CANCER SUPPORT THREAD 60! Here we are again... join us if you have any sort of cancer (or if you're waiting for cancer test results)

[WhatWouldLeslieKnopeDo]

Welcome everyone to a shiny new thread :)

It's a club nobody wants to join, but if you need us, you are more than welcome. If you're waiting to find out if you have cancer or not then pull up a chair. We hope you won't need to be here long, but we are here as long as you need us. And if you do have cancer then this is the place for you. Swear, rant, scream, laugh, cry... someone will have at least an inkling of what you're going through!

We only have one rule, which is do not Google. Though perhaps we should update that to please Google responsibly as few can resist completely!

I hope this thread will be a source of support for all who need it

Our previous thread can be found here

Phew for your scan results and MIL not needing chemo Fresta and congratulations(?) on your symmetrical breasts!

Hello shiny new thread!

Brief recap from me:
10ish seizures in May 2016 (aged 31 and 13w pregnant) lead to hospital admission via A&E. MRI indicated a low grade glioma in my brain. Started anti-seizure meds. Had to await the safe arrival of the baby, who was born in Nov last year.
After many (many, many) delays, I eventually got my tumour removed in August 17. Biopsy results showed it to actually be grade 3 so I was referred to oncology and am currently 2 weeks into a 6.5w radiotherapy regime, to be followed by 12 or 13 cycles of oral chemo.

I did just post on the old thread, but for those of you talking about telling schools: from a secondary school teacher's perspective - I'd always say tell the school (preferably a head of year or someone) so that your child can be supported/had someone looking out for them. You can request that it isn't passed on to general teaching staff/support staff, but means that if anyone raises a concern about a change in your child's behaviour, they won't be calling your child in and asking questions that may upset them/phoning home to raise it with you, which I imagine wouldn't always be helpful.

Feeling knackered tonight, though no idea if it's the non-sleeping toddler & baby to blame, or the radio starting to affect me! Either way, I suppose I should try and get some sleep!

Thanks for that Greycat, it will be the first thing I do once I’ve told my son. No idea how you’re managing to cope with a toddler and a baby, I remember the sleepless nights far too well and that was 15 years ago! Hope you have plenty of support

Morning everyone
I love a new thread because due to ancient iPad, I can’t post on the longer threads so have to lurk (or PM people) a lot.

I was diagnosed with breast cancer in Oct 2013, had 6 months chemo a bilateral mastectomy, no reconstruction and rads. Ive been taking tamoxifen for 3 1/2 years. I also had a hysterectomy March 2017 as I kept getting uterine polyps.

If I can answer any questions, please ask, when I was thinking about surgery, it was hard to find info about not reconstructing, so happy to answer any queries.

Want to add my thanks to Leslie for keeping us all in order. Sending special thoughts to Chewing and although I can’t post to most of the time, I am thinking of everyone in treatment and enduring the awful wait between diagnosis and a treatment plan.

thanks for the new thread Lesile

i am 2 yrs on from stage 2 lobular breast cancer/mastectomy , now on letrozole and diep reconstruction this year

kidney panic last year where -complex cyst with a 90% chance of being cancerous but i was in the 10% just peculiar kidney group thankfully ....it was an awful round of scans/operation waiting game to find out tho!

to all here

Bum.

Just did a really long post and lost it...

So long story short..

Stage 4 bowel cancer diagnosed last year, big shock as no symtoms.

Palliative chemo, liver inoperable due to location of tumours.

Chemo and targeted therapy working well to shrink tumours.

Hoping for six month break , have had three weeks off chemo so far waiting for scan and results, although if I have big break NHS won't fund or restart the targeted therapy, which is a bugger.

Had routine scan last week that showed a big Pulmonary embolism bit too close to my heart so had three crappy nights in hospital to be kept an eye on.

Out now, managed a trip to Harry Potter studio tours on Tuesday but felt too crappy on Wednesday to go to theatre with children so sent My MUm with them.

Feeling better now. Have talk with oncologist Nov 9th to discuss what's going on next.

If six months chemo break would appreciate info about your holiday Nicky :)

Recommend telling school for people with children, initially we just told the head and class teachers and asked for no others to be told but gave it a few weeks and then rest of staff informed.

Sorry to people who have had to join this thread recently. Hopefully once diagnosis and treatment plan in place it's that bit easier to deal with.

Leslie and anyone else I 'm on facebook, pm details for friend requests x

Helloooo nice new thread (thanks leslie).
Diagnosed breast cancer january 2016 and it was cheeky enough to have nipped of to a lymph node. Lumpectomy, chemo and radiotherapy now on zometa infusions every six months and anastrozole.
Sorry to see new faces so sending a hug to anyone who needs one.
Had 1st oncology appointment since the end of active treatment last October (time seems to have flown!) and all seems well on the boobage front . Discussed how I was getting on with the anastrozole and after a withering look on my part oncologist suggested coming off it for a month, restarting and it the pain continued to try exemestane instead. So another thing for me to over think about. I had my hair blow dried for the first time in 18 months and i looked 15 yrs older and the double of my mum it was hideous even hubby looked horrified so back to the curls for the time being. Hugs and love to all xxx

nicky meant to say i have b/g twins nearly the samd age as yours xxx

Hello new thread. Thanks Leslie
I am relatively new here.
Long story short - after a period of intermittent low grade chest pain/wheezing, 2 X-rays and a CT scan later I was told I have a cavitating lesion on my lung. Possible causes an atypical infection such as TB or malignant cancer. PET CT scan inconclusive but discovered a lump on a muscle in my pelvis. Possible causes a lipoma or a sarcoma.They cannot biopsy my lung without a lobectomy.

On Monday I am having a bronchoscopy to try gather cells from my lung. On Friday I am having an MRI to diagnose the pelvis problem.

I am still in limbo waiting for a diagnosis for the lung and pelvis.

Waiting for tests and results is shit.

Hugs to everyone

Thank you Leslie for the new thread.

I'm relatively new to this. Diagnosed with Stage 3/4 lung cancer with mets to lymph nodes in medistinum. Virtually no symptoms. Initial thoughts were menopause - night sweats, rapid weight loss and general malaise. Belt and braces CT showed enlarged liver, spleen and nodes in chest. Mediastinoscopy showed cancer. Further PET CT confirmed dx.

Apparently I'm very young (!!) and fit and healthy, so they're confident that I'll manage chemoradiotherapy. First cycle (out of 4-5) of chemo to start on 06/11. Radiotherapy will begin on 27/11 for 6.5 weeks.

Mostly ok, with the occasional wobble.

I hate that so many find themselves here, but I LOVE how comforted I feel by everyone's kind words and amazing advice.

I hope all are feeling not too shabby after an extra hour in bed. As is standard, I woke at 4:30 this morning, but was in bed super early last night, so I'll take it.

LittleGreyCat I hope you've managed a restful weekend - radiotherapy and non-sleeping babies is definitely not a fun combination! :)

fluffy bugger about the PE. I've got them too. Sticky chemo blood and even bigger bugger about treatment break affecting funding. That rather complicates things! I hope you have a helpful chat with your oncologist :)

It seems like everyone wants to go on your holiday nicky maybe we need to get ourselves a private jet!

helly sorry to hear about the disastrous blow dry and good that they're taking the anastrazole side effects seriously

wombat good luck for tomorrow. Is it a day case or will you be in overnight?

Biscetti sorry you're waking so early! It's a tough one isn't it. I wish the thread weren't needed at all, but as it is, at least it's somewhere that hopefully people can feel comforted :)

I had fun at a wedding reception last night, even managed some dancing! A bit worn out today, with adhesion/period pains/something. It's all a bit of a mess in there now so all pains feel the same really

Sending love to all who need it, and lovely to hear from some of the oldies :)

Can I rejoin this thread? I used to be a regular with a different user name when I had cancer myself ( this would be 2012/13 and a little in). So far as I know I am cured but 10 days ago my 18 year old daughter was diagnosed with the same not that common cancer ( which isn't hereditary and that appears to have a weak familial link only). To make matters worse she has been severely unwell with another illness since mis 2013 herself to the extent that she is completely bed bound, in constant pain and just really really ill. She goes into a teenage cancer unit this week to start treatment and I am beside myself with trying to work out how to support her as her existing illness will make its well nigh impossible for her to cope. I will be able to stay with her thank goodness as I care for her 24/7 and there is no way she could cope with attempting to communicate her needs in a stressful situation to a nurse or careworker. She spent almost 5 months in hospital 2 years ago which was hell, I lived there too. This time she will be far from home so my DH will be in a hostel onsite as well as least for week one. I just need to rant

Oh Carbuckety that is awful for you all, so sorry, feel free to rant and swear.

Leslie, we may be able to get the cetuximab with DHs private health cover, will have to see.
I have been investigating family holidays in February in SPain/Portugal sort of area so hopefully can get the break and decently priced travel insurance..

Wombat good luck with test results and Biscetti with chemo and radio xx

Please rant away carbuckety, I don’t have any advice but I’m happy to listen and to lend an ear/shoulder x

Hi carbuckety I joined around that time too. Many name changes ago! So we probably met then. Your poor DD, what an awful shock

fluffy fingers crossed for getting the cetuximab privately :)

carbuckety so sorry to hear that, especially when you've all clearly been through so much already. I hope the teenage centre offers you lots of support.
helly - high 5 to the twin mum mafia. I hope yours are doing well
fluffy - pm me if you want any info on Norway. I hope you get your break ... and the funding for the targeted drugs
Well done leslie on getting your groove on at the wedding! Hope you're not paying too hard for it today.
Good luck to everyone awaiting results and treatments. CT for me tomorrow, to see what this weekly Taxol business is achieving. Good things, hopefully .. x

Thank you Fluffy I’m at the ‘just get it started’ stage now. All 4 children have now been told, which is a HUGE weight off me. I don’t think we realise just how amazing our DC can be with this stuff. 8 yo asked lots of questions last night, we had a little cry, but being totally open is definitely best, so thank you hugely for all the advice that you and others have given. It really helped. Also, fingers crossed for a lovely break.

Carbuckety I’m so sorry. I echo what Nicky has said, and hope the teenage centre offers all or as much support that you all need.

I’m awake early again... but was sparked out by 9 so I’ve had a pretty decent sleep. DD back to school today, so I’ll grab a nap late morning. I’ve managed to do my teaching prep for this week over half term, so I just need to turn up and teach, which makes life much easier. I’m going to try and keep on top of it as much as I can, so I am able to carry on as long as possible. I have a really good bit of freelance (of my other work) coming up and just don’t want to not do it, so I’m really hoping I can hold up until the end of November. I’m naturally positive, so will continue to tap into that!

Hope all have a good day, and that all tests, treatments, scans etc go smoothly.

I also just want to say thank you much to all of you. Just reading this and the other thread through gives me such hope and determination, and I’m so glad you’re all here. 💐❤️

A slight name change here, as I didn’t feel quite right in the other guise. But still all about the blood, though no self-respecting vampire would want me now.

I’m another one with a CT scan today. My first (only) symptom that took me to the GP was changed bowel habits which lasted over 3 weeks. The bloods they sent revealed the stratospheric WHC count an. I went straight in to treatment. So colonoscopy ruled out (bowel prep too risky for malabsorption of oral chemo). Ditto for targeted bowel CT. So it’s to be a general everything from the neck down scan to see if everything looks ok.

I shouldn't feel nervous, as there’s no reason to think there’s any other cancer or nasty (no symptoms, remember, and bowel issues can be explained as infection only clearly slowly because of the WBC problem).

But I’ve woken up early and feeling on edge.

But on the brighter side, no side effects so far from the new targeted drug!

iVampire good name change. Good luck for today’s CT. I totallly get the on edge feeling. It’s the not knowing that gets me, and allows my imagination to do its worst. I will be thinking of you. When will your next appointment be for results of the scan? Not too long I hope. X

Good luck for your scans nicky and iVampire

Biscetti I'm glad you've managed to tell all your children :)

Thinking of wombat today too

Just had a phone call asking me to go for an MRI and CT scan on Wednesday Has anyone else had them? How long do they take and how long until the results come back from them?

Haven't had an MRI but CT scans are about 5 minutes after you've had the cannula put in.

Results take ages - in my case up to 2 weeks. It depends when the MDT is meeting and when your subsequent consultant appt is.

Had a good phone call from hospital regarding her needs for her underlying illness which has reassured me hugely. Just hope they deliver what they promise! The waiting is always the worst isn't it? 10 days feels like 10 weeks and all the sitting around waiting for Consultants to appear. I just want to know which regime she will be on so I know how many days she will need to be inpatient at a time ( the difference is 2 or 12 I think). Oh well