We're not that old but we're losing our hair... Do you still need us, now we're sixty four?! - CANCER SUPPORT THREAD 64

[WhatWouldLeslieKnopeDo]

Me again. Even attempted a vaguely witty title. Hopefully not in poor taste

If you have cancer, or you're waiting for test results to see if you do, then please pull up a chair and introduce yourself!

Some of us have been here for ages and others are just going through the testing process now, so there's bound to be someone who understands what you are going through.

Whether you are a newbie or an oldie it can be helpful to post a quick recap of your diagnosis/treatment to date just so that other posters can keep track without having to search previous threads :)

If you have a relative who have cancer then there is a thread just for you in the Life limiting illness topic, with lots of others who are sadly in a similar boat and able to support each other. Other threads in that topic might also be of interest. We wish you and your loved one all the best

Below are some links that might be useful. But feel free to ask any questions at all. Nothing is off limits here.

Cancer patients are eligible for a medical exemption card for prescription charges - there is some information on the NHS Business Authority website or you should be able to get the form from your pharmacy or GP surgery

You can find information about the individual chemo drugs or regimes on the Macmillan website here

See if there is a Look Good, Feel Better workshop near you - they are especially useful for advice on disguising missing eyebrows and eyelashes

Ellie's Friends
Something to look forward to
Cancer Research UK
CRUK science blog - this is interesting and very useful for getting the facts behind any big cancer headlines
Breast cancer care
Shine cancer support (for people in their 20s, 30s or 40s with cancer)
NHS What do cancer stages and grades mean?
Macmillan staging and grading (this is in the breast cancer section but applicable to many other cancers too)
CRUK stages of cancer
CRUK cancer grading
Don't forget the kids

I have dots around my pelvis. Never thought I’d get used to them but I forget they’re there now. Didn’t hurt at all and I feel so badass having tattoos. I also have internal ones but that’s harder to explain to people

My tattoos will show above a bikini. I'd never thought about them being badass

Best of luck with the half marathon iVampire.

I saw Chicago in London yesterday. It was amazing.

Thanks everyone for lovely birthday wishes!! I had an fab time! Just about to have brekkie cooked for my by amazing friends! Think I may be still a bit drunk as was doing flaming sambucas well after midnight (only a couple!!) and bed wasn't til 5am

How you feeling dulce?! Bit ropey like me or still sleeping like a sensible person?

Happy birthday for next weekend purple!

Yes - whoever asked (sorry I have very poor short term memory!!) peripheral neuropathy is pins and needles or loss of sensation in toes and fingers due to the chemo... for me it is mild and not painful, but for some it can be painful and really distressing

Hope everyone has a lovely day and better weather than where we are - it is foul here!

Sounds like a great birthday night (& breakfast) addled Enjoy!

It is miserable here too, I have not moved far from my bed yet today. I don't seem to have the side effects from chemo yet that I had the last time round. Am wondering if it was because I had EC in my system before still as had only had my last infusion of that 2 weeks prior. I just feel a bit peculiar & no flaming sambucas to blame it on sadly!

I totally get where you are coming from with EBay addled I mainly talk about organising stuff to sell than actually do anything & then it is only stuff in good nick. I did sell of a load of (really good) kids summer clothes around Easter time and made about £400 which is a decent incentive to then try selling more stuff.

I hope everyone has a good day & the weather doesn't put too much of a dampener on proceedings...

Good morning

I'm glad you had fun addle. Enjoy your breakfast!

noodles hopefully you won't be hit as hard this time round

iVampire you need a registered podiatrist/chiropodist rather than a pedicure. I just Googled podiatrists in my town and chose one :)

Waving to everyone else

Happy birthday addle sounds like you've had a lovely time.

Yes I have only just crawled out of bed and am definitely feeling worse for wear but in a weird way it's good cause it's normal. It's the first time I've done it since the cancer. All I need is my head to be less fuzzy.

Weather is shite down here and I would love a pyjama day but shopping needs to be done. I'm wondering if it's acceptable to send dh after he's had dd last night and this morning

But you've had cancer Dulce play that cancer card for all it's worth! I hope you get a pyjama day.

Dulce - Could you do an online shop then you can peruse the ‘aisles’ from the comfort of your sofa? Or be really decadent and go back to bed to do the shopping.

Addled - Bed at 5am!! Good for you! I am in awe! Sounds like you’re having a lovely birthday weekend

Purple - Do you have plans for your birthday next weekend?

How are you today Leslie? Did you do much of your knitting? It’s good hunkering down with a craft or a book weather this weekend isn’t it.

Noodles - Pleased to read you feel better this time round than last. Long may it continue!

iVamp - Do you run every day to prepare for the half marathon?

Did not know that you had to be tattooed for radiotherapy!

Horrid weather here but supposed to be better tomorrow with some sunny spells. Meeting a friend for coffee. I haven’t seen her since before my op in May. During that time her DH was diagnosed with Hodgkin’s lymphoma. Cancer is an utter utter bastard!

I'm much better today thanks Aimlessly :) I couldn't sleep in the night so I read a book I'd bought about breathing exercises for asthma and tried them again. They are helping already! I am going to practise them every day and hopefully it'll get my symptoms back under control.

I am making good progress with my knitting. Definitely hunkering down weather today!

It will be lovely to see your friend, but a bugger about her husband's diagnosis.

Hello everyone
I’m new, sorry haven’t read all the thread so bear with me . If you guys don’t mind I have a few question you might be able to help me with !

I have just had a lumpectomy for stage 2 invasive Ductal cancer on Thursday . Recovering well but seeing the consultant on Wednesday to find out what next.
The initial ultrasound showed no spread to the lymph nodes but they took 3-4 sentinel nodes to test at the same time as the lump removal.
How likely do you think that they find evidence of cancer having spread when it doesn’t show up on the ultra sound and if so does the treatment definitely involve chemotherapy. At the moment the treatment is radiotherapy only.
I’m still feeling quite nauseous at times do you think that’s still the anaesthetic wearing off ? I’ve had to come off the HRT cold turkey as from time i went to the one stop breast clinic to op was so fast - 16 days . As a result I’ve been having lots of nasty hot flushes and feeling nauseous too.
Your thoughts/opinions would be much appreciated.

Hello Ineedabiscuit
I have no idea of the actual chances of it not being in your lymph nodes. In my case my lymph nodes looked fine when scanned and turned out to be when biopsied.

I'm sure others will correct me if I'm wrong, but I think chemotherapy or more surgery can still happen if they're not certain they have removed all of the original lump.

It took a surprising amount of time to recover from the general anaesthetic. I was still spacey at your stage. Hadn't been on HRT though.

I'm 5 weeks post-lumpectomy for stage 1 breast cancer, due to start radiotherapy next month.

Hi there ineedabiscuit I had stage 2 invasive ductal carcinoma...
It was stage 2 grade 2... and only stage 2 because of size (2.5cm). Lymphnodes looked clear on scan and were clear on biopsy.
If it's in your lymphnodes then I think.chemo is pretty much inevitable (but I'm no doctor!!)... with mine because I was deemed young (I'm not...I'm 45!!) They were still contemplating chemo. But they sent lump off for oncotype dx test...which gives you a recurrence score...if it's low (thankfully mine was) then it's deemed that chemo isn't necessary.
I'm a weirdo that doesn't respond negatively to anaesthetic... in fact get a strange euphoria...so um can't help with that...and wasn't on hrt. Post radiotherapy (knackering but fine) I'm on tamoxifen...which is pretty much ok too...but I wasn't post menopausal...and think if you are you get letrazole or something...I'm not sure.
Tho that's dependant on the hormone status of your cancer...are you er/pr positive? Herceptin negative?
And um I liked reading happy stories at your stage... so I'm now 15 months out of treatment and life has pretty much returned to normal...hope that doesn't sound smug...and obviously it's not completely the same...but not far off. And that's the reality for many early stage breast cancer patients.
Take care of yourself...
And a big hello to everyone else....
Xxxx

Thank you Freddie and Minnie it certainly is good to hear your positive experiences and stories.
Obviously I am hoping it hasn’t spread but not asumming anything and hopefully I will know more at my next appointment. I just wondered the likehood of the ultrasound not being conclusive of a negative result .
My returning unpleasant menopause symptoms is a rude
awakening after 12 years on kliovance (hrt )
Is there a particular reason why the long gap Minnie from surgery to radiotherapy treatment , as I thought they prefer to start as soon as possible after the op ?

Good evening everyone

Good luck to TQ and Minnie with your appointments tomorrow

Welcome ineedabiscuit but sorry you need to be here I hope that your menopause symptoms calm down soon. How frustrating!

Waving to freddie :)

I've only been doing these breathing exercises for one day but they're already helping so if anyone has asthma or breathing issues I really recommend looking up Buteyko breathing. I have no idea of the science is sound or not, but honestly if it works, I don't really care

Hello ineedabiscuit I had very similar but lobular not ductal breast cancer. My nodes were clear when scanned so they only actually removed one during the lumpectomy. It turned out to have spread which was the hugest shock if I'm honest. I had assumed it would be fine, so was utterly stunned.
There are further scans after that to see if it has set up camp anywhere else, which thankfully it hadn't, so I had some choices, I was 47 so not post menopausal, I did have chemo, and I chose to have radiotherapy to the axilla instead of a full node clearance as the outcomes are the same.
Really I'd take one step at a time and take the advice at each stage.
I'm on letrozole, and every single time they've changed my meds the hot flushes start again! It's shit really but totally normal....
Do you know your ER and PR scores? The strongly positive one's mean that it's hormone receptive, mine were both 7 (out of 8) so tamoxifen/ letrozole were options. I'm HER negative so herceptin would be of no benefit.
I hope that helps

Hi Pepparrabit
Yes I suppose in this game nothing is definite , I understand what a shock it must have been . I suppose until they’ve fully investigated the lump and nodes under a microscope anything is possible, there are so many variables.
I don’t know my scores but do know it is positive for both oestrogen and progesterone and they retested for her2 and it came back negative, -so the same as you .
How long has it been since you were diagnosed and have you finished your treatment ?

freddie - nice to see you around, and especially that you’re here offering experience/wisdom/hand hold, and that you are still fine

aimlessly - for as long as my blood counts are normal, I’m good for any activity. I’m tested every 3 months,and was normal at start of Sept. so I’m following a fairly standard half marathon training plan, and running 4 or 5 times a week, with one or two cross training days and at least one complete rest day a week (which was today)

lesley I have a lovely yoga/Pilates instructor who is brilliant with breath work. I’ve no idea if it really works but it’s certainly not going to harm you, and has many advocates who say it definitely helps

I suppose I’m an oldie - 58 , but I had my only baby late at 42 so have a 16 old boy. His reaction has been a bit perculiar, very disinterested and detached but it probably is a mask of his true feelings . How did others children react ?

ineedabiscuit with the lymphnodes... from what i remember a clear ultra sound was deemed a good thing but not conclusive as there can be micromets...so too small to pick up... but I couldn't say what the likelihood is percentage wise. I'm pretty sure tho that anything major would be picked up on ultra sound...
Waving back leslie and great about your breathing
And twitter will be thinking of you with scan results

ineedabiscuit I was diagnosed in Feb 16, and my active treatment took 6 months. I'm on letrozole, adcal, and I take venlafaxine which is anti anxiety, they are supposed to help with the hot flushes but I'm not sure they do, they do help me cope with them though! I also have 6 monthly injections of zoledronic acid for 3 years, I have my last one in Jan 19!
My kids were younger, their schools were great, but each one dealt with it differently tbh, I was honest all the time but only told them what was actually happening at the time, no promises and no speculation.

And hello ivampire I've been quietly admiring your sporting prowess. And I second pilates for anyone and everyone....

Hi
Freddie - thanks for that, I was just wondering... probably thinking too much !
Pepper - so you’re nearly done - sounds like it’s been a long haul , so glad you’re soon ending your injections soon.

Yes my DS and I are very close as it’s normally just me and him as DH works abroad returning only a couple of days every month.. I just hope he coping ok as I told him in a very matter of fact but positive way , but he is more sensitive than he likes to let on !
Lesley - I have asthma , normally only triggered by infection but have noticed I’m quite test chested since op . What are these breathing exercises ? Glad to hear they’re working for you .

Tight-chested not ‘test chested’ !

Ineedabiscuit probably busyness knowing my hospital.

I had 3 weeks between lumpectomy and lymph node results; met the radiotherapy doctor and agreed to treatment 2 weeks after that. My radiotherapy planning today is another 6 days after. Radiotherapy itself finally starts 15th October. I presume the clinical timescales are being met.

Just popping in to wish TQ all the luck in the world for your results today. Massive hand hold and virtual hugs