The Lacies are back for cancer support thread 56 - all welcome!

[WhatWouldLeslieKnopeDo]

Hello again, and welcome to our 56th thread. Some of us have been here ages and others have just joined. I hope you've all made it safely over to the new thread.

An extra special welcome to anyone who is lurking and feeling a bit shy. We are all quite friendly and we definitely don't bite, so please do say hello if you'd like to.

All are welcome here. We started off as a breast cancer support thread many years back, but all cancer types are welcome and at any point in the "journey", even if you haven't yet been diagnosed. We have all had different experiences but there's almost certainly someone here who will understand how you are feeling.

Our previous thread is here.

I have started the new thread a little early, and I will explain why in a moment.

Hi all, this had slipped off threads I'm on, so thought I'd post!
I think Leslie is probably right about Sleepy - I keep checking back to see if she's posted but somehow I don't think she will now. I'm thinking of her children.
I was 36 when I was diagnosed, nearly 39 now.
My onc has asked me to go on a trial of a protein inhibitor called everolimus- wish Amber was here to ask about it. It sounds like a fairly heavy duty drug, but the criteria for getting on the trial was high likelihood of recurrence and it looks as though I have.
I'll get lots of scans over the next four years though, so if the bastard does come back, I'll know quickly!

Oh, and I did go private after diagnosis- same oncologist though. Advantages were: lots of anti-sickness drugs, white cell boosting injections, comfy chemo suite, own room after mastectomy. That's it really.

I had GCSF and plenty of antisickness meds as an NHS patient. But the advantages of a private room and palatable food could be good. Also if you do find your cancer is invasive your oncologist has access to a few extra drugs that are not funded on the NHS. However I agree with Mrs, the MDT approach is a good aspect of NHS care.

I wish Sleepy and her family all the best. This is such a cruel disease.

Mysilly, your point about extra drugs being available privately is a good one, I hope I never need it but it's nice to know I have that option. In two years on this thread I have heard few grumbles about NHS care.

Wee, will you definitely get the drug? Some trials have a dummy group too don't they. I hope it keeps you safe.

Well yes, Mrs rhod, it's a double blind trial so I may well get the placebo - having read the list of extensive side effects I might be able to tell. But I'll still get all the exciting scans.
Actually, one benefit of private health care (don't get it any more as husband changed jobs) was that I had weekly paclitaxel. My onc said it was better for many people but "resource intensive"!

Hi everyone.

I was shocked to get cancer at 42, even though I know this disease can affect many younger than me. I lost my brother-in-law to it age 30, but even then it's still something that you think happens to others, I never expected to get it myself. Such a shock!

Thinking of sleepy's family, I know she had quite young children, my heart goes out to them and her DH.

I'm sorry I didn't get to know Sleepy, I hope she's found herself surrounded by love and without any pain.

I have met my (very accomplished sounding) oncologist and here's what is happening. For the record I'm 38, not sure if I mentioned!

They want me to start chemo - get through that before the lumpectomy. I've received a Zoladex implant in my spare inches on my tum. And they've started me on Tamoxifen. Chemo (Fec-T) starts in 7-10 days I think. He said lump was ER positive, HER2 results weren't in yet. There was a lymphatic marker (?) in the cancer cells though no visible cancer in the lymph nodes that they could see (yet) - so the chemo is to zap that too.

Sounds a slightly different route than usual - any input is welcome. I got the appointment with the consultant the morning after my dx so was most unprepared and may have sounded incredibly dense and probably didn't ask a single salient question!

I had another question (sorry, I'm just all questions and no give atm!)

I'm in some discomfort on that side of my chest/shoulder - I always thought a tumour wouldn't be physically painful for some reason so I put off mentioning it as I thought maybe it was psychosomatic. But it's still there and increasing. Is this normal? It feels like something is lodged there, the kind of ache you'd get from a lump in your throat maybe, and that heaviness and ache is increasing. It's made sleeping a bit uncomfortable and now I'm feeling an idiot for not having asked the consultant about it.

Hi outlaw, I had a similar diagnosis to you. I had chemo to shrink my tumour before lumpectomy. When they did the surgery after chemo they didn't find any cancer cells so it seemed a good result. It seems to be more common on slightly larger lumps these days and becoming more common practice to do chemo first. I had a similar achey feeling to you, and like you I'm not sure if it was just psychological as I certainly didn't feel it before diagnosis. I did notice that the veins on that side of my shoulder were more pronounced though. Try not to think about it too much, it's easy to imagine all sorts of things.

Morning Lacies.

Have you got a BCN Outlaws ? I think it's important to establish a rapport as early as possible and then they become the go to guys for all the info that you forgot to ask at the consultations.

Manchester yesterday was quite literally a pain. DH's car has got leather winged type seats, and they started rubbing against the ANC arm, along with the occasional knock as we went over bumps and round corners. Feel like I've played a tough game of rugby, using only one side to tackle
To add insult to injury the CAT scan injection arm has swollen, all the veins are very pronounced and very bright blue and it looks like something's bitten it (hard) where the injection went in. Wasn't expecting that, as it didn't hurt at all at the time. Hoping it sorts itself out before the surgery on Thursday or I wont be even a one armed bandit
Hope everybody is holding their own today and making it as good as it can be.

Hi everyone, I've been reading this thread but staying quiet, lovely hearing from you all.

I wish I had something nicer to discuss....

Have any of you experienced constipation with the chemo. I was trying to ignore it but I've now had a laxative tablet, powder sachet and a suppository. I've had a bit of success but I'm feeling crampy. It's the weekend so I'm left to my own devices. I had similar on my first chemo cycle and it fixed itself with a laxative, then I had the opposite problem last cycle so dropped my guard this time!

What do you all suggest (hopefully/or hopefully it's not just me).

Re-hydrate the bowel by drinking a lot of water. It also softens the stools.
This was my BCN's advise after post op constipation. Sorry you're suffering; it's horrible on top of everything.

tulip sorry to hear you're suffering. I remember the constipation well it was miserable. Other than medicinal help the old fashioned remedies seem to be plenty of fluids (if you can cope with them), exercise (if you have the energy), certain foods - I think grapes, prunes? all have a laxative effect. If you do get as far as trying to go, try and put your feet up on a small stool and breathe out when you push (without straining of course!). Wishing you luck.

tutti ouch! And double ouch! That sounds a very painful day out. Hope things have calmed down for later in the week.

outlaws I had the complete opposite receptors to you, ER- Her2+ but was given chemo before surgery. 2 reasons were given - the tumour was quite large so the plan was to shrink it first so they could do a lumpectomy rather than mastectomy. Also, they would do ultrasounds every 2 cycles to check progress. If they could see the tumour responding by shrinking then should be stray cells anywhere else in my body, they would be responding too. FEC-T seems to be a fairly standard chemo protocol.

wee thank you for agree to do the trial. It's thanks to ladies like you that we're all getting the treatment we are. I hope you don't suffer too much if you get given the drug

Hi rocket. It sounds like you've caught things early. DCIS is the very early stages of breast cancer but it has to be treated as there is a chance that at some point some of the cells could break through the walls of the milk ducts into the surrounding tissue. It's when they've done that, that you're considered to have invasive breast cancer which can unfortunately spread round the body. I've only ever had NHS treatment. The private patients at my hospital use the same chemo facilities just on a different day. I was told by a nurse the difference was they had a plate to go under their pack of sandwiches!

chewing so sorry to hear the ongoing saga with your bloods. I have everything crossed you get a better result on Monday

exit and leslie hope you're both feeling better.

So I've had it definitely confirmed that treatment is to go ahead. Just need to confirm some dates as the date I've been given to put in the port is 2 days after the planned first chemo. I know the side effects are meant to be mild but not sure I fancy another trip to theatre so soon after!

Thank you for the ideas, I thought I was drinking heaps stupidly this has really bothered me, it seems like my body is letting me down (and it's been going like a trooper until now!)

minty I know how you feel about getting the port, I didn't get it, I didn't want another new procedure. It was too soon.

Tulip it's the things like this that tend to be the ones that really get us down. I'm sure once you've sorted things out you'll feel much brighter.

As to the port, I actually 'want' one. I'm on my second bout of breast cancer so had chemo only 2 years ago but my veins are now in a bad way. I can't have the herceptin injections due to local reactions so have to have IVs instead - all 18 of them over the next year. The port will make life so much easier, it's just that at my hospital they do it under a general and I'm not sure if I want that 2 days after chemo (even if I'm only supposed to have minor side effect). I'm sure it will all get sorted

Thanks for the explanation. I'm sorry you're still on this path it's difficult for me to write on these kinds of threads because I know I'll possibly upset someone who is experiencing something very different to me.

Do veins take a long time to heal? I assumed if I made it through my chemo sessions all would be well...

Tulip don't worry, you've certainly not upset me. I guess the thing with breast cancer is that although we can share the same stages, grades, receptors etc, we're different ages, treated by different professionals at different hospitals and are all on our own unique journey

As to veins,when I had chemo before I hadn't had surgery and so they used both arms and I made sure I alternated arms with each dose. Since then I've had 2 WLE last year and 4 weeks ago a mastectomy and DIEP reconstruction so they can only use one arm. I think I have bad veins anyway- they've been described as deep and valvey!

My veins definitely went very hard during chemo but that has gone now

Sorry they only use 1 arm because I've had two lots of lymph node biopsies and it's that surgery rather than breast surgery that stops them using an arm

Minty. I've only got the one good arm as well due to the lymph node removal. I thought I'd got good veins (preens) but the good one has seen a bit of action the last couple of weeks and I'm not liking the reaction to the contrast dye on Thursday.
I wonder if its too late to ask for a port at the same time as they're redoing the breast surgery ?

It's very frustrating- because I had nodes removed on both sides, I have no good arms!
I've had blood pressure issues recently and am not supposed to have blood pressure done in my arms, but no one knows how to do it from my legs!

Bloody hell Wee. I didn't know you could take blood pressure on a leg. Now I've thought about it, it's obvious, but I'm not surprised that HCPs don't know.
The nurse doing my contrast injection tutted when I asked her to go round and do the other arm, and it was only when I explained why, that she was a bit less frosty.

I hope everyone's having a good weekend. Leslie are you feeling any better and did you manage to get the medication you needed? Hopefully you will be able to get your scan and chemo next week.

Chewing sending lots of white cell wishes your way, so you can also get on with treatment.

Evening all and welcome to Tulip. Constipation is a pain in the arse. I find that a bag of dried apricots gets things moving well.
Hope you all had a good day. Tutti hope your arm is feeling a bit better. My CT contrast injection left me with the biggest, most colourful bruise so far and took weeks to fade.
I have had even more palaver with my bloods. Took a cab to the local hospital yesterday afternoon only to find that the blood department is shut on Friday as well as Monday . I then called my surgery to see if a nurse could fit me in as it was urgent. They weren't helpful - suggested going to a hospital miles away and told me that my main hospital didn't take walk ins (not true). As time was getting on I had to get another cab to my usual hospital as the bus would have taken too long.
I texted dh to explain what was going on and then he called the GP surgery to politely point out that cancer patients are supposed to be a priority and that I was having to trek around the county just for a quick blood test. After paying a small fortune for the cab I had my bloods taken and on the way out the surgery rang to say that they had no appointments free but that I could go there and wait for a nurse to become available
Prior to this I had a call from my usual chemo department to say that they had a cancellation and could fit me in at 9am Monday rather than me having to go to an afternoon appointment in a non local hospital . The MDT meets on a Friday so it makes me wonder if my chemo delays had been discussed . Hopefully Monday will be less eventful and I won't feel like that guy in Planes, Trains and Automobiles again

I'm hoping that I won't be signing up for full membership with you guys. You don't mind me doing a 7 day trial while I wait to be told I have a benign cyst (this is positive mental attitude) do you?

I'm 37, have had a lump on my right breast for about 6 months that I've ignored, and now have a lump on my armpit as punishment for my own stupidity for ignoring the first.

I saw my GP last week who said I've got a definite nodule lets hope it's a cyst eh? I agreed with that diagnosis.

I've got my appointment at the breast clinic for this week. I am very lucky to have a brand new multi million pound designated building at my hospital that opened a year ago. When they called to book they said expect to be here 3-4 hours as we'll let you know the result before you leave. So at least stress levels won't be pushed further with too much waiting.

RL support not in place currently as I've only told my DH, as friends and family have only just begun to recover from my eldest child having cancer, and I don't want to cause unnecessary stress for a benign cyst right?

So I've come on to here - hope you don't mind.

Solsit We'll let you park your bottom for a few days, but then we'd like you to move on (hopefully). It's a lot to assimilate when you've a child with this wretched disease. Try not to stress (easier said than done).

Chewing. I'm angry on your behalf. They all need to get their act together, you've got too much going on without taking a worldwide tour.

Morning everyone else , lovely sunny Autumn day here today.