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

Morning all. Very cold here today so I'm off out to get a woolly hat to add to my collection
I have had a fairly good week with no appointments but am back on the treadmill of scans etc next week.
Hope you all have a good weekend.

Morning all. Feeling quite human so far today so I'm going to celebrate with a trip to Waitrose!
I've just found out that a Macmillan Horizon Centre has opened near me so I'm hoping to try some yoga classes and possibly some hypnotherapy in the next couple of weeks. It looks amazing and this city is really lucky to have it I think. It's made me quite tearful in a good way.
I've not really had any contact with any cancer organisation or support groups yet (apart from this lifesaver!) and I'm starting to feel a bit cut off from everything.
Hope there is some good in today for everyone x

Flippy I am very sorry to hear your news too; life seems to be spectacularly shit at the moment for many people.

Having psyched myself up to support my parents as my Mum starts her chemo next week, I've now got to break the news that I am likely to be undergoing treatment at the same time.

Although I haven't had my test results (expected next Tue), the radiologist told me that mine are 22mm and 11mm respectively so I would take it as a positive that yours are much smaller.

What does it take to trigger the scans and extra tests etc? I asked my consultant if I would have any other tests to see if it had spread but he said that it is not something that is done routinely, but several of you have mentioned that you are having various scans.

Oh and before any of you say I am jumping the gun as I haven't had my results, the consultant was quite realistic about the chances of it being cancer.

But in the meantime, wishing everyone a peaceful weekend.

Thank you all for messages and and posts. It really is helping. Cookiepuss, spectacularly shit pretty much sums it up. I have no idea what triggers extra scans and tests - in my case I think a bone and CT scan are standard for everyone who is diagnosed. Doc said I would have an 'MOT'. I am petrified about chemo - the herceptin seems doable and desirable, but they will only give it with chemo. I have no family nearby, and I'm self employed - I need and want to look after DS and carry on working, and I can't see how that's going to be compatible with 18 weeks of chemo, which is what they suggested yesterday. I also have a significant family history of heart disease, so I'm terrified of anything that might affect my heart which is a side effect of chemo and herceptin.

I am lucky in that I have very good friends who will do their best to look after me and DS, but the practicalities are overwhelming me. To the point where I want to discuss alternative options and outcomes with the consultant next week - I already feel that I'm on the cancer treatment conveyor belt and my choices have been taken away.

I'm sorry, in RL, I am actually a fairly positive and resilient person. Hugs to everyone who needs them today - and those who don't!

Flippy there is really no need to apologise. Like you, I am normally a positive, organised and practical person and it is me who usually sorts everything out and provides support to those around me, but I feel totally out of control at the moment. I do not like that feeling.

Again, like you, I am running through all the practicalities of being able to work/manage a normal life whilst undergoing treatment. I don't want to give up my job as I love it and I think that will give me something to focus on.

I have to say that the thought of chemo scares the shit out of me too - is 18 weeks the "standard"? I think you need time to take in the information you have been given and presumably you will have the opportunity to discuss it further at your next appointment. I am not sure how quickly they start the treatment once you have been diagnosed but I have this image of being on one of those bloody airport conveyor belts that has malfunctioned and I am running along trying to keep up.

Cookie - I meant to say that the CT and bone scans are standard at my hospital for everyone, but I believe it differs by area. I'd take it as a positive if your team don't feel the need for you to have them.

Similarly, I love my work, I have worked really hard over the past few years as a freelancer, and even though my main clients were absolutely wonderful throughout DP's illness, I feel totally and utterly terrible about going back to them with more bad news and the need for more time off. At the end of the day, the work needs to be done, and they can't afford to carry me either.

As for the chemo cycles, I think it will depend on the type of cancer and what they're proposing. For me, they have so far suggested 6 treatments 3 weeks apart and then herceptin continuing for a year - I think. Not sure if I really took it all in yesterday. And yes, I am one of those people who can't stand the thought of losing my hair too - mostly because I don't want to stand out as someone who has cancer.

NHS standard is for treatment to start within 31 days, unless you wish otherwise. Definitely feels like a malfunctioning conveyor belt to me too!

Flippy, scans tend to be triggered when there's lymph node involvement in our trust.
I'm self employed and in have just had first chemo and have good/bad days, but have managed to make hay while the Sun shines and work most days since I started chemo. I avoided work for the two days after chemo though, following the butter in the dishwasher event.

Am also managing really well looking after DD. Although she is 17 and almost an independent adult, she is reacting badly and physically to my diagnosis (body covered in eczema, even inside her eyes (blethritis) and weeping wounds, sleepless nights etc). I don't think it's stopped me being there for her, 100%, but wont deny it's tough whatever the age of your children.
I'm also going down the Herceptin route, and they'll take very detailed base-line scans before commencing and monitor very closely.

It is a conveyor belt feeling Flippy. I think we can all relate to that.

I think most consultants use the Predict and another programme (that I can't remember what it's called) to give survival rates with/without adjuvent/neoadjuvant etc. treatment, but think that you'll only get that when all the staging results are in.
They plug in all the data and you are given a whole bunch of statistics associated with the various treatment options when they discuss the treatment plan.
It's tough Flippy. Unfortunately you know that all too clearly, and until all the questions are answered it's a fear of the unknown......
My best advise is breath, take one step at a time and try to eat this massive Elephant in bite sized pieces.
Please note though that you are not to go anywhere near Leslie our matriarchal Elephant, with any cutlery at all, not even a spoon.

That's good that you are able to work Tutti - do you mind if I ask what chemo regime you're on and what sort of cancer you have? Don't answer if you don't want to! Your poor DD - I go into sobbing mess if anyone mentions DS at the moment.

I promise that I won't even wave so much as a chopstick in Leslie's general direction

I'm FEC for 3 then T for 3. Herceptin starting cycle 5. Nivestim injections Day 2 to 7 after each chemo. One down five to go.

Breast Cancer. 35mm. Grade 3. Her 2 +
Macro mets in a third of the lymph nodes with extracapsular involvement. (The cancer has escaped the lymph nodes).

My poor DD is hoping to study medicine so is taking tough A Levels at the moment. For the last three years she has been doing work experience, including the unit I am being treated in. She is far too aware of what it all means I am afraid, and is wise beyond her years.
At the same time, she is like the proverbial swan. Calm on top but paddling like mad beneath the surface. Her skin is the outward reaction, and it's absolutely awfully horrendous .

I haven't cried for my Daughter Flippy, because I am so bloody focused on getting through all this shit and staying right by her side, but you'll have so many, many emotions and there just isn't a right way to deal with a disease that is just so unbelievably wrong

OK Lacies, I reckon we could do with a bit of a huddle :) (please surrender any cutlery first)

Scans seem to vary based on a whole load of different factors. If you're worried that you haven't had a scan then it's worth asking your team and they can explain their reasoning :)

Cookie if you need chemo then eighteen weeks would be about the minimum. Most people have six or eight three week cycles. Then there's the possibility of short delays due to infection or blood results not being good enough for chemo etc.

We had one member, Lily, sadly no longer with us, who worked throughout various treatments for secondary breast cancer, despite a long commute. It really depends on your type of work and how you react to the chemo.

Tutti sorry to hear about DD. Is she getting any counselling or anything? Obviously not a magic fix for the eczema, but to help with her reaction to your illness I mean

rocket I hope you've had a fun outing to Waitrose - any tempting treats? And the Macmillan place sounds great :) it can be very isolating

pepper have you dyed your hair green?!

chewing I hope you enjoyed hat shopping

I'm lazing on the sofa, but not feeling too bad really. I need some winter clothes so should probably start shopping. I used to like to dress quite smartly, but now I can't seem to get the balance right between comfy and slobbish we need proper chemo fashion!

Well I couldn't find a hat I liked so will look in the 'big town' next week.
With regard to scans I was given a whole body CT scan shortly after diagnosis. This highlighted a suspicious area so I then had a further MRI scan of that area. As I am approaching the end of chemo I am now having more scans to check the spread. I expect that the scans you have depend on the type of cancer and if it is in the lymph nodes. Mine is a particularly nasty type, known to scatter around the body, so even after treatment I will have more regular scans than most.
I have been signed off work for almost 6 months now as I work in a large building and have a busy commute so have a high risk of infection. Hoping to go back after rads but I haven't asked what my prognosis is as I know it is not likely to be good. Just taking each day as it comes at the moment with some being good and some not so good. and to all

Love the elephant photo Leslie It reminds me of the time I was nearly trampled by a herd as they rushed to the river

Flippy I think we have very similar types of cancer, mine was her2+ and oestrogen and progesterone positive too. I had 21 weeks of fec-t and herceptin for a year which is almost at an end now with just 3 more to go! I'm also self employed and the whole chemo thing terrified me as not working wasn't an option but as everyone who has been through it will tell you it's doable. The herceptin hasn't given me any real problems at all apart from being a bit achy for a couple of days after the injection and that's as bad as it gets for me. For my chemo I found if I could take out a couple of days immediately afterwards then I could juggle everything and managed to keep it all going, but with doectaxol the side effects didn't kick in for 2 or 3 days so I carried on as normal and then took a few days out. The steriods you take before and for a couple of days after chemo meant that sleep was in short supply so I was able to catch up on work then so as long as you don't do anything too noisy you maybe like me and working away happily at 4 in the morning because you can't sleep. Tamoxifen didn't agree with me at all but there are other options which I'm about to try and I'm very much in the minority with that I think.

Not quite the calming vibe I was going for chewing

I'm sorry to see so many new people on here, and so many people going through a rough time.
I'm also Her2+. I had 3 FEC and then followed that up with 9 weekly paclitaxel plus herceptin. It is probably possible to work 2/3 weeks on chemo, but I think working FT is not going to be easy. Herceptin is only licensed to be given alongside chemo, so chemo is hard to avoid. Herceptin does increase survival by almost 40% and IMO is worth giving a go. I feel for patients in poorer countries that cannot access it.

No scans for me either. I felt like Oliver asking for some more when I asked why not, and was met with a curt it's not necessary. I had 2 lymph nodes affected and grade 3 cancer. I think hospitals are moving across to less scanning unless there are symptoms. Too many scans can cause anxiety and expose patients to unnecessary radiation. They can't detect tiny areas of mets and so are usually clear even if mets later develop.

i was told after my mastectomy there would be no body scans as they are pointless !!

the urologist last week kept asking me what scans i had last year in regards to the breast cancer and looked confused when i replied just the boobs

my ct scan last night was so different to the one last month, i didnt have to get undressed and no awful sickness from the dye - the scan is up loaded on to the system within the hour but a week + for the report to be written

so the waiting continues - tho i might start ringing the urology department on monday in a hope to push it thru quicker - i know i have to have the kidney out but not knowing if its in my lungs is causing my left eye to twitch slightly

i have spent the day winding 600 christmas lights round my apple tree - it wasnt as therapeutic as i thought it might be!

We are going to tell the kids. Wish me luck

dora good luck

baubles glad the scan was better this time. Fingers crossed for answers early next week

Hi Lacies, bit of a dull drizzly day here. Hope we're all doing better than the weather.
Hope everything went as well as it could dora
Clothed scans are always better baubles, good luck with pushing for results; it's a worrying time and I hope you get some answers soon.

Best of luck Dorahope it went as well as it can.

Thanks for your messages. Went as well as could be expected. They are upset and in shock but have great friends around them.

Feeling low but cheered up by lady doing M&S bra fitting. Asked me why I was having a fitting (it's been ages since I got a new bra) when I said breast surgery she said "implants?" (I'm a 36D ffs). I said no breast cancer she said "oh you don't look like you have breast cancer". Is there a badge or tattoo that the clinic was supposed to give me?. Must remember to get one on Tuesday when have surgery.

Cookiepuss, as I sometimes say on here - I'm not any sort of healthcare professional. I had breast cancer diagnosed five years ago, had all the usual stuff done (chemo, surgery, rads, herceptin for a while) and started reading the oncology and related papers online every day. And following the big cancer conferences and their summaries of latest and best news. Have done ever since. Just an autistic science-geek, really, but there's so much encouraging news out there for so many people. Whatever I say on here should always be checked out with teams, and teams are always the best people to know what's what. No great skill to what I do at all - I just happen to have read a lot of it x

Dora, my beloved daughter calls me Wonky Donky now . I have one breast 36E and one 36B . I'm currently ignoring any bra issues and wearing the surgical bras. Sex on a Stick moi
Just had a lovely morning reading the history of chemotherapy development; and it's made the constantly bleeding nose far more bearable.

Doxorubicin comes from the bacteria found on an ancient castle in Italy (awww nice), then there's the one made from Periwinkles (one of my favourite flowers) and the Taxels, from Yew Trees. Makes the drugs seem "kinder" to me somehow. .

Lovely day in our neck of the woods, so I am going to potter about in the garden, pretending to be productive.
Hope all the Lacies are having a good day.

Morning all.
I have been feeling a bit low over the last few days. Think it's because I'll be getting some scan results this week.
I've also got loads of really sore spots under my chin and a really painful one in an eyebrow that won't stop throbbing and kept me awake. Hopefully they'll clear up soon.
Hope everyone is having a good weekend.