for no other reason than I felt I needed reassurance after a horrible day of MRI and CT yesterday. Didn't expect him to have access to hospital records but he managed to find preliminary MRI report that read "no definite bone metastases". He thought that was a bit vague, but others have suggested it's the result of a quick first pass and nothing alarming has leapt out? I'm struggling to feel reassured with the CT still hanging over me... biopsy results on Weds.

@Crispspsps at least it didn't say there's obviously bone metastases - of course not hugely reassuring though. Sending you virtual hugs and massive sympathy.

Sorry haven’t posted and haven’t read since my last so being rude shall attempt to catch up. Hope everyone is as well as they can be.

I had my first chemo infusion on Wednesday and have been having my chemo pills since. I don’t know how you do it.
How do you keep going when you know there is more to come? That even if you do start to feel better you have to do it again and it will probably be worse each time?
I should only need 4 before surgery if everything goes to plan. Which is so little compared to some of you but I don’t know how I will do it.
My husband has been amazing, well doesn’t really have a choice cause I can’t look after our little one. He is 15 months and doesn’t understand why he normally has me so happy and playing with him all the time and now he reaches out and I barely have the energy to hug him.

Have been having some chest pain and got sent in to A&E to get it checked out Friday night everything came back clear.
Struggling with food which I’m not really bothered about but I also with fluids. I know I need to drink more but can’t manage it.
I’m not allowed anything cold, room temp is supposed to be fine but I don’t think it is. It doesn’t start throat spasms but it isn’t nice going down so I am doing warm but just can’t get much down.
Awake at 3am every night and before that awake on and off getting hot. Thought I would have a great sleep last night as only do steroids for three days but nope.

Sorry for the very negative post but I feel like I can’t complain too much IRL.

Oh Squiffy, that sounds just horrendous. I can't offer anything to make it better, but please remember that people do get through it, and it won't always feel this bloody dreadful .

Ah Squiffy you have all my sympathy, so sorry you are having such a hard time with chemo. I really struggled to drink, not because I couldn't swallow, but all drinks tasted awful, water especially! But actually I don't think it did me much harm drinking so little, I was constipated on and off but took laxatives and ate prunes!
If you have been given immune system boosting injections, they are probably causing the chest pain.
How long between each chemo? If it's the standard 3 weeks, you should have at least a week of feeling reasonably ok before the next one. And ticking them off is some consolation for the awfulness.

Sorry you feel so miserable, Squiffy01. It can't be easy, with an oblivious small person in the house. You are allowed to moan and complain on here.

I have finally Done The Deed, and told the DCs. I tried to paint as optimistic a picture as I could, and it IS an optimistic picture, tbh! DD1 (18) took the news in her stride; DD2 (16), who was already suspicious, was initially cross that I hadn't shared from the start, although after a while she could see my reasons (didn't know what grade/type I was dealing with, DD1 away at uni etc etc). DS (20) sat there silently, then I realised he had tears rolling down his face, my poor grown-up boy. He disappeared to call his girlfriend, then came back and gave me a huge hug. He is a natural worrier, and has just started commuting into London for a new full-time job, so he's stressed already. He's scared.

They are all worried that it will come back to finish me off. I can only pass on the assurances of the oncologist; that the chance of recurrence will be greatly reduced by the rads, down to 1-2%, but I know it will never be zero.

And life goes on....

Squiffy Sorry you are having such a tough time with the chemo. One of the nastiest tricks if cancer is that the treatment is every bit as nasty as the disease of not more so. I had a relatively mild version of chemo and no little ones to look after and it knocked me sideways so you really don't have to feel that you cant complain especially here. As Bridget said, hopefully your cycle of treatment will include some periods when the effects of treatment let up a bit.

Cointreau well done on telling your DC. I found that the hardest bit and mine are much older than yours. I think something may just have rolled down my face too when I read about your lovely son! As for the fear of recurrence I think that is inevitable once this disease has affected us. At least the treatments we have been given, nasty as they are, give us the best possible chance of not having it come back.

Are your DC all back until after Christmas now? However long they are all together with you I hope you have a wonderful time.

Another one crying in sympathy with Cointreau's DS! Sometimes other people's sadness and fear is harder to cope with than our own. Cointreau hope all your DCs manage their worries, it's bound to be a shock at first but thank goodness you can reassure them in good faith.

Well I had my lump removed today and sentinel node biopsy. I am paler than I've ever been. Low blood pressure probably doesn't help. Ghostly in fact, and luminous green wee. Results on 8th January.
Had a long wait for surgery but everyone lovely and I enjoyed the anaesthetic.
I'm staying at a friend's until I'm up to going home.
Hoping everyone is coping OK.

I'm glad your friend is looking after you- take it easy!

I was most impressed with my wee !
Be gentle on yourself .and rest up. A GA is hard on the system !

Squiffy, I hope you start to feel a bit better soon. Friends have told me they usually have a few days between cycles where they start to feel better at least for a little bit x

rumred, how are you feeling today? It's a bit GA to go through, I hope you're friend is taking good care of you x