Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

On the topic of hair - how is yours now royal?!

Cellulitis is am under skin bacterial infection and lymphedema affected limbs can easily get it because of the swollen and break prone skin. If left untreated it can cause septecemia.
So glad that your quality of life has improved so much now. Mannush hair is all the rave..so you're just being trendy
My hair is thicker and longer but still quite unruly and really misbehaving! Seriously considering chopping some off!

Thanks @Leslie went to see my lovely GP she said its situational anxiety and should ease in time.
Today I have taken quite a strict approach with myself and it's been better.
She also said iron has come back normal .

Waves to all and so pleased for people who's tests have come back normal /positive !!

leslie thank you for letting us know about MAS. always sad to know though when we lose someone from the group, I'm always reminded of lilymaid and beccajo, the latter because she was so young with young children.

I'm so pleased though that your surgery has done you the world of good and that it's just chemo SE you have to deal with.

royal Sorry to hear of your scare but glad to hear your scan was clear, always a relief at follow up appt.

lairyhegs great news you must be so relieved!

zebra one year on is a big milestone, fingers crossed for your scan tomorrow

mrs does it feel like time has flown these last 3 years or are you aware of counting every single one? Will be lovely to have DD home again soon

chewing yeah for shrinkage! I hope you get similarly good results with any other tests

flippy good to hear that the cardiologist was happy for you to carry on with the herceptin. as for radiotherapy I found it hard too but maybe for different reasons. I was struck with the science and need for accuracy of it all. If the rays were that dangerous they couldn't hit a healthy part of the body then bloody hell the bit they were treating must be seriously bad was how i looked at it!

VCLos Sorry the wait is getting to you. It is so tough and we all cope in our own way but i hope the anxiety improves

So I got annoyed today when one of DHs cousins (female) included me in one of those generic messages on FB (Yes I know it's the work of the devil!) Saying to post a heart on my timeline in recognition of breast cancer prevention week . Think I'll just have to ignore rather than rise to the bait....

Finally have an appt with the cardiologist next Tuesday (nearly 8 weeks after I'd been told of the referral - seems like an admin error at my local hospital!). I saw the oncologist as planned yesterday and she said as soon as she gets the green light she wants to start treatment again. I've still got 8 doses of herceptin to go so won't be finished now till end Nov at the earliest and I'll prob still have my port through to the new year.

This time last year I was ringing my team saying 'the rational part of me is saying this lump is just scar tissue but the irrational part of me is keeping me awake at night'. The brexit vote anniversary will be exactly a year since I was told the cancer had come back

I'm sure I've missed loads of people but a big wave to you all. Im a big insomniac now thanks to all the treatment so will no doubt end up watching the results come in tonight!

Oh, that is annoying royal. I hope it won't be a problem again

No danger of me and my hair being fashionable

VLCos I hope it goes away soon. I find being tough with myself quite effective. I tell myself not to be a baby and that works better for me than being kind good news about your iron

minty good luck with the cardiologist. It's good the oncologist is raring to go, but a pain it'll drag on for most of the year! Those messages are so annoying I got the same one the other day. It is not even breast cancer awareness week/month at the moment. And it is so pointless to raise awareness secretly

I hope everyone sleeps well

Hello everyone , long time lurker here.
I was diagnosed with BC three years ago, had chemo and rads (many stories i read on here as a lurker were very helpful and reassuring through that time).
I had doube mastectomy after treatment and had diep/tram reconstruction last year, followed by some more fat transfer beginning of this year.
Then tonight I've found a small soft moveable(ish) lump just above where the breast finishes but meets the chest and sort of close to the rib (there's not much fat there as awaiting more fat transfer to fill a hollow above the breast)
I lucikly managed to see my GP tonight who is getting in touch to have a chat with the breast clinic on Monday but he seemed fairly confident it was nothing sinister... but my mind is going overtime.
I've held everything together the last few years but this has thrown me!!
I'm trying to talk myself down that it's possibly scar tissue from ops/ fat transfer, I can't tell any of my family don't want to worry them unnecessarily, can someone please tell me if they've had anything similar????
Sorry if I'm waffling I've had two large glasses of wine and just got off google!!!!!
Any words of wisdom from you wonderful lot would be greatly appreciated (yes I know I should have resisted Google...its the first rule!)

Evening all, so pleased your tumour and lymph have shrunk chewing
royal I have 6 monthly injections of zoldronic acid (sometimes called alendronic acid or zometa) which is to help bone strength and prevent bone mets. It's given as an IV, I have my next one in about 2 weeks time, so the anniversary of my last chemo. It does make me feel nauseous but only for that day, kind of waves of dizzy woozyness but nothing like chemo. I have 3 years prescribed.

Magicme1 step away from Google! So sorry you have all the worry again, hopefully it's nothing, probably a cyst. I know exactly what you mean though, as soon as the possibility enters your head, you can't shake it. Do you have something to do to distract you this weekend?

Hi Magic. It's lovely to "meet" a lurker, but I'm sorry it's because you've got this worry I'm glad your GP is taking it seriously so hopefully you can have it checked next week and get some reassurance

Hello what would , pepperrabbit nice to meet you.
I think I'll be keeping busy , I have children so got weekend stuff planned .
I know realistically that it could be a thousand and one different things...I also had cancer previously (unrelated to the breast cancer, they can't find any genetic link , just bloody unlucky!)....so this has added to my fear! I woke up this morning with that horrible feeling in my stomach and took me a moment to remember (probably due to the glasses of wine ☺)
Anyway hope everyone has a good weekend or the best they can....and I'll hopefully report back alot less stressed next week.
The good thing is I've finally come in from the dark side and actually posted after many years of lurking

Hello everyone l I hope it's ok for me to join here? I've read this thread and found it very supportive, reassuring and inspiring.

2 weeks ago I found a strange mass in my right breast, I've got my appointment at the breast clinic on Tuesday afternoon, it's been a very long 2 weeks! I've mostly resisted the urge to google but I have to say I'm expecting the worst.

Good morning

user of course it is OK to join. Hopefully you won't need to stay long :) good luck for your appointment on Tuesday. Remember 9 out of 10 lumps are harmless, so the odds are in your favour. Though of course everyone expects to be the 1 in 10!

Magic bloody unlucky indeed! No wonder you're worried but hopefully this is just some scar tissue or a fatty blob (not a medical term ) or something

I hope you both have some nice distractions this weekend. It looks like it is going to be a lovely day here. The sun is already shining :)

I was hoping to go to the demo in Parliament Square today, but I woke up with a sore throat so I'm not sure if I'll be able to go. I've given up reporting every sore throat as I get them so frequently and it will clear up without antibiotics after a day or two. Apparently my tonsils are chronically infected and the only solution is to have them removed!

magic welcome to the bright side although sorry to hear the reason why. I too had a DIEP reconstruction last year at the same time as a single mastectomy. In all my follow ups the surgeons have talked about the possibility of fat necrosis which could develop at any time so I wonder if that might be the cause. The surgery was also due to a second cancer diagnosis (albeit in the same breast) so i know what you mean about the fear of it returning again. Hopefully your DC will keep you busy over the weekend and you get some answers soon

user welcome to you too. You've done the worst of the waiting, not long to go now! Fingers crossed that you get the right result on Tuesday

leslie hope the throat doesn't get worse and that even if you cant join the demo you can make the most of the sunshine

Hello lacies.
pepper thanks for responding. I'm not sure I want to be going through that tbh..not now that I get to stay away from hospitals but I will give it some thought and do some research.
leslie hope your sore throat clears soon.I get them quite often too.
magic hello. I hope you are reassured. Nobody can blame you for feeling anxious.
Waving to everyone else.

My throat is still a bit sore but really not that bad. I've had quite a restful day, but sat out in the garden enjoying the sunshine. I hope you've both had some too :)

Hi Minty and Royal thank you for your kind words.
I did have some necrosis in that breast that they removed in the fat transfer at beginning of the year so hoping it's some they missed, although its just above the breast sort of thing where its hollow still, the idea is they'll be doing another fat transfer to where the area is in the coming months .
I'm alot calmer tonight though , I think I just panicked.

Hi, I have just caught up on this thread and saw you thoughtfully mentioned me at the beginning.

To recap I was diagnosed with triple negative bc in October with spread to neck lymphs and a mass in my chest- locally advanced. Due to disgusting treatment from NHS I had a private consultant at Harley street give me a second opinion and he put me on a trial which was chemo and a trial drug from Nov-Apr which obliterated me. I have long term neuropathy in my hands and feet and I'm tired. To top it off the chemo did not get rid of the cancer, it did however reduce the size of most of it and stabilise it and the primary lump in the breast has gone.
Back to the NHS but a different onc and she insisted I have some time off chemo before we attempt to hit it again so I had a lovely 2 month break.
Started my weekly paclitaxol last week and first few days I felt great but today I'm tired and achy. Hope this isn't going to last as I'm back working now, who can survive on SSP?!
We are hoping for the chest mass to reduce enough for surgery, last pet scan showed it is not in any major organs or bone so although I feel doomed I'm trying to stay positive.
I'm a single parent of 3 amazing children who I need to see through to adulthood.
I'm also doing the Care Oncology protocol and taking supplements a plenty!

I am mostly a lurker and avoided this for a while as I feel so out of place with my not quite usual situation but thank you for thinking of me still.

Hi user it's lovely to hear from you :) I'm sorry to hear the trial was such hard work, but good that it was so effective on the original lump. Hopefully the paclitaxel will do its job on the other one. A few others on here have had paclitaxel.

Please don't feel out of place. There are a few of us who are slightly odd ones out for various reasons. I've got bowel cancer and until recently I was the only one on here with it. There's a couple of people with other cancers. And then there's all sorts of breast cancer experiences so although there probably is a more typical experience, you're definitely not the only different one on here and you are more than welcome

Magic it's not surprising you panicked considering, but hopefully it will be easily explained

I hope everyone has had a relaxing weekend

Hi user lovely to hear from you again. Sorry to hear you've had a rough ride with everything though, it sounds like is been tough. I hope the paclitaxol doesn't get worse, I got a lot of pain with it and ended up with neuropathy in my fingers so just watch that yours doesn't get worse.

magic I'm due to have lipofill in my reconstruction later on this year. Any tips or things that would be good to know?

Today I had my long awaited heart tests. It was pretty full on - bloods, chest x-ray, ECG, resting echo, stress echo, I was at the hospital for 8 hours in total! Short story is herceptin can restart but I'm on 2 lots of pills and regular check ups with the Brompton team for the next few months. Fingers crossed I get an appt through soon for my first dose.

Hope everyone is enjoying the sunshine and that those waiting for tests and results are bearing up well

Just popping in to say hello while the laptop is charged. Have my scan on Friday and results early July.
Hope everyone is making the most of the sunshine and not too stressed waiting for results.
Leslie, I seem to suffer quite a lot from sore throat too at the moment.

fluffy I find the inside of my nose gets really sore and also my mouth. I get a few ulcers, but just the whole surface feels really sensitive. So I think it's probably all linked. Annoying though. Good luck with your scan I have one on Monday so I guess we will get results around the same time!

minty gosh that's quite a work up! It's good they were so thorough I suppose. I hope you get your first appointment soon so you can get through the doses quickly :)

It's really sunny here. I hope it is for you all too. Hopefully chemo tomorrow. The nurse will phone this afternoon once my oncologist has checked my blood results.

I forgot I had a heart MRI as well! Yep loads of tests but the good thing is I now know that the chemo didn't damage my heart- mri showed no signs of scarring which is great. The team I saw specialise in cancer treatment induced cardio problems so I couldn't be in better hands. The consultant texted my oncologist while I was with and the chemo ward rang this morning with an appt for next Monday. Yeah!

leslie fingers crossed for chemo tomorrow

fluffy good luck with the scan on friday

That's very efficient minty. Great news about no chemo damage!

surprise phone call for me today from the plastic surgeons secretary warning me im about to receive appointments for the next few weeks for scans/pre ops etc as i have date for reconstruction - July 26th!

its a perfect date as my dd starts college in sept and i will have to drive her there - at the moment she is whizzed about in a mini bus to her special school

i have put down the biscuits and seriously thought hard about going for a swim to try and awaken my stomach muscles!

Great news baubles! The one thing I wasn't so keen on was having my photo taken (well a headless topless shot....) by a 3d camera. And then knowing the results were going to be viewed and discussed at the mdt meeting!

Hopefully you'll be all healed and driving again come Sept which will be great. Don't know if strong stomach muscles mean you'll suffer more or less afterwards but there's definitely nothing wrong in getting fit!