Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

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 with you to results appointments
• 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
• If you have an iPhone you can record details of your diagnosis, medication etc. in the health app so they can be accessed in an emergency

Tips for chemo

• Have a dentist check up and hygienist appointment beforehand (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

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. The link is from the Breast Cancer Care forum - 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

Useful links

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
Shine cancer support (for people in their 20s, 30s or 40s with cancer)
Beating bowel cancer - some very useful factsheets/leaflets available to download
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
Mumsnet thread for those supporting a relative with life limiting diseases - I hope they won't mind me sharing the link here as they seem like a friendly bunch, but this thread may be of interest to anyone with a relative with cancer

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 that seemed most relevant. If in doubt, or for more information, please refer back to the original posts which are on thread 57 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.

This is a bit of a roll call for those who posted on the previous thread, but have been quiet recently. Please don't feel obliged to reply if you do not want to. Apologies if I have missed anyone

Every time I do this I am amazed by how many people have passed through each thread! And newbies might be relieved to know that various people posted waiting for test results and got good news :)

javabean33 hopefully you are getting on well with your Tamoxifen and getting back to normal now

missyB1 how are you?

Fresta how are you and how is your MIL?

petitepeach are you having chemo at the moment? I hope it is going well if so. Are you using the cold cap?

Itsallabout I hope your results were as good as can be

Mysillydog I hope you are getting back to "normal" now that your treatment has finished

weebarra I hope your biopsy results were OK

wineoclockthanks are you still unable to post on long threads? I always think of you when I start a new one! :)

helly18 how is your hair doing? And how is the new job?

debska have you had your radioiodine now? I hope it went well

mintyneb have you seen the cardiologist? Will you be continuing the Herceptin?

Mybloodykids are you having chemo? I hope it is going well if so

useristired how are you?

Cookiepuss have you finished chemo yet?

rovercat how are you? Has your white blood count improved now? I hope you are happily getting on with life post-treatment :)

lookingforbaubles I hope you and your remaining kidney are doing well!

toomanybottoms are you eyes alright now?

LaaDeDa how is the new chemo regime going?

Isadora2007 have you made a decision about your surgery yet? And indeed have you had the surgery? I hope it went well if so

xxchristenxx I hope you got some answers from your GP. How are you doing?

JoandtheTribe I hope you are well

bobdylannumber1 I hope you are fully recovered from your radiotherapy now

Grismo sending you good wishes if you're still reading :)

triplets how are you getting on?

hotchocforme how are you? Are you still having problems with the Zoladex?

winkywinkola we never heard back from you after you'd seen your GP - hopefully everything was OK

charliebear78 are you still around? Are you posting under a different name? I saw someone with a similar history on another thread so perhaps that's you. I hope you have got some answers about your symptoms by now!

Goingtobeawesome have you had a definite diagnosis now? I hope it was something easily treated

balkanscot did your mastectomy go ahead on 7th April? I hope you are recovering well

CremeDeSudo how are you getting on?

Challie60 did you move to the specialist unit in the end? I hope that it is/was comfortable. How are you?

Milliways did you get your appointment? I hope it was all OK

SeeMyVest thinking of you and hoping that your procedure went well

doraismissing how are you? I hope that your panic attacks and anxiety have improved

almay hopefully you got your biopsy result and all was well?

LittleGreyCatwithapinkcollar how was your pre op and have you had the surgery yet?

aussiegonewrong how are you getting on?

Daxaki how were your scans? Have you started treatment? Are you getting on OK?

AnnaFiveTowns how did the scan go? I hope everything is OK

Theresomethingaboutdairy have you started chemo? How is it going?

And a special mention to our newest newbies GoldInTheAirOfSummer, Wishingitwaswarm, VLCos and ilovechocolates - good luck with your appointments and I hope you all get the best possible results

If you feel able to, it is helpful to post a quick summary of your diagnosis at the start of a new thread. It saves us all trying to remember everyone's exact situation, especially those of us suffering from chemo brain

Here's mine:

Stage III bowel cancer and FAP diagnosis following colonoscopy in October 2012. Treatment was surgery (pan-proctocolectomy with ileoanal pouch anastomosis) and six months of chemo (XELOX). Stage IV diagnosis in April 2016 (mets in lungs and lymph nodes) so I am now having chemo (FOLFIRI and cetuximab). I recently had a permanent ileostomy to address issues from my original surgery.

That's quite enough posts from me! I hope that everyone is fast asleep by now

Thank you so much for thinking of me. I read often and like to keep "abreast" 😂 of everyone's news.

Mine isn't exciting. Other than I have decided to go ahead with a double mastectomy plus full own tissue reconstruction (sorry I don't know the technical name yet!) as I have had the go ahead from the psych appt. (as I said to my teen daughter- I told all the lies necessary to be thought of as sane!)
So now it's a matter of waiting to see when that may be- probably early next year due to waiting list and a course I am committed to doing which doesn't finish until Dec.

That gives me time to lose some weight and get as fit as possible to face the surgery.

I feel sad when I'm having a lovely time in bed with my husband and my boobs are being such a source of enjoyment... but then when I am trying to exercise or to buy a nice top and my mahoosive boobs don't even squeeze into a size 20 then I feel excited about having smaller ones. Even if they may have no nipple...

💕💕💕 to all the lovely lacies here. I'm honoured to be included.

Isadora I'm glad your surgery has been approved (well done on being declared sane! ) I am sure you'll have plenty of fun with your new ones too. Have they offered nipple reconstruction? A friend had some quite convincing nipples made from skin sort of pulled together. I have no idea of the technical name or how it is done or whether it is suitable for you

Morning lobely lacies, old and new..passing by or residents:)
A massive thank you to our leslie for her invaluable efforts and patronage! i was diagnosed in June of 2015. I has breast conservation surgery in July, the chemo dose dense, then radiation therapy. I am currently on hormonal tretament( anastrozole as the chemo then tamoxifen brought on menopause) I can hardly believe I actually went through all THAT! Many tough days and nights and at each follow up since I finished my treatment they find me a good excuse to worry all over again! But the great news is that throughout this time and still running..this thread has been instrumental for me to cope..those we know outside of here who have not been on this roller coaster have little idea what it is really like, no matter how much they sincerely want to help.
I pray those who have come by here, whether they have already been diagnosed or awaiiting results, find the support and understanding they so much need.
Best wishes to you all.

Thanks for the shiny new thread Leslie! xx

Wow Leslie, thank you so much for spending all that time creating a shiny new thread. Your memory is a thing to marvel at.

Quick recap, diagnosed May 2014 aged 50. Lumpectomy, 15 rads sessions, tamoxifen and now anastrazole. Just had three year checks and looking ok so far.

Royal is so right to say that no matter how lovely your friends and family are they can never completely understand fear associated with cancer but you will be understood here.

When I was newly diagnosed this thread kept me sane and I loved hearing from women several years in who were doing well and getting on with life.

Utterly grim day here, rain and more rain. Going to the gym, we've booked a holiday so jelly belly needs much attention. Hopefully my gp surgery is working properly today and I can get test results. I hope it hasn't affected anyone here too badly, I saw a lady on the news last night who was unable to have her rads, very upsetting and one of many I assume.

Thankyou for starting the new thread @WhatWouldLeslieKnopeDo .

I was diagnosed with a neuroendocrine tumour in my bowel in February after several months of investigations. I have hopefully been incredibly lucky in that surgery will cure my cancer.

I had keyhole surgery a few weeks ago and am at home "recovering". I have used quote marks because I think that I may feel worse than I did before surgery. I have just finished being sick and having the worst diarrhoea of my life which is now a constant issue for me and so right now I don't feel that lucky which is probably very selfish. Hopefully when this horrid stage passes I will get some perspective.

@WhatWouldLeslieKnopeDo thanks for thinking of me in this new thread. You work extremely hard to organise this thread.

I forgot to ask in your last post you said you had very little symptoms before being diagnosed . Do you mind me asking what led them to perform a colonoscopy if you didn't suspect anything ?

My gp wanted me to do three samples for hidden blood testing. Typically since she gave me the sample bottles I have only been once !

Hello "waves" to everyone else !

leslie well done on setting up the new thread and thanks for asking after me!

I'm still waiting for an appointment with the cardiologist . It's 4 weeks since the oncologist made the referral and I've heard nothing despite them chasing for me. In the meantime I'm in limbo, no heart investigation, no herceptin, no idea if this is the end of treatment or it will restart and I'll have 6 more months to go. I'm on a low dose of rampiril for my heart but it's giving me a nasty dry tickly cough that at times makes me feel like retching so I'll be glad to find out if I really need to be taking it.

Anyway, that's my current moans and groans. As to a brief history - I was diagnosed with BC in July 2014. Had chemo, 2 WLE, rads and a year of herceptin. Then I was diagnosed with cancer again in the same breast in June 2016 . I had a mastectomy with DIEP reconstruction followed by chemo and another year of herceptin. Currently 'on a break' from this as scans have shown my heart isn't too happy with all three treatment.

I don't come on here as often as I used to but try and read the thread each week and will post if I think I can help

Hello and Thank you leslie for giving me a mention!
I am indeed the same poster you may have seen still worrying-I felt like a nuisance so changed my name!(silly really)
Anyway after 5 months of symptoms pretty much staying the same I have finally been referred for a Colonoscopy-very early days as not even got my appointment letter/date through yet-but feeling positive that I am closer to a final answer(whatever that will be) and then can hopefully move forward.
Will come back to update,hopefully all will be well-I will be thankful to have all this worry and wondering behind me!

Good morning everyone! :)

royal that's a really lovely post how are you getting on now?

mrsrhod I must confess I didn't remember all of that - I had a little help from the search function! have fun at the gym. Where are you going on holiday? I hope you h as a lovely time

Tw1nset sorry to hear you are struggling with the side effects. Have they given you any medications to help? I hope it eases up soon

VLCos I had a very small amount of bleeding about six months before diagnosis. It was bright red and the GP diagnosed piles (with no examination). It stopped after a couple of weeks of the cream. Then about four months later I had some excruciating stomach cramps and GP prescribed mebeverine which stopped them. A few weeks later I passed a large blob of bloody mucus. I saw a different GP who did an examination, found no evidence of piles and referred me urgently for colonoscopy. I think I had maybe one or two more episodes of bloody mucus. But everything else was normal! I'd previously had some IBS type issues, but they had almost completely disappeared.

minty I'm sorry you're still stuck in limbo! I hope you get an appointment soon and hopefully you won't need the ramipril long term

charlie I'm glad you've got your referral. Hopefully that'll give you a definite answer :)

Have a good day everyone!

Leslie Thank you so much for starting this new thread. You are a wonderful support

Diagnosed with stage 3 or 4 (they won't tell me) ovarian cancer in March. Spread to lung and possibly liver too. Just started round 2 of chemo and waiting for tumour to be reduced enough that I can have an operation. Having Carboplatin and Bevacizumab & Taxol (Taxol is weekly) as part of ICON8 trial. Next CT scan is 5 June.

Massively pissed off and still mourning my beloved spaniel who had to be pts in January. Struggling with chemo brain - though it has been better this round. Coping well with hair loss - it will come back! Can't be doing with wigs - every time I think about one my head itches!

My cancer discovery story is [[https://www.mumsnet.com/Talk/general_health/2865470-Obese-but-with-pretty-normal-legs-arms-etc-but-very-fat-enormous-belly-Ovarian-cancer-diagnosis-title-edited-by-MNHQ-at-OPs-request? here]]

Leslie, just to Menorca, we've been going for years. 20 minutes to Leeds/Bradford airport then 20 minutes to the villa when we get there. It's easy and as we're only there a week we settle in straight away and it's easy. This will be the first time dh and I have been there without our daughters though. As soon as we get back dd1 will be moving out to live with her boyfriend so all change.

Good afternoon Lacies
Leslie thanks for all your hard work setting up the new thread
I have been on a lively roller coaster ride so far. Diagnosed with a rare aggressive cancer in the breast in June 2016. First line and second line chemo didn't work. It spread to bones and liver and I was given approx. 6 months in December. Paid privately for another opinion and had a biopsy which showed there were other treatment options so I'm now on 3rd line chemo and Herceptin.
These threads are great for advice and I have found out many things that I otherwise didn't know about. My consultants think I am a pita with all my questions but I carry on regardless

Hello Lacies, and thanks for the new thread Leslie.

Diagnosis Nov 2016 aged 44, HER2+/ER+/PR+ invasive breast cancer, mastectomy with LD recon Jan 2017, 8/14 nodes positive, 2 tumours Stage 3a. I've recently finished chemo, 12 weekly paclitaxel and started rads yesterday. I cold capped and kept most of my hair. Other treatment includes herceptin, Zolodex and AIs. I'm also a patient of the Care Oncology Clinic and on their protocol of metformin, statin, anti-parasitic/antibiotic. I have a young DS and lost DP to kidney cancer in Jan 16.

Sorry if that was a bit long!

Minty, I am on a break from herceptin too as my LVEF has dropped by 11% since I started, I've only had 3 treatments so far. I have a cardio appt next week, so that's about a week and a half since I was referred. I'm sorry yours is taking so long, I hope you see someone soon. Heart disease has always been a huge fear for me due to family history, and the reason that I refused anthracycline chemo. It looks like there may be another option for HER2 soon with neratinib, but goodness knows how long it will take, and once it's licensed whether or not it will be approved for NHS use. I feel like I got BC at the 'worst' time (not that there is a good time!) - too late to take part in any of the latest drug trials, but too soon to be able to take advantage of their findings.

Had my second rads today. I'm convinced that my skin has started itching, but surely it's too soon?

I reminded my BCN that I was due to start AIs - oncologist had put aromasin/exemestane in my treatment plan, but she has prescribed letrozole instead, saying that they're all the same. I'm not convinced, but I can't find much info about why one particular AI is chosen over another or if one is better - anyone know anything?

Sorry to hear you're on a break too flippy. My ejection fraction has been falling steadily with each scan and has gone from 72 to 45. When I was on herceptin before it stayed at 60-64 pretty much the whole way through.

I get my treatment at my local hospital but it's supplied by an outreach team from the Marsden. It means that the cardiology referral goes to the Royal Brompton (the 2 hospitals are side by side in London and so they have an historical relationship) and being a specialist heart and lung hospital it probably gets more than its share of referrals hence the wait (I'm assuming). Typical though that an alternative to herceptin is not quite on the cards just yet.

Sorry I can't help with the hormone side of things, that's the only treatment I have managed to avoid so far!

Twitter once it has spread to the lungs then it's stage IV. There's a bit of information about it on the CRUK website if that helps

mrsrhod that sounds very relaxing :)

chewing carry on being a pita!

Flippy how was it apart from the possible itchiness? I hope your skin doesn't react too badly

minty is it far for you to travel to the Brompton? Bit of a pain they won't just refer to your local hospital so you could be seen quicker!

Hi everyone,
Thank you for thinking about me, my eyes are still causing me problems unfortunately. Noone's really sure why and its now just a case of waiting to see if it improves. I got myself worked up about it so my oncologist sent me for a brain MRI just to reassure me there is nothing there which there wasn't so went back to opticians who changed my glasses. It still continued so they spoke to oncologist again who said that its now long enough since chemo for it to no longer be a side effect so back to the opticians who have played around again with my glasses. Had them a week now so hopefully will get used to them soon. The oncologist said to limit use of tablets/phones etc in case thats contributing to it which does help a bit so not sure if its that, the chemo, tiredness, stress or something I'm just imagining. When I'm busy it tends to not be noticable so try to ignore it the best I can. Some days it almost seems like I need something to worry about, so if its not that, its an ache or pain somewhere!

I was diagnosed Jul 2016 with triple negative breast cancer, (grade3) 25mm lump no nodes (stage2a). I had FEC-T chemo first, a lumpectomy in Jan and then 4wks of radiotherapy. From surgery, I got clear margins and nodes (4 taken). Although I could no longer feel the lump after chemo there was still 14mm lump found after surgery which I'm a bit gutted about as was hoping to get a complete response. Because of this, my oncologist has suggested I take Capecitabine as some new studies have shown that taking it after standard treatment decreases reoccurance especially in triple negative cases. So I'm now 1wk into take it which is going ok so far. My oncologist described it as "light" chemo compared to FEC-T with a lot fewer side effects so hopefully I'll manage to full lot of cycles and it does me some good. If anyone has a triple negative diagnosis, it might be worth mentioning it to your oncologist as mine seems to think the results are looking pretty positive so far, although its not standard practice yet. The study is called Create-X.

Sorry I dont post much, I do lurk a fair bit to read everyone's news and updates but never really have anything useful to help anyones questions. I found keeping busy is my way of coping with it all and also try only allow myself a small window of time to dwell on things otherwise I tend to find my thoughts spiral out of control.

I hope everyone is doing ok and anyone going through treatment isn't suffering too badly :)

toomanybottoms sorry your eyes are still troubling you, but a relief about the brain MRI. I hope the new glasses help. Good that your oncologist is being proactive about new research :) how many cycles of capecitabine are you having? I hope you don't have any problems with it

@WhatWouldLeslieKnopeDo thanks for filling me in Leslie . How annoying the first GP didn't do a proper examination but suppose you could send yourself crazy thinking what if !

Thanks Leslie - that's what I thought and had read about (not on Google obviously ). I can only assume it's because I haven't had the op yet and they'll wait until they can see inside before confirming.

Thank you :) They've not decided on cycles either 6 or 8, I think the studies didnt really show much difference between cycle numbers so I guess it they are just going to see how I get on. So far I'm more tired but I've also managed to catch a cold from my dc so not sure if its that or the chemo thats causing it. Its certainly a lot easier going than Fec-t. The pharmacist who gave me the first lot of tablets did say some of the side effects can start on random cycles especially things like the hand foot syndrome and sore mouth so it might catch me out down the line. My oncologist said just to take each cycle as it comes and if it does get bad then we can just call it a day and say at least we've tried