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! :)

At the hospital waiting for my neck ultrasound, they are running really late.
My mammogram was quick though, I got her to show me the clips they left in when they took out the lump. They looked like shiny grains of rice.
Bored.
How is everyone today? leslie hope your GA goes ok. Hugs to all

I hope you get seen soon pepper I'm glad the mammogram went quickly. When will you get the results, or do they tell you on the day at your hospital?

My procedure has been postponed as my oncologist said I'd have to wait a week for chemo afterwards I'd rather have the chemo as it has been quite a while!

LaaDeDa sympathies from another slave to their digestive system! I had XELOX previously (capecitabine and oxaliplatin) the oxaliplatin nausea is horrendous. Are they giving you plenty of antisickness? I hope it eases up soon. I'm the same with cravings and half finished packets

Cookie it's worth asking. My arm used to get very tender during chemo last time. They would give me a warm wheat bag, which helped a bit. There's not been any lasting damage, but it's not pleasant and worth avoiding if possible

Waving to all

Cookie I had the same as you're having and the fec caused the same problem with aching veins and my arm feeling hard. One of my nurses told me that if you haven't had surgery then they should use alternate arms as the fec is hard on your veins and this would give a longer recovery time. I would definately push to have the next lot through your left arm as the vein in my right arm got infected after 2 lots of fec and took 10 days of antibiotics to sort it and it was very painful and I'm right handed too so made doing anything very difficult! Waving to everyone else, and apologies as I haven't caught up with the thread yet.

Just checking in to say I got through surgery. Pain control went very wrong unfortunately, but has been sorted now. Surgery seems to have been a success- very glad it's done.

Hi everyone. I'm new to this and not sure if anyone will see this but here goes. Ive just turned 44. Married with one DD 13 yrs. recently have experienced some brown discharge. Bled when GP did smear. Today got CA125 result which was evaluated at 53. Now referred for pelvic ultrasound. So worried I have ovarian cancer as everything search points in this direction. Any advise or words very welcome as I don't want to discuss with family or friends just yet. Kind regards. Xx

Hi sdoc sorry, I don't have any experience. But hopefully someone will be along soon. I imagine there are several possible explanations. When is your ultrasound appointment? I hope you do not have too long to wait

So kind of u to take time to reply. Ultrasound Monday. Very nervous. Know it's bad to Google but couldn't help myself. Just wondering if anyone had experience of raised ca125.

Hi sdoc2016, hoping the ultrasound is reassuring on Monday. CA125 can be raised in pregnancy, endometriosis, fibroids , normal periods, pelvic inflammatory disease, or benign cysts of the ovaries, for example. So there are lots of possibilities for a slightly higher than normal reading. Everything crossed for something very treatable.

Hi sdoc, my mum had ovarian cancer and due to possible genetic connections I asked if I could be monitored for ovarian cancer by having CA125 tests, they said no because there are many reasons that the level could be raised. On its own it's not a clear enough detector of cancer. I was offered yearly ultrasounds.
So I'm not going to tell you not to worry- because that's silly advice, but they are giving you the ultrasound because the level is raised, but your normal level may be higher anyhow, or it could be something else less worrisome than cancer.
My mums was something ridiculous like 1000 and something, but she had stage 3/4 and is still here today 5 years later. Wishing you the best for Monday, the waiting is the worst bit.

Hi to everyone I went to get my PICC line today but my veins decided to play hide and seek with the ultrasound! Despite a very determined sonographer it wouldn't come out to play. So I am booked in on the morning of chemo to have the line put in at invasive radiography where they have whizzier machines to find shy veins.
Annoying, but it means I'm not sitting about on Friday morning twiddling my thumbs before chemo starts!

LaaDeDa - how have you found the port? Did you have it done under a general anaesthetic as that is what they said but I am sure other people have had a local with sedation which I would prefer unless it's really really painful.

Rovercat - thanks for the warning and I will see what they say tomorrow when I raise it with them.

Flippy - pleased to hear your op was successful yesterday.

Pepperrabbit hope you didn't have to wait too long in the end.

FlippyNeck great news that the surgery went well but grrr to pain. Are you comfortable now?

Leslie I'm so glad it's not just me going on and off food seemingly on a whim! I've done well on domperidone for my nausea and I stay on them constantly now but some days nothing seems to work except eating little and often and staying still I got up today though and pottered around so should be on the up (til the cycle starts again!) When did you last have your chemo?

sdoc2016 I'm sorry I've got nothing useful to say to help but all the luck in the world for Monday

Halfbaked oh no! How long did they look for before they decided your veins were not playing ball?! How frustrating for you!

Cookiepuss I really love the port! On the days I've felt rough I've been able to have a soothing bath and I am planning on going to sit in a hot tub in some spa very soon! I've still had my bloods done in clinic via my arm because not everyone is trained to use the port but that is just one needle every fortnight and takes about 1 minute. When they access the port it's a bit like a normal "sharp scratch", feels weird for about 2 mins then feels totally fine and that is the extent of the invasiveness! Removing doesn't hurt me at all.
I can show you what it looks like if you want?
I had it put in under local and was glad I didn't research it at all
It was like a proper operation!! I'm not sure what I was expecting but it wasn't everyone in scrubs and the big light thingy and various monitors attached to me! It didn't hurt but it feels odd when they insert it - I've never had a cesarean but people describe a tugging sensation etc and I found it a bit like that - it felt odd but not painful. It was sore for quite a few days, bruised and tender. Plus it takes a few days to get used to this foreign object in your body! But it was all worth it and I don't notice it much now. It's where my seat belt sits and that doesn't bother me at all.
Dunno if any of that is helpful?!

Thank you everyone for your good wishes and for taking the time to talk to me. It really means a lot as I know some of you are going through your own struggles and I wish you all health. As u say the waiting is the hardest but guess better to know. Will keep u updated. Sox

Evening all.
to sdoc2016
Leslie how annoying about your procedure being postponed
Flippy glad the op went well
Waves to Pepperrabbit and everyone else.
My MRI scan was clear so it hasn't reached my brain yet which is a relief.
Seeing another onc next week to discuss the second line chemo which will hopefully start soon. In the meantime the lump continues to grow.....

chewing that's a relief about the brain scan. Sorry the fucker is still growing though. I hope they start you on something soon to slow it down

Halfbaked how frustrating. I hope the vein is more cooperative next time!

Cookie I had my port under local anaesthetic and no sedation. It was exactly like Laa described. They did x rays during the procedure to check the position.

If anyone is getting a port I'd really recommend getting it in your chest rather than the arm. I'm cold as I've had to take my arm out of my cardigan while those with chest ports are toasty I'm so fed up of this that I'm actually crocheting a cardigan with a sleeve opening for my port

I think they decided arm as I wear lowish cut tops. My arm one is visible in a t-shirt anyway :) it's a very small scar, so unless you're very self conscious about appearance then I doubt it would be a problem

I rambled away on the previous thread about PICC lines and ports quite a bit!

sdoc good luck try to resist Google!

I'm having chemo. Yippee! I'm so pleased to be back on it after such a long wait. Not sure the cancer will be quite so pleased.

Chewing so pleased the brain scan was clear. Hope the next round of chemo starts soon.

Leslie, glad to hear you are well enough to start Chemo again!

Ladedaa she looked for over an hour!! She tried a couple of times, and was so determined but hopefully with x-rays and dye it will be easier on Friday. At least it confirms that I really do need a PICC or port so that's why they insisted I get it in before chemo starts.

Flippyneck glad the surgery went well and I hope the pain is being controlled.

Chemo starts tomorrow and I'm a little nervous, I have my bag packed with my tablet, book, crochet, fruit sweets, mints, headphones, socks, water, blanket, journal and pens! Thanks to all the fabulous suggestions on here.

I set up a messenger group of friends and family so I just have one place to update everyone in one go and have suggested specific ways that they can help me, as people have asked how and I find it incredibly difficult asking. I'm hoping friends will just do stuff, I think I'll be less stressed if someone pops round to make me dinner rather than having to put out a request that someone does, in fact I'm more likely just not to eat! - anyhow I'm rambling.
to all of you, this is such a shitty illness.

Half baked. Good luck. ❤️

Leslie and Cookies thanks for your replies re hair loss. Mine started coming out in fairly large strands but has slowed a bit now. I've already got a couple of sleep hats, beanies and scarves ready and going to look into wigs fairly soon.

Had my third lot of chemo today so now at home with my pump. Touch wood so far I haven't had horrendous side effects, although I do seem to be either constipated or diarrhea (which is interesting with a stoma and bag..). I also rather randomly have a really sore right butt cheek! I'm very much an appleshape so never had much of a bum to start with and now I've lost most of my padding and sitting around so much more than when I was working and not constantly tired it's really uncomfortable!

Laa dee da have you been given different anti sickness options? Sounds horrendous. I've found I'm keeping on top of things with ondansetron. I had severe hyperemesis with both my pregnancies so the one thing I do know about is which anti emetics work for me :)

Cookies I have a PICC line. Apparently I was the "difficult" case of the week as she found it really hard to get the line in even with the ultrasound etc. It's been around six weeks and I still have a bit of a bruise around the line.
sdoc my GP actually did the CA125 test when I had bloods before I went into hospital and it had come back with slightly raised levels, I can't remember the figure but think it was similar to yours, however at the hospital they said it really has to be much higher levels. When they operated on my bowel they also had the gynae team in to check out my ovaries (as you do) and it was fine. So obviously it's going to be a worrying time for you but as others have said it could be down to any number of factors.
Flippy hope you're recovering well.
Chewing hope they get you started on chemo soon.
Half baked good luck tomorrow. Ask your friends specifically for a meal - I'm sure they would appreciate having something specific to do. I've had people offer to do some housework and ironing for me, we're actually ok at the moment as my Mum and Mother in law have pretty much been (fighting over who does it) keeping on top of that but if I really needed the help I would totally take them up on the ironing bit at least.
Hope I haven't missed anyone.

Fluffywhitekittens. Thank you. Wishing you strength in your journey. Kind of u to reply to me I appreciate it. ❤️

Evening all - not posted for a while and it's been really busy!
I had my 5th chemo last week and had my check up with the oncologist today.
I haven't responded as well as expected to the chemo - docataxel/pertuzamub/herceptin. I'm really gutted it hasn't worked and also worried.

Instead of 6 or 7 chemo's I'm now going to be having surgery in about 3 weeks time.
I was expecting surgery - full mastectomy to left boob - but I'm worried they won't be able to get it all. My boob is massive now and I just feel it's grown - and worried it might have spread. I know this might be irrational but I feel my body has let me down yet again. Grrrrr.

On another note I'm happy with my arm port. I wear a vest top, a long sleeve jersey top I can pull up above the port line, and a sleeveless jumper on my chemo days and it's fine. I have had cold cap though so get a heated duvet as well.

I guess that's a silver lining - no more cold cap for me.

Hope all having a good night x

Hello lacies and welcome to sdoc2016 (although as Leslie always says, we hope you won't need to be here long ). Quick update - MRI showed nothing sinister other than lots of cysts & calcifications. Biopsy less clear and there is some LCIS in the same breast as the cancer. They will discuss again at next MDT but my feeling is we will move to mastectomy, in which case surgeon will do sentinel lymph node biopsy very soon.

To be honest I am quite happy dealing with this side of things; what I'm struggling with is how, what & when to tell family, friends and colleagues. Currently only a very few people know and they are fabulously supportive but I don't like being evasive or not responding to things. Any thoughts or advice would be really appreciated!

Sending hugs to you all.

Argy great news about the MRI, I hope the biopsy is clear and surgery is swift and successful.
I told work swiftly due to my circumstances of being a teacher I had to get cover in place before the holidays.
I told key people in my family and close friends and the school my daughter is at within a couple of weeks. I made it clear that I didn't mind people knowing, which took the burden off me telling my wider circle as I found coping with people's responses quite difficult and emotional. I did a few group texts to friends in the end, everyone has been supportive apart from one brother who has totally ignored me (his issue not mine)

It is exhausting telling people, I'm not that private and figure that a) the lack of hair will soon be a give away b) I'm on my own so need to have a support network around me
There have been some people who have massively stepped up to help that I wouldn't necessarily have expected to. It is a really personal thing and you have to be comfortable with who you tell.
Rocket not what you wanted to hear but I hope they can whip it all out with the surgery
Fluffy white you'll need to get a rubber ring to sit on, will help with the lack of padding and the constipation at least! Oh the delights of side effects!!

PICC line went in ok this morning back at home in the warm away from the snow awaiting chemo this afternoon. Is it just me or do the steroids make you manic?! I was up cleaning last night and don't feel like I can sit still, although gav
Waving to all with the arm that's not sore.

Sorry although gave up doing the washing up one handed and sat on the sofa eating chocs a friend sent instead!

hello to all old and new lacies, i hope your as comfortable in body and mind as you can be

i had a phone call from the surgeons secretary today to give me my date - she wanted me to know asap so my older daughters can book time off work to look after my younger dd

amazing they remembered such an important detail to make my life easier - gold star to the lovely Pat in uhw!

1st of Feb is farewell to my kidney and its squatters

ive actually just had my routine smear - ive doubled dared it to come back abnormal!

Not sure about body or mind, but I'm certainly comfortable in my bed

I'm glad you've finally got a date for your surgery looking and really touching that they remembered about your DD :) fingers crossed for your smear

Halfbaked no steroid mania here. But they do make me more hungry. I'm glad you got your PICC line sorted. I hope chemo went well and doesn't give you too many side effects

Argy good news about the MRI, but sorry that you're potentially looking at a bigger surgery. I hope you get a definite answer soon. I found it awkward telling people. I always feel guilty as they get all upset. I have found Facebook to be quite useful as I can just post one update and I don't have to decide who to tell. I tell family and close friends separately then post occasional updates to everyone else.

rocket not the news you were hoping for. They're very careful with surgery and can go back if they're not happy with margins, so I hope they will be able to get it all out. I'm sure you'll feel a bit better when it's been removed. Will you have radiotherapy too?

Fluffy I had number 12 yesterday and so we are pump twins! I find the first evening worst as I always forget to take it with me and end up yanking my arm. By the next morning I've got the hang of it.

Do you have those gel things for when you have diarrhoea? Have you had your stoma long? I have an ileoanal pouch but had a temporary stoma when I first had the surgery. It was reversed about four years ago. I hope your bum cheek stops hurting soon

Waving to everyone

baubles, good luck with the surgery -- great to hear they booked it with you/your DD's schedule in mind

Halfbaked, hope the PICC soreness goes away, and that your first chemo is trouble free

rocket, sorry to hear the chemo isn't working so well. Fingers crossed for the mastectomy. But glad you don't have to cold cap any more (your hair is amazing!)

Flippy, great news about the surgery! for a good recovery

sdoc, good luck -- sorry I don't know much about ovarian cancer

chewing, good thing the MRI was clear, and hope 2L chemo will sort it out

fluffy, ouch! Hope it gets better soon

leslie, glad you're more comfortable now

Argy, once I got over the thought of being a topic of conversation I didn't like the idea of people talking about me while I wasn't around, possibly in pitying tones with a few she's-so-brave's thrown in I realised information control was the least of my worries. It was easier to tell family, friends, work and DS school in one go (well, over a couple of weeks) once I had a surgery date, and not wonder later on who I had or hadn't told yet, or who wasn't supposed to know, or which phased wave of friends to tell next.

I asked those who said "let me know how I can help" to tell others who I wouldn't normally have seen, but who they'd be meeting up with. DH handled all correspondence with his side of the family (living overseas).

It was tiring, as Halfbaked says, because I felt I had to manage their reaction and I dreaded getting remarks like "Ooooh bet you'll be watching loads of box sets" (from colleagues), or "I had a friend with the same thing last year and now she's doing even better in her career!" (first of all, there's so many different types of breast cancer; secondly, I feel like you're setting me up for failure if I don't recover as well or gracefully as your friend).

But most people were sympathetic and nice, and the insensitive comments I chalked up to people being afraid they were one scan or mammogram away from being a cancer patient themselves. Now most everyone knows, I don't have to keep reliving the trauma of being diagnosed by having to tell someone new every so often.