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

I wouldn't have been much fun this week and would most likely have scared them.
It's been a dark and miserable time.
I'm still shocked and upset and very frightened. I wish I was stronger but I just keep thinking the worst about it all.
Plus I still can't believe this is happening to me, only a few weeks ago everything was fantastic. Life was good

I had my results today good and not so so good Paget's is gone but I didn't get clear margins was 3 cm of dcis there and I think he said 1mm left need 2mm or other way round anyway small bit still there will be having an operation in 2 weeks I'm glad Paget's gone and I'm nearly there dissointed I'm having another operation and also that I won't be having radiation till new year, I stupidly thought I'd be all done and dusted by Christmas but I am happy😀

user you're in shock. It's perfectly understandable. Be kind to yourself.

I coped very well with my first diagnosis. So I thought I'd sail through this too. No such luck. The first night after they told me I'd most likely had a recurrence I was absolutely terrified. I actually ended up in my parents' bed like I used to do when I had a bad dream as a child. It was comforting at first, then they both fell asleep and I was trapped between them, both snoring, and it was boiling hot. That was enough to put me off getting scared again (and my GP prescribed propranolol for me too!). It will get easier, I promise. I've found that gradually I have fewer moments of panic. I've processed it all very slowly and come to terms with it, ish.

My point is that you don't need to be "strong". Honestly, no one here is at all special. We are just normal people who got cancer. It strikes randomly, ish, and is certainly nothing to do with people's temperament. Give yourself time. You can also ask your GP to prescribe something for the anxiety. I've found that not having the overwhelming physical anxiety symptoms really helps me to not have the panicky thoughts too. I can talk myself down much more easily.

Life won't always be this dark and miserable, I promise.

bob yippee for the Paget's being gone. So long, sucker! Sorry you'll need more surgery though

I hope everyone's alright. I'm in hospital again with tonsillitis hopefully I'll be allowed home tomorrow with tablets. Chemo has been postponed until next week.

for you whatwould

i hope they are taking care of you and your comfy

leslie sending you loads and loads of good wishes. Hope that infection clears up very soon so you can get back to the business of zapping cancer.

Waving to everybody else.

Leslie I hope you are home soon and this is just a little blip.

I have all of you in my thoughts, especially those of you waiting for results, treatment plans, and those going through chemo. All the best user for today.

Well got very very very sore arm and no picc. Waiting for hospital to ring and get me an appointment for port.
On the great front, DD got a really good uni offer yesterday.

Hope your appointment goes OK user and here's hoping that your tonsilitis is sorted Leslie.

Hi to akll the other Lacies.

leslie so sorry to hear you're not well again, hope they can sort you out quickly and get you home again

tutti - arrghhh to not having a PICC put in. Let's hope they can get a port insertion scheduled soon. As leslie said, I'm now loving my port. I let them access it a week after surgery without the anaesthetic cream (had waited for a nurse to be free for so long already and couldn't be bothered to wait any longer) and the pain was awful - the nurse did warn me! - but it's absolutely fine now. Well done to your DD for the uni offer

bob glad to hear the pagets is gone, shame you have to have more surgery. Hope you don't have to wait too long

Afternoon all.
Leslie hope you feel better soon
Tutti annoying about the PICC but good news for dd.
Good luck to all those awaiting surgery or results.
Well I had a meeting with a member of the onc team and asked a few questions. It seems that everyone is working on the presumption of there being a wide spread of metastasis when in fact I only have one area so far. That is why I don't meet the criteria for targeted radiotherapy.
I then asked about bisphosphonates and was told they may consider it if the mets spread to other bones. I thought the point was to try to stop the spread not wait until it has! Also there is no need for further scans to see if it's spread until I get any symptoms or pain. I was clearly not very happy so an urgent appointment has been made to see the head onc in a few days.
Because I am a rare case they are basing my treatment on what they know happens with lung cancer when I feel that they shouldn't be assuming my breast cancer will react in the same way. It feels like I've been written off already

I also made contact with the specialist team at the other hospital but unfortunately they can't help me. They only deal with slow growing tumours and not fast spreading cancer.

Oh chewing that sounds like a really unsatisfactory appt . I hope you don't have to wait too long to see the senior oncologist although it sounds like you might need an arsenal of weapons behind to get them to change their approach. What a pain too abut the specialist hospital

Not posted on this thread before but looking for support and it's difficult to talk to people in real life. My 17 yr old son has a leison /tumour in his thigh bone and we are waiting for a diagnosis. He is amazing and strong although probably naive about what the future could hold. He's not daft and he knows it could be cancer but not the implications.
It all started in the summer. He had been having pain in the leg and it kept him awake at night. Gp sent for xray and physio. Most likely an injury, he's very sporty. Xray shows an 'abnormality' so referred for mri. Gp didn't sound overly concerned and mri apps was not for 6 weeks. Had mri mid September and 3 days after I get a call from the gp. I will never forget that awful phonecall. "I'm sorry but it does look like cancer". I was literally crushed and shocked, thank god she didn't speak to him directly. From that point nothing has followed how they said it would or how we thought it would be. Local hospital referred us to specialist centre, they took 3 weeks to see him. Thankfully they are less worried. They don't know what it is but it doesn't look malignant. This is great news but I still can't get the worry from my own head. In order to rule out cancer he has had a full body bone scan which we should get results from at his next appointment in November. The wait is awful. Dh doesn't understand he is very much a positive person and has latched on to every positive thing. I however can't forget that awful phonecall from the gp, it will never leave me. They don't know what it is so it could still be cancer. All his appointments are at cancer hospitals and cancer clinics, we are still on that pathway at the moment despite them saying it doesn't look malignant. I just need to know and can't talk in real life, don't want him to know I'm worried.

Sorry for long post, needed to get it all out

Hello popper and I am so sorry for what you are going through with your DS. What a terrible situation to be in not knowing for sure whether it is cancer or not and being presented to two very different possibilities! It is one thing to have cancer oneself, but a so different thing for one's own child to have it. I can only imagine what you are going through.
The bone scan should provide them with conclusive evidence on whether it is malignant or not. The wait is going to be very tough I know! How awful that your GP called to tell you such shocking news only for you to later be told that it is most probably not malignant! It can't be easy to be so confused and lost. Bless your DS for taking it all so well. I truly hope it is indeed benign and that this is just one of those things where you are flung into unnecessary panic only to receive good news in the end. My thoughts are with you both. Please feel free to come and talk with and to us.

Popper, it's bad enough going through all this if it's you, but as a mother, dealing with your child being threatened in this way, must be excrutiating. Macmillan support
The support line is excellent for answering the questions and worries that you may have, and as Royal says, we're here as well.

Well that's absolute rubbish Chewing. Where is specialising in your type of cancer ?

Bob great that the Pagets is sorted. Try to get an early surgery date for the cavity shave so that you haven't really started healing.

Leslie hope you're home and on the mend

Hope all the other Lacies have a good evening.

user how was your appointment? I hope you are OK. No need to post if you don't feel like it, but I am thinking of you

chewing that's very disappointing. Can they recommend anyone else? Even if it's someone far away they might be able to consult on your case. Also rather an unhelpful attitude from your team

popper hello :) sorry about your DS and that it's such a drawn out process. There used to be a thread, I think in the Children's health topic, for parents whose children had cancer. I don't know if it's still running, but there might be someone who has been through something similar. I hope your appointment is not too long away as the wait must be very difficult. Fingers crossed for something benign

Tutti sorry they didn't manage to insert a PICC. I hope you get an appointment soon. Well done to your DD.

minty I'm glad you are getting on well with your port :)

I am happier with mine now it's in use. My cannula failed yesterday and they couldn't get another in so I had to have oral antibiotics instead. They wanted to put in a PICC or central line so I suggested asking the chemo unit to insert the port needle and thankfully they agreed!

Still in hospital as I might have a chest infection and they think my immune system is misbehaving

Pressed post too soon.

I'm waving to everyone and sending love to all who need it

Tough times at the moment for many on here .I'm so sorry .

I'm a bit speechless for chewing - if the spread ( if it is a spread ) is only in one place why are they treating it as tho widespread ?
agree re biosphonates (sp ) for prevention

wait for pain and symptoms when they think it's fast moving and already spread ??????
Head onc better have answers ,I feel very on your behalf .

tutti your poor arm ,ouch!

popper I agree with others ,unbearable to have one's child affected .And to be in such limbo ,waiting for the next appointment .I'm so sorry that you're going through this .

Leslie bugger ,bugger ! Don't like that about your immune system ..is it the chemo knocking it out ?

user I've been thinking of you today ,hope you have some plan for treatment .

ginger I'm not convinced it is actually. My neutrophils are usually low (2 something and normal is 2-8) but they have been a bit raised recently. Yesterday they were 2.3 so obviously looks like a big drop compared to last cycle. But it is normal for me. I guess it depends what today's results were. I will ask about it at morning rounds

How are you?

popper sorry to hear about your ds. The waiting time just seems endless
Leslie hope you escape from hospital soon and are not feeling too rough.
Tutti I don't think there is any specialist for my exact type due to the rarity of cases worldwide. Lung cancer specialists were advising about rads treatment which is not ideal but probably the closest fit there is.
ginger I think they are considering it widespread as that's what usually happens It's as aggressive as you can get so maybe they're pre-empting. It's very unusual to spread to just one area but I could just be unique. Nothing so far has been straightforward with me unfortunately.

Ok, it's not great news.
I have non hormone receptive triple negative breast cancer.
It's aggressive.
The tumour in my chest is either a spread of cancer to the bone which means stage 4 or it's a stray lymph node which means stage 3.
I start chemo in the next 2 weeks. It will be hard acting and a big dose. I will lose my hair.
I'll never be cured apparently and this is about prolonging my life as much as possible and managing it.

I'm just in a daze , I'm devastated , i thought you could get past stage 3 and even stage 4 if caught and hit aggressively enough.
I'm just so very upset.
Cannot believe this has happened to me

Hi user

I'm really sorry it was not better news scream, shout, swear, throw things... Whatever you need to do! We are pretty much unshockable

Hopefully someone will be along later to help as I don't know much about breast cancer. But I didn't want your post to go unanswered.

I thought the same about stage III. They will not usually say someone is "cured" of any stage of cancer, because really the only way to know your cancer was cured is when you die of something else. It can lurk and reappear even many years down the line (though that's very, very rare).

Even stage IV cancer can often be controlled for years, though it's only "curable" in very specific circumstances and that's a recent development.

Do you have a breast care nurse? Can you ask for some clarification?

Triple negative is a bit trickier to treat because Tamoxifen and Herceptin are both useless against it. But plenty of progress is being made in triple negative breast cancer treatment too.

Have they arranged further tests to identify the chest lump?

And do you know what cancer you are having? People on here generally seem to have some combination of F, E, A and C and/or docetaxel or paclitaxel. So if it's any of those you're in good company but some people have had other potions too so there's bound to be someone with some experience!

Losing your hair is not much fun, but you will cope with it, and maybe even manage to laugh about it sometimes

Try to take it step by step. When is your next appointment? Just focus on that. Try to forget about all the future treatment stuff for now. You're in shock

This was all a bit long and rambly so I will stop before I get any more carried away.

I hope that you managed to get some sleep.

chewing I suppose it depends what they actually mean by treating it as widespread. Would you be a candidate for the radiotherapy otherwise or are there other criteria which you do not meet?

Re. specialists, even if there is no one who specialises in your exact cancer (I suppose they would be quite bored waiting for another case to pop up!) if you are not satisfied with your care then you can ask for a referral to a different hospital. Obviously it might make travelling to appointments more tricky, but sometimes you can still have the treatment locally

How is everyone this morning?

I slept soundly and was woken at 6am for my next dose of antibiotics. Now I'm impatiently waiting for the breakfast trolley to appear.

Anyone fancy some cold, burnt toast? Actually it wasn't burnt yesterday and I quite like cold toast

Good morning all.
useristired yes that sucks a lot ! of course you are overwhelmed! nobody asks for this or dreams of it, but hey listen it is now treatment time and yes the thought of chemo is shocking ..i have been there ( i had dose dense which is sort of concentrated) and most chemo does make you lose your hair anyways!
The shock will soon be replaced with some shade of calm as you go about your treatment. Have you thought of seeking a second opinion ?
You are in my thoughts.
tutti i have been meaning to say sorry about the picc failure but tbh I think a port is way more convenient! So that is the silver lining. And well done to your DD! You must be so proud.
leslie hope you wake up feeling betterand this whole immunity thing is resolved so you can get back on track with the chemo.
mrs how are things your way?
Wishing everybody well on this new day..cancer is reallg tough and a day to day struggle for us..let us hope today is one of the better days.

Leslie we posted at the same time seems! So glad you slept well and are keen on breakfast :) you "sound" much better. Hope the meds do their thing and you are back home soon.

Morning all.
I totally agree with royal's last sentence. to all of us.
Leslie glad that you are feeling brighter and looking forward to a scrummy hospital breakfast With regard to the rads they state that as I have (one) bone metastases they consider it a systemic disease and that it is therefore 'unlikely to be of significant benefit' to me. As this is very precisely targeted radiotherapy it now makes me wonder what benefit the standard radiotherapy will be. I will be asking onc more about this.
user I am so sorry about your results. My cancer is not hormone receptive either, is extremely aggressive and I am having 'hardcore' chemo (hair not fallen out yet). Are you going to be having surgery? I haven't had any yet but lots of lacies have. There is always someone here to hand hold when needed and share experiences. The shock of diagnosis is like being whacked with a sledge hammer and your emotions are all over the place. Do you have a breast care nurse? They are good to talk to. Breast Cancer Care has a triple negative forum which you might find helpful. We are all here for you too when you need to talk.