Lacies, elephants, potato-based snacks... Whatever we are, this is our 57th CANCER SUPPORT THREAD

[WhatWouldLeslieKnopeDo]

Welcome everyone to another cancer support thread. This thread is open to anyone with any sort of cancer. And we have plenty of hands to hold if you're undergoing tests for cancer. We are always pleased to wave people off with an all clear, and there's plenty of room here if the news isn't what you hope for.

So don't be shy! We are a friendly bunch and there's probably someone who has been through something similar. Nothing is off limits here. Scream, shout, swear, stamp your feet...

I'm sorry that anyone needs this thread, but very glad that it's here. Cancer is shit. But it's a little bit less shit when you have people to share it with.

Our previous thread is here

Afternoon everyone

rocket - I feel your pain with regard to feeling useless; the last time I felt like that was when I had a bout of flu. If someone had told me there was a million quid in a sack on my front doorstep and all I had to do was get to the door and bring it in, I'd have been "meh so what". I don't usually sit still for long as always on the go, so this is going to be a challenge as I will feel like I should be doing something and I will be very frustrated.

The sickness is what I am dreading - I have been advised that I'll be given something called Emend which is pretty good and if that doesn't work they have something stronger in their cupboards.

You have been lucky with your hair as I have been warned it is likely to go by the second round of FEC (about week 5).

Joan - I have been recommended to try Omeprazole for heartburn (I think it's only available on prescription).

Well my ECG was fine, pre-chemo chat with chemo team done and I am due to start cycle 1 of FEC next Thursday all being well.

I sorted out a great wig yesterday - I quite enjoyed trying out different hairstyles but found something that is almost identical to my hairstyle at the moment. I also bought what I call a "Friar Tuck" which is like a headband with hair sewn around it and it is basically for wearing under hats so that it looks as though you have a fringe and some bits of hair at the nape of neck and round your ears. Great for wearing with soft hats round the house as I don't want anyone seeing my baldy look, wrinkled forehead and sticky out ears.

With regard to the Doxataxel the chemo nurse gave me a tip to wear dark nail varnish throughout the cycles. Apparently this drug can react to UV light and damage your finger and toenails but the wearing of dark nail varnish can help minimise this.

Hope everyone has a nice weekend - I've a night out with the guys I train with where I intend to have a few pre-chemo cocktails

flippyneck I had one positive node from my SNB and was given the choice of rads or clearance. I opted for rads after being assured the outcomes are the same for me (statistically) and the rads have a lower risk of lymphedema.
I have cording developing now 9 months after surgery so my advice for everyone is to keep doing the exercises even if you think you're fine!
Seriously interfering with my ability to reach my wine glass this evening...
Hugs to all, you OK leslie and chewing?

to anyone feeling under the weather
Pepper how about a straw for your wine?
I have been feeling pretty worn out this week so have not done a lot. I had some good news today following my request for a second opinion. The hospital called and have made an appointment for me to see their top specialist . They get so many referral requests that they can't see everyone so I am very pleased to have this opportunity. It will be interesting to see what they recommend.
Hope you all have a good weekend.

chewing that's excellent news I hope the specialist is helpful

pepper the cording doesn't sound much fun. I hope the exercises start to fix it quickly :)

Cookie good that you've got your wig sorted and you're all set for next week. Enjoy your cocktails tonight. You may not have any nausea from the chemo, and Emend is good :)

Flippy how frustrating that it's different in Scotland. But good you're keeping up to date with it all.

rocket are you taking antisickness medications? I hope you feel better soon

Jo I have had similar. I can recommend Buscopan for the cramps. It's available over the counter, but double check with the pharmacist. There are several different versions (IBS, cramps etc) but it's all exactly the same medication and dose, just different prices are you taking lansoprazole or similar for indigestion? If not, ask your team to prescribe something. I find Rennies are good for heartburn. They also seem to help with nausea. It sounds really rough. I hope you feel better now oh and if it's diarrhoea, you can take loperamide (Imodium) but obviously take it slowly so as not to go too far the other way!

mrsrhod lovely to hear from you and that life is returning to normal ish :) enjoy your appointment-free time

dora I think most people on here are taking it to prevent recurrence rather than future cancers. But I imagine much of the experience would be the same either way. It is good that there's something they can do to protect you in the future :)

baubles phew! I bet you've never been so pleased to be called unremarkable

Sorry if I've missed anyone

I have an anal fissure it is so painful. I've had it on and off since my surgery a few years ago. It's quite embarrassing, especially as I can't really tell anyone why I'm in so much pain. It has set off my nerve pain, another side effect from the surgery. So I've spent the last couple of days mostly in bed, dosed up on tramadol and morphine!

I hope everyone has a good weekend

Hello Lacies.
Like, mrs, I am fnding it difficult to follow each and every one of you, but I do read the posts and try to be ofany help when I can.
Leslie so sorry you are in pain. I hope the pain killers do their job. 💐
Dorai did read that Tamoxifen is prescribed for this at high rik of devloping breast cancer yes. You may want to discuss this at lebgth with someone who can better inform you. Hope you never need to worry again!
Cookie Emend is great for the nausea. Let us hope you get the minimal of SE troubles.
Waving toeverybody else.
Tutti your absence is marked and I jus hope it means you are resting and do not need to post.
Have a good day all.

Hello everyone I was diagnosed a couple of weeks ago , have had surgery and having treatment after Christmas. Prognosis is good but treatment is a bit brutal. Initially i didn't want anyone to know . We have since told a few friends and family and I have been very upbeat about it all although I feel very scared inside sometimes. Now i would like to let more people know as its starting to feel like a dirty secret and I think my husband needs some support .( and I would like to have some extra
Love and sympathy too lol)but my problem is that my youngest daughter who is much younger than the other kids doesn't know about the cancer. She knows i am a bit ill but nothing else. I don't want some well meaning twit to mention it to her
So should I Explain it to her or keep quiet ?

Welcome debska, but sorry you've had to join us. Is it breast cancer? What treatment are you having? Someone on here is bound to have had the same so might be able to give some tips :)

How old is your daughter? Hopefully someone will have a similar age child and be able to advise more specifically.

I don't have children so my opinion is probably not very useful. But for what it is worth I think it's better to be honest, in an age-appropriate way. Mainly so that in the future they don't feel you have lied to them or anything. Unfortunately cancer is a part of your life now so it seems better to be open about it from the start. My dad had a heart attack when I was younger. He had had angina for a few years, but I had misunderstood what my parents had told me so I was completely shocked and for a while quite angry at them for not warning me.

There are some books for younger children to help them understand without scaring them.

royal how are you doing?

Hello Leslie She is one of my heroes btw. I have got thyroid cancer. Currently on my second op in a month and with a row of staples across my neck so feeling fraaaagile. I am really hopeful that treatment in Jan will knock this on the head . Very lucky because the treatment doesn't involve chemo etc but one off radioidine and isolation till I am less radioactive. Bit pissed off as the people that know have asked my husband how I am but none of the buggers have contacted me . It's not contagious !!!!

Hello debska and welcome to our thread. Thyroid cancer when detected early is one of the easiest to get rid of with hardly any risk of recurrence( my SIL was diagnosed and is totally fine now). Your. Propspevts are very good indeed. Re DC. How old is your DD? When I was diagnosed with breast cancer a year + ago I only told my DC aged 7 and 9 then i had a lump that needed to be removed and then with the chemo and all that i needed the special medicine to try and make sure mummy got no other lumps ..essengially they were ok with this but since then my older DS has realised it is cancer and I did not lie or deny it. I am surprised at how matter of fact he was about it( probably because he has not had to connect any dots!! ) also, and because we have not made it public, he has not had trouble with other people being nasty or curious etc. we chose or rather i chose to keep news of my cancer limited and i am glad i did as it has helped me. People have different opinions re this and there is NO right way about it.
Best of luck.
Leslie thanks for asking. I am ok but anxious as I have a PET scan on Monday as part of my follow up. Although I must say I am not as anxious as my first follow up!
How are you feeling today?

Hello Royalmama I know prognosis is good for this kind of cancer. And treatment is quick which is why i have held off letting her know . She is 7 and we have teenage and adult children too. I will keep an open mind about what we do. X

debska thyroid cancer might have a good prognosis, but the treatment is tough have you had your whole thyroid removed? I had staples in my abdomen and felt fragile enough, so I can only imagine it in your neck. I hope it heals up quickly

royal good luck with your PET scan tomorrow

I hope everyone is having a good weekend.

I've been feeling rather uncomfortable so just been lazing about!

Hello Leslie
Yes had it all removed. Staples should be coming out today. Struggling with medication as I'm feeling very tired and achey. I am feeling very optimistic though X

Good luck with the staple removal :) have you already had the radioiodine or is that still to come? I hope they can get your medication sorted so you are less tired and achey soon. Sorry, I didn't mean to sound negative before. Just didn't want you to feel you couldn't be grumpy about it if you want to, just because you don't need chemo. My friend had thyroid cancer. Actually she posted here at the time, but it was a few years ago now. She complains sometimes that people suggest it's an "easy" cancer to have. I think because the thyroid is so small people forget how important it is. She still needs occasional medication-tweaking. I guess that's a lifelong thing! Anyway, I'm glad you're feeling optimistic. It certainly sounds like you have every reason to be

Hello, I'm due for a L mastectomy and DIEP flap reconstruction tomorrow with the NHS. This thread has been a comfort to read and a source of great tips!

I have a question about giving a thank-you token to my plastic surgeon/team. Is it weird if I bring a box of chocolates today to my marking-up appointment with the surgeon who will be doing the DIEP? Should I just hand it over to the consultant (or the nurse) at the start of the consultation? Or should I wait until after the surgery?

And how would I get another box of chocolates to the separate surgeon who is doing the mastectomy? I'm not in touch with his secretary or anything; I've only seen him twice at the hospital Breast Unit and I don't think that's where his office is...

The things one worries about!

I'm also preparing a list of final questions, which is woefully short and random. I've never been hospitalised before apart from spending

Hi there - I've come for a bit of hand holding and reassurance here. My 3 mth old has a questionable lump on his leg and we've had MRIs and are awaiting a formal diagnosis. It looks as if there's a tumour either deep tissue or in the bone. It's definitely not a cyst or a lipoma. Either way, we're preparing for a diagnosis, biopsy soon and pretty prompt treatment. The MDT is meeting tomorrow to arrange next steps.

When talking with one consultant last week she kept referring to it as a sarcoma, which I understand is a malignant tumour, rather than just a generic 'tumour'? Could they know something which they've not told us yet about it? Or is the term sarcoma used more interchangeably? I thought they weren't allowed to second guess or say things to patients/parents like this without having the evidence to back it up?

Also, at the MRI, the radiologist was talking to her colleague about positioning and so on and said "it's in the bone". I overheard this although I probably shouldn't have done. No one has yet sat us down and spoken to us about what they know and don't know, so this inadvertent sharing of info is upsetting. As you can imagine, it does nothing to reassure us and we're really imagining the worst.
Thank you xx

Suffolk - always a worrying time. So sorry you find yourself here and I'm sorry i can't answer any of your questions. In my experience, doctors don't share their thinking along the diagnostic process, the tests and scans will build the picture for them and then they will discuss. They should be happy to answer your questions at any time. Always ask, however silly you think it sounds. Best wishes.

Java - Ihad left mastectomy with diep In oct. I didn't have rad or chemo, got verbal path report but am asking for copy now. I could shower following day. All the best

Hello for both of you

SuffolkingGrand sorry to hear about your baby. That must be terrifying. The consultant may strongly suspect that it is sarcoma. They will often have a good idea what's going on from scans etc even before they have biopsied, although they are not always right. Also there are different types. I don't know much about sarcoma, but it would be a bit odd to use the term generally. They may already have a good idea what it is, but are waiting to give you the full picture. Do you have an appointment to discuss it yet? There used to be a thread for parents of children with cancer here. I don't know if it's still running. I imagine it would be in the Children's Health topic.

javabean33 welcome and good luck for tomorrow's op. Hopefully someone who has had the same op will be along soon. Personally I wouldn't give thank you gifts until after the op. You should have a follow up appointment a few weeks later.

To address some of your questions

1. Yes, you should be able to get a copy of this. You might be sent one automatically. Otherwise you can ask and they should be happy to give you one.
2. Have you been told you will definitely need chemo and radiotherapy? You'll be given appointment dates for them after the op. Do you have a breast nurse? They might discuss at your post-op follow up appointment. Also you might be given a pre-chemo appointment to discuss it with a chemo nurse, have any tests etc.
3. Have you any reason to think you will need ondansetron? It's not typical to need serious antisickness meds after surgery and unless you have a history of severe post-op nausea I don't think they'd be willing to add it on beforehand. But obviously if you're sick afterwards they will prescribe something, not necessarily ondansetron though.
4. Not usually. They will usually provide all the medications for you to take home from the hospital pharmacy, so you don't need to worry about filling prescriptions.

Morning all
for our new posters.
royal good luck with your scan today. I have my first PET scan tomorrow.
java hope op goes well tomorrow.
Suffolk so sorry to hear about your baby. There are specialist sarcoma units around the country so you can always ask to be referred to a specialist if necessary.
Leslie take it easy. I am just lounging about a bit at the moment too.

Hello lacies.
leslie sorry you were feeling uncomfortable. Hope yoursituation has improved.
Welcome to those who have just joined us and so sorry you have had to. Suffolkawfully sorry about your little one. Best of luckjava.
Debsca i hope I did not come across as u thoughtful when I mentio ed yohr prognosis being good. Any cancer is worrying and itdoes not make it any "easier" being so. Best wishes! Have you spoekn to your DD yet?
Hi chewing good to her from you. I had my PET scan today and am knackered now. Feel free to ask me anything that is on your mind re the procedure.
Waving to everybody else.

Oh my so many typos up there..so sorry..am quite tired and dizzy.

How long does it take royal? I haven't been sent any paperwork as it was arranged urgently. Hope you feel better soon and you don't have to respond straight away if you're not up to it.

Hello everyone

Sending virtual hugs to everyone here. Thank you for your kind words. The 'C' word club is a shit one to be a member of but the people in it are superstars !!!!
I have heard that thyroid is an ok cancer to have. Haven't told anyone in real life apart from my husband this but mine is stage 3 so not all fabulous... But still not as horrendous as what a lot of you lovely ladies are dealing with
Not told my youngest yet. I am going to tell her when I have my check up after the radioiodone which will be well into next year. So I can tell her that it was something that I had but it is all better now.

Chewing, the scan itself did not take long( ten minutes) but the time before seemed like forever. Firstly, they do a routine check of your blood pressure, etc then inject you with a radioactive contrast and you have to wait for it to spread in your body..you are asked to remain still and relax for about one hour during which you are to drink as much water as possible..when it is time for the scan you are asked to go to the loo( you can go before that too). As I had a sinus headache, I was grateful for the relaxing part, but as I was fasting and had been told to not have any sugar or carbs 24 hours prior to the scan, I was really craving for some tea once I was done I literally glided to the hospital cafe for some!
Hope yours goes smoothly.

Chewing..in case you want the full information..it is more or less like what is in this link below, which I had been sent by a friend when she knew i was going to have a PET scan..a few differences, but generally the same stuff.
www.mercyhealthsaintmarys.com/documents/GrandRapids/MHSMPET-CTPrepDietrev8-23-13.pdf

Thanks royal. Yes, I am having to fast most of the day tomorrow so not sure how I will cope with that. Going out for a curry tonight so will have to make the most of it