Cancer support thread 63 for a handhold or advice and anything in between

[purpleunicorns]

Continuation of the lovely Leslie's thread here as it was nearly full

If you're worried about symptoms, waiting for test results or just need a safe place to vent then pull up a seat, we're a friendly bunch and we don't bite too much

There's quite a variety of cancers on this thread so hopefully one of us will have some advice and hopefully you don't need to stay for long.

I'll start with my story:
Diagnosed with stage 2b cervical cancer in October 2017, 25 lots of radiotherapy, 4 internal radiotherapy and 5 lots of chemo. Was told last week that it's spread and is incurable, palliative chemo starts on 16th July

Not constant Leslie. They appear week 2 after chemo and last around a week. One or two big buggers on each side, where my tongue lies against my teeth at night. Very painful .

That's where mine are too. I guess chemo makes the skin sensitive and then it breaks when it rubs on the teeth. I'm using Milk Teeth toothpaste because my normal one stings. Bit annoyed it's white now, used to be a weird pinkish colour!

I've got Difflam and normal toothpaste. I favour alcohol too.. and bonjela. Tbh, I don't think anything makes much of a difference. It's just the body's way of coping with the chemo drugs.

Indeed. I've given up using anything. I can't get Bonjela to stay on. My tongue is too slimy! And Difflam doesn't seem to do anything.

noodles sorry to hear your news. Good luck with the CT scan - and the decorating.

Addled really glad the chemo went well this time.

Dulce sorry you're not feeling great. Hope you feel better soon.

TQ the rolls sound lovely. Do you have a recipe? or just post me some .

Life good here. Last chemo tablets done yesterday . Survived boat course with no loo issues (and passed!). Now enjoying a large + t .

Huge congrats pepper - what a relief. Bet that is tasting good

Congrats on finishing your chemo tayto - I’m only 5 weeks behind you and 3-4 begins dulce so I’m using you both to keep me going so I can join you lovely lacies!

Waves to everyone else too! Very sleepy but excited about new house so going to pop a zopiclone to make sure I can improve on 3h sleep from last night!

noddles I haven't read anything since your post appointment update yesterday but I just wanted to give you a hug. It sounds like we are on the same path, just a few weeks apart xxx

purple enjoy Whitby tomorrow. Sounds lovely, I have never been, but imagine they do good fish & chips there.

dulce I hope you are feeling better as the day has gone on

Tayto that g&t looks lovely (& v big!!) I think you have most definitely earned it

Leslie & TQ those mouth ulcers sound hellish. Not looking forward to all the side effects and doesn't sound like much can be done to sooth them.

addle can you drum up a gang of willing helpers as removal fairies and then give yourself the tea brewers job (very important)

pepper I agree that this wait is worse to find out if it has spread, it feels scarier as was convinced I had cancer before, but also convicted myself I would be fine. Did you find out on the day of the CT scan? I have an oncology appt to go through everything on Thurs, so imagine the CT results will be dealt with then.

I looked up the symptoms of secondary breast cancer on the Breast cancer care website & do not think I have any of the obvious ones. It is only one node which is enlarged (but does have cancer cells in) so hoping nothing more. I have definitely not had any unexpected weight loss (I would have said sadly before, but now I am quite pleased!) I felt nauseous immediately after reading that as a side effect, but then realised I am shattered and hungry, so have had some food and am in bed now. I think it helped though, although will probably symptom spot until they put me out of my miser You! I wonder if I get a bone scan cancellation too if the chemo is likely to start sooner. Does anyone have experience of this?

Apologies if I have missed anyone, my memory is only taking me so far & when I scroll to the prev page I always manage to lose my comments. I hope everyone has a good weekend and feel as comfortable as possible in the heat.

mrsp Thanks
Did you have cancer cells in your lymph node too? I am finding this wait worse, but hopefully it won't take too long. I am so grateful for the cancellation appt, It has made me feel slightly less panicked too weirdly.
Am I remembering right that you have had a mastectomy? (Sorry am on info overload at the mo & keep getting muddled) if so, did they do chemo first too?

Morning ladies

Been hit with bad diarrhoea since last night which is not helping my sore bum situation. Have put some baby cream so let's see what happens.

Tayto enjoy your freedom!! Must feel awesome. What next?

Adle you're not far behind me so let's carry on holding each other's hands eh? How are you feeling?

Noodles so much love your way. I've a friend who was told 10 years ago her bc had spread to bones and liver and as such it had no cure, and she's still around. Good luck with the scans

Tq and Leslie hope the ulcers bugger off soon. I haven't had the pleasure of those just yet.

9 days to go. Scan on 6/8 and then what?? Just carry on living?? Why do I find this idea so daunting? Am I mad?

If you could PM me that would be great TQ

Tayto I've just discovered gin. The violet one is my favourite

Noodles Whitby does the best fish and chips. That's why I'm going I've never had a bone scan but hopefully someone in here will have some experience of them. I think I would ring about a cancellation, the worst they can do is say no

Dulce I think you'll be given scans every few months for a while to to make sure nothings started growing g back

Dulce. I have no hospital appointments for a whole month! Meeting with my oncologist early August - she wants blood test first to look at CEA and blood count etc. She'll go into monitoring then - I think there is a scan schedule. Trying to stay positive and not look at stories where it has come back. Hope you dire rear better soon. I'm expecting mine to be bad for another week but really looking forward to it stopping.

Purple I have the 'botanist' one at the moment and another couple. Naturally requires extensive testing to see which I like best! Not seen the violet one - sounds good.

Oh no dulce what have you got for dire rear?? Just loperamide? Maybe you need some lomotil as well?? Poor you. I am actually just feeling tired! Capecitabine hasn’t hit me yet tho and I am just amazed at how well the nausea is being controlled by the new drug!

Too tired to remember what everyone is up to (sorry!) As am drifting off a bit - punctuated by yells as each fight between my 2 DSs breaks out - they are bugging me a bit so my mum has dutifully come up to keep them amused for a an hour or so so I can rest!

Thanks for that dulce I will keep that in mind and try not to fret too much. I hope the baby cream works.

purple I thought so! Enjoy. The best fish and chips I had were when we were camping in Ditchling. I think part of it was eating them outdoors as well though and the lashings of mushy peas...
I haven't seen violet gin, must look. My friends husband runs his own wine merchants in Preston. When I stayed last, he made us Hendricks gin with tonic and a slice of pink grapefruit in and blueberries. It was delicious

I told the kids first thing. I did it separately, so told the eldest 1st as she was up much earlier. I basically said I had found a lump and it was called breast cancer, I have to take some medicine that may make me poorly and I may lose my hair, but it will make the lump smaller so when I have an operation it is just a small one. Said I will be ok though and that my parents may visit more to look after them and they may have extra sleepovers at friends if I feel poorly or tired. I will be off work for a while and have a book called Mummy's lump if she wants to read it or I can go through it with her. Said she can ask me anything or speak to teachers etc. Not one question (yet) she just fixed on the fact I will be off work for a while, so she does not have to go to after school care as often!! (& was delighted with that!)
When I told the 4yo, she wanted to feel the lump, giggled when I said I may be bald soon and then told me sharks took her 1st parents so mermaids brought her to me instead. She was making a stained glass mermaid picture, but she is in her own world much of the time!
It was actually completely fine, I was fine too, it was much better than I thought as had visions of much wailing & tears.

I got the date for my bone scan today too, it is Mon (9th)
I get an injection and will then be scanned approx 3 hours later.
After that they will need to put a marker into the tumour, this is apparently if it shrinks so much from chemo that they cannot see it when operating. It is a wire I think that is put in using ultrasound to place it. Then I should be starting chemo hopefully...

Waves, hello & a good weekend to everyone too

Thank you for the good wishes. I feel slightly more human today and managed to go to dd school fair which was nice.

Have a question for the colon cancer club ladies: have any of you tested positive for any genetic conditions? I was told I have Lynch and will need a full genetic map to see if I'm likely to give it to dd. The reason I'm asking is that I've done a bit of reading (having never heard of this before) and it sounds like I would have a lower reccurance rate but a higher risk of developing ovarian and womb cancer. So now I'm totally overthinking this and considering if a hysterectomy would minimise my risks. Any thoughts?

Sorry for the constant lack of name checking. My mind is very fuzzy at the moment!

Noodles glad telling the kids went well. Sounds like you explained it really well. We let school and daycare know too in case kids were upset Mine have been very matter of fact about it all but do have a habit of telling everyone about my treatment .

Dulce I didn't test positive for any of the known genetic conditions. No family history or lifestyle factors so mine is a bit of a mystery. What is the additional risk for womb cancer? I guess if high a hysterectomy might be a precaution worth thinking about but need to be weighed up against risks of early menopause?

Tayto I'm almost 45 so I reckon menopause is not far away anyway. It just says it has an increased risk, not sure why. I should probably ask the consultant what he thinks. Do you have any idea what caused yours then?

Noodle pleased it went well and easier than expected. Kids are very matter of fact aren't they. Mine asked me if I got it in my tummy because I didn't wash my hands!

Dulce yes discussing with your consultant sounds best bet. Must be worrying to know about the risks for other stuff. Hopefully they can reassure and provide extra monitoring or preventative stuff. No idea what caused mine but there has been a massive increase in cases of bowel cancer in young people so there might be another lifestyle factor maybe? I don't match any of the known ones - healthy BMI, was veggie for 15 years and don't eat much meat now, moderate alcohol, do a lot of exercise - bloody annoying. I think a lot of bowel cancer is still unexplained. My immediate family will need extra testing as I got it at 39.

I’m still waiting for my genetics appointment but the sample of tumour suggests no Lynch syndrome and I didn’t have any other polyps or anything. You will have to speak to the consultant about any associated risks - To a degree it is probably an individual plan you will need, and frequent monitoring, but primarily you need a genetics appointment if you haven’t already I reckon...

Hi Noodles. Glad it went well with your children. My DD is 10 and I've told her everything about my bc and treatment too. She seems to have taken it in her stride. She has become a lot more cuddly and doesn't whinge 'quite' as much when I ask her to help with jobs around the house .

Might get her that book too. I told school just in case as well.

Good morning

Dulce I have FAP. It has an increased risk of duodenal cancer, and various other things, so I have an endoscopy every so often to check for duodenal polyps. I know a few people with Lynch syndrome, but none of them have had hysterectomies, just ongoing monitoring. Also for follow up after finishing treatment, I had yearly CT scans and blood tests, which I think is standard.

noodles I'm glad it went well with your children :) young ones are generally much more matter of fact about this sort of thing.

purple I hope you enjoyed your fish and chips

Tayto well done on finishing chemo!

Waving to everyone else. Have a lovely Sunday.

Will post properly later but what is FAP Leslie?

Sorry Dulce, it's familial adenomatous polyposis. It's a bit like Lynch, but a different gene so it affects different organs. It causes hundreds of polyps so there's basically 100% chance of cancer unless the colon is removed.

Happy Sunday lacies xxx
Noodles my path, while similar, is a bit different as I did have a mastectomy and haven't even got an oncologists appointment yet! The letter should be here next week but no clue when the appointment will be! So I've been all surgical so far with a ct scan which showed an unusual nodule and a PET scan to look at it. But my lovely surgeon doesn't want to see me for 6 months now!!!
Glad it went well with your DCs. How old is your oldest? Mine are 9 & 12 and as they are both girls I'll be having the genetic test as soon as it's offered to me.
Oh, have you / they said if you are oestrogen/ progesterone/ HER2 positive or negative?

I hope everyone is comfortable in this heat, I am absolutely rubbish with names but I am thinking of everyone xxx