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

Dahliaa you must be under almost intolerable strain. It's the waiting game for the results as you well know from the experience with your husband, I'm so sorry to hear his prognosis; and am praying that your results will be better

Useristired, try not to 2nd guess the reasons for the scan, you'll be amazed how many of us here have exactly the same or similar diagnosis and the order of tests, chemo, radiation, scans etc. differs widely. Hospitals/consultants just do things in their own order . Very good advise from MrsHodge to ring the helplines, they will hopefully be able to give you some suport.

Thank you for the kind messages.

I'm sorry I can't add anything useful for anyone else at the moment but I hope all your treatments go well

Just popping back to say hi and I hope everyone's treatments are going ok. useristired I hope things are going ok for you. I was feeling very much like you were 3mths ago when I found out my diagnosis, and it may not seem like it yet, but it does get a bit easier once you start getting scans and treatments under your belt as you are at least doing something positive to get better. I still have bad days especially when watching my DC and wonder how I could ever leave them. I just keep trying to tell myself that so many people are now seeing 10yrs post diagnosis and I have no choice other than to be one of them for the sake of my DC.
Sorry if I'm a bit late to reply to this (had a bit of a crazy week trying to avoid catching a vomitting bug from DC) but I had a PICC line fitted before starting chemo and its just done under local anaestetic using an ultrasound machine to guide it into the right vein. I was then sent for an Xray to check location was correct. It was pretty quick and painless so definitely worth having if offered. Mine's been in 8wks now and the dressing did bother me a bit when the weather hot (just got itchy) but now its gotten cooler I forget its there.

Sorry useristired if my post worried you. It's not a bad sign you are having a PET scan. It's not something to read into either way really. It just means that someone has decided that a PET scan will provide useful information.

I've had a lovely day with relatives. Some people treat me weirdly now, but they treated me perfectly normally. I completely forgot I had cancer! In fact I was talking about how difficult my hair is to style and wondered why people were looking a bit confused, then I realised I'm bald now

I hope everyone is having a reasonable weekend. And wishing for plenty if pleasant distractions for those awaiting results or feeling grim

I'm just very worried and frightened.
I suddenly wish I'd made more of my life so far, never saved anything for best and looked after myself better.
I think my treatment if I can have some is going to be a long hard road.
I'm 40 next month and just cancelled all my exciting plans as all I can deal with right now is a huge cancerous lump on my chest and the agony of not knowing what happens next.
I'd rather kill myself than let my children watch me fade away to nothing.
I'm in a dark dark place right now

Sometimes you just have to surrender to the darkness. Hide under your duvet or bury your head in a book or whatever works for you. But it really will pass.

I'm pretty sure you'll be able to have treatment. There are many options even if it has spread. Certainly with breast cancer, you would be incredibly ill if you were at the stage of there being no treatment options.

But try to take it one day at a time. Forget about your birthday for now. I know it sucks. But you can make plans nearer the time. You can still do something special if you feel like it. But it's definitely not something that is worth wasting brain power on for now :)

Hello user...just saw some of your posts and wanted to add my support. My kids are 1 and 3 - and the two weeks I had to wait from knowing it was cancer to finding out where I stood we're very dark indeed so I can take a guess as to where you are standing atm. Like previous posts have mentioned, once I had a diagnosis and a plan in hand I found it all much easier to deal with, completely manageable in fact...some shit has got to get done and I'll make a list and bloody well tick things off, . So yes, wallow in the darkness if you need to, but know that's not all there is. Logistics is a nightmare, yes...and once you've in treatment you may find you get lost in the practicalities which leaves little time for anything else.
I sincerely hope you find your diagnoses far, far more favourable than you imagine. Wishing you the best.

Outlaws how are you doing?

I hope everyone managed a decent night's sleep

Just spotted the time on your post Outlaws so possibly not a good night's sleep!

Hi ladies, I tried posting my own post but no answer. I am not sure this is a right place to ask this. I have a mass right under my nipple. I am also pregnant with my 3rd. I had it for about 2.5 years after I stopped breastfeeding my ds. I saw gps couple of times that told since it is not in breast tissue just to ignore it. I got pregnant unexpectedly and mentioned the mass. Breast clinic biopsied it and said that there are atypical cells and mass will need to be removed surgecly but after pregnancy because it my ruin my chances to breastfeed. I went home processed the information and thought I would prefer to take it out now, not breastfeed and be healthy. I read atypical cell masses have 10% chance turning in to cancer. Anyone here started with atypical cell mass, waited and ended up with cancer? Should I wait or insist on surgery?

Hi user
When you go back for your results on Thursday try to make a list of questions, and write them down. It's also a good idea to bring someone with you for a second pair of ears. Sometimes when doctors give information it can be hard to take everything in. Ideally that person should be someone who will be supportive to you, but also level headed. I know having these appointments in half term is not ideal for childcare.

I was terrified of having chemo, but the reality was not as bad as my fears. They give antisickness meds to help with side effects. It is very scary, and I'm still often scared, even though my last chemo was in June and rads in August. The treatment takes a long time - expect to be finishing in the summer if you need chemo, rads and surgery. I was diagnosed last November and still go back to the chemo unit for herceptin, and will do until March. However, treatment will just become part of your life but not the only part of your life.

babynelly I've no experience of that as I didn't have breast cancer, but hopefully others will be along shortly with some experience.

It might also be better to wait until after pregnancy if it's not cancerous as I imagine there is some additional risk of having general anaesthetic while pregnant.

Medics are generally over-cautious if anything, so if they're happy to wait until after the birth then I would assume that means the risk of it becoming cancerous now must be very small.

How far into your pregnancy are you? (Congratulations by the way, and I'm sorry that this lump is complicating things )

Morning all
for our new lacies and all those that are worrying about results. It is a horrible thing to have to go through but a plan really does help.

It was nice to meet Tutti the other day. Think we were both relieved to find that neither of us were mad serial killers . It's good to talk in rl with someone in a similar situation.

Today I have a stew on the go and loads of washing to do. Will also be getting the clippers out to tackle the unruly bits which are sticking out at right angles to my head . Hope you all have as good a day as possible.

Hi, I am 16 weeks. Thank you :-)
I would not want general actually... I had mass removed long time ago with local and sedation I thought this could be similar. My biopsy was very pain free, could I not do it under local?

Speak for yourself Chewing. I'm just trying to fit my husband in the freezer. He's been a bit irritating recently .
Actually I'm sorting out everybody's jumper drawers and putting in new moth liners. My life is very very exciting.

Babynelly. I'm not sure you can or that you would actually want to. Best to talk to your Doctor, but I agree with Leslie, if they are not rushing to operate, it's because there is no reason to.

My heart is going out to everybody waiting for results and a lot of us that have had really bad SE's or operations this last couple of weeks; I'm thinking about you all.

How exciting to have a real life Lacies meeting! :)

babynelly you'd need to check with your surgeon. But I think you should prepare yourself for the possibility that you will need a GA. I suppose it depends on the location and size of the mass. I don't think anyone on this thread has had a lump removed using local anaesthetic.

Have they given you any more information about the abnormal cells? There might be someone on here with experience. Some of the older posters lurk and don't post often, unless it's something they can help with :)

Nelly my anaesthetist offered to do my mastectomy under local, but I firmly rejected it. The first I heard of this idea was on the morning of my surgery, and I was not at all prepared for it. Another lady in my ward had a lumpectomy under local. However, I think they mainly consider this if they think the risks of a general are high, and there would probably be a lot of sedation given.

It was very exciting Leslie. We had pizza and wine. (We're obviously on a health kick !) Chewing is lovely and very trendy with her hair and converse.
We had a good old chin wag; and it just so happens that she has some treatment at a hospital down the road from me.

Hospital appointments are stacking up like planes over Heathrow at the moment. They've got me at my regular hospital tomorrow morning for my pre-chemo, and at another hospital two hours away at roughly the same time . Have left messages to try and sort it out.

Am having a bad hair crisis. Am still cutting it all, but have been asked by teenage DD to Cold Cap.
I need a short hair cut that goes with a round steroid face and makes me look as trendy as Chewing.
I fear I'll just end up looking like a Humpty Dumpty Pudding Head.

Hope that all the Lacies are OK this morning, waves to everyone.

Morning all.
Tutti is a much more glamorous lacie than I am and was wearing some lovely rings
I have a relatively quiet week with just a blood test and onc appointment. Ds wants to go shopping for brogues Shoe shopping with him is a nightmare as he has unusual feet so I am steeling myself for that.

The clippers have been out and the straggly bits of hair all shorn. I now resemble an elderly mole
Tutti a short cut with layers might suit you but I am no expert (as you can tell).
Hope everybody has a good day.

Hi, lots of people have told me to write a list of questions for when I see the oncologist.
All I can think of asking is am I going to die.
What else should I ask?

I'm not the best person to answer ,especially as I had oesphageal and not breast cancer but I didn't want to ignore your very good question .

These links look a bit helpful .

What I never asked and always wished was for each test when I would get the results and how - but that is ongoing .

www.breastcancercare.org.uk/information-support/facing-breast-cancer/diagnosed-breast-cancer/diagnosis/questions-you-may-want

ww5.komen.org/uploadedFiles/Content_Binaries/KOMEED202600.pdf

ww5.komen.org/BreastCancer/QuestionstoAsktheDoctorPDFDownloads.html

Maybe ask about why you're having a PET scan ?

Unfortunately IME they don't always answer qusetions ,sometimes they just carry on and change the subject .

Also IME I found that although I could ask questions it was if it took all my energy and I couldn't focus on the answer .So be prepared to not be rushed and to say hang on a minute while I see if I've got the right and jot it down .

Hold on tight ,you have to go through this and you will manage .

Thank you. I know I'm having a pet scan because the cancer has spread so they need to determine how far it's gone.
I'm praying it's only in the areas they've already found it.
I'm not coping at all. I'm just not strong enough for this.

user if you don't have any questions then that's fine. People can be quite bossy when you have cancer, so don't feel you must follow any advice if it's not right for you :) the oncologist will tell you everything (s)he thinks you need to know.

You'll probably find that questions occur to you randomly, especially once you have all your scan results and a treatment plan. I have a notebook and I jot them down as soon as I think of them, as if I waited to write a whole list I would have forgotten them all. That would be my advice really - write things down when you think of them, as you'll probably find your brain isn't working at 100% at the moment.

As gingeroots says, take your time and write things down. You might be tempted not to and think you'll remember, but it's much easier to write it down than to try and get hold of someone to ask later if you've forgotten the details!

You are strong enough, just try take each day as it comes and (although its really hard) try just think about the next few days rather than longer term as no one really knows what is round the corner.
Questions are quite hard to know for the first appointments. My only question was the same as yours: how long I had left which they are very reluctant to say anything about which I guess is they don't know as everyone's situation is different so they cant say for sure and dont want to give you the wrong information. Like ginger said, you will find they are reluctant to answer some things or will say things like lets just deal with the first treatment/procedure and see what happens then can reassess, which isn't that helpful when you want definite answers.

Here are a few questions I probably would have asked (although they did give me most this information without having to ask).

1. What are the side effects of treatments?
2. When will it begin? (this helps as its good to have things starting)
3. Is the cancer responsive to hormone treatments? Or is there any drugs that you can take after chemo/surgery/rad that will keep things from coming back. (I'm not that knowledgeable about this as still near the beginning of treatments but from what I'm understanding, cancers that have hormone receptors present can be treated with certain drugs to block the receptors and so keep it under control long term)
4. Is there anyone you can speak to with regards to support for you and your DC? My breast care nurse got me a load of information about how to tell DC whats going on in an age appropriate way. I found this helpful as I could explain what was going on without panicking them. One of my big things at the minute is to try keep things as normal for them as possible so not to worry them.
5. One thing that might also be worth asking is, will you be offered any genetic screening to see if you were carrying any genes that are higher risk to cancers (I'm not sure how they allocate who gets screened but I guess it depends on if you have a family history of cancers and also age can play a factor.) If you are positive for any genes it can alter your treatment plans like you may want to consider a double mastectomy.

At my local hospital, everyone is allocated a breast care nurse who is your point of call at the hospital. So dont worry if you think of questions when you come home, as you can ring up the nurse and ask them anything and they should be able to help or find out things for you.

One other bit of advice I was given was to speak to DCs school about what was going on. This was really helpful as it meant I knew someone was keeping half an eye on them there if suddenly they started worrying about things that were going on. They also offered support like if we were running late from appointments, they'd sort out a way to look after them or if we needed to get to hospital early, they could go into school early. It just meant there's a back up plan if I got stuck in traffic which is only less thing to be worrying about. Our head only told class teachers on a need to know basis.

Sorry thats really long but hope it helps a bit.

I agree totally with everything said above by leslie and Ginger and I would envoyrage you to follow the invaluable advice fromtoomanybottoms. Best of luck.