CANCER SUPPORT THREAD 58 - New thread, new year, but the lacies are still here! Please join us if you have any sort of cancer, or are waiting for test results

[WhatWouldLeslieKnopeDo]

Happy New Year! may 2017 bring health and happiness to us all

Welcome to oldies and to newbies. If you've just been diagnosed then this is the place for you. And if you're waiting for test results then please pull up a chair. We will hold your hand while you wait, and hopefully we will be able to send you on your way soon enough. If it isn't the news you hope for then we will be here for you.

Our previous thread is here

Following on from royalmama's suggestion (see, you're not just famous for typos!) I have compiled some of the excellent advice from the previous thread and I will post it below. I've divided it into sections to make it a bit more manageable. Please give me ideas on how to make it better for the next thread! :)

Lacies' guide to cancer

Disclaimer: none of us is medically qualified and everyone is different. This is not medical advice. Please check with your medical team before making any changes.

This is a work in progress. If you see anything that is incorrect or if there's anything you think should be added, please either post on the thread or PM me and I'll add it to the next edition.

This is just a summary of some of the advice given in recent posts, but please don't feel that you cannot ask questions.

There are not really any rules around here, though we tend not to be too keen on head tilting or talk of "bravery". Our main rule is DO NOT GOOGLE. Especially when you are waiting for a breast clinic appointment (or equivalent for other cancers). Wait until you have a concrete diagnosis (there is a good chance you will not be diagnosed with cancer at all!) and then stick to legitimate websites.

General tips

• Cancer patients are eligible for a medical exemption card for prescription charges - there is some information on the NHS Business Authority website
• Get a notebook to take to all appointments and write down any questions you have in between appointments so that you do not forget them
• Take someone to results appt

• If you need travel insurance, you may be better with a illness/cancer specialist provider

- Check whether you have critical illness cover etc. - Get paperwork etc. sorted before starting treatment as you may not have the energy - For those with young children: arrange babysitters/playdates, inform the school so they can provide support, prepare distractions e.g. DVDs for when you are tired - You might have a local Maggie's Centre or Haven (breast cancer only) where you can get support. Some towns also have their own cancer centres. -

Tips for chemo

• have a dentist check up (dental treatment is best avoided during chemo due to infection risk and some types of chemo can damage teeth)
• Consider a cleaner and/or laundry service to relieve some of the pressure at home
• Fill freezer with pre-prepared meals or buy some ready meals in case you don't feel able to cook
• Accept offers of help e.g. with school run
• If you want a wig, try and get it sorted before starting chemo
• Keep a symptom diary so that you can get to know the pattern and so you do not forget anything in between oncology appointments
• See if there is a Look Good, Feel Better workshop near you - they are especially useful for advice on disguising missing eyebrows and eyelashes
• You can find information about the individual chemo drugs or regimes on the Macmillan website here (also ask on the thread as lots of posters here are likely to have experience of the drugs you're on)
• Stock up on things you might need such as loo rolls, flannels, soft toothbrushes...
• Audiobooks can be useful if you are too tired to read
• Consider packing a hospital bag in case you have to go to A&E with an infection (see below for list of useful things to take to hospital)
• Take some distractions to chemo with you so that you do not get bored (e.g. book, tablet, puzzle book, crochet...)

Tips for a hospital bag

• Earplugs
• Eye mask
• Drinks and snacks (hospital water often tastes funny!)
• Flip flops for showers
• Phone charger
• Notebook and pen
• Change for refreshment trolley, vending machine etc.
• Front-opening pyjamas might be useful after surgery
• I haven't put any bras here as recommendations seem to vary, so post on the thread if you are having breast surgery and people will be able to suggest a suitable post-op bra depending on your requirements
• Sweets for dry mouth
• Wet wipes and dry shampoo to freshen up if you cannot shower after surgery
• Hand cream and lip balm as hospital can be very drying

Useful websites

• Macmillan
• Cancer Research UK
• CRUK science blog - this is interesting and very useful for getting the facts behind any big cancer headlines!
• Breast cancer care

amber's words of wisdom

If you've read through any of our threads then you're likely to have come across reassuring posts from amberlight. She is not a doctor, but reads lots of research papers and provides us with the highlights. I have selected some snippets from the last thread that seemed most relevant. If in doubt, or for more information, please refer back to the original posts which are on the previous thread here

• Found a lump? 9 out of 10 will be benign.
• Found out it's breast cancer? 19 out of 20 will be just in the boob. And can now be removed/zapped/poisoned successfully.
• Found out it's breast cancer that has spread beyond boob and armpit? If it's in just one other place, we're seeing results where 80% of those can still be zapped/surgeried/poisoned and it works.
• If it's in more than one other place, e.g. liver, bones, lungs, then teams can give up to seven different forms of 'holding treatment' for many sorts. That means that it converts it to a long-term nuisance, similar to living with diabetes or similar. Annoying, certainly. There are no guarantees. Some will have a sort that is truly tricky. We'll never deny that.
• Pretty good research happening around sensible amounts of cheery exercise, e.g. brisk walk every day. A glass or two of red wine now and again. Vitamin D. Curcumin and black pepper supplement. Lactoferrin supplement. Avoiding bright white/blue light at night as much as possible. Having a cheery social network. The oncology journals are reporting the findings on these. Talk to your teams about what they think might help.

• I know that sounds weird, but (generalising) faster growing cancers are greedy, and drink chemotherapy and other potions at top speed... thus dying horribly and fast. It's the slower growing ones that can be more tricky. On the oncology graphs, the difference in life chances between slow growing and fast growing is barely enough to register. Both are excellent now. It's just info for the specialists, so they know which potions and zappings to use.

I often forget to do this when starting a new thread, but we used to always post a quick summary of our diagnoses which is helpful for new posters, and for oldies too. So here is mine. Feel free to post yours too, though don't worry if you'd rather not.

Diagnosed with stage III bowel cancer in October 2012; pan-proctocolectomy with ileoanal pouch anastomosis; six months of chemo. Routine CT in March this year showed lesions in both lungs; PET scan confirmed stage IV colorectal cancer; now having chemo - FOLFIRI and cetuximab; CT scan in September showed mets stable/improved, next scan due soon

Right, replying to posts on the old thread...

Thank you all for New Year wishes and the same to you I hope everyone is enjoying the evening.

Just a quiet one here. It's just as well I had no plans as the antibiotics for my tonsillitis are causing various problems with my pouch we have just watched a murder mystery thing which was quite entertaining

Halfbaked how badly would it affect your finances to stay off? I imagine in some ways it will be a smoother transition for the temp and the children (are you a primary teacher?) if they take over from the start of term. But that's not to say you should let that stop you if you really feel up to going in. My concern would be all the germs. Lots of viruses seem to be around at the moment and it would be a huge pain if you caught something which further delayed you starting chemo!

Isadora I hope you get a reply from your consultant soon. Otherwise is it something your current team could look up in your medical notes? I hope someone can help! I really don't think the helpline would think that. Nobody would query someone with the BRCA genes or a strong family history being at the clinic or seeking support from a breast cancer charity. It is a shame that your aunt and cousin are not understanding.

It sounds like you need more information. Like, would a mastectomy completely remove the increased risk of breast cancer, or would you still be at a higher risk due to any tissue they could not remove?

It's a big decision and there's no need to rush into it. Even if you put it off for a year or two, presumably the option would still be there if you changed your mind :)

ArgyMargy well done for telling your children, and I am glad that it has been a weight off your mind. I don't have any children, but dreaded telling my sister. It felt much easier once it was out in the open though! Good luck with your other tests

helly what do you do? (Don't say if you would rather not.) I hope that your return to work is as smooth as possible. Are you doing a staged return? Be gentle with yourself, especially as you aren't thrilled to be going back!

A few posters have been quiet recently so just checking up. Please don't feel any pressure to reply if you'd rather not. And sorry if I have missed anyone.

Stila how are you doing?

changingnameforthispost I fear I have may have missed in my recent muddled-ness. Have you rejoined us under your usual name? If not, are you still around? How did you get on?

bobdylan I know you're taking a break so don't worry about replying, but just wanted to say Happy New Year and that I hope you've managed to put it all out of your mind for a bit and enjoy Christmas :)

HollyBollyBooBoo how did you get on at the breast clinic? Hopefully you've not posted again as it was all clear, in which case you probably won't see this!

Goldensunnydays81 how did your operation go?

ExitPursuedBySpartacus you've been quiet. I hope you are OK (obviously no pressure to post unless you want to!)

triplets how are you getting on? I hope chemo is not making you feel too grim

InWithTheOutlaws you must be almost finished chemo by now? I hope the T has not been too unkind

toomanybottoms have you had your surgery yet? I hope you are getting on alright

labradottie I hope you are now fully recovered from your surgery and had a good Christmas

rovercat have you had your last Herceptin yet or will that be in January? A good way to start the new year either way :)

useristired we haven't heard from you for a while. How is your chemo going? I hope that it is bearable

lookingforbaubles I hope that you have had an uneventful few weeks and enjoyed Christmas :) good luck for your op in January

dahliaaa thinking of you and your DH

babynelly2010 I hope that your pregnancy is going well and that your team helped you make a decision about surgery that you are happy with

popperdoodles I hope that your son has had some answers and that it is nothing sinister

doraismissing how are you? Sorry, I've noticed that your question about tamoxifen/anastrazole got a bit lost in between other posts. What did you decide or are you still thinking about it?

Elmindarina I hope that you are fully recovered from your treatment now and that your toddler isn't tiring you out too much. How is your anxiety?

Mummyshortlegz how was your appointment? I hope you got good news :)

WorriedWife2016 how was your surgery? I hope you are healing up well and that the next stage of the treatment plan is not too gruelling

debska how are you? I hope you had a good Christmas

SuffolkingGrand I hope that your son's treatment is going well and that you have managed to fit some Christmassy things in around hospital appointments. Thinking of you and your whole family

Sorry, I am going to sit on my hands now until someone else posts so as not to fill up the thread completely

You're a complete and utter star Leslie. This is genuinely a public service! Thank you.

I'm only a lurker but one that is behind the Lacies and sends love and positive vibes.

Thank you Leslie you are a wonderful person 😊

Quick addition to the guide... (Thanks javabean for some excellent tips)

Tips for surgery

• Follow surgeon's activity restrictions post op
• Be prepared to get a bit emotional immediately after surgery. There will/may be pain, swelling, numbness, large incisions, drains and you might not have a nipple. You may come out wishing you hadn't had the operation, though this phase may be short-lived. Marshal your DP/friends/whatever form of emotional support you need to get you through
• Don't take the pain silently, discuss anaesthesia options before surgery, and after surgery you can ask your physician for appropriate medication
• Keep a glass of water (straw helps is you can't sit up properly in first few days) or bottled water (I liked the sports type squeezy kind, but then again I had an unaffected arm) handy at bedside especially at night for when you get thirsty. I felt very dehydrated after surgery
• Pre op, check with your surgeon or BCN on what to buy beforehand: support bra (what size; any recommended type or brand), bra extender, knickers, etc. Don't go overboard buying loads as you're likely to move out of oversize bras and the extender relatively quickly
• Post op advice can vary: check with your surgeon or BCN on support bra, binder, compression garments, when you can shower/have a bath/swim, etc.
• If you want it, request a copy of your post-surgical pathology report
• Explore scar reducing options with your GP/surgeon -- some items may be available on prescription: Kelo Cote, silicone sheets, post-surgery massage
• Work with physiotherapist on regaining range of motion and strength (example online brochure); always check with surgeon/physio on what exercises are appropriate and when. picked up the link from forum.breastcancercare.org.uk; some patients hadn't received advice about post op exercises when sent home, or hadn't been referred to a physiotherapist
• Ask about lymphoedema risk after surgery and if there are any precautions you should know about

Lovely to see you again 1234hello :) and thank you Argy. To be honest it's partly selfish. I don't have a job and I'm not in a position to apply for one so doing bits and bobs for this thread makes me feel a bit useful

It's very nearly midnight so happy New Year Lacies! I really do hope that it's a good one for you all

Raising a non-alcoholic glass to departed Lacies too

Leslie, this is fantastic -- I PM'd you some suggestions, hope they got through. A great idea, royal!

Argy and Halfbaked, good luck with it all, in my head the Rocky training music is playing for you

Isadora, hope you get to speak with others who can give you more information. I found this article which may (or may not) be helpful: ww5.komen.org/KomenPerspectives/Why-are-rates-of-bilateral-mastectomies-rising-.html

I suppose many healthcare professionals tend to view the decision purely from a recurrence/survival statistical sense -- which is not to say it's invalid, in fact quite the opposite. But I think an aspect of the decision is not just the 'peace of mind' angle mentioned in the article, but also the fact that some women want to be able to take control of when they are out of commission for surgery (a friend in NY had a bilateral mastectomy in November when she had one affected breast; she is in her thirties and runs her own small business), but there is a lot to weigh up

Happy new year everyone!

Wishing you all a Happy New Year Thanks, Leslie for the new thread, and collating info.

Potted history, as suggested - diagnosed with ER- HER2+ Stage II Grade 3 left boob breast cancer Jan 2011, lump 2.3cm or 4cm, depending on which specialist we believe.
Had a port put in and had 4 x FEC chemo, 4 x Tax chemo, (which I worked through, largely because I needed a slap of some sort to make me see sense, not because of noble or martyred tendencies ) then a lumpectomy, a few tries at Herceptin which absolutely hated me so was taken off it (this is rare - it's fine for most people, but I was exhausted, huge nosebleeds, high blood pressure, very stiff joints). And also 15+3 radiotherapy sessions.
Since then, after-effects of that lot include peripheral neuropathy (numbness/sensory grr in hands and feet), some pain from the surgery, and a benign tumour in the boob which could have been from the radiotherapy (surgery to remove that in early 2016), and (most recently) dodgy heart electrics (ventricular ectopy on exercise/stress).

Still here, still geeky, still reading up on the oncology papers pretty much every day.

Not a doctor or cancer specialist of any kind whatsoever, just have access to a lot of info. Always always check with your team about stuff and follow their best advice.

Thanks Leslie you are doing an amazing job with this thread! I haven't been on for a few months now but like to lurk now and again!

I have a question and wonder if anyone might have advice? Im 48 and on Tamoxifen, I was pre menopausal when I started it (was having regular periods). My periods stopped pretty much straight after starting the Tamoxifen and I haven't had one for about 9 months now. Do I still need to use contraception? Im guessing I wont be ovulating so wouldn't get pregnant? We use condoms as obviously i cant use any hormonal contraception, but i must admit it would be nice not to have to use them!

Hi MissyB1, www.nhs.uk/ipgmedia/national/Macmillan%20Cancer%20Support/Assets/Tamoxifen(CB).pdf might be helpful. It recommends contraception even if you don't have periods.
Drat.

Just popped on to say happy new year to everyone.
I still read but don't post much due to not having a lot to say. I had breast cancer 3 years ago and now trying to get on with things and enjoy life though of course it's always still there in the back of my mind, or right at the front depending on the day
My heart goes out to those of you just starting treatment, it's such a scary time. However take it day to day and you will get through it and out the other side
This thread was a lifeline to me going through treatment and Leslie you are a star putting all of the advice together ⭐️⭐️⭐️

Happy new year everyone. Thank you Leslie for this amazing new thread, however do you remember all this?

Missy, I'm in the same situation as you but a bit older at 52. I had an appt with a gynaecologist a few months ago because of some issues the tamoxifen was causing and I asked him that very question. The answer was a definite yes to continuing with contraception and for at least another year or so. Ovulation could still be happening therefore pregnancy not impossible.

amberlight thanks I feared as much, boo hiss!

mrsrhod I meant to ask my breast surgeon at my first year surveillance just before Christmas, but I was so busy moaning about the hot flushes that I forgot!
He recommended acupuncture for the hot flushes so thinking about giving it a go.

It's worth a try missy. I went along to the Haven in Leeds in 2015 to give it a go but had such a bad experience with the practitioner that I walked out before she started. She was trying to give me a counselling session too which I was definitely not up for so I left. But I've heard it's often effective.

Great start to the new thread and new yer Leslie. Thank you for all the work you've put into it

Evening all and here's to a happy and healthy new year to everyone.
MissyB I was suffering badly with the hot flushes, I tried a couple of acupuncture sessions but it made no difference. I'm now taking venalfaxine which is an antidepressant normally but seems to have helped. Still get flushes but milder and fewer - no longer have the ones that throb through your whole body thankfully.
Leslie top effort with the advice and new thread
Potted history: grade 2, lobular invasive breast cancer diagnosed Feb 16. ER & PR + HER2 neg. Tumour was 40mm with lymph nodes involved. Had lumpectomy, chemo and rads. Now on tamoxifen until I can move to letrozole.
I get to start the year with 2 appts on Wed, surgeon then oncologist. Hoping one of them can give me some help with the cording which is spreading down my arm. You can actually see it under the skin across my inner elbow!
Love to all.

Hi I'm halfbaked, fairly new to this group. Diagnosed in December with triple negative breast cancer, grade 3, stage not yet decided. 3cm tumour and possible lymph node involvement- awaiting chemo.

leslie amazing work, the lists are great thank you!
java love the idea of the Rocky theme playing, it's in my head now. I'll have to remember it before each appointment!

Well embarrassingly my mum put a complaint in to the CEO of the hospital, however she got a reply the next day and on Tuesday morning they will investigate and get back to me, so fingers crossed for an earlier appointment. I hope they don't hold it against me, I didn't expect her to go in all guns blazing

Leslie I teach secondary, but in a boarding school where pupils tend to stick around when ill. I hadn't even considered not getting ill before chemo, so that's a factor to consider. Hopefully they can push the appt forward. I interviewed and handed over to my temp before Christmas, so it would be easier for them to start this term afresh.

I'm very lucky that I get 6 months full pay, but I've just become a single parent and finances are very stretched so I need to be careful about time off. It's such an unknown in terms of how long everything will take and when it will happen.

to everyone here

Well done Leslie. I'm sure this will be very helpful
Feeling a bit down today because of what lies ahead and spent the day mostly in bed. Hopefully I'll perk up in the next day or so.
Best wishes for 2017 to you all.

Oh chewing, I'm not surprised you're approaching this year with trepidation. I hope they get you on a cocktail of the good stuff and you don't have any more messing around. If there are two people on here who deserve a break its you and Leslie.

Hi chewing just thinking about you and sending a hug. Completely agree with Mrsrhod.