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

useristired. Forget the job and concentrate on the small stuff.

Sending hugs and positivity.

Adding another hug for useristired

It is scary stuff. You're not a goner though. There are lots of treatment options. Try to take it one step at a time you will feel better once all the results are in and you have a treatment plan

useristired i am so so sorry and so wish I could wish it all away. I agree exitpursuedbyspartacus focus on YOU now. This is the toughest time, but as we keep saying, once you start treatment you will feel more in control. Many many of us here have been diagnosed years ago and are still around so please do not dwell on your fate (although naturally we all did! )
Lots of hugs from me too. Take it one step as a time as said above. That really honestly is the safest strategy!
Waving to everybody else.

Hi tutti, yes I know that, I had a clear SNB in 2014 and I understand the theory but It still amazes me that they completely stop looking at that point.

Useristired, I just want to add my support. The stage you are at now is absolutely shocking. I vividly remember my diagnosis time and all the terrible thoughts that came with it. Getting some support will be important, I hope you're able to manage that. Sorry I can't scroll back to check your post, do you have a partner?

mrsrhod it does seem a bit strange. Though I suppose it's based on evidence about the risk of scans compared to risk of undetected spread. If you're worried though you could ask your nurse about it at your next appointment. Maybe she will be able to reassure you a bit

Useristired I remember you writing that you are a single parent with very little RL support. Use online resources for support, it really helps to know that you are not the only one. If you are on Facebook there's also the Younger Breast Cancer Network where all the members are under 45.

This is the difficult time, waiting for results and not knowing what is happening. When you go back on Thursday you will start to get a management plan, and then with that in place most people feel less helpless and more in control.

Useristired,the limbo between getting the news and the treatment plan is really tough; and it's the fear of the unknown. It's a very scary time, but once you get your plan, you will feel so much better.

Chewing and MrsHodge, sorry I get what you mean now (not the sharpest tool in the box at the minute). Cancer can spread via blood; and I asked my surgeon the exact same question. They check your blood and it will show cancer cells, proteins produced by any cancers etc. but it's mainly elevation or reduction in important markers that they look for. If you're negative for lymph nodes and your bloods are all normal they don't tend to scan.
It was a niggle and a worry for me and I imagine a lot of other women, and even though it may not be clinically indicated and required, I think sometimes it's nice to have that reassurance.
Having said that, when they tell you that it can really throw up anomalies (artifacts) that can lead to a whole load of stress and unnecessary tests, they are absolutely right, they're not fobbing you of. (DD shadowed the Professor of radiology at my unit, last year; and he adopted her as his own special pet student)
My team wouldn't scan me, until after the first WLE & ANC, when it was clear that it was in the lymph and fat.

Bit Autumn here today. It's vest time me thinks. Wrap up warm and look after yourselves.

Yes online support can be invaluable.

There's also the Breast Cancer Care forum and they have a helpline too.

It can be good to have some real life support though. There will almost certainly be a breast cancer support group near you, unless you live somewhere very remote. It seems to be the best represented cancer, possibly just because it's quite easy to make witty names (Breast Friends, Bosom Buddies etc ). So hopefully you might be able to find some people locally going through the same thing.

Also a reminder as I don't think it's been mentioned for a while... You can apply for a free make up workshop with Look Good, Feel Better if you are interested. Personally I'd recommend waiting until you are having chemo as they give advice on things like drawing on eyebrows. There will be a make up expert and they give a whole bag of full size freebies. I still treasure my Chanel lipstick! It's a fun session with lots of people who understand what you're going through and especially helpful if you don't usually use make up but would like to disguise the chemo side effects a bit.

I went when I was having chemo the first time but I didn't lose my eyebrows or anything. I wish I hadn't been as I'm much more in need of it now

useristired do you have absolutely nobody in real life who can help at all? How old are your children? (Please ignore if you don't want to answer) it would probably be helpful to have someone who can look after them if needed. If they're at school or nursery you might need help with dropping off or picking up when you have appointments.

Also have they told you what to expect with the PET scan? I think you would ideally need someone to look after your children for a bit (possibly 24 hours?) as you'll be radioactive for a while afterwards and the advice is to avoid close contact with children and pregnant women

You're right Leslie, it's 24 hours, I had mine last month and had to send DD for a sleepover.
Real Life support is great. Chewing and I were lacies that lunch yesterday I have pink converse envy.

Hi, children are 11,10 and 6.
Their dad is close by and on hand but being self employed doesn't get paid if he doesn't work.
I didn't know that about the pet scan, is it vital they aren't with me as it's half term and I don't know what to do with them.

I'm in a really bad place at the moment and can't get myself out of bed. Can't sleep either. Every time I try I see my children sat at my funeral and it breaks my heart.

Morning all
I have a query about PET scans. Have most of you had one? When should you be given one? I have not had one and there's been no mention of it at all - is this the norm? Any advice would be appreciated.
Leslie those workshops do look good and I notice that a major hospital near me has one every month. I will go and book myself in for one. Anything to make me look half decent would be helpful

user sorry I was imagining babies or toddlers. You might be able to keep them at home then if you don't go too near them. You wouldn't be able to hug them and it would probably be best to stay out of the room as much as possible. I know that sounds rather melodramatic.

I don't have children. My mum drove me to the scan and I was advised to sit as far away from her as possible on the journey home. They said the distance from driver's seat to diagonally opposite back seat would be OK.

You would need to check with the scan people as I really don't know exactly how cautious you need to be. But you might be able to get away with it if you could trust them to play or watch telly without you supervising and to eat their dinner without you sitting with them etc.

The Cancer Research UK website says Although the amount of radiation is small, your doctor will recommend that you do not have long periods of close contact with pregnant women, babies and young children for the rest of the day.

chewing I didn't have a PET scan with my first diagnosis, only CT. I don't think I will be having PET scans routinely. The one I had this year was because the lesions in my lungs were quite small and they couldn't be absolutely certain that they were cancer. On the PET scan areas of cancer activity (and sometimes other things) glow so they are easier to identify.

They will choose the type of imaging that is most appropriate/useful for your specific case, so if you haven't had one, you probably don't need one.

Very few of the people I know who have/had cancer have had a PET scan so no, most people with cancer don't have them.

There's a bit about what PET scans are used for on the CRUK link in my previous post if you are interested.

This
As a precaution, you may be advised to avoid prolonged close contact with pregnant women, babies or young children for a few hours after a PET scan, as you will be slightly radioactive during this time

is from here www.nhs.uk/conditions/PET-scan/Pages/Introduction.aspx
I think they worry especially about babies ,infants and pregnant women .
When I had my PET scan I was told I would no longer be a risk after 2 hours .

Best to check with wherever you're going for advice .

istired I'm so sorry you're going through this ,just try and inch through the day . I would suggest phoning your GP on Monday and asking if you can have something to help you sleep .

Why oh why is it always the weekend when things are really bad.

There's an interesting image here comparing the images from a CT scan, PET scan and combined CT-PET :)

useristired i have two children aged 10 and 8 . I was diagnosed in June 2015, so not long ago. All I could think of was them when I found out and so I totally understand what you are going through. There are, however, more and more women surviving breast cancer than ever before and many of them are not in the early stages. I do NOT say this to make you feel better. I would not want anybody to do that to me! I want you to use the stats to be able to get through this because your head will be steering the emotions.
Now first things first: For the PET scan, I think you should get the full detailed info on just how much and how long you should avoid children( i was NOT told to avoid them completely when I had radioactive iodine uptake scans two years ago to check on my goitre) . Secondly, can their father babysit for one day( scan day) ?if not, Is there a neighbour you know well who could? Their ages are good, especially the two older ones to not cause any trouble.
You will get through the scan and you will tick away those dates one by one. In the meantime you might want to consider keeping a diary about how you feel? Or join a local breast cancer group? Or just stick with us..we will listen and support you as much as we can.

That's very useful, thanks Leslie.

Thank you, I've arranged my ex to have them overnight now. If I can't cuddle or sit with them they might get scared.
I appreciate the kind words.

Is a pet scan normal or is it because they think the cancer is somewhere else too?
I think I need to write a list of questions for the dr when I see her.

Hello just signing in as been recommended this thread. At a uni open day with DS so will write more later.
In last few days my wonderful DH has been diagnosed with inoperable advanced prostate cancer.
I am also waiting for an appointment with breast clinic for a lump (my DM has BC at same age as me.) As well as lump I also have ongoing shoulder blade pain on same side as lump.
I feel completely overwhelmed and terrified of DC being left alone.
I should just be concentrating on DH and whatever time he has left so also feel very guilty thinking about a health issue for me.

Hello dahliaaa, I'm so sorry to hear about your husband. What a devastating situation to find yourselves in. First thoughts always seem to go to our children, whatever age and I understand you're thinking the absolute worst at the moment. If we can offer any help, advice or comfort we all will and I hope your appt will show there is nothing seriously wrong with you. I was diagnosed as dd2 was doing university open days two years ago, it was very upsetting to imagine her being very far away.

Tutti, in my case I haven't even had any blood tests since surgery in May 2014. I think they must be purely basing my care on statistics.

Can I ask then , is the fact that I'm having a pet scan but many people don't bad news? Am I having it because they think I'm very advanced or terminal?
I'm so scared.
I feel that the Drs I saw yesterday told me the bare minimum and have left me to google/dwell/panic

useristited A PET scan is absolutely very helpful in investigating the body and does not necessarily mean you have a more serious or sinister cancer. In fact I think you are at an advantage because they can tell so much more form a PET scan than they would from a CT scan for exmaple. It will defintely help them to determine which treatment is best for you.
I am having a PET scan in my next follow up and have had several CT scans before. I recall a very experienced oncologist( not mine) telling me he thinks I should have had a PET scan back when I had the CT scan! So it may hust be that your doctor wants more information and is more prone to rely on this type of scan.

Forgot to mention not all hospitals have them because they are very expensive.

User, I realise you are overwhelmed at the moment, I've read your other thread now. If you want someone to talk to about your situation this weekend the helpline at breast cancer care is really good. I used it a couple of times at the beginning, they were very calm and caring and took time to explain things to me. You are exactly the sort of person who could find it useful as you're obviously very stressed out. Might be worth a call.

Oh goodness I'm getting people muddled now sorry, but still it's worth a call to try to ease your mind. It's very easy to read too much into what the medics say and imagine the worst.