Cancer Support Thread #71 - here to help if you’re dealing with cancer in any shape or form, come in and say hello.

[Brassica]

Hi again everyone and welcome to the 71st new thread for cancer support.

All those who are currently being treated, have been treated in the past, have worries and concerns and/or are having tests are very welcome to pull up a chair and chat, vent, rant, pour hearts out, share milestones and anything else! We are a very friendly and all-too experienced bunch on here and there are no questions too small or silly to ask.

Our previous thread is here .

Anyone with any type of cancer (female or male) is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

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

Please can I invite current members to reintroduce yourselves below for latest situations and stories so far.

Minnie The short answer is Yes. They did a trial to see if they should roll it out as a national screening service, like mammograms and cervical smears, and decided that it was too unreliable. As you say, 'could be lots of other things', including endometriosis, inflammation, infection and so on. I think they decided that 3 tests at monthly intervals, showing a consistent rising score over the norm of 30 merited an ultrasound on women without symptoms. Otherwise, it's mainly used after diagnosis to show whether chemo is working or the cancer is recurring.

Have you had your result? Do you have symptoms, or are you being tested because of your previous bc?

Mine was 130, with a v large Borderline Ovarian Tumour - non-malignant - just because it was rubbing against other organs. I know someone with a score of 600 through endo. Funnily enough, I had one. yesterday as part of my 5 yr monitoring. Fingers crossed my infected molar won't raise my levels. I'm hoping to be signed off for good.

Thank you Tymeout. That's reassuring.
I had an internal scan as I've had worsening pain near my left ovary for 6 months. I've also been a bit bloated and feeling full easily but that could be due to getting older.

I've got a small cyst on my right ovary and fluid in my pouch of Douglas. It was the latter which caused the GP to order the test.
I'll get my results by Tuesday.

'Free fluid' is another 'not necessarily sinister' symptom. I had that, too, again because of irritation. It sounds as if your gp is doing all the right things and following protocol. So many women get fobbed off with vague diagnoses of IBS or gastric problems.

Best wishes for Tuesday.

And fantastic news that the anti-b's have done their stuff for TQ. It must have been so scary for her and dds.

Happy birthday Wtf; hope you're feeling better

Hope you're still feeling ok after your radiotherapy meercat23
*
MinnieMountain* sorry to hear about your nasty test. Fingers crossed it's all just non-cancerous nonsense.

It's good to know there's a protocol. I can relax now

Minnie hope the results on Tuesday are reassuring. Meercat, glad you are through one radiotherapy, hope that will make the rest less scary. Greetings and thumbs up to all of you.

Minnie Hoping for the best possible results

The Radiotherapy was fine. Just took 15 minutes and they say that now they have the settings fixed the rest of the sessions should be a bit quicker. 1 down and 17 to go!

Happy Birthday WTF

It's great to see you posting again TW
*
Meercat* Hope the radiotherapy continues to go ok

And big hugs for anyone starting/continuing Chemo

Bloody Chemo brain, sorry TQ!!!!!

Good to hear from you TQ! You've been missed.
Happy birthday wtf
Sending lots of love to everyone else XXX

I've been lurking but not posting, apologies! I haven't had much wisdom to offer! (Or much wisdom in general )
Yesterday I had a meeting with my haematology team to confirm that I'm in remission from Hodgkin's! My doctor did call me last week as soon as he found out - while I was at the school gates and everyone was staring at me sobbing down the phone argh! - but he had to get everything backed up and agreed at the MDT before he confirmed it yesterday. Good thing too cos I'd already told everyone

I never thought I'd get to this point, it's a huge relief. I realise I'm v lucky. I have to go for checks every 7 weeks to make sure it doesn't come back. The norm is to get radiotherapy too, but as my cancer was all around my heart and lungs, they think it's too dangerous. I'm already paranoid that every pain, itch or cough means it's coming back! I've also got to get some more investigations/treatments for the chemo side effects, damaged lungs, blood clots, early menopause, bone pain. But they are little things compared to chemo/cancer.

I'll stick around just incase anyone else with blood cancer comes along, maybe I can help or offer advice. I'm also good with what to pack in a hospital bag, what's good for sore mouth and what the best antisickness pills are (emend!). Honestly, if it wasn't for the lacies, I would have been lost, especially in those early days when I didn't know what to expect and I was struggling to accept everything that was happening to me.

Tahiti Brilliant news. So pleased for you

Hi Notcool 1984 I hope everything the ultrasound clear. I am going through treatment for papillary thyroid cancer at the moment. I find it quite lonely as it is so uncommon.
My timings haven’t been great either. I also have 2 children. I had my thyroid removed in the Easter holidays and am having RAI therapy during the summer holidays.
Fingers crossed everything will be ok.

That is wonderful Tahiti, congratulations on the good news. You sound really upbeat and we need lots of that kind of thing so please do stick around to remind old and new alike that things can turn out ok.

Hope you had a fab day yesterday WTF, did your DD feel well enough to meet up in the end?

Apologies Born for calling you WTF in an earlier post, I think your birthdays close together threw me (it doesn’t take much!)

Hi Double and welcome. Do I detect that you are a twin mum from your name? Me too. Do you have help with the children to get you through the holidays? Hopefully the RAI will be quickly dealt with and you’ll be out the other side without too much problem. I don’t know anything much about thyroid cancer but I guess you could have more than usual difficulty with eating and drinking from the treatment. How have you been since surgery?

Beautiful day here today. I’m taking it easy in the garden and might make a lemon drizzle cake later as my two go more than a little nuts for it! Hope everyone is ok and that TQ is still on the up.

Minnie - yes there's a tick-box list for referral to a Gynae. Unfortunately, it's not as straightforward as for bc, where just a lump gets you speedy investigation and it's all sorted at a one-stop clinic the same day.

I went to my GP, with a distended abdomen, and a tumour she could feel, late June and didn't get a definitive diagnosis from the path lab till September after surgery, but my surgeon was optimistic and said it looked benign. Every scan, even a biopsy of free fluid, was 'inconclusive'. (But TQ was diagnosed practically in A&E.)

You're joking about being able to relax?? The waiting is horrible. Just warning you that finding out the cause of your pain could be a long haul. Especially as your cyst is on the opposite side from the pain so it might be irrelevant. Are you pre-menopausal? They're v common in younger women.

Anyway, I found 'one day at a time and let's not get ahead of ourselves' the best policy for me. Hope you've got some nice distractions lined up for the weekend.

Hey all!
Yes I had a lovely birthday in the end. Dd was still snotty so didn't see her but she's coming over for the day on Monday so all all good and it's nice to have treats in the diary for side effect free days.

It meant I had DS to myself for the afternoon. We went for a drive out in his ancient mx5 with the top down (no wind in my hair this time obvs but never mind) and had lunch at a pub by the river. Its still slightly odd to me that my kids are grown up enough to do this kind of thing and look after me a bit, but they are and it's great! Then my fella came over in the evening which was lovely and I had a glass of champagne.

I confess that I spent the morning in bed with coffee and toast binge watching Love Island....but I'm reeeally ill and that's my only excuse

Nice to see some good news here today. I'm just plodding through post chemo days and making the best of it. I'm pleased to say that my emotional state seems to have settled from the sobbing mess that I was for quite a lot of last week. I do wonder if that was partly drug created? Come down from the steroids maybe? I dunno but I'm happy to feel better.

Wishing everyone a good day and hand holding for those waiting or in limbo which is a crap place to be.

Having a wobble. Haven’t posted much recently because my immunotherapy was stopped because of raised liver enzymes. Had my steroids increased 2 weeks ago to try to sort them out - dropped nicely last week but had another blood test yesterday and they’re back up to where they were. No idea what’s going on.

And my 11 year old DS is in surgery at the moment for a scheduled op - he’s been in 3 hours now. I need to get my head together to look after him when he comes out but I’m feeling a bit of a mess! DH is being great but sometimes it all just feels too much

Probably Thymeout. I've got to try though. I was a mess waiting for my lumpectomy date last year.

I'm pre menopausal. Possibly peri menopausal as my periods have started to get erratic.

What finally gave you your diagnosis?

I didn't know for sure till the 2 week follow-up after surgery. But the first words my lovely surgeon at St Thomas' said to me were 'Well, I think it's benign'. My local hospital doesn't have a gynaeoncologist. I'd actually had a CSN on the phone telling me it wouldn't be surgery, just chemo - tho' there could be surgery in the future. It wasn't her fault. She was reporting on the MDT which looked at my CT and MRI scans and telling me I was being transferred to St Thomas'. I thought I was turning up at his clinic to be given a chemo plan. Never has anyone been so pleased to be told they were having major abdominal surgery. My hands were shaking so much I couldn't sign the consent form.

Pre-menopausal is good. The menopause was a distant memory for me and, on another tick-box index, I scored high because of my age.

It may not even be your ovaries. If it is, 95% of ovarian cysts are benign, and, weirdly, ov ca doesn't usually present with pain.

My dd has just had a u/s and Ca125 for middle of the month pain and heavy periods. Both fine. She thinks she may be peri-menopausal too. Understandably, she's a bit twitchy having spent too much time on Google during my drama. Poor thing. She'd actually rejected the idea of a Borderline because it said 'excellent prognosis'. In her mind, it was bound to be the worst of the worst.

Anyway - it's all just routine so far. Good that they're checking all possibilities. I think there's been an awareness drive among GPs. It's more unusual than bc and not the first thing they think of.

Hi Toofar, sorry to hear about the ongoing uncertainty for you. It must be very difficult waiting for different things to change before anyone can tell you what’s coming next. Is the plan that you’ll continue on the steroids for a bit longer? I hope someone at the hospital can give you some guidance on what to expect.

Also hope your DS’s op went ok. Sounds like a worrying time all round! Take care of yourself as well.

Bit of a dip today.. Back on iv antibiotics.. On the plus side, I had a trip to cheat xray

Hi Brassica
Thank you for your kind words and yes I have 12 year old twins.
Thyroid cancer isn’t common, although I have been told if you are going to get cancer thyroid is the one to get! It’s is slow growing and the survival rate for 10 years is above 90%. If rather not have cancer.
I had my thyroid and 31 lymph nodes removed from my neck in April, typically first week of the Easter holidays. My next stage of treatment is radioactive iodine therapy. For this I have to swallow radioactive iodine and go into isolation in hospital. I stay probably for 2 nights until my radioactivity is at a safe level for me to leave. When Im home I have horrible restrictions for a week. Husband and DC will move out as I can’t be in close proximity with anybody for a week. This will happen in August.
I’m feeling slightly nervous about isolation and being away from husband and DC

@Doublethecuddles that is the same type of thyroid cancer I had too. I had a right side neck dissection with around 80 lymph nodes removed, radioactive iodine and take levothyroxine daily. Happy to offer any support or advice if you want to DM me. I also found / find it can be lovely as such a rare form of cancer. If it is any reassurance though I found the rai treatment was totally fine, although obv missed my kids (mine were 1 and 4 at the time) x

Lonely not lovely!!!

Thanks all for welcoming me. My neck scan is in two weeks after my consultant felt the lump and did the concerned face I hate when they do. I will know more then. Just trying not to let is ruin the summer holidays (Scottish) x